My name is Ryan. I am only 33 years old and I just got diagnosed on March 27, 2106 with myeloma. I'm really scared.
Are there any others on here who have myeloma and can help encourage me?
Forums
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mrgrabau - Name: Ryan
- Who do you know with myeloma?: I was diagnosed
- When were you/they diagnosed?: March 27 2016
- Age at diagnosis: 33
Re: Just diagnosed with multiple myeloma - 33 years old
I was diagnosed at 32 years old. I am 41 now and doing a stem cell transplant on Tuesday. Stay the course. I always say that it is a blessing to be diagnosed younger, as your body can handle the recovery better.
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Tigerboy74 - Name: Mike
- Who do you know with myeloma?: Me and few others
- When were you/they diagnosed?: 2007
- Age at diagnosis: 32
Re: Just diagnosed with multiple myeloma - 33 years old
Hello Ryan:
I am very sorry to hear your diagnosis, which is very young for multiple myeloma. Can you please share, was it active myeloma, smoldering, or MGUS?
In either case, there is a lot to learn when you are first confronted with this, and this site has a lot of the resources to help you come up to speed.
Good luck to you. JPC
I am very sorry to hear your diagnosis, which is very young for multiple myeloma. Can you please share, was it active myeloma, smoldering, or MGUS?
In either case, there is a lot to learn when you are first confronted with this, and this site has a lot of the resources to help you come up to speed.
Good luck to you. JPC
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JPC - Name: JPC
Re: Just diagnosed with multiple myeloma - 33 years old
Ryan,
Sorry to see you joining the club, but welcome to the forum nonetheless. JPC asked an important question regarding just which stage you were diagnosed with. Once folks have more details on your exact diagnosis, folks on this forum can better hep you.
I also note that you are in Jacksonville, FL. The Mayo clinic in Jacksonville has Dr. Asher Chanan-Khan on their staff, who is a well-respected multiple myeloma specialist. I might suggest seeking out a second opinion from the Mayo, if you aren't already being seen there.
Sorry to see you joining the club, but welcome to the forum nonetheless. JPC asked an important question regarding just which stage you were diagnosed with. Once folks have more details on your exact diagnosis, folks on this forum can better hep you.
I also note that you are in Jacksonville, FL. The Mayo clinic in Jacksonville has Dr. Asher Chanan-Khan on their staff, who is a well-respected multiple myeloma specialist. I might suggest seeking out a second opinion from the Mayo, if you aren't already being seen there.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with multiple myeloma - 33 years old
I honestly do not know what state I am in as I have yet to go see my specialist. I get to see him Thursday next week.
I was diagnosed last week when my back went out and I got rushed to the ER. They found lesions in my back. The oncologist that came and saw me told me that I was in Stage 3, and that when I come to see him this Thursday, I would be getting a pill and a shot and then that's what chemo would be.
I'm still learning about everything. I just got released from the hospital yesterday. I happen to have an appetite. I've lost 40 pounds and using the bathroom has been weird.
They did a bone marrow biopsy while they were doing my back surgery, but my specialist said that they usually takes 3 weeks for the test to come back. He told me that I have a very strong myeloma, it has been kicking my butt.
Yes I heard about the doctor at the Mayo Clinic in Jacksonville, but my insurance does not cover him.
I was diagnosed last week when my back went out and I got rushed to the ER. They found lesions in my back. The oncologist that came and saw me told me that I was in Stage 3, and that when I come to see him this Thursday, I would be getting a pill and a shot and then that's what chemo would be.
I'm still learning about everything. I just got released from the hospital yesterday. I happen to have an appetite. I've lost 40 pounds and using the bathroom has been weird.
They did a bone marrow biopsy while they were doing my back surgery, but my specialist said that they usually takes 3 weeks for the test to come back. He told me that I have a very strong myeloma, it has been kicking my butt.
Yes I heard about the doctor at the Mayo Clinic in Jacksonville, but my insurance does not cover him.
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mrgrabau - Name: Ryan
- Who do you know with myeloma?: I was diagnosed
- When were you/they diagnosed?: March 27 2016
- Age at diagnosis: 33
Re: Just diagnosed with multiple myeloma - 33 years old
Hi Ryan,
It certainly sounds like you have symptomatic multiple myeloma.
You might consider poking around this link,
https://myelomabeacon.org/resources/treatment-centers/
for facilities with multiple myeloma specialists in Florida and Georgia that may accept your insurance. You can potentially meet with a specialist in another city and then have him remotely guide your treatment with your local oncologist in Jacksonville.
I don't know your economic situation, but you might also consider simply going to the Mayo Clinic and paying out of pocket for at least one consult with a top specialist before going too far down the treatment path (a consult would be less than $200).
The drugs you would be taking could very well be Revlimid and Velcade, but it's hard to tell from what you've stated here (there are many drugs used to treat multiple myeloma). I would also be asking about getting on to a bisphosphonate such as Zometa (this is delivered via an IV infusion) to help with strengthening your bones, since they have undoubtedly been weakened by the lesions you developed.
In any case, you should be feeling quite a bit better in the near future. The modern classes of multiple myeloma drugs usually work miracles after a few sessions. There are many folks on this site who have developed multiple myeloma and have done quite well with their treatments for extended periods of time. As you get your head more around this disease and your situation, folks can help you with future next steps and treatment choices.
It certainly sounds like you have symptomatic multiple myeloma.
You might consider poking around this link,
https://myelomabeacon.org/resources/treatment-centers/
for facilities with multiple myeloma specialists in Florida and Georgia that may accept your insurance. You can potentially meet with a specialist in another city and then have him remotely guide your treatment with your local oncologist in Jacksonville.
I don't know your economic situation, but you might also consider simply going to the Mayo Clinic and paying out of pocket for at least one consult with a top specialist before going too far down the treatment path (a consult would be less than $200).
The drugs you would be taking could very well be Revlimid and Velcade, but it's hard to tell from what you've stated here (there are many drugs used to treat multiple myeloma). I would also be asking about getting on to a bisphosphonate such as Zometa (this is delivered via an IV infusion) to help with strengthening your bones, since they have undoubtedly been weakened by the lesions you developed.
In any case, you should be feeling quite a bit better in the near future. The modern classes of multiple myeloma drugs usually work miracles after a few sessions. There are many folks on this site who have developed multiple myeloma and have done quite well with their treatments for extended periods of time. As you get your head more around this disease and your situation, folks can help you with future next steps and treatment choices.
Last edited by Multibilly on Fri Apr 08, 2016 9:04 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with multiple myeloma - 33 years old
Very sorry why you joined us, but you came to a great place.
I was dx'ed end of last year, and it's a lot to absorb. I'm still on a steep learning curve, and from the beginning knew I was going to make some mistakes, and wished I could have the benefit of hindsight when making decisions!
But, one thing I have learned for sure is the importance of seeing a myeloma specialist. I personally would not have wanted to begin treatment without having done that. So consider the advice Multibilly (one of the smartest posters on this forum!) gave you about the best advice you could get at this stage.
I was dx'ed end of last year, and it's a lot to absorb. I'm still on a steep learning curve, and from the beginning knew I was going to make some mistakes, and wished I could have the benefit of hindsight when making decisions!
But, one thing I have learned for sure is the importance of seeing a myeloma specialist. I personally would not have wanted to begin treatment without having done that. So consider the advice Multibilly (one of the smartest posters on this forum!) gave you about the best advice you could get at this stage.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Just diagnosed with multiple myeloma - 33 years old
Hi Ryan
I am sorry to hear that you are part of our club. I live in Boca and back in December I was in Seattle on business and ended up in the hospital for a week because I had such painful spasms that I could not move. Ended up being 90% compressed L3, so I had to have spine surgery and that's when they found the myeloma. On February 2nd I started the Revlimid and Velcade.
I completely understand how scared you are right now because I was the same, being an active 46 year old that never had any medical issues. In going through the process, I can tell you that, while the initial couple of weeks of therapy did make me feel tired, soon after a couple of weeks, I was able to be active again and walk 5+ miles per day. Whatever you do, if you are physically able, keep as active as possible, because it will help you recover quicker going forward.
Being 33, your body should respond very well. I was told by my doctor that the stages for myeloma mean less than a tumor type cancer. As soon as I started therapy, my numbers dropped very quickly, and I am right now to the point of having a stem cell transplant at the end of the month.
As everyone on the forum will tell you ... go to a myeloma specialist. That is very important
I wish you the best.
AC
I am sorry to hear that you are part of our club. I live in Boca and back in December I was in Seattle on business and ended up in the hospital for a week because I had such painful spasms that I could not move. Ended up being 90% compressed L3, so I had to have spine surgery and that's when they found the myeloma. On February 2nd I started the Revlimid and Velcade.
I completely understand how scared you are right now because I was the same, being an active 46 year old that never had any medical issues. In going through the process, I can tell you that, while the initial couple of weeks of therapy did make me feel tired, soon after a couple of weeks, I was able to be active again and walk 5+ miles per day. Whatever you do, if you are physically able, keep as active as possible, because it will help you recover quicker going forward.
Being 33, your body should respond very well. I was told by my doctor that the stages for myeloma mean less than a tumor type cancer. As soon as I started therapy, my numbers dropped very quickly, and I am right now to the point of having a stem cell transplant at the end of the month.
As everyone on the forum will tell you ... go to a myeloma specialist. That is very important
I wish you the best.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Just diagnosed with multiple myeloma - 33 years old
I go to my specialist Thursday. He is at MD Anderson and is a myeloma specialist.
Right now I am just losing so much weight. I'm literally skin and bones. That's what is so hard cause it makes me look so sick so when I see myself if hurts my spirits and I don't really sleep that well as my body does not let me. My appointment with MD Anderson isn't until Thursday and I sometimes feel like I won't make it that far the way I'm losing weight and so weak altogether.
Right now I am just losing so much weight. I'm literally skin and bones. That's what is so hard cause it makes me look so sick so when I see myself if hurts my spirits and I don't really sleep that well as my body does not let me. My appointment with MD Anderson isn't until Thursday and I sometimes feel like I won't make it that far the way I'm losing weight and so weak altogether.
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mrgrabau - Name: Ryan
- Who do you know with myeloma?: I was diagnosed
- When were you/they diagnosed?: March 27 2016
- Age at diagnosis: 33
Re: Just diagnosed with multiple myeloma - 33 years old
Ryan:
I echo the many posters advice - see a myeloma specialist. See if your insurance would cover Dr. Hoffman at the Sylvester Center in Miami? It is common for people to see a local hematologist / oncologist AND a myeloma specialist. They will see the local hematologist / oncologist more often, but the myeloma specialist will correspond on treatment recommendations with that doctor. They call it co-managing.
Your local hematologist / oncologist may tell you it is not necessary to see a specialist. It IS!
All of this is overwhelming. I found this forum and it helped so much. Also, see if there is a local myeloma support group in your area. I think there is one called the North Florida Myeloma Support Group in the Jacksonville area.
My husband was diagnosed Stage 3. As others said, the Stage is not an indication of your prognosis like other cancers.
My husband has responded well to treatment. He had Revlimid, Velcade, and dexamethasone for 6 cycles and a stem cell transplant outpatient at Moffitt.
There are some other things you want to know when you meet with your doctor. I don't want to overwhelm you, but I am listing a few. I am still learning so I can't explain everything.
Things to know:
I echo the many posters advice - see a myeloma specialist. See if your insurance would cover Dr. Hoffman at the Sylvester Center in Miami? It is common for people to see a local hematologist / oncologist AND a myeloma specialist. They will see the local hematologist / oncologist more often, but the myeloma specialist will correspond on treatment recommendations with that doctor. They call it co-managing.
Your local hematologist / oncologist may tell you it is not necessary to see a specialist. It IS!
All of this is overwhelming. I found this forum and it helped so much. Also, see if there is a local myeloma support group in your area. I think there is one called the North Florida Myeloma Support Group in the Jacksonville area.
My husband was diagnosed Stage 3. As others said, the Stage is not an indication of your prognosis like other cancers.
My husband has responded well to treatment. He had Revlimid, Velcade, and dexamethasone for 6 cycles and a stem cell transplant outpatient at Moffitt.
There are some other things you want to know when you meet with your doctor. I don't want to overwhelm you, but I am listing a few. I am still learning so I can't explain everything.
Things to know:
- What is your m-spike #? (You want this at 0)
- What type of myeloma? (IgA kappa, IgG lambda, etc.) (Once you know, you will watch your IgA / IgG and your kappa or your lambda free light chain numbers.)
- Do you have any chromosomal abnormalities?
- How much bone involvement did you have? (You are waiting 3 weeks for results from biopsy. This seems long to me).
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