August 28, 2012 – Things Begin to Coalesce

Summary

Met with local oncologist Dr. Levine, and we are converging towards the standard of care treatment, Bendamustine + Rituxan + maintenance Rituxan. Two day treatment, every three weeks, six cycles. Followed by some period, probably two years, of quarterly or bi-monthly Rituxan. All other possibilities had issues or risks that aren’t optimum. This regime shows 69.5 month average of “progression free survival” versus 39 months PFS for the previous treatment I took (CHOP-R) and is about 2/3 less toxic. This can be administered locally, no trips to Moffitt required.

After I’m back in remission, we have to make a decision about pressing on for an allogeneic transplant, or waiting until next relapse, hoping for newer technology to supersede the need for the transplant, or at least put me back in remission so I can go forward with transplant. By that time, I’ll be towards the upper end of the age bracket for one of these transplants, so doing it sooner has advantages.

Excruciating, Disgusting, and Intensely Personal Detailed Information

First off, for any of you who don’t know Dr. Levine, he’s the bomb. There is, in my expert opinion, no finer doctor around, medically or otherwise. We here in Brevard are blessed to have him in our little corner of heaven on Earth.

After our appointment this morning, where I expressed my difficulties communicating with docs and nurses at Moffitt, he fired off a long email; worked his usual full day, then stayed late at his clinic researching alternate treatments, calling me at home at nearly 7pm with results of his study. Most clinical trials are using Velcade, so he was looking into combining that with the recommended treatment above. Turns out that’s too nasty unless I was in really bad straits. 

So here’s the near term plan, unless Sandy and I make a decision not to go with the plan above.

• Tomorrow I meet with the Oncology Education Nurse, who gives lots of gory and useful details about the treatment, including side effects, risks, indicators of problems to watch out for, and the mechanics of administering it.
• Thursday I talk to my dentist, Dr. Andrews, about a problem with a crown. They really want all dental issues settled before your immune system goes south.
• Tuesday the 4^th I have a colonoscopy, which was routinely scheduled, plus Mantle Cell often presents in polyps.
• Wednesday the 5^th I meet with Dr. Zambos, my surgeon, to have a pre-nuptial counseling session before  I become “man and chemo port” again. Not sure when the blessed event takes place, except it will be before the 11^th.
•  September 11^th & 12^th would be my first chemo session if we go the Br-R approach, or probably any other.
• September 13^th I get a shot of Neulasta, which pumps up and stabilizes my white blood count.
•  Repeat every three weeks for five more cycles

Here’s a study showing the results of my probably treatment:

www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=95807

For those interested in what a chemo port is:

http://en.wikipedia.org/wiki/Port_%28medical%29

All Your Offers of Help

Are HUGELY appreciated! We promise, when we need something, we will ask. Any shyness we had about asking for help was overcome last time. Right now, we’re fine. Later, we’ll need something.

What can you do right now?

1.       If you pray, please do so. If you don’t, consider starting. Our family is strong, close, and supportive. But I’ve got to say, this whole thing sucks like a 10 horse shop vac and we need all the support we can get. Plus it makes you feel good.
2.       Donate blood. If you can. Not for me, but just in general. Sometime I may need blood from someone I trust, in that case, you’ll know. If you’re type A Negative, please let me know.
3.    Consider registering with The National Marrow Donor Program. If I go for a transplant, first they’ll test my sister for a match. She has a 25% chance of matching. Then it’s a crap shoot to find a match. Only about 1% of people match. So the more possibilities, the higher the chances I can find someone. It can be done by mail, with a cheek swab kit. Go to www.marrow.org and check it out. Please.

Horrible Terrible Cancer Jokes in Bad Taste

WARNING: 37% of people will think I’m a terrible person for posting these. The other 63% will KNOW I’m terrible! I strongly recommend you don’t read these!

A man isn't feeling well, so he goes to see his doctor. The doctor examines him, and then asks to speak with his wife. The doctor tells his wife that her husband has cancer. The wife asks "can he be cured?" The doctor replies "there's a chance we can cure him with chemotherapy, but you will need to take care of him every day for the next year - cooking all the meals, cleaning up the vomit, changing the bed pan, driving him to the hospital for daily treatments, and so on".
When the wife comes out to the waiting room, the husband asks her what the doctor said.
The wife answers: "he said that you're going to die".