Letters From Cancerland: Toxic Dump
Remember Love Canal?
If you came of age in the 1970s or earlier in the United States, you surely remember Love Canal.
Love Canal was a neighborhood in Niagara Falls, New York, built atop a chemical waste dump that had been closed and covered with dirt in the early 1950s. An elementary school was built first, followed soon by the houses.
Even though residents soon started noticing odd smells and oily substances leaching up into the playground, it wasn’t until 1976 that the dump, after unusually heavy rains and winter weather, gave up its contents and everyone realized there was a crisis.
As the waste barrels continued to oxidize, disintegrate, or break underground, the chemicals rose to the surface and made their presence known. Love Canal was a cancer cluster, a birth defect cluster, and is still considered one of the worst environmental disasters in America.
So what’s Love (Canal) got to do with it (myeloma)?
I saw my oncologist in early April after finishing my second full course of Revlimid (lenalidomide). Responding to my laundry list of side effects, my oncologist had tweaked my initial course of treatment by lowering the dose to 15 mg from 25 mg and giving me two weeks off instead of the standard one between courses. This was my follow-up visit after the tweaks.
The result on the myeloma front? An IgG (immunoglobulin G) of 1,600, the first time it has fallen within “normal” parameters in a long, long time. In short, wow!
So why am I thinking of Love Canal?
The way I will continue to keep the myeloma in check is to swallow a toxic capsule daily for 21 days in repeated cycles. I have become my own chemical waste dump.
There is no question that Revlimid is a powerful drug, both for better and for worse. It has extended the lives of countless myeloma patients. For many, and I may be among that throng, it has been a wonder drug.
And yet it is a toxic drug. Even with the lower dosage, I watch the side effects building as the toxicity increases in my body. When a friend, rejoicing in the good oncology news, asked me how long I “have to” take Revlimid, I replied, “Until it stops working or kills me, whichever comes first.” (Is it just me, or is there something seriously askew in that reply, and even more askew in my thinking and saying that?)
Not unlike someone living near a chemical dump, I worry about the cumulative impact of Revlimid over a long period of time. My list of medical issues, some related to Revlimid, some perhaps not, continues to grow. Fellow Myeloma Beacon columnist Arnie Goodman wrote in his March 2012 column: "Multiple myeloma takes its toll. A physician once told me that between the disease itself and the treatments, it wears you down. I am certainly not what I was six years ago."
Me neither, now almost nine and a half years into my life with myeloma. Add Revlimid, and I doubt I will be the same in six months, let alone six years, as what I am now.
Several columnists have recently written about the uneasy alliance between treatment and quality of life, and treatment and life itself. I think I have a sense of when I would stop treatment, but I am also acutely aware that I have yet to have to make that decision.
That day will come. And in the meantime, I will go on with Revlimid, creating my own internal Love Canal.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
April,
I agree with you regarding Revlimid. It did not work for me at 25, 15, or 10mg. Side effects though worked for me ... bad taste to food, neuropathy, aches in muscles, decrease in energy and stamina, constipation and depression There were more as well as low neutrophil counts and infections from that.
I am glad it works for many but I feel, like you, that it certainly changed my quality of life and exercise patterns.
April
Thanks for the update on your Revlimid treatment. Do you also take dexamethasone? How much?
I am in my eighth month of Revlimid treatment. During the first 3-4 months, I developed a cold-like condition every month. However, in month 5-8, no more cold-like issue, and my blood tests are great. I take 25 mg for 21 days followed by a week off. I take 12 mg of dex once every week even on days off. Dropping the dex dose from 20 mg weekly to 12 mg weekly made a great improvement in symptom reduction, and immune system stability.
Each time I start a new cycle, after 3-4 days I get itchy on my head, groin and shins. I skip a day of Revlimid, the itch goes away, and I am good to go for the rest of the cycle.
I have added a natural anti inflammatory quercetin, iron, B12, B6, lipoic acid, magnesium citrate (relieves constipation so I take it daily, and it also helps prevent hypercalcemia). Drink lots of water to prevent the Love Canal buildup!
I have found that a short nap in the afternoon relieves the tiredness and the lower dex dose does away with the sleepless nights caused by the steroid. I hope this helps all your readers and of course yourself with symptoms you may experience.
I am on my third round (15 mg). Yes, I take 20 mg of dexamethasone at the start of week 1, 2, and 3. I get the itchiness about day 2 of each round; I take a store brand version of Claritin and it goes away.
I think the nature of oncology is such that we (patients) will always be poisoning ourselves during treatment. It’s the nature of the beast. I think I can tolerate 15 mg Revlimid; we’ll see.
I've been on VRD for a year and a half. What a wonderful, awful treatment it is.
It has gotten me to the VGPR place I have been in a little over a year. Yeah! The bad is my legs hurt constantly below my knees. I have both constipation and diarrhea. And my scalp itches for a few days after I start back up from any break.
So far, for me, at least the good outweighs the bad.
April,
I went on Revlimid right after my stem cell transplant, and have been on it at one strength or the other for 2 plus years. Prior to transplant, I could take the 25 mg dose. After transplant, I went to 10 mg and to 5mg. I had so many side effects -- rash in mouth, around my scalp, one bad rash under my breasts and behind my ears that was so bad I had to get steroid shots to clear it up. Then this fall I had pneumonia (double) twice and severe anemia. The doctor took me off of Revlimid in March. He though it might be toxic for me. I did not know any one else went through this! I am the only one I know who has multiple myeloma in this area, and there is no close support group. I get all my info from the Beacon! And I do appreciate all the writers!
Hi April, I think I've written this before, but I'll say it again. I always look forward to your columns here. I have to say, though, that I'm a little conflicted about this one.
I realize the column is an honest description of how you feel right now as you're being treated with Revlimid. Yet I worry that it might put too much emphasis on the downsides to Revlimid without making sure readers understand and fully digest what may be the biggest news in the column, which is that Revlimid seems to be working for you.
I guess I'm worried that people will read your column and say "I don't care what my doctor says, I'm never going to take Revlimid given how toxic it is".
Is that the message you want people to get out of your column?
After my 30-month drug vacation following stem cell transplantation, my m-spike reappeared and I began taking 10 mg Revlimid (with 10 mg dex) 21 days on 7 off. By the 3rd cycle I was feeling so much nausea, fatigue, and being sick in bed all the time that I told my doctor I couldn't continue. We reduced the dose until I was only taking 5 mg, 14 days on, 14 days off. Still, I felt too awful that I wondered how I would make it through each day. I started preliminary research on how to commit suicide.
I had expected Revlimid would keep me stable for years and when it stopped working I would seamlessly switch to pomalidomide [Pomalyst, Imnovid]. But, after essentially the same experience with pomalidomide, I really felt doomed. My "nightmare" with low doses of imids lasted 16 months - there were several 30-day periods when I went "off drugs". Those were by far the worst experience of my 7 years with multiple myeloma. That was almost three years ago.
Since then I have been on Cytoxan/bortezomib/dexamethasone [VCD, CyBord] - with several dosing adjustments . While I seem to experience more side effects from Velcade and Cytoxan than lots of people do, it is at least a drug combination that I can live with. I have roughly 8 or 9 days per 28 day cycle that I feel pretty lousy (nausea and fatigue mostly). That leaves me with 19 days that I feel pretty good - at least can enjoy eating. I hardly ever get sick (knock on wood). I have the energy to walk 3.5 miles every day. I take great vacation trips with my family.
Like everyone, I am anxious about what will come next. But, having tolerated Velcade, I am optimistic that the same will be true for carlfizomib [Kyprolis]. With the other drugs in the pipeline I can imagine an optimistic future - even without the imids. I thank God for Velcade and the nearly 3 years it has given me to be alive for the upcoming new drugs. Thank you, April, for your column.
JimNY: Good point. I think the message I want to give is "every treatment is a choice, and every treatment has consequences." I am getting good oncology results from Revlimid. I also am swallowing a toxic substance 21 days out of 35. Do my good results make the choice more palatable? Sure they do. If I continued to show strong side effects (I'm now showing moderate to mild side effects), I would probably answer that question differently and have to question whether Revlimid was worth it for me (and I am always only speaking about me--not recommending or suggesting anyone else has the same experience).
And while I was making the comment to JimNY, Joe jumped in with his observations about faring poorly with Revlimid and doing well with Velcade. I lasted about 5 months with Velcade because I could not tolerate the side effects! What continues to amaze me about myeloma is that we are all truly individualistic when it comes to treatment, effects of treatment, and responses to treatment!
Thanks for your reply, April. I agree that people need to understand that there are upsides and downsides to just about any myeloma treatment. You also make a valid point, which I've also come to appreciate, about how people respond in very individual ways to the various myeloma treatments.
I think part of what is bothering me is your repeated use of the word "toxic" in the article and here in the comments. I could argue that it's not even an appropriate word to use in this context, but I don't want to get into a debate about semantics. Suffice to say that "toxic" is an emotionally charged word which, by it's very nature, will cause many people to walk away from your article with less than a balanced perspective. From what you've written in the past, it's not clear to me that you usually have that purpose in mind when you write.
Wow, April. A great article and what a metaphor! My husband was diagnosed in 2011. He has not, as of yet, chosen to have a stem cell transplant. That's not to say his oncologist isn't suggesting it! His main reason is that he will still be on a toxic chemical - Revlimid. Guess he's waiting for the "silver bullet."
JimNY,
I guess I don't really understand your objection with the word 'toxic'. I think we all understand (or should, anyway) that we are literally poisoning ourselves to kill the bad within us (while also killing some of the good inside us, and hence the side effects).
Seems like common knowledge to me.
Louis
The question of Revlimid and its side effects (price being just one) is indeed toxic.
So toxic, that I have to take a recorded telephone survey every month just to get 28 tablets at 10 mg ... sheesh.
A wonderful drug, but if you have ever paid for it (13k) ... and also get the monthly lecture "Do not go near a woman with a functional reproductive system without wearing a full body condom, and that goes ditto for donating blood, semen, or other bodily fluids (much less sex), etc."
Gee, and what was my first clue that it is a toxic drug ?? I am a walking birth defect factory. Sheesh!
I take it 28 days per month and no steroids, and grit my teeth to get thru the side-effects and sleep a lot. Still, I'm alive. Mostly functional.
It's still much better than Total Therapy III or whatever they call it. I wouldn't last a month under that regimen. A little too toxic?
Frozen veggies in the microwave, topped with sunflower seeds, ranch dressing, a little cheese, and what have you -- really helps the constipation. (And add rice for the runs ...)
And it just happens to be good for you!
Congrats on the response, Ms. April! May you healthily cuss Revlimid for many years!
Dear Love,
Great article and terrific posts too from your readers. Learned a lot. I, like you, am ten years out from diagnosis and have been through lot of therapies, including 2 stem cell transplants and all that goes with that -- thalidomide, Revlimid, Cytoxan, dex, and now carfilzomib [Kyprolis] and Pomalyst. Many of the posts here had very useful ideas about how to self manage meds, ones I'd never thought of, so I'm grateful for those.
Of course, I'm concerned about the accumulated toxicity of all these meds and wonder what I'll do when my current regimen is no longer effective. That's given me some very dark thoughts but, at the same, it's held a mirror up for me and I started really talking honestly to my children and very closest friends. I wanted them to know that, from all the treatment I've already had, there might not be another medical miracle waiting for me and that, as a result of so much treatment, my other organs are getting 'brittle' and might not survive a new treatment even if there was one.
I've been able to dodge the pneumonia bullet a bunch of times but one day it's going to get me. Pomalyst is impacting my heart function and ability to discharge water from my system. Pulmonary function is reduced and on and on. But, like just about every Myelomic I've met, and just about every column I've read in the MB, we soldier on and that we must.
Love,
Michael
I had my stem cell transplant in September of 2013. My oncologist wants to start me on Revlimid (10mg), basically saying the good outweighs the bad, and given pipeline treatments additional progress is hopefully on the way. My blood counts look good so far (month 7), but my BIG question is has anyone experienced severe itching and skin rashes post transplant but pre-Revlimid? My oncologist is delaying Revlimid for now because of the skin thing. The rash is most acute after sweating, i.e., during physical therapy. If so, what protocol was prescribed and did you start Revlimid? Really concerned about my reaction to Revlimid, especially with this existing condition.
My daughter who is 35 was diagnosed at 33. She had Velcade, which gave her an irregular heartbeat and severe neuropathy, before having a stem cell transplant. She has been on 5mg of Revlimid with no real side effects. Although she is still in complete remission, they want to up the amount. I am very leery of her being on Revlimid because of its toxicity, but she wants to do everything she can to prolong the myeloma's return.
Hi April, thanks for your interesting column, and the comments have been interesting too!
When you say that you would have to be on Revlimid until it stops working or just indefinitely, does that take into account what would happen if you went into a complete remission taking it? Just wondering, since it would be nice to think that if it worked really well, you could have a drug 'vacation' too!
I took a low dose of Revlimid for a year as consolidation after my ASCT, and it was OK since I could see a light at the end of that tunnel! It wasn't great to be on it, but I was so scared of the myeloma coming back that I didn't mind putting up with the discomforts.
Just to help "newbies" not get too discouraged... my husband has been taking Revlimid for the last year post auto transplant. The only (underlined if I could) side effect he has had is minor fatigue.
Hi. After undergoing tandem autologous stem cell transplants (ASCTs), I was not qualified to undergo the usage of Revlimid maintenance. The risks are greater and unknown. At the age of 44 with 4:14 abnormality, little worried about what will transpire with my illness. All I can do is stay mentally and physically healthy by enjoying life and living to the fullest.
Nancy Shamanna posed an interesting question. Would I take Revlimid if I went into complete remission? I honestly have never considered the possibility of complete remission, as the only time I arguably was in it was for about 80-90 days after my second stem cell transplant. (Then myeloma activity showed back up.)
My body seems to work on the principle that even when my labs show relatively little myeloma activity, I nonetheless may exhibit fairly dramatic physical symptoms, including pronounced catabolic wasting, that indicates something is going on somewhere. The question for me and my oncologist is "at what point do we intervene?" because based upon the lab results, the answer is "not yet," while based on my physical condition, the answer is "NOW!"
Would I consider a Revlimid vacation if I were feeling fairly good and my labs had been stable? Maybe, probably.
I see a lot of responses from all angles on the Revlimid issue. I am not pro or anti Revlimid to any greater degree than any other drug in the myeloma pharmacopeia. For some of you, it will work wonders. For some of you, it won't. Some of you who take it will sail through without a hitch. Some of you (me!) will not. It always comes down to "what am I willing to do and what am I willing to try?" I'm willing to try, but I will always being cognizant that I am my own personal chemical dump!
It has always struck me as extremely odd ( and completely disingenuous)...when "WE" try to present ourselves as "completely normal",....despite due to the ravages of cancer, we regularly take Toxic chemicals, we undergo health destroying treatments ( hopefully temporary--but not always) , and endure numerous long-term side-effects...including legitimate fatigue, illness, dysfunctional organs, anemia, low hemoglobin, "chemo-brain", depression,etc... and a shortened life expectancy.
I suspect it all boils down to:
It would be a different situation were we to (visually) be missing a limb, or two.
Alas, dysfunctional Blood cells are damn hard to see, without a microscope and a needle/syringe...and you have to know what to look for.
Not many kids play "Pick the Dyscrasia(s) out of the slide". They'd rather pick dandelions, or such.
We tend to expurgate this way, every time someone like Arnie or April writes a sensitive column, based upon the simple " How Are you--I'm a Toxic dump ?" ( ie. How do explain the inner damage of MM, to one who has no clue ?)
BTW--Nice columns, Arnie and April. Good Comments.
Most of us do / will likely qualify for SSDI--just because we have active MM and are under active treatment. Especially, if we have lots of side effects from the ongoing treatments. Revlimid is but one such treatment and a corresponding side effect group /profile.
Keeping that as a deep, dark secret does no favor to anyone--especially "Newbies". Denial does no good, either. It is, what it is.
Thus, I choose not to reside in "Alice in Wonderland" and pretend. Even though this cancer is relatively "Invisible", does not mean I do not suffer from it's effects. Nor, you folks, either.
The disease is cruel. The treatments can be horrible,...and toxic. No sugar coating for me, Please. Thank you.
I may Look "Good" to the lay public--but there are many days when I absolutely feel like S**t!.
Perhaps some type of "group guilt" arising from a notion that this cancer is not as "disfiguring" as others---is at the bottom of an expressed Patrician fear of ...scaring off "newbies"? Or really telling the lay public ..." How I am".
I dunno...maybe that has crossed over into the subject matter of another column ? Maybe it's all the endless Boston Marathon coverage this week, with video of limbless victims, as the result of an insane act.
Just Be as well as you can.( ...and take your Revlimid /Krypolis/Velcade, etc--because it's keeping you alive!)
Happy Easter.
The greatest line in a comment ever: "Not many kids play 'Pick the Dyscrasia(s) out of the slide'. They'd rather pick dandelions, or such."
Thank you, R, for not only that winner but also your thoughtful and pointed response. I found myself nodding my head over and over.
You're right -- there may be a column in there.
Hi April --
What a great piece. And so true. Thanks.
18 months out from transplant my daughter is seeing a lot of what R is talking about. She looks really good, works every day and appears to be "normal". No one thinks about the Revlimid side effects, the fatigue, stomach issues, bloodwork etc. People say things like "So glad you are cured". They don't realize myeloma is incurable.
Being young, her friends question why she is not drinking when they go to happy hour (Revlimid). She has to drink so much water to help dilute the toxicity in her system she always is aware of the bathroom.
She is not a complainer, so nobody knows. She has learned to pace herself so the fatigue doesn't become overwhelming, but she does miss out on somethings.
Great column April and interesting comments everyone. I agree with this comment Colleen made with regard to the potential long term risks associated with Revlimid:
"After undergoing tandem autologous stem cell transplants (ASCTs), I was not qualified to undergo the usage of Revlimid maintenance. The risks are greater and unknown."
There are long term survivors of high dose chemotherapy (auto and allo) that peer reviewed studies show do very well with respect to quality of life over the long term. There are not long term survivors (15 years plus) of patients on never ending cycles of Revlimid so we really do not know what the risks are or what a patients QOL will be after being on Revlimid for years.
Very good column and its always important to note the potential pluses and minuses of any given therapeutic approach. It's also important that everyone realize that these things affect us all differently.
I went through four courses of Revlimid and dexamethasone last year prior to my stem cell transplant. I've been on a 10 mg maintenance dose of Revlimid for the last ten months or so. I've never had any side effect or problems from it (although the dex about drove me nuts). No digestive upsets, no fatigue, no colds or infections.
This is not to say that it's a harmless substance, or that some aspect of it won't catch up with me one of these days. Who knows? Maybe the thromboembolism thing will happen tomorrow.
My point, though, is that we all need to evaluate how these things work for us as individuals. What works great for you without any side effects may cause me a world of hurt.
Hi April,
Of course we need to know what's going on inside, however I see the "toxic dump" label as pessimistic, if not morbid.
After all, there are all sorts of "good soldiers" in there, waging a courageous battle for our lives. And they need our encouragement.
These days, it's been well established that positive thoughts are an important factor in healing.
"Toxic dump" indeed! How about "reservoir of good health"?
- Tom
Tom: I like the sentiment, but I must admit I laughed out loud at the label. Of the many things I am, a "reservoir of good health" is not one of them!
Good! Laughter is good for us, too.
My three-year experience with MM is quite a barn-burner.
And I credit my positive attitude with helping me sail through it all.
Right now, my wonderful reservoir is handling waves of radiation and Revlimid and Medrol and Prolia and Zometa, elegantly. While my spine mends from an ambush by a cluster of plasmacytomas.
And I'm feeling very healthy.