I met a woman in her late 50's who has had multiple myeloma for 10 years. Talking to her, she told me that she has been through all the various drugs over the years, had two stem cell transplants, numerous broken bones, and is just exhausted. She's alive in the physical sense, but, due to the toll treatment and the disease has done to her, she has decided to cease all treatment.
I never really thought about giving up, but I will say that, after a couple of years of treatment, I do see where my body has suffered some erosion. I'm sure that, as my current treatment stops working and I go on another treatment, I'll have another set of side effects to suffer from. Maybe the years of this constant cycle of treatments, side effects, and the impact on your personnel life begin to be too much?
Listening to her, I felt that her decision made perfect sense and it's very possible I could find myself in that situation down the road.
Thoughts from the rest of you?
Forums
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Giving up & stopping treatment
I was ready to stop treatment after 2 months. Am now entering my second year of Revlimid + dexamethasone. The steroids are the worst , but they have been slowly cut back. My doctor has told me if I want to take a break for a few months, I can, but I am so afraid of the pain coming back.
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morrow1022
Re: Giving up & stopping treatment
I understand this decision and respect it. This topic dovetails into an area of aggravation for me. Cancer lingo. War, winning the battle, no surrender, fighting, etc. I think this trend is offensive to cancer survivors. One prominent blood cancer charity uses this language all the time. If someone wants to "give up" they should be able to do that without terms like "lost the battle" being thrown out.
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Allison - Name: Allison
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2007
- Age at diagnosis: 52
Re: Giving up & stopping treatment
I just went through a rough half year. Double pneumonia, blood transfusions, anemia, pneumonia again, nose bleeds that required emergency room visits at all hours of the early, early a.m., and then electric cauterization! I lost 30 plus pounds in 6 months! I really felt like quitting, but I just (2 years ago) started this journey called multiple myeloma, and I go at it again.
I too am in my late 50's (57 this year). And I have two young grandchildren that live close to me. I look at them and push on. But I can relate! My doctors took me off all treatments and said to take a break, I'm still in remission, and I feel better! But in the back of my mind, I dread multiple myeloma rearing up again.
So I wish her strength, grace, and support on her continuing journey, because our mindset and attitude is 80 per cent of our battle!
I too am in my late 50's (57 this year). And I have two young grandchildren that live close to me. I look at them and push on. But I can relate! My doctors took me off all treatments and said to take a break, I'm still in remission, and I feel better! But in the back of my mind, I dread multiple myeloma rearing up again.
So I wish her strength, grace, and support on her continuing journey, because our mindset and attitude is 80 per cent of our battle!
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Giving up & stopping treatment
I have been on this journey for 18 years and had every available drug. I think positively but still I suspect there will come a time when I say "enough". But not yet.
I am 65 and fighting my fourth relapse. This time it has been a long, hard fight with Velcade & dex all last year and, since December, a clinical trial of pomalidomide [Pomalyst, Imnovid] and dex. I am sick of the side effects of the steroid and wish I could stop that drug, but I know all chemo drugs are more effective with the steroid, so I soldier on.
I am lucky in that I have not suffered many symptoms of the disease - it's the treatment that has an effect on me. I am not ready to give up for a long time yet but respect anyone's decision to do so.
I am 65 and fighting my fourth relapse. This time it has been a long, hard fight with Velcade & dex all last year and, since December, a clinical trial of pomalidomide [Pomalyst, Imnovid] and dex. I am sick of the side effects of the steroid and wish I could stop that drug, but I know all chemo drugs are more effective with the steroid, so I soldier on.
I am lucky in that I have not suffered many symptoms of the disease - it's the treatment that has an effect on me. I am not ready to give up for a long time yet but respect anyone's decision to do so.
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SusanMary - Name: Susan Brown
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 1996
- Age at diagnosis: 47
Re: Giving up & stopping treatment
My mom's doctor mentioned the choice of stopping chemo for her today. She was diagnosed last year and her condition was already really severe. She's been on 4-5 different types of chemo with different combinations and nothing has worked so far. Her condition has worsened since last year and her pain from multiple myeloma has increased significantly. She cries every day because the pain medication, which has changed so many times as well, hasn't helped her much recently.
I also have to take her to the ER several times per month because the pain isn't manageable, she's very anemic, or have some other issues since the diagnosis. She goes to the General Hospital because she was unemployed and had no insurance when she was diagnosed. Now she's in medicare.
I don't really know how to respond to this when the doctor mentioned it as an option. They said they've used all the best chemo that has worked with people, especially at a later stage like hers. It makes me feel that is it okay to just give up??? What if things turned around? But would her pain even becomes less?
I know it's not up to me but up to my mom. But I guess I've been influenced by the media as well, like mentioned in the previous post, that cancer is a battle that needs to be won and giving up has a bad feel to it.
I don't want to influence her decision. I feel really terrible for her because her quality of life is not good at all. Actually I don't even know how to deal with all this.
I also have to take her to the ER several times per month because the pain isn't manageable, she's very anemic, or have some other issues since the diagnosis. She goes to the General Hospital because she was unemployed and had no insurance when she was diagnosed. Now she's in medicare.
I don't really know how to respond to this when the doctor mentioned it as an option. They said they've used all the best chemo that has worked with people, especially at a later stage like hers. It makes me feel that is it okay to just give up??? What if things turned around? But would her pain even becomes less?
I know it's not up to me but up to my mom. But I guess I've been influenced by the media as well, like mentioned in the previous post, that cancer is a battle that needs to be won and giving up has a bad feel to it.
I don't want to influence her decision. I feel really terrible for her because her quality of life is not good at all. Actually I don't even know how to deal with all this.
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Eileen - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Last year
- Age at diagnosis: 56
Re: Giving up & stopping treatment
Well, I can understand where she's coming from, I've had 3 years in which I felt pretty good after recovering from a stem cell transplant. I'm now receiving treatment for a relapse and a fracture and taking Revlimid 15mg on a 28 day cycle and 3mg of Zometa monthly.
My side effects are numerous and have really cut into my quality of life. I could see myself questioning the sense of it if my overall well being doesn't improve. I'm hoping that there is some adjustments to be had and that things will improve.
Note that I'm not taking a steroid.
My side effects are numerous and have really cut into my quality of life. I could see myself questioning the sense of it if my overall well being doesn't improve. I'm hoping that there is some adjustments to be had and that things will improve.
Note that I'm not taking a steroid.
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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: Giving up & stopping treatment
I too, contemplate the cease of treatment and the non- taking of the band of tablets. On trying this for a week, gout struck, bone pain tripled, and the general ill feeling that struck reminded me of the fact that I am very unwell.
While told I'm in remission by the specialist, I continue to "paddle along" with retirement at age 55 and the constant trials of cutting certain drugs like Revlimid from my daily cycle.
What would a month or 2 be like after 4 years of daily dosage?
What could possible happen that can't be stopped by quick resumption of the routine?
Reading of growing survival periods, I hope I'm in the group trending to longer term survival, but the idea of stopping treatment hovers over me every day.
While told I'm in remission by the specialist, I continue to "paddle along" with retirement at age 55 and the constant trials of cutting certain drugs like Revlimid from my daily cycle.
What would a month or 2 be like after 4 years of daily dosage?
What could possible happen that can't be stopped by quick resumption of the routine?
Reading of growing survival periods, I hope I'm in the group trending to longer term survival, but the idea of stopping treatment hovers over me every day.
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Alex
Re: Giving up & stopping treatment
My Husband was diagnosed 8/09 - He had an AutoSCT 10/2010 - and had about 18 mos of maintenance treatment. He has had EVERY possible chemo combo that is available, radiation when needed. He even went thru 4 rounds of "salvage" treatment - DCEP.
We were told 2 days ago that he has exhausted all treatment options, the PET scan showed high activity. The cancer "has progressed" his cancer is a clone - it can adapt, adjust, and avoid everything. He actually was admitted to the hospital the same day we got "THE" talk - because he was so orthostatic - he about fainted.
I just brought him home - he had liters of fluids, 2 units of blood, and platelets. As he seems to need something @every 4 days. It's almost a relief not to have to face another chemo cocktail and all the side effects - almost.
Neither of us have ever used the term "giving up" instead - we have said, " it's the end of the road" or something similar. What else can we do? He will now be getting "supportive" care instead of treatment - still getting labs 2x a week and transfusion, if needed, as long as he can handle it or wants.
We don't really know what to expect from this stage - hopefully, it won't be as exhausting as others. Guess we are getting ready for the HomeStretch and hope to drag it out as long as possible.
We were told 2 days ago that he has exhausted all treatment options, the PET scan showed high activity. The cancer "has progressed" his cancer is a clone - it can adapt, adjust, and avoid everything. He actually was admitted to the hospital the same day we got "THE" talk - because he was so orthostatic - he about fainted.
I just brought him home - he had liters of fluids, 2 units of blood, and platelets. As he seems to need something @every 4 days. It's almost a relief not to have to face another chemo cocktail and all the side effects - almost.
Neither of us have ever used the term "giving up" instead - we have said, " it's the end of the road" or something similar. What else can we do? He will now be getting "supportive" care instead of treatment - still getting labs 2x a week and transfusion, if needed, as long as he can handle it or wants.
We don't really know what to expect from this stage - hopefully, it won't be as exhausting as others. Guess we are getting ready for the HomeStretch and hope to drag it out as long as possible.
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larklodge
32 posts
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