Mohr’s Myeloma Musings: Reflections 2.0
In August I wrote a column titled "Reflections." In that column, I dealt with the question of what the worst part about having multiple myeloma was.
Personally and professionally, I am now going through a far more reflective stage in my life than I was then.
In six weeks, I will retire from my position as a school superintendent. After 37 and a half years in education, there are plenty of memories to reflect on. Because of the fact that multiple myeloma has such a huge impact on my life, reflecting on issues associated with living with multiple myeloma is something I have also done a lot of lately.
This state of reflection was initially caused when I read a recent issue of Time magazine. The cover story of that issue was titled "What if I just decide to do nothing? Breast cancer's new frontier."
The story describes how doctors are rethinking breast cancer treatment, particularly calling into question the "cookie cutter," one-size-fits-all approach to treating the disease. After reading the story, I couldn't help but reflect on the basic question of the story - What if I had just decided to do nothing when I was first diagnosed with multiple myeloma?
I don't think I need a medical professional's opinion to say that the lesions on my hip, spine, and femur would have become problematic and impacted me in a way that was avoided by starting treatment when I did. In addition, my myeloma markers would have skyrocketed and other more serious symptoms associated with the disease would have manifested themselves.
Perhaps the question of not doing anything is even more relevant now that I am on maintenance therapy. I have read of others who have chosen to forego maintenance therapy after achieving a level of remission, whether remission was achieved through induction therapy or an autologous stem cell transplant.
As I battle sudden, unexpected, volcanic bouts of diarrhea three days a week and bronchitis that seems to linger for months on end (all side effects from the Revlimid (lenalidomide) maintenance program I am on), doing nothing at this time sounds very attractive.
Reflective discussions and Monday morning quarterbacking on treatment are common for those of us afflicted with this disease, and there is no shortage of columns or articles (both personal and professional) espousing what should or should not be done.
There are many other questions or issues I have reflected on lately, one being the words or terms used to describe multiple myeloma.
I cringe when people use the word “terminal” to describe multiple myeloma. I associate the word terminal with imminent death. Newly developed treatments in recent years have lengthened the prognosis and, in many cases, have allowed multiple myeloma patients to live near-normal lives for years.
By the same token, I also question the use of the word “chronic” to describe multiple myeloma, a word that seems to be used more commonly now. The use of that word seems to minimize the seriousness of the disease.
I’m sure that one could say this is nothing more than a question of semantics, but I prefer “incurable but treatable,” a phrase that best describes the true nature of our disease.
I also have tried to understand anecdotal evidence that disputes the scientific facts about multiple myeloma.
Multiple myeloma is rare. According to the National Cancer Institute, myeloma represents 1.6 percent of all new cancer cases in the U.S. You have a 1 in 143 (0.7 percent) lifetime risk of getting the disease.
And yet, I know six people who have multiple myeloma. I am not talking about casual acquaintances. These are individuals I know well – parents of former players, a Canadian fishing trip partner, a neighbor who lives a block away, a very close work associate of my wife. I know more people who have multiple myeloma than who have any other type of cancer.
One of the things I continue to reflect on is the heterogeneous nature of multiple myeloma. Most diseases and their treatments may be similar, and my limited knowledge of physiology and the human body probably contributes to my inability to comprehend this. Using an autologous stem cell transplant to illustrate my point, I could very easily describe my stem cell transplant to be as close to a near-death experience as I would ever want to be. And yet there are others who have described their stem cell transplant experience, amazingly, as restful.
One of my New Year’s resolutions was to take better care of myself: to exercise, eat right, and rest when fatigued. My doctor and his staff have preached the importance of this approach since my initial diagnosis, especially emphasizing it since my stem cell transplant in June of 2014. In retirement, I will have no excuse for failing as miserably as I have in these important tasks of living with multiple myeloma.
I have always told my staff and my teams that self-reflection is a valuable tool in improving personally, professionally, and spiritually. We owe it to ourselves as people with multiple myeloma to use reflection to help us deal with the reality of living with this disease and to hopefully improve our condition while doing so.
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks for the interesting column, Steve. I think that you may know more people with this cancer than would be statistically possible since myeloma is much more common in us older people than in younger ones. I agree with the semantics of your terminology, too, and have also met more myeloma patients than one would think would be the norm, over the last few years. Best wishes for your retirement.
Thanks for your thoughtful and thought-provoking article Steve. I'm sorry to hear about the GI side effects you're having with Revlimid. I stopped my Revlimid maintenance several years ago because of the same issue several years before this article about Revlimid GI problems was published in the Beacon
http://www.myelomabeacon.com/news/2014/10/14/revlimid-diarrhea-bile-acid/
I imagine that you have seen the article before, but thought I would bring it up just in case.
Steve great article, I have chosen the term controllable, I have a daughter that is diabetic, and its controllable with proper medication same as myeloma.
I too have the GI issues more then I like but less then others with the same cancer, I love spicy food, but I have cut back on those types of food, yes still have some once in a while and I pay for it, goes back to quality of life, I would rather enjoy a favorite food, knowing what will occur in a few hours, then eating bland foods all the time, just need to be cautious and eat smaller portions.
Great article Steve. Thought provoking for sure. I struggle with how to describe my disease to people. I'm not sure that folks who have no knowledge of myeloma understand the challenges and fear.
Nancy - I am sure that knowing so many people who are close acquaintances of mine who have multiple myeloma is a statistical anomaly. I appreciate your extension of best wishes on that next phase of my life.
Holt - Did you go on another treatment regimen when you went off Revlimid? Thanks for sending me that article. I read just about everything in The Beacon on a regular basis, but somehow missed that.
Jack - I like the term controllable and hopefully it becomes more controlled by these new drugs that are being approved. Since my transplant, I seem to suffer more from heartburn and like you have dealt with it by limiting the portions of those foods that cause problems.
Matt - I agree that the average person understands little of what we go through of living with an incurable disease. It goes to two opposite extremes. They either have you near death (my wife and kids are constantly hearing rumors of me being in a terminal state), or they minimize the situation by their anecdotal evidence or suggestions of non-traditional cures.
Aloha Steve,
Excellent article. The Revlimid is kicking my butt also. I am usually fine for the first two weeks of the cycle, but I often have GI problems during the last week on and the one week off.
I think your discussion opens an even bigger discussion about what point in our lives do we stop treating these diseases. My father has decided not to fight his lymphoma and instead focus on enjoying the time he has. Not only is he enjoying not having the effects of chemotherapy, but he has been able to stop going to any doctor for any reason other than for palliative (pain) therapy.
Checking out of the whole health care system has given him a huge slice of his life back. That is VERY valuable to him.
I would love to see more of us recognize that there is an appropriate time to say enough is enough. Good luck with your retirement and your continuing treatment.
Aloha
Tom
Hi Steve,
First of all, congratulations on your retirement! I hope it is a long and happy one! I was diagnosed last year at age 59, and immediately considered retirement. However, in my line of work, I can do quite a bit on the internet and also work from home. So, I am going to continue on for a while part time. I realize I am very fortunate in that regard.
I wanted to address your GI problems with Revlimid. It would seem to me that it is really affecting your quality of life. Have you considered Velcade for maintenance? I also had some problems with Revlimid, and was actually on that plus Velcade and dex for awhile (reduced frequency for maintenance, 5 mg Revlimid), but it was still too much for me. So, I am now just taking a Velcade injection every other week, with 12 mg of dex IV at the same time. Of course, that means 2 doctor appointments every month, but I was doing that anyway since I was on the full triplet for maintenance.
Maybe you could discuss Velcade as maintenance with your doc? I think the docs tend to think that Revlimid is "better" because it is oral, and as a result, easier for patients to take. However, I think the side effect profile is much more pronounced, plus the secondary malignancies are an issue with Revlimid, as well. I could not find any studies comparing Revlimid and Velcade maintenance in terms of effectiveness, that is the only downside. But it is definitely easier on the GI tract.
Just my two cents! Good luck! And, keep writing these great columns!
Regards,
Ellen
Thomas - You raise a great question about what point in our lives do we quit treating our disease? I would like to think I am a significant amount of time away from having to make that decision. Having said that, I hope that when that time comes, I will have the knowledge and courage to make the right decision. My mom did prior to her passing, and she and the entire family were at peace with her decision.
Ellen - Thank you for sharing your experiences with Revlimid. It is definitely affecting my quality of life and because of that it is something I will discuss with my doctor at my next check up in early December. I appreciate your kind comments!
Steve, I think that I mentioned this to you before, but I have successfully dealt with the Revlimid diarrhea issues by taking colestipol (Colestid). Started with two three times a day, then two twice a day, and then two once a day. For me, works like a charm.
Steve,
Congrats on your upcoming retirement. When I returned to work after having an auto SCT, I had a difficult time concentrating – I worked for a chief of police as an admin assistant. Therefore, I decided to retire and now realize I made the right decision for me. I am able to focus more time on walking, exercising, eating healthy, etc. Plus, I need more sleep, as the Velcade maintenance I'm on usually increases my level of fatigue.
As far as your GI issues, I agree with other Beacon folks that looking at an alternative to Revlimid may be worth a discussion with your doctor. If it's affecting your quality of life, there should be a better myeloma drug for you.
Again, enjoy retirement. You have certainly earned it after dedicating so many years to education.
I love your description of a stem cell transplant "as close to a near-death experience as I would ever want to be." AMEN! I've now lived through three. One was a lot easier to take than the others, but it was still awful! And I don't care who you are, there were four of five days that were really tough. Maybe someone who describes it as a "restful" experience was so drugged up they didn't know the difference!
Andrew - It seems as if whenever I take something to combat the diarrhea, I suffer from the opposite extreme, which, without going into the messy details, eventually is a worse situation than the diarrhea.
Cheryl - I am glad to hear that retirement was the right decision for you and gives me some comfort in that I made the right decision. It seems as if we came to the decision to retire around similar reasons.
Pat - 3 transplants?!?! I can't even imagine doing another one, much less two more. You are truly a pioneer in doing so and we who read The Beacon are fortunate that you have shared those experiences with us. I hope things are going well for you now as you recover from number three.
Steve
GI issues can be controlled with probiotics. Works for me. I have been on 25 mg of Revlimid for almost 3 years, and the probiotics works. This was recommended by an MD turned naturopath way back at the start of any chemo.
Thank you Steve for your thoughts, very similar as the ones that are dwelling in my head. In September 2012 I started with 4 cycles of induction therapy (dexamethasone 40 mg once a week, Velcade once a week, and Revlimid 20 mg daily, followed by an auto stem cell transplant, followed by again 3 cycles of the same induction therapy and finishing with 3 years maintenance with Revlimid only). I am now in my last year of the maintenance therapy by using 5 mg of Revlimid 3 weeks and 1 week of. I couldn't handle 20, 15 or 10 mg Revlimid in my maintenance regime. The last year I am in complete remission (monoclonals present but not countable).
I just discussed today with my multiple myeloma specialist my options after I finish my trial in another year. I could enter a special trial by staying on the same regimen as long as my remission lasts, it is especially for people who already are in this trial I am in now. He said that I was the only person who could make a decision regarding side effects versus quality of life. On the other hand, he was very certain that staying on maintenance would give me the longest remission possible.
I am 58 years, the transplant caused a lot of complications and collateral damage. So I really prefer a low dose of Revlimid than a chance of needing another transplant. My oncologist reassured me that 5 mg in my case is enough to keep the multiple myeloma in control for now. Eventually the multiple myeloma will take over again, but he said:"Your biggest gain in fighting this disease is to make sure your first remission lasts as long as possible, because after that it will be harder and harder".
Wish you all the best Steve in making your decisions. Glad you are retired and are able to live life in another meaningful perspective.
Hi Steve, from another Steve.
Congratulations on your retirement. I wanted to add that the probiotics also worked for me. Since I started taking probiotics 4 months ago, my GI tract is back to normal (before multiple myeloma). It's amazing how GI tract problems diminish the quality of life.
As another perspective on transplants (tandem), I would do it again in a heartbeat. Not that it was a "relaxing" experience, but for me the major problem was acute fatigue. So I consider myself lucky compared to other's who had a much worse time.
I think that the phrase that best describes multiple myeloma is rapidly changing. When I was diagnosed in 2008, my family doctor told me I had 2-3 years, so "not curable but somewhat possible to delay the inevitable" was an accurate description. Since then, and with all the new drugs now available, the description is more like "while not curable, it's certainly possible to significantly extend the inevitable, and with a decent quality of life to boot". And I believe that in the near future the phrase "not curable ..." will become "curable in many cases with little impact on quality of life". I sure hope so, and I hope you have a great Thanksgiving.
Steve
Eric - Based on the number of people testifying to the effectiveness of probiotics in regards to GI problems, I will definitely discuss this with my oncologist at my check up in 2 weeks. Have a blessed Thanksgiving!
Christel - We are on the exact same maintenance program - 5 mg of Revlimid a day. I couldn't handle 10 mg a day. The diarrhea was worse than it currently is, and a rash broke out all over my body. I believe we have received similar advice in regards to the importance of extending remission for as long as possible. I hope you have a blessed Thanksgiving!
Steve - I'm glad to hear that your transplant was tolerable and could easily decide to have another one. My oncologist and family would have to do some serious persuading to get me to consider it again. I hope that neither one of us has to make that decision again. I think you hit the nail on the head in describing the current and future status of myeloma. Have a blessed Thanksgiving!
Hi Steve, thank you for your article. My husband, Franz, was diagnosed with multiple myeloma 2 years ago. He started a Revlimid, dex treatment plan in January of 2014. By June, he was having so much trouble tolerating the side effects, the lethargy, tiredness, neuropathy, constipation, etc, that he finally said, 'this is it, I'm not doing the treatment anymore!" He said it felt like a bomb was going off in his body, and it just wasn't worth it. He never achieved complete remission, but his numbers had definitely improved. He has also stopped getting his blood work done, because he's made the decision not to go back on treatment. To look at him, you would never know he had been so sick. We have taken 2 vacations to Mexico, a 3-week trip to Europe, and a couple of trips to Arizona. We're enjoying life and living it as normally as possible. I'm not sure, if he started to get as sick as he originally was, if he wouldn't go back on some kind of treatment, but so far he hasn't broken any more bones, and he feels pretty darned good. Best wishes to you in your upcoming retirement, and with whatever treatment decisions you make for yourself in the future!
Hi Steve,
Congratulations on your upcoming retirement! Sorry to hear you are having troubles with your Revlimid therapy. I have been so blessed since my autologous stem cell transplant in May 2014. I'm truly feeling great. I enjoy my family and friends. I've been able to stay active. I got to golf and now I am in a bowling league. I'm in remission but with not being able to take Revlimid because of low white blood counts, I do wonder how long it will last.
My doctor didn't recommend any other maintenance therapy and really recommended quality of life. I had no problems taking Revlimid with my induction therapy and then to start it and have problems even when dropped to lower doses. My doctor said there is no proof lowering it to 5 mg does any good. I find it interesting reading other doctors put their patients on that dose and also different therapies.
I like your terminology – incurable but treatable. I also find it strange in our small area there are a few of us with multiple myeloma. I just had a person that I know pass away a few months ago of this.
Enjoy your retirement!!
Steve
At the start of each 21 day cycle, after the third day, I start to get itchy. So I skip the next dose or two, ok with the oncologist. Then I pickup the Revlimid as normal and all is ok for the rest of the 21 day cycle. I take 25 mg per dose.
I also sauna every day for 40 minutes, drink lots of water, and this relieves many issues I feel.
Take care
Mary - I am glad to hear that your husband's decision to forego treatment has worked out for him and I hope that it continues to do so. Your husband's situation is just more proof of how heterogeneous our disease is.
Sherry - It is great that you are doing so well. It was just yesterday that I wondered to my wife how you were doing. It certainly is strange that so many within our area have been stricken with this disease. I was also told that there is no proof that a 5 mg dose of Revlimid has any effect, but if I am not mistaken, I believe we are being treated by the same doctor. I hope your good fortune in dealing with multiple meyloma continues.
Eric - I have dealt with rash/itchiness on and off since my ASCT in June of 2014. Right now it is more an itchiness over my entire body than isolated rashes. While I don't have convenient access to a sauna, I hardly drink water, which my wife is all over me about. I will try your advice - anything to get rid of this annoying itchiness!
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