| Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | 7 days after my first cisplatin, and I'm reeling. I can't keep food down despite continual anti-nausea meds, dropped 9 pounds. Plus, seem to have already lost my sweet/crunchy taste sensations, so fewer and fewer foods appeal at all. My kidney function started dropping so they juiced me up with potassium and fluids yesterday and today, will do again all week.
At what point would they decide not to try cisplatin #2? As bad as this has been, I don't want to shortchange my treatment. If cisplatin's not tolerated, would they switch to Cetuximab or something else???
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Oh I, Hate! Hate! Hate! to hear this. Xo
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Sometimes cisplatin doesn't play nice - did they give you meds for breakthrough nausea? Usually if you're sick they don't change - only if you have hearing issues or peripheral neuropathy. Try to stay hydrated and stick to bland foods.  hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Thanks NGK and Cheryl -- I can take ativan for breakthrough nausea, is that what you had in mind? Reassuring to hear the bar's high for backing down. Being sick is awful but it's short-term, that I can tough out --
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Yeah... Cisplatin doesn't play nice. I take it you're getting the 3 big bags? I got the smaller weekly doses so I dealt with the nasties from the day after for about 4 days. By the time Monday rolled around I was finally feeling better only to do it all over again. Unless your blood work drops really, really low or you start getting some nasty side effect like hearing loss or severe neuropathy, they'll keep you on it. If they have to switch to something else it would most likely be Carboplatin.
Hang in there!
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I agree with the above with carboplatin. If toxicities get that severe, wbc, neuropathy, kidney function, hearing, they could even stop chemo altogether, and give radiation alone. When the kidney function is low, the GFR or eGFR on the blood test is low, and believe above 90 is normal kidney function. The creatinine would be high on the blood test. Normal range for creatine is between 0.7-1.33, if you're interested in looking. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | No there should be another drug given to you.. I was prescribed 3 two were taken within the first two days (my hospital keeps patients for the night - and we are on IV the entire time - helps support the kidneys and hydration.) the third was a breakthrough nausea medication for any time use - I want to say dexamethasone - but I can't remember - Ativan is a sedative - anyone else on the board know why they were prescribed for break through nausea? I would talk to your mo. Hugs - every day is a step towards the end of treatment.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im so sorry you are struggling! This whole thing stinks, that for sure!!!
Notify your chemo oncologist about everything you have said here. You should have some very strong anti-nausea meds to help combat the nausea. There are even anti-nausea meds that come in suppository forms. Keep taking the meds even if you think you are ok, once you get behind its nearly impossible to get ahead of this.
What you are describing is partly why we stress the importance of intake. Everything that comes out needs to be put back in. Losing so much weight in such a short amount of time is not good and can quickly lead to malnutrition and dehydration. A combo of those things can earn you a stay in the hospital for a few days. Please do yourself a huge favor and push to take in a minimum of 2500 calories and 48 oz of water every single day. Water is especially important to flush the chemo out of your system. I know you are probably sitting there thinking I must be out of my mind but Im speaking from experience. I spent a couple times hospitalized for dehydration and malnutrition. Ive also watched countless others go down that same path after I warned them. Ask your doc for a prescription to get hydrated in the chemo lab several times per week. This will help you to feel better almost instantly.
Usually the doc will lower the 2nd dose before discontinuing it completely. Thats what happened with me. First dose I didnt handle it very well, 2nd cut in half and third cancelled.
Hang in there! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | I am so sorry to hear about your situation. I did chemo twice. First was induction TPF chemotherapy (Taxotere, cisPlatin, and 5-Fu 3 week interval and 3 cycles over 9 weeks.
Second time was during chemo-radiation therapy. Weekly over 7 weeks.
Here is some if not the full list of drugs administered to control the nausea and vomit issues.
emend - IV during chemo infusion decadron - dexamethasone compazine - prochlorperazine Reglan - metoclopramide Zofran - ondanastron
Rather than have the cisplation three times during chemorads I had weekly carboplatin for all 7 weeks of rads.
I guess I am lucky as I never had any nausea or vomit issues over the course of both chemos.
I did get my butt kicked in TPF though. Two of 3 rounds knocked me down for the first week, just true exhaustion. Third round was not pleasant either.
The weekly carbo did not affect me at all during rads. All the problems were related to rads but I guess the mucositis was creating the mouth and tongue ulcers and sores.
The MO felt going to carbo in lower dosage weekly would be kinder and gentler than the 3 bag cisplatin.
You can check out my blog where I listed events pretty much every day as things went along.
good luck, don
Last edited by donfoo; 09-11-2013 09:50 AM.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 92 | There is also Promethazine - Phenergan which I had in pill form and a gel I could wipe on my wrist if I was in fact tossing my cookies and couldn't take the pill.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers 3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13 rad end 5-29-13
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