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My journey with lymphoma

Here I will share my journey since I have learned I have Mantle Cell Lymphoma

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On the right path

1/12/2016

3 Comments

 
Last week I saw the doctor at Penn Thursday and then my doctor Friday. They agree that we are on the right course.

I’m going to backtrack a little first - the original treatment plan was for 4 courses of Hyper-CVAD chemo and possibly a bone marrow/stem cell transplant. I’ve finished course 1A & 1B and @a is scheduled fro start January 19th. after 2B is done, I will have another PET scan and possibly another bone marrow biopsy to re-stage my condition. 

The Penn doc said he would recommend one of 3 paths, depending on what the staging results show. First, as long as I am showing good progress and remission, continue with the other 2 courses of Hyper-CVAD. He said there is not enough data to indicate a stem cell transplant would be worth it - it hasn’t shown much either way. This should give me 3-7 years (or more) before the lymphoma becomes active again, and by then who knows what the newest treatment options will be. A maintenance plan of Rituxan may also be a good idea.
Second path is if I am showing partial remission. He said this is where a stem cell transplant may be effective. The chemo is working, but the body needs some help, so a fresh start with the stem cell transplant may be of benefit.
The last path is if I am not showing much of a positive response to the chemo at all. In this case he recommended stopping the chemo (since it doesn’t seem to be working) and trying one of the new meds on the market.
Both doctors agree that I appear to be responding well to the treatment, as my spleen has gone down in size and the lymph nodes that were palpable before are pretty much not now. They also both agree that most likely we are going to go with the first plan, but the re-staging will tell the tale. The Hyper-CVAD chemo is a more aggressive treatment, and they said not everyone can tolerate it, but with me being younger and healthy, it is the best option for me.

Since it took about 2 months to get through the first round of chemo, it looks like about another 6-8 months of treatment and testing. After it is all done, my doctor said I should be as I was before all of this mess.
I want to thank you all for the offers to help, the thoughts and prayers, they are truly appreciated! Thankfully, I am generally mobile and once my immune system rebounds I can get out and about some.
3 Comments
Rob Chambers
1/12/2016 03:11:06 pm

yo brother keeping up with u and surely keeping you in our thoughts and prayers. stay strong and would like to come see you soon
Robbie

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Bill Hart
1/12/2016 06:58:53 pm

Keep fighting and stay positive. We are taking this journey with you

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Dawn Couisine
1/12/2016 03:50:44 pm

Keep fighting the good fight, Ed!! Kick this beasts butt! I'm keeping you in my prayers. :-)

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    Ed Hainsworth

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