My husband has a t1 base of tongue cancer with 2 lymph nodes in his neck. He had no symptoms outside of the lymph nodes. His lymph nodes showed poorly differentiated SCC. The source cancer biopsy came back as moderately differentiated. On Friday he will do his simulation for radiation therapy and today we had our chemo consult. We were surprised and overwhelmed that we had options on the chemo front. Here is what they are:

1. 3 treatments of Cisplatin (which we understand is the gold standard for chemo for oral cancer patients) with potentially very strong side effects.

2. Weekly treatments of Cetuximab which is a newer option for treating oral cancer. Long term results less known. Side effects much less severe.

3. Participation in a drug study (RTOG0522) in which he would be put in one of two groups. One would get Cisplatin. The other group would receive both Cisplatin and Cetuximab.

4. Participation in a drug study (RTOG0435) which he would receive Cisplatin and either a placebo or the drug Keratinocyte Growth Factor (KGF). KGF is showing positive signs for reducing the severe mucasitis that comes with the radiation treatment.

We are leaning towards option 4, but would like feedback from anyone who can help us. As with every appointment since we received this surprising diagnosis, we are overwhelmed...even though our treatment team spends so much time and patience with us explaining options.

We welcome any feedback or thoughts from a patient/caregiver perspective.

Kindest Regards,

Margaret

Margaret,

The following represents my opinions/expriences, hopefully you may find this helpful.

Such decisons are painful. The first thing you have realize is that people react differently. I know littlle about KGF but from what I understand (I am not an MD), it adresses radiation induced mucositis. As such it does not weaken or destroy cancer cells (as far as I know).

Your question is cisplatin and ??

Both cisplatin and Cetuximab attack cancer cells (amongst other things). They do this differently. Cisplatin acts within the cell while Cetuximab inhibits an extracellular grow hormone receptor. In my opinion (!!!) it would seem to be best to attack from as many fronts as you can as long as it is safe. ... and how agressive your MO is.

Sideeffects:
It is said that Cetuximab has fewer side effects. As I was told a significant fraction get a skin rash, No big deal when you are trying to cure cancer. There are 3-4% severe reactions. I was initially only going to be treated with Cetuximab in conjuntion with radiation.
On the 24th of May I was given Cetuximab and had an anaphylactic shock after only 10 minutes, blackout etc including a visit to the ER. The agreement I had with the MO was to use a test dose, which did not happen. (I used to work with mice a long time ago). Since then I have talked with other MOs and they all say that they have lost people on Cetuximab.
I think that if one can handle it, the drug is good, I would use it despite of the above, if I could.
However one has to be extremely vigilant during the first infusion because things may happen very fast.

Cisplatin (I am getting this now weekly, yesterday was the first treatment so take what I say about my experience with a boulder of salt). They do it weekly because I also get radiation, a fairly wide field.
Your team must have told you about the toxicity of the drug it also it makes you nauseous etc. If you get this weekly they give you a smaller amount (ca 1/3) but more frequently. For me this was for me a non event, nothing happened at all.

There are other posts here where people only had 2 out of 3 cisplatin treatments. Some also switched to carboplatin which is less toxic but some say is also less effective.


Best wishes!!

Markus

Thank you, Markus. Wow, the Erbitux experience sounds scary. I wish you well on your treatment path.

Kind regards,

Margaret

Margaret,
Actually it was not so bad for me, I totally recovered within a few hours. It was more scary for the people around me, especially for my brother who visited me from Switzerland and whom I told that this is not a big deal, we might expect a little rash...
It was however a mental letdown because the ONE modern targetted drug that existed I could not use. Grrrr!

Hi, Margaret, I can weigh in on the Erbitux. Jon's initial infusion was really scary also. Wild bloodpressures- heart rate going crazy- etc. However, after slowing down the infusion rate - what was supposed to take a couple of hours ended up taking all day with his Doc in attendance- he got through it and was able to take it thereafter. He did have most of the side effects described on the drug info sheet. He also opted for Carboplatin rather than Cisplatin because he had hand tremors and some hearing loss before tx. started. There are alot of hard decisions to make Amy in the Ozarks