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Joined: Jun 2007
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Administrator, Director of Patient Support Services
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The immunotherapy chemos are targeted towards recurrences, especially where they have mets to the lungs. This works on lung cancer patients as well. But by itself, it isnt for OC. There are many conversations on this forum about the new immunotherapy chemos. Use the search function with any of the immunotherapy drug names and you will find posts.

Here is more info (from what I wrote to another member recently w/ quotes from OCFs founder, Brian Hill).....

On the bright side, this has not been proven to be cancer yet and there are new drugs that have shown to be effective in cases like your husbands. Opdivo (nivolumab) from Bristol-Meyers and Merck's Keytruda (pembrolizumab) have fast tracked thru the trials to be available years earlier. Heres a post from Brian from 10/15 about these newer medicines..... "There is a brand new drug from Bristol Myers Squibb called Opdivo (nivolumab). I would ask your doctors about this. I watched this go through clinical trials and it was later fast tracked by the FDA for lung cancers in patients that had had previous platinum based chemo. It was targeted for non small cell lung cancers. You don't comment about your specific diagnosis, but even if yours was lightly different, this is a drug that works with your own immune system and it might open up a pathway in other lung cancers for an immune response. It had some pretty good results though it didn't work for everyone. If your cancer is a variant of this, you may still get someone to try it off label. That might be a hail Mary idea, but I've always said I'm not going to go quietly into the night. It think it is at least worth talking to your doctors about sooner rather than later." This is past all the trials and is now readily available with many patients who have found great success with these drugs. Talk to your husbands doctors about the possibility of these newer immunotherapy drugs.


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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Philip Offline OP
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Thank you. I'm learning this is a process. I'm both eager and anxious to start the treatments.
Philip


Philip
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The anxiety I had between surgery and starting radiation was awful. Looking back I now wish I had relaxed - but I was obsessed with side effects and what would happen next. My doctors have played down side effects except for swallowing and weight loss. They also let me know that when things get worse they will have new salves, mouthwashes, etc.

One thing that helped me manage the wait was setting up what would be needed - making sure I had water bottles for rinsing, creating a checklist/schedule to make sure I drink enough water, hit my daily protein target and complete swallowing exercises, etc. There is a small psychologist boost in taking action when faced with something that is totally out of our control.

I also ate all my favorite foods and gained 5 lbs. (not on purpose! Wine and pasta will do that ;))

Side effects are starting exactly as I read on the board so all my worrying was for naught. If you can relax and get lots of rest.

You will get through this and you have all our support.


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
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Philip Offline OP
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I am scheduled to have three chemotherapy treatments. My chemotherapy doctor and I discussed medications and he wants to use Carboplatin, instead of Cisplatin. Does anyone have an experience with Carboplatin? Thank you.

Philip


Philip
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I've had carboplatin my last chemoradiation treatment, which ended in January, 2014. It was the easiest chemo I had, and had 4 others before, but everyone is different. There are the usual toxicities associated with the platinum based chemo, but some are not as severe as Cisplatin, others that can be more severe, if I recall from my reading. I had slight tiredness, but I was going through Proton radiation too, and traveling each day to get there by hiring a driver, which was stressful on its own, and couldn't wait to get zapped. Besides that, I had mucucocitis and thrush start about week 2 or so, which was treated with nystatin swish and swallow, NeutraSal rinse, although it's no longer available, and having my mouth sprayed daily at the radiation center by the nurse. I was still able to eat, and basically lived on egg drop soup and Glucerna. Trying to recall what else, and probably didn't post much when going through treatments, but I'll check back.

The oncologist checked my blood levels, CBC maybe, each time before the infusion, especially the liver enzymes, to see if they were out of range, and had weekly infusions instead of the 3 you noted.

There was discussion here before about Cisplatin vs Carboplatin with a study of such I may have posted, which may include this meta-anylsis if you like reading.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4872772/

In addition, here is a drug info sheet on Carboplatin:

http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx


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






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Philip Offline OP
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Not much new to report. I have a call into my chemotherapy doctor to further discuss the pros and cons of using Carboplatin vs Cisplatin. My doctor wants to use Carboplatin because I do have measured hearing loss. I've scheduled a "second opinion" review by doctors outside my health insurance plan, even though I will almost certainly use the standard treatment of chemotherapy and radiation through my health insurance. The doctors outside my plan combine immunotherapy with the chemotherapy and radiation, or at least that is what I understand. I will post more if this is relevant after my "second opinion" exams. Having said all of this, I'm scheduled to begin my treatments on July 10th. No delay with respect to the "second opinion" exams. I am both anxious and eager to begin. I was diagnosed by my ENT doctor on May 24, 2017. This was later confirmed by the biopsy and scans. I think about how, prior to May 24th, I never heard of Carboplatin or Cisplatin. Words and drugs that were not part of my world suddenly take center stage.


Philip
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John suffered hearing loss in one ear from Cisplatin. It wasn't very bad but significant enough for the audiologist to suggest a hearing aid which John refused. He was put on carboplatin when the phase 1 clinical trial of immunotherapy did not work for him.

Cancer treatment does force us all to learn stuff which we would otherwise never even hear of.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Philip Offline OP
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Loss of hearing is one of the reasons my doctor is using Carboplatin, because I already have documented loss of hearing.


Philip
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I received a second-opinion today that has led me to more questions. Basically, the second-opinion recommended Erbitux instead of Carboplatin. No Cisplatin for me because I already have diagnosed hearing loss. Anyway, I have to make a decision. The normal standard of care at Kaiser is to use Cisplatin or Carboplatin, but they will give me Erbitux if that is what I want. Yes, it I get to choose. The problem is that the second-opinion doctor at UCSD likes Erbitux, and my Kaiser doctor likes Carboplatin. I think both doctors are good. If I choose Erbitux, it will delay the start of my radiation treatments by one week because the Erbitux needs to build up in my body and there would be more treatments over time than the three Carboplatin treatments that are scheduled. Of course, I want the radiation treatments to begin as soon as possible, so that is the choice I have to make. I would appreciate any feedback and I understand this is a holiday, but I need to let my doctors know on Wednesday. Thank you.


Philip
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I've had Erbitux, an EGFR inhibitor, with Taxotere in 2012 along with radiation, but it was for a recurrence with prior therapy failure. Now it's available as first line treatment. Two things they initially watch for is anaphylactic shock, and heart failure, which can happen in very rare cases, usually first or second dose, but is severe enough to warrant close monitoring, which they do and the patient is to report any symptoms. It seems the south east has a higher rate of negative effects, and those centers that do experience this may give smaller initial doses.

Otherwise, the worst part of Erbitux is the skin rash, which is not an indication how well the drug is working, but just a side effect of the EGFR inhibitor. Such can be treated with tetracycline antibiotics, and others. Some other side effects, like mucocitis, can be worse than it is with cisplation, and a few others, but otherwise it's tolerable, but not as easy as the Carboplatin I had, but I had the Erbitux with Taxotere. This combination was found to be superior to other treatments like Cisplatin. See below.

There is a small percentage, I believe around 5% in head and neck cancer, that have an EGFR resistance. With colorectal it's even higher like 40%, and they do KRAS gene mutation testing, and if they don't have the mutation, they don't get the Erbitux. I've since heard of some biomarker testing in head and neck cancer Patients for better selection, and medication to overcome resistance, but not sure if it's still in testing.

Sometimes it's difficult to choose between treatments when presented with two or sometimes even more different types of treatments, but once presented with the details, a timely informed decision has to be made. I don't think it would make much difference with a loading dose of Erbitux and week wait for radiation vs simultaneous start of Carboplatin and radiation, and sometimes even with that there can be a few days difference in the start of either one. The Erbitux would be sensitizing the tumors for radiation, and have an effect on it.

The Erbitux loading dose, is usually around 400mg, and 250mg weekly thereafter for the duration of radiation, 6-7 weeks. If they feel radiation delay matters any, I heard of radiation oncologists increasing the radiation dosage, plus it's best when they keep the treatment package less than 100 days for optimal treatment vs other factors.

Your concern seems to be the hearing. Carboplatin can have an effect on that too like Cisplatin, which are both platinum based. I've heard, minus already hearing impairment, hearing damage is more in large cispla doses over 100mg or accumulation of over 300mg. I've heard of other chemos being used in such hearing imparment cases as yours, but otherwise in other patients with the onset of symptoms the infusion rate can be slowed, chemo switched or stopped altogether to prevent permanent hearing loss, and should be followed by an audiologist before, during and after treatment.

http://www.cancernetwork.com/head-neck-cancer/docetaxel-regimen-tops-cisplatin-head-and-neck-cancer

I hope this helps


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






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