Hi F cancer,
I agree with Multibilly, given such relatively low numbers and age on your side you do have a larger amount of choices.
My situation is very similar to yours feeling great, fit and seemingly healthy. However my 2 bone marrow biopsies showed 6% and then 3% respectively, the lower count coming after a partial rib removal to get rid of a plasmacytoma 7cm x 3cm.
I then moved onto 16 weeks of CyBorD, which wasn't much of an issue other than mild nausea and peripheral neuropathy.
The decision to start the chemo came after finding another 3 lesions 2 on my spine and another on my sternum, with the rib removal site showing extramedullary plasmacytoma.
I was pretty hesitant about and struggled a little throughout with the concept of putting chemo into my otherwise healthy body. I've bitten the bullet and start ASCT in January and hope to get some good results.
Maybe one option for you would be to have a stem cell harvest while you marrow and stem cells are in good condition pre chemo etc, and keep that option up your sleeve if you decide to pursue it later.
I guess the main point of my rambling is, you don't need to have high bone marrow activity for damage to occur quickly, and getting some stem cells frozen early gives you more options and time down the track.
By the way do you know what chemo regimen they were looking at for you?
Forums
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Not really convinced I should start treatment
The game plan is to freeze my stem cells after my initial chemo treatment of Revlimid/Velcade/dex and a preventative herpes pill, which I started two days ago. My doctor is projecting 3- 4 cycles.
Velcade is twice a week in week one then once a week for 2 weeks then a week off. Revlimid is daily for 6 days over 3 weeks then a week off and dex is taken with every Velcade shot. I heard they are coming out with a pill form of Velcade.
My initial history was that they found a plasmacytoma on my L3 during a MRI which the biopsy confirmed kappa protein. I went in for MRI thinking I had kidney stones, boy was I wrong ! I then had a single radio-surgery zapping the small tumor and confirming it was deleted. Then I followed up with kyphoplasty which was the best thing I had done as it got rid of all my back pain.
To see if I had just a plasmacytoma, they did a bone marrow biopsy and it showed 10-12% with Lambda protein which was different than my L3 result making me biclonal which is very rare but according to everything I've read, not a worse diagnosis. I am definitely freezing my stem cells at the end of my cycles pending the lowering of my current M spike which is just over 1.12. (0.50 lambda and 0.62 kappa). In February my M-spike was 1.04. FISH panel was normal.
I am still investigating the pros and cons of rushing into a ASCT or waiting until we see how long my numbers stay stable after the initial therapy especially considering I have no other health issues.
Velcade is twice a week in week one then once a week for 2 weeks then a week off. Revlimid is daily for 6 days over 3 weeks then a week off and dex is taken with every Velcade shot. I heard they are coming out with a pill form of Velcade.
My initial history was that they found a plasmacytoma on my L3 during a MRI which the biopsy confirmed kappa protein. I went in for MRI thinking I had kidney stones, boy was I wrong ! I then had a single radio-surgery zapping the small tumor and confirming it was deleted. Then I followed up with kyphoplasty which was the best thing I had done as it got rid of all my back pain.
To see if I had just a plasmacytoma, they did a bone marrow biopsy and it showed 10-12% with Lambda protein which was different than my L3 result making me biclonal which is very rare but according to everything I've read, not a worse diagnosis. I am definitely freezing my stem cells at the end of my cycles pending the lowering of my current M spike which is just over 1.12. (0.50 lambda and 0.62 kappa). In February my M-spike was 1.04. FISH panel was normal.
I am still investigating the pros and cons of rushing into a ASCT or waiting until we see how long my numbers stay stable after the initial therapy especially considering I have no other health issues.
Re: Not really convinced I should start treatment
Thanks for providing more information, F Cancer.
I'm no doctor, but it seems like your M-Spike has been relatively stable since diagnosis.
I was in a similar situation when first diagnosed with a solitary plasmacytoma in December of 2010, save for the fact that I had no bone marrow involvement (from what they were able to see). The presence of the monoclonal gammopathy persisted post-radiation, but I was able to live without treatment until the disease became active again in December of 2014. During that four-year period, my M-Spike fluctuated between .7 and .9.
That information may or may not help you. If anything, though, it demonstrates that in some cases the best action is inaction. Again, only your doctor(s) know what's best. Just thought I would share to offer a different experience.
Let us know how everything goes!
I'm no doctor, but it seems like your M-Spike has been relatively stable since diagnosis.
I was in a similar situation when first diagnosed with a solitary plasmacytoma in December of 2010, save for the fact that I had no bone marrow involvement (from what they were able to see). The presence of the monoclonal gammopathy persisted post-radiation, but I was able to live without treatment until the disease became active again in December of 2014. During that four-year period, my M-Spike fluctuated between .7 and .9.
That information may or may not help you. If anything, though, it demonstrates that in some cases the best action is inaction. Again, only your doctor(s) know what's best. Just thought I would share to offer a different experience.
Let us know how everything goes!
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dustydenimdad - Name: Paul Garcia
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2010
- Age at diagnosis: 24
Re: Not really convinced I should start treatment
I too am being treated at Mt Sinai. Diagnosed a year ago, barely noticed I had cancer, in remission as of last June, and it came back last week. New chemo regimen, some radiation, and doing stem cell transplant next month. (Had harvest last February.)
I am not a doctor, and don't play one on TV. But I can read the blood tests and know how I feel. I feel great and blood tests are just numbers on a page. My default position is always do nothing. But in this case, action was necessary. Let Steve Jobs go herbal. I am OK with science, despite my utter lack of understanding much of it, despite it being beaten into my head during four years at a local math & science high school, Stuyvesant.
Happy to see the other Mt Sinai folks in person some time. These forums are fantastic. But in my experience seeing and talking to people in the same rotten boat as I am is even better.
I go to Gilda's Club down on Houston St. near the Film Forum to a blood cancer group that meets last Thursday of every month. I am hardly Mr. Touchy Feely and Let's Share Our Thoughts. But support groups - online and in person - really have been of help.
To hear others with the same concerns - Should I start treatment? - and to really talk about it is so enlightening.
Or I invite folks nearby to message me and we can sit in the Ruttenberg lobby at 1470 Madison and drink coffee and compare notes.
I am not a doctor, and don't play one on TV. But I can read the blood tests and know how I feel. I feel great and blood tests are just numbers on a page. My default position is always do nothing. But in this case, action was necessary. Let Steve Jobs go herbal. I am OK with science, despite my utter lack of understanding much of it, despite it being beaten into my head during four years at a local math & science high school, Stuyvesant.
Happy to see the other Mt Sinai folks in person some time. These forums are fantastic. But in my experience seeing and talking to people in the same rotten boat as I am is even better.
I go to Gilda's Club down on Houston St. near the Film Forum to a blood cancer group that meets last Thursday of every month. I am hardly Mr. Touchy Feely and Let's Share Our Thoughts. But support groups - online and in person - really have been of help.
To hear others with the same concerns - Should I start treatment? - and to really talk about it is so enlightening.
Or I invite folks nearby to message me and we can sit in the Ruttenberg lobby at 1470 Madison and drink coffee and compare notes.
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Not really convinced I should start treatment
F . Cancer,
We understand your concerns, ours were similar. In our case we started with a cancer load similar to yours, but treatment was delayed because of an outbreak of shingles forced us to delay upfront testing due to the risks to other patients at the treatment center.
In our case, anemia set in fast. We intended to just start with Rd because I was concerned about about the side effects of RVd, but due to a delay in getting screened for Revlimid we started 1st cycle with dex only while on vacation in the Philippines.
I know, I can hear it now, "you took your wife to a third-world country when her immune system is crashed???" Worked out okay. Can you say cleanliness was the order of the day; l decontaminated our house every 3 days and masked up in public, etc. etc.
Back to the question though. The dex only treatment stopped the progression enough so that her LDH numbers returned to normal and her HGB recovered from 8.0 to 9.5. Next 2 cycles added Revlimid. Blew it away! Her HGB returned to normal, all Ig numbers recovered but slightly low, and M-protein dropped to 0.5.
This was a case where the lab tests ordered were not keeping up with the response and decision loop. Kinda pissed me off. One specialist was insistent on adding Velcade to mix but I don't think he'd seen all the data at the time. You have to watch that if you are having tests done at one center and consulting at a transplant center.
The next two cycles with Velcade didn't really do much. M-protein dropped to 0.3 and actually depressed her Ig numbers slightly. I think she was already reaching a plateau with her response.
In our case, we are going to do the transplant. The biggest factor is her age. This will be the healthiest starting point for her. If she was younger, we would've probably done the harvest and hold trick.
Best of luck!
We understand your concerns, ours were similar. In our case we started with a cancer load similar to yours, but treatment was delayed because of an outbreak of shingles forced us to delay upfront testing due to the risks to other patients at the treatment center.
In our case, anemia set in fast. We intended to just start with Rd because I was concerned about about the side effects of RVd, but due to a delay in getting screened for Revlimid we started 1st cycle with dex only while on vacation in the Philippines.
I know, I can hear it now, "you took your wife to a third-world country when her immune system is crashed???" Worked out okay. Can you say cleanliness was the order of the day; l decontaminated our house every 3 days and masked up in public, etc. etc.
Back to the question though. The dex only treatment stopped the progression enough so that her LDH numbers returned to normal and her HGB recovered from 8.0 to 9.5. Next 2 cycles added Revlimid. Blew it away!
Her HGB returned to normal, all Ig numbers recovered but slightly low, and M-protein dropped to 0.5. This was a case where the lab tests ordered were not keeping up with the response and decision loop. Kinda pissed me off. One specialist was insistent on adding Velcade to mix but I don't think he'd seen all the data at the time. You have to watch that if you are having tests done at one center and consulting at a transplant center.
The next two cycles with Velcade didn't really do much. M-protein dropped to 0.3 and actually depressed her Ig numbers slightly. I think she was already reaching a plateau with her response.
In our case, we are going to do the transplant. The biggest factor is her age. This will be the healthiest starting point for her. If she was younger, we would've probably done the harvest and hold trick.
Best of luck!
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
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