Pam Neff

First post: May 30, 2008 Latest post: Oct 1, 2017
Welcome family and friends! Most of you are aware that I was diagnosed with Non-Hodgkin's Lymphoma on May 27, 2008. As I make my on this journey to recovery, your prayers and support are so very much appreciated. I remain positive and optimistic that with treatment, we can put this terrible disease into remission.

Many of you are probably wondering how this all came about. I, too, have been left wondering. Throughout my pregnancy with our baby Sarah, I felt fine. The pregnancy was fairly uneventful except for the 63 pounds I gained! After Sarah's birth, I recovered well from the c-section but just didn't feel as though I was progressing. My energy level remained low and I felt fatigued. I felt as though my insides were "jumbled up" and decided at 3 weeks post partum to see my doctor just to make sure everything was ok. My doctor insisted I was fine and I insisted I was not! We decided to schedule a CT Scan just to ensure everything was "ok". The following week I received a call from my doctor to come see her immediately. She informed me the CT Scan showed enlarged lymph nodes and my spleen was double in size. The CT Scan diagnosis was Lymphoma. My doctor set up an appointment the same day with Dr. Ellis, a wonderful Oncologist. She didn't want to read me the results and send me on my way only to wait a week or more to see a doctor. Dr. Ellis' preliminary diagnosis was Lymphoma as well. The next day I had a bone marrow biopsy and the following week I had a PET Scan. I was given an official diagnosis of Non-Hodgkin's Lymphoma. There are many sub-types of Lymphoma and I have low-grade Follicular Non-Hodgkin's Lymphoma.

Because of the slow-growing nature of this type of Lymphoma, none of my recent CBC's indicated there was anything unusual going on in my body. In fact, the doctor indicated that this type of Lymphoma can grow for several years and the body compensates for the disease so the CBC doesn't always indicate there may be a problem.

There is treatment for this type of Lymphoma. I start chemo on Monday, June 2 and will have a total of 6 to 8 chemo treatments every 21 days. The goal is to get me into remission and then manage the Lymphoma over the years. Ultimately, we pray that a cure is in the future.

Update: the first and second CT scans did indicate I have a 4" hernia from pregnancy!!! Obviously this is what I originally had in mind for my diagnosis. Needless to say, I will need to have this repaired in the near future.

On a side note, most people diagnosed with Lymphoma are in stage 3/4 and typically are seeking medical advice for other problems as I was. Please ensure you take a moment to read the signs of possible Lymphoma. Of all cancers, Lymphoma is only one of very few cancers that is on the rise. 

Fast forward to 2011 when I relapsed and had chemotherapy along with consolidation treatment. I was hopeful this would be my long term remission.

Fast forward to fall of 2015 when I relapsed again and entered a clinical trial at Mt Sinai in NYC. Nivolumab and daily Ibrutinib worked well at resolving my follicular lymphoma for the eight months I was enrolled in the trial. Unfortunately a large mass was found behind my right knee in  August 2016 which turned out to be aggressive transformed triple hit diffuse large b cell lymphoma. I completed platinum chemotherapy the week of Thanksgiving. I am now preparing for an allogeneic (donor) stem cell transplant at Memorial Sloan Kettering in NYC. My sister is a perfect match and will serve as my donor.  I've completed 12 sessions of radiation to my leg and all went well.  My admittance to the hospital has been delayed one week so my new date is January 18. I'll receive more chemo and total body irradiation for one week. My sisters stem cells will be collected in Houston and flown to me for my transplant on January 25! I'll remain in the hospital for 4-6 weeks then remain  near MSK for another 3-4 months. I pray this is my cure!

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