Welcome everyone the place for Ibarhim updates. If you would like to recive e-mails every time I post an update please add your e-mail address under the Guests. Over the last year writing has become more and more a part of my life. Taking the advice of sevral people who care about me I have started this so as a way to post new updates on how things are going with my treatment. For those of you who I haven’t stayed in touche with below is a rundown on the last few years and how things stand.

In November 2008 I was diagnosed with Hodgkin Lymphoma and treated with various different chemotherapy drugs till September 2009. Then in October 2009 I received and Autologus Steam Cell Transplant. For those who don’t know that means I had my immune system reset with my own cells saved on ice. The goal was that this would help destroy any remaining “chemo resistant” Hodgkin cells. A PET CT-Scan in January 2010 showed that the Transplant had been less than effective, and there were still active lymph nodes that were presumably Hodgkin Lymphoma. Then Starting in May 2010 I took part in a research study where I received the latest anti Hodgkin drug called SGN-35. The study was a real tuning point. It had many parts but the key was that after a few months it appeared that my lymph nodes where stable and with a little help form Social Security I was able to begin moving on with my life. I relocated to Humboldt County California where I now live with my girlfriend Alison. I kept the getting the study drug here in California via the The Stanford Cancer Center till May 2011. Wile at Stanford I met with the bone marrow transplant people and discussed options for another transplant, this in March 2011.

A little explanation of the difference between transplants is worth mentioning here. When I was first offered a Bone Marrow transplant, back in 2003 at the age of 16, it was not the same procedure it is today. Five years later in 2008, when I was re-diagnosed, the Autologis transplant (Auto) was standard of care treatment, but new info had been noticed about the higher risk Allogeneic Transplant (Allo). These two differ in the way they function as a treatment. As well as, the way the overall procedure effects recovery. The Auto (called this because it uses the patient\'s own blood steam cells) destroys cancer cells only during the conditioning period right before the transplant takes place. So the idea is that I would be treated with full body irradiation and high levels of chemotherapy to kill as much of the cancer as possible. Then restart my bone marrow with my own saved cells. The Allo, on the other hand, can has both the conditioning treatment of an Auto, but it has been know to fight cancer in the long term. The graft-versus-malignancy effect(aka. graft versus tumor effect), witch is the donors T-cells ability to locate and destroy cancer cells, is the true strength of the Allo transplant. Evidence suggest that this may play a larger role in the overall management of the disease than the benefit of the initial conditioning with radiation and chemo. The risks of a intensive Allo transplant are still rather high. When asked by the doctors in September 2009 if I would like to get an Allo transplant ,instead of the planed for Auto, it was the overall survival rates carried the most weigh. The rough numbers I remember are as follows; a 33% chance of the procedure working at curing my cancer; a 33% chance of me making it though the procedure with my life but with the cancer still a looming threat; and a 33% chance that I would die ether during the procedure or because of an infection complication. That being said, I declined the proposal.

A year and a half later, at Stanford in March of 2011, the Allo that was offered had significantly better odds. The overall mortality rate for a TLI & ATG for Non-Myeloablative Allogeneic Transplantation (NMT) was something like 12%. The real questions in Dr. Ginna G. Laport\'s mind was when would be the best time for me to have a transplant. Because an NMT functioned by reducing the immune system of the patient so that the donor cells can graft into my week bone marrow and grow. There is the risk that during this time cancer cells may have free range to grow before the graft-versus-malignancy kicks in effect. So it is best to get the NMT when the cancer is at its weakest.

This then brings us to the last five months of the story. By May 2011 I had received something like 17 rounds of the SGN- 35. The study was hard to maintain and the fealing I got form the staff was that they where working very hard to keep me on the study. There was no talk as to when the best time to would be to move to a transplant there was only talk of more of the same. Before I left for California, in August 2010, my naturopathic doctor, of 12 years Dr. Karim Abdullah, had advised me to seek the advice of a Qualified Tibetan Physician. Namely, one Dr. Yeshi Dhonden, who he held in vary high regard, and who he had taken patients to in the past. With Dr. Dhonden not coming to the United States anytime soon I looked for another qualified Tibetan physician. After an interesting search I found Dr. Dickey Nyerongsha was able to see me at her Berkeley California office. I also did a my research on this option before I made my next move. I looked into a study that was done with Dr. Dhonden at UCSF with a group breast cancer patients. The results showed that with Tibetan medicine two out of the 11 patients had stable disease after one year of Tibetan treatment. Simultaneously most patients saw an increase in quality of life. In May of 2011 what I was looking for was an increase in the quality of life. I wanted to try something new, a different approach to my healing. So it was that I decided to get off the SGN-35 study in May 2011 and begin my own Tibetan medical trial. To call is a trial is a stretch but the truth is I wanted results. The lack of discussion about a long term plan for me form the research group at Stanford was a real turn off.

In late July after three months of being off the SGN-35, and trying the Tibetan herbs, I received a scan that showed that the majority of disease was stable and generally small. One area showed inflammation but proved to be normal after a needle biopsy. With all sines pointing to my tumors being stable I decided that now was a good time to get the transplant at Stanford. Today, the 20th of September 2011, I spoke with Dr. Laport and we set a time table to see if now is the time for a transplant.

On September 29th, 2011, I recived a scan that showed that i had multiole areys of glowth contuied. Dr. Laport did not think now is a good time for my treatement and so not we are discussing begining a treatment called Bendamustine. The plan is to get two cycles of this then re-scan to see if there was a respons.

On October 19th, the same day as my girlfriends birthday , i went to the ER complaining of balance issues and numbness on the right side of my body. I was flo

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