It's not easy, and one of the hardest treatments they say to do. I was fine until I arrived home on the 6th day, and then went straight to the ER by ambulance. I was 48, exercised my whole life, and didn't think anything could knock me down, not even cancer. I was wrong, and this treatment wasn't for me, and went into septic shock, lost 100 pounds, plus a host of other illnesses, which hospitalized me for 6 month, paralyzed from waist down for 10 requiring to go to a nursing home, and now blind in one eye. Actually, I did not even know what chemo I was getting lol, but I'm still here 3 years later, and who knows what would have happened otherwise, and was not debilited by any surgeiries, except for the neck dissections. In retropsect, I would not do it again, and have not fully recovered yet, and my local oncologists, not my treatment doctor who I never went back too, said it was too much chemo. I know others who went though this with no problems, minus a hospitization or two lol, so everyone is different. Good luck with your decision. It's still good if you have choices.

[quote=PaulB]It's not easy, and one of the hardest treatments they say to do. I was fine until I arrived home on the 6th day, and then went straight to the ER by ambulance. I was 48, exercised my whole life, and didn't think anything could knock me down, not even cancer. I was wrong, and this treatment wasn't for me, and went into septic shock, lost 100 pounds, plus a host of other illnesses, which hospitalized me for 6 month, paralyzed from waist down for 10 requiring to go to a nursing home, and now blind in one eye. Actually, I did not even know what chemo I was getting lol, but I'm still here 3 years later, and who knows what would have happened otherwise, and was not debilited by any surgeiries, except for the neck dissections. In retropsect, I would not do it again, and have not fully recovered yet, and my local oncologists, not my treatment doctor who I never went back too, said it was too much chemo. I know others who went though this with no problems, minus a hospitization or two lol, so everyone is different. Good luck with your decision. It's still good if you have choices. [/quote]WHAT THE HELL! This is so far beyond anything I have read so far as a reaction to TPF induction. Especially for an otherwise healthy person and then within six days of starting TPF you go down this horrible path makes me really have to rethink blindly going "all in" on adding TPF to the sequence ahead of standard chemo-radio treatment.

Have you come across any other instance where someone had a reaction that in any way comes close to your experience? I have read about others who had to cut back on dosage or even quit the TPF regime and the typical nausea/vomit stuff. I did read about someone who lost 50% hearing and I do not know if that was permanent or temporary.

God bless you are alive my friend.

Don

Don't mean to deter you or anything, just telling what was my experience. I haven't heard of similar, and neither have any of my doctors. My current MO said he never heard of someone having a reaction like I did to induction chemo his whole career. Like mentioned, my case is probably rare, and most do fine.

Also, 10 percent or less of oropharyngeal SCC patients present with distant Metastases at diagnosis, so hopefully that's in your favor.

[quote]Also, 10 percent or less of oropharyngeal SCC patients present with distant Metastases at diagnosis, so hopefully that's in your favor.[/quote]Thanks for the insights Paul. There are likely some cases where there is some distant metastases but not detectable as in the case of small cancers too small to be picked up on PET-CT. And in some of these cases, cancer recurs.

The pro induction wisdom goes, blast all comers with induction, kill all the small stuff, and reduce the incidence of recurrence and suffer through the side effects.

As no definitive studies have confirmed this, I guess the medical professionals are still split on the efficacy. So, the decision is based some on less science than desirable. Oh well...

Thanks for the insights Paul

Don, Ive been on this forum for 5 1/2 years and seen 4000+ members join after I have. Paul is by far the worst case scenario of what can go wrong. I have never seen another member have this type of reaction. Not to discount that this can happen, of course it can but the odds are very slim. Please carefully weigh everything when making your treatment decisions. If you are having doubts about the treatment plan offered, go for a second opinion at another top cancer facility.

Hi, Don
if you google up something like 'tax 324 HPV positive' you will find a number of reports on this clinical trial, and speculation on the results; be sure to focus on the HPV+ results.

If you go with a standard CRT with cisplatin or carboplatin, you might enquire about an accelerated RT schedule. Again, much debate.


Whichever treatment you select, please do your very best (with nutrition and hydration) to stay on protocol. Once the RT starts, you want to do your level best to stay on schedule: it does make a difference.

I wish I had a time machine to lend you. If we could go ahead even a decade, we could have a better idea as to which therapy works the best.

Maria

Don,

As one who has suffered a recurrence I am a big advocate of hitting the cancer with everything you can the first time out. You do not want to fight this battle twice.

On the other hand I am also a big advocate of getting a second opinion (or even a third). Being located where you are is great in that you have a number of world class medical facilities available to you. I would recommend you get a second opinion from a CCC before making this decision.

Hi Don, I'm sorry you've got to go through all this, but go one step at a time and you'll manage fine. My brother had induction chemo, and coped very well. His most difficult time was towards the end (and just after) radiation treatment completed.
He was very conscientious about water and nutrition, drinking green tea, eating dark chocolate etc. I'm not saying some of these things helped clinically in any substantial way (apart from the water and calories which ARE CRITICAL), but at a time when he felt otherwise utterly powerless, it helped him emotionally to be following his health routines strictly.
Re the induction, who can say how you will manage it - I can only say we were surprised he coped as well as he did with it - he didn't feel a million bucks, but we were waiting for it to get very bad and it just didn't. I wish you the very best.

Hi Don. Welcome but sorry you have to be here. My husband was diagnosed 4 years ago next week with almost the same diagnosis. You can read my signature for the info. John had daily radiation and then Cisplatin every Friday for 7 weeks. John has some hearing loss from the Cisplatin but it didn't show up until his last treatment. These treatments are tough BUT you are tougher and will get through this. Continue to ask any and all questions. We like to help others.

Have any of your doctors suggested a PEG tube for nourishment and hydration? This is a sometimes "HOT" topic here but I see it as just another tool to get you through treatments. My husband insisted he wouldn't need one but thank God he got one. Even with the PEG he lost 30 lbs. Your body needs to be nourished and hydrated to get you through this. John started to use the PEG around week 3 and then had it removed around 6 weeks after treatments ended.

John made sure to swallow water every day since it is important as you can lose the ability if you don't continue to do so. Good luck as you start your journey. I know how totally overwhelming all this can be.

Don

We all have our own opinions on TX, usually based on what our doctors have told us. I doubt that any but a very small percentage of the OCF members have had induction chemo prior to TX and the few I've seen post have had a very hard time of it. My MO at the Georgetown CCC actively opposed any TX but concurrent radiation and chemotherapy. I asked this time again and he just said the studies are not there to show it's worth especially since there are reactions like Paul's.
Of course, he's now more cautious after being fooled by the initial glowing reports of Erbitux. He will not longer prescribe it for patients due to the high rate of recurrence he has seen at my CCC, such as I had.
I wanted to hit the cancer with the latest and greatest the first time around, so I actually asked for Erbitux. Bear in mind that the gold standard for treatment is IMRT and platinum chemo (cisplatin or carboplatin). Everything else, induction, other chemos, etc has not been proven to be better and they all have additional risks. Just my opinion, but why not get another doctor's opinion? DavidCPA, our super success story, went to 4 doctors before getting his successful TX of gold standard radiation and platinum.
My other advice is to get your blood work done and tested for your TSH (thryoid hormone) level NOW, before TX. It's amazing to me how many oncologists are simply clueless and ill informed about the need to have your TSH level the same after TX as it was before TX. Instead they unthinkingly accept the lab testing fiction that any TSH level between 0.4 and 4.0 (some even go as high as 5) is "normal" and okay. No scientific basis for that at all if you cross examine them. Even my CCC was very bad on this and I had to go see an endocrinologist who went to medical school in the 21st century. It's just checking off a box on the panel tests you are getting now. What is "normal" for one individual is not normal for another. So get your TSH number now.
Charm