I have often come to this site over the past 5 years for answers and support and have found it very helpful!
My mother was diagnosed with multiple myeloma 5 years ago. It has been a journey of ups and downs. She has been on most of the chemo meds on the market, with both good and bad results.
I feel we are coming to the end of our journey, but I'm not sure what to expect next. We are out of options for treatments. Velcade has always been her "go to" chemo treatment, but now it has stopped working. I have always been able to tell when her levels have spiked because of her symptoms, pain, fatigue, confusion and GI issues. I don't feel comfortable with stopping all chemo, because in the past it has kept her from being in pain.
I've been told that myeloma will not kill her since it does not attack any vital organs. I'm worried about a long, drawn out, painful time ahead.
I would love some insight from those who have been here before. Thanks!
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Re: Multiple myeloma journey nearing the end - what's next?
I am sorry that your Mom is having such a tough time with her myeloma. Is she being treated by a myeloma specialist? This is very important. As far as Velcade is concerned, there are many newer drugs, if she is no longer responding to it. There is Kyprolis (carfilzomib), which is another very effective proteasome inhibitor like Velcade, which sometimes works even when patients are refractory to Velcade. Has she ever used Revlimid? If she has and is refractory, there is a whole new class of drugs, Empliciti (elotuzumab) and Darzalex (daratumumab), which were approved last year in the U.S, These are monoclonal antibodies. Has she had a stem cell transplant? Has she collected her stem cells yet for one?
You say that the doctors indicate that her organs are not being affected. That is a good thing. It would seem that she may have some options left to arrest her disease. There are also clinical trials to consider. How old is she? Does she have other comorbidites / chronic illnesses?
Please be specific about what other drugs and treatments she has tried, her current status in terms of her bloodwork, and any other information you can provide about her condition. Also, where do you live? There are some treatments and drugs that are more readily available in some places and not others.
There are many knowledgeable people on the forum who may be able to make some good suggestions. Please get back to us.
Ellen Harris
You say that the doctors indicate that her organs are not being affected. That is a good thing. It would seem that she may have some options left to arrest her disease. There are also clinical trials to consider. How old is she? Does she have other comorbidites / chronic illnesses?
Please be specific about what other drugs and treatments she has tried, her current status in terms of her bloodwork, and any other information you can provide about her condition. Also, where do you live? There are some treatments and drugs that are more readily available in some places and not others.
There are many knowledgeable people on the forum who may be able to make some good suggestions. Please get back to us.
Ellen Harris
Re: Multiple myeloma journey nearing the end - what's next?
Thanks, Ellen.
My mom is 85 years old. She is seeing a myeloma specialist. We live in South Alabama and are very happy with her care through Mitchell Cancer Institute. She has been on all of the drugs you have mentioned (and more) except Darzlelex. They have either stopped working or caused side effects that are a danger to her. Velcade, Revlimid, Pomalyst, Kyprolis, melphalan, I may be forgetting one. She has has blood clots and some pretty severe neuropathy (up to her knees and fingers). The chemo has also weakened her lungs. She has been officially diagnosed with chronic lung disease. She is good for at least one trip a winter to the hospital for pneumonia.
Since the first infusion of Darzalex takes so long, her oncologist didn't see any other way to give it to her without her being in the hospital. Bottom line, she doesn't want to go to the hospital.
Her indicator is her IgG levels. She was at 3000+ upon diagnosis. She has been below 1000 on 3 occasions in the last 5 years and been considered in remission. But that was short-lived as chemo stopped working. Most recently her level is 5000+ and she is as symptomatic as she was 5 years ago before she was diagnosed.
Her number one complaint is pain, which we are trying to control with a fentanyl patch.
She lives in an assisted living complex which will help her with some daily necessities, like meals and medications.
I am especially interested in anything that is found to help with symptoms, short of administering more chemo.
My mom is 85 years old. She is seeing a myeloma specialist. We live in South Alabama and are very happy with her care through Mitchell Cancer Institute. She has been on all of the drugs you have mentioned (and more) except Darzlelex. They have either stopped working or caused side effects that are a danger to her. Velcade, Revlimid, Pomalyst, Kyprolis, melphalan, I may be forgetting one. She has has blood clots and some pretty severe neuropathy (up to her knees and fingers). The chemo has also weakened her lungs. She has been officially diagnosed with chronic lung disease. She is good for at least one trip a winter to the hospital for pneumonia.
Since the first infusion of Darzalex takes so long, her oncologist didn't see any other way to give it to her without her being in the hospital. Bottom line, she doesn't want to go to the hospital.
Her indicator is her IgG levels. She was at 3000+ upon diagnosis. She has been below 1000 on 3 occasions in the last 5 years and been considered in remission. But that was short-lived as chemo stopped working. Most recently her level is 5000+ and she is as symptomatic as she was 5 years ago before she was diagnosed.
Her number one complaint is pain, which we are trying to control with a fentanyl patch.
She lives in an assisted living complex which will help her with some daily necessities, like meals and medications.
I am especially interested in anything that is found to help with symptoms, short of administering more chemo.
Re: Multiple myeloma journey nearing the end - what's next?
Maria,
Treatment at your Mom's age can be challenging. You certainly don't want to put her through treatments which will make her quality of life worse just perhaps to give her a couple of months.
However, she is the one who has to make the decision, if she is able, in conjunction with you, the rest of the family, and her doctors.
But, you do want her pain to be under control whatever she decides. I would try to find a doctor who will prescribe the right drugs / treatments to alleviate as much of her discomfort as possible. Sometimes that is a palliative care doctor, sometimes it is pain management doctor, and sometimes it is hospice. The fentanyl patch may not be enough.
I am hoping that she has some significant time left, that she can enjoy it, and that you can be with her.
Ellen Harris
Treatment at your Mom's age can be challenging. You certainly don't want to put her through treatments which will make her quality of life worse just perhaps to give her a couple of months.
However, she is the one who has to make the decision, if she is able, in conjunction with you, the rest of the family, and her doctors.
But, you do want her pain to be under control whatever she decides. I would try to find a doctor who will prescribe the right drugs / treatments to alleviate as much of her discomfort as possible. Sometimes that is a palliative care doctor, sometimes it is pain management doctor, and sometimes it is hospice. The fentanyl patch may not be enough.
I am hoping that she has some significant time left, that she can enjoy it, and that you can be with her.
Ellen Harris
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