I have great concern for a friend (she’s in her late 50’s) who was recently diagnosed with MM. She had 3 discs in her back collapse at the time of diagnosis. Unfortunately, she’s not one to take care of herself so she may have had MM several years before diagnosis. If it hadn’t been for the debilitating back pain she would have never gone to the doctors. She went through 5 treatments of radiation and took Velcade during the radiation. She’s had three rounds of regular chemo infusions. She’s has also been getting bone strengthening infusions since diagnosis. And, she’s been on or is going on Revlimid. After three rounds of chemo she had a bone biopsy and was told her biopsy isn’t showing more than 5%. Here’s one of the problems; she has lived in a fantasy world of denial her entire life! I have a mutual friend who has reached out to help our friend (driving her to doc appts., taking notes for her in doc appts. Etc…), however she is being pushed away because of her truthfulness in reading the doctor’s notes back to her. Here’s a good example; our friend with MM heard the doctor say she was in remission after bone biopsy, however the truth, which our mutual friend heard and repeated back to our friend once she got her home was that the biopsy wasn’t showing more than 5% of cancer cells. The doc also shared about a possible stem cell transplant since her biopsy showed minimal cancer cells. Here’s the clincher, our friend thinks she’s now in remission so the stem cell is no longer necessary.
There’s two other things to consider; she also has poor functioning kidneys (she’s never been a water drinker) and she was turned down for the cement fusion in her spine, due to 10 fractures that were just discovered, along with the three collapsed discs. She has convinced herself that the doc refused to do the cement fusion because her bones are healing by themselves, crazy huh! Unfortunately, she lives alone in a two story house. The fact that she is living by herself in this two story house has me and our mutual friend concerned. Her diet is horrible, along with minimal water intake.
My question to you all is how do you help someone who isn’t facing the reality of the situation? Is it time for us as friends to push harder or back off?
I’m a 50 year old male and had pretty much the same story going on in my life. 10/21/2011 is when I found out I had MM but to make a very long story short. They wanted me to do the transplant too but after days and nights of research for about a year I found a different route and it’s so easy with no side effects and I have been cancer free for close to 270 days! But your friend will have to make some life style changes. If you would like more info you can email me at ■■■■■■■■■■■■■■■■■■■■■■ I would be more then happy to share my info with you. I don’t try to sell you anything or claim to cure anyone. I just want to help people that will listen and want to help their self .there is hope so please never give up!
Hello, Lizzy, so sorry to hear about your friend. My husband died from multiple myeloma. It is a difficult disease, with many twists and turns as you are seeing. First, let me say that the kidney problem is part of multiple myeloma; nothing to do with water consumption. The doctors should be telling her that. I'm shocked that they can't do the cement fusion. Sounds like they don't have the disease in as much control as her medical team is letting on. Sounds like some straight talk is needed from them, but if your friend wants to live in denial, she will live in denial until the truth is known. She may look at you as "naysayers", so she may not listen to you. Sounds like -- with so many fractures -- that the bone marrow biopsy might have been 95% MM, 5% okay. That doesn't seem right.
I'll say this. She is so lucky to have friends that care as you do. Continue to be there, offer suggestions and help as you can, but in the end it is her personal choice.
Hi Joni, thank you for your reply to my post. It was confirmed by our mutual friend who attended our friend’s doctor appt. that her biopsy did in fact show 5% MM cells. Curious why you thought the bone marrow biopsy might have been 95% MM? If our friend had MM for 3-4 years prior to diagnosis, couldn’t that have caused all the spine damage? And you are so right on with your comment about us as her friends being “naysayers” SAD…
Any other input you could share would be greatly appreciated.
My condolences on the loss of your precious husband.
Hi, Lizzy, when my husband was finally treated by the right treatment facility -- MM Institute in Little Rock, Ark. -- he had MM in 99% of his bone marrow. And, he was having as many fractures as you describe. However, they had placed rods in his upper right and left legs, upper right arm due to the tumors. Most of his fractures were ribs.
Where is your friend being treated? That can be very important with MM, since it's fairly rare. Has she had a 24-hr. urinalysis? Kidney function does go down with MM. As far as transplants, that is pretty standard protocol.
MM reduces your immune system--even during and after treatment. Your friend should be extra careful during flu season--vigilant against germs. Out of four friends with MM that Gordon went through treatment with, one died of West Nile, and one died of swine flu (5 years after treatment).
Do what you can, and then don't beat yourself up. The ultimate decision is the patients--rightly so.
Lizzy said:
Hi Joni, thank you for your reply to my post. It was confirmed by our mutual friend who attended our friend's doctor appt. that her biopsy did in fact show 5% MM cells. Curious why you thought the bone marrow biopsy might have been 95% MM? If our friend had MM for 3-4 years prior to diagnosis, couldn't that have caused all the spine damage? And you are so right on with your comment about us as her friends being "naysayers" SAD...
Any other input you could share would be greatly appreciated.
My condolences on the loss of your precious husband.
Hi, Lizzy, when my husband was finally treated by the right treatment facility -- MM Institute in Little Rock, Ark. -- he had MM in 99% of his bone marrow. And, he was having as many fractures as you describe. However, they had placed rods in his upper right and left legs, upper right arm due to the tumors. Most of his fractures were ribs.
Where is your friend being treated? That can be very important with MM, since it's fairly rare. Has she had a 24-hr. urinalysis? Kidney function does go down with MM. As far as transplants, that is pretty standard protocol.
MM reduces your immune system--even during and after treatment. Your friend should be extra careful during flu season--vigilant against germs. Out of four friends with MM that Gordon went through treatment with, one died of West Nile, and one died of swine flu (5 years after treatment).
Do what you can, and then don't beat yourself up. The ultimate decision is the patients--rightly so.
Lizzy said:
Hi Joni, thank you for your reply to my post. It was confirmed by our mutual friend who attended our friend's doctor appt. that her biopsy did in fact show 5% MM cells. Curious why you thought the bone marrow biopsy might have been 95% MM? If our friend had MM for 3-4 years prior to diagnosis, couldn't that have caused all the spine damage? And you are so right on with your comment about us as her friends being "naysayers" SAD...
Any other input you could share would be greatly appreciated.
My condolences on the loss of your precious husband.