My smoldering multiple myeloma has been monitored for a couple of years. I recently learned that I have become anemic with a PTH reading of 122, hemoglobin at 11.2, and RBC of 3.58 m/ul. I'm IGG 2080 at the last test. Skeletal x-rays detect bone dysplasia and degenerative changes (I'm 61) but no lytic lesions. Still, the anemia has triggered the inevitable concern that I will soon enter a new phase with chemo on the horizon not to mention other treatments and the prospects of a long decline.
While reading many of the postings here, I see so many people waging the good fight. I admire you for it. But to be honest, the way I feel right now, I'm not sure I want to go through all that. Have any of you taken a different route, perhaps with only palliative care, with a focus less on longevity but more on the quality of life? I've not seen a forum or really any random postings by people who are choosing a different route. Anyone?
Sorry if this posting seems like a big downer. I suppose I'm still trying to come to terms with multiple myeloma.
Arthurg
Forums
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Arthurg - Who do you know with myeloma?: That would be me.
- When were you/they diagnosed?: October 2010
- Age at diagnosis: 60
Re: A good fight? Or not?
Dear Arthurg
I think you need to get into treatment some time soon, you are getting anemic and it will be no time those bad plasma cells are going to start to eat your bones (you did not mention your M-spike). I am in carfilzomib study at NIH, and got into CR after 5-6 cycles. I highly recommend joining Dr Landgren's MGUS/SMM History study at NIH and when the time comes move into treatment. Good luck, no reason to loose hope. And I am about your age. Forget palliative care, novel drugs will do wonders and you will have many more years of good life and quality life.
Smah
I think you need to get into treatment some time soon, you are getting anemic and it will be no time those bad plasma cells are going to start to eat your bones (you did not mention your M-spike). I am in carfilzomib study at NIH, and got into CR after 5-6 cycles. I highly recommend joining Dr Landgren's MGUS/SMM History study at NIH and when the time comes move into treatment. Good luck, no reason to loose hope. And I am about your age. Forget palliative care, novel drugs will do wonders and you will have many more years of good life and quality life.
Smah
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Smah - Name: Smah
- Who do you know with myeloma?: Myself ; smm; multiple myeloma
- When were you/they diagnosed?: January 2010; September 2011
- Age at diagnosis: 58
Re: A good fight? Or not?
Hi Arthurg, sorry to hear about your situation but I concur with Smah. It seems you have CRAB symptoms thereby prompting treatment, i.e. anemia and bone problems. See an multiple myeloma specialist ASAP. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: A good fight? Or not?
I appreciate the thoughtful comments from both of you. I am normally more upbeat. I just need to work my way through this.
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Arthurg - Who do you know with myeloma?: That would be me.
- When were you/they diagnosed?: October 2010
- Age at diagnosis: 60
Re: A good fight? Or not?
Your are jumping the gun to jump into treatment if all you have is mild anemia that is not even 2 units below the normal range. Dr. Kyle -- the first oncologist to identify and study smoldering myeloma has identified numerous patients with stable Hb between 9 and 10 and a high M spike that can ward off treatment for a few years or more. There is also NO correlation that I know of between anemia and bone destruction. It all depends on your imaging and X-ray data and numbers.
Don't start taking poison unless you need to.
Don't start taking poison unless you need to.
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The real deal
Re: A good fight? Or not?
In other words -- as you suggest -- you need to find out whether your bone profile is simply normal-age related or something else....a CT scan might address that; your oncologist would know...
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The real deal
Re: A good fight? Or not?
Dear Real deal
I am suggesting the MGUS/SMM history study to start with, maybe Arthurg is one of the lucky ones who never progress, and medical research will learn something. Time will tell. And if he progresses there are superior treatments available to bring many more years of quality life.
SMAH
I am suggesting the MGUS/SMM history study to start with, maybe Arthurg is one of the lucky ones who never progress, and medical research will learn something. Time will tell. And if he progresses there are superior treatments available to bring many more years of quality life.
SMAH
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Smah - Name: Smah
- Who do you know with myeloma?: Myself ; smm; multiple myeloma
- When were you/they diagnosed?: January 2010; September 2011
- Age at diagnosis: 58
Re: A good fight? Or not?
Yep! Some days are just hard to bear with the upbeat stuff and you can do it cheer leading. I hear what you feel with the treatment plan and problems with handling the idea of a process. It ain't easy and I go thru the ebb and flow of is it worth it. Especially when I hear of hidden agendas with pills and trials.
Hang in there, they,ll say god wanted it but there's more to it than that......family, the dog, tomorrow's bacon and eggs
Hang in there, they,ll say god wanted it but there's more to it than that......family, the dog, tomorrow's bacon and eggs
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Alan
Re: A good fight? Or not?
Hi Arthurg, like Smah, I am also monitored and will soon be treated at the NIH. I literally just progressed due to a pulmonary embolism two weeks ago and a plummeting hemoglobin. I am a 50 year old guy and it went from 12.0 to now 9.8 in 6 weeks. My FLC's have exploded. I will start the carfilzomib trial this week. I would call Dr. Landgren's office at the NIH/NCI. They can do a work up for you and give you a second opinion. It is free and people from all 50 states go to the NIH. Dr. Landgren is one of the leading myeloma experts in the world and is featured in the Beacon occasionally---check out his recent interview in the Beacon about SMM, etc. At the NIH, 2 units below normal hemoglobin is 11.7. You are now at 11.2. It was explained to me that anemia is the "softest" of the CRAB criteria but you should definitely closely watch it. I would imagine you also need a PET CT or PET/MRI since a radiographic skeletal survey only picks up problems (lytic lesions) if there is 30% or more of bone degradation....i.e. my recent survey was normal but my PET CT shows an abnormal marrow uptake signal. I smoldered for 8 months and had time to educate myself and prepare myself for the inevitable. It really, really stinks (height of my career, wife, two young kids, Leave It To Beaver lifestyle, etc), but you really have good options and there is every reason to believe that you are going to be fine for years and years. Call the NIH and try to set up an appointment. Good luck! Terry from NJ
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: A good fight? Or not?
Dear Alan
I am compelled to post one further comment as a response to you. I have no hidden agendas for big pharma, they make a lot of money without me promoting them. When I progressed with bone disease, I simply wanted the best drug on the market, available only in clinical trials. My desire is to live almost a normal life, as many years as it may mount to, to be able to walk a couple of miles without pain and without a limp (lesion in my hip bone, along many other lesions that sneaked upon me). For almost one and half years right up until progression I had tried in vain also the natural or quack (depending on your viewpoint) medicine route (8g curcumin/day, fish oil pills, reishi mushroom pills, etc) and those quack med companies made a mighty profit on my expense. Happy to send you the leftover curcumin from my cupboard, worth at least $150, if not more.
My point is that I have been there desperately trying to stop progression of my disease, all in vain, by ‘natural’ meds, so if big pharma can help me now, so be it.
All the best to you
SMAH
I am compelled to post one further comment as a response to you. I have no hidden agendas for big pharma, they make a lot of money without me promoting them. When I progressed with bone disease, I simply wanted the best drug on the market, available only in clinical trials. My desire is to live almost a normal life, as many years as it may mount to, to be able to walk a couple of miles without pain and without a limp (lesion in my hip bone, along many other lesions that sneaked upon me). For almost one and half years right up until progression I had tried in vain also the natural or quack (depending on your viewpoint) medicine route (8g curcumin/day, fish oil pills, reishi mushroom pills, etc) and those quack med companies made a mighty profit on my expense. Happy to send you the leftover curcumin from my cupboard, worth at least $150, if not more.
My point is that I have been there desperately trying to stop progression of my disease, all in vain, by ‘natural’ meds, so if big pharma can help me now, so be it.
All the best to you
SMAH
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Smah - Name: Smah
- Who do you know with myeloma?: Myself ; smm; multiple myeloma
- When were you/they diagnosed?: January 2010; September 2011
- Age at diagnosis: 58
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