I'm currently living with Hodgkins Lymphoma. One of my treatments included a tandem auto stem cell transplant. I described the process of how this works to my buddy Sean and he said "sounds like they're doing a Control Alt Delete on you". I thought it was as good a description as any. That seems like a long time ago but the name has stuck. I've basically had to start my life over, so please feel free to join me!
Wednesday, February 24, 2010
Update
Sorry no posts lately, I've been travelling down to the keys with friends and it's pretty laid back down here!
Chris, Just reading through your posts. My 25 year old daughter has been dealing with HL for 4 years. She did all the CHOPs, ICe, radiation then tandem stem cell at COH only to have it return however she started on SGN-35 almost a year ago and has been disease free for almost 11 months. What happened just at Christmastime was her round about 12 or 13 and she started to have neuropathy in her toes and feet and it soon spread up to her legs and thighs. It took several weeks to get the insurance to approve to give a dosing of IVIG but just over the last week she received 5 days of infusions for a total of 1,000 mg. It really seems to have already made some improvement. A couple of things we now know. Drink plenty of water when you are infused. This caused her a major headache literally. We only found out about this by reading on the internet not by doctors...go figure. Also, the doctors tell us that the damage to the nerve via the mylin coating starts the problem at the lowest points (i.e. toes and fingers) but heals from bottom to top (i.e. thighs to toes). She is now off of the clinical trial of course because they could not say for sure that the neuropathy was not caused by SGN. At this time they will evaluae and decide how many IVIG treatments to give. Hope this is interesting info for you. Keep your chin up. You may be surfing out their before you know it :) Many blessing and prayers to you.
I fell on your site by fate, I have not a clue as to how I got here. Your story has got my hart out on the floor. You are an amazing person giving people like me the strength to participate. Anything I can do let me know!
4 comments:
Enjoy and have some fun
Chris,
Just reading through your posts. My 25 year old daughter has been dealing with HL for 4 years. She did all the CHOPs, ICe, radiation then tandem stem cell at COH only to have it return however she started on SGN-35 almost a year ago and has been disease free for almost 11 months. What happened just at Christmastime was her round about 12 or 13 and she started to have neuropathy in her toes and feet and it soon spread up to her legs and thighs. It took several weeks to get the insurance to approve to give a dosing of IVIG but just over the last week she received 5 days of infusions for a total of 1,000 mg. It really seems to have already made some improvement. A couple of things we now know. Drink plenty of water when you are infused. This caused her a major headache literally. We only found out about this by reading on the internet not by doctors...go figure. Also, the doctors tell us that the damage to the nerve via the mylin coating starts the problem at the lowest points (i.e. toes and fingers) but heals from bottom to top (i.e. thighs to toes). She is now off of the clinical trial of course because they could not say for sure that the neuropathy was not caused by SGN. At this time they will evaluae and decide how many IVIG treatments to give. Hope this is interesting info for you. Keep your chin up. You may be surfing out their before you know it :) Many blessing and prayers to you.
Good to know you're OK and chilling out.........Vx
I fell on your site by fate, I have not a clue as to how I got here. Your story has got my hart out on the floor. You are an amazing person giving people like me the strength to participate. Anything I can do let me know!
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