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Welcome to OCF! The 3 large doses of cisplatin seem to cause more nausea while the smaller weekly doses are easier to tolerate. I do not know of any research proving the better effectiveness of either method. Chemo is used to help boost the radiation, alone it will not cure the cancer. If I was offered a choice and know now what i didnt then, I would have chosen the smaller weekly doses.

If he will be getting cisplatin, make sure to have a baseline hearing test done as well as a full blood count including thyroid. You may need these results later to use as a reference of where his numbers should be. Many who have had cisplatin report high frequency hearing loss which is permanent (not me).


Christine
SCC 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 smile
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I was not aware of that "small study" comparing the weekly to the Three Big Bag method of administering Cis but our experience on this site indicates that members experienced less side effects with the weekly than the standard 3 bag method. Many who sign up for the 3 bag method never get the 3rd bag because of the severe side effects from the first 2 so consider that as well. The goal of this Tx is to kill the cancer without killing the patient and believe me this Tx takes it to the wire.

Welcome to the best OC site in the world. We will be with you 2 as long as you want.


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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"OCF Canuck"
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I had the 3 weekly despite being told it was likely I was cured - this is the protocol for my hospital - I had minor nausea that it -,I did miss the last dose as my WBC count was low and verything was off a week. But I did fine on it - some have a bad time - depends on the person. Is you husband normally sensitive to meds? have health problems? This would b a factor too. One thing I did note you said niversity medical vs private hospital. Your husband should be treated at a comprehensive cancer center. Good luck...


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
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Ok, here's another question to ask:
"How many patients do you treat with head and neck cancer every year"

Statistically, results are better at institutions that see greater numbers of patients. Thats not the route we took because of the quality of our young ENT, so the doctors themselves are also a factor. This is why so many are advising a CCC facility. Nothing says you can't get a third opinion.

One other thing to remember in the decision making process - if you are anxious and distressed, you can't do math in your head, and everything is going to look more dire than it may actually be. If you start feeling panicked, so SOMETHING ELSE for a while. I'm going to send you a PM - check My Stuff when the little email flashes.



CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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I had the three doses as well, and it was pretty rough, but I made it through. I stilll think that the long-term side effects from radiation were the worse. I guess I didn't realize how rough the 3 doses were until I saw a new MO. When he was looking over my records he commented that he was surprised that I made it through the 3 doses as well as I had. He also told me that many folks don't make it to the third dose. I guess I'm just a tough old broad!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Kevin only had 2 tx of the Cistplatin, Taxotere and 5fu. They wanted to do Carboplatin (sp) with the Erbitux and IMRT, but he declined. It was his decision and I let him make it. Now, of course he is doubting that decision.
As everyone has said, the smaller doses are going to be easier to handle. If he loses some hearing, that's what they make hearing aides for. Kevin is now in the process of testing at his work in Alaska because of the hearing loss. They have to prove it is from the Cistplatin and not an OSHA recordable incident. Kind of a hassle but you gotta jump through the hoops.
Hope that you can find some peace and make a decision soon. Oh, we also did NOT have surgery and had multiple nodes involved. However only one of the nodes was tested. Our MO did not think surgery was necessary if we hit it with the big chemos. He said he wanted him to keep the nodes for his immune system later. I know most everyone has had surgery, but we did not.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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How horrible will the effects of three cisplatin treatments be?


Wife to 58 year otherwise very healthy husband(and the sweetest man in the world). T1N2b SCC. June 2012 TORS Tonsillectomy/mod neck dissection and 10 lymph nodes removed. Path showing 3 bundled nodes, slight ECE. IMRT 30x and Cisplatin 2x. PEG for 10 wks. CT 12/12,2/13,5/1 3,9/13-allclear
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Nausea was my worse side effect. The 1st was OK but the 2nd was really bad and the third was worse. Combination of more rads, weight loss and chemical imbalances I guess. I did loose hearing in the high frequency range which is permanent and contrary to what Kathy above says I tried (very expensive, state of the art)hearing aids once and gave them back within a week. I do not look forward to the day when I have to wear them.

My MO told me after realizing my hearing had been affected that "had he known he would have switched me to Carboplatin because it's just as effective as Cis but without the nasty side effects." Certainly SCREAMS THE QUESTION...then WHY....Never could get a good answer why Carbo isn't used first other than I did get another MO at Moffitt tell me that there have not been adequate studies to prove that. Remember I was treated 6 years ago.


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.
Joined: Dec 2010
Posts: 291
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I think that 6 smaller chemo treatments are the way hospitals are going in order to make it possible for patients to get all of the chemo. I had 6 so cannot speak to 3, but apparently the longer times are much more difficult for the body. I read somewhere months ago about one study which showed that 3 vs 6 cisplatin for head & neck patients made no difference in outcome, or at least for the times considered in the study. But I can't provide the citation for you unfortunately. I see that I may have read the same one your doctor points out.

Regarding surgery for oral cancer, if it is oral cavity cancer rather than oropharyngeal, surgery is the first line of treatment. This is according to the NCCN guidelines, not my opinion necessarily. Definitive radiation is not supposed to work very well with cancer of the oral cavity, perhaps because it is HPV negative. I'll leave that part to the experts.

My PA at MD Anderson told me cisplatin affected hearing depending on where the heaviest radiation was given, or let's say that is what he has noticed among patients. I have minor hearing loss in the very highest range, but I'm told it really won't affect my functional hearing, and I agree. My husband who is not the patient has some hearing loss in my opinion. I've suggested he get tested instead of me, but it hasn't gone over well. Yeah, David, I'm with you that hearing aids aren't all they are cracked up to be, hope your hearing does not decline.

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Posts: 805
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David,
What did you not like about the hearing aide? Just wondering for when the time comes.
Thanks
We got our magazine today...could the picture have been any BIGGER??!! Sheesh!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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