Medical update

This latest treatment plan I’m on has been a real humdinger, the hardest I've ever been on.  It is a combination of lower doses of four drugs, but it causing some very unacceptable side effects.  I’ve been ready to quit on more than one occasion.  The first problem was that the Revlimid, even at a small dose, after 10 days, caused a small stroke affecting my left arm.  It really is fully functional, though slightly weaker, and they told me at the hospital, where they thoroughly checked me out, that on a loss of functionality scale of 0-24 I was a zero, so that was very encouraging.  Any weakness should heal up on its own as the rest of the brain compensates for the lost cells.

Now the Doxil is causing some heart pain and problems, which landed me up in the ER a second time.  After a thorough bunch of tests again, at least I know it’s not a heart attack, but it is still worrying.  I think the Dex along with the Doxil has affected my heart.  Dr. Chen wants me to see a cardiologist and meanwhile has put me on a blood thinning drug (Xarelto) to prevent a further stroke.  These drugs are pretty heavy duty.  I asked Dr. Chen if we can switch to a different steroid other than the heavily stimulating Dexamethasone, and he said yes, so I'm looking forward to NOT doing that horrid drug any more.

When I told him I wanted to quit this protocol, Dr. Chen has explained to me that there are not a lot of options at this point to get rid of the plasmacytomas (small tumors) which have grown on various places in my body, including some organs such as spleen and duodenum.  The ones that got ahold of the lymph nodes under my arm and were spreading fast were taken out by 15 radiation treatments, which have been a challenge to recover from, but it’s mostly healed now.  My actual myeloma numbers are very very good, and what he told me is that the plasmacytomas are a mutated form of the myeloma cells, which don’t show up on the regular blood tests nor do they respond that well to the immunotherapies (CAR-T for instance, the latest thing, doesn’t budge them).  So this four drug combo, which was also given to me by a myeloma specialist in LA, who independently has the SAME protocol as Dr. Chen to deal with this, is about the only path forward for now.  So I MUST continue, but without the Revlimid.  No more of that drug, ever, for me, don’t want to risk another stroke.

So this has been a real wild time these past three months.  I’ve gone from feeling like I was in remission, which is what my numbers showed, to having a lot of tumors all of a sudden which I didn’t know about because they weren’t being picked up in the monthly blood test.  And just getting into treatment for that, tolerating the treatment itself, driving myself to the 15 radiation days, arranging rides down to Dr Chen’s for treatments (quite a distance, and I can’t do it myself), etc. has taken all my available energy.  I’m still somewhat in shock that this has happened and can’t quite get to grips with the sudden relapse.  Especially because the blasted thing shape-shifted and wasn’t showing up via normal tests.  It’s a real formidable foe, but together with my good doctor I’m convinced we can beat it.  Dr. Chen has put more than one patient into complete remission from plasmacytomas worse than mine, and is confident he can do so for me.  If I can just tolerate these darned drugs!  Please pray that I can. 

A Quick Update . . .

Now that the radiation is done, I have consulted a myeloma specialist in LA by phone, Dr. James Berenson.  He treats “metronomically” (i.e. low dose) like Dr. Chen does, and has put me on a chemo regimen for the next six months to address these plasmacytomas.  It’s quite interesting that Dr. Chen has come up with an almost identical protocol on his own, but with different timing.  Since Dr Berenson has done this with hundreds of patients, I talked Dr. Chen into doing his version.  It’s a 28 day cycle, 14 days on, two week BREAK (yes!!), using lower doses of Doxil/Velcade/Revlimid and Dexamethasone.

I had a rather rough first week (the Doxil caused a bad rash which I’m having to take steroids for, and the Velcade caused low blood pressure).  But entering the second week now, the BP seems to be normalizing and the second round of Dex is holding the rash down.  This isn’t fun.  I spent an hour in bed this morning (sleepless from the Dex) planning all the things I can do to restore my health during the two weeks off.  Have got Vitamin C infusions lined up, and an acupuncture session, and think I will also add a colonic, as these drugs really stop things up, need to move these toxins out.

So that’s the regimen for now.  More updates later.  Wrestling with ever-slippery wily myeloma cells seems to have become my life these days.  But I’m grateful for the functioning I do have, and for the good medical treatment and wonderful insurance (Medicare plus supplement, supplement paid for by a grant from the Leukemia & Lymphoma society, making my co-pays for this incredibly expensive treatment absolutely zero).  Medicare for all should be available to all citizens of this country (like every other civilized country in the world).

In answer to "How are you doing??" . . .

Everyone keeps asking how I am doing, so I guess it’s time for an explanation.  For some reason, I haven’t wanted to speak publicly about what I’m going through, it’s kind of confusing and disorienting and all happening too quickly.  So in case you're interested, here is the long version of an answer . . .

I thought I was doing well on monthly Darzalex immunotherapy maintenance – my M-spike has been pretty much flatlined at 0.1 for the past nine months, so I assumed I was at remission.  Wrong!  I sort of wondered why I wasn’t feeling as well as I should, with that kind of number, but was holding off having an MRI done until the one-year anniversary of the last one in late October, despite a pain in my shoulder.

The pain produced some badly swollen glands under the arm, so I spent an entire month getting this diagnosed:  three ultrasounds, a mammogram (not breast cancer!), a needle biopsy (ouch) and then a PET scan.  What was determined from all this was that it was plasmacytomas which had invaded the lymph nodes.  Those are cancerous tumors which form from the myeloma cells.  The PET scan revealed that they are also in various other places on my body as well.  Which is why I’ve been so tired.

I need to have a specialist answer for me WHY this happened when my numbers were so good.  I guess the myeloma can get busy behind the scenes and shape-shift to such a degree that it no longer puts out the protein which is what they measure your disease progression with (M-spike).

So in one month I’ve gone from thinking I was at remission and feeling pretty good about that, to having this thing sort of taking over my entire life again.

So  . . .  what we are doing . . .

I’m set to begin a 14 treatment course of radiation next Monday.  I went for the setup today.  They can’t get me started any sooner.  Then after that I will start Dr. Chen’s recommended treatment of a four-drug combination which has cured several of his other myeloma patients of plasmacytomas.  He is most confident it will work and wants me started on it ASAP.  I always like to delay the taking of drugs, but can really feel the need for it; if something isn’t done, and quickly, I will no longer be around (and quickly).  So time is of the essence.  And before that, I need to have a port surgically implanted in my chest.  That is a device, sort of like a pacemaker, that they use to more easily give you IV infusions.  This is a several hour surgical procedure, and will also happen on a radiation day.

So I call this the summer of no fun for me.  My friends are in places like Alaska and Iceland, and my summer outings are to the overcrowded chemo room and radiation machine.  Oh well, let me not lapse into feeling sorry for myself and try to find the blessings in each day, no matter how small.  You don't need to be on top of a mountain or viewing amazing scenery to feel God's presence.  When I need inspiration, I read scripture or look to the daily offering from Pastor Steve Garnaas-Holmes' Unfolding Light poems.  He has a way of getting to the heart of what's real and what matters.

So please pray for me to weather and get through this fifth major crisis since diagnosis.  I got through the other four and lived to tell the tale, but somehow this seems qualitatively different.  My system feels weaker from all the previous treatments.  (And part of me even possibly suspects at times that this could be from all the drugs themselves, which can cause secondary cancers.)  But that is just conjecture, nobody knows what makes myeloma resurface or become aggressive.  I like to blame myself for this, that or the other . . .  “If only I’d eaten this way, or taken that supplement . . .”  But it really doesn’t matter at this point, as it’s all hands on deck to deal with what’s going on and I can think about it later.

Thank you for your concern, love, and prayers for healing, it means a lot to know you all care.

One cold after the next

Time for another blog update!  (I seem to start every entry with that)  I’ve been seeing Dr. Chen now for three months, and have had the Darzalex and Vitamin C infusions (25g) three times, to continue the maintenance.  It seems to be going pretty well in that my numbers are excellent and the m-spike remains at 0.1. 

Except . . . the immunoglobulins are low.  They have been consistently low for quite a long while and this can be the result of the myeloma itself, apparently, or it could be because of the Darzalex.  Despite lots of reading, I can never seem to wrap my head around how the immune system works.  It’s so complicated.  But the IgGs are now very low, and it means a much greater susceptibility to infections.  Apparently, they do not tend to rise back up on their own, even though myeloma is now gone.

I have had one sore throat/cough/cold after another since January, four in all.  This is very concerning to me, as I just can’t seem to shake it.  As soon as it goes away, in a few weeks it’s back again.  Despite my white blood cell and red blood cells counts being in normal range.  I guess these immunoglobulins are all important.

I went to consult with Dr. Gignac this week, the naturopath who works with Dr. Chen.  He had some suggestions of things to take to shore up my immune system and get rid of the persistent upper respiratory infections:

• A new version of the mushroom supplement AHCC, Immunokinoko, which he said is hands-down the most effective of all mushrooms against bacterial AND viral infections.  So even though it’s expensive, I have a six week course of that;
• A new version of curcumin, called Tetracurcumin, developed by the man who does Thorne Research supplements, 39x more bioavailable than the other types;
• and Vitamin C, three times a day.  That’s an easy one.  I thought because I was having 25g along with the infusion that would be sufficient, but Gignac said it clears out of your system after about four hours, so is required throughout the day.

Let’s see if this all does the job and my immune system can rise to the occasion and I can manage to stay healthy for awhile here.  If not, I will probably have to have a monthly infusion of immunoglobulins, and I don’t relish that idea one bit.  But it may be necessary, we shall see, fingers crossed.  This is the last piece of the puzzle for getting healthy, all my other numbers look pretty good right now.  Will report back, of course.  Thanks for reading.

Vitamin C replaces Pomalyst

Time for another blog update!  After seven or so months, my M-spike remains at either 0.1 or 0.2.  And I’m told that is because the Darzalex creates a little bit of a reading by itself (background noise, they called it).  So it looks like I am at remission.  I continue to take the four hour Darzalex infusion once a month, along with Dex (the stimulant steroid — can’t seem to get away from that horrid drug — it takes me four full days to recover from it).

I switched to a new integrative oncologist, who is letting the Pomalyst be dropped and giving instead a 25G Vitamin C infusion before the Darzalex.  After one month on this my M-spike went from 0.2 to 0.1, so it is effective.  I’m so happy to be done with the Pom and can really feel my energy and stamina starting to return.  Though after a year on Pomalyst, I’m still feeling a bit run down from that rather strong drug, a derivative of Thalidomide — yep, that’s what we myeloma patients get!

The immune boosting Transfer Factor has been dropped for now, it was too expensive and I couldn't tell that it was actually doing anything.  Apart from a food-based multi vitamin and a few other basic supp’s, the four main anti-myeloma supplements I’m taking are:

Magnolia Bark/Honokiol  (Dr. Uzick initially asked me to take 9 of these a day, and I’ve whittled it down to only one or two — Honokiol is shown in studies to be effective against myeloma cells)
Ashwagandha (wonderful for sleep)
Curcumin (just 1g of an ultra bioavailable one)
Reishi mushroom extract (400 or 800 mg/day)

I’ve also been enjoying reading some of the Medical Medium’s books, and he has a recommended list of anti-viral herbs, which I enjoy as a tea on a regular basis:  Nettle, Red Clover, Mullein, Star Anise (the most beautiful thing!), Licorice Root, Lemon Balm and Feverfew.  This tea really is helpful.

And, I’m making a serious attempt to give up dairy products.  These are sort of the last holdout for me, but I felt so much better the minute I did it.  I replaced the yogurt I was addicted to morning and evening with a morning protein smoothie loaded with superfoods and wild berries, and not only is this great tasting, it is filling and kind of super charging, giving more energy during the day.  I’m allowing small amounts of goat or sheep cheese, which is remarkably good.  I don’t miss the yogurt or greasy cheddar cheeses at all.  Along with trying to be dairy free, I’m also about 99% sugar free (except for special occasions), and mostly gluten free also (except for the wonderful all organic dark sourdough rye bread they have at Whole Foods — this is just too good to give up!).  I feel so much better on this diet and won’t miss pizza if I don’t think about it. 

So that’s the regime for now . . . subject to change as time goes by.

Well, that was over before it started

Unfortunately, I have had to quit the CBD oil, after just two weeks.  I had great hopes that this was going to get and keep remission going for me, as I have seen a number of anecdotal reports that it has helped put myeloma patients into remission.  However, it quickly exacerbated a low pressure situation in my eye.  I had forgotten completely that cannabis taken regularly can be used to treat glaucoma (high eye pressure).  After having developed that from four severe uveitis flareups almost fifteen years ago now, I had glaucoma surgery ten years ago, then a second surgery three years later to correct low pressure from the surgery.  Low pressure is equally as harmful to vision as high pressure.  The pressure has been holding at low-normal ever since.  This is the first time it has dropped down again, which was kind of scary.  The ophthalmologist said I might need another surgery if it didn't come back up.  I had taken a dropper full of the CBD just before going into the ophthalmologist’s to have the pressure checked.  Duh!  No more CBD, and will re-check pressure in a month.  It’s possible it could be going low on its own, but I doubt it, it was normal two months before that.

The good news is that my M-spike came down even further this past month, to an almost negligible 0.1 from 0.2 the previous month.  The Holy Grail of remission is within sight!  I have no idea if two weeks of CBD oil helped with that, but I sort of think it did.  So anyone who reads this with myeloma who does not have low eye pressure, I think I could recommend the CBD oil to help keep numbers down.  Man, it was wonderful for mood and depression, you feel really good on it in an undefinable sort of way.  It felt very nourishing to all aspects of my body.  There was no THC in it, so it wasn’t like being stoned, just a very mellow, positive sort of feeling and it sure did help with sleep also.  I’m very disappointed I can’t continue with this.

However, there are other things to try.  Transfer Factor, an immune system support, will be added to Honokiol and Reishi mushroom extract now, as the main immune supporting anti-myeloma supplements.  My old oncologist, Dr W, was a fan of Transfer Factor, so am encouraged to try that next.  Watch this space.

And of course will continue with the Darzalex once a month for as long as the doctors recommend that.  I’m still doing 1mg of Pomalyst for 21 days each month but am going to see if I can space that out to every other day, and then drop it completely.  I need a break from drugs!

And . . . I’m thinking of transferring to Seattle Cancer Care Alliance for my oncology care, where a lot of the latest research is going on.  I feel very blessed to have this world class institution available here, so close by.  (And the Medicare insurance to cover it — all people should have this — I’m an advocate of single payer health insurance for this country, so everyone can be equally as well taken care of.)  The doctor I chose there is doing research on radioimmunology, where a tiny dose of radiation is delivered to the myeloma cells only, and I think this is very interesting.  So if myeloma comes back, I would like to try that in the future, if I’m a candidate.  We shall see.  Meanwhile, I need to build back up some strength to enjoy this remission for as long as it can last.  Love to all. 

Back from the edge of the cliff

Six months into the Darzalex/Pomalyst/Dex regimen, things are looking good.  My M-spike numbers are down to 0.2 now, which is the lowest it’s ever been since this has been tracked, starting in 2004.  That’s so close to remission I can see it on the horizon.  (or more like around the corner)

I really want to stop the Pomalyst (21 days a month), though Dr B would have me on it indefinitely I think, as a maintenance plan.  But I have my own plans about how to get off it, see next paragraph.  I really don’t want to do a toxic drug on an ongoing monthly basis as maintenance.

So I am starting a custom treatment plan from a doctor in Portland who knows how to work with cannabis oils for cancer (Christian Lé M.D. at Green Earth Medicine).  If this is tolerable, I want to keep up with it and have that work on the immune system, along with the Reishi mushrooms a cancer-literate naturopath recommended, and also Magnolia Bark/ Honokiol, another cancer ND recommendation.  These two, along with curcumin, have studies showing their effectiveness against myeloma cells.  That’s MY remission plan!  And to keep up the monthly Darzalex infusions.  But Pomalyst has got to go!  It’s making my hair fall out, causing fatigue and bruising, as it pulls down the red blood cell count along with wiping out the myeloma cells.  It is time to heal my system from the ravages of these drugs, which have saved my life over the last six months.  But now the time has come to regroup and rebuild.

I feel like I’ve been given my life back, once again, from “the edge of a cliff” as my doctor put it.

I’ll report more soon on the effects of this CBD oil and if/how it has worked for me.  There is no psychoactive effect from it, as the THC has been removed, it is just cannabinoids.  Of which there are several hundred, most unstudied, according to this very knowledgeable doctor, who specializes in this exclusively.  He can tailor the formula to fit one’s specific cancer.  It doesn’t taste very good, and sometimes I rub it onto my skin instead, which makes me smell like a pot plant!  Or one of those guys who smoke so much weed it’s in their clothes and hair and they reek of it.  It’s not that bad, though.  Welcome to the world of medical marijuana, Joy!

Update one year later

It has been a whole year since I put up a blog post!  A lot has happened on the health front.

After about two months of relative stability following the last chemo regimen, my numbers again started to climb, and at the beginning of this year, 2017, quite dramatically.  At first I was looking for causes for this:  Was it too much stress?  Did I get too much toxic exposure?  What have I done wrong?  Am I eating the wrong things?  But this is just the nature of Multiple Myeloma, it sits quiet for a while then regroups and can come back with a vengeance in its own time.  This appears to be what happened.   Especially since none of the previous treatments I’ve done have gotten rid of it completely, there was always something left there ready to re-grow and take over again.  It's like living with a ticking time bomb in your bones.

Hence it was time for another round of major chemotherapy treatment.

So, medical details below, you can skip this part if not interested in the drugs, etc.

I have a new oncologist now, a myeloma specialist, Dr. Bensinger at Swedish Cancer Institute in Seattle, and he is overseeing my taking the immunotherapy drug Darzalex, which I’ve wanted to do ever since first hearing about it.  This is something that tells your own immune system to target a specific protein on the myeloma cells only, rather than using a drug to do the job.  It’s a five or six hour IV infusion once a week for eight weeks, then every two weeks for eight weeks, then once a month until six months is up.  It gets easier and shorter as time goes by.  The first one was a real bear with some very weird side effects, but they say that is to be expected for most people.

Dr B believes in the “three-drug-combo” as being much more effective than the Darzalex alone (85 or 90% chance of remission compared to only 33% if Darzalex is used alone), so I am also doing a rather strong thalidomide-derived chemo drug called Pomalyst with it, along with the dreaded Dexamethasone steroid once a week (kind of a booster for the other two). The side effects of this Dex are like a roller coaster and take a full four days to wear off, leaving only a short time each week to feel like a "normal" person before you start the process all over again.  Whoever invented it obviously never had to take it, and it seems to be a feature of all myeloma chemo regimens; the doctors love it because it makes things work better.

All this has me quite wiped out with very little energy and stamina, because the Pomalyst has dragged down my WBC and RBC counts to a dangerously low level.  This has required two blood transfusions and strict instructions not to go out into crowds or anywhere there’s too many people, lest I catch an infection.  So I’ve been in a kind of quarantine at home for a month or so now.  I’ve been pretty weak and shaky from the anemia, so don’t want to go out much and do things anyway.  Just one of those times to be got through knowing there are better things ahead.

But . . .  the good news is . . .

The “three drug combo” (sounds like a McDonald’s meal), and especially this immunotherapy Darzalex, is working extremely well for me.  Both the doctor and his assistant were thrilled when they saw the drop in my numbers and said I am having a fantastic result!  So this will all be worth it when it’s over and it pretty much looks like I could be headed for that promised land called REMISSION.

Some people are lucky, they do a short spell of chemo when first diagnosed, get into remission quickly and stay there for years and years.  (I know two such people.)  I have not been one of those lucky ones, my disease seems to keep returning with regularity (this will be the third major chemo round for me).  But if we can get these cells completely under control, something the other two plain drug regimens did not do, it will be a lot easier to keep it that way.  At least that is the plan.  These new immunotherapy drugs can work wonders.  They have made great strides in developing these for myeloma in the past few years, and even more and better ones are in the works.  I’m very grateful to have the opportunity to do this and the insurance to pay for it.

I have my ideas of what natural treatments I want to do to bring strength and wholeness back to my body after this intense drug induced “time out” from what used to be my life, and keep remission, but that’s another post!

Once again, a big “Thank You” to my sister for driving me every week to the Swedish Cancer Center for the infusions.  Couldn’t have done it without you!

Oh, and I’m enjoying reading a book by Toni Bernhard called How to Be Sick.  I know that’s a terrible title, but it’s a Buddhist-oriented take on how to deal with chronic illness and contains much wisdom and inspiration to learn acceptance and joy even in the most trying of circumstances.  I recommend her books.

Ups and Downs

Quite a lot has happened since the last update, both good and bad. . . .

First, the good:  As I mentioned in the previous blog post, I started chemotherapy last September 1^st, and was put on first the Kyprolis/Dex for four months (an IV infusion over two days a week), and now am on a simpler regimen of Revlimid/Dex (a daily pill, 21 days a month).  This heavy hitting drug regimen has had the effect of reducing the myeloma numbers to almost zero!!  My numbers have not been this low since before tracking them began back in 2005.  So for this I am very grateful and somewhat amazed, as I never quite thought this could happen for me, remissions were what other people got.  All I ever did was watch my numbers slowly creep up as the years went by.

Side effects have been there, but really not too terribly bad a price to pay to watch my numbers drop and feel no more discomfort in my bones.  My hair did NOT fall out (yay!!!), but I’m pretty tired most of the time, the white blood cell count being very low due to Revlimid.  And there's been some "chemo brain" on bad days, when I don't know whether I'm coming or going.  But that’s about it, really.  I get a seven day break from the Rev each month and by the end of that the energy starts to return and I start to feel more like my old self, so I know this is a temporary thing.  I’m hoping to go off it all soon, once this final stretch is complete.

Rather than seeing these chemo drugs as the enemy, nasty things full of toxic chemicals, I’ve tried to view them as the agents of my healing, and indeed they have been.  They have brought me back from the brink of the abyss last year, and therefore I am very grateful to them.  And of course my good doctors who are making a fortune prescribing them.  It’s astonishing how expensive they are, and I thank God for good insurance coverage, and the wonderful charity The Leukemia & Lymphoma Society, which pays my drug co-pays (I had a $7,000 co-pay bill for three months of Kyprolis last year!!)  (Twenty-one pills of Revlimid cost $10,000 — people go bankrupt trying to pay for that drug.)

The not-so-good:  Last winter a tumor had developed on my left shoulder joint (called a plasmacytoma).  It had been hurting for some months and I thought I just had bursitis or something, so neglected to have it looked into.  I am learning that if there’s any unexplained pain that doesn’t go away and only gets worse – get it checked out properly with x-rays and/or MRI.  This caused the shoulder joint to break quite severely when I put pressure on it trying to get up from the floor (me and floors don’t get along).  So I spent three weeks in hospital having radiation treatments to take care of that tumor, with my arm in a sling, unable to move it.  And after that, three weeks in a rehab center (also known as an alternate universe) hanging out with the Alzheimer’s patients.  Still with the arm in a sling and unable to move it. 

Do you want to know the absolute worst thing about being in hospitals and rehab centers?  Not being able to take a proper shower every day and wash your hair!  The little Vietnamese lady at the rehab center, Mai, who gave people showers that felt like being in a car wash, was one of the more interesting things about this whole experience.  (The rehab place thought a shower once or twice a week was all people needed — arrgghh!!  And in the hospital you can just forget it altogether.)  During this time I was heavily medicated on oxycodone every day, the same opioid drug all the news headlines are talking about as causing such an addiction problem.  Every four hours they'd give me another one, even during the night.  Gradually, as the pain lessened in the arm, I was able to wean myself off this highly addictive drug, but it took about three months.  It wasn’t until the last pill ran out on the prescription and I had told the doctors not to renew it, since I actually didn’t need it any more, that I was finally able to stop.

It’s been five months now since the break and the arm is back to about 2/3 of it’s previous ability, thanks to twice weekly physical therapy and just time.  The osteopath said it would be a “frustratingly long” recovery time, and he wasn’t wrong.  I feel like I’ve been in the strangest limbo.  Not being able to take care of yourself is a major thing, and it’s only been a month since I started driving again and living back on my own, doing all the shopping, carrying the grocery bags, cooking, etc.  All the while still on chemo.  But it’s starting to feel like my old life is returning, just rather slowly.  I’ve left the crushing heat of Arizona and am getting resettled back in the Seattle area, also a slow process.

I would like to say a word of thanks to some of the people who helped me the most during this past year:  Steve Ross, indefatigable driver and reader of good stories; my sister Terri, wonderful cook and shopper; Irene Haitsma, finder of great apartments and mover of large boxes, and my long time friends Richard & Susan, Amy, Linda, Tové and Sylvia, for exceptional emotional support and good Indian lunches.  And of course my incredible mother, whose love and support and spiritual inspiration never wavers.  Where would I be without you all.

None of us knows the twists and turns life can take (I was tempted to add “breaks” into that phrase, but will avoid the bad pun).  People often comment they think I am very “strong” to be able to put up with all this.  You just go with what is being given to you at the moment, trusting in God and His wisdom for your life, and know that nothing lasts forever, everything changes, usually by the minute.  If you hit the rapids now and again, I know that there is a peaceful eddy just around the corner.

The odd thing is that I find these episodes of extreme situations easier to cope with than when things get back to more “normal”.  I’m not sure why that is, but in situations like that you really have no choice but to let go and surrender to whatever’s happening.  It’s day-to-day life that proves more of a challenge, because I think I have to figure it out and make things happen myself.  The only thing I really need to figure out is how to carry that feeling of grace and being cared for over into everyday situations, the old “let go and let God” advice.

Okay, time to stop rambling.  If you’ve read this far, God bless you and I hope you have a peaceful day enjoying the lovely spring which is upon us this year.  Hopefully more good news will be following in the next blog post, whenever that may be.  And I’m not getting up off any more floors any time soon.  

The turnaround

Just a short update here.  The twice weekly Kyprolis/Dex IV infusion treatments are going pretty well and bringing the myeloma under control, that’s the main thing.  The kidneys are slowly coming back to normal from their near shut-down due to excess myeloma cells, and I’m able to drink water a little better now, though still not enough.  The nausea and throwing up has finally stopped (thank God!!), that was getting really scary there for a few weeks, could hardly keep any food or even water down.  Sometimes even one sip of water would send me to the toilet vomiting.  The kidneys are very important!

So the appetite is returning to normal, and I’m weaning myself all the junk food I had to eat to get through that episode . . . for some reason all I wanted to eat was potato chips, oranges and chocolate milk!  Well, I’m discovering electrolyte replacement drinks are giving me the postassium and other minerals I need to get off those things, so have been experimenting with various ones of those, coconut water, etc., to get rehydrated after the weeks of vomiting.  So every day I take one of those, and am slowly taking a few more basic vitamin supplements as well.  But only a fraction of what I was taking before, I cannot overload my system with excess supplements right now.  Healthy food is finally starting to taste better than junk food, tho still can barely look at a vegetable.

Unfortunately, my hair is starting to seriously thin out from the treatments, and this has been more upsetting to me than just about anything, not knowing if it’s going to go all the way or what.  So am getting scarves and a hat, just in case.  It will grow back once the treatments stop, it did last year after I stopped five months of the Velcade.  Vanity trumps all, it would seem.

But at least things are on the improvement.  The oncologist said I had a “lucky escape” this time but personally I feel it was the prayer of everyone who has prayed for me to pull through this episode, not blind luck, that has helped turn things around.  That, and the ultra-expensive drug I’m getting pumped into me every week.  So thank you all for your prayers, and please continue to keep it up thru these chemo treatments until remission and there is no more myeloma blog here. . . .   Love to you all.

The summer from hell

Lots has happened since the last update.  First of all, a HUGE THANK YOU to all those who contributed to my health care costs via the GoFundMe campaign and the Holistic Healing Foundation.  I have such wonderful friends and family, such a blessing you all are.

Okay, here’s the long and rambling story . . .  In late June, I went onto Velcade again for five weeks, which was not a success (see below post).  Shortly after I started it I contracted pneumonia from Valley Fever and it has been a long, slow recovery from that, during the hot hot summer here in Arizona. Valley Fever is a fungal infection specific to the Southwest desert regions and is transmitted from blowing spores through the wind.  Trust me to come down here to this good-air environment and catch that stupid thing.  They say most people take about 6 weeks to get over it, but for someone with a compromised immune system it can be a major disaster and take much longer.  So I have been resting a lot and am trying to take it easy and haven’t been able to do my daily outdoor walks due to the heat and just being run down.  I’ve even gone off all my supplements, as they just are not tolerable any longer.  (and sometimes I think I feel the better for it!)  The first month with Valley Fever was very rough, with fever, sweats, nausea and extreme fatigue my daily companions.

Having gone off the Velcade, when I went to check in with the oncologist earlier in September, my myeloma numbers had shot up considerably, so he now wants to start a three drug combo which are the heavy hitters (Revlimid/Dex/Krypolis), supposedly very effective against myeloma in this combination.  I was all set to begin this, and even had the very expensive Revlimid prescription Fed-Ex’d to the front door ($13,000 for a 21 day supply!  Fortunately my co-pay was $6.16, but some people are having to pay that!).   But I was so run down from the Valley Fever, that I was afraid to start.  I went to consult the naturopath and he didn’t think I was strong enough either, and that it could be dangerous to depress my immune system again, as the fungal infection could then go out of control. So we were trying to get this infection and the pneumonia under control before hitting my system with heavy chemo drugs, by using high dose Vitamin C infusions again and, when I was strong enough to handle it, an anti-fungal drug (hard on the kidneys/liver). 

I do believe what happened with the Velcade is that it depressed my immune system to such an extent that the Valley Fever set in.  The fever is now gone, but the nausea is still with me almost two months later, as well as being very weak from it all.  I also got very dehydrated over the summer.  The only upside to any of this is that I have lost about 20 lbs. since food looks like a foreign substance to me at times, and am at a weight I haven’t seen for 25 years!  But this really isn’t the best way to lose weight.  Some of it is now coming back as all I really want to eat is sweet stuff, saltine crackers & ginger ale, iced juices etc.  Too many carbs, but vegetables make me queasy to even think of them most of the time.

So I’ve kind of felt stuck between a rock and a hard place:  if I don’t start chemo the myeloma is taking over, and if I do, the V. Fever could cause more havoc.

An update to the above (written a couple weeks ago but not posted yet) is that my kidneys started to fail due to dehydration and excess myeloma cells, which have really shot up in number since all this began.  (so much for Velcade)  My oncologist basically laid it on the line for me and said unless these myeloma numbers get under control, nothing else is going to have any effect, and the time for natural treatments is passed.  It’s drugs or face the consequences right now, so I don’t feel I have any choice but to go back on what he’s recommending.  I had been trying to hold on for the antibody therapies to become available in six months’ time, but he said I do not have that much time to wait untreated.  So had the first two infusions this week (minus the Revlimid, thank God, that expensive beast sits on the shelf – I could sell it and buy a car for what it costs!).  So I am in recovery from that at the moment, it has really shaken my system up, and it’s administered over a two-day IV infusion.  Tuesday/Wednesday are treatment days.  I must say the Univ. of Arizona Cancer Center have been very good and have an excellent facility if you're doing this drug route.

So, not the prettiest picture at the moment, it has certainly not been an easy summer.   Sorry for rambling on here, I’m just trying to explain a complicated situation.  Hopefully by the next time I write things will be a lot better.  The Krypolis/Dex alone should help the myeloma get under control, it’s just a matter of riding out the side effects and praying for Valley Fever to keep at bay and not flare up again.  Will try and post more updates as time goes by, sorry for not saying much lately, but I’d been so tired from it all it was hard to explain it while in the middle of the storm.

Love to you all who have taken the time to read all this.

Joy

Back on Velcade

Well, another round of chemo has begun.  The myeloma made a slow but steady comeback, so, a year almost to the day that I stopped the last Velcade treatment, I’m back on it.  There will be some changes this time, though.  The doctors love the “three drug cocktail” (Velcade + Revlimid + Dexamethasone, a strong steroid).  They say it works synergistically to enhance the Velcade.  I had such a hard time with the Dex last time, it was very intense and crazy, so this time I have elected not to take it, or the Revlimid, which can cause a detached retina.  Those of you who know me well know what I’ve been through with eye inflammation (uveitis) and I am not risking any damage to my eyes from this.

What I am taking instead are several synergistic agents which are natural, at the direction of my naturopath.  He told me there are actual studies to show these work to enhance the effectiveness of Velcade.  (What they are:  Curcumin, Wobenzym pancreatic enzymes, L-Carnitine, PectaSol citrus pectin and magnolia bark.)  I’m going to see how these work this time, instead of the Dr Jekyll/Mr Hyde crazy-making Dex, that was an absolute nightmare of a drug (jittery, insomnia, unreasonable anger and intense emotions – for days and days).  That first round of Velcade/Dex last year only brought my m-spike numbers down by half, so I didn’t get anywhere near remission.  This time I figure I haven’t got much to lose by trying these other substances with it instead.  

I’ll try and keep up more of an update here so people can know if this natural supportive regime works as well, or better, than the heavy drug regime.

Vitamin C and clean desert air!

Profound apologies for not updating my blog recently (if anybody’s even listening!).  I’m doing okay, despite climbing M-spike numbers.  It appears that five months of chemo drugs last year didn’t really do much to halt the progression of myeloma for me.  I may have to do another round, but am trying to hold out for the antibody therapies which will be available in a year or so, and are much less toxic.  These basically teach your immune system to find and destroy the cancer cells, like it’s supposed to do in the first place, and are far less damaging to the body than the drugs.  There are some great results coming out from the clinical trials and both my oncologists are excited about this line of treatment – coming soon!

Meanwhile . . .  I have found a wonderful oncological naturopath to work with down in Arizona, Michael Uzick.  A link to his website and clinic is over on the right.  He has been giving me high dose Vitamin C IV infusions twice a week for several months now (50g at a time!), and put me on some interesting immune supporting supplements, such as a mushroom complex (AHCC) and a cancer fighting mineral (germanium), as well as pancreatic enzymes.  Other immune helpers he has me on are magnolia bark and low-dose Naltrexone (google it, this is a drug which helps auto-immune conditions and has put people into remission from cancer just on its own).  Interesting – but expensive! – stuff.

The good news is that all of the above has HALTED the progression of the myeloma in my system.  We haven’t quite started to reverse it yet, but just putting the brakes on it in a natural way is a major step forward.  I tried so many things on my own (see all the previous posts), but without professional guidance, none of it came to much.  But with Michael Uzick’s help, things are really starting to turn around.

I’ve also been staying with an old friend in a very pristine, clean-air house and environment here in Arizona, which has aided in my healing.  The air quality out in this high desert is awesome . . . but must watch out for the rattlesnakes and scorpions!

So that’s the update on the medical front for now.  I promise to post more regularly as to the outcome of Michael’s regimen.

And lastly . . .

I am having trouble affording all of the above (it’s running at well over $1,000 a month), so there is a little charity where people can make donations towards alternative health care costs for myeloma in a tax-deductible way.  If you would like to help me with these costs, in even a small way, please take a look, and donate if possible — I would be so grateful.  (On this website, there is a place on the second page of the PayPal donation form, and also on the mail in form, where you can put my name.)

Love and blessings,

Joy

www.holistichealingforcancer.org

Just Checking In . . .

I have been ignoring the blog lately . . . sorry.  Sometimes you just don’t feel like talkin' about it, ya know?

Anyhow, I got through five months of weekly Velcade/Dexamethasone, what a roller coaster ride that was.  That Dex is a humdinger of a drug, it really turns you into an entirely different beast.  I’m finally starting to feel like myself again, after five weeks off it.  The drugs brought the M-spike numbers back down into the MGUS range (yay!) but they are not as far down as Dr W and I would have liked.  Some people get complete remission on this combo in just a couple months, but I guess that was not to be me.  After one month off, he re-checked the M-spike numbers and they had gone from 2.3 back up to 2.6, so close monitoring is going to be needed here.  I’ll see him every six weeks for that, and a Zometa infusion.

Meanwhile, life goes on as best it can.  I’m grateful for what functioning I do have, though have been very tired lately.  I got a far-infrared sauna (www.therasage.com) and have been using that a few times a week, but it makes me feel very tired, sometimes for days afterwards.  So I might have to back off using that quite as often, perhaps once or twice a week instead of three or four times.  Sometimes you can overload your system with too much “detox”, especially if the detox pathways are broken (as is the case with MCS).  An interesting article on the Therasage website tells how/why heat therapy is useful for cancer:  http://therasage.com/blog/cancer-therapy/

My next tactic is to start using Essiac tea on a daily basis.  It’s an ancient Native American recipe known to cure various cancers.  I ran this by Dr. W, who has a very open mind about all things alternative, while maintaining his bemused, skeptical AMA-doctor attitude.  He actually said some of his other patients have had a good response to it, so he was in favor of it.  It’s not difficult or expensive to do, so that is my latest thing to try now that the drugs are done.  Took the very first dose this morning!  It’s supposedly an excellent blood and liver cleanser, so that can’t be a bad thing.  This was recommended to me by someone who has had a 15 year remission from MM using this exclusively.  (Thank you CH!!!!)  I’ll let you all know how I get on with it.

Onward through the fog . . .

Well, I have been through over a month now of the Velcade/Dexamethasone regimen, and seem to be surviving it alright.  It's an interesting pattern, the Dex is a pretty powerful steroid and has stimulant properties and I didn't think I'd be able to handle that at first, since I am very caffeine sensitive.  But I seem to be able to sleep alright on it, whereas a lot of people don't.  For which I am very grateful.  But it sure turns me into a hyperactive, emotional mess the next day.  Everything is just way more intense and I rush around like a mad person from thing to thing, accomplishing very little.  Then by Day 3, like the werewolf reverting back to a human being in those old horror films, normal-ness begins to take over again, the fangs and fur melt away quickly.  So I'm having about four days of normal functioning and three days of roller coaster ride, but it's a small price to pay to wipe this myeloma out of my system.

And it does seem to be working according to the Dr.  My numbers are responding, there was a 20% drop in the M-spike in the first month alone, which he considers a good response, so I'm pleased.  I sometimes feel like I've entered a strange, alternate universe with a small light at the end of the tunnel, but at least there's a light.  I sat next to one poor fellow (much younger than me) in the chemo room the other day who had had every single combination of every myeloma drug and none of them had worked on him.  I felt so bad for him, and equally grateful that my situation is not that dire, and hopefully will not be.

Most people really don't have a clue about diet or supplements, though, and I do think a lot of the things I do in that regard are helping.  Neuropathy is one of the main side effects of the Velcade, and I did have a couple of very nasty experiences with it at the beginning.  So bad that I was afraid I wouldn't be able to continue, as has happened with others.  So I decided to go on the attack against that as I didn't want it to derail the whole regimen; I've dealt with peripheral neuropathy for a good 15 years now (no doubt caused by the growing myeloma situation, without my knowing it), and have a number of little things I can do to make it better, which seem to be working.  Doubling up on B Vitamins on the Velcade days is one of them, and doing a hot foot soak with epsom salts and hydrogen peroxide that very night is another (those pull toxins out).  Those two things alone have made the neuropathy no worse than usual, or at least very tolerable.  And of course staying strictly gluten free is the number one thing to control neuropathy in my case, if anyone reading this has this problem.  Without that, it would be hell.

Okay, that's probably way TMI, so that's enough for now.  Onward through the fog, as I like to say . . .

"Treatment" has begun!

Well, I have made it through the first Velcade/Dexamethasone treatment.  (It appears the politically correct way is to now refer to it as "treatments" not "chemo".)  My Naturopath Dr. Gignac had told me that these drugs I'll be doing are 98% better than the other more toxic chemo drugs, as they are targeted agents, which means they only go after the myeloma cells, not my entire immune system.  But still . . . man, they're potent!  Totally wiped me out for two days.  But I'm feeling almost back to normal again today.

Dr. W, my oncologist, is wonderful, he knows just what to say, and he was very reassuring that I will be on this "treatment" until it brings my numbers back to zero or close to it and they are stable.  He said it would then probably take some years for things to build back up to where treatment was again needed, and by then even better treatments will be available, as they are making great strides all the time in myeloma cures.  So that was very reassuring.  So I just have to get through this cycle of treatments, however long it may last, and hopefully things will be a lot better for a long time.

Meanwhile, in order to clear out some of these toxins from my system, I found a page of detox soup recipes and am going to do one per week.  Plus the usual epsom salt baths, coffee enemas, smoothies, herbs, etc.  And I want to get a sauna!  More about that later.

I've ignored the blog of late, will try and post here a little more as "treatment" progresses.  Pray for success, please!

One step forward and three steps back

I had a very disappointing check-in with the oncologist this week.  I've been really pulling out all the stops these past couple of months with the natural cancer cures (Black Seed Oil protocol - full dose; Dr. Gonazales' pancreatic enzymes - 20-30/day; and of course the much-discussed ketogenic diet).  I thought for sure my numbers would have come down quite a lot, or at the very least just a smidgen, particularly since I'd been feeling such a whole lot better. 

But no.  Not only did they not go down, they increased by the biggest margin yet, in an even shorter time than usual.  It was quite a shock, that's for sure.  It looks like drug therapy may be my only option at this point.  I certainly gave it my best shot with all the natural cures.  I'm on over 20 supplements a day, and I really thought this diet change was going to be key.  I didn't get fully into ketosis other than just a little during the day.  It's actually quite hard to do.  But my carb intake is very very low now and that's what I attribute to feeling so much better.  So I guess I will stay on a Paleo type diet indefinitely and not try and do the full ketosis thing for now, just because I enjoy this way of eating and feel so much more energy from it.  (I'm adding two books about this to the book list over on the right, Wheat Belly by Dr. William Davis . . . highly recommended – at last, a nutrition book by a doctor with a sense of humor! . . . and Grain Brain by Dr. David Perlmutter.)

I have a wonderful oncologist, Dr W, and he makes me feel very reassured, that these cells can be wiped out using the various drug combinations they have for myeloma these days.  He says myeloma patients can live a long time now, it is one of the more "treatable" cancers.  So start date for that is January 13th.

Dr. W very kindly explained to me how these myeloma cells have an affinity for each other and like to clump together and get stronger that way, feeding each other the enzymes they need to proliferate, and that at a certain level, the immune system can't cope with them any more, despite all the natural cures.  He said when they were at a much lower level, these types of protocols can sometimes be useful, but once they get to a certain level, about all we can do is "go for the kill".  Then once they are down to a more manageable level, perhaps the natural protocols can help the immune system to cope with them a bit better.

We shall see.  Please pray for success, and that I can tolerate these medications.  I'll talk more about those when the time comes.  Meanwhile, I intend to enjoy the holidays and all the fun things I have planned this month, before we have to get down to business in January.

Back on track

I had a very good check in with my naturopath this week, Mark Gignac (there's a link to his clinic over on the right, if anyone with cancer is interested in consulting him).  He had seen the article I referred to in my last post by Dr. Gonzalez, and he spent some time explaining to me how and why Gonzalez was wrong on this subject.  Dr. Gignac is a big proponent of the ketogenic diet, and is actually on it himself I think, so he was enthusiastically encouraging me to continue with it. 

So I am thrilled to be back on it, as it really is making me feel so much better, if nothing else.  It's amazing what giving up grains can do for your brain!  (There is a good book called Grain Brain which I can't wait to read next.  Wheat Belly is also highly recommended.)  Now hopefully if I can just get this good clean feeling transferred to my bone marrow, we'll be in business.

Dr. G actually gave me about eight youtube links to doctors and researchers speaking about the usefulness of the keto diet for cancer, some quiet lengthy, which I can send to anyone who might be interested (just request it in a comment below).

I am also instituting Dr. Gonzalez' main enzyme therapy (pancreatic enzymes in high doses), since you can buy his enzymes online and don't have to visit his clinic in New York to get them.  I'm not quite taking the huge amounts he would have one take, but almost half (28 of them a day!).

So between these two heavy hitting anti-cancer therapies, PLUS the Black Seed Oil protocol, if my numbers don't start to come down I'll be absolutely amazed.  In which case I will just have to abandon myself to drug therapy. 

I was feeling quite depressed at the idea of having to give up this keto diet, since I had put so much emotional and physical energy into getting it going.  So now I feel really excited about both the enzymes and the diet, and am so grateful for the trusted guidance of Dr. G, who sees cancer patients all day every day, and really is up on a lot of stuff. 

Abrupt change of course

I guess it's time for another update.  I had the second bisphosphonate infusion this week (bone strengthening drug), a different, older drug this time called Aredia.  Very little in the way of side effects, so that's good.  These will continue ongoing, once every four or five weeks for probably two years.

But it's been a tumultuous few days, as I discovered from a source I really respect (Dr. Nicholas Gonzalez) that the ketogenic diet I was pinning all my hopes on for chasing away the myeloma, really doesn't work as a cancer cure.  It was like a bucket of cold water over my head.  I feel like I got on a train heading one direction and picking up a good speed and then it just slammed on the brakes and had to reverse course.  I had put SO much energy and planning into that diet, and was 2/3 onto it.  It isn't easy to change your food around.

Here is a link to Dr. Gonzalez talking about it, and his article.  Darn.  (well my first reaaction was more like s***, but I'm too polite to say that here) 

One good thing that did come out of that experiment, however, was how much I like eating low-carb.  You feel so much more energy and clear headed, and my blood glucose came down about 10 points to a really good number, so anyone with blood sugar issues, take note.  Paleo is the way to go and I will hopefully be sticking as closely to that way of eating as possible (not as strict as ketogenic, but still low carb, slightly higher protein).  Dr. Gonzalez also recommends myeloma patients should eat more meat, not less, so that fits well with the Paleo way of eating.

So in a matter of a very few days I've had to come to the realization that it's most likely drug therapies for me in the very near future.  Having read SO many books about the dangers of chemotherapy and the benefits of natural treatments, this is hard for me to get my thinking around, that this is now the thing that will ultimately cure me.  The myeloma drugs aren't considered chemo per se, so that's one good thing, at least.  I don't have to associate them with the "evil" chemotherapy.  [apologies to anyone who has been helped by chemo drugs]  And everyone who has done them and come out the other side (complete remission) as well as my doctor, says it is very important to tackle this beast early rather than letting it get out of control.  Which it is starting to do for me.

Between now and the next blood draw (not for six more weeks) I'm trying a "hail Mary" pass of a last couple of natural therapies:  Dr. Gonzalez' pancreatic enzymes in the high amounts he prescribes for all his patients, as well as the Black Seed Oil cancer protocol.  If those have any effect whatsoever, we may have to recalculate course yet again and continue that path, but it's looking increasingly likely that the myeloma drugs will be in my future.

I had a very encouraging talk with a friend of an old friend in Miami who also has/d myeloma, and she went the drug route at first (taking Thalidomide to wipe it out, believe it or not), and she said you basically have to use the best of both worlds.  Tackle it quickly using the heavy drugs, then use the natural therapies to build yourself back up and keep it at bay.  She has been in Complete Remission (the gold prize) for over 14 years now.  So it looks like that, for now, will be the plan.  Unless there is some miracle with the enzymes and Black Seed Oil.

My first experience of the chemotherapy room

Time for another blog update, I guess.  I hope this doesn't go the way of my old journal, which I wrote in furiously for about six months, then abandoned completely for ten years.

Anyhow . . . I had the Zometa infusion about ten days ago.  That's the bone strengthening drug my oncologist is recommending I have once a month for a couple years.  Otherwise the bones are starting to get holes in them (literally), and this can heal the holes and prevent future ones.  It's something they also give for osteoporosis, only it's done more intensively here, as an IV infusion once a month, a high dose.  So I read up about this a whole bunch, and asked all the folks on the Myeloma page on Facebook their experiences, which were mostly positive.  There can be some very rare very nasty side effects, but overall, it's worth the risk not to have my bones spontaneously fracturing from holes in them.

I thought I'd gotten off easily with regards any immediate side effects as I felt mostly fine that evening, but boy the next day it was like I had the worst of flu's, could barely get out of bed, and was running a temperature all day long.  But by the following day I was almost back to normal.  So I'll see Dr. W in a few weeks and discuss progress, schedule the next one etc.

What was weird about it though was this infusion was done in the chemotherapy room at the oncologist's office, along with the other folks having chemo that day.  It was kind of an interesting atmosphere, some people only wanted to read and listen to their headsets (the chemo infusions can last quite a few hours), but others were into talking, so it was kind of a party atmosphere in a way. 

So I'm sitting there reading Wheat Belly, a book about the dangers of modern wheat, and this lovely volunteer is going around to the folks in the chairs passing out snacks, which are either cookies or candy.  I just cannot BELIEVE they would be feeding people sugar as they are having chemotherapy!?  I mean, WHAT is that about?  Everyone knows that cancer feeds on sugar, so they are literally feeding it with one hand and killing it with the other.  This doctor's office is so clueless  about diet sometimes that it amazes me.  They also have a big jar of hard candy in their reception area, more than one actually, and I mentioned that to them once, that perhaps this wasn't the best thing to be having around people with cancer, and they just said people's mouths get dry.  At the very least, they could have sugar free candies, and pass out some sort of snack that has no sugar, such as packaged nuts or something?  What about some nice fresh raw carrot and celery sticks?  Surely that wouldn't be too hard for the volunteer to arrange?  The level of ignorance when it comes to diet in a normal medical establishment is truly astounding.

Either that or they do know and just don't care because it keeps up the profits to keep giving people chemo, which would be creepy and evil beyond belief.  Suffice it to say I will be foregoing the jelly bellies during future infusions.  The phasing in of the keto diet is going okay, I'll post about that later.