Today marks exactly three years since I
underwent a matched sibling (actually in my case it was a 'double'
cousin) reduced intensity allo transplant. As you probably know,
three years is the somewhat arbitrary milestone after which a
patient may begin to hope that there will be no further relapse. So
I thought it might be of interest to post my experience on
lymphomation because, at least in my case, it was quite bearable and
I think it offers genuine hope of very long remission, if not cure.
I know that you are suspicious of personal
testimonials particularly those used to advertise otherwise untested
medications and I wholeheartedly agree with this stance. So I
thought I should write to you personally first and see if you think
it is suitable to post my treatment experience.
Here is a brief summary of that experience:
12/1999 - Dx follicular lymphoma Grade 1, Stage
Initial period of Watch and Wait.
7/2001 - Signs of progression and need for
9/2001 - Extranodal disease found above one
eye, therefore Stage 4.
12/2001 - Tx with Fludarbine-based regimen FMD
6/2002 - Auto transplant with BEAM protocol
8/2002 - Ritxuan X 4
9/2008 - Relapse with widespread disease and
lymphoma now Grade 2.
10/2008 - Tx with Rituxan X 4
12/2008 - CEOP protocol X 4
4/2009 - After only partial response, tx halted
5/2009 - Tx - Zevalin
7/2009 - Only partial response. Allo transplant
regarded as only remaining option.
8/2009 - Tx - ESHAP (administered via
continuous drip for 5 consecutive days) X 2
10/2009 - Good objective response. Cleared for
11/2009 - Tx - Fludarabine + total body
irradiation + transplant
I have had no further treatment since. A PET
scan some months later could not find any evidence of disease. Blood
counts soon returned to normal and have stayed there (including
LDH). I did have one bout of shingles, but this was successfully
dealt with. Otherwise, I have mild GvHD (dry eyes, nose and mouth).
My medication was gradually reduced. I am now only taking the
antibiotic, Septrin, and hope to discontinue that soon.
However, I have not had a scan since 2010. I
have already had way more than 10. Instead, I have had a couple of
chest x-rays and a liver ultrasound. They were all clear.
I should emphasize that I was extremely lucky
to find a perfect match in my 'double' cousin. We share all four
grandparents, thanks to my father's brother marrying my mother's
sister. 8 alleles were tested and all of them matched.
I have posted from time to time in the past, as
I went through various treatments and sought advice and support. I
am grateful for all the help I have received through lymphomation.
If you think this information might be of interest and help, or if
you would like me to elaborate further, just let me know. I leave it
up to you.
Anyway, I would like to take the opportunity to
thank you (again) for the great support lymphomation provides. I
think it is truly a lifesaver.