October 6, 2015 at 9:45 pm #89988marionsModerator
Derin….good to know you have a molecular inhibitor in your arsenal. The blood transfusion will give you a big boost; you should feel significantly better and the platelets should rise as well. That’s my big wish for you.
MarionOctober 6, 2015 at 8:55 am #89987middlesister1Moderator
Thanks for checking in. We’ll try to focus on the good – shrinking tumors that are too small for trials. I wish you and the family many more years of feeling well and attending concerts together- that’s what life’s about.
(Belated Happy Birthday)
CatherineOctober 6, 2015 at 5:33 am #89986lainyParticipant
Aw, Derin….NO bucket kicking unless you are fishing! Gee, I am sorry to read what you have been going through and then I got to the shrinkage3 part and felt a little better. This monster sure know the best people to attack. He only goes for the best! Please do try to keep us updated and hoe the next news is even better. Praying for you, sending good vibes and the best juju. P.S. Hah! I didn’t know one name in that concert. Now if you mentioned the Crewcuts or the 4 Lads that would be a diff. story!October 6, 2015 at 3:41 am #11754hamptonsarasotaMember
Haven’t posted in quite a while, so I’ll fill everyone in. 6 months ago in April, I had another experience with what we thought was a stricture so my local Interventional Radiologist put a tube in to try to get the bilirubin levels down (I was at 12.0 I believe) and they wouldn’t go lower than 5.0. After a week stay in the hospital and discussions with my IR and Sloan Kettering, it was decided that I would go to NY for scans/treatment. However, we postponed the trip north until AFTER my birthday on the 25th, I had a concert to attend with my son (Breaking Benjamin, Papa Roach, Godsmack, and Slipknot).
Got to NY on Monday the 27th of April and had a CT scan done and was literally prepped for a procedure to swap out the tube when they said I needed to get an ultrasound and MRI done. Pulled me out and went in the next day for the scans, MRI detected something, Ultrasound showed something pressing on the portal vein. Original tube was left in, they added a second one to relieve some of the pressure on the portal vein and it also worked to bring down the bilirubin. Unfortunately, the 2nd tube was between my ribs so the wife says I was quite entertaining when on the Oxycodone to stop the pain. Didn’t relieve it too much, and we decided to get 2 metal stents installed which was done on a Friday. When they placed the stents, they also took a biopsy of the mass that was present and it was confirmed for Cholangiocarcinoma.
The tumor was smaller than my original one, but literally in the exact same location (albeit on the opposite side of my body because the liver grew back on my left) at the split of the bile ducts just inside the liver. I set up an appointment with Dr. Maeve Lowry, an oncologist at Sloan, and we decided on a treatment plan (Cisplatin and Gemzar, same as original adjuvant surgery). I’ve been trying to follow the 2 weeks on, one week off, but am having a very hard time with platelets recovering. For example, today my platelets were 44 one week after chemo last Monday. So, not only am I having a hard time reproducing platelets, the pressure on the portal vein has caused my spleen to get enlarged and apparently, the spleen is a ‘trap’ for platelets. I’m’ getting hit from both sides!!!!
4 weeks ago I had a slight fever, but it went up to 101.8 so off to the hospital we went. No infections or bacteria whatsoever but my white blood cells were 1.5 and they should be a minimum of 4.2 I believe. Red blood cells were also low, so I got 2 units of blood (my first official blood transfusion!) and was released on Tuesday after a 4 day stay.
Slight silver lining: August 28 I had an MRI done and the tumor has actually shrank from the chemo. I’m a non-surgical candidate at this point (2nd opinion from Columbia Presbyterian in NY concurred with my surgeon at Sloan – I would basically kick the bucket on the operating table) so it is indefinite chemo at this point. My genetic profiling was done also at Sloan and there are 2 genes with a mutation, one of which is present in 22% of CC patients. The trials out there I am ineligible for because (and this is the funny part) the tumor is too small. Ironic, huh? I guess I’d rather have a smaller tumor and no trial participation versus a large tumor and being in a trial, right?
Anyway, that’s my story and you’re all updated! I’ll do a better job of posting and keeping everyone up to speed also!
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