Welcome to the forum, wvjim. Sorry you have to be here, but I hope you find the information and community here helpful.
Has the tiredness increased since you've been on Revlimid? It does often cause fatigue, although the ups and downs of dex also can cause a lot of fatigue by themselves. That's why I'm wondering whether the fatigue has gotten worse since you started the Revlimid.
Make sure you're taking something to prevent blood clots while you're on Revlimid. It can be as simple as a baby aspirin, or something like Coumadin if you're at increased risk of developing blood clots. If you're doctor hasn't talked with you about this, make sure she/he does.
If you haven't seen it already, be sure to check out this posting: "Useful links to existing forum discussions". It has links to forum discussions on all sorts of treatment- and side effect-related topics. There may be answers there to many questions you have.
Best of luck to you,
Cheryl
Forums
Re: Any elderly multiple myeloma patients here?
Even though I'm 76, I don't really consider myself elderly. Delusional? Maybe.
I was diagnosed in December, 2014 and began treatment in early January. I decided to not undergo a stem cell transplant and enrolled in the elotuzumab monoclonal antibody (elo) study which included Revlimid 25 mg 21 days on 7 days off and 24 mg dexamethasone (dex) once a week before the "elo" infusion and 40 mg on alternate, no elo weeks.. My only side effects from the Revlimid was an occasional muscle spasm relieved by the soap "trick" or dill pickles plus light stretching. I have the usual sleep issues with the dex.
I just finished cycle 8 (32 weeks) with no problems. Currently on 15 mg Revlimid and 20 mg dex once a week. All abnormal values are now normal except for a persistent low M spike of 0.2 g/dL declining to 0.1 g/dL over the past eight weeks. It was 6.52 g/dL (65.2 g/L) at the start of therapy in January.
I second Cheryl's recommendation to discuss clot prevention with your oncologist. I also suggest that you strongly consider a second opinion from someone who focuses on myeloma, i.e. a myeloma specialist, if you are seeing a general oncologist.
Others here may also offer other suggestions.
Good luck and keep us posted on your progress.
Ted
I was diagnosed in December, 2014 and began treatment in early January. I decided to not undergo a stem cell transplant and enrolled in the elotuzumab monoclonal antibody (elo) study which included Revlimid 25 mg 21 days on 7 days off and 24 mg dexamethasone (dex) once a week before the "elo" infusion and 40 mg on alternate, no elo weeks.. My only side effects from the Revlimid was an occasional muscle spasm relieved by the soap "trick" or dill pickles plus light stretching. I have the usual sleep issues with the dex.
I just finished cycle 8 (32 weeks) with no problems. Currently on 15 mg Revlimid and 20 mg dex once a week. All abnormal values are now normal except for a persistent low M spike of 0.2 g/dL declining to 0.1 g/dL over the past eight weeks. It was 6.52 g/dL (65.2 g/L) at the start of therapy in January.
I second Cheryl's recommendation to discuss clot prevention with your oncologist. I also suggest that you strongly consider a second opinion from someone who focuses on myeloma, i.e. a myeloma specialist, if you are seeing a general oncologist.
Others here may also offer other suggestions.
Good luck and keep us posted on your progress.
Ted
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Ted Kan - Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 75
Re: Any elderly multiple myeloma patients here?
Nipon Ginko wrote:
Did you also have a transplant ?
I was in my mid 60's when diagnosed with multiple myeloma. Was on thalidomide and dex. for ten months. Went into remission and have stayed that way for 9 years, although I do have residual damage from the multiple myeloma and the drugs. I am now 4 inches (10 cm) shorter and have back pain any time I stand. Also have trouble walking due to severe problems with the bottom of my feet. Believe it's side effects of the dex, but no proof of that.
I am 74 years old and still able to mow my acre (0.4 hectare) lawn with a riding mower and drive my 1953 Ford F-100 pickup, so things are not too bleak. I do spend a lot of time on the computer – lots of knowledge to be learned here.
Did you also have a transplant ?
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Rick++ - Name: Rick
- Who do you know with myeloma?: me
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 69
Re: Any elderly multiple myeloma patients here?
My dad was recently diagnosed with stage 2 multiple myeloma at age of 75. The reason we found out about it was severe back pain. He had a few tumors on his back and one vertebrae was damaged.
He just finished a 3 week radiotherapy treatment and the pain has improved a lot. However, he still needs help to do pretty much anything and walks using a cane.
Renal function is normal, blood calcium levels normal, but a little anemic. He received 1 Zometa infusion and is scheduled to receive another one next week (4 weeks later).
He will start chemotherapy in 2 weeks – Velcade, melphalan, and prednisone (VMP regimen). Doctor wants to wait a little bit more to check his vertebrae again. He thinks that the cause of the pain might be due to tumor compression and not because of the fracture itself. So we will wait a few more weeks. In the meantime he is using a back support (spinomed 4 IV).
Anyone around his age that would like to share his / her experience?
I have been reading a lot and latest studies using VMP regimen on elderly people are showing some promising results.
He just finished a 3 week radiotherapy treatment and the pain has improved a lot. However, he still needs help to do pretty much anything and walks using a cane.
Renal function is normal, blood calcium levels normal, but a little anemic. He received 1 Zometa infusion and is scheduled to receive another one next week (4 weeks later).
He will start chemotherapy in 2 weeks – Velcade, melphalan, and prednisone (VMP regimen). Doctor wants to wait a little bit more to check his vertebrae again. He thinks that the cause of the pain might be due to tumor compression and not because of the fracture itself. So we will wait a few more weeks. In the meantime he is using a back support (spinomed 4 IV).
Anyone around his age that would like to share his / her experience?
I have been reading a lot and latest studies using VMP regimen on elderly people are showing some promising results.
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Rogerusp
Re: Any elderly multiple myeloma patients here?
OlderDaughter wrote:
Hi OlderDaughter,
Just saw your post about your 85-year-old mother. My 84-year-old husband (I'm 73) has just been diagnosed with multiple myeloma and the doctor is suggesting pills for treatment. Not yet begun treatment. Can I ask what form of treatment (pills or ?) your mother is getting. I'm just educating myself.
Thanks so much.
My mother, 85 and in relatively good health (she's very thin and light-boned) was recently diagnosed with multiple myeloma ...
Hi OlderDaughter,
Just saw your post about your 85-year-old mother. My 84-year-old husband (I'm 73) has just been diagnosed with multiple myeloma and the doctor is suggesting pills for treatment. Not yet begun treatment. Can I ask what form of treatment (pills or ?) your mother is getting. I'm just educating myself.
Thanks so much.
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carryon
Re: Any elderly multiple myeloma patients here?
To all those who've posted in this thread, thanks. I'm sitting typing in a hospital canteen, nursing a coffee, my 89-year-old mother having been diagnosed yesterday. Despite her age, this is an incredibly active and independent woman who does her own housework, cooking, and the like. Admittedly she walks with a stick, but otherwise been healthy and active.
A pain in her hip was first diagnosed as sciatica, then x-rays showed lesions on the hip and as the pain increased we realised it was a hip / femur break caused by the condition. This has all happened over 2 weeks. A half hip replacement operation was completed yesterday, but as yet we have only vague details overall, having had bone marrow samples taken earlier today. So far treatment hasn't even been discussed .
I've avoided Google until today and fortunately I found yourselves. I genuinely had no idea what to expect, so I certainly feel a little better / calmer reading the posts in here.
A pain in her hip was first diagnosed as sciatica, then x-rays showed lesions on the hip and as the pain increased we realised it was a hip / femur break caused by the condition. This has all happened over 2 weeks. A half hip replacement operation was completed yesterday, but as yet we have only vague details overall, having had bone marrow samples taken earlier today. So far treatment hasn't even been discussed .
I've avoided Google until today and fortunately I found yourselves. I genuinely had no idea what to expect, so I certainly feel a little better / calmer reading the posts in here.
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Harry in the uk
Re: Any elderly multiple myeloma patients here?
My 89 year old father was diagnosed in September 2016. He doesn't have any bone lesions and no complaints about bone pain. The oncologist started him on prednisone, melphalan, and lenalidomide (Revlimid). He had to have two blood transfusions the week of Thanksgiving because of low numbers and anemia.
His main complaint is not being able to do what he used to before he got sick. We have noticed that he is tired all of the time and has confusion and forgetfulness. Of course, the forgetfulness could be because of his age.
I live about 3 hours away and come to stay with him as often as I can, since I am still working. Luckily, I have 2 brothers and one sister who live within 30 minutes of him. I try to come up as often as possible to give them, especially my sister some relief from helping him.
I would love to hear and share experiences / learnings with other people in a similar situation. Thank you.
His main complaint is not being able to do what he used to before he got sick. We have noticed that he is tired all of the time and has confusion and forgetfulness. Of course, the forgetfulness could be because of his age.
I live about 3 hours away and come to stay with him as often as I can, since I am still working. Luckily, I have 2 brothers and one sister who live within 30 minutes of him. I try to come up as often as possible to give them, especially my sister some relief from helping him.
I would love to hear and share experiences / learnings with other people in a similar situation. Thank you.
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nancyt - Who do you know with myeloma?: my father
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 89
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