Two major things with Erbitux, although not common, but are severe allergic reaction, not the rash, and the other is heart failure, and one reason they monitor you during the infusion, and give Benadryl during. It's usually the first dose, during or after, can be the 2nd dose. Maybe call the doctor just to be safe. I didn't have a good time with mine, and I was 48. Good luck.

Hi everyone,

So after my dads first cycle with Erbitux, carboplatin and docetaxel which I mentioned before, he didn't take it to well and had to spend a couple days in hospital.

On the second cycle the doctor increased the Erbitux doseage and reduced that of carboplatin and docetaxel in fear that it would make my dad sick again. The doctor also gave my dad a jab that increased white blood cells (it was quick, like 3 seconds) jabbed at the belly area. My dad didn't have such a bad reaction this time. But still had a fever. Spent couple days in hospital.

The doctor also administered Erbitux on the week in between the third cycle (last week)

today the date of cycle 3......the doctor switched my dad to xeloda (capecitabine) which can be administered at home.....and administered 2 weeks worth or Erbitux.

I feel that this is not the way to cure and the doc has given up treatment for my dad. He says the tumor is rebounding too fast in between the cycles and he won't continue to try the previous 3 drug plan as it would do more harm for my dads well being. My dad is tough and he himself has gotten into the routine where he knows he might need to stay a couple of days at the hospital after chemo. I also feel that the doc reduced the chemo doseage on the second dose so of course the tumor rebound might be faster and he didn't administer Erbitux every week which is the norm (correct?)

Does anyone else get a fever for a couple of days when they do chemo?

How many cycles could everyone else tolerate?

I don't think my dad should use capecitabine yet.....not now. We should still fight this no?

Hi... You are in a difficult position. Firstly at this point I can tell you that they don't seem to be treating to cure from what I can tell since generally chemo is not curative with this type of cancer. Unless it is a clinical trial that they have your father on. In light of this, the commitment to stick with a standard program may not be their top priority. I would sit down and ask this is the only way you will know. If the cancer hasnt spread into the lungs then I would be pushing them to do whatever they can. Perhaps more radiation? or surgery if possible. If it is in the lungs I would look for clinical trials if any are available and his health allows. Hugs and blessings to you.

thanks for your reply cheryld.

The original plan was to shrink the tumor with chemo and then do a surgery to remove the rest.

but by not giving my dad the strongest possible chemo treatment how could this be achieved?

my dad never complained about the fever (he has open wounds right now in his neck ... which really explains why he gets a fever right after the chemo)

but both he and i believe that he can stand up to this. my dad is still able to walk, carry out daily activities and is PEG tube is keeping him nourished.

I'm going to seek second opinion from the public hospitals and try to get another doctor to carry out the docetaxel + carboplatin + Erbitux plan

I clean my dads wounds everyday and during the first cycle, i saw immediate shrinkage of the tumors and my dads voice was clear and not sandy (meaning that the tumor shrank and moved away from his vocal chords).

Has anyone done 8 rounds of chemo before? A doctor from Memorial sloan kettiinger recommended this ..... he clearly would have known that my dad would get fevers and simply would need hospital assistance everytime. or else why would he say 8 rounds.

what do you guys think? I want my dad to live, hes only 61

Fever generally means an infection. That and depending on his bloodwork they sometimes suspend treatment as he could end up with a systemic infection which would most definitely kill him and likely faster than the cancer. The open wounds on his neck... is it cancer related? or is it from radiation? Its very hard to operate after radiation because the skin area does not heal properly. Did they remove his nodes surgically? It looks like they didn't but I can't tell for sure. I am assuming they radiated him on his neck - I would ask if they could maybe squeeze in more depending on how much the area received. Usually the standard treatment for this cancer (base of tongue) is radiation and chemo - which he has had. Then if need be surgery. It's the opposite for non HPV oral cancer. If the tumors are not shrinking then I would push them to move on and do the surgery. Assuming he is not too sick. I am not sure what the reason for changing chemo mid way through is - usually a dr. will do this if there are pressing medical issues - immune system bottoming out, (unlikely as they simply changed the chemo), severe reaction or symptomology (allergies, and hearing loss etc...) I would definitely get a consult - Hopkins is supposed to be a good hospital. Is Farber in NY? If so I would maybe ask them.
Sometimes drs have a high handed approach to things and don't realize it's affecting their patients and family. If you ask to speak with him and express your concerns and ask your question and still get blown off then I would seek out a different opinion, simply because you need to trust your drs. If you don't have that, you will be second guessing them and yourself. Just don't suspend treatment until you have another plan in place.
best of luck.

Steve,

Sorry to hear all the problems. This is quite complicated. Only thing I have to say is if all the chemo given to your Dad did not shrink the tumor and it grew again in between chemo infusions, this is not a good sign. Basically, the type of cancer he now has is not responding to the drugs. Even though, there may be some shrinking but it grows again, that chemo treatment is not going to work. Sorry and hope they find the right therapies.

Hi Steve, was your dad treated at Memorial Sloan Kettering at one point (seeing that you mentioned it in one of your posts)? If he was, would it make sense for you to contact them again since they would have all the previous reports and treatment notes on file. They might also take him back as a patient much faster than Johns Hopkins. I am so sorry that this is happening to your father. I was originally from Hong Kong too, and, knowing the medical system there, I can understand fully why you feel you are not getting the help you want.

Thanks Gloria.

Looks like my dad will no longer be a surgical candidate.... The plan to shrink the tumor then do surgery fell apart after the docetaxel and carboplatin failed.... A scan yesterday showed that the cancer has travelled to a part n the pelvic bone...doctor says its a small pigment only....but the tumor on left chin and center chest has shrunk significantly...

Doc has switched us to carboplatin + 5FU + Erbitux

Says that we can use rad to kill the spot in pelvic area... But right now thinks the chemo is better as can hit body wide.

Anyone had chemo wipe everything from their body? I hear its hard for head n neck cancers....

I was really out of it after hearing the news....but now I'm back in the fight...I wonder why we can't do chemo and rt the rest at the same time? Doctor thinks t too much for my dad....but if its better shouldn't we try???

I'm sorry to hear. Yes, I had high dose TPF induction chemo in 2009 with Taxotere, Cisplatin and 5-FU for only 5 days, I couldn't do more, and it killed all my cancer in two lymph nodes, and the tonsil, and almost killed me. Some have no problems, but many do due to its high toxicities, 50% inone study were unsble to finish or go on to complete CRT. Unfortunately it does not last if IC does kill the cancer, and will return in less than a year. Mine did after 8 months in the lymph nodes, but never returned to the tonsil. They are using a Erbitux to add to induction chemo or replace one ofthe original drugs, in this case taxotere.

Good luck

They are replacing the taxotere with carboplatin, the Erbitux was was already there. What is proton therapy? Could my dad get it? Could he get it along the chemo he is doing right now?