Hi All,
I've been posting about my father who was diagnosed with multiple myeloma recently. They did a bone PET scan on him, and it indicates there are thousands of spots in every bone in his body. Instead of the normal 4 rounds of chemo, they are doing 2 and then sending him for stem cell transplant.
The doctor is being very vague about his prognosis. What are the odds of going into remission when it is everywhere? And I assume they are only doing 2 rounds of chemo because they don't think he can last for 4 rounds. Am I wrong?
They also think his myeloma is likely the result of exposure to Agent Orange in Vietnam. I wish they would bring some awareness about having vets checked for this. He has been going to the doctor for 2 years thinking he had cancer and it has taken this long to find it and now it is everywhere.
Thanks in advance for any input.
Forums
8 posts
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Re: My father's myeloma diagnosis and prognosis?
Hey Florida Girl,
I'll let others that have been down this road comment on the chemo and prognosis questions. But in case you weren't aware of it, I want to make sure you know that VA benefits cover myeloma due to agent orange. There are some vets on this site that might be able to comment further.
I'll let others that have been down this road comment on the chemo and prognosis questions. But in case you weren't aware of it, I want to make sure you know that VA benefits cover myeloma due to agent orange. There are some vets on this site that might be able to comment further.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My father's myeloma diagnosis and prognosis?
Multiple myeloma is one of several illnesses presumed caused by Agent Orange exposure. Your father only needs to prove that he set foot in Vietnam, even if for only a day.
Contact a VSO to file a claim with the VA. Agent orange claims are supposed to be "fast tracked", 90 days to approval. I'm 60 days and waiting; nice having the VA pay for the 10k $ Revlimid each month.
Has your father been seen by the VA in the past? The VA actually caught my multiple myeloma pretty quickly when I had pneumonia symptoms. Wish it was pneumonia!
Contact a VSO to file a claim with the VA. Agent orange claims are supposed to be "fast tracked", 90 days to approval. I'm 60 days and waiting; nice having the VA pay for the 10k $ Revlimid each month.
Has your father been seen by the VA in the past? The VA actually caught my multiple myeloma pretty quickly when I had pneumonia symptoms. Wish it was pneumonia!
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Waldopepper - Name: Wayne m
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: My father's myeloma diagnosis and prognosis?
Bone lesions are just one of the fallouts of this awful disease. The fact that he is able to qualify for a stem cell transplant means a lot. Some people do not make it there due to lack of response to treatment. The bone can heal itself but it will take time.
The true test of how multiple myeloma has affected the body is a bone marrow biopsy, which will tell you how many plasma cells have been affected and set the baseline so they can measure how he responds to treatment.
Don't freak out over the bone lesions.
The true test of how multiple myeloma has affected the body is a bone marrow biopsy, which will tell you how many plasma cells have been affected and set the baseline so they can measure how he responds to treatment.
Don't freak out over the bone lesions.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: My father's myeloma diagnosis and prognosis?
I also am a vet with multiple myeloma; got it from Agent Orange. I have been using my wife's insurance, because I don't trust VA doctors. I will be going on Medicare, and Revlimid isn't cheap. How do you go about getting VA to pay?
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WV Vet
Re: My father's myeloma diagnosis and prognosis?
WV Vet,
Looks like Rich did what you are hoping to do with Medicare coverage for care and then VA coverage of drugs:
https://myelomabeacon.org/forum/post14569.html#p14569
Looks like Rich did what you are hoping to do with Medicare coverage for care and then VA coverage of drugs:
https://myelomabeacon.org/forum/post14569.html#p14569
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My father's myeloma diagnosis and prognosis?
Hi WV Vet,
I only just noticed your post as I was logging on to look up something else. I wish the board would notify of new posts. I'm very sorry to hear of your diagnosis.
To answer your question, my father had Medicare, so he did not go through the VA. However, this would be covered by the VA since you are a veteran, but only if you go to them for initial and all treatment. At least that is my understanding.
Have you filed a claim with the VA for this? They will not reimburse medical expenses, co-pays etc., if not treated through the VA, but they do offer a pension to those with this cancer who are Vietnam veterans.
Best of luck, keep us posted.
I only just noticed your post as I was logging on to look up something else. I wish the board would notify of new posts. I'm very sorry to hear of your diagnosis.
To answer your question, my father had Medicare, so he did not go through the VA. However, this would be covered by the VA since you are a veteran, but only if you go to them for initial and all treatment. At least that is my understanding.
Have you filed a claim with the VA for this? They will not reimburse medical expenses, co-pays etc., if not treated through the VA, but they do offer a pension to those with this cancer who are Vietnam veterans.
Best of luck, keep us posted.
Re: My father's myeloma diagnosis and prognosis?
My husband was diagnosed with MGUS in 2002; he has had smoldering myeloma since 2010, caused by Agent Orange.
He receives treatment at a VA Hospital and 2x a year at UAMS Hospital MIRT in Arkansas. He uses Medicare and secondary Insurance for UAMS. The VA said they will follow UAMS' advice on treatment.
You need to go to a VA Hospital for an Agent Orange checkup; take any / all documents to prove you had "Boots on the Ground" in Vietnam. DD214 too.
He receives treatment at a VA Hospital and 2x a year at UAMS Hospital MIRT in Arkansas. He uses Medicare and secondary Insurance for UAMS. The VA said they will follow UAMS' advice on treatment.
You need to go to a VA Hospital for an Agent Orange checkup; take any / all documents to prove you had "Boots on the Ground" in Vietnam. DD214 too.
8 posts
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