I have almost reached the one-year mark since being diagnosed with follicular lymphoma and smoldering multiple myeloma. I met with my oncologist last Thursday to discussed my recent blood work. He has been checking my blood every two months. I have to admit that all this is somewhat confusing. He did present my case in front of their tumor board to get a broader opinion as to start a treatment or continue to watch and wait. He did state that everyone had a different opinion and that we can continue to watch and wait or start a treatment plan. He did say that I would need treatment sooner or later and the decision would be whether to do it now or wait until my myeloma became active.
His treatment of choice was a stem cell transplant using rchop before and after the transplant. The one negative factor I have going against me is that I am missing the P53 gene. My lymphoma is growing but at a rate that is expected.
I will try to write down my blood values, but I am not very good with numbers. The values are
Kappa FLC - 12.06 (H) (Nov 12, 2015), 12.82 (H) (Sep 3, 2015), and 26.98 (H) (Aug 6, 2015)
Lambda FLC - 0.68 (Nov 12, 2015), 0.62 (Sep 3, 2015), and 0.86 (Aug 6, 2015).
Kappa/lambda FLC ratio - 17.74 (Nov 12, 2015), 20.68 (Sep 3, 2015), and 31.37 (Aug 6, 2015)
Beta % Serum was 11.0, Gamma % was 12.0, Paraprotein was 0.47, Interpretation SEP was spike probably M, IgG was 822, IgM was 31 (L), and IgA was 104. These values were on November 19, 2015. I do not have the info from January 21, 2016, be he did say that they have hardly changed at all if any.
I have had 3 PET scans, 6 CT scans, and a full skeletal X-Ray with in the last year with no signs of lesions on any bones.
I would appreciate any input from anyone on these results and also I would like input on whether I should go ahead with the stem cell transplant or wait until the myeloma goes active. He did say that the one thing that did worry him was if the lymphoma and myeloma got aggressive at the same time.
I would appreciate any help at this time. I need to make the right decision. Thanks.
I guess I should add that I am 65 years old and in good health.
Thanks again.
Forums
Re: Should I proceed with a stem cell transplant?
Hi Gary,
Did you ever seek out a second opinion at a different institution other than the University of Kansas? Given this dual diagnosis and what's at stake for you, I think most folks on this forum would strongly recommend making a trip to another top facility like the Mayo to seek out a second opinion from a myeloma/lymphoma specialist. I think you will find that the treatment philosophies can often vary from institution to institution.
Did you ever seek out a second opinion at a different institution other than the University of Kansas? Given this dual diagnosis and what's at stake for you, I think most folks on this forum would strongly recommend making a trip to another top facility like the Mayo to seek out a second opinion from a myeloma/lymphoma specialist. I think you will find that the treatment philosophies can often vary from institution to institution.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I proceed with a stem cell transplant?
Yes, I am planning on getting a second opinion before deciding to start treatment. The Mayo Clinc was one of two locations on my list, the other being MD Anderson. I am not sure if it is allowed on this forum but can someone supply a name of a doctor at Mayo or MD Anderson that would be a good one to check with. If this is against the forum"s rules then I apologize for the mistake.
Re: Should I proceed with a stem cell transplant?
Hey Gary,
It's perfectly fine for folks to recommend specific doctors on this forum. Dr. Shah and Dr. Kapoor of MD Anderson and the Mayo Clinic (respectively) are regular advisers on this forum. But I will defer to those folks on the forum who have personal experience at each of those facilities to make specific recommendations. Also, the specific choice of the appropriate doctor will also likely be influenced by the fact that you have lymphoma in addition to smoldering multiple myeloma.
It's perfectly fine for folks to recommend specific doctors on this forum. Dr. Shah and Dr. Kapoor of MD Anderson and the Mayo Clinic (respectively) are regular advisers on this forum. But I will defer to those folks on the forum who have personal experience at each of those facilities to make specific recommendations. Also, the specific choice of the appropriate doctor will also likely be influenced by the fact that you have lymphoma in addition to smoldering multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I proceed with a stem cell transplant?
Thanks Multibilly, I appreciate the information. It is really a big decision for me and I also know that it is an important one. Thanks again for the help and information. If any one else has some input, I would appreciate all the help I can get.
Thanks again. I will definitely be getting a second opinion before proceeding.
Thanks again. I will definitely be getting a second opinion before proceeding.
Re: Should I proceed with a stem cell transplant?
Hi Pappystrout,
My wife, age 62, has the del(17p) chromosomal abnormality, which means she only has one copy of P53 and therefore a potentially poorer prognosis. When they discovered her M-spike, her plasma levels reached 60%, so she was well on her way to multiple myeloma. She had no other symptoms normally considered to be labelled with multiple myeloma.
However, with a 90% chance of developing multiple myeloma, we decided on induction therapy (4 mos of cyclophosphamide, Velcade, and dexamethasone – CyBorD) followed by an autologous stem cell transplant (ASCT). Due to her cytogenetics, she'll have a tandem transplant about 3 months after the first one.
We have an acquaintance also with del(17p) (and therefore only 1 copy of p53) and he's going on 10 years.
Wish you all the best in your decision.
My wife, age 62, has the del(17p) chromosomal abnormality, which means she only has one copy of P53 and therefore a potentially poorer prognosis. When they discovered her M-spike, her plasma levels reached 60%, so she was well on her way to multiple myeloma. She had no other symptoms normally considered to be labelled with multiple myeloma.
However, with a 90% chance of developing multiple myeloma, we decided on induction therapy (4 mos of cyclophosphamide, Velcade, and dexamethasone – CyBorD) followed by an autologous stem cell transplant (ASCT). Due to her cytogenetics, she'll have a tandem transplant about 3 months after the first one.
We have an acquaintance also with del(17p) (and therefore only 1 copy of p53) and he's going on 10 years.
Wish you all the best in your decision.
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Should I proceed with a stem cell transplant?
Thanks, SK1, for the info.
Multibilly - I have made an appointment with Dr. Shah at MD Anderson for a second opinion before starting any treatment. This appointment is in June. I think that I should be fine till then. I will be having blood work done in March with my oncologist and will see him the following week. If there are changes then I will probably move up my appointment time with Dr. Shah. If not, then I will just wait till June.
I appreciate all the replies and help with this time in my life. Except for feeling tired, I usually feel pretty good. I do have a lot of problems sleeping, but that has been going on for over 3 years. I really appreciate being able to "open up" on this forum. Sometimes you just need to talk to someone who has been there.
Multibilly - I have made an appointment with Dr. Shah at MD Anderson for a second opinion before starting any treatment. This appointment is in June. I think that I should be fine till then. I will be having blood work done in March with my oncologist and will see him the following week. If there are changes then I will probably move up my appointment time with Dr. Shah. If not, then I will just wait till June.
I appreciate all the replies and help with this time in my life. Except for feeling tired, I usually feel pretty good. I do have a lot of problems sleeping, but that has been going on for over 3 years. I really appreciate being able to "open up" on this forum. Sometimes you just need to talk to someone who has been there.
Re: Should I proceed with a stem cell transplant?
SK1,
I am hoping for the best outcome for your wife. If she has already started her treatment, how is she coping with the side effects. That is one part of the transplant that scares me a little.
Wishing her well and keeping her in my prayers.
I am hoping for the best outcome for your wife. If she has already started her treatment, how is she coping with the side effects. That is one part of the transplant that scares me a little.
Wishing her well and keeping her in my prayers.
Re: Should I proceed with a stem cell transplant?
Hi Pappystrout,
She's Day 6 after 2nd transplant. Some nausea, eating and drinking little as a result. Her oncologist told her before the 1st transplant the entire procedure would become a distant memory. She was correct.
If it's any help to you, as soon as her oncologist told her she could start her 2nd transplant anytime, my wife was ready to start the next day.
The benefits should vastly outweigh the short-term discomfort.
Wish you well whatever your decision!
She's Day 6 after 2nd transplant. Some nausea, eating and drinking little as a result. Her oncologist told her before the 1st transplant the entire procedure would become a distant memory. She was correct.
If it's any help to you, as soon as her oncologist told her she could start her 2nd transplant anytime, my wife was ready to start the next day.
The benefits should vastly outweigh the short-term discomfort.
Wish you well whatever your decision!
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Should I proceed with a stem cell transplant?
Thanks SK1. The friend you were speaking of going on I believe 9 or 10 years, was this after a transplant and was it a tandem transplant? Thanks, and I am so glad that your wife is doing so well. It gives me a little more confidence knowing that she handled it so well. Please let me know how things go after her second transplant and if she received the results her doctor was expecting.
Thanks again.
Thanks again.
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