Multiple Myeloma
Discussion List
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disability ins
Should I ask the insurance company this question?.......If my myeloma cancer becomes stable will I lose my disbility payments?..... Has anyones cancer become stable will collecting disability ins? I'm also collecting SSD. I lose my job in July. I'm nervous I will lose my ins and have no job. I cannt work because of bone…
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help
Hi, I am new to the post and looking for any answers. My Dad is 66 and was just diagnosed with MM. 3 months ago we were mountain biking, swimming in big waves, and were a very active family and he seemed to be very healthy. In the last 4 weeks he started to get severe back pain which started the tests that led to being…
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Can Stem Cell replacement cure a stage-1 MM patient?
My mother-in-law was diagnosed of MM almost 8 months ago. This was stage-1 MM. She has been given 6 cycles of Chemotherapy (based on Thaldex regime). She had developed DVT due to chemo port being inserted and that caused her a lot of pain. Apart from this one incident; the cycles have been successful with the usual…
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neuropathy
I was taking Thalomid, ultimately at 200 mg. I started experiencing neuropathy in my feet and hands and alerted my doctor. During my period of taking Thalomid and Dexamethasone, I achieved very good results. In fact, myeloma was diagnosed 6/06 and in March a bone marrow test showed normal results. I stopped the Thalomid 2…
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ZOMETA
I am currently a survivor of Stage 4 colon cancer with 8/20 lymphnodes positive since Aug. 2003. I have been ill since the surgery. I am 51 yrs old. Since the surgery I have had chemo, radiation to the pelvic area, I am on fragmin injections for blood clots and have developed a new disease called myloid dyplastic syndrome.…
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what do I do now?
I had a plasmacytoma in my nasopharnyx region and wanted to know if anyone else had a similar situation. I get a sticky film in my mouth and am really embarrased by it. I guess it's dead cells that were damaged due to radiation?? Any recommendations on how to manage it better? I drink a lot of water and use Crest Pro…
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searching for others w mm in Rancho Cordova, CA
I am now 40 & was diagnosed w multiple myeloma in July 2005. The disease had been causing bone damage & pain for at least a yr prior to my diagnosis. I grew up in Rancho Cordova, CA where I'm told others, of similar age, have also been diagnosed w mm. I am trying to determine if a cluster exists. If you can advise how to…
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stem cell transplant
I am going to have a 2nd stem cell transplant soon. these are my cells that were frozen 2003, after my 1st transplant. I would like to hear from someone that went through another transplant. also, I now have neurapthy in both leggs and feet. seems like I am walking on gravel and my balance is out of controol most of the…
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Trouble Breathing
My father in-law was diagnosed in March after 6 months of back pain. He was originally on Thal/Dex which made him very sick and shut his kidneys down. He just completed his Velcade treatment with steller results, however they have just determined that he has nerve damage to his diaphgram from the Velcade causing him to…
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Velcade and dexamethasone
Hi all, after both, a stem cell transplant failure and thalidomide treatment failure, my new oncologist have decided to start me on Velcade to see if that gets my MM in remission. IÃÂll be also getting a low dose of dexamethasone (He said about 4mg) but we didnÃÂt talk about the frequency of taking dexamethasone at the…
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Caregiver to MM patient who chose not to treat
My mother was diagnosed with MM in April of 2004 and chose to have no treatments. She is beginning to have some significant pain and can barely walk. I am looking for anyone in a similiar situation for mutual support.
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MM - where to begin?
My father passed away this January of kidney cancer. My mom was diagnosed with indolent MM in Jan. 2004, which was preceeded by a 17 year history of monoclonal gammopathy, a frequent pre-cursor to myeloma. I am an only child, and was in medical school up until last January when my dad passed away. I was supposed to go back…
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thalidomide
I would like to hear from those on thalidomide. I am taking 200 mgm every day and Decadron 40 mgm 5 days a month. Would appreciate any feed back of those willing to share. Thanks.
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anyone know anything about Zelcade?
Hello everyone, My father has pretty advanced plasmacytoma/multiple myeloma (I'm a little ignorant about the details) and he is curious about trying to get into zelcade clinical trials as a last resort- in the SF Bay Area preferably. I can't find anything via googling and would be very appreciative if any of you would have…
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MM with fevers???
My dad has been living with MM for 4yrs. He had a stem cell transplant 3yrs ago which didnt take. He's been on thelidamid, steroids, chemo and other drugs. He is now in stage 4. Back in Nov his count was about 9000, now its 1700 and going up. My question is he has horrible shakes which make his teeth chatter (says the…
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VALCADE needed
writing from Poland.Looking for help to get VALCADE to rescue 52 years old man.Couldnt get grants for valcade treatment.May be you know the hospital in Europe that could at least partially grant 24 ampoules of validomid??It is hard to collect the whole sum but want him to live.Valcade can hardly be bought in…
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Protein Counts
My best friend's dad - he's 74, she's 29- was diagnosed with MM in June 05. He started treatment straight away with a view to having a bonemarrow transplant, however has had two heart attacks in the last three weeks. They have basically stopped all treatment. An angiogram today showed he has a 70% restriction in his…
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myeloma and mds
Hi. My husband is a myeloma patient, diagnosed in July 2000. He had a year of heavy chemo (his doctor at the time thought he would not be eligible for a stem cell transplant because he had kidney failure due to the myeloma. However, he went to UAMS and they did a tandem transplant in 2003. After 14 months, he is now…
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Allogenic Transplant
I would like to hear from people that have survived this transplant. Is it worth going through? Is it a tough road? I know without trying it is a certain death sentence.
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Discussion groups
For those of you who are interested in being involved with a more active MM discussion group, there are two very good ones you can easily join...one is at acor.org (best to ask for digest form) and the other is at myeloma@coolist.com. Both of these have many members who discuss all aspects of MM. I have learned a lot in…
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Neurological question
Hi, my 75 year old father was diagnosed with MM in May 2004. Due to previous bypass, stem cell replacement has been rejected. He is responding well to Decadron and Thalomide treatment with minimal side effects. He's being treated at the Boston VA through doctors at the Dana Farber. New problem is he is having some trouble…
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Insurance options
My lifetime limit for transplant is 250k. My autogolus BMT for MM was approx 150-200k. I am a stay home mom and am covered by my husband's insurance. If I need another transplant I am afraid my insurance balance won't cover it. Any suggested options besides changing jobs and insurance?
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Father diagnosed with MM
My father is 67 years old and has just been diagnosed with MM. Even at 67 he could outwork most people but he started having some problems. He started getting short of breath in Oct 02. A tread mill test was done to check his heart followed by a heart cath. No blockages were found only a small restriction. He was given…
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how long will side effects last?
I had 9 treatments of cytoxan over 7 months.I am now on a maintenance dose of 50 mg Prednisone every other day.I was wondering if anyone can tell me how long the fatigue etc from the chemo should last.I would like to go back to work.
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Young MM patients
Hi. My sister was diagnosed with MM in 1996 at the age of 34. At the time, she had a tumor removed from her leg and had radiation. Since, she has had a stem cell transplant, chemo, more radiation, steroids, etc. She is doing well for having had MM for 8 years. I have found that it is rare for someone so young to have MM. I…
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Support Group in Alabama
Fellow survivers here who live in or near Alabama, who would like to start a support group in North Alabama Please email me at krp@hiwaay.net My name is Kevin.
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roller coaster
My 65 year old mother was diagnosed with MM in October '02. In 12/02 she was told that it wasn't MM. Now she just got told that it is MM. I feel like I am on a roller coaster. Can anyone tell me what to expect, and what treatments are available? Thanks Su
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Amyloid
Just wanted to let you know that if you received an amyolid diagnosis with or without multiple myeloma that my husband has survived the transplant. I know this is such a rare, rare disease that you maybe searching for info. Be glad to help you if I can.
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Multiple Myeloma experiences
Reading the notes posted by everyone, at looks like we should compare the treatments that we have received. I notice one person is taking the Dex------- don't remember the complete spelling, but we call it decodron. my husband is on this same medicine, but it's only a part of his treatment. The completed treatment has the…
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Taking Thalidomide
After 7 chemo treatments last year that took the cancer in my marrow down to 15%, my doctor put me on 200 mg. of Thalidomide daily. But i am having side effects...my fingertips and toes are numb, and the rest of my feet and fingers are semi-numb. He has reduced the dose twice, and now i am only taking 50 mg.a day. But he…
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