Hi Sara,

I was 32 when I was diagnosed with ALL.  My local oncologist suggested I go to a cancer center that specifically treated my leukemia rather than remain local.  My husband and I travelled to MD Anderson which is roughly 5 hours away from our home.  I was able to get into remission with the first round of chemo and was advised that I would have to have a transplant since the subtype of ALL I had is typically very aggressive.  My brother is a 2/10 HLA match and at the time, there were no other viable matches on any of the registries, so I had an expanded cord blood transplant.  That was in 2007.  13 months after that transplant, the ALL returned.  I was once again able to get into remission with the first round of chemo and fast tracked to a second transplant.  I was very fortunate in that there was a 9/10 HLA match on the registry willing to donate to me.  I'm now almost 15 months out from the second transplant and doing well.  If you'd like more detail about my treatment, I have a blog: www.anngregory.blogspot.com.  The first transplant happened in May 2007.  The second was in September 2008.

There are a lot of great people on here who have been tremendously supportive of me and I know they'll do the same for you.  Feel free to email me if you have any questions, etc.  Another great site that caters to young adults with cancer is www.planetcancer.org.

Best wishes,

Ann

hi Sara,

Read your story about your brother. I totally understand how you feel. My younger brother was diagnosed with T-LBL (similar to ALL) at the beginning of this year. Our whole family is devastated by this event but throughout the entire battle, it makes our family and each one of us grow stronger and we deeply understand how important and how close we are to each other.

It's stressful and unfair, but after reading all the blogs and came across all different sectors of people who have similar disease, it's really how life is. We just have to accept and stay strong.

My brother started with coughing. He did an xray and found a large mediastinal mass. After the diagnosis, he started on the hyper CVAD chemo regimen followed by radiotherapy. His response was excellent and achieved complete remission after his 2nd round of chemo. When everyone was relieved and thankful, he relapsed right before he was about to proceed to auto transplant, ie around 8 mths later. All of us were shocked, depressed. He started right away on ICE for one round and proceeded to auto transplant. Once again we are so thankful as his auto transplant went on very well, with tolerable side effects. My brother is a very intelligent, mature young man and has always been very proactive. It was the happiest moment to have him finally back home. We were all very nervous and careful, hoping for a speed recovery. Just about a week after he got home, he developed headaches, facial pain/ numbness. We were so scared, did an MRI and things were normal except with some inflammed soft tissues in his sinus. We suspected it might be siniusitis but vomiting and pain continued and we had to check him back to hospital. That week was terrible. He hadn't felt that bad throughout the entire treatment and had never vomited except this time with the pain. He couldn't eat for a week, he was on antibiotics/ antifungal IV but the pain didn't quite improve. He was in so much pain (nerve pain) that he has to be on morphine. It hurts so much to see him in pain, not to mention parents seeing their son has to suffer. One morning his left eye dropped and a lumber punture was done right away followed by pet scan. All things are normal. We were so scared and worried. The period waiting for the results from the scan was just difficult. He was on viral medications as the doctor suspected either a viral infection or possibility of lymphoma infiltration in his nerve, that is too minute to be detected by pet scan. Of course we are hoping for the best. However, when his right eye started to droop, we highly suspected it's never infiltration and he was on another chemo regimen. Right now, the hospital is searching for potential donors to proceed an allogenic transplant. But considering the proximity of his relapse and his past treatments/ transplant, it's difficult to proceed to allogenic transplant as we have to see his responses and body condition.

Anyways, I understand it's difficult. Since this is a rare and aggressive disease, it will be great if anyone can share similar experiences with me.

Best, J'aime

Your brother's case sounds similar to mine.  I was diagnosed with T-cell ALL (really T-cell lymphblastic lymphoma with blood involvement) eight years ago at the age of 30 and had CNS involvement at diagnosis.  I relapsed in the CNS and the bone marrow during maintainence chemotherapy.  Relapse presented with facial numbness on the left side, drooping eyelid and inability to smile/blow out my cheeks.  Went for a few weeks on the suspicion that a virus might be the culprit.  Unfortunaely, LP was postive and MRI showed a large lesion that stumped the radiologists at MD Anderson who could not agree upon the interpretation of the scans (ie. was the lesion a second cancer or ALL?).  Was given the standard line: you cannot have a transplant until this is resolved and was told by my extremely competent, but blunt leukemia doctor that he did not think this was going away.  Well, it did resolve with intensive chemo and I went to transplant with my brother as a 8 of 10 match.  I am cancer free, immunesuppression free and oncologist free today.

Hope this helps.  If I can answer other questions let me know.  This can and has been beaten.

My eye did recover though it did not do so completely until I had radiation prior to my transplant.  My wife sometimes notices a slight drop when I am very tired, but someone who does not know would not notice.  My vision is slightly worse in the left eye (I had a 6th nerve palsy which caused double vision when I was first diagnosed and the 7th nerve palsy at relapse), but that just means a thicker lens/more powerful contact on the left.  Yes, I am beyond lucky and I hope and pray that you brother will soon share my good fortune.