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Maria,

Cisplatin has been the "Gold Standard" chemo of choice for OC for many years and the comparison to Carbo is when all else is equal. (no I haven't read those studies, at least in a long while) My point is that now all things are not equal as he and his doc's know that Cis has damaged his hearing permanently and adding more Cis can only, in my opinion, increase that damage so in this case Carbo now becaomes the chemo of least concern.


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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Ed H Offline OP
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Thanks everyone. I will f/u with my doc. My protocol is two doses of cisplatin three weeks apart. The doc reports that the half-does should have very little chance of causing further hearing loss. He has completed published research on this topic and is a nationally recognized expert r/t HPV-related oral cancers, so I hope he is right. I could not find clear/definitive info on this subject in the literature, but doc's have access to peer-derived info, research presented at conferences, and other resources I cannot access. I will post the outcome and how it works out for me. Thanks again.


Ed H, NE Ohio
SCC BOT with lymph node involvement, HPV+, diagnosed 7/12
Radiation and Cisplatin
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Ed, yes, that would be very helpful if you let us know the results. Also, ask for a copy of his article - doesn't hurt to ask. Regarding access to journals, if you have doctor friends OR university students / staff, they will be able to pull articles for you via their institution's subscriptions.


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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klo Offline
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Hi Ed,

I have access to most articles (abstracts at least) and can find nothing that tests whether smaller doses causes no further damage. I was under the impression that ANY further doses would cause further damage but maybe not as much???

What jumps out for me is that your doctor is dismissing carboplatin which is proven in this setting, but is prepared to "underdose" you with cisplatin. Does he know this dose works? And if so, is he confident the effect would be better than carboplatin? This is the question that I would be asking.

Have you already had two doses of cisplatin? There are a few studies where patients could not complete their planned 3 doses and their outcomes were quite similar to those that did all 3.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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My husband had weekly Cisplatin and now has permanent hearing loss. It did not show up until his last week of treatments.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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It has been normal for doctors to switch people off of Cisplatin immediately upon these kinds of problems to Carboplatin. As you can see, many here have had that experience and are doing fine. I have searched the medical databases that I have access to (all the major ones) and can find 0 zero articles that speak to dealing with this by reducing dosage. I don't know your particular situation, I am not a doctor, but if I were you I would not do this.

I see the possible ramifications as possibly being incomplete primary treatment, and or loss of hearing completely. Not everyone that takes Cisplatin has issues with it, but every doctor I have ever discussed this with say that they remove their patients immediately as soon as the ringing in the ears issue comes up. If there were not a suitable alternative, then I could understand the doctors insistence. In this case I do not.

Remember that you are the controller of your treatments, though we all know less than our treating doctors as a rule, and like it or not have to put our faith in them. But that does not mean that they know everything. If your doctor has a peer reviewed scientific article that he would like to share with the foundation substantiating his treatment idea, I would be most interested in reading it and adding it to our datable of relevant articles on the OCF web site.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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This is an interesting discussion and points up the principal that something that sounds reasonable should be followed on by actual data - if available.


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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Posts: 153
"OCF Canuck, across the pond"
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I believe I suffered *late* onset side effects from my Cisplatin (3 doses, third one nearly killed me, in ways unrelated to this thread). It was after my treatment was complete that I developed peripheral neuropathy in the soles of my feet, the infamous 'electric tingle' when looking down at my toes, and, hyperacusis (over sensitivity to 'clanging' noises: http://en.wikipedia.org/wiki/Hyperacusis ).

In my case, however, the nerve damage was temporary and these symptoms have all for the most part abated.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
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Ed H Offline OP
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Thanks to all who have responded. I, too, had the hyperacusis mentioned above (in my case, oversensitivity to loud noises in general and some in particular) along with increased tinnitus and high frequency hearing loss. My treatment protocol was two rounds of cisplatin, at the beginning and again three weeks in. The hearing changes were evident within four days of the first treatment.

I decided to go with my doctor's recommendation re: a second, lower dose of cisplatin. My tinnitus worsened slightly and the hyperacusis came back, but last time it subsided somewhat so I hope that may happen again. I explored his support for this approach in more detail and it relates to the results they are getting with HPV BOT cancers at the Cleveland Clinic, which is encouraging at 94% at this point in their study. They are reluctant to use the carboplatin, it seems, because it has not matched this track record in their experience. However, knowing what I know now, if I was starting again I would probably opt for the carboplatin, but in my case the damage was done after the first treatment.

On the plus side, chemo is done and I've only two more rad tx's to go. The small lymph tumors are no longer palpable or visible on PET and CT scans, and the primary BOT tumor and a 4cm neck metastasis have both shrunk by more than 50% in size and metabolic activity. The mucous is hell and I miss taste and normal eating, but as a friend pointed out, I am blessed to have a form of cancer that responds to treatment so that I will be able to reminisce later about how rough the treatment was. I wish everyone out there the best and will continue to be actively involved in the forums, which have been a tremendous source of support and reassurance--THANK YOU ALL!


Ed H, NE Ohio
SCC BOT with lymph node involvement, HPV+, diagnosed 7/12
Radiation and Cisplatin
Joined: Jul 2012
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I finally made my way to the boards. I recieved Cisplatin last Monday and I am still in its depths. Can anyone give a timeframe for the nausea to go away. First few days weren't bad,then it hit me like a ton of bricks. I can take two bites and be full. Usually the sickness comes late at night. Hate to be bothersome and call the the docs over the weekends but i'm borderline dehydrated if today doesn't go better. Thanks for the info ed. those percentages are promising. i had been debating carbo.
i start 8/35 rads tomorrow and not another chemo till the first.
Ear pain is finally gone. Thats a blessing. now if i could just get some nutrition in me.


Age 35, Former smoker/drinker HPV+
Ear Ache 5/12
GP for ear ache 6/18
ENT for ear ache 7/12
CT shows cancer 7/12
Biopsy 8/12
diagnosed SCC
Base of tongue right side
Barely crossed midline
Nodes involved
PEG 9/12
35 IMRT start Sept 6th
Cisplastin x3 1 down 2 to go
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