I had right BOT HPV+ diagnosed in August 6, 2016. That was "treated" with 35 rads and 9 weeks of Erbitux. As of Feb. or March 2017, I resumed a normal life minus side effects of radiation.

The cancer recurred on August 2 2018 in right BOT and tonsil. A smooth talking SO at my treatment facility promised he'll "Cure" me, I thought to myself he may add 2 or 3 years to my life, and went ahead with him. Either he blew it or our MRI and Pet scan machines are useless, because he told me the tumor was 10 times the volume of what the MRI showed! In any case operation failed!

I started seeing an MO who is more real than the SO, he gave me a choice between immunotherapy with 20% chance or chemo with 40% chance of success. I started immunotherapy with Opdivo around late January of this year, with 4 suspect areas around the throat and mouth. After 6 sessions of Opdivo he noticed a new tumor on RHS of my neck and stopped Opdivo. With MRI, Pet scan and biopsy, he told me there is another one in my mouth which is 2.5 cm.

He said we need to switch to chemo and we did on 3/14/19. He gave me Taxol (Paclitaxel), Carboplatin (Paraplatin) and Erbitux (Cetuximab). I asked him about Erbitux being only targeted therapy drug and not a chemo, and he told me let me be the doc! After 2 sessions of chemo I got very sick and was hospitalized due to very low count of Neutrophil at 210 (A type of white blood cell) and in hospital they gave me anibiotics round the clock and Neupogen to boost neutrophil production, and I went all the way up to 1780 or 1.78 , then they released me. I did a 3rd chemo after release and my neutrophil dropped to 993 or 0.993 and my MO stopped the next chemo, told me he will resume chemo when I am above 1 or 1000. As of now I have not gone above 1 (0.991 and 0.985) and no chemo. That is the only "treatment" I am getting is 3 shots of Neupogen in 3 consecutive days, hoping to get it to 1.

The visible tumor has gone from original size of 1.2 cm to 1.8 cm (50% increase), and when I asked the doc if the one in my mouth area has increased the same percent, heh said most possibly yes. I asked him this past Tuesday if there is anything else that he can do, and he said nothing else. Even with chemo on 3/13/19 he told me that statistically my mean survival time is 9 months (12/13/19), I don't dare asking him what it has become now with no treatment. When I told him about 12/13/19, being statiscally ther end of me, he got upset an d told me that is statistics, not necessarilly you. I had to remind him that I was speaking statistically too. He also reminded me that I don't qualify for any good clinical trial, if I have not finished chemo.

He also told me that his norm for stopping chemo is neutrophil of 1.5 (1500). The only reason he dropped mine to 1 is due to the fact that he has gone all the way back to 2012 and observed that I have had a lower than average Neutraphil count since then, the highest I had was 1.257, and I am low both on white and red blood cells. He sent me to a hematologist. The hematologist told me he can do a bone marrow exam (biopsy and aspiration) to confirm or deny it. I asked what if I my bone marrow does not produce enough cells? He told me we cannot do much. I don't dare mention blood transfusI don't dare ion to him, because I know he'll get very insulted.

So I have 2 choices: Choice 1 is to do nothing and wait until I die: Not a good one

Choice 2: I had gone to UCF about 3 months ago for a 2nd opinion, and the MO told me that my MO is 1 of the leaders in the field, so at this point I don't see much value in a 2nd Opinion.

Is there anyone who can help me with my problem? I really appreciate any Help from people who have/had a recurrence.

Thank you

Mehrdad357.

Welcome to OCF! Im so sorry to read about what you are currently going thru. Your choices are not something anyone would want to make.

Just remember the doctors work for you! You should be comfortable with your doctor to have conversations and ask questions when you dont understand something. Not all doctors have the best bedside manner which makes it hard to have open, truthful conversations. I once went to a doctor who was the top doc within 100 miles of my location in the Northeast US. At my appointment he came in like a big shot with his interns following behind him as he explained everything in medical terms never speaking to me directly, instead he instructed his students to ask me all the questions they wanted and to get the necessary info they needed from me. I found the entire thing upsetting like I was on an assembly line being worked on and that was only for a second opinion. Moral to my story is sometimes the most brilliant doctors have a terrible bedside manner and arent able to effectively communicate with patients.

I suggest going for another opinion ASAP! Seek out one or two (or more) of the US's top comprehensive cancer centers (CCCs). The top CCCs attract the best and brightest specialists who all work together to build a treatment plan. At their meeting (called a tumor board meeting) all the docs work together so they're all on the same page. This makes a big difference by avoiding any lack of communication between doctors at different facilities. The patient and caregiver are allowed to attend the tumor board meeting too. If at all possible try your best to attend!!! You are part of the tumor board meeting too. You can even talk to the doctors and ask questions. CCCs are the best places to treat complex cases and recurrences. The doctors at CCCs work with OC patients every day, not a couple times a year found at smaller local hospitals. Please do not let location seal your fate. There are several places that help cancer patients with housing, flights, other transportation either free or very low cost. Over the years, people have told me patients and their caregiver stay for free, $5 or $7 a night at special medical housing units close to all the top CCCs. These housing facilities give free transportation to and from the treatment center. The medical housing sometimes even provides food for patients and their caregivers. Help is out there, sometimes it takes some digging but its worth the effort to overcome this horrible disease. At least it was worth it for me.

Your post brought back some memories of very difficult times I went thru in 2009. Some of my hardest days were when I was diagnosed with oral cancer (OC) for the third time in 3 years, but this time it was Stage IV. My chances of beating the OC in 2009 were very slim. So slim that my ENT sat down with me and began a very serious talk by telling me to get my affairs in order as soon as possible. I remember one thing I asked... "what about the first 2 times Ive had OC? They certainly werent easy at all and this time its even worse?" My doc replied those first 2 times of having OC were just a warm up of more serious ones to come and this is it. After much consideration I decided not to get treated. I was feeling the best I had in many years, when that diagnosis came in I thought it had to be wrong... I felt strong and healthy. While I felt great my plan was I would live my life out with my teenagers by preparing them to have a life without me. I reasoned it would be easier on my children if I could be with them to get them ready for their only parent to die. That was one of the hardest decisions I ever had to make. The wonderful, caring people of OCF would not accept my decision. I eventually called Brian (OCFs founder) asking if he ever met anyone who went thru OC 3 times and survived, which he said he knew of some 3 timers. The numerous OCF friends from all over the world hounded me and drilled it into my head if I dont try then Im giving up. They said I cant quit until I put some effort into fighting. Well I am 10 years later, which tells you I finally listened and went thru with the major surgery that removed half of my lower jaw. Somehow, against all odds and major complications after surgery, and I was going into this with a much weakened body from already going thru OC twice before. If I had it to do over again I still would go thru with the surgery even though I had a heck of a recovery after my 2 month hospital stay and Im now disfigured from complications. Im telling you this to let you know recurrences as you already know are NOT easy to handle. Those hard decisions must be made, the sooner the better for seeking further treatment. My advice is to try getting into a CCC where a team of top specialists will create a treatment plan that hopefully will work. It certainly cant hurt to keep going and look for a cure against all odds. I hope one day you will have a success story like mine. I have links for CCCs and the best hospitals in the US.

Best wishes with everything!!! I hope you will continue to post and let us know your progress.

NCI list of CCCs

US News Best Hospitals List

Main OCF Site, Financial help for OC patients including flights, lodging, etc

Hello Christine,

Thanks a lot for your very useful and thorough response. I need my son's help to find CCC's. He is 29 and very much involved and concerned with
my treatment, and gets these things done much faster than I. I agree with most of your response, just a few questions:

- My doctor is not bad. He just gets a bit irritated when I question his diagnosis and treatment plan, but right now he has no treatment
plan.

- Which means that I should look for a 2nd opinion ASAP as you suggested.
When starting out he did tell me that he called a tumor board meeting and the overall suggestion was to start with immunotherapy and if that did not
work go to chemo. But at my facility the patient is not invited to tumor board meeting.

- Can you please give me a list of CCC hospitals?

Thank you very much for now, and I hope to hear from you again.

I also have a 29 year old son He helps me tremendously even though he has his hands full juggling a roughly 70 hour work week, wife, newborn baby who doesnt sleep but sure can cry all night, house, etc. I struggle to keep up with everything high tech, even devices so you arent alone with your child being better at those things. Sometimes I surprise myself and figure things out like how to best use my TIVO, but I find it impossible to figure out all the settings on my new 4k TV or even worse to navigate thru all the social media options (thats another long story!!!).

The list of CCCs is the first link I added to the end of my previous post titled NCI list of CCCs. When I checked the first link early this morning I was disappointed to see it wasnt working. I just used it last night when I checked it after adding it to my post. Ive tried numerous times to pull up the CCC list but Im not able to even get onto their website. Being high tech challenged, I do not know what happened that these important pages are suddenly not working. Hopefully this is fixed very soon. I would greatly appreciate if any of our members could help out with this!!! If anyone has a recent CCC list, please copy/paste it and pass it along to me thru a private message (PM). As far as the other links go, they both work. The second link is US News Best Hospitals list. The third link is to our main OCF site, specifically the financial help section. If you would like to read more about OC use the last link to go to our Understanding Oral Cancer section. The Understanding section is jam packed with info where you can learn anything and everything about being diagnosed, different treatments, HPV, nutrition, risk factors, etc.

Im sorry if I gave the impression your current doctor isnt well qualified, or not a good doctor. That was definitely NOT my intent at all! What I was trying to convey is.... everyone with a serious medical condition needs to go for a 2nd, 3rd or even more opinion until they find the right fit with the best doctor and facility that works for them. Not all doctors are capable of open, honest replies to their patients questions which only leads to a lack of communication and misinterpretations. Im sure with how complex your case is it would be difficult for anyone who does not have a medical background to understand how everything fits together and the importance of all details no matter how minor.

To elaborate on hospitals, CCCs and which ones are best I'll explain things in more detail. First, Im sorry but off the top of my head I do not know if the facility you mentioned is on the list of CCCs or best hospitals. With the cancer.gov website not working, I cant even look if its a CCC. Without having a medical background I am completely unqualified to give an opinion or even a suggestion of any specific doctor or treatment center. There are many websites out there that rate doctors and hospitals using their own rating systems. OCF is not one of them. We are a science based organization that is impartial when it comes to comparing and rating doctors and/or treatment facilities. We even turn away advertising opportunities which would bring in substantial sums to ensure we remain 100% unbiased with our recommendations. We actually prefer to avoid any discussions of specific doctors and/or hospitals as we do not have enough info about any of them to correctly base an educated, unbiased opinion. We also cant allow those kinds of discussions (both good or bad) to be posted on the OCF forum where they're visible for the world to see. In todays world allowing doctors or facilities names to be publicly discussed, regardless if its positive or negative can become grounds for costly legal action. OCF is a very small non-profit organization with a world-wide presence that operates on a shoe-string budget with counting on our many generous volunteers working together for a common cause. Money spent on legal issues could be put to much better use funding oral cancer research. If using an online rating website please be extra careful, Ive seen some medical rating sites that are not impartial. They sometimes include patient survey results and patient and/or caregiver opinions which does NOT prove which organizations are the best. For example, if you ask 100 successfully treated cancer patients what is the best doctor and facility to get treated for XYZ cancer... 95% will say their doctor and hospital is the "absolute best". This is one patients opinion that isnt based on facts, its each patients preference which shouldnt be included on medical rating websites. OCF advises a CCC (especially for complicated cases like yours) is the best treatment facility... this has been scientifically proven! CCC patients have better outcome rates than those treated at smaller regional/local facilities. I know the top CCCs in no particular order are Moffitt, MD Anderson, Sloan Kettering, and Johns Hopkins to name a few. To complicate matters further for patients, trying to figure out the top facilities can get tricky! This is especially true when for-profit cancer hospitals use terms like cancer treatment center in their name or shortly after. The for-profit organizations treating cancer are NOT at all recommended as they "patient shop" and will only take on patients they're confident they can cure. These for-profit facilities will automatically refuse to treat patients who have certain conditions. Ive noticed those facilities will advertise heavily making it appear as if they're the very best place to treat cancer patients but reality is... they are not!!!. Ive even seen these for-profit organizations pop up at the top of search results when trying to find the CCCs. This sort of thing is why the CCC list is so important for patients and caregivers to use as a guide to finding the best medical care they can get.

As far as treatment options go... by itself chemo is used for palliative care. By itself chemo will not eliminate the cancer completely. It may shrink it which gives you more time to find something that works for your situation. The new immunotherapy drugs like Opdivo could be an option if you qualify for it. Theres certain markers in patients the doctors look for to see if that would work for their patients. Unfortunately even with many years of research the only ways to effectively eliminate the OC 100% is radiation with/without chemo an/or surgery. Basically, patients going thru rads are given chemo to make the radiation work better. Im sorry but as a OC patient/survivor I dont have all the in depth info about this but you can learn considerably more on our main OCF site.

Wishing you all the very best!!! Hopefully your son is able to assist you very soon with finding other options.

I found this list on Wikipedia. I've shown centers in CA. Is that where you live, Mehrdad357? Here's the link:
https://en.wikipedia.org/wiki/NCI-designated_Cancer_Center

California (8):
Chao Family Comprehensive Cancer Center at the University of California, Irvine
City of Hope National Medical Center (Duarte) (independent)
UCLA Jonsson Comprehensive Cancer Center at the University of California, Los Angeles
UC San Diego Moores Cancer Center at University of California, San Diego
UCSF Helen Diller Family Comprehensive Cancer Center at the University of California, San Francisco
UC Davis Comprehensive Cancer Center at the University of California, Davis (Sacramento)
USC Norris Comprehensive Cancer Center at the University of Southern California (Los Angeles)
Stanford Cancer Institute (Stanford, CA)[6]

Mehtdad357,

I’m sorry to hear of your troubles! It sort of reminded me of my case, when I had 7 recurrences. I was given minimal treatment options after my first chemo, and changed my team three times at different hospitals. My last dr and hospital did treatment I never dreamed of, and then Proton Radiation and Chemo, after surgery and IORT, an internal radiation, cured me!

Initially, from my first week of high dose chemo in 2009, I was down for the count, and hospitalized for 6 months with no further treatment options, so I believe it was the start of my 6 recurrences, which was persistent. It took me 10 years to be considered cancer free this past winter, after 5 years of no recurrences.

If I didn’t change teams, I don’t know what would have happened. As Christine mentioned, you have to seek other options. Travel is not a problem, and it may not be costly. Once I stayed at Hope Lodge in Manhattan for free, except food. Hope Lodge is even better than many top hotels! You can come to NYC if you want, among other places, but we have the most top hospitals, maybe Boston too, in one area. Maybe you can get 2nd, 3rd or 4th optinions in one or two days.

Proton Therapy may even be an option, and about five top NYC hospitals utilize the Proton Center in NJ, while the one in NYC is built.

There are other type of radiation too like IORT, Brachytherapy, Cyber knife and others, which may be options. Chemo itself doesn’t kill this cancer by itself. If it does, it usually doesn’t last more than a year, I know.

I had Erbitux and Taxotere, one time, with Radiation, which didn’t work. I thought Erbitux wasn’t recommended for HPV related cancer by itself anymore, and is less effective, so I thought I read and heard. Usually it’s Cisplaton, unless there is a reason not to have it, but there are others to replace it like Carboplaton.

They combine chemos, have Immono therapy and Chemo, and I believe multiple types of immunotherapy treatments.

All hospitals are not the same sometimes. In my case, they will not refer you to another hospital, dr, that has a different treatment than theirs or recommend such. You have to do it yourself!

I didn’t plan on writing this much, but did. Good luck with everything!

Hello Christine,

Thanks a lot for the new info.

- I cannot have radiation therapy, because I had it 2 years to treat my original BOT cancer.

- My doctor first tried Immunotherapy on me using Opdivo, but it was not working on me. It was making some tumors bigger rather than smaller.

- I know chemo is Palliative treatment, but he has told me this is the only option left for me. He even told me statistically survival rate of people
who get just chemo is 9 months. He told me he'll do chemo and when we are done, he will look for clinical trials for me. He said many good
clinical trials require that you must have had chemo first.

That was his plan about chemo.

Thanks all for all the great feedback. It really makes a difference even Psychologically.

No-one has said anything about what is stopping my chemo right now. That is my low Neutrophil count of at most 1257 or 1.257 since 2012 (Before
any cancer) stopped chemo. A hematologist told me he is pretty sure the reason is that my Bone marrow does not produce enough blood cells (white & red). He said he can do bone marrow Exam (biopsy and aspiration), but when I asked if it is bone marrow how do we fix it? He said it is not something
that can be fixed.

Has anyone heard of this situation before? My Dr. has dropped the requirement for this to 1 or 1000 Neutrophils. I have had 1.05, 0.993, 0.991 and 0.98something. The times that I was below 1, I did not get chemo.

Appreciate any input about this, before I travel all over the country. As far as I know it only excludes chemo, not other type of treatments. But the doc has told me the only type of treatment that helps me is chemo.

Back in 2009 with my first OC diagnosis, my doctors told me I was being given my lifetime max of rads (72 greys) when I did my radiation treatments. Ive learned so many things about OC and treatments from this forum and its wonderful members. I was surprised to learn radiation treatments CAN be done more than once! This is on a case by case basis with many variables. Ive known quite a few who went thru rads twice and I even know a few who have had rads 3x successfully. This is why another doctor at another facility might be able to help. At least thats what I am hoping you discover!

Have a great day


PS..... The link for the list of CCCs is working again . Looks to me like they had website issues where I kept checking it for 3 hours and wasnt able to access their site.

Christine ,

When my SO learned my cancer has recurred the first thing he did is to check with my RO in 2016 and told me in my case it cannot be done.
Same with my MO. Not only he checked with my RO, but he also checked with the RO in tumor board meeting and they both said NAY. This is so basic that if 2 ROs at my facility say it cannot be done on me and they are both wrong, they should close it.