Please, please, Heather and Seth, get him off the Cisplatin! I was pretty sick with that and had hearing issues, which I was told by one oncology doc would become deafness if I continued on the Cisplatin. I was a stage IV, and was switched to a mix of Carboplatin and Taxol, which I had four times with no nausea or any side effect exect hair loss, and that grew back. I am more than three years out and doing just fine, so the second chemo mix was effective and much easier to take. As a much older doc said to me when I mentioned the hearing issues, "Won't be much good to cure you if you end up deaf as a post." Don't know if I completely agree, but you sure don't want a deaf brother/friend. I am very serious about this and encourage you in the strongest way to take action about this at the first opportunity.

I just really appreciate the update, it means alot. I was really concerned, thank you.
There are other options out there. I could see continuing this if he was less symptomatic. I guess I'm shocked that his health care team hasn't approached this? So many prayers for you.

Michael, Seth and Heather,
Thoughts and prayers with you. Sorry Michael is so sick. I can't believe myself how sick this treatment makes one. John has zero energy and not eating. He resists and won't take more than 4 cans of tube feeding a day and losing weight. It's hard to know what is to be tolerated or needs to be evaluated. I feel between a rock and hard place on what I'm told he needs to be doing and what he is capable of doing. He sure can't swallow the fish oil pills the doctor keeps pushing! He is starting the gag problem that Michael has had for awhile now. I wonder if the chest discomfort Michael has might be in the esophagus - that is where John feels changes especially when he tries to eat. (He is on a similar treatment as Michael - has had his second chemo).Heather you are not alone in feeling pretty helpless watching him change. It sure sounds like Michael deserves evaluation before another round of chemo.
Peace,
Janet

Michael, Seth and Heather, My thoughts and prayers are with you. Oh my gosh, I am sorry to hear how sick Michael is getting from the treatment. Heather, thank you for posting, wish I lived closer to help in some way. Take Care and God Bless, Carol

Heather and Seth,

I am so sorry to hear that Michael is this sick. Just so you know, not every H&N patient has had chemotherapy along with radiation. My husband has a risk factor for chemo that the chemo oncologist felt was greater than the ~10% added survival factor warranted. So he had surgery, a neck dissection, and IMRT. We used every kind of complementary medicine ever shown to help with side effects. He used acupuncture before radiation began (for nausea, pain, anxiety) and is still going. He did Guided Imagery and auto-hypnosis specifically for healing cancer and relieving stress. He took a few supplements that we saw recommended on Dr. Andrew Weil's website (the Vitamin Advisor) for patients going through radiation/chemo. He had a very easy time through the majority of the IMRT treatment. We both realize and wonder whether the absence of that ~10% incremental survival rate is going to bite him in the future. But the decision was made and we're happy at this point he didn't have chemo due to his risk factor. Now that he is eating again, I'm getting ready to start preparing a cancer prevention diet based on info I've found on Brian's Cancer News section and a few other sites. My only real point in saying all this is that if Michael needs to quit the chemotherapy, I (personally) wouldn't sweat it too much. I'm pretty sure there are a lot of people on this forum who might disagree with me, but I thought I would give you one perspective that might be unique (for better or worse).

Take care, and I hope things improve soon.

Connie

I think the main problem with a lot of people is the use of cisplatin -- my husband Barry is getting the newer platinoid drug (carboplatin) which acts in about the same way as a cancer radiosensitizer and is FAR less toxic, as well as being easier to administer. When people ask him how he's handling the chemo, he says "it's been a non-issue." There is less data on efficacy, which is why a lot of doctors still use cisplatin. Barry was willing to take the chance...

An aside. Last spring we gave (palliative) chemotherapy to one of our dogs who had breast cancer. In discussing which drugs to use with the veterinary oncologist, she strongly recommended using carboplatin over cisplatin (although it was more expensive) because of cis' s toxicity and reaction issues. In other words, don't use this on a dog. The dog got carbo and had no problems either. So we were already alerted to the issues with cisplatin when Barry's cancer was diagnosed.

His problems with treatment have primarily been with the radiation, such as mouth and throat soreness, thrush, etc. as well as fatigue although that's not been too severe yet (he's only finishing 4th week).

Gail

We ended up staying 6 hours last night at the Urgent Care Center, because Michael had a temperature of 101.1, and the on-call oncologist said that if the temp goes above 100.5 that he should come in to be seen. They also were concerned that he might have a blood clot in his lung (a pulomonary embolism). He had a CT Scan done, but the B-team screwed it up. The contrast got back primed into his IV bag instead of directly flowing throught the port so it got diluted and the CT Scan didn't come out clearly.

We saw doctor Pfister this morning and he said that they wanted to wait on giving Michael the chemo today and tomorrow as originally planned to rule out the possibility of his having a PE. Also, his white blood cell count was low and the doctor wants to check and see if it goes up or down before recycling his treatment. So, tentatively, we have it scheduled to resume on Thurs & Fri. If, depending on the results of the cell count and CT scans, they may choose to change the chemo therapy to a different type.

The alternative drug he mentioned takes 4 days to adminsiter but the side effects are SLIGHTLY less toxic. They are also concerned about the hearing loss. Since he has had a noticeable loss already (a side effect of the Cisplatinum) that might be another reason to change chemo drugs. If the current chemo was to continue, there would be a greater chance of more hearing loss. The only down side is the alternative chemotherapy, is shown in a few studies, to not be quite as effective in treating Michael's type of cancer.

I'll keep you all posted on events.

Seth-
I am sorry for the problems you guys are facing. I can relate. My mom has had her chemo revised and then cancelled due to her becoming too toxic. The stuff is nasty. (seems to be worse than the disease in some cases) I hope that they find what works for him and brings him to a cancer free status. Best wishes!
Tami

Seth --

Ask your doctor about carboplatin -- our Hopkins medical oncologist (he knows who she is as we told him when we saw him for 2nd opinion) said it appears to be about as effective as cisplatin for Barry's cancer (and he is stage IV SCC). This takes only one hour to administer and so far has caused Barry 0 issues -- also three others patients are getting it here and also, no problems. It can be given weekly or in three doses two weeks apart.

Because there is less long-term data on the newer drug (carbo) many doc's don't use it -- Barry was told this and said he would take a small risk to avoid the severe side effects, one of which was hearing loss as he already has high-end loss due to infections as a kid.

The chemo is used as a radiosensitizer for the therapy -- it is not the main player in the treatment although combination chemoradiation has been shown to have a better control and long-term survival rate than radiation alone. This difference is significant but not immense, according to the papers I have read. IMHO it doesn't do much good to beat someone's physical well-being to a pulp (including their immune system) to achieve a few percenage points more "statistical" improvement. Ask for some numbers...

Anyway, good luck and tell Michael we are rooting for him!

Gail and Barry

Seth, thanks for the update on Michael. Sorry things are so rough for him right now. Please let him know we are thinking of him!! Take Care...Carol