Forums
Re: Giving up & stopping treatment
To larklodge and Eileen, I wish you all the strength you need to go through life right now. It sounds like you are facing some very difficult decisions right now. I hope you can find good counsel from the doctors to choose the right medical options and that you have lots of support from your loved ones.
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melizabe - Name: Melizabe
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: Giving up & stopping treatment
@alex - in August of '09, My husband, at 59, had a plasmacytoma on his T3 that was pressing against his spinal cord and paralyzing him from the chest down. radiation for a month and then had to learn to walk again! Oct. 2010 - he was diagnosed with multiple myeloma and started chemo. about a year later he got the SCT - he just had his 64th birthday! I wish you and everyone peace with your choices and healing prayers.
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larklodge
Re: Giving up & stopping treatment
I too had a stem cell transplant 3 years ago and now at 67 years old had a relapse in November 2016. Have been taking Pomalyst and finally was taken off of it last month because of all the side effects. My body just could not handle it. My counts are really looking good now.
I just had a treatment last week and for the 1st time had really bad side effects. Swollen face, feet and ankles. I have felt awful and told my husband I just want to stop all of these chemicals going through my body. I was fine until I was diagnosed and started all the crazy drugs. A little back and rib pain, but looking back, Tylenol was my best friend. I wonder how long it would have lasted if I had not gone for that annual physical. I could still just be taking Tylenol and feeling great.
I too wonder what will happen if I stop the drugs – how long will it take for the pain to come back. I am at my wits end of not feeling like a human any longer. The things I use to do are no longer an option.
I just had a treatment last week and for the 1st time had really bad side effects. Swollen face, feet and ankles. I have felt awful and told my husband I just want to stop all of these chemicals going through my body. I was fine until I was diagnosed and started all the crazy drugs. A little back and rib pain, but looking back, Tylenol was my best friend. I wonder how long it would have lasted if I had not gone for that annual physical. I could still just be taking Tylenol and feeling great.
I too wonder what will happen if I stop the drugs – how long will it take for the pain to come back. I am at my wits end of not feeling like a human any longer. The things I use to do are no longer an option.
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Suzann
Re: Giving up & stopping treatment
A timely topic! I have just had the19th anniversary of my stem cell transplant! Yeah! However, it came with a dark underside. It seems that treatment has stopped working, my light chain level (kappa) has increased a hundredfold, and apparently there are just no more 'weapons' on the shelf for me. To top that off, the dex has turned on me and seems to be affecting my adrenal system. I have major pain and am trying to adjust the dex, etc. I found what does help considerably is my consuming marijuana cookies, as it lessens the pain and I can still get a good night's sleep.
But this doesn't mean that I'll be giving up anytime soon. No, I have lots of things to see and do until then! I always remember that old saying, "Don't give up before the miracle happens!"
Thanks,
Gary
But this doesn't mean that I'll be giving up anytime soon. No, I have lots of things to see and do until then! I always remember that old saying, "Don't give up before the miracle happens!"
Thanks,
Gary
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Giving up & stopping treatment
Hi Gary H,
I am sorry to hear that you have not got more treatments to try in your battle with myeloma. I think you are Canadian, since I've seen your posts before. I wondered if you are seeing a myeloma specialist who might be able to get you access to drugs that, while not funded here yet, may be available from the drug company. Ninlaro comes to mind; there is a special access program from Takeda, even though pCODR did not recommend the drug for funding at this time. Could you ask your doctor about that? I guess that medical marijuana could help with your symptoms, but is not a anti-myeloma drug per se. Hope that helps and good luck.
I am sorry to hear that you have not got more treatments to try in your battle with myeloma. I think you are Canadian, since I've seen your posts before. I wondered if you are seeing a myeloma specialist who might be able to get you access to drugs that, while not funded here yet, may be available from the drug company. Ninlaro comes to mind; there is a special access program from Takeda, even though pCODR did not recommend the drug for funding at this time. Could you ask your doctor about that? I guess that medical marijuana could help with your symptoms, but is not a anti-myeloma drug per se. Hope that helps and good luck.
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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: Giving up & stopping treatment
Hi Nancy.
Yes, I live on Vancouver Island, and I have a doctor at the BMT ward in Vancouver! I have just finished a treatment of Ninlaro, also selinexor, and they both stopped working. He has me back on cyclophosphamide now and is currently 'shopping' around. He did mention that another one of his patients was taking a non-funded drug (in Vancouver) that he had to pay a lot for. I told him that when I win the lottery, i will fund a bunch of other people for it, but I'm not holding my breath!
You are right in that medical marijuana is not a anti-myeloma therapy, but the other properties of it assist me greatly in that it lessens the pain, allows me to get a full night's sleep, and generally just relaxes me. These are all major contributors to living with the disease!
Keep calm and carry on.
Yes, I live on Vancouver Island, and I have a doctor at the BMT ward in Vancouver! I have just finished a treatment of Ninlaro, also selinexor, and they both stopped working. He has me back on cyclophosphamide now and is currently 'shopping' around. He did mention that another one of his patients was taking a non-funded drug (in Vancouver) that he had to pay a lot for. I told him that when I win the lottery, i will fund a bunch of other people for it, but I'm not holding my breath!
You are right in that medical marijuana is not a anti-myeloma therapy, but the other properties of it assist me greatly in that it lessens the pain, allows me to get a full night's sleep, and generally just relaxes me. These are all major contributors to living with the disease!
Keep calm and carry on.
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Giving up & stopping treatment
Thanks for your reply, Gary.
You have certainly tried the latest drugs. Selinexor has a big clinical trial going also, and I thought it was good that Ninlaro is being funded right now. Too bad that Darzalex lost it's special access program at the end of December, but recently pCODR did recommend that Darzalex plus lenalidomide (Revlimid) or plus bortezomib (Velcade), as well as dex, should be looked at for funding.
Sounds like your doctor is very knowledgeable. Best wishes to you!
You have certainly tried the latest drugs. Selinexor has a big clinical trial going also, and I thought it was good that Ninlaro is being funded right now. Too bad that Darzalex lost it's special access program at the end of December, but recently pCODR did recommend that Darzalex plus lenalidomide (Revlimid) or plus bortezomib (Velcade), as well as dex, should be looked at for funding.
Sounds like your doctor is very knowledgeable. Best wishes to you!
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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: Giving up & stopping treatment
My 81-year-old mother was diagnosed with multiple myeloma a year ago. She tried Revlimid but it was too harsh on her. She got Velcade shots (and dexamethasone) for 8 months before it stopped being effective. The Velcade was tolerable, but made her pretty wobbly 2-3 days after treatment. Now she's started Darzalex (and Velcade and dex), and 2-3 days after her first infusion she got so weak she couldn't get out of bed for 4 days. We're going to try a second infusion, and hopefully it won't hit her as hard. She's down to about 90 pounds, but in general has always been healthy.
Here's my question: is it reasonable at some point to treatment because it feels worse than the underlying disease? Is ending treatment at age 81 and stage 3 multiple myeloma a death sentence? I just wonder if there's a point where we stop fighting the disease if it means a more comfortable end of life.
We'll be meeting with a palliative care specialist soon, but curious what the forum has to say as well.
Thank you.
Here's my question: is it reasonable at some point to treatment because it feels worse than the underlying disease? Is ending treatment at age 81 and stage 3 multiple myeloma a death sentence? I just wonder if there's a point where we stop fighting the disease if it means a more comfortable end of life.
We'll be meeting with a palliative care specialist soon, but curious what the forum has to say as well.
Thank you.
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Michael_A - Name: Michael_A
- Who do you know with myeloma?: mom
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 80
Re: Giving up & stopping treatment
Hi Michael,
Is your mother aware of the seriousness of her condition?
Do you have honest conversations about it?
When my wonderful father-in-law was dying, we kept it from him. And I feel we all lost out.
If she's aware of everything, it really is her decision.
If she isn't, and you know it's best she doesn't know, then it's your call.
I will choose quality over quantity every time.
If it was you, what would want? There's no guilt in choosing to make her remaining time as comfortable as possible.
I hope you trust her consultants. If you do, take their advice (tempered with your gut feelings).
My personal opinion is this: When we're dead, it's not going to make much difference if we'd lived another day / week / month / year. So putting her through treatments for the sake of a slim chance of a limited amount of time is ...
Is your mother aware of the seriousness of her condition?
Do you have honest conversations about it?
When my wonderful father-in-law was dying, we kept it from him. And I feel we all lost out.
If she's aware of everything, it really is her decision.
If she isn't, and you know it's best she doesn't know, then it's your call.
I will choose quality over quantity every time.
If it was you, what would want? There's no guilt in choosing to make her remaining time as comfortable as possible.
I hope you trust her consultants. If you do, take their advice (tempered with your gut feelings).
My personal opinion is this: When we're dead, it's not going to make much difference if we'd lived another day / week / month / year. So putting her through treatments for the sake of a slim chance of a limited amount of time is ...
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Giving up & stopping treatment
For what it's worth, I pretty much agree with Colm. Assuming her mind is sound, it should be up to her to determine how far she wants to take her treatment. From everything you've said, it does not sound likely that she will last long if she stops treatment. On the other hand, there's no guarantee that any of the treatments will prolong her life to any significant extent.
My elderly mother recently passed away after finding herself in a situation in which she could have prolonged her life, but doing so would have involved being bedridden and unable to eat. She saw no point to this and went home on hospice. She passed away a few days later, completely at peace with her decision. I have to say that seeing her go in such a calm manner was easier than watching her struggle with illness and side effects from medical procedures.
I think the best you can do is to make sure your mom has all of the information necessary for an informed decision and then to fully support her in whatever she wants to do and to keep her as comfortable and happy as possible through whatever the future brings.
My elderly mother recently passed away after finding herself in a situation in which she could have prolonged her life, but doing so would have involved being bedridden and unable to eat. She saw no point to this and went home on hospice. She passed away a few days later, completely at peace with her decision. I have to say that seeing her go in such a calm manner was easier than watching her struggle with illness and side effects from medical procedures.
I think the best you can do is to make sure your mom has all of the information necessary for an informed decision and then to fully support her in whatever she wants to do and to keep her as comfortable and happy as possible through whatever the future brings.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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