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Norcan View Drop Down
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    Posted: May 10 2013 at 9:50am
Hi Everyone,

I wanted to get in touch with you all following my first round of cisplatin chemo. I am having it as treatment for a local recurrence and because I am brca 1. Does anyone have experience with it? I found first round to be pretty awful and the nausea was out of this world. It is day 7 and I am just barely functioning again. And did you lose your hair? Doctors are telling me different things and a girl kind of want to know if she has to shave her head again. Any tips for the side effects would help too as I lose over 7lbs in first 4 days.

Previous treatment:; Mastectomy and axillary removal April 2011 following TNBC diagnosis. 4x FEC 60, 12x Taxol and 25 rads. BRCA 1 confirmed Nov 2011. Prophalactic second mastectomy April 2012. Local recurrence in intercostal area confirmed Feb 2013. Thoractomy performed and poor margins returned so chemo and more rads required. I am 33 years old.

Thanks for any help or advice. Kate
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2013 at 12:25pm
Kate,

I had 4 cycles of cisplatin 75 mg/m2 every 3 weeks.  I did not experience nausea, maybe slight queasiness and some loss of appetite. I had Aloxi 0.25 mg IV, Emend 125 mg PO, Decadron 12 mg PO as pre-meds and then Emend 80 mg every day x 2 days and Decadron 8 mg every day x 3 days. I did NOT lose my hair. I had neutropenia and was given Neulasta/Neupogen for support. My other big issue with cisplatin is significant fluid retention.  It wasn't too bad the first cycle but I gained and lost 16 lb over 3 days during the 2nd cycle.  After that I was very careful to limit salt intake and to wear compressive leggings.

The other major SE from cisplatin is tinnitus (ringing in the ears) and hearing loss.  I had mild symptoms which resolved.

If you are not getting anti-nausea meds, you need to ask your doctors for them. Cisplatin is known for being very emetic.

Good luck!
Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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debB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2013 at 9:42am
Hi Norcan,

I had the same as Lee on the same study. I did not have nausea issues to the point that it was a problem. A little rocky on day one at dinner but that it all. I found it way easier than AC to tolerate. Definitely ask about the pre-meds.

My oncologist, who is a breast oncologist, told me I would loose me hair but the nurse said only thinning. My hair was growing back at the time and it did not fall out. I don't know that it grew especially fast during that time or even thinned for that matter but it stayed put!

With the pre-meds, be aware...I didn't have a port and one day they did the IV in my hand. I had terrible burning from the meds and my veins were swollen for months. The nurses said sometimes they see that, so avoid the hand if no port!

Wishing you the best,
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2013 at 12:04pm
Hi Deb
I was told after the fact that IV Emend can be sclerosing to the veins even when the IVs go in smoothly. The arm vein they used started hurting a few days later and developed a lump. Afterwards I had Emend by mouth.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2013 at 12:12pm
Dear Norcan,

I think Lee and Deb have given you excellent feedback. I just wanted to add that, at times, BRCA1 breast cancer is extremely sensitive to cisplatin and I am sending you +++++++ vibrations that yours will respond to this drug that can be extremely difficult to tolerate. 

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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