This week’s poll is about how quality of life changes after being diagnosed with multiple myeloma. For some people, their myeloma is discovered by chance during routine blood tests. For others. their myeloma is discovered after debilitating bone damage. Those who are newly diagnosed, therefore, may be very interested in knowing what impact myeloma may have on their quality of life.
A few clarifications:
First, this poll is for people who have been diagnosed with multiple myeloma (symptomatic / active myeloma; not those who currently have MGUS or smoldering myeloma). If you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.
Second, quality of life can often be very different at diagnosis, during treatment, during remission, and when myeloma progresses. Please compare your current quality of life (from the last few weeks) to your quality of life around the time you were diagnosed with myeloma.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers. For instance, please explain what your quality of life was like at diagnosis and what it's like now.
You may also be interested in the results of a previous poll that asks: How does your current quality of life compare to your quality of life prior to your multiple myeloma symptoms and diagnosis?
https://myelomabeacon.org/forum/weekly-poll-quality-of-life-t1190.html
Forums
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
I went moderately better because I did have 3 compression fractures at diagnosis and that restricts me for doing some of the exercises that I used to do. No more squats! Fortunately I do not experience any pain from the compression fractures. Other than that I would have said significantly better. The only pharmaceutical drug I currently take is Zometa. I have not experienced any side effects from my Zometa infusions so I can say I am currently free of therapy related side effects. Little things used to bother me - no more. I always tell everyone they never have to ask me how my day went - I view everyday as a great day. I also had the privilege of meeting my Donor. I am biased but I think stem cell donors are the most special people in the world. I know a lot of other transplant recipients would agree with me!
It would be great if some of the patients that are saying significantly or moderately better would comment on what their therapy history is. It may help others decide what therapy route to choose. I was 4 cycles of Velcade/Doxil/DEX (got me to VGPR), auto (to CR) and partially t-cell depleted allogeneic transplant to molecular CR (PCR negative). I have been off all myeloma drugs for 31 great months and counting!
It would be great if some of the patients that are saying significantly or moderately better would comment on what their therapy history is. It may help others decide what therapy route to choose. I was 4 cycles of Velcade/Doxil/DEX (got me to VGPR), auto (to CR) and partially t-cell depleted allogeneic transplant to molecular CR (PCR negative). I have been off all myeloma drugs for 31 great months and counting!
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Mark
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
I said 'moderately worse', since although I am well now and extremely grateful for that, the compression fractures that I had now do cause aches and pains at times. I can tell if I have been 'overdoing' it that way! I cannot do some of the activities that I could before, such as running and down hill skiing. But that is a small price to pay for being a myeloma cancer survivor. I have, like Mark, also been free from taking chemo for 31 months! That is a coincidence! But I am frequently monitored and I certainly may need more help for my myeloma. Hopefully it won't get way out of control as it was at the time of diagnosis. So the other way in which I am 'moderately worse' is that I do worry more than I would like to!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
My vote goes to "moderately better". Basically it all comes down to pain & my mental state; what it was like then & what it is now. At diagnosis I had one pathological fracture of the spine (soon after I gave myself two additional compression fractures), I couldn't roll over in bed and I was in constant pain. Every now & then I would stub a toe or jolt my body and the pain was so intense that I didn't want to breathe, the sort of pain that brings tears to your eyes instantly - it didn't last long but it was shocking. As for my mental state - that sort of pain isn't normal so I knew something was seriously wrong but didn't know what it was - emotionally that is not a good place to be.
Now, I still have pain - depending on what I do, however it is not as intense as that pathological fracture (or some of the pain I experienced during my autograft). As for my mental state
I know what the disease is and after the allograft I think it is under control. My sense of humour did disappear for a while but its coming back. 
Now, I still have pain - depending on what I do, however it is not as intense as that pathological fracture (or some of the pain I experienced during my autograft). As for my mental state
I know what the disease is and after the allograft I think it is under control. My sense of humour did disappear for a while but its coming back. -
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
I checked moderately worse but maybe it's only slightly worse. When diagnosed with HR myeloma I had no symptoms except anemia but for many reasons when I reached a CRAB symptom I had SCT. That seems to have put me in complete remission but the maintenance and recovery has affected my quality of life. I have realized that since I wasn't in pain, hadn't had bone lesions, wasn't getting sick, the relief that many get from treatment didn't show up for me. After a year I am slowly realizing that life goes on after treatment, and that maybe some of the "side effects" are just those of age. I'm 70. I suppose that part of my experience was being diagnosed so early, before the damage.
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
I put significantly better.
At diagnosis I was just so sick, i felt terible for a long time (Specialist confirmed I had been living with active multiple myeloma for at least two years) I was fatigued, very anemic (blood transfusion level), had been dealing with very significant infections, and had many other symptoms due to such a high M-protein including rare hyperviscocity syndrome, which in itself has a host of symptoms (nose bleeds, migraines, trouble thinking etc).
I was admitted to the hospital for many many tests and was started on high dose steroids IV. This waslater switched to Dex (highdose pulsed) a few weeks later I srated chemo with Velcad/Dex, and then cyclophosphomide, and then I finished up twith a Stem Cell transplant 5 months later.
I am three years out of treatment. It was a long road to regain all my muscle (muscle wasting) and loose the weight i gained from steroids, but I feel prety good nearly every day when I wake up
When I compare today with how I felt the day I was diagnosed it is like night and day. today I feel normal (like a 3o something year old person should feel like)
At diagnosis I was just so sick, i felt terible for a long time (Specialist confirmed I had been living with active multiple myeloma for at least two years) I was fatigued, very anemic (blood transfusion level), had been dealing with very significant infections, and had many other symptoms due to such a high M-protein including rare hyperviscocity syndrome, which in itself has a host of symptoms (nose bleeds, migraines, trouble thinking etc).
I was admitted to the hospital for many many tests and was started on high dose steroids IV. This waslater switched to Dex (highdose pulsed) a few weeks later I srated chemo with Velcad/Dex, and then cyclophosphomide, and then I finished up twith a Stem Cell transplant 5 months later.
I am three years out of treatment. It was a long road to regain all my muscle (muscle wasting) and loose the weight i gained from steroids, but I feel prety good nearly every day when I wake up
When I compare today with how I felt the day I was diagnosed it is like night and day. today I feel normal (like a 3o something year old person should feel like)
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
As an earlier poster also experienced, I was diagnosed through blood tests...I had mild anemia. At the time I felt great, was doing fine, didn't have bone damage or anything else. Then I was diagnosed with stage II Multiple Myeloma, with a p17 deletion (which makes me 'high risk') and off I went on the chemotherapy SCT carnival ride. I'm two months on the other side of the stem cell transplant, and dealing with all the interesting side effects THAT causes (still no hair, for one thing)
..........so, I would have to say that my quality of life is a lot worse than it was this time last year, just before my diagnosis.
On the other hand, I'm told that I responded very well to the chemo and SCT, and once I recover from the cure, I should do very well. So...perhaps the 'quality of life' assessment should be qualified as 'temporary?"
Hope so, anyway.
..........so, I would have to say that my quality of life is a lot worse than it was this time last year, just before my diagnosis.
On the other hand, I'm told that I responded very well to the chemo and SCT, and once I recover from the cure, I should do very well. So...perhaps the 'quality of life' assessment should be qualified as 'temporary?"
Hope so, anyway.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
I also rated my life as moderately better because I was seriously anemic at the time of diagnosis. Now, I am still anemic, but almost within the low normal range and stay steady at that level. I do have some cognitive issues that have interfered with how I was able to do my job and decided to retire. I do still get fatigued more easily and have to respect that since I don't recover as quickly. And, Dex does do a number on me that I have to factor into my life for about 2 days each week. So, better than when I was diagnosed on some levels and some worse on other levels. Making it overall moderately better than at diagnosis.
Nancy in Phila
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
I voted significantly better because of my pain level. I dealt with lower back pain for almost 3 months, including visits to a chiropractor. The pain just gradually got worse and worse until I ended up in the ER. I kept putting it off as I had no insurance.
Turned out I had 4 fractures and the pain was horrible and began appearing in my ribs as well. I was showing signs of kidney failure and anemia but only symptom was the pain. Couldn't do anything. It hurt to ride in a car and hit the slightest bump. Felt like that for almost 4 months before it subsided.
So for me, significantly better as I am now able to function, albeit not like I use to...but I'll take it!
Turned out I had 4 fractures and the pain was horrible and began appearing in my ribs as well. I was showing signs of kidney failure and anemia but only symptom was the pain. Couldn't do anything. It hurt to ride in a car and hit the slightest bump. Felt like that for almost 4 months before it subsided.
So for me, significantly better as I am now able to function, albeit not like I use to...but I'll take it!
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Weekly Poll - Quality Of Life Now Compared To Diagnosis
It would be great if more people would have put down their treatment history. I am glad that so many are in the "better" categories. From the small group of us that posted it seems there are 2 factors that I would have thought would be the case. Younger age seems to be associated with recovery and patients that did transplants and than had a drug free period are the factors that seem to predict better quality of life.
For those that did transplants I thought you might "get a kick" out of seeing this video. Allogeneic transplants are not only a cure for blood cancer but they can also cure sickle cell disease as well. Check out how much energy this 5 year old patient has after getting what the doctor describes as the most aggressive chemotherapy (8 days worth) they use. This special young man looks like he has more energy than every patient on my adult transplant unit did combined on any given day!
http://www.myfoxdetroit.com/story/24138518/young-superhero-battling-sickle-cell-disease-gets-bone-marrow-transplant
For those that did transplants I thought you might "get a kick" out of seeing this video. Allogeneic transplants are not only a cure for blood cancer but they can also cure sickle cell disease as well. Check out how much energy this 5 year old patient has after getting what the doctor describes as the most aggressive chemotherapy (8 days worth) they use. This special young man looks like he has more energy than every patient on my adult transplant unit did combined on any given day!
http://www.myfoxdetroit.com/story/24138518/young-superhero-battling-sickle-cell-disease-gets-bone-marrow-transplant
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Mark
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