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#22203 02-08-2007 03:03 PM
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amycole Offline OP
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Hello. First, I want to say I am very thankful to have been told about this site. I am however a bit electronically challenged (not to mentioned scatterbrained at this point), so I am unsure if I am posting in the right place. My husband is currently undergoing tx at MDACC in Houston for SCC BOT stage IV. We are from Georgia. He was dx in 10/06 and began tx in 11/06. He completed 2 cycles of taxotere, cisplatin and 5FU for a total of 5 days. He was very sick and was hospitalized after both cycles with mucositis and neutropenic temperature. He is now receiving once a week Erbitux (x5) along with IMRT. He has had 4 Erbitux and has completed 12 IMRT. He is starting with the sore throat, sore tongue and mouth sores, but at this point he is still managing to eat. He is using salt and soda solution and Salicept swishes. I am wondering if anyone out there has had this treatment regimen and also any input would be greatly appreciated.


amy cole, caregiver to husband, stage IV BOT, dx 10/06, 2 cyles induction chemo (cisplatin, taxotere, 5FU), 33 IMRT with weekly Erbitux, completed 3/07.
#22204 02-08-2007 03:50 PM
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Hi Amy,
and welcome to the forum. You are very forunate for him being treated at one of the best CCC's in the US.

I didn't have taxotere or Erbitux but I did have IMRT and Cisplatin and it was a very rough treatment protocol. My mouth sores started 2-3 weeks into it and got progressively worse until about 1 month post Tx. The Cisplatin will have the biggest effect on the mouth sores. I was very sick from the Cisplatin as well but other than a couple of emergency visits for rehydration, I was never hospitalized. I came close though, I am sure.

Just remember that everyone responds differently to treatment so his response may be much better than mine or other posters.

Even if he gets a PEG tube he should try to continue to eat and drink orally - it helps a lot down the road to keep those muscles working. I ate and drank the entire time because I didn't get a PEG but not without great difficulty.

He just has to take it one day at a time. I had from fair to horrible days but that is all past now.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#22205 02-08-2007 03:55 PM
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Amy,

Welcome -- I'm glad you found this site. Your husband is being treated at a great cancer center, which is a plus in dealing with this disease. My treatment was different (it was many years ago), so I'm afraid I can't comment directly on his regimen. However, it's good that he's still able to eat. It's really important to keep up the nutrition and hydration (whether by mouth or by tube) to try to minimize the weight loss that can come with radiation.

Please keep posting here to let us know how you're both doing.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#22206 02-08-2007 04:23 PM
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amycole Offline OP
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Thanks for your responses!!! I forgot to mention that the doc's advised Garron to go ahead and have the PEG placed prophylactically before radiation and Erbitux since he suffered with severe mucositis with the induction chemo. He was not excited about the idea, but he did decide to go ahead with PEG placement. It is in place, but he is not using it at this time. It has been stressed to him the importance to keep swallowing, even if he does have to use it. He is also doing mouth, tongue and jaw exercises daily. We are blessed to be able to undergo treatment at MDACC. I cannot say enough good about his care and the hospital, staff, etc., but it is very hard being 1000 miles away from family and friends, neither one working at this time and trying to meet financial obligations back home and rent here in Houston. By the Grace of God, we will get through it. Thanks again!!!


amy cole, caregiver to husband, stage IV BOT, dx 10/06, 2 cyles induction chemo (cisplatin, taxotere, 5FU), 33 IMRT with weekly Erbitux, completed 3/07.
#22207 02-09-2007 02:48 AM
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amycole,

NOT ANOTHER AMY!!!

Ok, I'll get over it.

Amy, I have posted below a response to a question appx a month ago re my recent treatment experiences. I hope this helps.

To, BB and Betty,

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#22208 02-09-2007 03:14 AM
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Hi amycole,

I had something similar with SCC in the tongue. I "luckily" only had to radiation without chemo so my experience is somewhat different.

I can't stress how important the eating and drink are to a neck radiation patient. I could not do it and ended up dumping 7 cans of Ensure a day down a PEG tube for 5 months to feed myself. Then had a long recovery until I could swallow and talk again because the muscles had atrophied in my mouth.

I am now 4 years out and all clear. Most people don't notice any speech iregularities unless I am really tired then I sometimes slur.

Good luck and keep us posted.

Jim


T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.

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