Hi all, I’m starting chemo this week for small cell carcinoma at Dana Farber. Plan includes Cisplatin, Etoposide and an immunotherapy add of Atezolizumab.
Seeking any positive experiences, tips on dealing with side effects, etc.
Hope you’re all enjoying your Sunday. Best, Leo
FYI:
pcnrv.blogspot.com/2016/12/...
Who's your oncologist at Dana Farber?
Thanks TA,
Quarterback is Dr. Mary Ellen Taplin and her colleague Dr. Daniel Roberts recently joined my care team.
Is Mary Ellen Taplin talking to Misha Beltran? I know she's working on some interesting clinical trials.
I mentioned Misha to Dr. Taplin following your earlier comment. She spoke highly of Misha, and the rest of their team. While I can't confirm their specific contact regarding my case, I do believe they have an all hands on deck approach underway, and am grateful to be in their care.
I tool a look at your blog link. Bit above my pay grade. Is there anything in particular that I should review, or share w the Dana Farber team? Thx
I think that "all hands on deck" approach is common at top institutions. There's usually a tumor board that discusses difficult cases. What didn't you understand?
No particular questions. Thx for the info.
This a link to the opinions of a real expert about chemotherapy for prostate cancer:
grandroundsinurology.com/dr...
Thanks t65.
Interesting.
I just started the exact same combo last Monday. Side effects hit Thursday afternoon and are now slowly improving. Nausea, heartburn, hip pain, all manageable with pills and very similar to my docetaxel experience. I am quite tired, low mood, and generally feel crappy but that sort of stuff is expected during chemo.
I did force myself outside for a walk yesterday and today. A 2 mile walk exhausts me like a 10 mile run did 6 months ago. Hoping for meaningful improvement in energy this week.
The complication in my case is I had a stent put in my ureter and a port installed a week before chemo, so I'm still recovering from that procedure and any leftover damage from a backed up kidney.
Thanks for the feedback Tom, and glad to hear that things are slowly improving for you. Hope for more improvement to follow. Good luck.
Couple of suggestions that really helped me and seemed to have helped others here. Chew on ice while getting chemo. Put the tips of your fingers into ice intermittently. Exercise Exercise Exercise!!!!. I also paid for a special head cooling thing that prevented my hair falling out. Not cheap and you need to do it during chemo and for a couple of hours after but it really worked. Cold Cap is the Company I used.(310) 570-2177 It wasn’t so much an ego thing. It is more the fear of people seeing you and tilting there head to the side and giving you that sad look while saying “I’m so sorry”. I hate people feeling sorry for me.
Schwah
Stage IV Prostate Cancer? I'm so sorry, Schwah. 😞
Not to worry brutha. Im on a “vacation” from all meds now for over 9 months. All my scans and blood tests are indicating no progression so I’m in top of the world enjoying my “vacation” immensely!!!
Schwah
My hair started falling out on day 16 post my first chemo session with Dosetaxal. Shaved it all off yesterday. It was an expected side effect. Taking it all in my stride, what else can you do. 😎
Drink lots and lots of water day before, day of, day after. My husband also takes Claritan, an anti-histamine, before, during, and after the infusion. It's supposed to mitigate some of the side effects, though at the moment he's getting slammed anyway three days after his Friday appointment for infusion #6.--exhausted, achy, flu-ish, little appetite.
The pattern has been he feels "okay" the day of and day after the infusion, then lousy for a couple days, then better the last two weeks of the three-week cycle when he does a lot of exercise. We plan our activities around that cycle. Anecdotal: he did the icing routine but still developed some currently mild neuropathy in his fingertips.
All good tips here. If hair is lost from chemo wear your baldness as the mark of a warrior. Because it is. And a badge to your courage. It is not permanent.
Shit.... then I've been a warrior all my life.......
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 02/17/2020 6:18 PM EST
I’ve been Carboplatin and Etiposide. Doing my 6th infusion starting today. I’ve found them more tolerable than Docetaxel. Of course everyone responds differently, but my experience has been largely fatigue for 3-5 days post treatment. Hope that helps you!
Unfortunately that combo besides the immuno drug did nothing for my ScNEPC, wasn't till Genomic Sequencing done and matched me to checkpoint inhibitors Blockade immunotheraphy... treated in Boston as well.
I was on an a trial which included Atezolizumab and the main side effect of concern is shortness of breath and possibly pneumonitis. In my case I ended up with early stage pneumonia which I blame on the Atezolizumab. So monitor your breathing and let your oncologist know if you have any signs of breathing problems. Good luck and here's hoping everything will go well.
John
Always great to hear from j-o-h-n!
I had a great experience during my six Taxotere infusions At Dana Farber. My oncologist is Dr Mark Pomerantz, did considered Dr Taplin or Dr Sweeney, anyway happy with my choice.
My PCa, is hormone sensitive, so Lupron and Zytiga with Taxotere has my PSA <0.02 and holding, from DX'ed of PSA 1000+.
The Taxotere infusion was a breeze, just a little fatigue, but being active did help a great deal. No coach potato episodes, move it... 
Your PCa is small cell carcinoma, obviously different treatment track, I'm interested in your experiences, as cancer cells eventually mutate.
By the way, Dana Farber has a good cafeteria, I've scheduled my infusions early morning, 7AM, had a full breakfast before treatment...
My hubby followed a similar protocol (carboplatin+etoposide+tecentriq). Finished 6 cycles. Now just receiving tecentriq. He tolerated everyrhing fairly well. Very fatigued. We are consulting with Dr. Beltran to figure out next steps. Good luck to you! 🙏🏼
We see Dr. Beltran March 11. Best of luck to you, us and everyone on this cancer rollercoaster.
Thanks and best to you too! Did you connect w Dr. Beltran directly or coordinate through your MO? I had the impression that my MO would consult w Dr. Beltran as standard process through their internal tumor board, but, perhaps I should inquire.
We met personally with Dr.Beltran March 11. Now back at home (in Missouri) my husband began radiation to inguinal lymph nodes and the sacral mass that biopsied small cell. He is to receive 16 imrt then begin chemo. Please keep in touch with us. There are so very few men with small cell on these forums and sharing info gives hope,amidst this dismal prognosis. We wish yoh continued success and every blessing there is.
Starting Keytruda this week
Starting Chemo with Taxoteal
Starting chemo Thursday 7/22
Starting chemo for the first time 🤞 
