Trial for TNBC - Using Cisplatin

Oddswinner

Is there anyone that may be connected to Dana Farber or another hospital that is doing a Trial using Cisplatin? Love to know how you are feeling, what side effects?

LillieRose

I'm in the Cisplatin Trial but I'm doing 12 weekly Taxol. Since I didn't get the Cisplaitin I'm doing taxol then AC first but since I did the trial I have the option if Cisplaitin later....

I met a girl who got the Cisplaitin... She said it was rough but she had an 8cm tumor and said after one treatment her tumor literally split in two!

Oddswinner

Thanks LillieRose, Cisplatin is very rough, a lot of side effects & nausea, but after one treatment mine has moved.

LillieRose

why are you doing the Cisplatin? Are you in the trial? My MO said I could add the Cisplaitin to the end of my treatment (so after Taxol and AC). I'm not sure I want all that chemo tho...

slv58

I'm on cisplatin and Gemcitabine for a local recurrence. I get it in 3 week cycles week 1 and 2 TX then week 3 is rest week- this counts as one to for a total of 6 (18 weeks). So far I've completed two and have had very minimal SE. Nausea is kept at bay with meds, neuropathy has slightly increased in hands, a bit of fatigue, but I guess it's still early. My bloodwork has shown my neutrophils dropping but hopefully my rest week will help. For some reason my MO is not putting me on neulasta this time.

I had high dose FEC-D the first time and do far I'm finding this much easier.

Oddswinner

LillieRose, Yes, I'm doing a Trial. 4X Cisplatin every 3 weeks, higher dose, 3 hr. infusion, meds keep nausea at bay for first 2 days, then usually nauseated for about a week, This is my first round of anything, after another biopsy, and then we will see if any changes, then still through trial will either be more chemo (not sure what) or surgery, haven't decided on that yet either. So I've basically just started my chemo in April, next round is this Friday and stomach churns every Thursday before, but you do what you have to do to survive. Good luck to you.

Oddswinner

slv58, Good luck to you, I hope the chemo kills it!

LillieRose

oddswinner are you at Dana Farber? If so we are in the same trial! I am having surgery after the 12 weeks and then more chemo...

Is nausea your only side effect?? What is your dose? I'm considering doing the Cisplatin after my other chemos so I am interested in how you feel!

Is your tumor responding?!

Oddswinner

LillieRose, sorry for so long, good weeks I get very busy, bad weeks I stay away from computer. I am at Dana Farber, the next and last of the Cisplatin is June 19, then we talk surgery. My tumor is responding well. It was golf ball size when I started and after 3 of the 4 infusions, they can't measure it because the lump is gone. But the side effects are hard, maybe cause I'm older, not sure or may more chemo dose. The nausea meds work well for first 2 days, after that this time I was down in bed for one day and nausea for the week. Ringing in ears won't go away, ankles swollen and numbness in pinkies and some in feet a little worse, but the outcome of the cancer is good, so here's hoping! When are you scheduled next?

slv58

Thanks Oddswinner! Are you on Gemcitabine as well? This is added to my cisplatin cocktail. I've found nausea getting more prominent with each TX, but still very manageable with meds (apo-prochlorazine every 4 hours as needed) but I'm finding that I have to act fast popping one of these at the first hint of nausea. I'm guessing the SE are accumulative. Neuropathy has increased a small amount in feet and a bit more in fingers. Again- not bad. I'm a complete write off the day after TX and spend most of the day in bed due to fatigue. My energy level is poor and it seems to be a physical demand to do anything slightly strenuous but I'm thinking this could be because of my blood levels. I'm always on the low side of something ( but able to still do chemo thankfully) and this last one was hemoglobin. I believe my muscle cramping/ fatigue is due to this. Overall, I'm managing quite well and hope it's doing its job this time!

Have you mentioned the ringing in your ears? My MO says this is a common SE and always asks me. I may have a bit of it but its allergy season here and it could be that as well. I've read that cisplatin can cause permanent hearing damage, but for me- it beats the alternative!

LillieRose, hoping your having minimal SE!

Hugs ladies

Oddswinner

Slv58, no I'm on straight Cisplatin and a nice big dose. I've found that two days after chemo, I'm down for a day (the anti nausea the give me with infusion where's off) then I start popping nausea meds for a few days whether I need them or not, because I usually do. Yes, fingers and toes numbing, bruising easy, hair is thining, but not out, ringing constant maybe not go away and they add steriods which gives me up and down moods (my poor hubby), but one more to go and it's working, then surgery is next! Good luck to you.

Oddswinner

Well I only got three doses out of four of the Cisplatin, due to side effects of ringing in my ears & inner ear hearing damage, some neuropathy, Edema, but it shrunk the tumor from 3.2cm to .08cm, had mx, now for AC, may not get Paxol or rads due to lymph nodes being cancer free. Even with side effect I'm happy I did the Trial!

Not home free yet, since they still pull out malignant cancer, but a big battle won!

CarolinaAmy

I'm so sorry about the hearing damage (I do hope it's not permanent!), but that's AMAZING response on the cancer!! WOOHOO!

slv58

Oddswinner, that is a great response! How are you doing with AC? How is your hearing? Sorry for such a lousy side effect, I hope you regain hearing. 

Oddswinner

Sorry, I haven't been on here for awhile, just trying to live life. I've only had my first dose of AC and Nuelasta, the AC made me tired, a little nausea (I took nausea meds. for 2 days, then ate when I felt queasy, no sense in more side effects!), but I have to say the AC is a blessing after the Cisplatin! Plus now that I'm not in a trial and at my local Cancer Center, I'm only driving 20 mins, getting free acupuncture, raiki, foot message while doing the Chemo and free meals for me and my guest, plus a 3 month free membership & Cancer Survivor program at a gym with a pool. Feeling like a Queen with Cancer, ha ha.

Slv58 you had a diep Flap with the Mastectomy, who did that work out? I'm planning a Tram flap, but did your breasts turn out even looking?

slv58

Oddswinner, I'm very pleased with diep although because I put on 25 pounds with chemo :-( I have to loose the weight before stage 2. I can't believe how hard it's been, really watching carbs as I'm also now prediabedic and have only managed to loose 2 pounds in 3.5 weeks- Grrrrr. My diep breast is a cup smaller but I was warned about that before- planning on reduction of natural, eventually. I love the fact that it's my tissue, all me!

countryfrenchrose

I am trying to find out how I can receive cis platinum instead of AC

Any advice

countryfrenchrose

hi odds winner not stalking just wanted to say hi again

I am doing AC now had side effects and wound up in the ER admitted to Hosp 1week after first infusion of the dose dense AC my WBC went down to 1.4 even with the nulasta shot delivered into my belly by a mini robot device taped on that delivered the dose 27 hours later for 45 min. I was pretty sure the dose went into my belly. I was at a Halloween parade we have open house at my house and I wss dressed like the red devil. I felt ok the day after since they add in those anti emetics with names I did not hear and cannot spell and it looks like they always add decadron (a steroid-cortisone)

In general i havealways been ok day after taxol Infusions also. Then it started I stayed in bed th fri could not even get up to go out on my sunny back porch we have a great sunset from my back deck

PS you are all invited to visit. We have a country house in DE. We can sleep11 12 with someone on the couch. That would be a fun pajama party.