Thursday, February 16, 2012

Treatment 4 of 6 next Tuesday

Woohoo! on the home stretch!  Im actually starting to look beyond this irritating treatment!  My hair is also starting to get super thin, and Im wondering if Im going to be a baldy again after these 2 years of relentlessly growing my hair out. (ARGH)

Looks like Dr. O might want to try some additional CNS prophylaxis after treatment. Probably going to go back on SAHA/Niacinamide because it has shown in mice models to cross the blood brain, blood-retinal barrier and reduce cancer in the brain by 62% in one study I read. 

Of course this is assuming all of my scans, biopsies, etc are in the clear after treatment 6. This will be uncharted territory and I hope this is my last encounter with this stupid disease. Its also up in the air if I will get radiation to my eye after treatment ends also.. I believe Dr. Marr and Dr. O'Connor will have to hook up and decide.

But from a eye stand-point he says I am responding beautifully to treatment directly in my eye with MTX/Rituxan.  Still seeing floaters, but he says it takes a long time for those to eventually clear up because of lack of blood/lymph fluid circulation to the eye. (ironic huh) I may end up having to have a vitrectomy, where they suck out all of the fluid behind the eye and the aftermath of debris.

So I continue to be an enigma, a 1 in a million case, but it keeps the docs interested!  Treatment is starting to make me tired, but its more irritating than anything.

Im nervous for all of the end of treatment scans, biopsies...and what the future holds. But make no mistakes Ill do whatever it takes!  (Putting on superwoman cape)

Love,
Kara

1 comment:

Cindy Chasel Duvall said...

Hi Kara, Hope you're doing okay. I've been to your blog before, but haven't been able to read all of it. I'm just wondering if they have given you the R-CHOP chemotherapy regimen. I don't want to think I'm a doctor or know the particulars of your situation, but I also had Diffuse Large B-cell lymphoma and went two places in the beginning for a second opinion. One was a very notable cancer institute and they both said they would give me the R-CHOP and it was the best cure for this type of cancer. Just want you to be cured and to kick the cancer's *@#$! Maybe you've mentioned it in your blog and I haven't seen it. Hope all goes well for you. You're a trooper and hang in there.
- Cindy (email me if you can)