Hi I have posted my story on here before, but in case you missed it:
I am currently 35, I was diagnosed when I was 32. I did chemo (Velcade/high dose pulsed dex / cytoxan) and then a auto transplant. I have been in remission for three years now!
I now go to the clinic every three months for follow up. Consists of a blood work (M-Spike, lites,freelites, CBC) and a brief meeting with the DR. where she says I continue to be fine.
I am starting to feel some symptoms that I felt before my diagnosis, but since my M-spike etc is "normal" I am told it can't be the multiple myeloma coming back. Yet I am constantly worrried, and waiting for something to happen. I find being in remission is very hard for me. When I was sick I knew what I was fighting, but now I'm feeling health anxiety again, that something is wrong and dr's are missing it.
My most resent worry is because I now have an annoying muscle twitch problem, that I had before my diagnosis, which went away from my treatment, only to reapars a month or so ago. It is called myoclonus and it is like getting startled and the "jump" feeling. Dr. said she had never heard of this with multiple myeloma, so I am feeling like a freak again...
My diagnsosis took a very long time and dozens of doctors to find out what was wrong with me
Forums
Re: What is your follow up routine- if you are in remission
I was diagnosed in '09, auto stem cell in the spring of '10. I'm not on any maintenance and I see the hematologist every 3 months and have a CBC, CMP, protein electrphoresis, kappa/lambda light chains and 24 hour urine. I have Bence-Jones multiple myeloma.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: What is your follow up routine- if you are in remission
HI my hubby has been on Revlimid 10mg for going on 10 months this month and is on a 21 days on / 7 days off a month protocol that will continue for 24 months. He takes lots of other medications to address the pain and neuropathy issues as well as blot clots he had developed during treatment and low hgb, iron and other meds to support other deficiencies. They do bisphosphonate infusions now every few months vs. every month as well. Each month they do multi-panel labs for cbc, liver, kidney, other functions and the light chain, lambda etc. and monitor glucose, heart, and bp as well as his physical and cognitive changes if any. I ask for a trailing m-spike number each month of treatment and so far it is still in CR which is good news for the time being but the internal ratios and numbers sometimes edge up a bit so I am keeping my fingers crossed for the longest possible time till relapse. But with the amount of detailed testing they do and number of panels with the blood work, they would know early on when there was a change that may require additional drug combinations.
Hope that helps.
KP
Hope that helps.
KP
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Catalystmom - Name: Kpatel
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 49
Re: What is your follow up routine- if you are in remission
My mom sends her blood in for labs every month. She sees her local oncologist every 6 weeks, and every 6 months she goes to see her myeloma specialist. At the specialist's institution, a more extensive blood panel is done, BM is analyzed, as well as PET/MRI. Sometimes it's just PET or MRI.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: What is your follow up routine- if you are in remission
In addition to what you are having done with labs, once a year bone imaging is also reasonable. In addition, any new bone related symptoms should be investigated with imaging. I also include 24 hour urine collection for protein electrophoresis and immunofixation.
Your feelings about being on observation are common among patients. There is great anxiety about "not doing something." If your symptoms that were related to disease in the past are returning, perhaps closer monitoring could be considered but since the labs are in good shape, continuing to monitor as your and your doctor are is reasonable.
all the best.
Your feelings about being on observation are common among patients. There is great anxiety about "not doing something." If your symptoms that were related to disease in the past are returning, perhaps closer monitoring could be considered but since the labs are in good shape, continuing to monitor as your and your doctor are is reasonable.
all the best.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
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