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Joined: Mar 2007
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Hello. My name is Walt. My wife's name is Pat. She is my sweetheart, soulmate, love of my life - the list goes on. Here's what happened to us.

We came down to Florida in early December 2006 to visit some of our kids. Between us we have five kids and four grandkids. Three of our kids and three of our grandkids live in Florida. And, as we've done for a few years we took an extended vacation so we could see them during the holidays and early new year.

Shortly after we arrived Pat mentioned a lump on the right side of her neck. It didn't hurt and she had no symptoms - no fever, aches, pains, etc. Since she wasn't feeling bad we decided to watch this lump for a couple of weeks and if it didn't improve we'd get it checked out.

About three weeks later (right after the new year) we went to a local General Practitioner who prescribed and antibiotic and said to come back in ten days. Ten days later the lump in her throat was unchanged and was actually somewhat larger. Next we were referred to a surgeon for a biopsy. He said this was an Ear/Nose?Throat issue and referred us to an ENT. The ENT order a CT scan to see if the lump was a salivary gland or a lymph node. At the time we first saw the ENT the lump in Pat's throat had grown to the size of a golfball. The CT scan showed it was an enlarged lymph node on the right side of her neck just below the ear. Next he did a needle aspiration biopsy. This came back as "inconclusive". Next he removed the lymph node. The result came back as a non small cell metastatic carcinoma. Next the ENT looked down her throat and found a squamous cell carcinoma about 2.5 cm at the base of the tongue on the right side.

Next we saw a Radiation Oncologist who said this wasstage 4a. (Actaul diagnosis is T1N2bMo)The Rad Onc said he wanted to do IMRT x 35 treatments over 7 weeks. We next saw the Medical Oncologist who said he wanted to do Erbitux once a week for seven weeks. Subsequent PET scan showed no further metastasis.

OK, fast forward. Pat had her first Erbitux induction last Monday. The treatment went fine but about four hours after we got back home she had a very severe headache which was followed by severe nausea and then vomiting. She was admitted to hospital the next morning with dehydration/fatigue, etc. Med Onc said he'd never seen a reaction like this before - go figure!! While in hospital they installed a PEG tube in preparation for radiation treatment. Pat had her second Erbitux treatment two days ago and it went fine - no issues, no side effects. We had the setup CT scan in preparation radiation today. Radiation starts next Monday.

Even though this is a long posting I've only given you the condensed version. But, I feel certain that many of you can relate from your own personal experience and you know all about the tears, the shock, the denial, etc.

Anyway, here it is mid March and we still haven't headed back up north to our home - so much for vacation huh? I'm not complaining because the kids are here and they are very helpful and supportive. It was meant to be that we discovered this here as opposed to back home.

So, that's my introduction. Pat and I are determined to trust the Lord no matter what. I just wish I could take this awful thing and bear it for her. We have a large number of folks praying for Pat and I and we can see the difference that makes. Anyway, hello to everyone. I'll keep you posted.


------------
CG to my wife Pat. SCC base of tongue. Dx 2/07 - T2N3bM0. Single lymph node dissection 2/07. Tx started 3/07. Expecting 8 rounds of Erbitux and 30 to 35 rounds IMRT radiation when complete. Trusting the Lord no matter what.
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Hi Walt,
I'm sorry you, your wife and family are going through this. I am just starting the experience tomorrow when my husband (Kyle51-member name)goes in to have part of his tongue removed. They will be checking his lymph nodes as well. We are praying it has not moved there yet. I too wish I could take some of the fear away that my husband must be feeling. He read bedtime stories to our 2 year old daughter tonight and I cried in the other room. It's hard. We also have a 7 month old son. This is a time we should be enjoying our family not dealing with this. I'm sure you are a big comfort to your wife. You obviously love her dearly and I'm sure she feels that. Good luck to you.

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Walt,

If I didn't know better I would think you were describing to a T what I went through starting in April of 2006.

I will send you a private e-mail message rather than take up a lot of space here on the site.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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Walt,

Below I am reposting a post I made several months ago describing what I went through during the rad Tx. As you can see I had almost the identical Dx and Tx. Please note I had concurrent chemo but I did not have a Peg. I hope this helps prepare you 2 for what may lie ahead.

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.
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Hi Walt,

Welcome to the site, but sorry to hear about your wife.

Since David has covered a great deal of information I will just stress one point. Nutrition is the single most important thing to watch during the treatments. Be sure to ask your wife's doctors what they recommend for a daily calorie intake during her treatment and stick to it. She will need the energy especially if she has trouble with nausea and vomitting. If that is the case, extra fluids are required. This is all important because if your wife gets too low on energy because of malnutrition they may have to stop treatment and start over again. You don't want this to happen. It is bad enough going straight through.

Take care and fight hard.

Jim


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

We all take the treatment differently. In my case, the treatment was not nearly as bad as others.

Some of the things I did which may have helped, besided being in good health prior to starting treatment: 1) quickly deciding on a simple mostly liquid diet to get the needed daily calories (extremely important to get those calories - when it was all over, I lost maybe 3-5 lbs and without a PEG), 2) being open to discussing every problem with my RO and MO (and/or nurses) in order to get a medication for side effects - and trying different medications if the first one or two don't work so well (my wife was very instrumental in this and even recommended some of the medications), 3) doing some form of regular exercise daily throughout treatment (however, nothing too calorie consuming), 4) doing some preventative things daily (e.g., applying radiation cream on my neck and using salt/baking soda mouthwash).

For me the Erbitux caused severe pimples on my face and upper torso. After an initial attempt at topical treatment, I ended up taking oral antibiotics and steroids which cleared them up significantly. The Erbitux also caused some severe radiation burns on my neck - I had a small amount of radiation burn during treatment, but they really blossomed just after treatment ended, clearing up after a short time.

At 4-1/2 months out of treatment, my taste buds have recovered quite a bit (although they are not the same as before treatment) and I just got back some semblence of an appetite (I'm even eating small snacks during the day). I'm making some small amount of saliva (not nearly enough, but at least a little), and I feel very good physically.

My wife was critically important in helping me, and no amount of words can describe her love, patience, and dedication in making sure I got through all this.

Good luck and best wishes,

Chris


SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
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I'm very thankful for the responses, suggestions and encouragement. What many of you have been saying coincides with what I've read and heard from others. So, many many heartfelt thanks to you from my wife and I.

The dieticiam has suggested Jevity 1.5 at 4.5 cans per day. This would give Pat about 1700 calories per day. He also stressed lots of water.

I've been cleaning her PEG tube twice each day using about 60 cc of water. This is giving me good practice and I'm pretty comfortable with this process. Pat doesn't want any part of it as is more than willing to let me do this. I've been changing the dressing each day since she had it installed last Thursday. Yesterday I was able to get nurse in the RO's offic eto get us a stopcock valve. This really helps and has eliminated the small amount of leakage she had been having. There's still a little drainage from the tube site itself but this is alleviated with some drain sponges and some tape. Pat is still having a lot of discomfort, bloating and generally distended stomach. She's been a little constipated but has taken milk of magnesia each day. Anyone experience this? Any suggestions? Once agin, my thanks to all. You've been a blessingto us.


------------
CG to my wife Pat. SCC base of tongue. Dx 2/07 - T2N3bM0. Single lymph node dissection 2/07. Tx started 3/07. Expecting 8 rounds of Erbitux and 30 to 35 rounds IMRT radiation when complete. Trusting the Lord no matter what.
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Walt

Marvin had about the same symptoms that your wife did and we did the same route. He is stage 4a also on the bottom of his tongue. We are starting our 4th week of rad and chemo. He had a really tough four days last week. He was constipated aslo and was even having trouble urinating. I didnt find this out until we were at the chemo treatment this tuesday and he started to sweat. He also had trouble keeping any cans of boost down. They gave him extra fluids with his chemo and had him take milk of magnesia every 3-1/2 hrs until something happened. It took about 14 hrs before we got any results. We felt like having a party we were so happy. Since then he has been able to keep the boost down and I have started putting more water down the tube also. I was putting things in to fast and found that it takes about 10 mins for 8 oz of boost to go in. Marvin has to have 7 cans to maintane his weight. That has been a challenge with having to drive 60 miles for rad everyday and then they run behind but we have managed this week to get in 7 each day. We too have lots of people praying for marvin which is a great comfort. Even though we don't know why Marvin has to go though this we know it is in Gods hands and at some point we may find the answer as to why. You will find a wealth of information from all on this board. It has helped me out lots of time. My prayer list gets longer everday with the people we meet here and where we go for treatment.


Barb
CG for Marvin.
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blc,

Get the Carnation VHC. It will drastically cut down the feeding quantity which equals valuable time gained.


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.
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David

I asked cvs about it they didnt seem to know of it. Said they havent ordered it. So I will go to Walgreens and check with them. Thanks


Barb
CG for Marvin.
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