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treatment plan

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi everyone. I spoke with the rad oncologist today and he recommended rads of the mucosa (all my throat because of unknown primary) and the site where they found nodes in my neck and the other side of my neck where there was no evidence of disease.

I addition he's recommending 3 courses of chemo (beginning of rads, middle, and end - not sure yet what poison). And he wants me to gain weight. I also got a call for an appointment for a PEG. Oh, I also have to see the dentist ASAP. Ugh.

So all the things I wanted to avoid are going to happen. The slight bit of bright news is that I tested HPV+ which is a positive prognostic factor (extrapolating the data).

All this is supposed to start probably mid-to late February. I'll keep you posted.

Best,

Mick

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Mick, It’s a long journey but you are a very positive and strong guy, I know you will do well. There may be times when you feel so down that it will be hard to get back up, but remember we will all be here for you. At this time you will also find out just how much your wife really means to you, my wife was my rock and kept picking me up every time I fell. Please continue to keep us posted as you go through your treatment.
In my own humble way and out of respect you will be in my prayers

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Hi Mick,

We've passed in a few other forum topics lately. Not sure if you've seen my older posts, but I basically just finished most of the same treatment regime' that you seem to be starting.

Stage III SCC HPV derived tonsil (primary site) cancer with one node in my neck as a secondary site. I was diagnosed last January 2, 2009 and finished my regime; around the 18th of June 2009.

I had nine weeks (three week cycles) of Taxotere, Cisplaten and 5FU (the 5FU was via a pump worn for 4 days). The Chemo was all administered on Monday, the 5FU until Friday morning then the pump was removed, port flushed and Neulasta the following Monday after hydration, then two weeks of recover.

After that I had seven weeks where I had Carboplaten on Mondays followed by an injection of Amifostine in my abdomin just prior to 15 minutes of radiation. The Amifostine injections and radiation was everyday M-F for 35 exposures.

I also had both sides of my throat and neck area treated, a lower dose on the non-cancer side of my throat.

Other than having a small amount of dental work performed prior to the radiation, and routine cleaning and check-ups after that's all for dental work at present.

I do have a port, but as I was carrying extra weight to start, I didn't need a PEG, and honestly it wasn't a problem for me. During the worse portion of radiation (the last few weeks and the next few weeks after). I pretty much survived on Ensure Plus, water and meds to numb the throat while drinking.

Hopefully your treatment will go as smooth as can be.

God Bless and Take Care,
John

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi John. Thanks for that reply. I will most likely get the PEG but I dread having it there. Hopefully, I will love it being there when I need it - perspective is everything in my business (I'm a marriage/family therapist).

I'm curious about the ensure and other things people have used for nutrition. Are these things recommended by the onco team or do you find them on your own? Are there organic types? I'll do some 'net surfing on the subject, but figure many here have been down similar roads.

Thanks for the continued support. And Hondo, I might be a non-believer but that does not mean I do not appreciate the power of prayer, so if you have them to give, I am grateful to be in your thoughts and I do hold you and all of us here in mine.

Warmly,

Mick

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Mick,

Concerning the Ensure Plus, my chemo center actually had refrigerated drinks and snacks in the center. I can only speak of my particular center, but it was great. Recliners, small personal TV for each chair, warm blankets many volunteers and awesome staff.

The Ensure Plus was in the fridge, and I purchased them at my local grocer as well.

When I couldn't eat much of anything because it was too painful, I noticed the calorie, mineral, and vitamin content of each can container of Ensure Plus. Each had something like 350 calories, 16+ minerals and vitamins... There was nothing that I could eat in small amounts that offered me anything close to that many calories, let alone all of those vitamins and minerals.

So I would drink 2 - 4 of those each day trying to keep my strength up and as to not lose too much weight. I still lost 45#, but I think they helped me a lot with strength and fatigue.

There were very few days that I just didn't do something... I'd walk on the treadmill, ride my bike, walk around the block.

Hopefully, you'll find something that can help you during your treatment as well.

If I can offer you any information from my own personal experience please feel free to ask.

John

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

You will always be in my thought and prayers my friend that you can bank on it

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Mick,

Good luck finding nutrition drinks/supplements you can use. Since I found out I'm diabetic when I got my cancer diagnosis, I was on the hunt for sugar and corn syrup-free supplements. At our local health food store (kind of small) and health food sections of grocery stores, I could not find any complete nutrition supplement/meal replacement drinks/powders that weren't also full of anti-oxidants (on the forbidden list per my doctor). Since I was not feeling well at the time I needed the supplements, I settled on a diabetic Ensure-type beverage called Enterex.

You're not going to like the ingredient list on the "standard" PEG feeding formula I have been prescribed (first four ingredients are water, corn syrup, soy protein isolate and canola oil). These are followed by ten lines of "less than 1% of other ingredients" (some nutrients, some additives for preservation and microbial inhibitors). If you let your nutritionist/dr. know of your concerns, there are other formulas and options out there. My nutritionist was straightforward, and said if my diabetes (not severe) becomes more of an issue, we'll address the possibility of changing diabetes meds, not formula; main concern is getting in the calories and nutrients; diabetes is secondary. So much for defeating diabetes at the same time I'm getting rid of cancer. I was sugar-free - argh!

We also have a lady who posts here (don't remember the name) who has a website devoted to recipes for home-prepared foods to use in a tube. I thought it sounded interesting (and healthy), but am too nervous about putting anything other than recommended formula and water in my tube.

Good luck - would love to hear if you come up with some "good" stuff.

- Pam

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Mick,

You will probably be introduced to a nutritionist immediately prior to or following insertion of your tube. In your case, with the concerns you have indicated in other posts, you might want to hook up with that person earlier rather than later: it is easy enough to ask OncoMan to set up an appointment with the person. I have a feeling that this nutritionist will be pleased to be working with a patient who has your apparent concern and knowledge in this area.

I was out of town, so to speak, when they put my PEG tube in, so I cannot tell you about the pain factor, but I can tell you that I have had them fall out and subsequently replaced and no anesthesia was required (obviously, when they first insert it, they have to make a hole, and as is common when someone makes a new hole in your body, there is the possibility of pain if they skimp on the ether).

Ensure is certainly not the only product available for the tube. In my case, I use a product called Jevity. Since I am not a nutrition expert, I cannot say much about issues like sugar (it does contain corn syrup solids, whatever that means), but you can talk to your nutritionist about that and any other concerns you might have if that is the one chosen.

As you may know from your scanning of this board, some folks come up with what they consider healthy choices on their own. Again, I would consult with the nutritionist in this regard, and would also advise OncoMan of my choices prior to chemo, as these choices might accidentally have an averse effect on the chemotherapy's success.

You have been an active member of this board for long enough, Mick, to know that pre-rad dental treatment is critical and may ultimately result in saving your oral ivories. I would suggest that you talk to your dentist, while there, about the fluroid tray option. I hear only good things about this option and will probably bring it up with my dentist when he next he coaxes me into his lair :).

Otherwise, I would not go into this expecting the worst. When we do that, it generally befalls us, it seems, and I think this is why our doctors are reticent to give us worst-possible case scenarios, except as required by law.

To quote a time-honored axiom of this joint, each of us is different, and each of us reacts to treatment in a personal manner. You are much more educated about cancer than I was headed into it, if for no other reason than I was not aware of this site. (It also happens that I had a much more laissez faire attitude, I suppose: it is what it is, I'm paying these guys enormous quantities to know what they are doing, etc.)

While this is trepidating, I know, there must also be a sense it is finally time to rock n roll.

Best wishes to you and your family, Mick.

Take care,

Joe

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Hi Mick

Sounds like you are being given the fairly common protocol of treatment which is a good thing because it seems to work! I had the same as proposed, rads to the other side is a precaution in case of spread and 3 cylcles of chemo is the old standard with many places now going to one week on and one week off. I think you would be splitting hairs on effectiveness here. The dentist is routine and hopefully a dentist schooled in cancer. I had to go for three of the most thourough cleanings I ever had as my dentist had authored a pamphlet on oral cancer and dentistry. The peg insertion was the most unpleasant experience I had through all of this but it is soon over. I think being overweight makes it more difficult and painful and I was a bit on the heavy side.

Get to know your nurses. I found chocolate and nuts to work wonders with them. They have access to all kinds of samples from creams and ointments to nutritional supplements. They probably have a stash of some supplement which I would ask to sample and see how you like it. I also was on Jevity and found it to work well. Jevity comes in differnt caloric profiles 1.2, 1.5 etc. to tailor a diet to your specifics. It also has less sugar than your typical OTC carnation mix. Oh, this stuff is expensive and insurance in most cases will pick up the tab, might take some leg work on the phone but well worth it.

My one suggestion is to go to a home center and buy some large multi drawer storage unit where you can have a drawer for your meds, gauze, syringes, non meds and antispectics and creams, etc. If you have young children buy none that locks. I got the drawers to keep the cat and dog away from my sterile stuff. You will do well.

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Mick, other than the Doc's found my primary, you will be undergoing everything I did. (as have so many others here) Dig in and do what they say. They will take you through this as will all of us here. You can do this. Keep us posted and good luck.

Mike

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Thanks for the reply. How bad was the swallowing? Did you use the PEG? How soon did you recover?

You know I'll be keeping you posted. Thanks for the best wishes.

Best,

Mick

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hey Mick, the swallowing for me was worst towards the end of my rads. My chemo and radiation were done at the same time. Chemo started on a Monday, rads next day. (3 chemos, 33 rads, chemos all day Monday and then pump for 96 hours)) I thought chemo was the pits. Round one, not so bad, but you are the healthiest then. Round 2, had a toxic reaction and was miserable. Nausea and throwing up. Spent 3 days the following week taking hydration. Round 3 adjusted a bit, bad but not impossible. Had about 2 weeks where I couldn't talk. No eating by end of round 2, just sipping water to keep using my swallowing muscles. (whatever you do don't lose your swallow) PEG and port put in 2 days before chemo started. Used PEG alot, just wasn't smart enough to start using it sooner than I did. By 2 weeks after last rad and chemo the sun came out again. I started eating soup and scrambled eggs and trying as much stuff as I thought I could. PEG removed just before 4 weeks after last rad. Pushed the Doc a bit as I hated that damn thing. Couldn't have made it without it but really didn't like it. Lost 35 pounds total, have 15 back now 3 months post. You'll do fine. It's just one of those things that you have to put your head down and bull through it. We'll be here for you. Once again, good luck, you can do this.

Mike

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Joe: What's that axe in your photo. Kinda like a Martin body, but not sure. My favorite guitar is my Taylor 614ce, oh and my Tele - LOVE THAT AXE!!!

I connected with a nutritionist back in November when it was pretty certain something bad was going on, and that was the beginning of my cancer education. By the time I had my diagnosis I was already reading nutrition literature and making lifestyle changes to support a strong immune system. The Drs think I'll "do fine" with treatment because I am "very strong". It's hard to make sense of that because I am a kind of small guy with just ordinary muscles. I guess it's my will that makes me strong?

(BTW, your post, informative and supportive, is also, as usual, a pleasure to read. You have a gift of phrasing)

Dentist next week. PEG the week after that. Treatment in mid-late Feb. I'm on the path and ready to Rock!

Best,

Mick

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Good attitude, Mick. PEG, you say- but, Port, also? Got both before the fun began. They can take care of both with one Op, and the Port is the lesser the nuissance to live with.

Good to hear about your nutrition beginning so soon. Again- formula is the best tube feeding, and the 4.0 is the best route, if you can tolerate it. Even with, I lost some 17+% of my body weight. Should get that lined-up beforehand. Comes in 24-can cases for $45, in the US midwest. Place I got hooked-up to provided me with the big syringes for the feedings at cost-level, and everything. Even delivered, when the morph made it so I couldn't pick-up at their place. Get things in place, Mick- will make it all so much easier. Wish I had been as upbeat as you, going-in, Mick. You'll be okay. Talk to us, and

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

Hang in there man. We are about to start the same thing. I have read a lot more posts and gathered a bit more info on all this and i agree with Joe. We all react differently, and that is the only way I'm goin into this. I get my teeth pulled tomorrow--- Do I feel like it? NO!!! But I too am ready to rock and roll and get on with my life. I see a general surgeon Tuesday about the peg and the port and my rad onco on Thursday. Oh yea chemo doc monday. I don't know what the treatments are going to be yet. I read about people that never missed a full day's work and some that it just tore down. I choose the first of these possibilities and will keep my mind focused on that. So hang in there and know that my thoughts are with you!!!!

Steve

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