My 88 year old uncle has been diagnosed with early stage multiple myeloma. His hemoglobin count is 10 and there are no multiple myeloma lesions present in his bones. I understand that it is unusual, but only his light chain counts are off. He is anemic and has mildly decreased kidney function. He has also been susceptible to infections recently.
He has mild vascular dementia and short-term memory struggles but is otherwise very healthy, 'with-it', and living an independent and active life with his equally healthy wife. We are consulting with a specialist and feel quite comfortable with the oncology center. Our challenge is to understand the best course from here.
The doctor has said that it would be perfectly reasonable to do nothing at this point and continue to monitor his counts. The doctor also said it would be reasonable to choose a conservative, single-agent treatment approach using a low dose of Revlimid - possibly augmented by dexamethasone.
My role is to support my Uncle and Aunt. I go with them to the doctor appointments, listen, take notes, ask questions, research things, and help them navigate this new and unknown territory. I have no medical knowledge and don't necessarily know the right questions to ask. I certainly don't know how to evaluate the situation and help them choose the path from here. The decision is entirely theirs to make and I take the posture of giving advice when they ask, but I try not to 'steer' them.
As I read the side effects of the proposed drugs, the risks seem fairly significant. He feels well, though a bit fatigued now – does it make sense to expose him to the risk of side effects? The doctor has said that treatment could extend his life. If that extended life was at the same level as he has been living, that would be great. If, however, the drugs would make him ill and miserable then its an entirely different thing.
I know its not possible to predict with any precision. I am just trying to find a way to look at this with some objective measure. I would appreciate any thoughts, advice, experiences from those of you further along this path.
I am greatly heartened by the level of caring and sharing that I have read here. I wish you all the very best as you travel this road. Thank you.
Forums
6 posts
• Page 1 of 1
Re: Trying to evaluate the risk / reward of treatment
Msbrck1-
Your aunt and uncle are fortunate to have you to help them wade through what the diagnosis of myeloma means and possible treatment scenarios posed by your uncle's oncologist. The one thing that struck me in your description of your uncle's condition is that he is anemic and fatigued. Both of those go hand in hand because the anemia means that he has less oxygen reaching all of the cells of his body. This makes his muscles have to work harder to do their job in keeping his body going.
A low dose of Revlimid might help with decreasing the amount of myeloma so that the anemia decreases. In most cases, the side effects of Revlimid are fairly minimal. But, there can be some annoying GI problems and some fatigue. But, if your uncle develops side effects that interfere with his quality of life enough to be problematic, he can always stop treatment. Your uncle's oncologist has given him 2 very good options to choose from.
All the best to your aunt and uncle in choosing which way to go,
Nancy in Phila
Your aunt and uncle are fortunate to have you to help them wade through what the diagnosis of myeloma means and possible treatment scenarios posed by your uncle's oncologist. The one thing that struck me in your description of your uncle's condition is that he is anemic and fatigued. Both of those go hand in hand because the anemia means that he has less oxygen reaching all of the cells of his body. This makes his muscles have to work harder to do their job in keeping his body going.
A low dose of Revlimid might help with decreasing the amount of myeloma so that the anemia decreases. In most cases, the side effects of Revlimid are fairly minimal. But, there can be some annoying GI problems and some fatigue. But, if your uncle develops side effects that interfere with his quality of life enough to be problematic, he can always stop treatment. Your uncle's oncologist has given him 2 very good options to choose from.
All the best to your aunt and uncle in choosing which way to go,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Trying to evaluate the risk / reward of treatment
After my 3rd chemo treatment last year, I developed dizziness and balance issues. I fell several times in my home, flat on my back. I couldn't get anyone to take me seriously. Finally in early October I fell and was too dizzy to even sit up. I managed to crawl and just barely was able to reach the phone to call an ambulance. I was in hospital for two weeks and when I left I was very weak and using a walker. I graduated to using a cane which I still use when I leave my home. I haven't fallen since the ambulance episode though.
When I was in hospital I was taken off a number of meds, leaving me with Velcade, Dexamethasone, an anti-nausea pill I take on chemo day, and an anti-viral pill to prevent shingles. So while one of the discontinued medications probably had a lot to do with my falls, I am fairly sure my continued balance issues requiring me to use a cane relate to the Velcade or the Dex. I just don't know which. I'm in remission and will be finished chemo in early June at which point I will be stopping all drugs . I sure hope my balance returns.
I had a high dosage of Dex for the first month of chemo, then dropped to 40 mg a week. In February the dosage dropped again to 20 mg a week.
I have been trying to find others who have experienced this balance issue. The posts are rare and invariably have been from those 75+.
The point of this long-winded post
is to suggest that if your uncle goes on Dex that he be watched closely for balance issues developing. That could really affect the active lifestyle he enjoys now.
When I was in hospital I was taken off a number of meds, leaving me with Velcade, Dexamethasone, an anti-nausea pill I take on chemo day, and an anti-viral pill to prevent shingles. So while one of the discontinued medications probably had a lot to do with my falls, I am fairly sure my continued balance issues requiring me to use a cane relate to the Velcade or the Dex. I just don't know which. I'm in remission and will be finished chemo in early June at which point I will be stopping all drugs . I sure hope my balance returns.
I had a high dosage of Dex for the first month of chemo, then dropped to 40 mg a week. In February the dosage dropped again to 20 mg a week.
I have been trying to find others who have experienced this balance issue. The posts are rare and invariably have been from those 75+.
The point of this long-winded post
is to suggest that if your uncle goes on Dex that he be watched closely for balance issues developing. That could really affect the active lifestyle he enjoys now.-
cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Trying to evaluate the risk / reward of treatment
That's a tough question to answer, because it has so very much to do with the patient's own values and particular situation. A trial of low dose lenalidomide (Revlimid) with dex might be reasonable, knowing that you can stop it if the side effects are too significant.
If he does try treatment, it will become important to keep track of how he feels and how he's functioning. The tracking should start before he begins any treatment, so that you would all have a clear idea of whether or not the treatment is actually helping - believe it nor not, it can be difficult to remember!
If he does try treatment, it will become important to keep track of how he feels and how he's functioning. The tracking should start before he begins any treatment, so that you would all have a clear idea of whether or not the treatment is actually helping - believe it nor not, it can be difficult to remember!
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Trying to evaluate the risk / reward of treatment
Dexamethasone can affect the large muscles close to the body, ie hip muscles and shoulder muscels. So, being very aware of balance issues is important because the hip muscles may be weak from the dexamethasone. Not everyone experiences this, but with a person of your uncle's age, this is a really important side effect to know about. Other dex side effects that can be problematic are: sleeplessness for a day or two following the dose, hyperactivity for a day or two following the dose, mood changes (particularly aggressiveness), and with some people cognitive effects. With an older person these side effects could have even more deleterious effects of balance and well being.
So, your uncle's oncologist not automatically suggesting the use of the dex with Revlimid is a really wise decision on his part. If your uncle decides to try Revlimid and the doctor eventually recommends adding Dex, make sure that it is a low dose of Dex and his response to it is closely monitored. Low dose would be 20 mg a week, or even lower.
Nancy in Phila
So, your uncle's oncologist not automatically suggesting the use of the dex with Revlimid is a really wise decision on his part. If your uncle decides to try Revlimid and the doctor eventually recommends adding Dex, make sure that it is a low dose of Dex and his response to it is closely monitored. Low dose would be 20 mg a week, or even lower.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Trying to evaluate the risk / reward of treatment
Thank you all for your generous feedback and insights. It is so helpful to get information in this context and from the perspective of your experiences. The doctors are great, but reviewing the information on this site and receiving your direct input is remarkably steadying. Very thankful to have found this community and grateful for your support.
6 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories