Hi there I agree with David there was a recent study saying that Erbitux is actually not that effective on HPV+ cancers - it should be carbo or cisplatin, and there are a few others.

And stage 2 HPV scc is very treatable and curable with radiation and chemo. She should also have a feeding tube.

That said radiation is 6-8 weeks of horror to most. but chemo alone will not cure her so it's like making her go through all this really for nothing perhaps the best you can hope for is a standstill?. If she's going to be treated you want at least the hope of a positive outcome... Hence the rads. Yours Is a position I don't envy at all god bless... She seems a fighter. Do ask her what she wants. Hugs...

Hi Jane,
With the Erbitux comes a pretty bad rash. You can use Aquafor Ointment for it if it gets really bad. Just keep it moisturized, but not with perfumy stuff. It might burn.
As much as I hate to tell you this, the guys are right. The Erbitux is not the chemo of choice for her situation. I can see why they would not want to give her Cistplatin as it is very harsh, but there are many others to choose from. Just sayin'!
How did today go? How is she feeling this evening?
Thinking of you all.
Kathy

I noticed on your other post you mentioned doing 4 feedings per day. Ask your mothers doc for a feeding pump. This can be set to run overnight while she sleeps. It will be how she is able to get enough in. If her formula is 560 calories she needs 5 cans a day plus 48 oz or water to get thru this. I cant stress enough how important this is, you cant skimp even one day. With a pump it will allow you to load it with 2 cans of formula and 2 cans of water and let it run all night. This way during the day you wont have to work so hard at forcing her to 'eat'. Just make sure she sleeps propped up on a few pillows and you need to flush the tube after her feedings.



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Hi Schue

So sorry to hear about your mother but I would concur with Christine regarding an overnight pump. My Alex dropped to 48kgs (105 lbs) which at 6'1" put him in hospital. Using an overnight pump saved his life. He was able to take on 2000 calories this way. From memory the nurses started the pump at about 8pm and finished around 6am. It is possible to run the pump a bit faster than this (as Alex figured out the second we got him home) but you would need to be careful and only do it with advice from the dietician or nurse. I think Alex used the pump for about 6 months.

With regard to the choice of Erbitux for your Mum, I disagree with everyone here and would suggest that it is a very good choice for someone who has a recurrence, who is your mother's age and who appears to be concerned about side effects and quality of life (I assume this is why she has rejected radiation?).

The only information I can find that suggests Erbitux is less effective in HPV+ve cancer is a particularly poor study published by the Sloan-Kettering group.

Int J Radiat Oncol Biol Phys. 2011 Nov 15;81(4):915-22.

Even the authors state that their findings "must be interpreted cautiously because of the retrospective nature of the study and significant differences in patient selection".

Unfortunately, this study seem to have taken on a life of its own with people quoting the results giving it credibility that it just does not deserve. Even our own Oral Cancer News section makes reference to it through a case study presentation where one of the panel of doctors used the study to state Erbitux was not effective in HPV+ve cancers. In addition, the study is only relevant for patients who are newly diagnosed with oral cancer.

There are dozens of studies that show Erbitux as a good agent for recurrent head and neck cancer - HPV+ve or not.

Now that I have had my little rant, I am sure someone will point me in the direction of a robust trial that says the opposite

The most important thing is that you have trust in your doctors, that your mothers wishes are heard and you and your sisters support your mother and each other through what will be a very difficult time.

Karen

I'm confused. My brother's SCC was HPV+ and I remember discussing EGFR with him, and for which he had been tested. It wasn't something I took in much about, but whatever his EGFR reading or expression was, because of it he was given the go-ahead for Erbitux.

there is a school of thought that suggests that Erbitux would be a good choice for an HPV +ve tumour because it DOESN'T over-express EGFR. Over-expression of EGFR is associated with poor outcome on its own.

I have posted on this in the medications and treatments section on the post "Erbitux and HPV don't play well together" as the points to be made were more academic than supportive of individuals with needs relating to their own situation.

Karen

Jane

How hard this must be for you. I'm not going to hijack your thread with my concerns about Erbitux. Instead I wanted to share what I, as a patient over 60 years old, personally experienced with Erbitux. The pain and suffering it caused me were excruciating beyond any of the other treatments. My face literally peeled off as the Erbitux supressed the EGFR that the radiation damaged skin needed to stay on and heal.
Meanwhile, since my HPV+ tumor did not express much EGFR, it ended up not helping the radiation kill the cancer.
I am always puzzled by the manufacturer's assertion that Erbitux is less toxic and somehow better for the patient.
So my advice it to watch your mother's face. If it seems fine, that is great. But don't let the doctors string you along that the worse the reaction the better the drug is working. That is true only for the acne that many get.
The answer on Erbitux will not be known until more clinical trials are done. I wish the best for your mom
Charm

As a patient who was fortunate enough not to have had to endure the hell that is rads/chemo, I'd just like to share my feelings on this...

Karen,

Thank you for your "rant" on the importance of interpretation of scientific studies. Paying attention to study design, results, conclusions and how they will apply to a specific population is so important. Sometimes, we see a headline or read a news article and it can misrepresent the study/findings/implications even more. It can just make things more confusing for many of us.

Research is a work in progress. We as cancer patients would like to see that progress come faster, of course.

Thank you all for sharing your personal experiences with different treatment protocols. There are so many tough decisions that have to be made expeditiously, but also with informed consent.

Your dads cancer is very similar to mine... I understand he's older, but if they act quickly surgery and then rads and chemo it's catchable at this stage. (assuming his cancer isnt highly aggressive) the surgery isn't too bad of a recovery - though it may take a bit longer because of his age. Radiation is hard but doable. Oral cancer is not a good way to go. I would do the surgery then see what the results reveal. I have a small lisp and some scarring from the neck dissection - getting my shoulder and neck back in shape with physio took about 3-4 months. But I'm about 99 % - now 14 mos out of radiation 16 out of surgery.

Take care and god bless.