This forum posting ("NEJM article on results of the FIRST trial") caught my attention and made me want to share my multiple myeloma journey, since I was diagnosed some 15 months, ago.
I was diagnosed at 60 years of age with multiple myeloma. I started with Velcade for no longer than two months. It made me constantly ill and introduced me to the horrible world of neuropathy.
My oncologist switched me to Revlimid 25mg and dex 40mg. I was still being sick and my meds were cut back to 15mg and 20mg, respectively. I have been on this 'maintenance' for right at a year as of this writing.
My oncologist started me on Zometa, after my third bone break in a year, but it made me just as sick as the Velcade made me. I have quit the Zometa after the third IV.
I have a friend that is a MD, that did his residency at the Mayo Clinic in Rochester, MN., and he has been after me to go up there and get their opinion about my health and see what they possibly can do for me. After a year of him 'suggesting' I go up there (I'm in southwest Florida), I asked him to get me an appointment.
The greatest thing that has ever happened to me was meeting Dr. Rajkumar and the team he works with at the Mayo Clinic. I've never had a doctor spend so much time with me and experiencing his methodical approach to tackling my multiple myeloma. There is a huge difference between maintenance and being proactive and, fortunately, I got to experience the latter at the Mayo Clinic. He had me start my tests (blood work) the same day I first met him. I came back for a multitude of other tests in the next couple of days and after five days, I got to meet with Dr. Rajkumar to go over the results of all of my tests.
Currently, I have no trace of multiple myeloma in my bone marrow or blood. The PET scan came up with nothing, as well as the other tests. I am currently in complete remission. This has been very hard for me to accept (especially after not hearing this from my oncologist in Florida, except for hearing each month "Your numbers look good"), and you cannot imagine the emotional roller coaster I have been on since walking into the Mayo Clinic.
I had complained that after my dex wore off, I was ill from Sunday afternoon until the following Friday, when I took my dex again. He has cut my Revlimid down to 10 mg now. Hopefully, that will be low enough to not let me continue to be ill, yet enough in my system to continue fighting off the multiple myeloma. I cannot speak highly enough about my experience at the Mayo Clinic. Those folks rock.
I know that multiple myeloma is incurable and my expectations are for it to return. My plans are to have a stem cell harvest at the end of this month at the Mayo Clinic. The thought of a stem cell transplant scares me to death, though, and I continue to put it in the back of my mind, and hope my multiple myeloma will stay away for a while, where I don't have to make a decision on having a transplant in the near future.
I know as I get older, the transplant will be more difficult. Perhaps while I am back there at the end of the month, I will more than likely meet folks that have had a SCT, and that might ease my thoughts about it moving forward.
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My myeloma journey (and experience at Mayo Rochester)
Last edited by tropicdiver on Fri Sep 05, 2014 3:08 pm, edited 1 time in total.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
Thanks for introducing yourself, Bob. We're glad to hear that you've achieved a complete response to treatment and that you've been happy with Dr. Rajkumar.
As you may know, Dr. Rajkumar is one of the myeloma experts who writes a regular column for The Beacon. You can view a list of the articles we've published from him at this link.
As you may know, Dr. Rajkumar is one of the myeloma experts who writes a regular column for The Beacon. You can view a list of the articles we've published from him at this link.
Re: My myeloma journey (and experience at Mayo Rochester)
Wow. That's quite a story! I'm so glad you shared your story and that you found the health care specialists who could properly treat you. Just by sharing your story, you emphasize that often, we need to see a myeloma specialist and often times someone who's well-published. The best thing we can do is be proactive about our treatment and our healing. And by sharing your story you have likely helped many of us. Thank you!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: My myeloma journey (and experience at Mayo Rochester)
Dear Bob:
I thought about SCT as you do.
I was scared to death thinking about SCT. But then after one and a half year, I had a lot of problems. My bones were getting wronger, my blood scores were not good and so on. So I decided to get SCT.
It was done last May. I have been about five weeks in hospital. It was terrible!!! I have gotten all side effects possible. The doctors said they will never give me the SCT again.
But, dear Bob, the outcome was very good! My scores are normal know. And my body is feeling very good. And I am just starting to forget what happened in the hospital just like a mother forgets giving birth to her children.
All the best,
Elfriede
(in Germany)
I thought about SCT as you do.
I was scared to death thinking about SCT. But then after one and a half year, I had a lot of problems. My bones were getting wronger, my blood scores were not good and so on. So I decided to get SCT.
It was done last May. I have been about five weeks in hospital. It was terrible!!! I have gotten all side effects possible. The doctors said they will never give me the SCT again.
But, dear Bob, the outcome was very good! My scores are normal know. And my body is feeling very good. And I am just starting to forget what happened in the hospital just like a mother forgets giving birth to her children.
All the best,
Elfriede
(in Germany)
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Elfriede - Name: Elfriede
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2012
- Age at diagnosis: 57
Re: My myeloma journey (and experience at Mayo Rochester)
Bob
You can read about my outpatient autologous stem cell transplant at Mayo Clinic Rochester, just two months ago, in this forum discussion thread:
Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient)
I made the posts there while I was in Rochester. I was very lucky in terms of coping with the treatment, and I hope you will be, too. The docs, PAs, NPs, and nurses are the greatest -- you will be in good hands!
Dana
You can read about my outpatient autologous stem cell transplant at Mayo Clinic Rochester, just two months ago, in this forum discussion thread:
Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient)
I made the posts there while I was in Rochester. I was very lucky in terms of coping with the treatment, and I hope you will be, too. The docs, PAs, NPs, and nurses are the greatest -- you will be in good hands!
Dana
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: My myeloma journey (and experience at Mayo Rochester)
Bob,
I had a very good experience with my SCT as well. You can find updates that I made about my experience during the transplant in this forum thread:
"KimT's Stem Cell Transplant (Stanford, Inpatient)"
It's ok to be prepared that it might be hard. But don't assume it will be!
I had a very good experience with my SCT as well. You can find updates that I made about my experience during the transplant in this forum thread:
"KimT's Stem Cell Transplant (Stanford, Inpatient)"
It's ok to be prepared that it might be hard. But don't assume it will be!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: My myeloma journey (and experience at Mayo Rochester)
Thanks, everyone, for your comments and feedback.
As the days go by, I am feeling braver and braver about proceeding with my harvest and SCT.
Insurance to be filed on October 1st, when Blue Cross Blue Shield will accept Mayo's treatment request for me.
Not crazy about being in Minnesota during the winter, but I need to do what I need to do, especially since I am currently in complete remission and pretty much feeling better than I have since I was diagnosed some 15 months, ago. I figure since I am now 61, I need to get the SCT done, as I am not getting any younger and I sure want to get it done before the multiple myeloma decides to return again.
Bob
As the days go by, I am feeling braver and braver about proceeding with my harvest and SCT.
Insurance to be filed on October 1st, when Blue Cross Blue Shield will accept Mayo's treatment request for me.
Not crazy about being in Minnesota during the winter, but I need to do what I need to do, especially since I am currently in complete remission and pretty much feeling better than I have since I was diagnosed some 15 months, ago. I figure since I am now 61, I need to get the SCT done, as I am not getting any younger and I sure want to get it done before the multiple myeloma decides to return again.
Bob
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
Today, was the first day of the physical process of my stem cell harvest and transplant as an outpatient at the Mayo Clinic in Rochester, MN.
Have you ever felt brave and scared at the same time? I am starting to get over the scared part, but figure I will face my fear, again, when I receive my blast of chemo in another 10 or so days.
Today, I received my first two Neupogen shots in my belly. Easy peasy and no pain at all. The nurses at the Mayo are fantastic (as well as the doctors). Everyone I have dealt with in regards to all the tests that I have had, that has led me to today, have bent over backwards to help me and put my fears to rest. I have been hit with lots of information and am grateful for their expertise in leading me along with my journey fighting my multiple myeloma.
Currently, I am staying at the Gift of Life Transplant house just a 1/2 mile from the Mayo Clinic. This place is great for lodging,while going thru the harvest and transplant (I just checked in yesterday). I am required to have a caregiver with me while lodging at the GOL and I have a different friend or family member with me for each week of my journey, which is expected to be around six to eight weeks long. I have been up here about a week already, undergoing several tests to make sure I can handle the harvest and transplant, which I have been given the green light to proceed.
I will try my best to update my outpatient process for the harvest and transplant while up here in Rochester. I know I am not much of a writer, but hopefully I can help someone make that leap from dealing with multiple myeloma to fighting it. Any questions anyone might have, please don't hesitate to ask away.
Have you ever felt brave and scared at the same time? I am starting to get over the scared part, but figure I will face my fear, again, when I receive my blast of chemo in another 10 or so days.
Today, I received my first two Neupogen shots in my belly. Easy peasy and no pain at all. The nurses at the Mayo are fantastic (as well as the doctors). Everyone I have dealt with in regards to all the tests that I have had, that has led me to today, have bent over backwards to help me and put my fears to rest. I have been hit with lots of information and am grateful for their expertise in leading me along with my journey fighting my multiple myeloma.
Currently, I am staying at the Gift of Life Transplant house just a 1/2 mile from the Mayo Clinic. This place is great for lodging,while going thru the harvest and transplant (I just checked in yesterday). I am required to have a caregiver with me while lodging at the GOL and I have a different friend or family member with me for each week of my journey, which is expected to be around six to eight weeks long. I have been up here about a week already, undergoing several tests to make sure I can handle the harvest and transplant, which I have been given the green light to proceed.
I will try my best to update my outpatient process for the harvest and transplant while up here in Rochester. I know I am not much of a writer, but hopefully I can help someone make that leap from dealing with multiple myeloma to fighting it. Any questions anyone might have, please don't hesitate to ask away.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
I will follow your posts. I am praying each day for you and know that you will be victorious. You are remarkable to be able to do this while going thru treatment. God bless you Bob.
deb
deb
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daynak2002
Re: My myeloma journey (and experience at Mayo Rochester)
Bob,
I will continue to pray for you as well as your family and ones close with you, I told you when we met I would do anything for you and that still stands,
WAL
I will continue to pray for you as well as your family and ones close with you, I told you when we met I would do anything for you and that still stands,
WAL
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sonofanative
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