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 :-).