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Which drug with chemo

luvofmylif
Posts: 344
Joined: Sep 2012

My husvand will be starting chemo and radiation early next week. We see the drs again tomorrow and he will be fitted for mask. Due to his surgery at BOT, . his swallowing is not 100 percent yet...Probably about 75 percent at this point. I know that cisplatin can increase swallowing problems when combined with the radiation. Cisplatin is the drug the oncologist told us we would receive. My question is this....less swallowing side effects with Cetuximab, therefore, are we able to request the Cetuximab instead of Cisplatin?

I really feel like he will have permanent swallowing problems with Cisplatin based on his current situation and the location of radiation that he will receive.

Thanks for any advice.

Joan

Also, one more question...do you think I pretty much will need to stay home from work during the treatment course of rads and chemo, especially since he will probably be getting a feeding tube. I have FMLA and am able to but just wonder what others have had experience with.

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

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

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

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.

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

Can't answer the question about chemo. My husband had cisplatin and as far as I know, it did not cause swallowing problems.

As for staying home during his treatment - I did not stay home until near the end of rads. Maybe the last two weeks I drove him to his rad appts. I did not go to any of his chemos, he drove himself. I told him I would drive him if he needed me to, but he didn't. For him, chemo ended 2 weeks before rads so it was probably after the last chemo when I started driving him to rads. Chemo was easy, it was the radiation that was really tough. He also had a feeding tube and didn't need any help with it.

luvofmylif
Posts: 344
Joined: Sep 2012

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.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

My husband had davinci robotic surgery on the base of his tongue on Wednesday of last week. He spent 3 days in ICU due to having to stay on the breathing tube because his tongue was swollen outside of his mouth. He is miserable right now, but coming home from the hospital today. We were told the rationale for the BOT surgery was to make it so he didn't have to have so much radiation to that area. More concern with swallowing the more radiation to that area. We haven't had the neck dissection yet. They do not do that surgery at the same time. They want him to heal a couple of weeks first. He did get his feeding tube and is learning how to use that now. We too have chemo and radiation in the future, but we will cross that bridge when we get to it.

Mrs. Sarge
Posts: 202
Joined: Apr 2012

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!).

luvofmylif
Posts: 344
Joined: Sep 2012

Vivian we have almost the same identical situation. My husband had 14 hour surgery to BOT cancer and was in ICU for 3 days and came home after a week on tube feeds. Hang in there it will get better. He just had his last neck dissection on left two weeks ago.

As far as my chemo question I am concerned because Cisplatin is a radiosensitizer and increases the effects of chemo and it increases potential for swallowing problems , so that is why I am losing sleep over this.

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

I think you might be overthinking the cisplatin and swallowing thing a little. It's the radiation that causes swallowing issues. The chemo makes the radiation work better, so you want him to have it. I know at the beginning of treatment you're just so scared and questioning everything. I know I was. But this isn't something to lose sleep over. (easier said than done, I know!)

Is he seeing a speech pathologist? My husband saw one at the hospital a few times during rads and she gave him exercises to help with swallowing. He had a little difficulty near the end of rads but is fine now at about 11 weeks out. Eats whatever he wants.

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

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

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

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

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

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

luvofmylif
Posts: 344
Joined: Sep 2012

Sorry I know I am freaking out...just worried about my husband. Up until 6 weeks ago he was "fine". Healthy, going to gym...now with one phone call your world totally changes and he has stage 4 cancer. I know I am not processing too well and want to have some control over this situation.

I admire all of you from the bottom of my heart and thank you for taking the time to reply. I wish all of you and your loved ones happiness and health.

Trying to stay calm....
Joan

luvofmylif
Posts: 344
Joined: Sep 2012

Sorry I know I am freaking out...just worried about my husband. Up until 6 weeks ago he was "fine". Healthy, going to gym...now with one phone call your world totally changes and he has stage 4 cancer. I know I am not processing too well and want to have some control over this situation.

I admire all of you from the bottom of my heart and thank you for taking the time to reply. I wish all of you and your loved ones happiness and health.

Trying to stay calm....
Joan

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

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

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

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's picture
CivilMatt
Posts: 3093
Joined: May 2012

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

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

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

boardwalkgirl
Posts: 263
Joined: Jun 2012

I had Erbitux in my head when I met with my Oncologist for the first time but she said Cisplatin was the drug of choice for me and I never questioned it after that. I knew she is agressive and that is what I wanted, to kill this crap. I had people drive me on the days of chemo and once I started taking the pain meds, I quit driving but other than that I drove myself. I was home by myself during the day and was fine but everyone is different, you just have to take it day by day. You will get thru this and you are in the right place. The people on this board have so much knowledge and offer so much encouragement, you couldn't be in a better place!

Hard12Find
Posts: 209
Joined: Sep 2012

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

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

I think I would have been ok at home alone during the day but I would not have felt safe driving myself to or from treatment, even though it was only about a block away. Fortunately, my husband is retired. About the middle of tx, I slept soundly about 22 hours a day...had to force myself to get up and eat and take a walk to mailbox. If you can get sporadic leave that sounds like a good answer.

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