Northern Lights: Mental Changes With Multiple Myeloma
I recently had lunch with a group of fellow multiple myeloma patients, during which we touched on the problems we patients have had with memory and cognitive issues.
We all agreed that the treatments we have received seem to have affected our states of mind.
For me, that was particularly true after my stem cell transplant in January 2010. I was dealing with many aspects of "chemo brain" at the time. These problems included short-term memory loss, slower thinking, and trouble concentrating. Sometimes I would walk into a room to get something and completely forget why I was there. I also was having problems finding words and people’s names. I was weary and had trouble keeping up with the "normal" people in my life, which did not help me to stay mentally sharp.
Since then, I received treatment with Revlimid (lenalidomide) and dexamethasone (Decadron). I previously had one treatment holiday for over three years, and to my delight I once again am off any myeloma treatments (since September 2016).
Compared to the time around my stem cell transplant, I feel very much better now. My energy levels are much higher than before so that I can stay busy with my family (especially my three grandchildren, who are toddlers now), work, and hobbies. Babysitting toddlers does take mental energy and concentration because they have to be watched a lot of the time.
What has particularly improved for me is that I have more mental strength to deal with my myeloma. I am fortunate that my myeloma has become a chronic condition for me. After I got past the five-year survival mark, I realized that I had been fortunate and should try to live my life to the fullest now.
As far as cognitive issues go, I still have a few problems, but try to work around those.
I still stumble over words sometimes, and can’t speak quickly enough since I am searching for the right language to use. However, I don’t really blame myself any more for not finding a word to convey a specific meaning. My mother, sisters, and I have been playing Scrabble online since 2006, completing what now probably amounts to hundreds of the word games. I think that these games help with my focus and mental sharpness.
Another activity I practice that helps me with mental sharpness is writing, where I need to go over words and phrases to try to convey meanings. I have been writing this column since 2012, when I already was over two years into my myeloma journey, and that has been a huge help to me. Interacting with the folks who comment has been great too, since it makes me try to think from their point of view as well as my own.
To help with short-term memory loss, I have an agenda calendar notebook where I keep track of all my appointments, meetings, and other important information during the year and refer to it daily so that I don’t forget something.
At my choir, we have to memorize two songs per season to sing them "off book" (we just finished up another choir season and had to memorize "Loch Lomond" and "Distant Land"). That is a challenge, as adults can struggle to memorize things compared to younger folks, and I am no exception to that. However, I really believe it helps me to stay sharper.
And more broadly speaking, I think my choral singing is helpful in getting me to focus on details in the music such as timing, dynamics, pitch, and generally staying together with the conductor and the rest of the choir. As far as I am concerned, all of this can only have a positive impact on my brain.
On a lighter note, even a simple task of remembering where I have parked my vehicle in a large parking lot is improving for me now. At times a few years ago, I could get really confused about where I had parked, and I would walk around literally in large circles looking for it.
Maybe it was cognitive problems that caused me to overshop sometimes too. I am not sure how to define that, but when I look at the number of projects I have collected for my fiber arts hobbies, I just wonder what I was thinking. I obviously overestimated the amount of time I have to work on my hobbies.
Of course, the big question is what my state of mind would be if I had not had all of those treatments for multiple myeloma.
Although I can never know that for sure, and even though I am feeling much better now, I wonder if I have lost some of my cognitive abilities due to the treatments I received. At the same time, I also realize that I am nine years older now than I was when I was first diagnosed, and that some of my issues may also be related to the natural aging process.
Be that as it may, I’ve decided to make the best with what I’ve got and live life to the fullest.
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The quotation for this month is from Roger Walsh (1946 - ), a Australian professor of psychiatry, philosophy, and anthropology at the University of California, Irvine, who said: "Keeping a [journal] need not be a major chore - just a few minutes of notes each day can be valuable. Writing crystallizes insights, fools the defense of forgetfulness, and builds a collection of ideas and reflections that can spur further insights even years later."
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 .
Hello Nancy,
I live in Ancaster, Ontario, Canada, and I too was diagnosed in 2009. I had my transplant in 2012, so I am 6 years in remission. My oncologist has not recommended Revlimid for me, so I am not on any treatment. I am feeling good and back to enjoying life as before diagnosis. I am however bothered by short-term memory problems exactly like you have described. I find this very frustrating at times, but I like your attitude, so I just wanted to write and say thank you for sharing.
I turned 73 years in March, so I was thinking this memory problem was due to aging. Now I am thinking that the treatments before my stem cell transplant maybe affected my short term memory? Like you have written, it's maybe a bit of both.
Take care and I wish you continued good health.
Diana
Hi Nancy,
I have been reading all your columns for the past 6 months, since my mother was diagnosed. She is 56 and her diagnosis came as a shock. She is better now and we are still making sense of myeloma.
My two cents. I turned 44 in March and also have lesser cognitive ability since diagnosis and subsequent treatments. I don't doubt for one moment that treatments are largely responsible. Prior to my myeloma treatment I was very quick witted and never at a loss for words. Now I am hit and miss with it.
Though we could never prove treatments caused this, I am convinced as a result of stem cell transplant I have, be it mild some form of brain damage.
Thanks for the kind comments!
Diana - It's great that you have good health now too. That is sometimes a benefit of a stem cell transplant, that it deters the myeloma from progressing for quite a while. That is why I consented to have one after successfully being treated with Velcade plus dexamethasone. At that time I was quite naive about what having become a myeloma patient would entail! In your case six years is awesome and I hope your health keeps on that way. I looked up 'Ancaster', and see it is not far from Burlington. We have visited there and also Niagara Falls, which was really splendid. I liked the rock garden near there.
Nisha - Good luck to your mother and you and hope that all treatments she has had will get her into a remission and keep her there too.
Vicki - Take heart, for the "chemo brain" I experienced from the transplant did lessen over time. Probably I am still a little challenged but as I wrote, I work away at doing things to keep mentally alert. Another activity I had was to be the secretary for some volunteer groups after the first year of being a patient. That was helpful.
My birthday is also in March and I turned 67 this year. Now I feel that every birthday, or rotation around the sun as some people say, is a true cause for celebration!
What a great column, Nancy! Thank you for sharing both your "chemo brain" experiences as well as your strategies for dealing with them. My husband and I have talked about this and wondered what impact his treatment and upcoming stem cell transplant may have upon him, and I feel like we're better prepared if and when they come. We've already talked about returning to choir once his transplant is done, which we agree is a great way to practice mental sharpness, good breathing, and physical habits. Here's to your continued cognitive improvement and hopes that we will have the same great results! Take care, friend!
Thank you for sharing, Nancy.
I know cancer patients like to joke about “chemo brain” but I hate to think where my husband would be if I was not here to help him remember people, places, and dates. Like you, he will walk into a room and completely forget what he was doing. I really like your idea about Scrabble. He already writes things down in a journal-like calendar, and that is immensely helpful to him. I am trying to get him to do the New York Times mini crossword puzzle each day. Generally they are not too difficult. Your idea about memorizing choral pieces is great. Maybe I can get him to learn the lyrics of his favorite songs.
Keep on sharing as we all look forward to your columns.
Nancy,
Great column as always. I didn’t realize that we were transplant buddies. I had mine in January 2010, too.
I’ve been dealing with chemo brain ever since the transplant. Sometimes it’s worse than other times. I’m thankful for smart phones where I can put all of my events in the calendar app and make lists and notes in the note app. I would be lost without that. I also play word games that help me see patterns in combinations of letters.
One of the hardest thing is thinking of the appropriate word to use when speaking or writing. I find that I have to carefully edit the things I write looking for letter reversals and grammatical errors.
But, we work with what we have and continue moving forward.
Nancy
Thanks Tabitha, you and your husband are a good pair and I hope you both or he can return to choir. You just might have to be patient for awhile about catching more colds than usual, and having to miss practices sometimes because of that. The voice is an instrument that depends on us being healthy, so in that regard I think it is a sign of health to be able to sing!
Patty, your husband is in good hands with you helping him a lot at this time. Hopefully the cognitive issues will clear up and the forgetfulness will fade. Funny to think about forgetting about being forgetful, but the mind has a healing quality that way. Music and lyrics to songs can transport one to a happy place, so maybe that is why there are so many singers in the population. And scrabble is always fun. There would never be a duplicate game played of that for the words are always changing. Crossword puzzles are challenging too!
Nancy, thank you, I guess we are 'transplant buddies'. That is a coincidence! Your suggestions are very good, and I am sure that in our world of computers and cell phones that is a good way to stay organized. I don't know how we functioned before this modern era, actually!
Nancy,
I did not go the transplant route but experience the chemo brain effect just the same. All of the symptoms you described I have experienced. Dexamethasone is a two-edged sword. It usually "kicks in" about 5 hours after I take it (20 mg a week orally; five of the little blue 4 mg pills). Then for 24 hours I am up and am on top of things mentally. However, the second 24 hours I am still awake (can't sleep) but am mentally "tired". That is when I notice that I am less efficient at work and more forgetful.
Like you I try to stay mentally and physically active. Still work at age 66, sing in the choir, active with my biking and my grandchildren and have taken up finger picking blues on my guitar and accompanying harmonica. These keep me mentally challenged. Staying active mentally and physically is good therapy for anyone but especially cancer patients.
Thanks Ron, and good luck and have a nice summer! Hope your travels take you somewhere a little cooler than tropical Texas! I used to take trazodone, which is prescribed by neurologists and family doctors for patients who have sleep disorders. Then I could get some sleep when taking dexamethasone. I just took that for 2-3 days a week. The only side effect I noticed is that I would be slower in the morning! It seems there is no drug without some side effects or other.
Your singing, cycling, and now blues harp and guitar playing, plus your work, and your family, make you one busy person! I doubt that many people, let alone cancer patients, could keep up with your levels of activity. Hope you stay well, and I enjoy reading your posts in the 'Biking with Myeloma' forum thread. I have my fitness tracker to remind me to get enough exercise done every day, but it is not at that high level of activity!
I have enjoyed your columns for several years. I was diagnosed in 2009 and have not had a transplant. There has never been a time in 9 years that I have not been in treatment. Currently I am on Pomalyst, Darzalex, and dexamethasone. For the past ten months, my numbers indicate a partial remission and side effects have not been too bad. I do, however, deal with lack of energy and have had respiratory infections more frequently. I know the value of walking and keeping active through writing and journal keeping.
Thank you for your suggestions and positive spirit that inspire me.
Thanks for your comments, Joan, and best wishes to you. It's good to know that the regimen you are on is not too bad for side effects, although I imagine that going in to have transfusions regularly must be tiring. I am humbled that I can write these columns and have a positive effect on people, and must also thank my dear editor Maike Haehle for her help and the rest of the staff at the Beacon for providing this outlet for us all.
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