Hi my name is Pamela Lussier and I was diagnosed with Multiple Myeloma Dec. 2007 when my failing kidney's were biopsied. My doctor told me I had probably been walking around with full blown myeloma for about 3 years, so all together I have had it 8 years. I hadn't been feeling well for a long time previous to my diagnosis. In fact I remember telling a friend that I felt so bad I should have died by now. But I couldn't get my doctor to really understand that I was seriously ill. And as a stoic new englander with 6 children and a busy art business that I shared with my husband I just kept going. It wasn't until I applied for life insurance and was rejected that I was finally diagnosed.
My first encounter at my beloved Dana Farber Hospital in Boston wasn't completely successful either (this was prior to multiple myeloma diagnosis). The first doctor I saw didn't think that I had cancer because I looked too good to have had multiple myeloma so long that my kidneys were failing. ( what ever that means) He sent me to a wonderful kidney doctor at Brigham and Women's, their sister hospital. My kidney doctor felt I had multiple myeloma, scheduled a kidney biopsy. multiple myeloma was diagnosed and got me in for treatment at Dana Farber. All this took much too long and although I received treatment in January for my multiple myeloma, which was Velcade, dex, and thalomid ,by September my kidneys had failed and I was put on dialysis for awhile I was being treated for multiple myeloma and receiving dialysis. That was pretty awful. I received treatment for about 16 months and then I was in full remission.
I did in center dialysis for over a year, then my husband and I trained for NX Stage dialysis, which is an amazing little machine we can do ourselves and even take on trips.
I am presently trying to get a kidney transplant. we actually had the surgery all set up for June 30th this year, But our last eval with one of the team members had one of the transplant doctors raising a lot of questions about multiple myeloma. We were very disappointed but are determined to get some answers. I have already found one lady with multiple myeloma who had received a kidney transplant ,who is fine 4 1/2 years later . Her doctors think the antirejection drugs may be helping keep her multiple myeloma in remission. If there is anyone out there who has had a kidney transplant, please tell me your story. 20% of multiple myeloma people have renal failure, I am sure I am not the only one who would like a new kidney.
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Pamela Lussier - Name: Pamela Lussier
- Who do you know with myeloma?: Pamela Lussier
- When were you/they diagnosed?: 2007
- Age at diagnosis: 50
Re: Pam's story multiple myeloma and renal failure
Hi Pam,
Of all the stories I have read...your's is most similar to my mother's. she was diagnosed April 15 after coming down with a high fever and going into full kidney failure in the course of five days. She has been on dialysis six months now. They started her treatment with melphalan prednisone four days every six weeks. In September they determined it was not effective and prescribed Velcade. After two treatments mom became deathly ill with uncontrollable vomiting an diarrhea. She was taken to the ER for IV fluids and sent back to the nursing facility. She spent five days without food or water. She has decided to stop her chemo and go home to die.
Mom urinates each month when her bladder is so full. Some doctors say it is fluid from the dialysis, other's believe she is still making urine. I am not sure how much longer momma has...but I support her decision.
Of all the stories I have read...your's is most similar to my mother's. she was diagnosed April 15 after coming down with a high fever and going into full kidney failure in the course of five days. She has been on dialysis six months now. They started her treatment with melphalan prednisone four days every six weeks. In September they determined it was not effective and prescribed Velcade. After two treatments mom became deathly ill with uncontrollable vomiting an diarrhea. She was taken to the ER for IV fluids and sent back to the nursing facility. She spent five days without food or water. She has decided to stop her chemo and go home to die.
Mom urinates each month when her bladder is so full. Some doctors say it is fluid from the dialysis, other's believe she is still making urine. I am not sure how much longer momma has...but I support her decision.
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ladyleese - Name: Lisa
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 79
Re: Pam's story multiple myeloma and renal failure
Hi Ladyleese,
I am so sorry about you mother. She is at an age where the fight probably doesn't seem worth it. If she goes to 3 times a week dialysis, it just barely cleans your blood. You don't feel well, just barely alive. Add multiple myeloma to that and she probably doesn't have the strength to go on. I'm glad you support her decision. I have an 89 year old friend at the dialysis clinic who's children insist he goes and at this point he wold rather not be kept alive artificially. But they insist. He is very depressed.
I am younger and have 6 children who are not quite all grown up , though technically several are adults. I am also an artist and painting instructor. I don't feel like my life is over. In fact I am painting better than ever and can't wait to see what I do with that if I get some more years to do it. I have been in complete remission from multiple myeloma for over 3 years and my husband does my dialysis at home 5 days per week. My kidneys are damaged but they don't seem to be any worse. I make urine several time a day and about 5 times a night. Lol! If I get the right amount of fluid off for my dry weight ,by morning I might be cramping from dehydration. So I do what I need to do but it's not that bad.
I am praying for your mother and family. My parents passed away at around the same age (78, 72) and it seems too young. I'm sure you are a big comfort to her.
Best Regards,
Pam
I am so sorry about you mother. She is at an age where the fight probably doesn't seem worth it. If she goes to 3 times a week dialysis, it just barely cleans your blood. You don't feel well, just barely alive. Add multiple myeloma to that and she probably doesn't have the strength to go on. I'm glad you support her decision. I have an 89 year old friend at the dialysis clinic who's children insist he goes and at this point he wold rather not be kept alive artificially. But they insist. He is very depressed.
I am younger and have 6 children who are not quite all grown up , though technically several are adults. I am also an artist and painting instructor. I don't feel like my life is over. In fact I am painting better than ever and can't wait to see what I do with that if I get some more years to do it. I have been in complete remission from multiple myeloma for over 3 years and my husband does my dialysis at home 5 days per week. My kidneys are damaged but they don't seem to be any worse. I make urine several time a day and about 5 times a night. Lol! If I get the right amount of fluid off for my dry weight ,by morning I might be cramping from dehydration. So I do what I need to do but it's not that bad.
I am praying for your mother and family. My parents passed away at around the same age (78, 72) and it seems too young. I'm sure you are a big comfort to her.
Best Regards,
Pam
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Pamela Lussier - Name: Pamela Lussier
- Who do you know with myeloma?: Pamela Lussier
- When were you/they diagnosed?: 2007
- Age at diagnosis: 50
Re: Pam's story multiple myeloma and renal failure
Pam,
I'm truly sorry you've had to go through all that you've endured. Sometimes when I think of all the doctors that I saw before being diagnosed, (not my current md), I get very angry. Probably around 2007, I noticed a pain in my back and started the odyssey of finding out what was causing it. To make a long story short, I visited 7 professionals, (I think) among whose diagnosis were ("your one leg is longer than the other", "go to PT, etc".) I can't remember all the diagnosis. Plus, all the ideas for what I should do came from me. Finally I suggested an MRI, and the doc who was seeing me at the time agreed and wrote a script. That probably saved my life, because they found my bone marrow was red and sandy dry. The oncologist at the er I went to immediately started treating me with radiation and chemo. So I probably had cancer for about 3 years before someone had the smarts to diagnose it correctly. Doctors have to start taking women seriously.
Kathryn
I'm truly sorry you've had to go through all that you've endured. Sometimes when I think of all the doctors that I saw before being diagnosed, (not my current md), I get very angry. Probably around 2007, I noticed a pain in my back and started the odyssey of finding out what was causing it. To make a long story short, I visited 7 professionals, (I think) among whose diagnosis were ("your one leg is longer than the other", "go to PT, etc".) I can't remember all the diagnosis. Plus, all the ideas for what I should do came from me. Finally I suggested an MRI, and the doc who was seeing me at the time agreed and wrote a script. That probably saved my life, because they found my bone marrow was red and sandy dry. The oncologist at the er I went to immediately started treating me with radiation and chemo. So I probably had cancer for about 3 years before someone had the smarts to diagnose it correctly. Doctors have to start taking women seriously.
Kathryn
Re: Pam's story multiple myeloma and renal failure
Kathryn
I know of a Guy that had the same circumstances as you. He kept seeing the same Dr. though. For 3 years he had pain, anemia and fatigue. He was finally dx'd in Jan. 2012 with stage 3 multiple myeloma. He only finally found out because he ended up with a collapsed Vertebrae. If I kept seeing my first Dr. I probably would not know I have SMM. He thought nothing of my Hemoglobin at 12 and my abnormal serum and urine protein levels. I think Dr's like these need to wake up and take everyone seriously.
I guess thats the difference between the Dr's that got A's and the ones that got C's in Med school. Thank goodness My insurance agent was adamant about me getting another opinion as to why I was declined for life Insurance. The next Dr i saw was all over my Labs and I was dx'd within 2 weeks.
I know of a Guy that had the same circumstances as you. He kept seeing the same Dr. though. For 3 years he had pain, anemia and fatigue. He was finally dx'd in Jan. 2012 with stage 3 multiple myeloma. He only finally found out because he ended up with a collapsed Vertebrae. If I kept seeing my first Dr. I probably would not know I have SMM. He thought nothing of my Hemoglobin at 12 and my abnormal serum and urine protein levels. I think Dr's like these need to wake up and take everyone seriously.
I guess thats the difference between the Dr's that got A's and the ones that got C's in Med school. Thank goodness My insurance agent was adamant about me getting another opinion as to why I was declined for life Insurance. The next Dr i saw was all over my Labs and I was dx'd within 2 weeks.
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
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