Seth-
Just wanted to let you know that I went through a very similar situation with my Mom a few weeks ago. She had the iratractable vomiting for 5 days and had to be fed through IV for 10 days. (was hospitalized for 14 days) She could not hold anything in her digestive tract with out vomiting. But the good news is that he will get better. My mom did have to have her chemo cancelled (received 2 of 4 weeks). the doctor felt that due to her level of toxicity that another blast of chemo could be fatal so they stopped. We are hopeful that it was enough and time will tell. It was a rough road but she is getting a little bit stronger each day. I know how hard it is to have a loved one in such bad shape. I felt helpless. But just hang in there-there is a light at the end of the tunnel! I am sorry that you have to see Michael like this! Hugs!!
Tami

Seth,

I am really sorry to hear of the difficulty you and Michaelii are experiencing. If it helps, I was at this point EXACTLY and remember my throat and mouth were so raw that when I vomitted, I screamed in pain. I ended up in the ER begging for them to just knock me out because it hurt so bad when that acid came up. I couldn't put anything in the PEG for many weeks and ended up feeding through my port for months. My ears sounded like locusts or secadas in the summertime when I was growing up. I still experience that sometimes at night as I am winding down trying to go to sleep. I tried the Reglan and just about everything else known to man and even tried some things that were experimental.

Is Michaelii taking the amofostine (Ethyol)? I had terrible rash and fever from it and after about 3 rounds of the ER and hospitalization, they determined I was one of the many that developed an allergic reaction to it.

At this point in treatment I had two 75 mg Duragesic patches because of the pain and no matter what, don't let the pain get overwhelming or it just makes things worse.

The benefit of the chemo is that it helps the effectivity of the radiation. I vividly remember being totally zonked before the last round of chemo and the pharmacist was in the hall outside of my room delivering it to the nurse. Suddenly, I could hear clearly as if they were yelling..."let's go ahead and give it to him, I don't think it will kill him..." I was scared sh*tless but went through with it. 3 weeks later I felt it was worth it when I got the news "cancer-free".

Hang in there, Seth, this is rough, especially for the wonderful people that are by our side through it all.

Ed

After I read all the posts from people who are being really beaten down by their treatment, there is one almost universal thread -- they are being given cisplatin. Why is this drug being used when others exist which do not have as severe side effects and do as well (as far as the literature seems to indicate) as a radio-sensitizer for the radiation (which is the main work-horse in the treatment)?

This is not a rhetorical question -- would like to hear a rationale. The only one I have been given (in questioning several MO's) is that the drug has "more data" or "more history" which is not the same as "significantly more effective."

I hope that Michael rallys and comes through this with an successful outcome -- after all he has been through he deserves it!

Gail

Seth!! The docs can insert a feeding tube into the intestine (can't remember whether it is the duodenem or jejunum-I think it's the j one-a tube.) Just ask them about it-I'm not sure how "well" they have to be before they do that. Buddy, stay STRONG-he's getting the HARDEST treatment. Michael needs to get nutrition, I wouldn't be surprised if they didn't do it via IV (TPN).
I will have my hubby and dad pray for strength for you guys. The hospital has fully fixed my dad in these situations-BE STRONG-look at all these wonderful people who have made it. And are they truly considering another cisplat--uhhhhh....noooo?
Gail-my father has had all doses of Cisplat and he tolerated it quite well-I'm sure there are many others who have too. You know that everyone is different. Yes, Michael does deserve the best outcome!
Prayers and hugs to you all
Seth-we will come to your resort and celebrate next summer!!!!!!!

Michael, just wanted to share that I have lived with tinnitus for about 10 yrs. The only time it really bothers me is when I want quiet around me.[which I cherish] The suggestion about having the t.v. on or soft music playing And in YOUR Case, hearing the OCEAN is a great one. By the way, I had an ENT tell me once that tinnitus comes from the brain- not your ear.{I did not believe him] Hope these last few weeks get better for you. Please don't take the peg out until you can eat comfortably and alot by mouth. The effects of your treatment will last awhile. You and Seth hang in there. Amy

Hi Seth and Michael,
Hope things are settling down. These Weeks 5,6, and 7 of treatment make the earlier weeks seem like a piece of cake in retrospect, don't they? Maybe I'm just forgetting the stresses of that time and maybe we'll forget a lot of how rough this treatment is once time has passed.
Thinking of you guys and hoping for the best.
Janet
PS. I too wonder about the differences between cisplatin and carboplatin. Our doc did not recommend a substitution for John's third chemo but rather no third chemo at all - maybe it depends on response and side effect profile. The radiation side effects are enough to handle at this time.

I've read the two randomized-trial experiemnts about the bnenefits of three treatment of concurrent cisplatin duting chemo, the ones that appeard in New England Journal of Medicine a year and 1/2 ago and those results arecertainly VERY good data. Partly because there's just such a large sample for each of those studies but also partly because the design was truly experimental. My MO, who I discussed these articles with, after I had read them (was given copies by the folks at Dana Fraber) said that prior to those two huge, experimental pieces of research there was mixed data on the effectivemness of concurrent chemo of any sort--and many of the studies were not truly experimental but quasi-experimental which means there was not random assignment of who got the treatment and who was in the control group which measn all sorts of other things COULD explain any difference in effectiveness that did turn up (I'm sure Gail knows this but often other poeple don't really understand how important it is which is why I mention it here).

I'm not aware of what research exists on the effects of carboplatin or other types of chemo as concurrent chemo but is it really as sound as the cisplatin data? Because I suspect it is not and I am actually glad to see (as someone who has struggles to teach people of all sorts, including people in medicine, statistics and experimental design) that the relative soundness of one setof data over another is given attention and acted on accordingly--to me, that is good practice.

And as Shawna said, cisplatin is actually, for a large majority of patients, quite a tolreable treatment with the anti-emitics that are out there. For many all they actually need is compazine to get through. This is according to the chemo nurse I iad who has been treating people with cisplatin for decades--she did say that ebfore ther ecent anti-emitics came out this was not true!

Sorry, I had a phone call and so posted that before saying what I wanted to say which is that I'd be interested in reading data on the efficacy of other less harsh forms of chemo, it sounds like you have some articels you have read, Gail, that I didn't know about.

But also. that along with quality of life, there is some pretty good survey data that shows patients really do rank highest that they get *effective* treatment--in other words, treatment that will most likely save your life ranks even higher than quality of life for the majority (though of course, everyone is different tand th majority is by no means EVERYONE).

I wish that more often doctors tried to discuss the statistical trade-offs with patients and asked the patient to rank what was most important to them and used that in the decision process. Instead of saying "if course, this is the best treatment". But my guess is that if they did that, many patients would still chose the treatment with better-documented effects even if it is somewhat harder.

I know my Mom's chemo was cancelled early due to being intolerable but she had 3 agents combined(docetaxel/taxatore, cisplatin & 5fu). Her chemo onc. felt that she reacted the most severely to the 5fu. Not sure how he can determine that but I just wanted to put that on the record if anyone is questioning what chemo agents to use and has read about my mom's unpleasant story. I am unsure if my Mom could have tolerated Cisplatin alone...I guess we will never know.
Tami

Hi --

I read another paper -- just as an abstract-- that did a survey of cancer survivors and asked them to rank post-treatment quality of life vs. additional (survival) time and a slight majority wanted improved QOL over time. Now without the actual paper I do not know the details but the gist was that many patients had long-term disabilities that greatly reduced their enjoyment of life and they would have preferred a less-drastic treatment even if it somewhat reduced their chance of cure (or control).

This is not at all unusual -- there have been lits of similar observations and it's been discussed on this forum before.

I did ask our nurse today about her experience with cisplatin (which was standard where she was before, M.D. Anderson) and she said it was a very hard drug on the patients and they had lots of sick people. She said her (current) carbo and carbo/taxol patients are generally handling chemo better than her current cis patients. There are some on a trial that get cisplatin every day (a very low dose) and apparently do better -- one fellow we see every day said he was sick first week but now has adjusted.

She also said she felt that current treatment guidelines and usage have not kept up with some developments in the field -- e.g. the much reduced oral side-effects (mucositis and thick phelgm, in particular) that she and the other nurses are seeing in the tomo as compared to conventional IMRT patients. It will be a long time before this is out in the literature as lots more data, including long-term follow-up, is needed to change current guidelines.

Gail