Just beginning my second cycle of Revlimid, dexamethasone, Zometa at the VA hospital. My healthcare over the years has been great through the VA, but I was very healthy previous to multiple myeloma diagnosis.
Are there any other VA patients here?
Like to hear other VA experiences / treatment given and compensation stories.
My myeloma was caught by a nurse practitioner while treating for suspected pneumonia and confirmed by the hematology oncologist by bone marrow biopsy and blood tests. I drive 82 miles to Buffalo NY monthly for Zometa infusion and meet with the doc. So far so good. I feel better since treatment started, usual Dex trips and no issues with the Zometa or Revlimid. Hydrocodon for back pain when needed. My VA care prior to this was basically well care visits at the Canandaigua NY VA, but this is a whole different thing. The doc , nurses, techs , etc have all been great, professional, so far a good experience. Time will tell how good!!
Anyhow, love to hear from any other vets in the same boat.
Vietnam 69-70 4th Inf Div.
Forums
10 posts
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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: Agent Orange, Multiple Myeloma, and the VA
Hi, Wayne--
First and most importantly, thanks for your service!
My hubby was diagnosed six years ago. He is a Marine vet, didn't serve in Vietnam, but served on an aircraft carrier. Who knows what he was exposed to, but since it wasn't agent orange, he is not considered service-connected. He did get a modest pension from the VA.
The best thing the VA has done for him, and it is a huge and wonderful blessing, is the fantastic care and treatments he has received at the James A. Haley VA Hospital in Tampa, FL. He had tried to get into the VA system before he became ill, but he was low priority. As soon as he received a diagnosis of multiple myeloma, they rolled out the red carpet for him, and we have been blown away by the excellence in medical care he has received. He has had two autologous stem cell transplants (they sent him to Nashville for those) and several chemo regimens, including a recent long stint with Revlimid/Velcade/dexamethasone.
Hubby's myeloma is very aggressive, and the VA has not missed a beat in staying on top of his situation at all times. We couldn't ask for more. Another positive in getting treated at the VA is the respect given to the vets. It is touching and so well-deserved.
First and most importantly, thanks for your service!
My hubby was diagnosed six years ago. He is a Marine vet, didn't serve in Vietnam, but served on an aircraft carrier. Who knows what he was exposed to, but since it wasn't agent orange, he is not considered service-connected. He did get a modest pension from the VA.
The best thing the VA has done for him, and it is a huge and wonderful blessing, is the fantastic care and treatments he has received at the James A. Haley VA Hospital in Tampa, FL. He had tried to get into the VA system before he became ill, but he was low priority. As soon as he received a diagnosis of multiple myeloma, they rolled out the red carpet for him, and we have been blown away by the excellence in medical care he has received. He has had two autologous stem cell transplants (they sent him to Nashville for those) and several chemo regimens, including a recent long stint with Revlimid/Velcade/dexamethasone.
Hubby's myeloma is very aggressive, and the VA has not missed a beat in staying on top of his situation at all times. We couldn't ask for more. Another positive in getting treated at the VA is the respect given to the vets. It is touching and so well-deserved.
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Denise H
Re: Agent Orange, Multiple Myeloma, and the VA
Good to hear your guy is being taken care of. I've heard "stories" that VA quality of care varies throughout the system. Currently, I am treated at the VA hospital in Buffalo NY. Very pleased with their care. Just wish they weren't 80 miles away! My multiple myeloma was found by a nurse practitioner while doing tests for suspected pneumonia at the near by Canandaigua NY VA hospital.
Sounds like Nashville is where I would be sent for a transplant also.
I was in the system for many years, as I received a 20% disability for malaria in 1970. Just another souvenir from Vietnam! The multiple myeloma will become 100%.
My co pay for a month's Revlimid is 8 bucks! Once the 100% kicks in, I think the co pay drops to zero. Either way, I am so thankful.
It would be interesting to know what chemicals your husband was exposed to. Some cleaning solvents and the like contain some nasty stuff. I never saw a material safety data sheet in the Army! If he could point to a specific chemical, lubricant that was / is a carcinogen, it might help build a case for full disability.
Have you talked with a Veterans Service Officer? If not, there's no charge and they may help.
Are you in the Tampa Area? I moved from NW Bradenton 10 years ago and now I'll be driving to Buffalo monthly in the snow!!
Today's my dex day so it's Netflix all night.
Sounds like Nashville is where I would be sent for a transplant also.
I was in the system for many years, as I received a 20% disability for malaria in 1970. Just another souvenir from Vietnam! The multiple myeloma will become 100%.
My co pay for a month's Revlimid is 8 bucks! Once the 100% kicks in, I think the co pay drops to zero. Either way, I am so thankful.
It would be interesting to know what chemicals your husband was exposed to. Some cleaning solvents and the like contain some nasty stuff. I never saw a material safety data sheet in the Army! If he could point to a specific chemical, lubricant that was / is a carcinogen, it might help build a case for full disability.
Have you talked with a Veterans Service Officer? If not, there's no charge and they may help.
Are you in the Tampa Area? I moved from NW Bradenton 10 years ago and now I'll be driving to Buffalo monthly in the snow!!
Today's my dex day so it's Netflix all night.
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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: Agent Orange, Multiple Myeloma, and the VA
Greeting to all of you. And welcome home.
I served in Nam in 1964 until August 1965 and never thought much about Agent Orange until 1999, when I was told I had prostate cancer. I had been unable to work for the last three years and had a claim with the Social Security disability office and the judge just happened to be a Vietnam vet. He asked where I was in Nam and I told him and he said to get my butt down to the VA. I did, and I was awarded 20%.
My condition after surgery never improved and the incontinence was at 100% a year later, so they upped my rating to 40%. I had a few somewhat normal years of health and in 2012 was told I need open heart surgery. I did that and the coronary heart disease is Agent Orange related so I sent in a fast track claim in March of 2013.
Then in July my neck cramped up and I could not turn my head and in September of 2013 my back started hurting and by mid October I had to use a walker to walk and spent most of my time in bed. After more visits to doctors than I care to remember and more pain than any person should endure, I was admitted to the hospital the week before Christmas. After many MRI, and CAT scans etc, they did a bone biopsy and then a bone marrow biopsy and found I now have multiple myeloma stage 3. This is also connected to Agent Orange exposure.
I just had my third chemo treatment today and most of the pain is gone when I am not moving and then it's only about 30% of what it was. I would rate the pain at 3 and three weeks ago it was 8 and when I tried to get out of bed it was a 9 or 10.
We are running out of guys from our service days and yet I don't see much being done for us. I do not use the VA for care, only for drugs. I am on Medicare, so it's all paid by the same people. The taxpayers. God bless all of you guys and gals.
Rich
I served in Nam in 1964 until August 1965 and never thought much about Agent Orange until 1999, when I was told I had prostate cancer. I had been unable to work for the last three years and had a claim with the Social Security disability office and the judge just happened to be a Vietnam vet. He asked where I was in Nam and I told him and he said to get my butt down to the VA. I did, and I was awarded 20%.
My condition after surgery never improved and the incontinence was at 100% a year later, so they upped my rating to 40%. I had a few somewhat normal years of health and in 2012 was told I need open heart surgery. I did that and the coronary heart disease is Agent Orange related so I sent in a fast track claim in March of 2013.
Then in July my neck cramped up and I could not turn my head and in September of 2013 my back started hurting and by mid October I had to use a walker to walk and spent most of my time in bed. After more visits to doctors than I care to remember and more pain than any person should endure, I was admitted to the hospital the week before Christmas. After many MRI, and CAT scans etc, they did a bone biopsy and then a bone marrow biopsy and found I now have multiple myeloma stage 3. This is also connected to Agent Orange exposure.
I just had my third chemo treatment today and most of the pain is gone when I am not moving and then it's only about 30% of what it was. I would rate the pain at 3 and three weeks ago it was 8 and when I tried to get out of bed it was a 9 or 10.
We are running out of guys from our service days and yet I don't see much being done for us. I do not use the VA for care, only for drugs. I am on Medicare, so it's all paid by the same people. The taxpayers. God bless all of you guys and gals.
Rich
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Rich
Re: Agent Orange, Multiple Myeloma, and the VA
This may be of help to you guys ...
http://covvha.net/information-for-the-vietnam-veteran/
Welcome Home!
http://covvha.net/information-for-the-vietnam-veteran/
Welcome Home!
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Nanette - Name: Nanette "Deaux"
- Who do you know with myeloma?: My dear husband, Dominic
- When were you/they diagnosed?: Spring of 2008
- Age at diagnosis: 62
Re: Agent Orange, Multiple Myeloma, and the VA
My husband is also on his second cycle of chemo. He is on Velcade, dexamethasone and cyclophosphamide (VCD, CyBorD).
His diagnosis was discovered through diligent observation of lab results by his nephrologist at the Orlando VA. A follow-up with the hematology/oncologist and a bone marrow test confirmed the diagnosis. Phil had his right kidney with a malignant tumor removed in September 2013. A bone marrow transplant is in the talking stages at Nashville next March.
He is on the Agent Orange registry and is being compensated for diabetes and hearing loss. He is appealing a decision for PTSD and is awaiting a decision on the kidney cancer (not on the presumed AO list). A claim has been filed for the multiple myeloma.
He was diagnosed with smoldering myeloma in September of 2014. When the labs took a leap, the chemo began. He has had no adverse effects of the chemo but is also up and down all night. His appetite is also huge and he has hiccups after 24 - 48 hours.
Medical care at the Orlando VA has been excellent. His nurse practitioner is knowledgeable, diligent, caring, and professional. The nursing staff are super! He has never had to "wait" for care. Now if he could say the same for the compensation offices. He is patiently "waiting".
His diagnosis was discovered through diligent observation of lab results by his nephrologist at the Orlando VA. A follow-up with the hematology/oncologist and a bone marrow test confirmed the diagnosis. Phil had his right kidney with a malignant tumor removed in September 2013. A bone marrow transplant is in the talking stages at Nashville next March.
He is on the Agent Orange registry and is being compensated for diabetes and hearing loss. He is appealing a decision for PTSD and is awaiting a decision on the kidney cancer (not on the presumed AO list). A claim has been filed for the multiple myeloma.
He was diagnosed with smoldering myeloma in September of 2014. When the labs took a leap, the chemo began. He has had no adverse effects of the chemo but is also up and down all night. His appetite is also huge and he has hiccups after 24 - 48 hours.
Medical care at the Orlando VA has been excellent. His nurse practitioner is knowledgeable, diligent, caring, and professional. The nursing staff are super! He has never had to "wait" for care. Now if he could say the same for the compensation offices. He is patiently "waiting".
Re: Agent Orange, Multiple Myeloma, and the VA
I hope all our vets, particularly Marine Corps vets and families, are aware there were also base housing water contamination issues from 1953 to 1987. This was at Camp Lejeune in North Carolina. Multiple myeloma is one of the possible diseases caused by this exposure. Googling Camp Lejeune water will take you to links on this. And there is actually a list of 15 illnesses linked to this water exposure.
Re: Agent Orange, Multiple Myeloma, and the VA
My husband was diagnosed January 2015, did radiation for tumors on spine as he could barely walk. Took a lot of time to find the right doctor to find what was wrong 
He had lost a lot of weight was very ill. After radiation same day started Velcade with dex.
I am wondering how the VA takes care of this. My husband was a vital healthy on-the-go man until this but he can no longer hold onto his job. How do you pay for meds, doctors, insurance?
My understanding is the VA does not recognize this as a 100% disability, yet it is not curable. Can anyone explain?
Thank you for any help. So frustrating and draining.
He had lost a lot of weight was very ill. After radiation same day started Velcade with dex. I am wondering how the VA takes care of this. My husband was a vital healthy on-the-go man until this but he can no longer hold onto his job. How do you pay for meds, doctors, insurance?
My understanding is the VA does not recognize this as a 100% disability, yet it is not curable. Can anyone explain?
Thank you for any help. So frustrating and draining.
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nanaofbkma - Name: Deb
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 65
Re: Agent Orange, Multiple Myeloma, and the VA
Hi nanaofbkma,
As soon as possible I would have your husband call the VA and tell them over the phone that he wants to file a claim for herbicide exposure, i.e., multiple myeloma from Agent Orange exposure. This is a "presumptive" medical disease already determined to be a cause of Agent Orange disability. Therefore it excuses the claimant from bearing the burden of proof that the myeloma was caused by Agent Orange. This phone call is important because it will establish the date of your claim which will be the start date of your financial compensation.
I was diagnosed March 2007. I have been receiving monthly compensation since then at the 100% rate. I also received back pay for the time between the phone call to VA and approval of my disability claim.
I use my private insurance but you can be medically treated by the VA. They have fine medical care. And your costs are all covered based on assets or income or both. Can't recall.
Then I suggest you find a VSA, or Veterans Service Officer. That person will assist you with completing your VA application. When your are approved, you will start receiving monthly compensation as well as a check retroactive to the date your husband started his claim over the telephone. All VA benefits are tax free.
The VSA has been trained in the process of assisting fellow veterans in navigating the maze to application submission to VA. My county government has one and almost all organizations like Vietnam Veterans of America, VFW, Disabled American Veterans have one or can direct you to one. There is no fee. I am an attorney so I was able to complete and submit my application.
Good luck and feel free to post any questions or pm me. See va.gov for help. Very good site.
I know there are other veterans on this site that are very knowledgeable on this subject and would jump at the opportunity to help a fellow veteran.
Also, please tell your husband "welcome home, brother," for me. Thx.
Tom in Michigan
As soon as possible I would have your husband call the VA and tell them over the phone that he wants to file a claim for herbicide exposure, i.e., multiple myeloma from Agent Orange exposure. This is a "presumptive" medical disease already determined to be a cause of Agent Orange disability. Therefore it excuses the claimant from bearing the burden of proof that the myeloma was caused by Agent Orange. This phone call is important because it will establish the date of your claim which will be the start date of your financial compensation.
I was diagnosed March 2007. I have been receiving monthly compensation since then at the 100% rate. I also received back pay for the time between the phone call to VA and approval of my disability claim.
I use my private insurance but you can be medically treated by the VA. They have fine medical care. And your costs are all covered based on assets or income or both. Can't recall.
Then I suggest you find a VSA, or Veterans Service Officer. That person will assist you with completing your VA application. When your are approved, you will start receiving monthly compensation as well as a check retroactive to the date your husband started his claim over the telephone. All VA benefits are tax free.
The VSA has been trained in the process of assisting fellow veterans in navigating the maze to application submission to VA. My county government has one and almost all organizations like Vietnam Veterans of America, VFW, Disabled American Veterans have one or can direct you to one. There is no fee. I am an attorney so I was able to complete and submit my application.
Good luck and feel free to post any questions or pm me. See va.gov for help. Very good site.
I know there are other veterans on this site that are very knowledgeable on this subject and would jump at the opportunity to help a fellow veteran.
Also, please tell your husband "welcome home, brother," for me. Thx.
Tom in Michigan
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Tom in Mixhigan
Re: Agent Orange, Multiple Myeloma, and the VA
Hi Tom in Michigan,
Thank you for your service and all who served. Let me clarify a couple of things as this all becomes a little overwhelming. Thank you so much for all your advice, we have applied and received 100%, but husband did treatment for 11 months then transplant.
We were just told by a VSO that this could be taken or lowered to little of nothing. As low as 10% . My husband is going to have to give up a job he has thrived at. This has changed our lives, he has to remain on meds. How do we stop them from doing this?
Any advice I would appreciate. Thank you to all a anyone.
God bless
Thank you for your service and all who served. Let me clarify a couple of things as this all becomes a little overwhelming. Thank you so much for all your advice, we have applied and received 100%, but husband did treatment for 11 months then transplant.
We were just told by a VSO that this could be taken or lowered to little of nothing. As low as 10% . My husband is going to have to give up a job he has thrived at. This has changed our lives, he has to remain on meds. How do we stop them from doing this?
Any advice I would appreciate. Thank you to all a anyone.
God bless
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nanaofbkma - Name: Deb
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 65
10 posts
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