My initial consult with the MO suggested doing TPF induction sequence then standard chemo-radiation. The RO is barely inline on this stating there are no conclusive studies showing improved outcomes and fairly significant side effects. The HNC surgeon made a general recommendation to go for the most aggressive option as I am young and strong and likely to tolerate the max treatment regime.

I was leaning pretty heavily toward doing the TPF induction even after the RO consult but after more research including what I read here, I now am not so sure.

Apparently, TPF induction does indeed generate numerous side effects, some quite extreme. I searched to board and gleaned what I could and not convinced either way. In fact, seems like more posts on bad side effects instead of gliding through induction.

What is your experiences with TPF or even PF induction treatment?

Did you make it all the way?

Did they cut it short or reduce the dosage?

What side effects did you experience?

Thanks
Don

Alex had TPF induction. He was severely underweight to begin with and had a very tough time. His lung collapsed and he eventually underwent thoracotomy at a time when it was extremely dangerous to do so but he survived.

My thought in your situation, is that the RO is the overriding expert for radiation and chemoradiation and the MO should be the overriding expert on chemotherapy. Unless one is clearly more qualified than the others, this would be my leaning. There are many studies that are inconclusive but the doctors use the treatments anyway. the induction regimens using taxotere look very promising indeed and probably need to be bigger and longer before we can say there is a definite advantage.

You choice when it all boils down is trading off a better chance of it not coming back vs a greater chance of having worse side effects which could be long term, life changing and sometimes fatal.

The question that we asked ourselves was this:
Which would give us cause for more regret or despair: Choosing chemoradiation and having the cancer come back; or suffering long term (possibly life changing) side effects and forever wondering if it was necessary?

For us the answer became clear - and Alex chose to throw everything at it and suffer or dodge the side effects. Once you have made your decision, whatever it is, move forward firmly and decisively. Do not second guess yourself and do not allow yourself the "what ifs" which can do your head in if you let it.

If you had asked this question whilst Alex was undergoing induction, he would have asked you to shoot him, but 6 weeks out from chemo with a "complete response" showing on the PET, he would have said it was probably worth it. Today he is fairly well, has gone back to work full time, but is still painfully thin and can't really eat much other than soups and soft stews. His response now is that he would do it the same way all over again.

Essentially, we got through all the treatment that was thrown at him and Alex is doing very well 3 years out. Despite his hardships, he has a new perspective on life and only said to me yesterday that 2012 was his best ever year (the year he came off all drugs, got a job finally waved his ex into the sunset, and started "practicing" with soup). He describes himself as "content".

I see a lot more than "content". He is in the process of renovating the apartment and I have never seen him so fired up! His experience over the last couple of years has taught him that big successes happen in little steps. The bravery emerges in taking that first step ... He's already talking about what the kitchen and bathrooms should look like and we haven't even finished the living areas yet

Is induction chemo TPF followed by CRT that unusual?

My MO is recommending I go this route and I am leaning hard this way but really would like any and all comments from those who did TPF induction chemo.

It is characterized as "aggressive" treatment so I am just trying to translate that into real world experiences.

Thanks in advance.
Don

Don

I'm feeling a little snippy waiting out my MRI results so I wanted to address your frustration shown in changing the subject line.
In my opinion, since your introduction thread asked the same questions about induction chemo and there were 4 pages of back and forth with several detailed posts about induction chemo, it's not surprising that the posters who have already shared their experience with induction chemo did not cut and paste their reply again. So really there has been more than one substantive reply to your question. I'm pretty defensive about OCF's compassion and response rate, so I'm setting the record straight here.

I understand your frustration that apparently the majority of doctors who treated the OCF community did not share your team's view of induction chemo as being the way to go. It's good that you started a new thread focused just on this dilemma. Most all of the posts I've seen on OCF about induction chemo were about how hard it was on them. Without rereading the four pages on your other thread dealing with induction, I don't remember if anyone linked to this clinical trial on induction.
In reading the summary below, it does emphasize that its so toxic that if it doesn't work right off the bat the first time, they are going to stop it and proceed to regular TX.
[quote] Therefore new therapy concepts are needed. The advantage of the induction chemotherapy is the possibility of tumor response assessment during chemotherapy and may present a selection criterion for organ preservation.
In order to minimize the time between chemotherapy and surgery it is important to have an early answer for the tumor response. In this study response will be assessed after the first cycle of chemotherapy. Patients showing no tumor response will be operated at once. The other patients will receive further cycles of chemotherapy.
Toxicity of the induction chemotherapy have to be moderate because surgery should not be delayed.

To improve the tolerance of induction therapy the medication dose isn't given on day 1 every 3 weeks, but is dispersed on day 1 and day 8, q3weeks.
[/quote] Induction chemo clinical trial
The excerpt above gives the hope and the fear of induction. It could very well be that there are no more answers coming to you from OCF than you have already received. It's a tough call and sounds like a perfect reason for a quick second opinion.
This whole treatment area is so darn frustrating with very few definitive answers.
Charm

For induction chemo the standard is 2-3 cycles of TPF, DPF, PF or similar, followed by 6 or 7 weeks of concurrent chemo radiation. Induction Chemo is very good at killing the cancer cells, but it does not last, and cancer will come back in less than a year, so additional chemo radiation has to be given.

Are you doing in the hospital? I did, and had to stay for 6 days.

The first day infused with 750mg 5-FU every 24 hrs days 1-4, odesnestron 12mg, prochlorperazime 10mg, lopinavr/ritonivar (200mg/50mg ) 2tab, Emtricitabine/tenofovir 200/300mg) 1tab, atrovaquine oral susp 10mg

The 2nd day I had my port a cath installed, and 75mg of Taxtotere, and 75mg of Cisplatin with a Mannitol, dexamethasome 20mg, apreepitant cao 225 mg, prochlorpetzine 10mg.

3rd day Taxotere 160mg, Cisplatin 160mg, oxycodene, glucose, 5-FU

4th day 5-FU, oxycodene, glucose, insulin.

5th day 5-FU, insulin, prochlorperazine

6th day 5-FU , lopinavir/ritonsvir, prochlorperazine 10mg tab, insulin, magic mouthwash, odesnestron, dextrose, atovaauine, ramapril, oxycodene.

In addition, some other meds were given, blood tests administered, and always always on an IV, blood, and prescribed meds upon discharge. I walked out of the hospital, went home, and took an ambulance to my local hospital, not treating hospital, where I stayed for 6 months.

I did not see Charm's post, and was probably writing mine.. My induction was in 2009, so I don't know what changes they made now.

Don

I did a quick search on OCF for induction and found a poster Pam M who decided to go with induction therapy and apparently did okay. Perhaps she will weigh in also. I remember she was torn between differing doctors opinions over whether induction was too aggressive or not. You could always start it and if it's too much just stop it. Still 3 out of 8000 is not a large cohort so I think that yes, right now induction is not common.
Charm

Thank you for your thougtful replies. I will go back and reread the other posts. I guess there is so much info flowing at me and so much groping around for firmer understanding that I may not be absorbing as much as I should be of what is being shared.

I am a tough old dog, so feel free to let it loose on me. Maybe I am expecting more clarity and more defined "rules" to this game and the big takeaway for me is to learn that nothing about cancer is that simple or clear as each facet of the disease is unique to the circumstances of each person.

Thanks again for helping me better understand and cope with this horrible diseaase. Its been just over a month off the starting line for me so you appreciate me sounding like a dumb ass with a blindfold on. With old hands like you and others I am learning fast.

Don

Don

Oops, forgot to link to that old post about induction
induction search
There were more hits but you can type in induction in the search box at the upper right and skim them.
Charm

[quote=Charm2017]Don

I did a quick search on OCF for induction and found a poster Pam M who decided to go with induction therapy and apparently did okay. Perhaps she will weigh in also. I remember she was torn between differing doctors opinions over whether induction was too aggressive or not. You could always start it and if it's too much just stop it. Still 3 out of 8000 is not a large cohort so I think that yes, right now induction is not common.
Charm [/quote]
Frank,
The MO stated that his plan would be to start induction and if side effects were bad enough he would just stop and go to regular CRT. Then come back after CRT is done and maybe do the rest of the induction. His main goal is to do as much as possible to rid my body of any small cancers that may be in my body but not showing on the current test results.

Thanks again,
Don

Don-
Paul completed the 3 cycles of the chemo with Taxotere, Cisplatin, & 5 FU with pretty much all the side effects but pretty mild. The always hung a bag of anti-nausea meds with the treatment. When the pump came off on Fridays for the 5 FU he received a steroid injection to keep up the white cell count. 80% reduction in tumor after 1st round.

He has now completed the last 4 chemo treatments and 32 radiation treatments with only 3 to go. This 7 weeks and the upcoming ones will be the toughest.

At this point if we had the choice for a "do-over" we would choose the same course even knowing some of the radiation side effects may be permanent.

Awesome!!!

Don, hang in there with that good attitude-it's not easy dealing with all the facets of OC and info overload is something I think most of us can relate to. Good thing you're a "tough old dog", though-save it for the treatments, side effects, idiotic and uncaring nurses/docs, conflicting evidence, "support" issues etc ad nauseum; and let comments-even "snippy" ones-roll off your back. (ps: In my opinion Charm is entitled to a "snip" or two!) ;-)
You can always try a search-either by topic or poster-for a bit more clarity in this difficult arena. Best of everything to you, my friend-you'll find much useful intelligent info and many amazingly friendly and helpful folks here-abouts. Stick with it and post WHATEVER you feel is a valid need.
Gordon

Gordon

I'm happy to say that Don and I have exchanged PMs and have bonded after the standard big old dog growling at each other. But thank you for your support.

Don

I'm glad to see you posting here more often. I did go to the ACS forum you mentioned but found it not to my taste but very much as you described it.
I see from your 4/20 post in another thread that you are also a sly old dog. Usually it's EricS touting the vaporizer and medical MJ
Charm

How is everything going, Don?

I am doing great today, yesterday 70%, tue 40%, previous 8 days 000. The TPF induction cycle 1 put me down and out. Pure fatigue, all I could do was hydrate and take meds and pee.

Hoping round 2/3 are more kind but will take what is given. You can join my blog if you want more details. I don't post much of the daily updates here.

don

Don

Way to go brother.
Charm