My Mom did get discharged from the hospital today after having a really rough time with her treatment. She did complete 2 weeks (out of 4) of the chemo and 37 out of 40 IMRTs. She was mentally and physically defeated from this very agressive approach that the drs used. She is finally able to tolerate some form of nutrition for the first time in weeks so they did release her. The dr will have her come back weekly as she is recovering and they said a scan will take place in approx 2 months. She has no interest in any further medical treatment (understandably so) but my concern is that we did not finish the entire regime. I know you guys are not doctors but have seen and lived enough around this wretched disease that I look to you for advice:

Should I put pressure on my Mom to go onto MD Anderson for an evaluation? I doubt that she will ever consider taking any more chemo but perhaps a selective neck disection should be considered. What are your thoughts on this? How long should we wait to make this decision and get her there. She is so happy to get home that I know she will not like this idea right now but I am absolutely horrified of a reoccurence. Her doctors are giving her the impression that they feel her treatment was enough. If that was the case why did they originally schedule her for more? I would appreciate your valuable insight! Also does anyone have links to cases/stories covering surgery post imrt/chemo? THANKS!!!
Tami

PS just to reiterate her diagnosis: based on a ct scan and biopsy she was initially dx as stage 1 bot scc. Before they began tx they did a Pet scan and found 1 node involved and a 2nd small tumor on the right side of the tongue. Therefore her stage moved to 3.

Tami--

Your mom has already had more treatment than most of the folks receiving chemoradiation -- where 33 treatments of total 66 Gy seems to be the norm (it is at Hopkins). And this is for Stages III and IV. Most receive 3 cycles of chemo if they are getting cisplatin, not 4. Was she ever a smoker? If not, has her tumor been tested for human papilloma virus? This typically presents in tonsil and base of tongue (may met to nodes) and has a much better prognosis and response to treatment.

Most of the docs here at Hopkins do not feel my husband will need further treatment (read surgery) after he completes his chemoradiation on Sept. 26. In any case they would do follow-up scans at one month before even considering anything more. (He is HPV-16 positive).

Gail

Thanks for the quick response Gail-
I am unsure if she was ever tested for the HPV. What phase of this process would they have tested her for it? The ent or oncologist? I asked her about it and she said it was never mentioned to her. But yes she was a smoker up to the day she found out she had cancer (40 yrs). Brian had thought maybe that is why they went so crazily agressive on her. I am also concerned about cancer lingering in the nodes but showing a good scan initially. I just don't think she can handle a reoccurence. I feel like this nightmare is never going to end.
Tami

Hi --

Usually they (that is, Hopkins) test for HPV in people with HNC who have never smoked -- as to when, as long as the tumor sample is available, it can be tested but I am not sure that they would test if the person were a smoker.

Gail

Hi Tami! Well, this is very difficult-I would not pressure her to do anything. More, give her lots of information and support her when she makes the decisions, you know? It is ultimately up to her. Having said that, I feel so sad for you and I so relate to how you feel. Ultimately, do you believe that we really have control over any of this crap-ola? Ugggh. I am so happy she's home and comfy. Have they talked about surgery? From what I've read, the dudes and gals here say the surgery is a breeze compared to the radiation/chemo. It sounds as though your mother would feel like sliding down a banister of razor blades would be a breeze compared to what she went through. How hard for you to be so far from her!

Gail,
It might depend on how long the patient had smoked whether they tested for HPV.

Gail.... Please remember that Hopkins is a unique facility when it comes to HPV. It is a hot bed of research on HPV compared to most institutions, and as such they are sampling people for the virus. At most other institutions this is not routinely done. Additionally at other NCCI's there is no difference in treatment protocols for patients that show a presence of HPV than those that do not. Only because of the research at Hopkins are they collecting samples. As I said in a previous posting, Dr. Gillison at Hopkins who is on the OCF board is a prominent and highly published HPV authority. That program is unique to Hopkins that she heads.

I am not sure if the treatment plan is correlated with whether a patient is a smoker or not because in my case, I have never smoked or drunk in my life, but I was given intensive, concurrent chemoradiation to treat my stage 4 tonsil cancer (T2N3M0)with 4 rounds of cisplatin and 48 treatments of radiation (not IMRT). My oncologist didn't tell me if it was the most aggressive treatment but he just said that it was something I could tolerate. No surgery was necessary after treatment and I am doing fine today.

Karen

Tami, the question I have to ask is how did she respond to treatment? What did the midpoint scans reveal? Was there a "complete response"?

Hi Brian --

Actually have heard of other centers now testing for HPV (this from folks at Hopkins doing HPV research) -- also as you know it is becoming more routine for women (as a screen, not just for high-risk) and hopefully this will translate over to the oral cancer side.
My GYN plans to test me when I see her next week.

As to whether treatment is tailored -- did meet one fellow yesterday who was long-time smoker with stage IV SCC - a bulky mouth tumor and mets on both sides of neck and they are hitting him fairly hard -- using new Erbitux-like drug as induction chemo, daily low-dose cisplatin and IMRT (which is part of the new drug trial protocol.) He said they were going to treat him as aggressively as they could considering his co-existing heart problems, in part because his disease was so advanced and in part because he was a smoker.

The current thinking is that *at some future time* treatment for HPV-positive HNC will differ as the tumors are biologically different (different proteins are over- or under-expressed from usual HNC tumor) and that newer drugs will be targeted to these differences. However this is a long time away, they are still not sure how the virus actually induces the cancer.

Gail