Hello,
I am 45 year old male, recently dx with Myeloma stage-I as per international system. I am waiting for my appointment for second opinion and my onc said that we will start treatment on apr-22 with dev+dex.
However, last week my weight was 150 pounds (from 154 in Dec-09) and this morning when I checked, my weight was 148.
I am trying to increase my calorie intake. However, I am not taking any sugar and have not started any treatment yet.
Question is: should I be calling my onc or wait a couple of days and keep an eye on the weight and also weigh on a different weighing scale to ensure correctness..
Any help would be greatly appreciated.
Jay
Forums
5 posts
• Page 1 of 1
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Jay2010 - Name: Jay
- Who do you know with myeloma?: Forum Friends
- When were you/they diagnosed?: March-2010 (Washington DC)
- Age at diagnosis: 45
Re: Sudden weight loss
Dr. William Bensinger from the Fred Hutchinson Cancer Research Center said:
"I would not be concerned about your weight in the short term but it is important to eat a normal diet so that your nutritional status remains optimum. That will allow your body to tolerate the anti-myeloma treatments that will start in 10 days."
"I would not be concerned about your weight in the short term but it is important to eat a normal diet so that your nutritional status remains optimum. That will allow your body to tolerate the anti-myeloma treatments that will start in 10 days."
Re: Sudden weight loss
Hi Jay,
you have stage 1 dx and normaly it's standard not to treat stage 1 myeloma (wait and see).
I am wondering why your onc. will start treatment on apr-22 with dev+dex.
I was dx in 1999 with stage 1 A myeloma after spinal surgery (total lytic lesion th4).
I have been not treated since more then 10 years (only bisphosphonates every 3-4 months).
I am slowly in progress but the onc´s will wait until CRAB conditions will rising up (symptoms).
you have stage 1 dx and normaly it's standard not to treat stage 1 myeloma (wait and see).
I am wondering why your onc. will start treatment on apr-22 with dev+dex.
I was dx in 1999 with stage 1 A myeloma after spinal surgery (total lytic lesion th4).
I have been not treated since more then 10 years (only bisphosphonates every 3-4 months).
I am slowly in progress but the onc´s will wait until CRAB conditions will rising up (symptoms).
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Rudi - Name: Rudi
- When were you/they diagnosed?: 1999 at stage 1A, spinal column surgery
- Age at diagnosis: 46
Re: Sudden weight loss
Rudi,
I am animic (Hemoglobin 10.0) and also have ostopenia (spelling) which are sort of CRAB. My staging is based on international system every single oncologist (local + hopkins + family) suggested to go with the treatment.
Earlier we were leaning towords rev + dex. However, it seems data shows that if you were in remission before transplant then you will have longer remission after the transplant.
The Hopkins is suggesting Cybor-D protocol followed by transplant.
Anyone on the board who has been on Cybor D (Velcade + Cyxton + Dex)..? I am overwhelmed and scared.
Jay
I am animic (Hemoglobin 10.0) and also have ostopenia (spelling) which are sort of CRAB. My staging is based on international system every single oncologist (local + hopkins + family) suggested to go with the treatment.
Earlier we were leaning towords rev + dex. However, it seems data shows that if you were in remission before transplant then you will have longer remission after the transplant.
The Hopkins is suggesting Cybor-D protocol followed by transplant.
Anyone on the board who has been on Cybor D (Velcade + Cyxton + Dex)..? I am overwhelmed and scared.
Jay
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Jay2010 - Name: Jay
- Who do you know with myeloma?: Forum Friends
- When were you/they diagnosed?: March-2010 (Washington DC)
- Age at diagnosis: 45
Re: Sudden weight loss
Jay,
I have been on many of the meds that are proposed for your treatment. Here is what I went through.
Velcade, Revlimid, Decadron -- Side effects -- steroid face from the Decadron plus it gave me a burst of energy for 24 hours after getting the chemo. I had diarrhea from the Revlimid. Fatigue from the overall chemo. Other than that, no problems. Complete response after three rounds. I did not lose my hair from this.
C-DEP -- Cyclophosphomied, dexamethosone, etoposide, cisplatin -- I had a catheter put in my chest and was hospitalized for 96 hours of continuous infusions of this cocktail. Two weeks after leaving the hospital I started losing my hair. I had to be given meds because I was not producing enough urine. This was no picnic.
Neupogen -- After one week of giving myself these injections I started having a whole lot of bone pain. My oncologist prescribed pain meds. Turned out, I produced a whole boatload of stem cells. They harvested over 25 million when I only needed about seven or eight million for the transplant. The bone pain was from all the stem cells I was producing.
Stem Cell Transplant -- It took about an hour for the melphalen bag to empty. Chew the ice cubes. That way you won't develop mouth sores. Then, over the next couple of weeks, the melphalen will work its magic. I became very tired. I really didn't talk to the nursing staff a whole lot or my caregiver because when I am tired and sick I can be a grouch and didn't want to say anything mean. The next day I received my stem cells. I went home on day 14 or 15, once they started to graft. I had a platelet transfusion on the day I left the treatment center.
I had no real side effects -- infections, ect... from the transplant. Just a whole lot of fatigue. I still get tired easily. My hair started to grow back withing six to eight weeks. I have a full head of hair now -- eight months later. My biggest problem in the hospital was not producing enough urine. They gave me a shot for that.
In short, a person my age -- 45 -- will not have as many side effects. Still, a stem cell transplant is no walk in the park. But so far, so good.
I have been on many of the meds that are proposed for your treatment. Here is what I went through.
Velcade, Revlimid, Decadron -- Side effects -- steroid face from the Decadron plus it gave me a burst of energy for 24 hours after getting the chemo. I had diarrhea from the Revlimid. Fatigue from the overall chemo. Other than that, no problems. Complete response after three rounds. I did not lose my hair from this.
C-DEP -- Cyclophosphomied, dexamethosone, etoposide, cisplatin -- I had a catheter put in my chest and was hospitalized for 96 hours of continuous infusions of this cocktail. Two weeks after leaving the hospital I started losing my hair. I had to be given meds because I was not producing enough urine. This was no picnic.
Neupogen -- After one week of giving myself these injections I started having a whole lot of bone pain. My oncologist prescribed pain meds. Turned out, I produced a whole boatload of stem cells. They harvested over 25 million when I only needed about seven or eight million for the transplant. The bone pain was from all the stem cells I was producing.
Stem Cell Transplant -- It took about an hour for the melphalen bag to empty. Chew the ice cubes. That way you won't develop mouth sores. Then, over the next couple of weeks, the melphalen will work its magic. I became very tired. I really didn't talk to the nursing staff a whole lot or my caregiver because when I am tired and sick I can be a grouch and didn't want to say anything mean. The next day I received my stem cells. I went home on day 14 or 15, once they started to graft. I had a platelet transfusion on the day I left the treatment center.
I had no real side effects -- infections, ect... from the transplant. Just a whole lot of fatigue. I still get tired easily. My hair started to grow back withing six to eight weeks. I have a full head of hair now -- eight months later. My biggest problem in the hospital was not producing enough urine. They gave me a shot for that.
In short, a person my age -- 45 -- will not have as many side effects. Still, a stem cell transplant is no walk in the park. But so far, so good.
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Matt - Name: Matt Linden
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2009
- Age at diagnosis: 44
5 posts
• Page 1 of 1