Tomorrow's the big day when I meet with my multidisciplinary team to discuss my treatment options at Johns Hopkins. I've read your posts here and realize there are no black and white answers, only many shades of grey.

The simple part: dx HPV 16+ scc left bot < 1 cm with highly suspicious areas in level II lymph nodes on both sides, ranging in size from very small to about 1.5 cm max.

The less simple part: I had a myeloablative bone marrow transplant 22 months ago, fully matched unrelated donor. I had a total of 21 5-day cycles of Vidaza, a demethylating chemo drug (I call it chemo light because effects aren't too bad). But the myeloablation required the big guns - fludarabine and busulfan. Then I had high dose cytoxan afterwards to help prevent graft versus host disease (gvhd). I have some permanent after effects - dry mouth and eyes, I don't sweat, sparse hair on my head. It took more than year for my taste buds to be nearly right again. It sounds awful but aside from the eating issues I've done great and feel wonderful. My scans and bloodwork indicate all major organs are fine. I was very healthy until the blood cancer. I have a little gvhd in my eyes, mouth, and skin. A little is good to help keep the cancer away but a lot can kill you. I have just the right amount but worry what the new treatments might do. More info than anyone wanted or needed...on to the questions.

The surgeons will of course want to do surgery. I like the idea of robotic surgery on my tongue because it is such a small lesion and it would hopefully reduce the amount of radiation I need. I know, however, there are down sides to surgery. How the heck do you decide? What about the lymph nodes? Radiate or remove? How much, how many? Why? I may not be a candidate for chemo having had so much already. How will that impact my prognosis?

What are some good questions to ask to help me decide what's best for me? I'm seeing a radiologist, a surgical oncologist, a medical oncologist, and a speech pathologist tomorrow. I think they will say "This is what you need to do." I want to be ready with the right questions so I don't feel pressured into an immediate decision blindly accepting.

Sorry to ramble. I'm feeling more anxious than my usual, possibly because my husband is not coping well and I so hate putting him through all of this again so soon.

All ideas are welcome - please include the whys with the whats.

Thanks much.

Hi, Karen

What a balancing act! I think that, given your history, they will want to minimize radiation and chemo. In some ways, surgery is the easiest to recover from. Refering to the NCCN Guidelines, surgery to the primary and bilateral neck dissection could be be the treatment - followup with RT or Chemo RT if adverse features are found (or if the doctor is not comfortable with just surgery due to the number of suspicious nodes).

I think I would ask about what impacts your previous treatment could have on your proposed TX.

I would bring in a notebook, and a printed copy of the NCCN Guidelines (appropriate pages).

Best wishes to you and your husband!
Maria

Maria,

Thank you so much. Your posts, both current and past, have already helped a great deal.

How did your husband end up with Erbitux instead of chemo? This is an appealing option to me if I'm able to tolerate it. I just read an interesting article about a study that showed people from the southeast were more likely to have a severe allergic reaction due to prior exposre to a similar compound. I'm originally from Virginia, one of the high incidence states. Coincidentally, the doctor who did the study is one I'm seeing tomorrow. She apparently moved from Vanderbilt to Johns Hopkins.

Any other Erbitux users - pros and cons you've experienced?

Thank you again.

I had it on my last go around. Had a minor case of acne which they said was a good sign. Enough reaction to show I was being effected, but not a bad reaction. Other than that I toleraated it well.

Good luck... I'm of the- get as much as you can out surgically- ilk. And then follow up with rads and chemo. That way there's less actually there for the chemo and rads to work on, and if you have stop part way through it wouldn't the so traumatic. Hugs and best of luck!

Hi, Karen
I think my husband was offered the Erbitux because the doctors didn't want to use a neurotoxic drug (which cisplatin is) on a scientist. He also fit the profile the Bonner data indicate that imply an Ertibux advantage, and understands the risk/benefit aspect of the situation. The Bonner data also indicate a correlation between low-moderate EFGR expression and Erbitux efficacy. If Erbitux is a possiblity, ask the doctors if getting EFGR staining on your biopsy samples is possible, or if there are any other biomarkers that would show correlation between Erbitux and a positive result.
The acniform rash that Kelly mentions is positively associated with survival in the Bonner data, especially prominent rash on the first cycle - which happens before the radiation starts. If you go with the Erbitux - and don't get the acniform rash, you could ask about a re-evaluation of the therapy. In the absence of a confirmed biomarker (and several groups are attempting to figure this out) the acniform rash is the best confirmation that I am aware of that it is working. When my husband got his first cycle rash, I kept calling it lovely. Aquaphor helped!
There are several other biological therapies in clinical trial - there is a list on the NCI site - maybe print one or two.
Definately mention the Virginia connection.

Wow, what an experience today, and I mean that in a positive way. We arrived a little early and didn't have time to settle into a chair in the waiting room before the nurse took me in to check my vitals. She handed me paperwork to complete but before I could finish line one, the first doctor was in to see me. She said not to worry about the paperwork - she'd rather ask the questions in person anyway. She talked a lot about HPV+ and why that's good. I asked about the lymph node involvement on both sides with such a small bot tumor. She said they actually see that pretty often because the tongue is so vascular. She escorted me to another room where a resident numbed my nose in preparation for the camera. After a short wait, the room was literally filled with doctors and a couple of students - I believe there were 10 in all in an average size examination room. They all introduced themselves and most said they'd also attended the tumor board meeting yesterday where my case was presented by the two doctors I'd consulted with previously. All eyes were on the image of my throat and tongue on the screen. I had another thorough examination of my mouth and ears, too, and did some swallowing tests with dyed applesauce.

The radiation oncologist was the lead today - I expected him to talk to me about radiation treatments and effects but instead he and the others all concurred excitedly that I was an ideal candidate for TORS. Down to the last one, they were all extremely optimistic about my prognosis because the cancer has apparently been detected very early compared to usual bot and it is HPV+. They praised my local ENT highly for following up something for which many others would have taken a "wait and see" approach. I joked with the radiology oncologist that I was shocked he didn't want to do radiation and with the medical oncologist that she didn't want to do chemo and told them I expected everyone to advocate their own specialty. The surgeon spoke up with a grin and said, "Well, I still want to operate!"

Maria, you guessed correctly that they want to minimize or avoid radiation and chemo due to my past history. They're going to determine that after my surgery which will be scheduled asap. Realistically, that may be as long as 4 weeks from now to find me a slot where both my surgeon and the robot are available, the downside to going to a busy high tech hospital. I was forewarned that I'll be miserable post surgery but should heal well. A few weeks after the TORS, they'll do a neck dissection, the extent of which is still tbd.

At the end of the session, even my stressed and pessimistic by nature husband was feeling better about my future. He assured me that yes, the doctors really were genuinely excited and optimistic - it was NOT just me grasping at straws and seeing something hopeful that wasn't there.

I'm worried about the treatment not being aggressive enough but I at least feel comfortable with my team and their competence and combined years of experience in a great cross-section of disciplines. I'm lucky to live so close to a top ccc. I don't think I could be in better hands. I'm also an "interesting case" because of my transplant and gvhd so am getting more attention from more people than usual. I would rather be ordinary medically but the extra interest and attention is a good thing, I think.

Again, it is such a comfort to be a part of your community and your combined wisdom and experiences. Thanks to you, I knew a lot of questions to ask that I wouldn't have thought of otherwise and the doctors reacted well to my intelligent questions. The road ahead is still scary and uncertain but I'm feeling better about the journey overall.

That's very good news, Karen. They are going to be keeping a very close eye on you - that is a benefit of your 'unusual case' status. I am sure they will be more aggressive if they need to be - but that will likely wait for the results of the neck dissection. One of my riding buddies, a resident in pediatric oncolgy, mentioned sometimes being more aggressive merely adds toxicity - the goal being to do in the cancer without doing in the patient.

The four week wait for the TORS is unnerving, but if you were going for radiation, there would also be a wait as the IMRT planning and scheduling would have to take place. At least you don't have the winter holidays between your diagnosis and treatment - I am sure that caused at least three weeks of delay for my husband. I would push for the neck dissection to follow the TORS procedure as quickly as possible as is safe for you.

Please give your stressed out husband a hug for me, as this will be rough on him as well. I found that meditation helped me stay (kind of) sane.

Best wishes from Ohio,
Maria

That's so good. happy for you... Recovery should be quick.

I'm very frustrated with how slowly things seem to move through the bureaucracy of Johns Hopkins. Is this typical of the large cancer centers?

I now have to meet with my surgeon (the same doctor with whom I originally consulted) before I can even be put on the schedule. I asked why I couldn't be placed on the schedule and then talk to her in the interim and was told that we have to meet face to face to discuss my treatment plan before the surgery consult form can be completed. The earliest appointment to see her is Friday. What I see is ANOTHER week gone by with this time bomb ticking away.

Is this the price of going to a top center? I'm feeling very helpless, caught between the proverbial rock and hard place. Should I have gone with a slightly less renowned but undoubtedly competent center like University of Maryland or Greater Baltimore Medical Center? Now I've already invested over a month with the local ENT and nearly another month with Hopkins and no scheduled treatment yet. If I changed at this point, I'd lose even more time.

I'm not looking to you for answers today. I just really needed to vent because I'm frightened and angry. On the other hand, if you have suggestions, they are always welcomed :-).

Yes, the waiting sucks. Make the appointment for Friday. Tomorrow morning, call the office and oh so politely ask if there have been any cancelations, and if you can have your appoinment bumped up. The person who does the scheduling is your new BFF. Repeat Wednesday. Good luck!
Maria

Karen;
My impression is that while chemo and radiation can be very effective, if there is a chance to surgically resect a visible, descrete tumor or tumors that is what everyone should be working towards. Perhaps along with chemo RT or whatever your team decides. I also spoke with my oncologist one day and he said that currently, oncology residencies are teaching that if they are confronted with a curable cancer, then you hit it with everything that is available up to whatever the patient can tolerate. The line of thinking where they might say "well, its a small tumor and we think that it was fully resected in the O.R. so we can just give her a light dose of chemo or no chemo at all and watch to see what happens" no longer represents current thinking. Now its surgery if possible and all the chemo you can stand to make sure that every last cancer cell is dead, dead, dead.

Push call them daily see if she has any cancelations, ask to be out on a waiting list. Hugs waiting sucks,

Several months ago, I wanted a 3rd opinion at Memorial Sloan Kettering in NYC, number two Cancet hospital in the country, and a CCC, with the Radiation Oncologist, due to surgical pathology showing postive margins, and need for reiiridation. I had to send every single document, dating back three years for every test, CD copy of 11 scans, pathology slides, radiation plan, color copies of RT plan, etc, which was over 400 pages, to them before an appointment was even made! They kept delaying after they received 98 percent, saying a slide or two was not sent by a treatment hospital, etc., so finally after 4 weeks of calling, and knowing they had everything, I calledvagain, and was told thetecwas no reason for me to have a consultation, and to seek treatent elsewhere.. I was dumbfounded. I could have been told that from the start instead of wasting my time, and thought it was unprofessional. I was asked if I wanted my documents backs, and of course did. To this date I have not received it. luckily, during my wait, I went elsewhere for a consultation, and was happy with the Dr, and treatment plan.

Paul,

Did they even give you the reason for not agreeing to see you?

Hi David,

Not really. I assume since my case was a liitle more complicated, and I had prior treatments at another hospital, few would want to treat me, and it was probably known I was shopping around. I had an offer of treatment at my original treating hospital, Mt Sinai, which i told thrm sbout, but did not mention it to them about another offer at another nyc hospital after a 2nd opinion for another treatmrnt option.. I was told to continue treatment at either hospital, mentioning by name the one I never told them about lol, and there was no need for a consultation since were good hospitals.

Paul;
Thank God that you are proactive in your own care. I wish that everyone would approach their healthcare as a consumer instead of as a patient. Eventually it becomes a full time job. For them to put you off for so long and then to deny you a consult for no stated reason is, to me, unconscionable. Sending healing thoughts your way.

Thank you Richard.

Paul, stringing you along and then not seeing you? I can imagine how horribly frustrated and angry you must be! I'm sorry to hear this about Sloan-Kettering.

I had the meeting with my surgeon Friday and have been a visibly emotional wreck off and on since. I tried several times to post here and couldn't find words. This is not me! I'm the one who stays strong and reassures all those around me that I'll be fine. The bigger the crisis, the calmer and more rational I grow (at least outwardly). It's how I cope.

The surgeon (who I'll refer to as "doc") kept me waiting for two hours past my appointment time. When doc finally arrived and apologized for running late, I smiled and said, "It's okay. I had nowhere else to be today, and I assume you are late because you spend as much time with each patient as is needed." I was determined to remain calm and to get through the list of a dozen questions I'd prepared. It seems like a bad idea to tee off someone who's going to do surgery on you!

Disappointingly, doc acted dismissive and annoyed that I raised questions about a possible connection with my current cancer and a prior tumor on my parotid. Doc also made me feel rushed and interrupted me midsentence at times, anticipating [incorrectly] what I was trying to ask. They were again dismissive when I expressed my concerns about my infant immune system and finally ended up hurrying me out the door saying if I didn't go, I wouldn't have time to talk to the scheduler before they left. As it turned out, the scheduler was still there but someone with whom they needed to coordinate had already gone so I left feeling more frustated than ever in addition to being angry (and ravenously hungry from missing lunch). I was with the surgeon about 10 minutes at most.

I felt trapped and uncharacteristically powerless because I didn't want to lose any more precious time in getting treatment started. I DO have high confidence in this surgeon's surgical and medical expertise. But it was extremely disappointing to have such poor rapport. The surgeon didn't get my sense of humor and couldn't recognize sincere compliments - I was trying so hard to focus on the positive and overlook the bedside manner. I'm not generally lacking in people skills.

Afterwards, I was wracked with self-doubt about making the right decision. Should I seek a different surgeon, or even a different hospital at the expense of more time? I don't think so. If I questioned the surgeon's competence, certainly, but I don't. Lots of people don't get my dry and often warped sense of humor so I probably shouldn't hold that part against doc. I am, however, accustomed to being treated with more respect. Everyone has bad days, and I think doc was having one, but that does not excuse rudeness and lack of sympathy for my concerns. Then there's the nagging doubt that I misjudged their competence.

I think the stress of the past 3 years is finally catching up with me.

So the end of this chapter is that I have decided to stay with this surgeon and this hospital, and I finally got my schedule late this morning - TORS partial glossectomy on Oct 11 (my 28th wedding anniversary) and bilateral modified radical neck dissection on Oct 24 (two days before my 59th birthday). I'll never feel certain if this is the right choice but I feel better for having made one. Time to get back into battle mode!

Karen, Im sorry your appointment was not the best. Ive seen several members who have not been happy with their doctors bedside manner but the doctor is an excellent choice for their situation. I hope this is whats happening in your circumstance. A doctor doesnt have to be nice to be top notch, but being nice sure helps a patient feel at ease.

Your choice has been made now please try your very best not to second guess yourself. "What if" are two huge words that can make you nuts. Try to keep yourself busy so the time flies before you get treated. I wish you all the best with everything. Please check back with us as soon after your surgeries as you can. We all worry when one of our own goes into battle. We will be right there along with you.

Best wishes!

Thank you, Christine! You're absolutely right. I'm all for moving forward without any "what ifs" and time always flies. I'm a pragmatist at the core.

A quick update - my revised signature pretty much says it all. My surgeries went well, and I'm recovering nicely. My surgeon turned out to be great personally as well professionally. I think we were both having bad days at our prior meeting. The bot tumor was removed with clear margins and all 92 nodes removed in my neck dissection were clear of cancer. There was swelling and inflammation present of unknown origin which is what caused the PET scan to "light up". They tested for fungal and other organisms with negative results and believe it may be related to my graft-versus-host disease. I'll follow up with my transplant doc for that. My case was reviewed again this morning by the tumor board, and they were all in agreement that I don't need chemo or radiation. This was what we were hoping for, walking the fine line between curing the tongue cancer and relapsing the blood cancer. I have my 2-year bone marrow biopsy 12/6/12 and am hoping for more good news on that front! I'll have a follow-up MRI in 2-1/2 months for my base of tongue.

Thanks to everyone who provided input and support!

Karen

Now you can concentrate on total recovery! Congrats on the no rad/chemo recommendation.

Woot!!! Heal well!