I started round 3 of 4 on Thursday, Feb 27, with the full compliment of Gemzar, Cisplatin and Nivolumab (immunotherapy) complimented by a hefty dose of steroids and two flavors of anti-nausea medications. It’s an all day-long event where I come into the “salon” (the place reminds me of my mother’s beauty shop) at 7:30 a.m. and lounge about in a relaxing massage chair until 4;00. The nursing staff are very kind, supportive and knowledgeable, and the support staff are equally helpful and considerate. And because I”m on a trial, I’m treated to additional attention by specialists and more forms to complete each visit.
Overall, the experience has been much less detrimental than one could expect, after learning about all the possible side effects. I felt well enough to go into the office Friday morning and managed to work the whole day, but I felt pretty worn down by 2:00 pm. I haven’t had the bad nausea so many get, but I do take a recommended dose of Olanzapine before bed on days 1 – 4 to minimize the effects of the chemo drugs. I have a stash of other anti-nausea drugs including Compazine, Zofran and Ativan. So far, I haven’t need them other than a few tabs of Compazine two weeks ago. The side affects from taking these drugs is sedation and constipation. The constipation is the worse.
My appetite has remained relatively normal and healthy throughout the treatment. And as today, I haven’t lost any hair. I notice that my sense of smell is definitely affected, and I become intolerant of some strong odors. I tried fasting before the day 1 and day 8 treatments but after the 2nd round I dropped that plan. It’s suppose to aid the chemotherapy, and help with nausea, but I found fasting for 72 hours to be more debilitating than it was worth. One other common adverse side-affect of the chemo is ringing in the ears. That is true! And I’ve read that it’s permanent. The research literature points to the fact that we have around 15,000 hair follicles in each ear, and if they are eliminated by chemo, they don’t grow back. Extensive research in this area has not produced any viable solution, thus far. The ringing is faint and doesn’t seem to be very pronounced, at this stage.
I”m looking at completing this round, with one more treatment of Gemzar on day 8, followed with a week off, and then I begin the last round of chemo, cisplatin and Opdivo on 19-Mar; and that includes a CT scan and a discussion around surgery options. If all looks good, I surmise that I’ll be going in for a Cystectomy the first or second week of April, and if the procedure goes well, I’ll get a Neobladder. The immunotherapy will re-commence the immunotherapy (Nivolumab) and the oral drug (or placebo). One more round left, and fingers crossed!!
I cut out coffee and alcohol from my diet completely; and I’m drinking only water (lots of water!) and herbal teas. I don’t miss either, for what it’s worth. I used to enjoy a glass or two of wine and a couple snits of scotch on the weekends. Now I’m content with a scoop of ice cream and blueberries! One more round left, and fingers crossed!!
I’m concerned about the spread of the corona virus “COPID-19” as that could have a tremendously negative effect on our lives and the economy. And I’m hoping our federal government heeds the warnings and recommendations from the CDC. I overheard the “salon” staff talking about a face mask shortage, and having difficulty ordering supplies. So I know the hospitals are gearing up for what appears an inevitable spread. I’ve been minimizing the trips to stores, malls, restaurants, and other public places to reduce the risk of exposure to Flu and other viruses. My exposure risk is still relatively high, I’m afraid. But I don’t worry about that much, just wash my hands and disinfect repeatedly throughout the day.
That’s all for today. Enjoy this day, and hug someone close to you.
Thank you for sharing this journey. I am always with you in heart and mind and every thursday my fiddle hail you with a tune. They are sounding really great, now knowing they have a big performance on the 9th. We can favetime again during rehearsal if you would like a live show! Stay well brother and as one should always do, cheers to life and a long healthy one to come. My wish to you
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