Pam:
I haven't been on this site in awhile so I'm sorry it taken some time to answer your posts.

I had a PEG. I went under a mild anesthesia when it was inserted. It looks like a small plastic disc with a tube coming out of it. I had it in the whole time I was in treatment, but never used it. But as I said before, I was a very unusual patient, most people have trouble swallowing.

I would definitely advise getting a PEG.

Sandy

Pam: I been reading over your posts and have some comments.

First, you will need some assistance during treatment most because of the fatigue. I think I slept 20/24 hours a day. So you'll probably need some help with preparing foods you can eat, and other household chores.

Second: Ethyol is a drug used to help protect your salivary glands, but it has really nasty side effects.

Sandy

Sandy,

Thanks for the tips - I didn't even look up side effects for Ethyol - I had checked out Amifostine earlier, and was going to ask about it (truthfully, I saw "protect salivary glands", and I was all about it).

Have you heard anything on IGF-1 (Insulin-like growth factor)? I'm looking at it now.

Thanks for the tip on probably needing someone to take care of me. My son is in the "of course you'll be fine, the doctors will fix you" frame of mind and probably horrified at the notion of having to tend to me (he does love me, but nurturing is not part of his makeup).

Oh - gotta run - need to finish getting ready for MO appt.

Thx,

- Pam

Pam,
The most important thing of all that you need to know about a PEG tube is that it can save your life - literally! Even with Dana's unusual issues with his, he always has said that without the PEG, he wouldn't be here. At one point it was the only way he could take nutrition and the necessary hydration. His first PEG was the button-type. (Do an "image" search on Google to see exactly what they look like...it's not scary, I promise!) It was installed the same day as his tonsilectomy and radical neck disection. From the very beginning, we maintained it by flushing it with water. This made handling it, maintaining it, and using it later on no big deal. He is diabetic and the edges of the hole never looked quite right. We kept showing it to doctors, and they kept telling us to keep an eye on it. We had decided to be more proactive about getting something done about it - right after his cousin's three day visit. The day she arrived, we went out to dinner. He was having soup, as that was the only thing he could swallow at the time. All of a sudden, he got up and went to the restroom. He's not sure if he got sick because the button popped out, or the button popped out because he got sick, but we wound up in the ER, where the ER doc said he'd never seen anything like it! The docs played "pass the buck" on who was responsible for replacing it. Four days later, the original general surgeon came in and replaced it with the balloon type PEG. Lesson learned: ALWAYS list your MO as your primary doc if you need to be hosptitalized. If we had, he would have been handled differently, and put on the Oncology floor, and had better care. (This info was from the patient advocate at the hospital.) Anyway, a few weeks later, Dana was late taking his liquid nutrition, and his stomach tried to digest the balloon on the inside! Off to the Dr. again to get the balloon deflated, the PEG adjusted, and the balloon re-inflated. By this time, we were laughing with the general surgeon about Dana's unusual PEG tube adventures.
He had it in for several weeks before he used it to supplement the food he was able to take orally. For the last couple of weeks at the end of radiation and a couple of weeks after the end of radiation it was his only was to get nutrition and hydration. At one point, the RO wanted him to consume 3000 calories/day just to maintain his weight. There was NO way he could swallow that much food! He went back to work with it still in, and was able to function just fine. He had it removed after he was able to consume all calories orally for a whole week. We kept a calorie diary to ensure that he was getting enough each day. We lined up the day's bottles of water (8) and made sure he finished them each day. Now that he's past that, it seems like we have nothing to do!
Everyone has different PEG stories-some get them and never use them...But we are huge supporters of using them. Using one doesn't mean that you've failed in some way, it just means that you've got a way to save your life!
Hope your visit to your MO went well. Hang in there!
Diane

Pam,

First off Ethyol and Amifostine are the same thing, Ethyol is the brand name.

The side effects can be nasty and the shots sting a bit. A lot of people get nausea when taking it (I didn�t) the other problem is with skin rashes. I got this near the end of treatment and had to stop the Ethyol for the last two weeks. The rash I got was not very bad at all but the RN and the RO both wanted to stop because they said it could get much worse very quickly.

My Saliva is probably at about 60% and gives me no problem when I am up and active. When I sleep I tend to wake up with dry mouth on my right Side (treatment side).

I went to all liquid diet for two weeks. My last week of treatment and the week after that. I am still on soft foods three weeks out and take the Unsure twice a day to boost my calorie intake.

I was with others at the CCC who had the PEG and they said they worried about it way too much before getting it. After they got it they found it was not as bad as they thought. I was always prepared to get the PEG and was weighed every session. If I dropped more then 5 pounds the agreement I had with the head RN (She was tough as nails) was that we would do the PEG. I also had my wife riding me every meal to get those calories down.

Good luck and get the PEG if you think it will help in the least, Remember, I did not have chemo so I had little nausea.

Kelly

Pam,

This is a VERY SERIOUS disease. Don't take it lightly. Many people die.

First things first. H&N cancer is a different animal. Its substantially less common than breast cancer or prostate cancer, to name just two, and it occurs in a part of the body that is very difficult to treat. Its crucial that you have a medical team (led by an MO you trust) that is highly experienced in treating H&N cancer. I'll say again, your most important decision is which medical team you choose for treatment. In my opinion, the 4 best places in the USA for treating H&N cancer are: John's Hopkins University (Baltimore), M.D. Anderson (Houston, not Orlando), Massachusetts General Hospital (Boston), and Dana Farber Cancer Institute (Boston). They are the best because of the experienced medical teams they have, not because they have fancy equipment or nice corridors or low prices or whatever. If you want to live, talk with staff at these places and find a way to get treated at one of them; these centers have specialized staff who will help you find low-cost accommodation for yourself (and a willing friend) while you are being treated.

Next: Treatment Plan. My expectation is that any of the four places mentioned above will recommend a plan that starts with Induction Chemo (IC) and then moves on to concurrent chemoradiation treatment (CRT). Since I live near Boston, I visited both MGH and DFCI... they both recommended the same treatment plan. Having now had time to research this, I would INSIST on having IC and I strongly recommend that you do the same... if your doctors refuse to offer IC (or if they demur, saying they don't see the benefit), hold their feet to the fire and ask them to show you the studies that say there are better outcomes without IC (they won't be able to do this because they don't exist).

After this, its all details. Which chemical cocktails they'll use and which radiation treatment they'll use. [They use IMRT at both MGH and DFCI. I actually liked the fancy/newer Tomotherapy technology better but, after lots of research, I concluded that a radiation planning team using Tomotherapy needs to have MORE experience than one uses IMRT in order to get as good of an outcome. Further, I scoured the USA and could not find an experienced team using Tomotherapy to treat H&N cancer. JHU uses Tomotherapy only for prostate cancer and their doctors (who are proponents of the Tomotherapy technology) told me I'd be better off with IMRT because I'd have a better medical team for my cancer. The H&N doctors at JHU and MDA (Houston) don't use Tomotherapy; some H&N doctors at MDA (Orlando) do use Tomotherapy but they're not as experienced as my H&N doctors at MGH. So I ended up getting all my treatment at MGH.]

Beyond treatment details, there are many details about how they'll keep the treatment itself from killing you and how they'll keep you reasonably comfortable throughout the process. No matter what they do to make you comfortable, it will be miserable. Focus on getting through all the misery knowing that it does come to an end; you will eventually feel better and enjoy life again... and if you've made the right decisions on the big items (above), you'll probably live a long time. Don't let the small detailed decisions sway you on the big decisions.

Best, Rob

Rob,

Thanks for the info. I just asked you (in a message)some of the questions you've just answered.

Unfortunately, I have very limited financial resources, so would not be able to travel for treatment. I'm glad you had access to one of the best centers. Even the RO I saw did say that there were much bigger and more comprehensive centers than his, and that he would have advised me to go to one of them if he thought it would mean a better outcome.

Luckily, the first thing the local RO I spoke with said was that he would definately recommend Induction chemo (before I had a chance to bring it up).

The surgeon I spoke with a couple of weeks ago said that treatment would be radiation with concurrent chemo, then surgery to remove my lymph nodes (one involved that I know of). The RO said that he hopes to avoid the need for surgery.

Can I ask - did you use a PEG and port? Which parts of treatment were the most difficult for you?

- Pam

Pam,

Yes. Both a port and a PEG. Here's my story:

My first round (out of three) of IC was done on an in-patient basis and without a port because they were eager to get started. So they put an IV in my arm and pumped in the drugs. I had the TPF cocktail: Docetaxol (T), Cisplatin (P), and 5-FU (F). They get the T&P into you in only a few hours but they take several days to get the F into you. The F is very unpleasant (many bad side effects) and its rough on your tissues as well. In particular, because the F was going into my arm (through small veins), it caused really bad marks all along the inside of my arm which made me look like a drug addict for a couple months. Once they finished pumping these chemicals into me, they sent me home. I was feeling sick as a dog after this and, at my first follow-up appointment, I threw up in front of the nurse (fortunately, I got to the sink and didn't make a mess... but I was embarrassed).

Toward the end of the first round (each round was 3 weeks long, and you feel pretty much okay during the 3rd week), the gave me a fancy Dual-Lumin PowerPort. The "Dual-Lumin" aspect means they have two little wells to stick needles into and so can have two different streams of stuff flowing into you at the same time; this can be very handy. The "Power" aspect of this means they can put some things into you under pressure; I'm told this is useful when they want to give you contrast agents for CT or other kind of imaging scans. So the port can save you from getting all kinds of needle sticks (blood tests, imaging exams), not just for the chemo. But the best aspect is that it causes the stuff to flow into a huge vein (not a small one, like in your arm)... so when they gave me the 5-FU later, it had a chance to mix with a larger volume of blood (and get diluted) before coming in contact with the walls of the veins and this means your tissues don't get hurt as much by the 5-FU.

So they started the 2nd round of chemo on an out-patient basis using the port. I got the T&P while still in the hospital (for just a few hours) but they sent me home with a portable pump full of 5-FU that dribbled into me over the next few days. Fortunately, my MO reduced my dose of 5-FU by 20% so this 2nd round was a LOT more tolerable than the 1st round.

At the end of the 2nd round, I was complaining of some pain in my arm and my MO sent me for an ultrasound exam. This exam found I had a blood clot in my arm which they said was caused by the port. So they postponed my 3rd round by 1 day while I got the port removed and they started me on twice daily injections of a blood thinner; I had to give myself these sub-cutanous (not intravenous) injections for the next 3 months. So I was bummed out to lose the port and I was bummed out to have to give myself all these injections.

I forget how we managed the 3rd and final round, it must have been intravenous again and I think it may have been on an out-patient basis. Anyway, we got through it; then they gave me a few weeks break before starting the chemoradiation treatment (CRT).

I pushed to get the PEG installed as soon as they started CRT. I wanted it in before I needed it so that I could practice using it. That turned out to be a good idea because I had become comfortable using it by the time I needed it. There were three ways to use the PEG: (1) in the "bolus" approach you put the liquid into a huge syringe which you attach to the PEG and "push" the liquid into our stomach; the first time I did this too fast and went into a cold sweat - I had to lie down for the next few hours; (2) I soon learned to use a gravity bag; you just hook a tube from the bag to the PEG, place the bag on an IV pole, and fill the bag with liquid... then I would go lie down and let the liquid flow into my stomach. This was the method I used for all my nutrition for the next 3 months. (3) I heard about, but never tried, a 3rd method similar to the gravity bag but it uses a pump rather than rely on gravity.

During Induction Chemo, I lost 25 pounds because I never wanted to eat anything but the biggest problem I had was dehydration. The dehydration would weaken me to the point where I could barely stand up. So I was going to the hospital almost every day to get fluids pumped into me via IV. It was common that they would wheel me into the hospital in a wheelchair (because I was so weakened by the dehydration) but, after 4 hours of getting fluids pumped into me, I would bound out of the hospital feeling filled with energy.

During CRT, the PEG helped me keep hydrated and I never again needed to go to the hospital for hydration. I would typically mix 1 can of the nutritional fluid (called Jevity) with 1 can of water and I would do this 6 times a day. I didn't lose any weight and I never got dehydrated. By comparison to my experiences in IC, this was great. I finished CRT on 26 August and had mostly weaned myself off use of the PEG (and back to eating orally) by 30 September... which is when I returned to work.

I still have the PEG in place, but I haven't used it at all for over a month now. The only reason I haven't had the PEG removed is because I'm now about to undergo surgery (neck dissection) and there's a chance the PEG may be useful during my recovery from the surgery.

So I highly recommend both the port and the PEG. They are very useful.

Hope that helps, Rob

Rob,

Thank you for being so detailed in describing your experience -I feel it helps me prepare myself. I understand everyone has their own experience, and mine may not be the same, but I like knowing how the process went for someone who probably had the same drugs I'll have.

You got dehydrated during IC? Did nausea keep you from being able to get in enough water?

I actually have no appetite whatsoever now, so have been getting used to eating when I'm supposed to eat vs. when I want to eat - here's hoping nausea doesn't keep me from following feeding timelines.

Was your CRT more or less trying than your IC?

- Pam

Hi Pam,

I think your questions are getting harder for me to answer, but I'll try.

I think I had a lot less nausea than the doctors expected me to have. They gave me a bunch of anti-nausea drugs. In fact, one of the hard parts of the entire treatment was keeping track of all the different drugs I was supposed to take (and the schedule for taken them, etc). Its nightmarish. I kept charts on graph paper where I would list all the drugs down one side of the sheet of paper (top to bottom) and I would list the days across the top of the paper (left to right)... then each day I'd go down the list and mark which drugs I'd taken when. Maybe you'll have somebody take care of this for you and just tell you to take this pill or whatever; but I only have myself to rely on, so I needed a system to help me keep track of it all. I was having trouble remembering which drugs are for what purpose; and the doctors would often refer to a drug by its brand name while the pharmacist would label it by its generic name... so I'd keep lists to enable me to translate back and forth. It was all a bit of a zoo because the things that were bothering me (the side effects) would change every few days, so the drugs one needs to take would change as well. The whole purpose of all these drugs and regimens is just to minimize the side effects of the chemo, or the side effects of the other drugs. So you take narcotics to reduce pain but the narcotics cause constipation so you take laxatives to reduce the constipation... but then they tell you to take some mineral (because your blood tests show you are low on this mineral) and that turns out to have its own laxative effect so now you have diarrhea and you figure out you should ease up on the laxative.

Anyway, I don't think it was nausea that kept me from drinking enough water. I'm not really sure what it was. I just didn't want to eat or drink anything. On some days it was a struggle to force myself to get 150 calories (one can of sliced peaches). I had several flavors of Ensure and would feel proud of myself to drink one small bottle (as my entire day's worth of food and drink). It was at these times that I was not only getting dehydrated, but I was shedding weight like mad. [Silver Lining: I'm still 25 pounds lighter and now I fit into a bunch of very nice old clothes that hadn't fit me for ten years.]

The first round of IC was harder than the 2nd and 3rd rounds for two reasons: (1) I was so miserable during the 1st round that my MO dropped the dose of 5-FU by 20% for the other two rounds, and (2) I didn't know what to expect during the 1st round but it taught me a lot... within each round, there was a progression of different symptoms; I learned to recognize them and what I had to do to cope with them.

The chemo kills fast-growing cells. That includes cancer cells but it also includes the cells that line your mucous membranes. You have mucous membranes lining your entire oral cavity, your nasal cavity, your throat, your stomach, your intestines right on down to your anus. Everything is affected. All the cells that line these mucous membranes die and eventually grow back, until they do you are in misery. I developed painful sores inside my mouth, similar to canker sores. I got a fungal infection, known as Thrush, which is common in babies. My tongue and soft palate would swell up and cause me to gag, unless I sat upright... but sitting upright would keep me awake, so I stayed awake for 48 hours (and killed the time on the Internet). The constant gagging was unbearable and would cause me to run to the bathroom to spit up into the sink (eventually I just kept a bowl next to my bed that I could spit into; gross but effective).

Has anyone told you to have your teeth checked!!! Before you start treatment, go directly to your dentist and get a RECENT set of full mouth X-rays. I was lucky that my teeth were in very good condition. I've heard of lots of people who needed to have teeth pulled prior to treatment... some people needed to have ALL their teeth pulled. Get yourself some prescription fluoride toothpaste. Get some ultra-soft tooth brushes. Get yourself some custom-moulded trays. Once you are in treatment, do NOT floss your teeth... carefully and very gently clean them with the ultra-soft toothbrush (careful not to hurt the gums and to avoid those mouth sores). Discard any alcohol-based mouthwash. Once treatment is over, and your gums get back to normal, you can start flossing again. You should also fill the custom-moulded trays with fluoride gel and place this on your teeth daily for a minute or two... for the rest of your life. This is because the radiation will give you dry mouth which will make you prone to dental caries (especially on the roots of the teeth, where they are hard to fill) and the fluoride treatments will help you avoid dental caries. If you don't do this, you'll lose your teeth in the years after treatment. If, after treatment, you do need a tooth pulled (or a crown), you might want to have this done in a hyperbaric chamber; the hyperbaric chamber infuses the region with oxygen during the procedure and, hopefully, prevents osteonecrosis of the jaw (ONJ). What's happening here is that any radiation that hits the bones makes those bones susceptible to "bone death" (osteonecrosis) if they become traumatized; so pulling a tooth after radiation treatment will traumatize the jaw and that might cause ONJ. You don't want ONJ.

The actual radiation treatments were, for me, relaxing (almost pleasant). I'd lie down on the table, they'd place my custom-moulded mask over my face, and I'd just nap for about 30 minutes while the IMRT machine did its thing. The worst part was that the machine made some noises, which would interfere with my ability to listen to the music I had playing in the background. Really nothing to it.

And, compared to the chemo given in IC, the chemo that accompanied the radiation treatments were (in the words of my MO) a "walk in the park". I had so few side effects its hardly worth mentioning.

But the effects of the radiation treatments were cumulative. The first couple weeks weren't so bad, but things got worse as treatment progressed. From the start, I put lotion on my neck 3-4 times every day... at first this seemed pointless, but my nurse was doing a study and I wanted to help out... toward the end it all made sense and I was glad I did this, because the radiation burns on my skin were MUCH milder than some folks had. Still, there were a couple weeks around the end of treatment where the skin on my neck was quite painful and I was applying an astringent to keep the area dry until it healed itself. The insides of my mouth developed sores (sides of tongue, insides of cheeks, gums) and I had swollen soft palate, tongue, esophagus. Thick gobs of mucous would develop in my throat and it seemed impossible to clear it out (although I was desperate to do so). Although I was told that carbonated beverages would be intolerable (due to the mouth sores), I found that Coca-Cola had an almost magical ability to cut through the mucous and temporarily restore a reasonably normal mouth feel. So, to control the pain, I'd load up on narcotics & swish some 'Triple Mix" (aka "Magic Mouthwash")... then, to restore my mouth feel, I'd wash my mouth with Coca-Cola. This would bring some temporary relief and I'd be happy for awhile.

There are other mouth washes that can be useful at different times. (1) Salt Water, (2) Salt Water with Baking Soda, (3) a product called Alkalol, (4) Biotene, (5) Tom's of Maine. Try different things and see what works for you. Your mouth and throat will be changing constantly through this process... the problems (and solutions) you have one day will morph into a different set of problems (and solutions) a couple days later. There is no one answer.

Hope that helps, Rob