Hi all, my problems started about 8 years ago when I was given Nephrogenic Systemic Fibrosis, after having a thoracic aortic aneurysm that dissected. While putting in the gore tag, they managed to collapse my renal arteries, which led to them giving me an MRI to see why my kidneys had shut down. Because i was in renal failure, I was unable to flush the gadolinium dye out of my system, and this led to the above disease NSF/NFD, and to this day i think that this is what caused my contracting multiple myeloma 2 and a half years ago.
And, thanks to the VA, I am receiving no treatment for either of these diseases, and the only reason my multiple myeloma is still in the smoldering stage is that a couple of years ago I saw a report about how hemp oil was causing all types of cancer to self destruct, including different types of blood cancers. So, since then, I have been smoking any and all types of marijuana in the hope that it will slow it down till I can get some treatment.
You know what's really sad about this story is I still don't have a diagnosis for my NSF/NFD after 8 years, and about 6 months ago my doctor at the VA told me when I finally cornered him about getting a simple punch biopsy test, that he didn't give me one because he thought that the only reason I wanted the diagnosis was so I could sue the hospital that gave me the disease.
And like a good little Republican he forgot that G.W. Bush changed the time limit to sue for malpractice, from 7 years down to 2 years, about 10 years ago. When he told me that, I almost hit him with my cane, and I told him about the statute of limitations being only 2 years and asked him, So I guess treatment is out of the question then? All he did was turn around and walked off in a huff and said he refused to treat me any more. So I told him fine, I will ask for another doctor, and they gave me back the one I had before he became my doctor and still I get no treatment!
So now I think they may have lied to me about what stage I am in because my breast plate's little triangular point on the bottom just above the sternum is deforming. Now, instead of pointing down, it has turned up and to the right, and I can look down and see it trying to poke out of my sternum. And there is now a groove that runs from below my right breast diagonally across to 3/4 of the breast plate, angling up to above my left breast.
I am in severe pain all the time and fight muscle spasms that are so bad they tear the muscles in my back. 2 weeks ago, I had to spend a week in the VA hospital in Danville, IL because I had some bad muscle spasms that tore the muscle off of a vertebrae and pushed a disc against the spinal cord, causing pain so bad I was praying to die.
I have decided that, if I want to live, I need to find a doctor that is using hemp oil or some form of cannabis in the treatment, so I am looking to move to Oregon or California or to some medical marijuana state besides Illinois, because Illinois medical marijuana law is a joke.
Illinois doesn't really want to help patients, they only want the appearance of helping, because this way they can appease some of the medical patients by only providing marijuana cigarettes and hemp oil for kids with epilepsy. This is their way to make it look like they are moving forward when in reality they are doing this to only to make as much money off the sick as they can and still make it look like they actually care. I can tell you exactly how much they care, if your a-s was on fire they wouldn't piss on you to put it out! That's how much they care!.
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tank20101955 - Name: David L. Brandenburg
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: jan 2012
- Age at diagnosis: 57
Re: 2 1/2 years with multiple myeloma and still no treatment
It sounds like you've been through so much. I hope you are able to get your care sorted out so that you can begin feeling better and get better treatment.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: 2 1/2 years with multiple myeloma and still no treatment
David,
You sound like you're more interested in smoking hemp and marijuana than seeking a multiple myeloma professional to help you with your situation. Why are you waiting all this time to get treated? If you're not happy with one doctor, seek out another. If you're not getting proper treatment or none at all, seek out a health professional to guide you. There are many resources for treatment of multiple myeloma, just Google it. Good luck
You sound like you're more interested in smoking hemp and marijuana than seeking a multiple myeloma professional to help you with your situation. Why are you waiting all this time to get treated? If you're not happy with one doctor, seek out another. If you're not getting proper treatment or none at all, seek out a health professional to guide you. There are many resources for treatment of multiple myeloma, just Google it. Good luck
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Larryg6
Re: 2 1/2 years with multiple myeloma and still no treatment
David,
From what you have said, I think you may want to consider the possibility that the hemp oil is doing nothing for your myeloma.
From what you have said, I think you may want to consider the possibility that the hemp oil is doing nothing for your myeloma.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: 2 1/2 years with multiple myeloma and still no treatment
David,
Wow, you are having some major difficulties, and I hope you will quickly get appropriate treatment.
I would not be surprised if marijuana has anti-cancer properties and it might have been helpful up to now in keeping your myeloma from progressing. But myeloma is a serious disease and it needs serious treatment using proven agents. Fortunately there are now very effective drugs and you should be receiving some of them. Even if marijuana works, it is unlikely to be enough.
It's not certain that all of the symptoms you describe are due to myeloma, but it is beyond belief that your doctors are not making an aggressive attempt to help you. The VA is a big bureaucracy and it appears that getting appropriate treatment there may be difficult. Do you have any other options? Do you qualify for Medicare, for example?
For help with selecting the best myeloma treatment, it is valuable to consult with a doctor who is a myeloma specialist. You can get a written second opinion from such a doctor to take to your treating physician. If you don't have insurance to cover such a thing, you may have to pay for it yourself, but that might be worth doing.
Best wishes,
Larry
Wow, you are having some major difficulties, and I hope you will quickly get appropriate treatment.
I would not be surprised if marijuana has anti-cancer properties and it might have been helpful up to now in keeping your myeloma from progressing. But myeloma is a serious disease and it needs serious treatment using proven agents. Fortunately there are now very effective drugs and you should be receiving some of them. Even if marijuana works, it is unlikely to be enough.
It's not certain that all of the symptoms you describe are due to myeloma, but it is beyond belief that your doctors are not making an aggressive attempt to help you. The VA is a big bureaucracy and it appears that getting appropriate treatment there may be difficult. Do you have any other options? Do you qualify for Medicare, for example?
For help with selecting the best myeloma treatment, it is valuable to consult with a doctor who is a myeloma specialist. You can get a written second opinion from such a doctor to take to your treating physician. If you don't have insurance to cover such a thing, you may have to pay for it yourself, but that might be worth doing.
Best wishes,
Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
Re: 2 1/2 years with multiple myeloma and still no treatment
I live in Alaska and the VA healthcare system here is superb. Go to the the VA Patient Advocate and let them help you with inconsiderate, unhelpful and disdainful doctors. It is the only way to get those dolts out of our system. Your VA Patient Advocate in Danville is Glenda Hackman Phone – (217) 554-3131 Location: Building 98, Room 3013.
The Seattle VA works in conjunction with Fred Hutchinson Cancer Research Center and the Seattle Cancer Care Alliance. I have been there twice now for stem cell transplants and received wonderful treatment, at no cost to me. In fact, they rented me a two bedroom apartment and gave me taxi vouchers for my time down there.
Multiple myeloma falls within the auspices of Agent Orange. It is known as a presumptive illness, and you start receiving VA disability benefits for it.
Don't give up in the VA! One more thing, we have a VA nurse oncologist that guides us through the entire process. Ours is an angel, her name is Karyn Overturf.
The Seattle VA works in conjunction with Fred Hutchinson Cancer Research Center and the Seattle Cancer Care Alliance. I have been there twice now for stem cell transplants and received wonderful treatment, at no cost to me. In fact, they rented me a two bedroom apartment and gave me taxi vouchers for my time down there.
Multiple myeloma falls within the auspices of Agent Orange. It is known as a presumptive illness, and you start receiving VA disability benefits for it.
Don't give up in the VA! One more thing, we have a VA nurse oncologist that guides us through the entire process. Ours is an angel, her name is Karyn Overturf.
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alaskanmeg - Name: alaskanmeg
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 15 June 12
- Age at diagnosis: 49
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