My mom was recently diagnosed with multiple myeloma. The doctors at the one facility she's at seems a bit careless. She's kinda confused from the calcium levels but has moments that are ok.
They just started her on chemo and dialysis because her kidneys were failing. (She been had kidney problems.) Her first dose of chemo was on February 28. That was on a Friday. Then another dose three days later and so on. So she's only been on chemo for 1 week and dialysis. They did not do a scan from my understanding (an MRI).
On Thursday (yesterday) they suddenly tell us chemo isn't working. I asked about other treatment options and that it seemed too soon to say that. They just said no one wants to hear that kind of news and was kinda nonchalant about the whole thing and had a meeting today.
So they were basically saying they want to put her in hospice. They have been kinda wanting to do that even before treatment. They never gave us a prognosis or stage or anything. It's more like they're just tired of her because she was giving them a hard time and refusing a lot of things at first.
Shes just been kinda scared through the whole thing. She seems a bit better to me. Pain has decreased and she doesn't really look sick like before. Just mainly tired I guess from the dialysis and chemo. But she seems a bit less confused.
So can anyone tell me when their doctor started to see results from the chemo? Most people say they don't do tests till like 4 to 6 week cycles.
Forums
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Appollo - Who do you know with myeloma?: my mother
- When were you/they diagnosed?: 2/26/14
- Age at diagnosis: 66
Re: How long until treatment has an effect?
Hi Appollo,
You are right. I believe most doctors do blood tests (that measure the proteins and cancer markers) after a complete cycle , maybe after 3 weeks. I generally have mine done once a month. That doesn't include the bloods that are drawn prior to each chemo treatment but those basically measure white counts and anemia, etc.
In my opinion it's far too soon to say that something isn't working in regard to the chemo. Seek out a myeloma specialist. Where are you located? Maybe someone has a suggestion as to where you could find one.
You are right. I believe most doctors do blood tests (that measure the proteins and cancer markers) after a complete cycle , maybe after 3 weeks. I generally have mine done once a month. That doesn't include the bloods that are drawn prior to each chemo treatment but those basically measure white counts and anemia, etc.
In my opinion it's far too soon to say that something isn't working in regard to the chemo. Seek out a myeloma specialist. Where are you located? Maybe someone has a suggestion as to where you could find one.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: How long until treatment has an effect?
I'm located in the Jacksonville, Florida area. I know Mayo is a good clinic, but they don't accept her insurance. From what I looked up Shands is the second from them they accept. So we're trying to get her over there.
They became kinda nasty after us wanting a second opinion and said they wouldn't aid us in any way trying to get her transferred.
Did you have any confusion/confused moments with your multiple myeloma?
They became kinda nasty after us wanting a second opinion and said they wouldn't aid us in any way trying to get her transferred.
Did you have any confusion/confused moments with your multiple myeloma?
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Appollo - Who do you know with myeloma?: my mother
- When were you/they diagnosed?: 2/26/14
- Age at diagnosis: 66
Re: How long until treatment has an effect?
Appollo,
May I ask what chemo regimen your Mom is on?
We started on CyBorD, which is cyclophosphamide, bortezomib, and dexamethasone, once a week for three weeks. Then a week off, and then another cycle of three weeks. We were also on dialysis because of high calcium levels every few days for the first 1.5 weeks we started treatment.
We could barely move or even walk, because the pain was so intense, and we also had random muscle spasms. Things seem to have gotten better after about 2 weeks of treatment, was able to get out of bed with assistance, and walk with assistance.
We were tired, but I think it was because of the pain medication (morphine) and anemia.
We didn't have any confusion moments, but I do know that may be one of the symptoms.
We were in the hospital for a total of three weeks, but still undergoing treatment as we speak. At the hospital, we had bloodwork everyday for kidney function. However, it was only after we left the hospital 3 weeks later that the oncologist/hemtologist re-checked the blood work with respect to myeloma.
Best wishes,
InQ
May I ask what chemo regimen your Mom is on?
We started on CyBorD, which is cyclophosphamide, bortezomib, and dexamethasone, once a week for three weeks. Then a week off, and then another cycle of three weeks. We were also on dialysis because of high calcium levels every few days for the first 1.5 weeks we started treatment.
We could barely move or even walk, because the pain was so intense, and we also had random muscle spasms. Things seem to have gotten better after about 2 weeks of treatment, was able to get out of bed with assistance, and walk with assistance.
We were tired, but I think it was because of the pain medication (morphine) and anemia.
We didn't have any confusion moments, but I do know that may be one of the symptoms.
We were in the hospital for a total of three weeks, but still undergoing treatment as we speak. At the hospital, we had bloodwork everyday for kidney function. However, it was only after we left the hospital 3 weeks later that the oncologist/hemtologist re-checked the blood work with respect to myeloma.
Best wishes,
InQ
Re: How long until treatment has an effect?
InQ,
I know shes on two of the ones you mentioned -- bortezomib [Velcade] and dexamethasone. They are also giving her steroids and oxycodone for pain and sometimes something else through the IV. I think that's whats also aiding in the confusion part. Because it seems when shes not taking the pain med like that she seems in her right state of mind.
I know shes on two of the ones you mentioned -- bortezomib [Velcade] and dexamethasone. They are also giving her steroids and oxycodone for pain and sometimes something else through the IV. I think that's whats also aiding in the confusion part. Because it seems when shes not taking the pain med like that she seems in her right state of mind.
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Appollo - Who do you know with myeloma?: my mother
- When were you/they diagnosed?: 2/26/14
- Age at diagnosis: 66
Re: How long until treatment has an effect?
I am sorry to hear your mother is going through such a hard time. I think it is important you get your mom to a multiple myeloma specialist. You should also be able to have trust in your doctor and be a better to converse with them about anything, It concerns me they did not assist in referring you to someone for a second opinion. Please keep us informed about your mom.
Best wishes.
Best wishes.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How long until treatment has an effect?
I have a hard time understanding their actions.
Your mother is getting Velcade with a steroid and that is exactly what my regimen was. I had a series of 3 and then a short rest period and then it was repeated. I was also put on dialysis so that isn't part of the equation. I didn't have a serum or urine check for a month after I started. My only test was a serum test to check my immunity to insure it was high enough for the treatment.
I would most definitely be looking for a second opinion somewhere.
Your mother is getting Velcade with a steroid and that is exactly what my regimen was. I had a series of 3 and then a short rest period and then it was repeated. I was also put on dialysis so that isn't part of the equation. I didn't have a serum or urine check for a month after I started. My only test was a serum test to check my immunity to insure it was high enough for the treatment.
I would most definitely be looking for a second opinion somewhere.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: How long until treatment has an effect?
kjpoppit,
Yeah they were basically offended and in their feeling when we suggested the second opinion. It may be because of what i said too. about the specialist who specialized in multiple myeloma so I guess they thought i was degrading them. In a way i was because that seemed really soon to say that it wasnt working and saying their is no other options for. They even arranged hospice for her without us even agreeing to it.
Wayne K,
It was hard for us understanding it as well. But i found out that we are not the first people they have done this too. when you said you had a series of 3, do you mean you had one week of chemo that only required 3 doses or you was on chemo for 3 weeks?
Yeah they were basically offended and in their feeling when we suggested the second opinion. It may be because of what i said too. about the specialist who specialized in multiple myeloma so I guess they thought i was degrading them. In a way i was because that seemed really soon to say that it wasnt working and saying their is no other options for. They even arranged hospice for her without us even agreeing to it.
Wayne K,
It was hard for us understanding it as well. But i found out that we are not the first people they have done this too. when you said you had a series of 3, do you mean you had one week of chemo that only required 3 doses or you was on chemo for 3 weeks?
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Appollo - Who do you know with myeloma?: my mother
- When were you/they diagnosed?: 2/26/14
- Age at diagnosis: 66
Re: How long until treatment has an effect?
Hi Appollo. Definitely get your mother away from her current doctors. No good doctor is offended when a patient seeks a second opinion, and no one treating cancer should act careless or casual.
In general, it takes 6 weeks to know if the patient is responding to the medication. I took thalidomide and dex as my induction treatment and was told it would take 6 weeks until we knew if I was responding. I knew I was responding the dex immediately because it took the bone pain away. I also started getting side effects from the thalidomide after about 2 weeks, so I was pretty sure I was responding to it, too (which I was).
If your mom is hypercalcemic, they can treat that immediately and end her confusion from that. Right after I was diagnosed, I ended up in the hospital for nearly a week with hypercalcemia but felt great once the high levels of calcium were flush from my body. Your mom will also need to drink plenty of fluid and move around to keep the calcium levels down and not affecting her kidneys.
Good luck and please let us know how she is doing.
In general, it takes 6 weeks to know if the patient is responding to the medication. I took thalidomide and dex as my induction treatment and was told it would take 6 weeks until we knew if I was responding. I knew I was responding the dex immediately because it took the bone pain away. I also started getting side effects from the thalidomide after about 2 weeks, so I was pretty sure I was responding to it, too (which I was).
If your mom is hypercalcemic, they can treat that immediately and end her confusion from that. Right after I was diagnosed, I ended up in the hospital for nearly a week with hypercalcemia but felt great once the high levels of calcium were flush from my body. Your mom will also need to drink plenty of fluid and move around to keep the calcium levels down and not affecting her kidneys.
Good luck and please let us know how she is doing.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: How long until treatment has an effect?
If the M-protein is the marker of disease, it takes about 8 weeks to get a good assessment of response. The immunoglobulin made prior to the start of treatment circulates in the blood for 6-8 weeks. Although with effective treatment, you should start to see a decline in the M-protein after the first cycle of therapy.
Light chain response assessment can be much quicker (within days) although with abnormal kidney function it takes longer to see a difference.
Light chain response assessment can be much quicker (within days) although with abnormal kidney function it takes longer to see a difference.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
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