I will be 70 next July. I see that everyone on this forum is 62 or younger, this is kind of scary.
I found out I have MMyleoma on Dec 5th but now know that I have had it since at least last February. I will be haveing a PET scan this Tuesday, Jan 4th and will here my results on the 10th. I know almost nothing about this disease. Can any of you tell me why everyone on this forum is so much younger.
What can I expect to hear when I go for the results on the 10th? I read about all the options and don't know half of what your talking about. Do any of you know anbody in their 70's with this condition?
Forums
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elaine - Name: Elaine
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 5, 2010
- Age at diagnosis: 69
Re: stem cell transplant
Elaine, my husband (Rex) had stem cell transplant in October and was one of the "younger" ones on the unit (61). The gentlemen in the next room was 71 and down the hall was another who was late 60's. I don't have an aswer on the age thing as it seems to be all over the place from 20's to 80's. Seach this site thoroughly and you will find a wealth of information on everyone's experiences -- most will tell you to become informed on myeloma - find out what your treatment options are and then proceed. There could be lots of blood tests, more than likely a bone marrow biopsy, all of which may tell you the stage of the disease. We keep a notebook of everything from lab results to a daily log of how he felt to blood pressure readings - all of which help for your appointments. Please know that those on this site are always here for you and ready to offer any support possible. Best wishes to you. Rex and Kay
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: stem cell transplant
Hi Elaine. My husband, age 74, was finally diagnosed in June. Your tests should include numerous blood tests, urine tests, bone marrow biopsy, full skeletal xrays, etc. The bone marrow test is crucial because it should reveal any genetic, chromosome issues you may be facing. Some patients are considered standard risk and some are considered high risk if there are certain genetic factors such as deletion of chromosome 17. In my husband's case he was considered high risk. At the present time he has opted not to have a stem cell transplant and was intially treated with Velcade and dexamethasone. Due to some peripheral neuropathy, (and some other health issues) he has been on a chemo break. His myeloma did, however, respond very quickly to the Velcade dex. I have found the Myeloma Beacon to be an invaluable resource and I read it every day. As you may know by now, there are numerous treatments for myeloma and many more coming down the pipe. There are some who will proceed to treat it very aggressively and others more conservatively. Due to my husband's age, we are opting for a little more conservative treatment at the present time. One thing I have learned from the Myeloma Beacon community is once you decide on a course of treatment, don't second guess yourself because if one treatment fails, you will simply move on to the next. Good luck and I hope you will continue posting and let us know how you are doing.
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valerie - Name: Valerie
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: June, 2010
- Age at diagnosis: 74
Re: stem cell transplant
Next month (Feb.2011) will be the 2 year anniversary of my autologous SCT. I was diagnosed Stage 3 in Sept. 2008. Prior to the transplant I had 4 rounds of inductive chemo (Velcade and Dex). I've been in complete remission ever since. Blood work and 24 hour urine tests every 6 weeks confirm.
I was really scared about the SCT. I had never had a major health problem until I was diagnosed at age 59. My medical care is at Mass. General Hospital. I was inpatient for 3 weeks for the SCT. The most difficult period was when I developed mucositis in my esophagus: 4 days of misery in trying to swallow ( finally morphine did the trick - I should have taken it when it was first offered!) Other than that, the meds I got took care of the other side effects like nausea and diarrhea. Overwhelming fatigue was the major hurdle for 2 months after I got home. But by May I was driving again, and that summer I kayaked and biked a bit, as well as walked at least a mile or 2 on most days.
My only leftover stuff from the multiple myeloma is neuropathy in my hands and feet ( from the Velcade) and nerve pain in my torso (from the 2 collapsed vertebrae that resulted in my diagnosis). I consider these conditions a small price to pay to have dodged the multiple myeloma bullet for now.
When relapse rears its ugly head, I would not hesitate to do a 2nd SCT if recommended by my doctors. I was able to store extra stem cells from the harvesting process and their "expiration date" is still a few years off. Even though my response to the inductive chemo was excellent, I saw the SCT as "insurance" to maintain remission as long as possible.
The uncertainty of this disease can be really anxiety-provoking. The good news is that new treatments are arriving almost every day it seems.
One more thing...I never considered myself vain, and in anticipation
of hair loss, I shaved my head the day before I entered the hospital. However, I didn't anticipate how cold it is in New England when one is bald! Next time I'll try to plan better...
The Beacon is a wonderful resource. Thanks to everyone who posts info/experiences.
I was really scared about the SCT. I had never had a major health problem until I was diagnosed at age 59. My medical care is at Mass. General Hospital. I was inpatient for 3 weeks for the SCT. The most difficult period was when I developed mucositis in my esophagus: 4 days of misery in trying to swallow ( finally morphine did the trick - I should have taken it when it was first offered!) Other than that, the meds I got took care of the other side effects like nausea and diarrhea. Overwhelming fatigue was the major hurdle for 2 months after I got home. But by May I was driving again, and that summer I kayaked and biked a bit, as well as walked at least a mile or 2 on most days.
My only leftover stuff from the multiple myeloma is neuropathy in my hands and feet ( from the Velcade) and nerve pain in my torso (from the 2 collapsed vertebrae that resulted in my diagnosis). I consider these conditions a small price to pay to have dodged the multiple myeloma bullet for now.
When relapse rears its ugly head, I would not hesitate to do a 2nd SCT if recommended by my doctors. I was able to store extra stem cells from the harvesting process and their "expiration date" is still a few years off. Even though my response to the inductive chemo was excellent, I saw the SCT as "insurance" to maintain remission as long as possible.
The uncertainty of this disease can be really anxiety-provoking. The good news is that new treatments are arriving almost every day it seems.
One more thing...I never considered myself vain, and in anticipation
of hair loss, I shaved my head the day before I entered the hospital. However, I didn't anticipate how cold it is in New England when one is bald! Next time I'll try to plan better...
The Beacon is a wonderful resource. Thanks to everyone who posts info/experiences.
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BevBac - Name: Bev Baccelli
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 59
Re: stem cell transplant
hi there...
i was just reading your article and found that it is a touching article...
my aunty has been diagnosed with multiple myeloma and has been given 6-12 months to live and we are desperate to find treatment, do you think that under going an autologous SCT is worth her while??
Re: stem cell transplant
Hi Mahmoud,
Can you tell us a bit more about your aunt, her diagnosis, and treatment? How old is she, and when was she diagnosed? Has she received any treatment yet?
One or more stem cell transplants are commonly recommended for "younger" myeloma patients (certainly those 65 and under, and sometimes patients around 70 if they are otherwise in good health). If your aunt is in that sort of age range, you should certainly talk with her doctor about whether she is a good candidate for a stem cell transplant.
Can you tell us a bit more about your aunt, her diagnosis, and treatment? How old is she, and when was she diagnosed? Has she received any treatment yet?
One or more stem cell transplants are commonly recommended for "younger" myeloma patients (certainly those 65 and under, and sometimes patients around 70 if they are otherwise in good health). If your aunt is in that sort of age range, you should certainly talk with her doctor about whether she is a good candidate for a stem cell transplant.
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Fred
Re: stem cell transplant
Mamoud,
If her doctor is giving that kind of diagnosis, she should go to a Cancer Treatment Center. If you can go to one that has a specializing group for Myeloma, like MD Anderdson in Houston Texas or the one in Arkansas also known for Myeloma treatment, it would be best!
Hugh
If her doctor is giving that kind of diagnosis, she should go to a Cancer Treatment Center. If you can go to one that has a specializing group for Myeloma, like MD Anderdson in Houston Texas or the one in Arkansas also known for Myeloma treatment, it would be best!
Hugh
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turbineman - Name: Hugh
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Jan 2006
- Age at diagnosis: 61
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