Sunday, August 02, 2009

Next chapter - bone marrow transplant

We have moved from a sustained remission of 6 months to an upcoming mini allogenic bone marrow transplant from an unrelated donor. The donor is a 20 year old international male. We will not be told any more information and can't contact him directly for a minimum of 2 years. We were blessed as this was a 10 out of 10 HLA type match! All of our 3 expert physicians advised us this is the route to take which can be potentially curative. According to them this is our window of opportunity, the door has been opened and we have to walk through it. Waiting would be taking a gamble that the disease would re-emerge and may not be able to be put back into remission with a second round of Campath.

Having read about all the potential side effects, and seeing how well my husband looks right now, it is hard to think about what the coming weeks and even first year will bring. We have faith in God that this is our cross to bear right now and we will emerge in a better place with respect to the T-PLL in the future.

Lots of pre-admission testing, house preparations and the like are making my head spin about now. We have 3 weeks to go before admission and chemo/radiation begin. We are told to expect an average hospital stay of about 3 and a half weeks (if all goes well, longer if not) and a return to a 'new normal' in a year. Day 100 is a key milestone along the way.

I would enjoy hearing from anyone else out there who has been through the min-transplant as I know I will be going through some hell in the weeks to come watching the love of my life going through all this.

Thursday, July 16, 2009

Contact information

We receive all comments posted to this blog by email, and we will answer promptly - if there is an address to send it to. Unfortunately, we can't contact you if you do not provide contact information in your comment (which understandingly, you may not wish to). Please feel free to leave an anonymous comment and send a private email directly. The link at the right (contact us by email) did not work properly, and I apologize for that. It works now. otherwise, my email is mgross [at] integrity [dot] com - I hope to hear from you!

Monday, June 08, 2009

T-PLL and Being One of The 10 or So

Michael in Michigan writes:

Mark has graciously acceded to my posting on his blog. Thank you very much.

This is a rare decease indeed as I am sure you are aware if you have come to this site in search of information or looking to obtain the experiences of ones who have gone before. Anxiety can really get you when you are first diagnosed with T-PLL. But my experienced tells me that the best is to buck up and not to let it get you down. Mental attitude is key. Just do not let the diagnosis get you down.

Actually going through the CamPath regime has been very easy for me. The only reaction were the chills occurring the first two days of shots and they went away with the taking of an Aleve pill or two. After that there were not symptoms. Even the bone marrow biopsy to determine whether the lymphocytes had been destroyed by the CamPath injections was a piece of cake.

The regime consists of being given a subcutaneous shot three times a week until it is determined that the bad T cells have been destroyed. From there it is on to a maintenance regime.

I would be pleased to communicate with you should you desire. Just let Mark or Shirley know and they will put us in touch.

Monday, March 16, 2009

My T-PLL Poster-Child nominee

I'd like to introduce Dennis Pyritz's new blog:

Being Cancer, Networking People Transformed by Cancer

which moves on from his wonderful personal journal at Caringbridge

So, move over Captain Kirk, because Dennis had really gone "where no man has gone before."

Dennis has gone through Campath treatment, relapse, re-treatment, and a mini-transplant, and is still with us to help us by sharing his life, his story. My hat is off to you, dear friend.

Friday, February 13, 2009

Experience with T-PLL

Thank you Mark for inviting me to join this blog.

I am a member of the elite club of individuals who have been touched by T-Cell PLL. My husband was diagnosed in December of 2007. "Watch and wait" until symptoms surfaced indicating it was time to treat. Just completed 18 weeks of Campath given sub-q three times per week. So far results are very good. I have spoken to others who were given Campath IV many years ago and also read a lot of the literature, so we were plesantly surprised that there have been NO symptoms to speak of to date. Next round will be what is being called 'Maintenance' which will consist of 24 more injections over the next year. The procedure will be to gradually taper the dosage off over the time period with hopes for a sustained remission at the end.

Would love to hear from others who have this disease as we are few and far between. In fact, our Oncologist told us "You would be hard pressed to find 10 cases of T-PLL in the US right now." Better odds wining the lottery..