I have been updating my last post about how am am physically handling the PCV chemotherapy to keep the details all in one place. The physical aspect went better than I expected. I did have some emotional problems. The 'possible' side effects of the drugs are quite scary, some requiring emergency care. I would get distressed on the slightest indication of symptoms. One of the possible reactions is lung failure. This is so prevalent that the doctor had me take a lung function exam with a pulmonologist before starting the chemo. The major problem I had over the cycle was exhaustion. Doing the simplest physical activity would put me back on my butt. I start taking deep breaths to regain my composure. I would then start thinking I can't get enough air - OMG are my lungs failing??? No, just freaking out. This has probably happened five times over the past three weeks along with a host of other false alarms. With this experience under my belt I expect the upcoming cycles will be less stressful.
Speaking of stress, most of the issues around my disability pay have been resolved. My application for federal social security and my private long term disability insurance have been approved. My family and I need to adjust to 60% of my regular salary, even less having to pay for medical insurance. Here I hope to get on Obama-care before Trump-neglect takes effect. I am confident that I will be able to go back to work after this chemotherapy is behind me a couple of months down the road.
Looking forward to spring.
Sunday, January 29, 2017
Monday, January 9, 2017
PCV Chemotharpy - Round One.
I started the PCV chemotherapy last night. Week one is the 'C' component, followed by 2 weeks of the 'P'. Dragging today, but stomach feels OK.
Getting the chemo approved ordered and shipped though the insurance was a challenge. First thing is that the insurance co and its pharmacy do not recognize the drug names the doctor told us.
'P' doctor says is 'Procarbazine' and 'C' for 'Ceenu' The insurance pharmacy calls these two drugs "Matulane"for 'P' and "Lomustine" or "Gleostine" for the 'C'. nice. Second was that the pharmacy (BCBSIL Prime) then said that it will be need to be filled by their Specialty pharmacy, then they said "we are not licensed to dispense that drug, you will have to to a third party, "Accredo". I have my Dr send there. Several days go by and they say that they never got the Rx. Then, out of the blue, Walgreens calls me to set up for delivery. I have no idea where they got the Rx from, but they assured me that it was covered and ready to ship. Great , ship it! But wait, they only have the Rx for the 'P', no mention of 'C'. I call the doctor and have the re-send to now a third place. That worked, and I had both in hand a couple days earlier. The 'V' is intravenous, and the doctor recommended to skip that for now. Its been shown recently that the this drug does not get into the brain, and some people take it because all the research was done with the full PCV combination. not me.
I am happy with the progress of therapy with my left hand. Problems with proprioception continue.
Have a great new year,
-Ed
Update 1/13:
Wow is that Ceenu powerful stuff. I took 220mg on Sunday night and did not feel OK until Thursday night. In between was fatigue and nausea. When I was on Temador, I would take 400mg every day and not crash like that until after 3 days. The smaller amount of ceenu brought me down immediately. It caused constipation immediately, I should have started miralax the day before.
Update 1/16:
I started the Procarbizine last night. 1st of 14 200mg daily doses. Taking miralax as a precaution. Woke up with a headache, other than that feeling ok.
Update 1/24:
I have been taking the Procarbizine for about a week now. I don't have anywhere near the stomach problems I had with the temodar. I have been eating regularly, small portions throughout the day. I was feeling pretty good till Thursday last week. I took a walk and was having a hard time getting home from exhaustion.The fatigue has persisted since then. I spend a lot of time sleeping.
Update 1/29:
I took my last dose of Procarbazine last night... first cycle complete! I have been eating regularly and taking Miralax daily. The only significant problem was exhaustion. Now I get three weeks off and then start cycle two of six.
Update 8/4:
The side effects got worse as cycles progressed
Getting the chemo approved ordered and shipped though the insurance was a challenge. First thing is that the insurance co and its pharmacy do not recognize the drug names the doctor told us.
'P' doctor says is 'Procarbazine' and 'C' for 'Ceenu' The insurance pharmacy calls these two drugs "Matulane"for 'P' and "Lomustine" or "Gleostine" for the 'C'. nice. Second was that the pharmacy (BCBSIL Prime) then said that it will be need to be filled by their Specialty pharmacy, then they said "we are not licensed to dispense that drug, you will have to to a third party, "Accredo". I have my Dr send there. Several days go by and they say that they never got the Rx. Then, out of the blue, Walgreens calls me to set up for delivery. I have no idea where they got the Rx from, but they assured me that it was covered and ready to ship. Great , ship it! But wait, they only have the Rx for the 'P', no mention of 'C'. I call the doctor and have the re-send to now a third place. That worked, and I had both in hand a couple days earlier. The 'V' is intravenous, and the doctor recommended to skip that for now. Its been shown recently that the this drug does not get into the brain, and some people take it because all the research was done with the full PCV combination. not me.
I am happy with the progress of therapy with my left hand. Problems with proprioception continue.
Have a great new year,
-Ed
Update 1/13:
Wow is that Ceenu powerful stuff. I took 220mg on Sunday night and did not feel OK until Thursday night. In between was fatigue and nausea. When I was on Temador, I would take 400mg every day and not crash like that until after 3 days. The smaller amount of ceenu brought me down immediately. It caused constipation immediately, I should have started miralax the day before.
Update 1/16:
I started the Procarbizine last night. 1st of 14 200mg daily doses. Taking miralax as a precaution. Woke up with a headache, other than that feeling ok.
Update 1/24:
I have been taking the Procarbizine for about a week now. I don't have anywhere near the stomach problems I had with the temodar. I have been eating regularly, small portions throughout the day. I was feeling pretty good till Thursday last week. I took a walk and was having a hard time getting home from exhaustion.The fatigue has persisted since then. I spend a lot of time sleeping.
Update 1/29:
I took my last dose of Procarbazine last night... first cycle complete! I have been eating regularly and taking Miralax daily. The only significant problem was exhaustion. Now I get three weeks off and then start cycle two of six.
Update 8/4:
The side effects got worse as cycles progressed
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