Hi! I just joined this community and have been following Paul. We are praying his transplant and recovery is successful I was diagnosed with Blastic Plasmacytoid Dendritic Cell Neoplasm in September. In March of last year we began noticing a rash and then a tumor developed on my back. I had a large one and another smaller next to it. It was treated all summer and a biopsy done in Sept and later bone marrow biopsy confirmed as this disease. I am 74 almost 75 and was told Stem Cell would not be offered to me because of age. Only the very young, of which there are fewer with this disease I understand, are offered the treatment. They have not proven successful as well as other chemo are also so aggressive and I would have to be hospitalized 10-12 months and would die from the treatment. They have recommended I sign for Hospice and be kept comfortable and useful as possible. I have done that and am at peace with it. Hospice is wonderfully helpful and makes life much easier. I did just complete a round of radiation on the back tumor and it had shrunk from golf ball size to flat. I have developed many rashes every day that come and go. Some like to stay around longer and develop small marble size like tumors but so far I will not have treatment on those unless they get too painful. Most recent is on my forehead. Best wishes with your continued life and support. Link to me is http://rareshare.org/users/JudyCarstens

Hiya Judy, I am sorry to hear of your diagnosis. As you know it is a very rare and agressive lymphoma with a heavily negative prognosis for the over 65's and under 18's. To be honest it is a heavily negative prognosis for all from the research that I have done. There are some advances in the understanding of the disease in that possible treatments that work on similar diseases and now being tried, such as high dose hyper cvad chemo along with total body irriadiation and a stem cell transplant, but the treatment in itself is very severe on the body. My symptoms were of the non skin type, swolen lymphs, from which the pain was so bad that even a morphine pump did not kill the pain, about 10% get non skin symptoms. It is good that you will get a sort of extention from the maintainance regime and that you are pain free. I think you are also very lucky to have made it to 77, given what i know I will be lucky to make it to 50 but hope to make it till my children are grown up a bit, the youngest is only 5. I confronted my own mortality during my treatment and was very set in that I wanted dignity and a pain free end. I am now 18 months post treatment 27 months post diagnosis and very frail, but delighted to be here as I expected to not be.

Hi Old Tree! Thanks so much for sharing. I am sorry that you have to go through this so young. I think you have a better chance of fighting for your life at your age because the hope Is your treatment will give you more time. No one can understand what we are going thru but those who are going thru it right? And then each one is different as you pointed out with non skin symptoms. I was not aware of that. Thinking that may be a part of what I have gone thru the past few Weeks and recently worse the past 4 days. My pain shows to most nothing but is Around my neck, and I have swollen nodes there (not too visible to others) but I feel it. My doctor wanted to try a medication to help that but I became so ill from the meds the Other night that I wanted to throw in the towel as it was a 10++. The most help I have found is from ICE. It doesn’t remove all pain but does give relief so I feel like Talking and even walking around the house outside even. I am blessed with children your age and they are in the prime of their lives so that Makes me happy. For you I will be happy to put you on our prayer list and your Family too. I can see why you so want to be there for your children. The ages they Must go thru are the best in their lives and they need their daddy. I am sure you Will leave them someday but will have had the opportunity to know you in a Very special way. We all want the best for them and want to leave the best examples We can. May God Bless you and Give you strength to see yourself through. I am also fortunate to have a husband who is and wants to care for me. He will be 81 next month and has some challenges of his own. He is mostly healthy for 81 & only takes a pill for prostate. He does have a severe Callous and broken down arch which causes it so his walking is painful and nothing seems to help all that but cutting holes in his shoes. We are thankful to be so healthy. I like you would want “dignity and a pain free end” (In your words.) Please keep in touch! Thanks so much for Sharing. I am in Arizona USA. Judy

Hi Michael, thanks for dropping in! Michael always knows the right thing to say to keep you going.