Looking for opinions, even though I know everyone on here has their own battles and questions ... any suggestions?
Current status: Remission (yes we are grateful)
Local oncologist: No answers. Just keep doing RVD [Revlimid, Velcade, dexamethasone]. Does NOT recommend transplant.
Saw a specialist yesterday. Very happy with results from RVD, not happy that both options have been used. He kept pushing for transplant (auto). Doctor said they have a clinical trial going on for mini allo, but he does not recommend this unless she is high risk. Bone marrow biopsy resulted in standard risk, however, it was an insufficient specimen to test for all high risk factors. He does not want to redo a bone biopsy test.
My mom does not want to transplant. Therefore we are not staying on RVD "indefinitely" I'm pushing either to travel to UAMS or the mini allo.
Should I just accept my mom's decision to stay on chemo and not insist on another bone marrow biopsy?
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Re: What would you do? So frustrated
Hi Hopeful27,
This is a very touchy subject.
First let me start by saying, your Mom being in remission is a wonderful thing!
You have gotten 2 opinions. Both very different. The local oncologist doesn't recommend transplant and the specialist does. What is the correct choice?
I don't wish to confuse you any further, but there is no correct choice. It must be a personal decision. You can make suggestions. You can take her to see different doctors and specialists. Show her different things you've read etc. But, bottom line, it needs to be her decision. Trying to talk her into something is only going to lead to heated "discussions" and lots of hurt feelings. This doesn't accomplish anything.
It sounds to me that she has already made her decision and does not want a transplant. This may be against what you believe, but be respectful of her decision. She may change her mind, she may not. I know my loved one really struggled with this. But, in the end, the final decision must be your Mom's.
Regards,
Kim
This is a very touchy subject.
First let me start by saying, your Mom being in remission is a wonderful thing!
You have gotten 2 opinions. Both very different. The local oncologist doesn't recommend transplant and the specialist does. What is the correct choice? I don't wish to confuse you any further, but there is no correct choice. It must be a personal decision. You can make suggestions. You can take her to see different doctors and specialists. Show her different things you've read etc. But, bottom line, it needs to be her decision. Trying to talk her into something is only going to lead to heated "discussions" and lots of hurt feelings. This doesn't accomplish anything.
It sounds to me that she has already made her decision and does not want a transplant. This may be against what you believe, but be respectful of her decision. She may change her mind, she may not. I know my loved one really struggled with this. But, in the end, the final decision must be your Mom's.
Regards,
Kim
Last edited by Jerseygyrl on Tue Jul 29, 2014 10:54 am, edited 1 time in total.
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: What would you do? So frustrated
Hi Hopeful,
It sounds like you've done so much work on behalf of your mom. That is a great thing to do. That being said, as a woman in her fifties myself, I feel that this is your mom's call. She's the patient. It is probably stressful for her to have ideas pushed at her like she has no say. After being diagnosed, we lose so much power anyway.
In regard to the bone marrow biopsy, I'm not sure that they would find anything out if she is in remission. I didn't get cytogenetics at diagnosis and then had another biopsy pre-transplant and there were not enough cancer cells to get them after 6 cycles of RVD.
Also, I would be surprised if they just leave her on the same dosage of RVD indefinitely. Often this is dialed back to lower doses or just Revlimid.
Did the specialist have a non-transplant plan in case your mom decides to go that route?
I think that the best thing would be to help your mom list the pros and cons of each option. Ask more questions of the specialist in order to do that. The research you have already done is amazing. You are a very caring daughter.
But ultimately, armed with all the information, your mom should decide and then feel supported in her decision.
Good luck to you and your mom. This is no easy road, that's for sure.
It sounds like you've done so much work on behalf of your mom. That is a great thing to do. That being said, as a woman in her fifties myself, I feel that this is your mom's call. She's the patient. It is probably stressful for her to have ideas pushed at her like she has no say. After being diagnosed, we lose so much power anyway.
In regard to the bone marrow biopsy, I'm not sure that they would find anything out if she is in remission. I didn't get cytogenetics at diagnosis and then had another biopsy pre-transplant and there were not enough cancer cells to get them after 6 cycles of RVD.
Also, I would be surprised if they just leave her on the same dosage of RVD indefinitely. Often this is dialed back to lower doses or just Revlimid.
Did the specialist have a non-transplant plan in case your mom decides to go that route?
I think that the best thing would be to help your mom list the pros and cons of each option. Ask more questions of the specialist in order to do that. The research you have already done is amazing. You are a very caring daughter.
But ultimately, armed with all the information, your mom should decide and then feel supported in her decision.
Good luck to you and your mom. This is no easy road, that's for sure.
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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: What would you do? So frustrated
What Kim and Joy said!
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: What would you do? So frustrated
What Steve said 
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What would you do? So frustrated
Hi,
I understand the very strong desire to help your mother make what you think is the best decision. From personal experience with my mother – who had other very serious health issues, but not multiple myeloma – I can tell you that pushing too much or, if she mistakenly thinks you're trying to take away her control over her life, could cause a significant deterioration in your relationship, perhaps even irreparable. At this time in her life, she is going to need you to support whatever she decides to do, not battle with you and multiple myeloma at the same time.
I was fortunate that my mother and I made our way back to a close and loving relationship before she passed. We were lucky to get that extra time to make our way back, but I could easily have lost her while our relationship was in a terrible state.
My husband has multiple myeloma and was adamant he would not have a transplant, either. However, he also thought it would be prudent to have his stem cells collected, just in case it ended up being the best option for him down the road. Has this been discussed with your mother, as kind of an insurance policy? If she doesn't even want to have her stem cells collected and put in storage (or if it's not an option due to insurance/financial reason), then you need to support that decision even though it will be difficult for you.
You've done a great job providing her information and being there for her. I hope your mom remains in remission for a very long time. Best wishes to you both.
Chris M.
I understand the very strong desire to help your mother make what you think is the best decision. From personal experience with my mother – who had other very serious health issues, but not multiple myeloma – I can tell you that pushing too much or, if she mistakenly thinks you're trying to take away her control over her life, could cause a significant deterioration in your relationship, perhaps even irreparable. At this time in her life, she is going to need you to support whatever she decides to do, not battle with you and multiple myeloma at the same time.
I was fortunate that my mother and I made our way back to a close and loving relationship before she passed. We were lucky to get that extra time to make our way back, but I could easily have lost her while our relationship was in a terrible state.
My husband has multiple myeloma and was adamant he would not have a transplant, either. However, he also thought it would be prudent to have his stem cells collected, just in case it ended up being the best option for him down the road. Has this been discussed with your mother, as kind of an insurance policy? If she doesn't even want to have her stem cells collected and put in storage (or if it's not an option due to insurance/financial reason), then you need to support that decision even though it will be difficult for you.
You've done a great job providing her information and being there for her. I hope your mom remains in remission for a very long time. Best wishes to you both.
Chris M.
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Chris M.
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