On to SGN-35

Hi all, I apologize in advance for any typos...I'm doing this update from an iPad. Anywho, on to the 411. Elizabeth got a PET CT scan done on Wednesday of this past week. We then met with Dr. Safah on Thursday afternoon for the news. It seems as if Elizabeth had a really good response to chemo - in a lot of places. However, it appears as if a few of the tumors grew and a new lesion popped up in her lungs. I think this was halfway expected as we only did one round of chemo this time after the failed ESHAP regimen. On to the bad news though (bad and good I guess)...Elizabeth is now showing signs of having an extremely rare cancer. It is displaying elements of non Hodgkins lymphoma - specifically Diffuse Large B-cell Lymphoma. DLBCL is an aggressive cancer - but can be curable unlike many non-Hodgkins lymphomas. The goal of treatment is to kill cancer cells during their growth phase and because DLBCL grows fast, it's easier to kill. Unfortunately, there is also rapid growth which means we can't play around. Haha. The type of "gray zone lymphoma" (mixed HL and NHL) has only be recognized for a few years by the World Health Orginization. For many years it was black or white - Hodgkins or non-Hodgkins. Now doctors are realizing that it rare instances it can have elements of both. The bad news is that there is no consensus on how to treat these patients. The good news is we now have an explanation on why some of her tumors respond really well and some grow. Tumors express certain cell surface proteins that are specific for types of cancers. Her Hodgkins tumors appear to express CD15 and CD30 - however, there are certain areas where she is expressing CD20 - a sign that she has non-Hodgkins present. There are several treatment options because of this but the downside is that we don't know which treatment option will be best. It's almost a guessing game with no data acknowledging which option will work best for a mixed lymphoma. Soooo.... We are moving to the newly approved Adcetris. It was called SGN-35 during clinical trials and it's real name is brentixumab vedotin. This drug is nothing short of a miracle drug; however, it only induces a response in about 80% of patients. Having said that, it is a single agent therapy that is not really chemo...it doesn't have all the nasty side effects of traditional chemo. She can take this drug every three weeks for up to 16 treatments. The goal is still to reduce her tumors to get her to transplant - still an auto transplant too. We are still very hopeful for a cure...and we will try and hard as possible to kill this crap. Elizabeth feels great except for some pain in her left lung...where her largest tumor is residing. It seems to be pressing against her ribs and causing some moderate pain. Hopefully the SGN-35 will knock this thing down and get her some relief. She is not coughing anymore which is great. Her blood work looks great as well. Dr. Safah is very impressed with her physical well-being and so am I. I also think that her new diet is helping tremendously. She is still on the vegetarian diet with mostly raw and organic veggies and fruits. I truly believe that once we get her to transplant that this diet will keep in her remission. She starts the SGN-35 on Monday and will be done early afternoon. Hopefully she'll be able to come back to Memphis for a few days here and there so we'll keep everyone posted. We are trying organize a blood drive and do a benefit as well for the Lymphoma Society. I am also going to ask a favor of those willing to participate...we need to be prepared for a donor stem cell transplant in the future. It's called an allogeneic transplant - and she needs a donor. Her brother Darren is getting type tested on Tuesday and hopefully he'll be a perfect match. If you'd like to consider getting type-tested you can find out more info at bethematch.org - this is a big commitment so know that in advance. They will send you a test kit (swab) for free. You send it back in and they type test you. You then enter the national registry...for a stem cell or bone marrow transplant. If you a ever called to donate due to you being a match, it won't cost you anything. They bill the patient's insurance. There will be a little hassle included but you have the chance to save someone's life. It's obviously hoped that many will do it but it isn't to be taken lightly so we don't want ANYONE to feel pressured to do this. I just wanted everyone to be aware that we've come to a point in her treatment that it needs to be discussed. Let me know if you want more info...I know exactly how both procedures are done and can give you some info. I hope that everyone is doing well. We love all of you and can't say thanks enough for all the continued support and prayers. Keep 'me coming. God bless, Scott