I got back from the NIH/NCI yesterday around 5:00 PM. I'm still quite worn out from the traveling so I'll keep it short.
There in still quite a bit of mets in the liver. Only a small amount (possibly) went necrotic. There is also a new metastatic tumor, on the abdominal wall midway down the suture line where they opened me up. This is not good -- it's one more area to fight now. When I received the information yesterday morning at about 11:30 AM, Dr. Kammula had not had a lot of time to study the CT/PET/MRI scans and compare them to December's. He will also need to consult with Dr. Avital when he returns on April 12th.
Thus, I am now off the Gem-Ox and that is great because now my neuropathy can start to subside. My bone marrow can start producing RBCs again. That, is great because because my anemia will start to subside, too.
I will know more in the coming 10 days about the new plan of attack, possibly involving immunotherapy (as I understood it). And yes, we are disappointed, but I am never giving up and this is but another bump in the road back to NED (no evidence of disease)!
This Wednesday I head to the NIH/NCI for PET/CT/MRI scans on Thursday. Dr. Avital, head of the research program I am in, won't be there this time, but Dr. Kammula, who lead my surgery back on 9/23, will be. I'm sure they will consult once Dr. Avital gets back on April 12th, so I have no worries.
I have had off and on achy-pain in my torso, primarily along where they cut me open and mostly lower down near the navel area where one constantly bends. My CA19-9 is up some to 945, but nothing to be alarmed about. There's a lot going on in my liver and maybe the chemo is slowing down doing it's job. I seem to go in 6 month spurts where a regimen works. Bring on the TACE!
Petunia demonstrates beautifully how I have felt most of the past 15 days or so.
Two days ago it was sunny and 75 F. This morning we had 8 inches of snow, it was 34 F and the furnace at the two storey end of the house had quit at 3:30 AM. Luckily the system at the living room/master suite end was still working. We got it fixed about 3:00 PM (flame sensor needed cleaning). I can't take this weather anymore -- STOP IT!
I am marginally better but will likely work at home most of week. My company is great that way! I am soooooo ready for this anemia and neuropathy to disappear.
Just a short post because my anemia is worse (hemoglobin 8.1, hemocrit 26) and my energy is really low. Coupled with that have been fever-bouncing (102 - 93.5F and all in between), night sweats and restless sleep. I had chemo yesterday, too. It's getting very wearing... but I go to the NIH on March 31st for CT/MRI/PET scans and to see where we go next. Hopefully more TACE, to rid the mets from the liver.
I'm never giving up and am still positive, just temporarily worn right out. As a result, posting will be light over the next two weeks. Thanks again to all for your kind words, thoughts, prayers and good wishes. The same goes back to you, from here, every night.
I'm still progressing, albeit slowly, and am getting very tired of all this dreary weather we have had in February. It seems like nothing but rain and cloud and snow and "wintery mix" as the idiot weather jockeys call it. Give me sun! I've upped my calorie intake and am finally putting on a couple of pounds. Before long, I'll be at 135 consistently!
This is from one of my all time favourite female singer/songwriters -- Amy MacDonald. You can figure out the lyrics for yourself.