Yes, BOT can be persistent, and not always easily treatable. I have persistant cancer,,for unknown reasons, which can be many, including being chemo and radio resistant from hypoxia, other reasons too. MSKCC was doing PET scanning with hypoxia testing, I believe one member here had it in a clinical trial prior to treatment, which may have increased or lessened treatments based on findings. I don't know what it would do in our situation, but there are medications that may or may not help decrease hypoxia resistance, but from what I read, nothing worthwhile yet, without side effects. I had High Dose IORT, High Dose Intraoperative radiation treatment, during a neck dissection, and proton treatment with carboplatin next, about two months later, as part of the treatment package. Last year it was with IMRT, so I understand saving Protons as a future option, if needed. MSKCC does IORT also, being my doctor started it there in the 90's, and can be used in basically any location, usually with prior radiation. This is what they do1. doing a surgical dissection, 2. IORT 3. a flap during the same surgical procedure, and 4.more external beam radiation after that in 4-6 weeks depending on healing, but not always do it based on pathology, prior treatments.


Take care.

The last 6-8 weeks have been absolutely brutal.

Katie had 24 days of IMRT treatment (out of 35), after which Dr. Lee ordered the treatment to cease because the tumor was no longer responding (shrinking) to the treatment. She just had her last chemo treatment and now, we wait and let her heal.

At some point in the next few weeks, we'll have a consultation with the doctors about what treatment options remain, but it's safe to say that this isn't great news. There exists a "core" of the tumor that is simply not responding to the radiation/chemo.

Katie has been completely incapacitated by this 2nd round of IMRT and 3rd round of chemo. We had to forcibly ask MSKCC to put in a PEG because she wasn't getting enough nutrition by mouth. The treatment was causing massive amounts of stringy mucous build-up in her mouth making it very difficult to swallow. She's mostly non-verbal nowadays because it hurts her to talk. She's sleeping most of the time; it's all she can do to keep herself fed and hydrated with Ocelite.

We're not sure what treatment options remain to us. Certainly we'll ask about some of the immunotherapy-based clinical trials that are starting to accept oral cancer patients. I don't know if Proton Beam radiation therapy is an option. I'll probably ask about surgery again, but I expect the answer to still be that it's not an option to consider.

One thing that I've learned is that while MSKCC has some of the absolute best cancer doctors in the world, it is a place where communication goes to die. We appreciate their expert care, but it seems every week is another uphill battle to get all the different departments to talk to each other about the patient's care. If Katie's Mom and myself weren't pushing and being relentless advocates, I suspect her care would have been lesser for it. We'll likely keep Katie's treatment at MSKCC because of their doctor's expertise, but we're decidedly unhappy about their poor interdepartmental communication and scheduling.

Damien,

I am very sorry to hear about the recurrence and failing therapy. It sounds like your doctors are vigilant and not just going by the book and recognized the treatment is not helping and stopping.

Cancer is a brutal beast and the treatment are designed for the battle. Often said is the treatments are dialed up just to the point short of killing the patient in order to maximize the cancer kill.

I really hope the break allows her to regain some comfort and recover her strength.

Your comments about MSKCC are enlightening. My ENT did a fellowship there and is a remarkable physician. He is working here in Calif so not part of the goings-on that you describe. That said, many facilities are just as messed up, trust me.

Don

Sorry to hear Damien. Not sure of the options either being IMRT radiation was just given, but a blogger here said he was doing something like 20 IMRT, and then 15 Protons, so it may be possible. I'm currently doing 25 Proton treatments at Procure in Somerset, NJ, and just finished my 15th treatment today, and hardly have redness. As mentioned previously, MSKCC, and five other top NYC hospitals, Beth Israel (Continium Health Care), Mt Sinai, NYU, NY Presbeterian, Montifiore are part of Procure center since October, and send patients there where each hospital has a RO there every Monday for patients like myself, but I'm at Beth Israel, so would be a different doctor than from MSKCC, but other doctors from Procure may see you in their absence, and did. I know you like MSKCC, they are not the only top ones in NYC, and I highly recommend seeing Dr. Harrison, at least for a consultation at Beth Israel. He worked at MSKCC for over ten years, and is world renowned. He is also a head and neck expert, an otoloaryncologist, and did my surgery for IORT, twice, with my ENT who did the dissections, IMRT, removed my carotid artery, and now sent me to Protons. There is no quit in this guy. MSKCC wouldn't even meet with me last year, but he did, and treated me.

Good luck with everything, and I hope for the best and best options.

Hi Damien,

I'm so sorry that things are not working out as they should for Katie. If you are interested in learning more about immunotherapy, my husband will (hopefully) start the clinical trial in about 10 days' time. Here is the link to the drug sponsor and further information on the study

http://www.astrazenecaclinicaltrials.com/Submission/View?id=2190

HI Damien, I am so sorry to hear that the tumor is so stubborn. I hope the break in radiation will allow Katie to heal a little and for your medical team to re-group as well. Please know Katie and you are in my thoughts and prayers.

Best,
Mary

I am sorry to hear your news.
Has Katie got anything to lose by pursuing Surgery?
Tammy

It can be crazy frustrating when the hospital doesn't work together interdepartmentally. My father in law had a similar situation though they are very good at his hospital. The chemo dep would give him a schedule, then rads would give him a schedule, then surgery would give him a schedule. He has one number at the hospital. They should have all accessed ONE schedule and put their stuff in so he would have ONE paper to look at instead of three - and most importantly they other departments could see if they were running over someone's time.

Anyway - push and advocate - that is the only way to get things done. I am surprised they stopped the rads. How do they know it's not responding ? has she had a CT? Usually they will follow through to the end to determine response. Can they go in and debulk the tumor? Then finish the radiation - or do internal radiation? (this is done while she is open - they go in - remove what they can then cook what is left)

give her a hug for me and sending you luck and blessings that she begins to respond.

She was having a CT about once a week. The last one showed no change in tumor size. They elected to stop the rads as it was really causing Katie's health to deteriorate. Physically, she's an absolute train wreck. She needs lots of bed rest and time to heal.

I've read about doing rads while the tumor is exposed. This might be an option, but I'm not very hopeful that it will be. My understanding is that the location of the tumor at the base of her tongue makes surgery on it very very difficult. Removal is probably impossible without catastrophic quality-of-life side effects. I'm sure that we'll discuss this option (debulking and radiation during neck dissection) when we next meet with the doctors.

The only good news we've had recently is that her liver functions are fine and her new nutrition doctor thinks she can start to slowly get back to trying solid food. We're waiting for some of the mucous to clear from her mouth first.

It's called IORT, intraoperative radiation therapy, and they do it on BOT, but usually the tumor is dissected first, then possibly a flap for prtoection, more radiation, IORT during surgery, and then more EBRT, possibly with chemo at a later date or similar variations, depending on prior treatments. There is also Brachtherapy. Just offering suggestions in case MSKCC does not come up with an optimal plan, which probably won't be the case, and they do these treatmnts there too, if applicable.

Good luck with everything.