Northern Lights: Myeloma - A Chapter Of My Life ... Or More?
Sometimes I wish I could just forget about myeloma and put it in the past as a difficult chapter in my life.
I was pretty close to forgetting about it during the three and a half years when I was in remission and did not need any treatment.
That period ended a year ago when I relapsed and started treatment again with a daily dose of 25 mg of Revlimid (lenalidomide) and a weekly dose of 20 mg of dexamethasone (Decadron).
Even though I think that I am on about the easiest type of treatment (because it is administered orally) and I am responding well to the treatment (my monoclonal protein level has fallen to an MGUS level and all of my other blood counts are normal), it is no longer really possible for me to ignore my myeloma. I meet with my doctor monthly, and I have to deal with the side effects of treatment.
However, despite starting treatment again and having had to make adjustments due to side effects, I am still functioning pretty well with an interesting life – especially compared to what some other patients are going through with myeloma.
I still work part time, volunteer part time, and have other interesting things to do, such as walking, singing, reading, and doing stitchery projects. These are the fun things in life which keep my spirits high.
Becoming a grandmother of twin baby boys earlier this year has really put me over the top of happiness and has opened a whole new chapter in my family’s life. Both our daughters and their husbands live nearby, and my husband and I have been able to spend quite a bit of time with the twins, which has been a blessing in our lives.
I have been a volunteer at something or other over the last quarter century, and myeloma-related volunteering is now a priority for me. I think that this will always be the case going forward because it keeps me focused on learning a lot about the disease and its treatments. I have met some terrific people through my support group over the last five years, and we work on interesting projects together, such as patient seminars, annual walk/runs, as well as monthly support group meetings.
I volunteer in my other groups too, but to a lesser extent. One interesting commitment I made was to edit my choir’s newsletter. This stems from my new confidence that I found in writing a column for the Myeloma Beacon. I am also still involved with a parks preservation group, since I love nature.
I am glad that I took up activities such as singing in a choir and joining a needlework guild 15 years ago, when I became empty nested. The friends I have made in those groups have helped me through my myeloma problems all along.
In addition, I am well enough to travel. Recently my two sisters and I met in Vancouver, which we can’t do very often due to our busy schedules. I have been on other trips and out to seminars in the last year, but I just find that my energy levels are lower than before.
Compared to not being on treatments, I need more rest and have to work around the side effects of the drugs. For example, the dexamethasone can make me overly talkative and easily distracted. I therefore take my weekly dex dose at night, along with a sleeping pill for that night and the following one. Revlimid affects my digestive system, so I need to take a laxative on a daily basis. I also get cramps in my hands and feet sometimes from the drugs.
I nevertheless try to work some exercise into my day, especially walking, since I think it contributes to my overall health and helps to diminish the side effects.
So overall, my life with relapse is not as bad as I thought it would be.
I don’t have a crystal ball, and can’t predict my future, so I don’t know whether I may need other treatments than what I’m taking now. We do what we need to do to survive this disease. Fortunately, there are more and better treatments available now than there were even a decade ago.
And perhaps it is time for me to recognize that myeloma will be part of every chapter of the rest of my life.
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The quotation for this month is from J.R.R. Tolkien (1892 - 1973), an English writer, poet, and university professor, who said: "They say it is the first step that costs the effort. I do not find it so. I am sure I could write unlimited first chapters. I have indeed written many."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thank you Nancy.
I will admit that my life has had similar journeys and I also feel as if this invisible disease has no control of me. Some of my days pass by and I forget that I'm sick.
My regular monthly blood tests are the only reminder that I have multiple myeloma – that is, till my August testing reminded me that it's still in me. Since my 30-something chemo injections and bone marrow transplant in 2014, the myeloma had dropped and stabilised at a safe 5 points, but in August 2015 it had jumped to 12.9, requiring testing.
So, like yourself, multiple myeloma is once again a big part of my life.
I've learnt from all this to enjoy the life I had and the days to come.
Kim Martel
Nancy
I am on the same regimen as you, Revlimid and dex. I find that taking a magnesium supplement deals nicely with the digestive tract so no laxative is necessary. Also potassium supplements keep the muscle cramps away. I work with a naturopath, who is also an MD, to deal with the side effects of chemo using vitamins, minerals, herbs and lately, some East Indian herbs and products, to boost the immune system. This seems beneficial as most of my friends have had colds and sniffles, but not me.
Personally I feel the complementary treat approach is the best at keeping the body's systems functioning normally. So far so good.
Thanks for your comments!
Kim, I like your description of multiple myeloma being an 'invisible disease'. I am grateful that it is invisible now for me, since it was not at first, with having back fractures. Good to know you are managing, and hopefully are in a period of falling or low 'M' protein now? Like you, I enjoy my life as it goes along!
Eric, thanks for the info. Usually my immune system seems quite strong, but when I get into crowded situations or on airplanes, I often catch colds. I took the flu shot though. This year it is covering three viruses, including H1N1.
Thank you for your story and for the comments. My mom has relapsed and is starting Revlimid today with the dex and Velcade. She is very worried about the side effects, especially since she has high blood pressure. I feel better reading your story, and the comments on magnesium and potassium are very helpful. Thanks again.
Hi debbiew, I hope that your Mom does well with the RVD combination. It might take a few cycles to sort out how best to deal with side effects, but I think that is quite possible. Hopefully she can get some extra rest while she is starting on treatments again. Good luck and it is nice that you are there to help her too!
Hello Nancy! I was wondering ... since your values are now good, could your doctor not reduce Revlimid from 25 mg to 15, or even 10? My doctor did that as soon as he thought it was safe. I had told him that I found the high dose very unpleasant, at night it seemed to me that time never passed, I had a disturbed sleep, a sense of heaviness, of toxicity I would say, difficult to compare with anything else. Maybe your response is different from mine, but the side effects are obviously worse with the higher dose. Have your doctor and you ever considered the idea?
Hi Nancy it is very good to hear your disease is in great control and you life sine firstremissionhas been so good, hie acknowledging othes are notso fortunate. You as been promotedmay have a more indolent form of myeloma unklike many with high risk types. Revlimid did not work for me after a very aggresive clone took hold and affected my bloods and biochemisty badly. I had hoped it would because of how it is has been promoted. But we have no choice but to try.
Thanks Annamarie, My doctor and I do discuss the dosage of Revlimid / dex. It is a 'treatment' dose, not a 'maintenance' dose. Probably the dosages would be reduced in the future if my low monoclonal counts and good blood work holds steady. I get nervous about having another relapse since in Canada I don't have any other myeloma drugs to try except Pomalyst, outside of clinical trials. I have already taken Velcade, and one stem cell transplant!
Edna, I am sorry that the Revlimid did not work for you. This just highlights as to why we need different sorts of treatments, since not everyone responds the same way to a given type of treatment, or individual drug. I have been told that I have an 'indolent' form of myeloma actually, the very same word! This was at the time of diagnosis, when since I had a lot of lytic lesions and also fractures, my transplant doctor said that I must have already had myeloma for a long time! My chromosomal analysis from FISH did not show any high risk elements.
Have you also tried thalidomide? It is in the same drug family as Revlimid. I am not sure if there are other IMID's out there, but I had good results initially with Velcade, a proteasome inhibitor.
Nancy, thank you for sharing your thoughts. You've aptly described how so many of us feel. Whether we are patients or caregivers, it would be great to put myeloma behind us.
While no one would want to be on this journey, I'm so glad that you have some bright spots to celebrate along the way. The birth of your grandchildren and a good response to treatment sounds like a perfect way to start!
Thanks for suggestion Nancy. I have been fortunate to be given pomaldomide, which no doubt was thought better for my situation.
Your indolent form could give you long periods of remission. Enjoy the time with joyful family and activity. Everyone deserves happiness. I am writing this is hospital because I do not feel miserable. I am being looked after. Nurses are willing to print off results, so I can discuss with doctors.
The hospital computer keyboard is making typing correctly a pain!
Tabitha, thanks for your kind words. I know that you and Daniel have a lot to deal with, and I enjoy you sharing your thoughts too in your column. Won't it be nice if we ever get some treatments that were really clear 'game changers' to help us along?
I am glad to have done quite well so far, given where I started from 6 1/2 years ago, and have a good life now. But sometimes other cancer survivors I know seem to be in a full remission that lasts indefinitely. Of course, that is not always the case, so am counting my blessings too.
Edna, am glad to hear that you are taking pomalidomide, which is another IMID, isn't it? Hope that it works really well for you, with few side effects. I hope that your hospital stay is comfortable too.
Nancy,
I have always enjoyed reading your columns and posts. I feel like a kindred spirit. We share many of the same interests and have had similar experiences with our multiple myeloma. My numbers after 6 1/2 years are starting to fluctuate and I will likely have to undergo a treatment adjustment. For the past 3 years I have been on just a shot of Velcade once every 2 weeks with 8 mg of dex once every two weeks. However, my light chains are rising, so it looks like a course correction is in store. Like you, I am enjoying my granddaughter who was born on my birthday last year. I have traveled to Europe and stay physically active with my bike riding. I also sing in my church choir. I hope to maintain all of this as long as possible. Multiple myeloma is obviously on my mind all of the time. Otherwise you would never see me post on the Beacon. It is not, however, a burden that has weighed me down. I won't let it as long as I am able. I know you feel the same.
Well said Ron! If I didn't have other cheerful threads in my life, and have a full life apart from the myeloma, I don't think I could volunteer in this area very well! Your biking thread in the forum is an inspiration to many, and I also try to exercise every day, although am not at all an athlete (just got in from the snowy, icy sidewalks with the grandpuppy).
Can't really avoid thinking about myeloma, considering that I am on treatments for it, but am glad not to have to let it take over my life. Enjoy your family life and also the singing! My choir is into concert season now, and we sing songs in many languages, at retirement residences, a choral Christmas festival, and have a large concert too. I hope also to be with them for a long time. I hope that whatever treatments you need to do next will be tolerable for you. Happy holidays – I know it is Thanksgiving next week in the US.
Nancy,
Let me know when you intend to play the bagpipes again!
Good question! Probably after the choir season is over I could get them out of their box and tune up again. It takes me a while to get playing again. This year unfortunately my former pipe major died of myeloma. He fought it for six years. He was diagnosed right after me, which was a sad coincidence actually. He was so anemic that he kept dropping out of parades after a tune or two, which was unlike him, since he was a stellar player and a lifelong piper, who started the Clan Maxwell band. I joined them in 1990, but had to quit parades after fracturing a vertebra during a parade! He was 77 when he passed away. I used to see him sometimes at the cancer centre, and we always kept in touch. I didn't feel like playing since then, but of course, 'once a piper, always a piper'. It was my childhood instrument and I played then in a girls pipe band.