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#194020 - 03/13/17 06:44 PM Finding an oncologist to treat recurrance
dmbart Offline
Member

Registered: 05/05/16
Posts: 14
I have the same type of question. I was diagnosed with stage 4 SCC of the maxilla and maxillary sinus last year. I choose not to do surgery but went through proton radiation. I had another biopsy in Feb and cancer cells were found in the maxilla, don't really know if the proton didn't get it or if it came back within 5 months. At this point I would like to try some of the new immuno or targeted therapy drugs which I believe are only available after chemo or in a clinical trial. I may qualify for one trial but have will get extreme chemo and the other half will get the immuno drug. I'm also considering just go ahead and do the chemo.

Now for my question, there are oncologist that advertise they treat head and neck SCC along with a host of other types of cancer. These doctors are closer to our home while the closest NCI cancer center is 100 miles away. Based on your experience would you go to someone who specializes in head and neck SCC or is a general oncologist okay?

Thanks for your experience/thoughts.
_________________________
DMB
SCC of right maxilla & nasal cavity, stage 4a, 3/10/2016
42 proton treatment completed 9/1/2016

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#194021 - 03/13/17 07:39 PM Re: Finding an oncologist to treat recurrance [Re: dmbart]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9435
Loc: PA
Its not an easy decision to select your treatment team and facility. This is especially true Since you have OC again only a short time after finishing treatment for it. In my opinion your case is complicated and needs to be treated. To have this taken care of the right way and to give you the best chances of eliminating OC for good, I suggest seeking out the NCI center even though it isnt close by. Your treatment options could be limited since you have just finished rads. You should make your decision quickly as recurrences tend to grow very fast. Same is true even if your cancer is from some cancer cells remaining after proton therapy.

The new opdivo (nivolumab) immunotherapy chemo has been fast-tracked thru the FDA and is readily available to certain OC patients. I dont know of any of the others that are being tested in trials are effective with OC. So far, the only drug Ive heard that works for OC is opdivo and thats is only working with lung mets patients. Chemo by itself has always been used for palliative care, to shrink a tumor.

Wishing you all the very best with everything. Feel free to ask questions and we will try out best to help you. Please keep us posted on your progress. Good luck!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#194022 - 03/13/17 09:45 PM Re: Finding an oncologist to treat recurrance [Re: ChristineB]
dmbart Offline
Member

Registered: 05/05/16
Posts: 14
Thanks Christine you have always been very responsive to questions. Opidivo is the one immuno clinical trial that I might qualify for. Isn't Keytruda about the same as Opidivo?
_________________________
DMB
SCC of right maxilla & nasal cavity, stage 4a, 3/10/2016
42 proton treatment completed 9/1/2016

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#194023 - 03/14/17 12:38 AM Re: Finding an oncologist to treat recurrance [Re: dmbart]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9435
Loc: PA
You're welcome! I always try to help as much as possible.

Yes opdivo and keytruda are the same thing, it may also be known as nivolumab or pembrolizumab‎. I think its a couple manufacturers and generic names. Im curious why you mention doing a clinical trial when its available to patients? Im not always aware of what trials are going on but I thought that one ended a while back.

Heres a few threads you may find helpful. We had a few discussions about these new chemos. Brian has given us some of the first info available about them. I have also included a link to clinical trials that may be helpful. I still would advise you to not waste any time. Go to the best treatment facility you can, start treatment to eliminate the cancer for good. Theres help available for patients who travel for their treatments. Let me know if you need that info.


New Immunotherapy Opdivo

Brians first info on PDL-1 trial

Here is a list of Clinical Trials. Clinical Trials

_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#194030 - 03/14/17 01:02 PM Re: Finding an oncologist to treat recurrance [Re: dmbart]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2935
Loc: NY
I'm sorry to hear of your recurrence, dmbart!

As mentioned, I would definitely recommend a consultation at a NCI CCC or CC in addition too, any NCCN member hospital or other top rated hospital listed in the U.S. News Reports best hospital, highly rated in ENTand Cancer, that have high volume you can go to, who may come up with a curative or different type treatment. Sometimes they will plan, and oversee your treatment, work with your doctors, and let you do treatment locally. Many also have housing available, suggested or are close to an ACS Hope Lodge, where I stayed for 6 weeks for one treatment, so locations may not be limited to one location, but may be by insurance and others.

At one point of my many recurrence, maybe 5th, total 7, I was presented with limited re-treatment options. I searched out new doctors at a CCC, who treated me much further than anyone recommended or knew, inckuding myself. My last treatment, and cancer three years ago, was presented by my ENT and Radiologist at the ASTRO Symposium for complicated head and neck cancer cases.

As mentioned, Keytruda and Opdiva were approved last year by the FDA for treatment for recurrent or metastic squamous cell head and neck cancer following progression on platinum chemotherapy. They pretty much work the same, from my understanding. What may influence a doctor suggesting either one is their experience with one particlar drug or invokvent with a clinical trial. Immunotherapies are not curative, at this time, but sime have seen durable responses. Only Surgery, Radiation, and Chemoradiation or any cobinatuon are curative, and not chemo alone. Usually with recurrences, the first option is surgery, with or without radiation or Chemoradiation.

There are a hundred immunotherapy clinical trials I've seen (see below). What their also working on is combining different immunothepies, some with conventonal chemotherapy and some radiation, which make the immunotherapy work better, but may also may increase toxicities.

The recommended minimum time for re-radiation I've seen is 6 months, and had re-irridation several times after a year, total 5x to the same area with 3 different tyoes, but many other factors, and patient selection are involved, so that may be an option to discus.

In addition to Christine's links, here is a link to the Cancer Research Institute, CRI, that have listed many different types of immunotherapy clinical trials for Head and Neck Cancer:

http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/head-and-neck-cancer

Good luck
_________________________
10/09 PET T1N2bM0 Tonsil
11/09 Taxotere Cisplatin 5-FU IC Hosp 6 Months
07/10 PET
08/10 PET
01/11 35 IMRT 70Gy
06/11 30 HBO
07/11 PET
08/11 RND PNI
04/12 PET
06/12 SND PNI LVI
07/12 CT
08/12 RND Pec Flap Graft, IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotete Erbitux
03/13 PET
08/13 PET
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carbo
06/14 PET
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandiblectomy Fibular Free Flap







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#194031 - 03/14/17 02:14 PM Re: Finding an oncologist to treat recurrance [Re: dmbart]
gmcraft Online   sad
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Registered: 10/24/12
Posts: 774
Loc: Toronto, Canada
Christine and PaulB have given you a lot of good information, the only thing I can add is make sure you find out what phase (1, 2, 3 or 4) the trial suggested to you is. You would like to find out if it is a double-blind trial. My husband was in two clinical trials. The first was for PDL 1, back in 2014. It was then a phase 1 trial. There were about thirty patients on that trial, and they had different cancers. According to our MO, who is in charge of drug development at the hospital, some patients showed tumor reduction, but it did not help my husband. Clinical trials are considered "palliative" in nature.

The second trial was a phase 2 trial for Selinexor which had some harsh side effects for John and he was eventually demitted from the trial.

With every clinical trial, there are conditions laid out by the drug developer the patient has to meet. For example, for the PDL 1 trial, there was some concern because John had Sjogren's Syndrome which is an auto-immune condition. He also was required to have a lung biopsy which itself carrried some risk. It was the developer who decided on eligibility, not the hospital or the doctor. The process of determining eligibility took a few weeks and so there was hope but also fear of getting "no" for an answer.

The one good thing was John was very closely monitored for all that time he was on the trials. We got a lot more face time with the doctors than otherwise.

I wish you all the very best. Please do keep posting to let us know how you are doing.


Edited by gmcraft (03/14/17 02:14 PM)
_________________________
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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