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Story: Peter - follicular lymphoma, allo SCT

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 2.

Initial period of Watch and Wait.

7/2001 - Signs of progression and need for treatment.

9/2001 - Extranodal disease found above one eye, therefore Stage 4.

12/2001 - Tx with Fludarbine-based regimen FMD X 4

6/2002 - Auto transplant with BEAM protocol

8/2002 - Ritxuan X 4 

Complete remission.

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 transplant.

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.

Best wishes,

Peter.

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
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