Which drug with chemo

Agree With Skiffin
Hi,

John/Skiffin and I had mirror treatments, just a few years apart. I had the same chemo drugs he did, and came thru with no major side effects or issues. I did have family with me because when I was diagnosed we didn't know what may be down the road with the treatments. I was able to work from home and did so everyday. I then started 7.5/ 39 visitsto the table and wearing the mask weeks of rads , with 1 infusion of carboplatin for every week of rads; again other that loss of saliva, taste,and a mild sunburn look to the sides of my neck, this last portion of the treatment went just as well. Again, each of us is different ,in my case I had family memebers stay with me, if nothing else they were there as my food police to make sure I ate, they accompanied me to ever tx , and if nothing else they provided me with the comfort of knowing someone was there if I needed anything. Take it a day at a time, see how your husband makes it thru each tx , he may have no issues at all,but if he does you can be there.

Linda

Blessings and light as you start this journey.

luvofmylif said:

Thanks for all the
Thanks for all the information and advice. I am just so worried about the swallowing problems that I have heard and read about. I can't imagine him never being able to eat again and having a permanent feeding tube. He has already had a 14 hour surgery on BOT and bilateral neck dissections. He is just now getting back to normal but still weak. His swallowing is still not 100%. The good news is that only the right side was positive for cancer. Left side was negative and therefore, they will only radiate the right side in addition to the BOT area. I guess I am worried about his life and his quality of life...is that wrong?

In addition, now I am wondering if we were wrong to have the BOT surgery. It was so awful and not too many other people on this site had the intraoral laser surgery. Wondering if it was unnecessary and will make his problems worse in the long run.

luvofmylif
Can't help with the chemo situation, but did want to voice my opinion that it's the rads he has that will hinder his swallowing. Have him swallow as much as possible and read all the tips on this board all along his journey, and after he finishes "cooking" it should all return. Like all of us beginning the journey, the unknown is so scary! You DO have to trust but "verify", but if you have a good medical team you have to trust them and don't second guess them. If they are experienced in this field, his outcome will be as good as it can be, with his own particular side effects if any! Take courage and don't worry!! (easier said than done, I know!).

MD's Know Best
First off, your MD's know what's best and if you trust them, I'd go with that.

During the second half of my treatment, I had seven weeks of concurrent chemo/rads. Weekly Carboplatin, and daily rads.

Carboplatin is a lesser form of Cisplatin that is used to aid the rads during that treatment period.

But, I did also have nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU prior to that seven week period.

Again, I would communicate your concerns to your MD's, but they are the experts.

As for staying home, that's kind of something that you might want to do the first few days or first week to see how things go.

For me, my wife would usually stay home the days of chemo, but the rest of the weeks during rads, I actually drove myself everyday.

Each of us are different, so it's really hard to say what his needs will be at this point.

Best,
John

phrannie51 said:

Joan.....I have to go along with John and a couple of others
on the chemo thing. Let the Dr.'s decide what drug to use. I never heard anything about Cisplatin making swallowing harder...I just knew that radiation might affect my swallowing, and I was getting Cisplatin concurrently with the rads. I never did have any problem with swallowing during radiation....the only problems I EVER had with my mouth/eating/swallowing was due to the chemo drug 5FU, which came in the last three months months of treatment. Cisplatin can cause neuropathy of the limbs...and I do some some tingling in my fingertips, and my feet...but not anything I can't live with.

Honey, this treatment is hard enough without pulling yourself thru a knothole everyday thinking that so many of the decisions are up to you...trust the Dr.'s...I'm finding ONcologists to be VERY cautious and concerned...they have stake in our treatment and they take it very seriouly.

As for staying home...play it by ear....the third week of radiation is when things can start getting kinda of hairy...Getting to and from radiation was something I truely my husband to help me do. The Ativan everyday before rads made driving impossible for me to get myself home. But see how your husband feels, how he's doing before you decide if and when you want to take your FMLA.

p

Hard to say ..
How far do you live from the treatment center? How healthy is your husband before all of this (any other underlying health issues)? How far are you from home / treatment center? I don't know if you said he had a feeding tube in place or not, I would think so with BOT surgery..but I either missed that info or you did not list it.

As a manager I know there is usually paperwork that has to filled out for FMLA.

My wife "was" a stay-at-home mom, but we have five kids and my treatment center was 109 miles south of where we lived...I made it three weeks into treatments living in an RV on the treatment site (they had RV spaces they provided with just water and electric - no sewer or cable)...at the three week mark I was hospitalized for "wear and tear" and they basically told me they would not continue treatments unless they were assured I had someone with me taking care of me / helping me. I guess you could say I got in trouble. I was trying to be tough, but in all honesty that was not a bright thing for me to do. My wife was under EXTREME distress and pressure bc I kept insisting I was fine and I know she had her hands full with the five kids (4 of which were in school) and just holding down the homefront.

I lost 70lbs in treatment, my neck looked like it was peeling off. Now keep in mind every person is differnt. Two of the posts above John (skiffin) and one other sounded like they did wonderful...I am jealous of that .....Phrannie was correct, and one other I think said so too...the radiation is tough, several weeks into it and I cooked for a solid 6-8 weeks after my last rad. In fact I was "bad" off and could not do anything from the day of my last rad till 4-5 weeks out ....

I hope nothing I said was discouraging or alarming ..just sharing my experience. Remember, each person is different. If I had to guess, I would guess he will need you most from two weeks before treatments end to several weeks after. That's a personal guess based on no medical knowledge, only my personal experience.

Keep us posted...and keep him nourished with calories and protein all you can!!!

Best,

Tim

penny for your thoughts
Hi Joan,

Can’t help with the choice of chemo (I had Erbitux), but I think it was the radiation that left it’s mark on my throat, mouth, tongue and cheeks, the Erbitux went after the outside, torso rash face covered with pimples (juicy pimples, didn’t look bad).

I too, was scared by this site, that I might forget to swallow and have to live by tube for my remaining days. It was not to be, I drank and drank and drank water till I peed like a sprinkler on a timer and never had trouble swallowing. Throughout treatments I manage 1 drink (food supplement) per day, the rest by tube. At 2 weeks after treatments I had the PEG pulled and was done with that.

If you think Erbitux is buying you a free ride, forget it, it might be less onerous but thee is no guarantee. Anyway, my doctor never asked for my advice on treatment types, let him make the decision, he’s the expert.

One thing this post did clear up for me is why I saw so many bad drivers around the hospital. Everybody thinks they can drive while under treatment (I don’t think so, bad idea). After treatments is a time to nap and reflect on the days treatments (no multi-tasking).

Stay healthy and happy (I am).

Best,

Matt

VivianLee5689 said:

Welcome to the freak out club
I am not new to the freak out club either. When my husband was diagnosed with Stage IV BOT cancer I was shocked. I freaked out asked every question that came to mind. I was trying desperately to control something that I have absolutely no control over. I have been slowly, with the help of friends on this site, giving it to God. I can't make my husband well. I have to pray that God will send the right doctors his was and trust that they will do everything they can to cure him. I know it sounds hard, and it is sometimes, but it will give you some peace. I am finally able to sleep some and I am down to crying once a day instead of feeling like I am going to break down over any little thing. I will pray for you.
Vivian

Joan..
Never apologize....this is life changing and we all have been there and truth be told many of us still have a "feak out moment" when we feel and ache or pain or something just does not seem right ....

I think the hardest thing after treatments is the constant "looking over your shoulder" and wondering what next ....truly not easy (even though I never thought I was that type of person) ...

However, many of the longterm'ers on this site have helped keep me calm many a times (as well as prayers) ..I could name so many on here, but I would leave one out and don't want to do that ...

Best,

Tim

CivilMatt said:

you will do fine, really
Joan,

To this day I don’t feel sick and never felt sick, but I had stage IVa SCC, BOT, 1 lymph node, HPV+. I thought (statistically) I would never get cancer and boy was I wrong and since I never ever felt sick, how could I catch it early. I felt a lump on my neck and 3 days later my adventure began. I use to wonder why me, but after a while you learn to accept it and wonder why any of us.

Don’t beat yourself up too much, none of us deserves this c _ _ _! It is a tough journey, but lots of us made it and I am far and away not the bravest one here (Phrannie put me in her pocket).

Best,

Matt

I agree with Matt....
You are going to do FINE!! You're in the worst part of this whole treatment thing, anyway....the beginning, where you are in a foreign land, trying to learn a foreign language in a hurry, and get your footing on where next you're going....it's not unlike being picked up in the middle of the night and dropped off in a foreign country.

I like what our friend Kent says to us when we first get to this site...."Believe....you are going to make it thru this, and come out the other side....so you better just get used to to the idea"...

You are....and you will!!

p

Can't comment
Joan
On which drug to choose, I just decided on erbittex for me over cisplatin due to the chance of renal failure, and permanent hearing loss. We are here for you always.. You should definitely put in the FMLA paperwork. You can ask for sporadic leave, so you can work when you can, and be with John when he needs you....
Jim