Unfortunately, I don't have much good news to share with all of you. Katie's tumor continues to grow, despite the chemo she's been on for the last 4-6 weeks (Erbitux, Cisplatin, Taxitere). Scans show that it's progressed into other parts of her tongue and is pushing against her larynx quite a bit. You can actually feel the tumor when you put your finger on her throat.

There's also quite a bit of fluid collection in the lower neck area and that's also growing larger and may eventually burst.

Surgery continues to not be an option for Katie. Surgery would involve a total glossectomy, loss of the larynx, and a good portion of her jaw. With only a 5% chance of getting all the cancer, it's not worth it. The rest of her life would be irrevocably changed -- loss of voice, loss of swallowing; facial disfigurement; endless pain. Quality of life is an important factor in this decision. We are in agreement with the surgeon that it's just not an option for us.

I'm growing alarmed that we appear to be running out of options. The chemo and radiation aren't working. Her first rounds of chemo and radiation in the Spring appears to work very well, and then the cancer came roaring back over the summer months, and now we're dealing with this aggressive recurrence. More radiation was thought to be mostly not possible by us, but our RO at MSKCC in NYC is recommending something called "Quad-Shot" radiation--four intense bursts of radiation over two days, as a palliative measure to try to arrest the growth of the tumor.

All the literature I've read on this indicates it's mostly used on patients who are at the *end* of their cancer care and that scares me more than anything. This is the first time I've actually been able to admit to myself that this cancer is more serious than I was allowing myself to believe. I don't like to be pessimistic or negative, but things have not been going well for us. Trying to stay cheery every day is becoming harder and harder with every downturn.

Have any of you here gone through Quad-Shot radiation therapy? Has it helped? What do you know about it?

Cyberknife therapy has not yet been recommended to us, but I'll be asking the doctor about it the next time we meet.

I know that most of you are not doctors, but I want to ask anyway. Are there any other therapies that you know about that I can ask our doctors about? I have well-meaning friends suggesting holistic and alternative treatments and normally I wouldn't even consider these kinds of things, but I'm worried, and that worry is making me susceptible to such things.

Nobody's been willing to talk to me about a prognosis and I've been reluctant to ask. But maybe now's the time. Do you feel that it's better to hear a prognosis from a medical professional, or continue "not knowing"?

Dear Damien,

I am very sorry to hear about the way your journey has gone so long and so poorly. Based on what you shared, it does seem Katie has been unable to stop the cancer. She is also being treated at a world class institute that I'm sure is on top of the latest and best treatments.

Maybe it is now time to have a serious review and consultation with your team to go over the history of treatments and what options you have going forward.

You can also seek alternate and secondary opinions. If, in fact, only palliative treatments are offered then you can focus your energy to make things as comforting as possible for all concerned. Best to you, Don

Damien, Im very sorry to read the update about Katie! I was hoping that no posts meant things were getting better. Im so sorry to hear thats not the case.

Try your best to think clearly and not fall into believing false claims. The only scientifically proven ways to eliminate oral cancer are radiation with our without chemo and surgery. Chemo alone may shrink the tumors making surgery a later option.

You are already doing the best thing by seeking out the countrys top cancer centers and doctors. I can suggest maybe trying to go to another CCC for a second or even 3rd opinion. Dont give up. I also didnt have very a good chance of survival with my third round of OC and I almost quit and didnt seek treatment. But because of Brian and the members of OCF, they encouraged me to try. They kept telling me I couldnt quit unless I gave it a shot. I was left disfigured and have life long eating issues but Im alive and live a very good life. Being disfigured isnt optimal and has its challenges but its not the worst thing in the world. I know its a huge surgery Katie would go thru and it may not work (mine was similar and I had complications) but its worth a shot if it will save her. I have a very different view point on this than others as Ive lived it and without the surgery I wouldnt be here now. At least get another opinion and then make your decisions. We will support you both no matter what path this takes you. Best wishes!!!




PS....It was great to meet you both at Susans walk in September. If there is anything I can do, dont hesitate to ask and I will help you as much as I can. Please give Katie a hug from me and hang in there.

Damien,
As the other half of someone who has been through the surgery you and Katie don't want, I have to reach out to you.
Kris had his total Glossectomy and Laryngectomy 20 months ago. We too were horrified at the prospect of this huge and life changing surgery. But it came down to this. Have the surgery and live. Or, don't do the surgery and die.
It was a very easy decision then for us to make. I wanted Kris to live and with lots of encouragement and love, Kris realised that he too wanted to live. So much to live for and 3 lovely children to be here for.
Well, 20 months later and life is good. Don't get me wrong, it is quite different and we have had a lot to adjust to. But, it has so been worth it. Kris is doing very well and his health is good. He looks after our 3 acre property doing all the physical work needed. Actually I don't remember him ever being as muscled as he is now. He swallows all his nutrition, although it is liquid. We go out for coffees. In short he participates fully in our lives. We also had a holiday in Australia in August.
He speaks with a TEP valve, though I admit it can be quite hard to understand. But I get about 90% of what he says and so do our kids and his good mates. Strangers don't get it, it's a bit like trying to understand a very heavy accent, you have to get your ear in.
Please don't turn this surgery down because of what you think life will be like after.
I am just thrilled Kris is here with me and our family. The alternative was never an option.
Thinking of you and Katie,
Tammy

I'm sorry to hear all this, and others have offered good advise. I'll just list a few of the other top head and neck cancer hospitals in NYC, which you may already know, in case you want a 2nd opinion, but you are at a fine hospital at MSKCC, but each of the others may offer something different.

Beth Israel
NYU
Mt. Sinai
New York Presbyterian
Lenox Hill Hospital

I went to Mt. Sinai, but now at Beth Israel, which I prefer. If you have any questions, let me know. Two of the best are Dr. Mark Urken, Otolaryngologist, and Dr Louis B. Harrison, Radiation Oncologist, both at Beth Israel, and world renowned.

Good luck.

The therapy you describe sounds good (the quad radiation) I know it is a large invasive surgery. Tam hit it right. Her husband is living the life you were concerned about and seems to be doing insanely well. I don't believe in numbers - the 5% - all that much. They are a guideline but everyone writes their own story. Perhaps maybe you can ask the dr. about a combination of therapies. Maybe do a surgery to debulk and remove as much of the cancer as possible with the quad radiation after? I know Paul had intraoperative radiation too... that might be an option.

also her initial radiation was to her tongue with a painting of her nodes maybe because of this new location they can give her more rads to that area as well?

hugs. and very sorry for all you are going through.

Quick update: Dr. Lee has changed Katie's radiation plan. Instead of Quad-Shot, she's recommending another whole round (35 days) of IMRT. We had thought that this much more radiation would not be possible, but Dr. Lee thinks the physicists can design a plan to avoid much of the overtly dangerous consequences (like avoiding the eyes, optic nerves, brainstem, etc.)

We're both pleased and alarmed by this change. Pleased because it's considered a more powerful radiation treatment with a small chance of being curative, but alarmed because the tumor's aggressive growth has warranted this treatment.

At this point, any "long-term" side effects like necrosis of the jaw, or loss of teeth...things that you'd see 10-15 years down the road are moot. It's hard to accept, but it's the truth: if we get 10-15 years of life as a trade-off, we'll consider it a victory.

Damien,
Again I have to reiterate.
Please do not rule out curative surgery. It really is a matter of life or death. Radiation has not worked to date for Katie, why chance it again? By the way that is what our docs said to us.
Kris is having a very good life now post total Glossectomy and laryngectomy. As of yesterday still NED.
Tammy

Damien, Has Dr Lee, who I know of through the years, recommended Proton Treatment, which is very precise, and damages less area than IMRT? MSKCC is in partnership with 5 other hospitals in NYC called. NY Proton Treatment Center, with Continuum healthcare (Beth Israel), MSKCC, NYU, New York Presbyterian, and Mt Sinai to have Proton Treatment in Somerset, NJ where they have doctor's from your hospital there, mine does, and went there yesterday for a consultation . They plan on building a Proton Center on West 57th street eventually.

This will be my 5th radiation treatment package, but everyone is different, so are doctors. Another top ENT, other than who I mentioned is Dr. Eric Gendon, at Mt Sinai Hospital, who worked under Dr. Urken before he left to go to Beth Isrsel.

You do what you want, and who your are comfortable with. Just offering suggestions, in case you're considering, and have searched out my own. Wish I can do more.

Tammy, the surgery of which you speak only gives Katie a 5% chance of being curative. For us, at this time, it's not an option we want to consider, even if we could find a willing surgeon. This may change in the future.

Paul, Proton therapy was going to be our next step if the chemo shrunk the tumor. The chemo had little effect and the tumor has grown larger, leading us to treatment (IMRT) that we hope will shrink or eradicate the tumor. Proton therapy may be an option for us at some point. The first round of IMRT in Jan-March 2013 did appear to work on the first tumor on the side of her tongue. We were hopeful that the IMRT would prevent recurrence a also, but it didn't. This BOT tumor appears to be much more aggressive. Let's hope it works this time as well.

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.

Damien, please read my signature. Those " catastrophic " quality of life side effects are in time, not so bad after all. Far better than the alternative of no life at all.
Wishing you guidance through this mire,
Tammy

RIP Katie Travis Barrett
02-14-2014.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=177647#Post177647