My mind is totally clouded from Thalidomide. I can’t think at all and I am miserable. I took 200
I really haven’t done much knitting or crocheting this week but here’s what I have done.
Not quite another little aran baby cardigan and yes this one has has a boo boo in the cabling but you know what I did… I’m ashamed to say that I did repeated the boo boo so that it looked like the design rather than undo the front.
This is the start of a pram/cot (crib) blanket. It’s supposed to be knit on double pointed needles (dpns) but as I’m sure I’ve said before I don’t really do them. I think it’s because I’m a tucker ie, I tuck my working needle under my right arm. I’ve tried long dpns that can be tucked but it’s still too slow, I just can’t get a rhythm going and the thought of starting with 120 stitches but finishing with about ten split between three needles – urghhhh! So I decided to adapt it so I could use two. The first one worked fine but I went wrong with the second darker blue one and had to undo it. Well I say undo I’d sewn it up so neatly the end was well hidden so I took a pair of scissors to it!
And that’s been it other than a few rows of crochet and I still have these few balls to knit/crochet up…
along with a ball of red and green waiting at my local yarn shop! Better get my finger out.
I have had a thought which might help enthusiasm matters – I generally feel better later in the day from early evening so I thought I’d try and take my Thalidomide earlier tonight (I went with 8 pm) and see if that made a difference to when I perked up tomorrow. It’s worth a go.
Other creative spaces can be seen here.
Since my transplant I have been more prone to itchy and sensitive skin, particularly in the early days on my face and neck which would sometimes drive me insane. Also my eyes are red and itchy at times. Eye drops help lubricate and ease the soreness. This is quite common post transplant and could also be a post menopausal symptom.
However when I went on holiday to Tenerife within a couple of days I developed an all over skin rash (apart from my face). Have thought of several possible explanations:-
1. The massage oil used by the chinese woman who gave me an excellent massage on the beach.
2. The cheap factor 50 sun cream I bought over there because mine was confiscated at the airport as being over the 100ml size (what a rip off that is!)
3. Prickly heat rash – never had before but hey I am more sensitive now!
Whatever the cause the itching was chronic and I was quite often to be found rubbing my back against the artexed walls of the apartment to get some relief.
The friends I were with were also suffering with hay fever and runny eyes so they went to a pharmacy to buy some anti histamines and came back with some that had cost 13 euros which seemed very expensive. We all took them for our various complaints and after a couple of days none of us had noticed any relief of our symptoms. Upon further examination of the packet it turned out that these tablets were herbal remedies very cleverly packaged as pharmacutical drugs! So much for herbal remedies.
Skin rash aside I had a nice relaxing time in Tenerife, swimming in the sea and enjoying warm sunshine. Some photos below.
When I got back my rash started easing and I am left with some chicken like skin on the affected areas. Not very attractive!
It took me back to about 12 months ago when I got a severe skin rash halfway through on my first cycle of treatment . I had red blotchy itchy skin on my face, lips, inside my mouth and body. I came off thalidomide, allopurinal (an anti gout medication) and the anti biotics I was taking for a urine infection as the doctors weren’t sure what was causing it.
I was off treatment for about 4 weeks whilst my skin rash was so bad. My consultant wanted my skin tone to go from red to pale again before restarting. When I restarted treatment I was on a lower dose of thalidomide but after a couple of weeks I was complaining of so many side effects that I was taken off the thalidomide and consequently the myeloma XI trial. I was very disappointed and felt that my haemotology consultant thought I was a bit of a wimp for not putting up with the side effects and taking the medicine. She reassured me that she felt that coming off thalidomide was the best thing to do and although I didn’t tolerate it very well, it had knocked the myeloma down to a point where my disease wasn’t active. All this and I hadn’t managed to complete two full cycles!
When I think back to that period, it was hellish ….. the side effects, splitting up with my partner, the shakiness due to mental anxiety and the drugs, I could hardly use a pen due to my hands shaking, the nerve pain and I could barely walk due to low back pain, the mental confusion and lack of concentration. I don’t recognize myself as that person now, I didn’t at the time either, it was a surreal experience, like being trapped in a nightmare from which I could never wake up.
Before diagnosis, I had never been seriously ill, never been in hospital, never really experienced pain and was needle and hospital phobic. I used to feel slightly faint just visiting someone in hospital! In other words I was a bit of a WIMP!!
Now I inhabit with ease, a whole new world of injections, needles, biopsies, hospital appointments and stays. I know the ropes, I can look at my blood being taken without feeling faint, I have heard the words “sharp scratch” hundreds of times without worrying what’s coming next. I am called words like “brave” and “strong” by hospital staff, friends and family. I don’t think I am especially brave as I have no choice but to go through whatever is necessary to keep myself alive but neither do I think I am a wimp anymore!!
Treating Multiple Myeloma is somewhat simplistic. While there is tremendous complexity in the tailoring and performance of therapy, the idea is pretty simple: put something in the body that kills the bad cells. The things is, we haven’t really been able to find a drug that targets the cancer only. Our therapies all affect healthy cells as well as the cancerous ones, and that’s pretty much what makes chemotherapy a rough road. The general idea of targeting is to aim at the more productive areas of cells because cancer is a form of cellular over-activity. So many people have digestive issues because the digestive system is one of high activity under normal circumstances, and so becomes a magnet for the toxic action of therapeutic chemistry. I dislike using the word “drug” to describe chemo, simply because the medications are so toxic and unable to be accurately targeted to problem cells only. The use of these therapies, depending on the people consuming them, can affect all of the body’s systems, including the nervous system. That’s why chemotherapy produces peripheral neuropathy.
The chemistry applied to Multiple Myeloma has sen no huge breakthroughs, although the press might give an alternate perspective. For the last decade or so, the chemical landscape has not significantly changed. While new drugs appear on the horizon or draw near, they are merely analogs of the existing chemistry used on the front lines of therapy. We are learning to refine these drugs, and so each of the successive candidate therapies have become easier on the body. The greatest surge for the better seems to be subcutaneous injection rather than injection into a vein. It might be said that pretty much all we have learned amounts to how deep to press the needle when treating a patient.
But even as I summarize with a semi-flip attitude, the improvements are significant in the therapies in use and coming along in trials. Anything that enhances patient comfort during chemotherapy is a welcome change indeed; the greatest issues of my own therapy were the side effects manifested by the chemistry in use, in my case Velcade and Revlimid. Atop it all was the grand disappointment of the therapy having no effect, save revitalizing the cancer and speeding its progress. This pointing out the saddest fact of all the treatments: they are only effective for about a third of the people they’re used on. Still today, treatment results can be put in three categories which are success, failure, and no effect positive or negative. For all of the news we read about the advancements, each and all use terminology like “on the horizon” or “poised to find on the horizon.” So far, no one has been able to say cure with a straight face save a few sprightly effluent writers sensationalizing press releases from drug companies. However, those who do see improvement through therapy are seeing a greater level of success than they did previously. Perhaps 16% better in some cases.
But the fact is that there is no one medical response to Multiple Myeloma because not only does the cancer come in an assortment of manifestations, but the individual difference from patient to patient prevent it. For instance, my reaction to Doxorubicin was a nearly fatal pair of syndromes, anaphylactic and toxic shock. The way that my body greeted the threapy was as an all out Defcon One response that came very close to killing me. Yet others take the same dosages in the same ways and don’t feel a thing. My reaction to Velcade and Revlimid were similar, but at least tolerated enough to be able to go through months worth of cycles before the side effects became intolerable and life threatening. When that happened, we had to stop and take stock, and this is when we saw that the illness had progressed significantly and my oncologists recommended that I abandon treatment. I simply could not handle the therapies that science had to offer. I notice that the Mayo Clinic doesn’t include Doxorubicin in their list of current Multiple Myeloma therapies, in spite of the new offerings like pomalidomide are recommended to be used in combination with Doxorubicin as one of the first combinations suggested, followed by Revlimid and Velcade..
This is the big fly in the ointment. People are different and they react with different sensitivities or tolerances. We have yet to learn enough about the body’s physical systems to be able to accurately predict which treatment methodology is most appropriate to each individual patient. As such, it can be and often is said that oncologists and hemotologists are shooting in the dark when they design a treatment regimen. As the old joke goes, that’s why they call it practicing medicine. Effecting medicine is not something we can do yet because of the mysteries of individual sensitivity and tolerance.
Stem cell transplants make up a now common part of fighting Multiple Myeloma. However, the process is a very strenuous one and frought with risk. And like some chemical treatments, some people, again like myself, are not candidates for the procedure. In my case I cannot handle steroids; this is one reason that the side effects to chemotherapy were so traumatic for me. The addition or prednisone or dexamethasone can go a long way towards helping the body attain full benefit from chemo drugs. But steroid use is critical with stem cell transplants. Like chemotherapy, there are three catagories of reaction to transplants: it worked, It worked partially, or, it didn’t work. Radiation can also be a prt of treatment, but it is a lst ditch weapon because the way it works is to kill the affected bone. When tumors (plasmacytomas) appear or deterioration of bone masses becomes critical, radiation is employed and works because it takes its ball and bat home, stopping the game. But also, bone is a necessary part of the hematological system and you can only kill so much before the ramifications becomes problematic and detrimental in its own right.
There is cause for some sense of relief though. Medical research continues and as it does we continue to learn about the way that our physical systems are similar and different, and it continues to make forays into the darkness of the unknown through experimentation. This motion inevitably takes us closer to a final, once and for all solution to the cancer that plagues us. My personal favorite of future solutions are the ones involving viruses to carry cancer killing chemistry directly to and only to cancer cells. But the real breakthrough will occur when we discover exactly what triggers cancer in the body. Then, like polio or swine flu, we can inoculate ourselves against it, or perhaps even manipulate the genes to disallow even the notion of a cellular disruption like cancer. In other words, my hopes rest in what is now science fiction. But that’s in no way a slam; In my lifetime I have seen the growth of technologies which were the total domain of science fiction turn into turn into such reality we have no patience for malfunction. Science marches on, and as it does, the ideas of reality versus fantasy wane tragically. The future holds tremendous promise, but it isn’t here yet, contrary to the assertions of some writers. However, the future always was and always will be coming. It’s on the way. And as we have learned, people have a tendency to master the problems they encounter, and in my heart I blieve that some day the writers which so irresponsibly use words like ‘cure’ and ‘around the corner’ today, will be making those as understatements eventually.
In the end I guess I’m saying that for about a third of the people with Multiple Myeloma have what appears to be a fairly bright future with the present tools we have to combat it. The other two-thirds of us, well, not so much and will react in a range from worked a little to didn’t work at all. But on the whole, we have learned a few good things. Like learning that low dose can be just as effective as large dose chemo, that subcutaneous injection is better than intravenous infusion –at least appears to reduce side effects. We have learned to combine a few different therapy chemicals and in these ways have made things a bit better. And that’s just okay by me. But we need to be informed honestly about the situations we find ourselves in, if we are to make good choices about how we will face our individual challenges. Sometimes therapy is not the proper course, sometimes it is. We know that the treatments available have the same efficacy no matter when they’re begun.
For around a third of us, there’s great news. For the rest of us, we must put our faith in the future. But for all of us, the treatments we take will still make us uncomfortable but not so uncomfortable as those in the past. Our old chemical friends are the new new treatments by virtue of combination. More improvement. But lets not overstate anything to instill false hope. That does as much damage as trying to defeat all hope because in order for us to make informed decisions, our information has to be true.
I’m cheerful today, after visiting Mayo Clinic for the end of the 38th 28-day cycle of pomalidomide. IgG is up a paltry 3%, from 1170 to 1200 mg/dL, but M-spike is down a whopping 17%, from 1.2 to 1.0 g/dL. I don’t actually believe that my monoclonal proteins dropped that much, because last month’s figure was a medical impossibility (higher than IgG), but it feels good anyway. See, it doesn’t take a lot to make me happy. We celebrated with a couple of bowls of kettle-popped organic popcorn.
STABLE is the proper description:
The myeloma is stable. IgG has varied between 923 and 1350 mg/dL since July of 2008, two and a half years. I just want to stay on this regimen forever, running marathons and otherwise enjoying life. It doesn’t work that way, but so far pomalidomide has given me nearly three years of normalcy.
When pomalidomide fails, what’s next for me?
Every treatment fails eventually – that’s a dependable feature of myeloma. Apparently, though, I will have plenty of options. I’ve had thalidomide, pomalidomide, dexamethasone, and low-dose naltrexone so far, no other doctor-prescribed treatments. There are Velcade studies at Mayo right now, and Carfilzomib, plus several new agents which work in magically new ways. Dr KDS mentioned Phase I, II, and III trials – lots going on, and I might be eligible for several of them. I’m feeling good about the future.
We even discussed bone marrow transplant, but I’m not sold on that, for me. I have a slow-moving variety of myeloma, and I’m hopeful that it can be managed by using the existing treatments in a serial fashion and, perhaps, by taking advantage of new ones as they come along. The cure for myeloma is to live long enough to die of something else, and that’s my plan. Meantime, life is to be lived!
What About Secondary Cancers?
There is new evidence that long-term treatment with Revlimid, such as Revlimid maintenance after a transplant, may result in an increased risk of second primary cancers including lymphoma, leukemia, and solid tumors. The risk is still low, perhaps less than 5%, but studies seem to show that it is somewhat increased compared with people not on Revlimid maintenance. Doctors are trying to quantify this risk now, to determine whether it says anything for or against long-term maintenance. The Myeloma Beacon has a very current article on this issue.
So what about pomalidomide? Thalidomide, Revlimid (lenalidomide), and pomalidomide are all immunomodulatory drugs (IMiDs). They all “modulate” the immune system, suppressing it to some extent, in their multi-pronged campaign against monoclonal plasma cells.
THE FOLLOWING ARE THE SUPPOSINGS OF A NON-DOCTOR. READ AT YOUR OWN RISK: We know that an important role of the immune system is to kill cancers before they can get started. The DNA of a cell goes wacko (technical term) for whatever reason, say a coincidental zap from a gamma ray that left the star Alpha Centauri 4.2 years ago, or a treatment by an alkylating agent like melphalan, or a radiation treatment for something, or even a PET scan. The immune system detects the wacko cell and swats it down. Game over.
If the immune system is suppressed, however, maybe it wouldn’t detect the wacko cell, or maybe not until that naughty cell has multiplied and the group has become too strong and adaptable for any immune system to swat it down. Thus the drug doesn’t actually cause the cancer, it simply opens the door for it. Again, this is all supposition; I am not a doctor.
If something like that is happening, though, we might see secondary cancers in people taking other IMiDs like thalidomide, if we look, and eventually perhaps in those of us taking pomalidomide. Dr KDS says that there really is no information on that last point yet. Pomalidomide is too new. I don’t know if anyone has yet looked at the information that does exist. But I do know that I’ve been on pomalidomide for nearly three years now, and that easily qualifies as long-term treatment. There was no transplant, but this is maintenance nonetheless.
How Do We Fight Secondary Cancers?
Job One, of course, is to discuss this with our doctors, and keep ourselves up to date.
Job Two, in my opinion, is to live a healthful lifestyle that fights cancer. That is a huge subject covering nutrition, exercise, sleep, addictions, and much more. It is, however, more or less in our own control. We can influence our own futures and make it more likely that we’ll be here for our grandchildren. I’ve been thinking about writing a book about this (of course there are books out there already), and may blog about it, but here are some simple principles:
Nutrition: We simply avoid eating anything that does not contribute to health. Does soda contribute to health, or a jelly doughnut, or french fries? Of course not! So we choose a healthful alternative, like charged water, a slice of organic whole-grain bread with a little organic raspberry jam, or a banana. Further, we go for the very best foods, especially fruits and vegetables, organic where suggested by the “dirty dozen” lists. Good nutrition contributes in two ways: (1) we avoid ingesting foods that cause cancer, foods full of pesticides, bad fats, and empty sugars; and (2) we do eat high-quality foods containing nutrients that our bodies need to build a competent immune system, including antioxidants and other micronutrients. We are what we eat.
Exercise: Some is good, more is better. A good goal is a half hour, five days a week. We three try for an hour and usually make it. A balanced program, aimed at improving overall health, will include some resistance training (muscle building) and some aerobic exercise, with the prior advice of a doctor of course.
Sleep: How can our health be at its best if we shortchange ourselves on sleep? Studies show that most people need eight hours, some more and some a little less. One test: if I need to use an alarm clock to wake up, then perhaps I’m not getting enough.
Smoking: Oh, for God’s sake, if you still smoke, do whatever it takes to stop. No excuses – it’s killing you and everyone around you. Rehab if necessary. If you live with a smoker, move out.
Overweight: Overwhelming evidence points to overweight as a serious cancer risk. If you are obese (BMI 30+), or even overweight, please find a way back into your bathing suit, whatever it takes. This will require a serious lifestyle change – you will fail if you think it might not. Talk to people who have done it.
We three have followed these principles for years now. Does that mean we won’t get additional cancers? No, it means that our risk is lower than it would be otherwise. That’s all that any of us can do.
Some Current Test Results:
Canada – The CTV investigative journalism program W5 will have a feature on the high cost of cancer drugs in Canada. The show airs tonight, Saturday, March 27th (check your listings) and there will be mention of Revlimid and multiple myeloma. I will post a link to the video once if appears on their website. For now, you can access the W5 website by clicking here.
All 4 parts of Pills, Patients and Profits can be seen here. Two MM patients needing access to thalidomide and Revlimid are featured.
I’ve been taking thalidomide for the past 4 years, and putting up with the gradually increasing neuropathy. The sudden-onset muscle cramping, however, does get downright annoying, especially when one of my super exciting dreams is interrupted by a golf-ball sized muscle cramp hitting in the calf of one leg. An interesting question comes up: does the activity in my dreams (leaping from building to building a la Spiderman) cause the cramp, or does the onset of the cramp influence what I am dreaming? I should mention that I have always had really great dreams – now that I’m 71 years old, it’s the only real excitement that I get. LOL
I will put up with my fingers getting twisted into weird positions. That is merely annoying, especially if I am trying to hold a pen or a pencil. What really hurts though, and what I find the most distressful, is a cramp in the arch of one or both feet just before bedtime. Nothing seems to work – heat, vibration, massage, NSAIDs. For years, I have read about people using tonic water (quinine water) to treat muscle cramping, and I have always scoffed. “How can a miniscule amount of quinine possibly influence muscle cramping?” sayeth I. ” It must be in their imagination!” Well, one evening I was ready to try anything, and found a bottle of quinine water in my larder. Ice in the glass, and glug, glug. Within five minutes the cramping in the arch of my foot was GONE. I believe that my reaction was, “Son of a gun!” or something like that.
The next night, same thing: cramps start, drink a glass of tonic water, cramps stop and I get a good night’s sleep. Great dreams: no cramps in the middle of the night, either. Being skeptical, the third night, I went cold-turkey: no tonic water. At two in the morning, while climbing a hillside carrying my trusty 7mm Remington Magnum on a bear hunt, my leg knotted up with nasty cramp. Sudden-End to a really great dream.
Gentle readers, I am not one to leap to conclusions, but every night for the next 2 weeks I drank the tonic water (yes, I went to the grocery and stocked up on a generic brand, some with lime and some “straight”). No cramps. If I skipped the tonic water, I got cramps. Therefore, I must come to the conclusion that tonic (quinine) water has a miraculous ability to stop and/or prevent muscle cramping caused by long term dosage of thalidomide.
There is an additional benefit. Both my Family Physician and my VA physician advocate taking 1½ oz of spirits, or a glass of wine, before bedtime. (a little ethyl alcohol IS good for the human body). This is a marvelous excuse, then, to imbibe a vodka n’ tonic before climbing into my P-47D Thunderbolt, and zooming off to fight a bunch of Me-109’s at 25 thousand feet.
Best regards, Bob Oberle, Chantilly, VA aged 71, dx 5/02 IgG lamda stage 2A, SCT 3/03, in CR since, thalidomide q36hrs for maintenance.