My husband had a plasmacytoma of the bone (diagnosed in January) that, while it responded to radiation, came right back with in 3 months. This and the offending rib have recently been removed, and he is currently on a Revlimid-Velcade-dexamethasone regimen for 4-6 months.
His bone marrow and other lab results were good at the start of this. His Hgb is low (now at 11.8). His WBC, Hct and platelet counts are with in normal range, but all three havestarted trending down.
His big issues now are total exhaustion and gout-like symptoms. Uric acid is normal, so our family doctor does not feel it is gout. He is taking Indocine [indomethacin] for these symptoms. He is having a lot of pain in his back and chest area, which I am assuming corresponds with where his rib was removed. He is also experiencing a great deal of shortness of breath. His surgery is now about 7 weeks out, so I am hoping this improves soon.
The diagnosis had read single plasmacytoma, but I noted on the paper work from his last appointment it is now multiple myeloma w/o remission. I have not been able to attend all his appointments with him, as I would like, thus did not get a chance to ask about this.
Thank you for being here to help us learn more about this disease that has taken over our life and helping me understand (at least a little) about how I can help him and (I hope) be a better caregiver.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Our story with multiple myeloma
Sorry to hear about your husband. You have come to the right place with your concerns. My problems started with the same thing as your husband. Pain in a rib. That was about 3 1/2 years ago. The surgeon was sharpening his knife until a biopsy showed no problems outside the bone, so I got 25 doses or radiation therapy instead of the surgery. Other than a bit of fatigue, I had no side effects whatsoever.
Of course, I then had to follow up with a hemo doc, and she monitored my blood test results for about 3 years and, as my protein levels were climbing, she ordered a BMB and that showed about 30% plasma cells. Then a skeletal survey revealed 4 lesions on the long bones of my arms and legs.
I am now on my second month of the same chemotherapy your husband is having and the blood tests all show great improvement for now. It would seem to me that your husband's greatest problems have been the result of the surgery. Did he have any trouble with the radiation??
Chemo side effects for me so far have been stomach and digestive related, which keeps me close to the house for a day or two after treatment, if you know what I mean. Soreness of the mouth and tongue along with severe reflux and heartburn were also a problem, as well as a slight feeling of nausea occasionally. Immodium takes care of the first problem and the doc prescribed Nexium [esomeprazole] and some real nasty mouthwash for the others. Things are looking up, at least for now.
They are already hinting around at a SCT, but I am 68 years old this month and have kidney and heart issues that might complicate things. I was feeling fine before the chemo started, and now I lose 2 1/2 or 3 days out of each week. A transplant might shoot me down a lot worse than that, so I wonder if it would really be worth it for a little more time of lesser quality. Most doctors have their heart in the right place, but few of them have endured what they expect their patients to go through.
Best of luck to both of you, and keep us posted. There is a lot of good help available on this site and it is a good place to get things off your chest when you need to.
Charlie (Grouchy German)
Of course, I then had to follow up with a hemo doc, and she monitored my blood test results for about 3 years and, as my protein levels were climbing, she ordered a BMB and that showed about 30% plasma cells. Then a skeletal survey revealed 4 lesions on the long bones of my arms and legs.
I am now on my second month of the same chemotherapy your husband is having and the blood tests all show great improvement for now. It would seem to me that your husband's greatest problems have been the result of the surgery. Did he have any trouble with the radiation??
Chemo side effects for me so far have been stomach and digestive related, which keeps me close to the house for a day or two after treatment, if you know what I mean. Soreness of the mouth and tongue along with severe reflux and heartburn were also a problem, as well as a slight feeling of nausea occasionally. Immodium takes care of the first problem and the doc prescribed Nexium [esomeprazole] and some real nasty mouthwash for the others. Things are looking up, at least for now.
They are already hinting around at a SCT, but I am 68 years old this month and have kidney and heart issues that might complicate things. I was feeling fine before the chemo started, and now I lose 2 1/2 or 3 days out of each week. A transplant might shoot me down a lot worse than that, so I wonder if it would really be worth it for a little more time of lesser quality. Most doctors have their heart in the right place, but few of them have endured what they expect their patients to go through.
Best of luck to both of you, and keep us posted. There is a lot of good help available on this site and it is a good place to get things off your chest when you need to.
Charlie (Grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Our story with multiple myeloma
Grizlump,
Thank you for your response. I am sorry to hear of your issues and your needing a SCT. Those types decisions can be hard to make.
That is something my husband is not sure he will go for if it is ever required. He worries about the cost. So far, our insurance has paid well with being about $6,000 out of pocket. He is very worried about next year, though, as we used much of our savings for this.
My husband had 28 sessions of radiation and the CT's showed it was working. Approximately 5 days before he was due for his follow-up CT, he turned wrong and fractured the rib (this happened twice before it was removed). The CT showed that all was back to where it had been prior to the radiation.
He was sent to a specialist in Chicago for a consult and that ultimately led to having the rib removed. He was having a lot of shortness of breath prior to all this and still does. Since this was all pushing on his lung, they did have to collapse the lung to remove, the rib so he will be short of breath for awhile.
I am sure his pain right now is due to the surgery. Where the pseudo-gout came in, I don't know.
As far as the chemotherapy goes, he tires easily and is having gastrointestinal issues as well. This last injection left a huge red blotch on his arm. The other two did not.
He sees his oncologist Thursday prior to his next injection. I am hoping to get off work at least long enough to go to the appointment with him.
Thank you for your response. I am sorry to hear of your issues and your needing a SCT. Those types decisions can be hard to make.
That is something my husband is not sure he will go for if it is ever required. He worries about the cost. So far, our insurance has paid well with being about $6,000 out of pocket. He is very worried about next year, though, as we used much of our savings for this.
My husband had 28 sessions of radiation and the CT's showed it was working. Approximately 5 days before he was due for his follow-up CT, he turned wrong and fractured the rib (this happened twice before it was removed). The CT showed that all was back to where it had been prior to the radiation.
He was sent to a specialist in Chicago for a consult and that ultimately led to having the rib removed. He was having a lot of shortness of breath prior to all this and still does. Since this was all pushing on his lung, they did have to collapse the lung to remove, the rib so he will be short of breath for awhile.
I am sure his pain right now is due to the surgery. Where the pseudo-gout came in, I don't know.
As far as the chemotherapy goes, he tires easily and is having gastrointestinal issues as well. This last injection left a huge red blotch on his arm. The other two did not.
He sees his oncologist Thursday prior to his next injection. I am hoping to get off work at least long enough to go to the appointment with him.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
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