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Went for appt yesterday with oncologists. They are suggesting IMRT radiation x 33 treatments. Also suggested was Cisplatin x 3. I asked about breaking up the Cisplatin and he said he does not endorse that way of doing it.

So, I have a question - to those who have had Cisplatin - Was it bad? Does it make the radiation real bad? He said the effects last eight weeks after treatment - which effects? Does the vomiting last that long?

I am debating on whether to say yes or no on this part. Thanks for any input.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Can you clarify what you meant by breaking up?
What is meant the effect last eight weeks after treatment? Those of the chemo or those of the radiation? Radiation effects last much longer and have most likely some permanent consequences.

I can not comment on the large dosage, I had the weakly treatment and only 2 at that before we had to switch carboplatin. Up to that point the effect of cisplatin were not severe at all.

M



M




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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I had cisplatin x 2 and if I were to have it again I would know how to combat what was my biggest problem - my blood pressure! My B.P. dropped like a rock and I became like one of those "fainting goats" (fall over at the sound of a loud noise). This problem made me feel weak, dizzy and very tentative until we figured out that I needed to lose my B.P. medication.

In the end, they decided only 2 cisplatin seeing as (in the MO's words) the surgery was "somewhat successful"...lol I do get a charge out of hearing other specialties grudgingly acknowledged.

You'll get thru it. Anti nausea meds are expensive but well worth it. My advice would be if you take b.p. medication - watch it closely during chemo. I didn't see any difference in the radiation itself as opposed to the first time I had radiation.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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I would seek a second opinion if I were you. More and more MO's do endorse smaller weekly doses of cisplatin. There is no reduction in efficacy and considerably lower risk of damaging side effects like neuropathy and hearing loss.

During my infusions, I received Aloxi and Emend and had minimal trouble with nausea and never had chemotherapy induced vomiting.

http://www.aloxi.com/cinvHome.aspx

http://www.emend.com/aprepitant/emend/consumer/index.jsp



Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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A second opinion is always a good idea. I had weekly Cisplatin for 8 weeks, and really came through very well. I really had very few reactions to chemo -- most were due to radiation and related medications, though I suppose some of the side effects were contributed to by both.

Our CCC says that weekly Cisplatin has no decrease in efficacy, and does reduce the more severe toxicities associated with larger doses.


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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My husband had 3 mega doses of Cisplatin. The MO ignored our side effects but he made it thru that initial treatment. Numbness, hearing, mouth sores and ringing in the ears.

Then they wanted to do additional chemo and that was when the bottom fell out for us. A 4th mega dose of Cisplatin and IV 5FU resulted in a chemical burn. My husband hasnt had chemo since March and is really having a hard time.

Everyday I wish I had known to ask for the weekly dose. And said what the hell are you thinking when he agreed to the extra chemo.

But everyone is different. It is my understanding that if they think you can take the larger dose then that is what they do because it has the better results.

Good luck and eat all you can for the next few weeks.
cray08

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People tend to do what they are used to.... including the chemo regimen.
It stands to reason that a CCC is generally more up to date in treatment modalities than a small place, although there are exception to this too.

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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I had Cis x 3 and the first one was a piece of cake. The second was like being run over by a VW and the third was the worst. I suffered permanent high frequency hearing loss. I haven't gotten hearing aids but I do not hear many things during the course of a day. The nausea was horrific and nothing seemed to work for me from the second one forward. Certainly the added doses of radiation combined with the chemo didn't help but the rad was a given. Now that was 2 years ago and since then, perhaps starting a year ago, I have read many posts here where they were given weekly doses of cis and I don't remember any saying they suffered the same side effects as me nor do I remember any saying their Tx was determined to be sub par. I would seek another point of view if possible.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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You may want to ask if they can skip Cisplatin altogether. My CCC team recommended just Erbitux mainly because they had seen too many patients with David's side effects or worse. It was a lot less toxic and more focused on the cancer than cisplatin. I agree with all the prior advice to get a second opinion if you have doubts


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I can't find it now, but my treatment plan of Erbitux and cisplatin was based on a study that is currently underway to prove that this combination would be most effective for me. My medical team felt strongly that it would soon be 'the gold standard.'

I'll keep looking for the study - I found it once before...


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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