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 occas…

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 pl…

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 ca…

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 goi…

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!

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 1st, 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

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

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.