Hi everyone. I thought now that I have a treatment plan put together I'd move over to this forum from "Introduce Yourself".

After consulting with the surgeon and RO, we have decided on Trans-oral Laser Microsurgery (TOLM) to take out the right tonsil and tumor -- with real-time pathology for managing the margins. He will also do a right neck dissection to remove the 3 lymph nodes that showed up on the scan, plus anything else that looks suspicious.

This will be followed in 4-6 weeks by either radiotherapy or a radiotherapy/chemotherapy combination. I�ll be getting 60 RAD units if they don�t find escaped cells and achieve negative margins, or 65 units with cisplatin otherwise. If we go the chemo route the RO would give the chemo weekly throughout the radiation term, which seems to be the new conventional wisdom to maximize benefit and minimize side effects. With chemo, the RO is also in favor of a PEG tube, but my surgeon isn't a fan of that because he's seen better swallowing outcomes by not having the tube. That's a conversation for a couple of weeks from now when we have the complete pathology results from surgery.

The follow-up treatments will start about 4 to 6 weeks after surgery, including a week to plan the precise treatment plan, make the mask, etc. This will put the start of RAD in late May, with completion around the first or second week of July. I already have the flouride gel carrier and all dental work taken care of, so we're ready when it's time.

From everything I've read here from others' incredibly informative posts, I'm in for a challenging summer. I'm very lucky to have an super-supportive wife to help me through this, and enough paid time off of work to manage the inevitable absences to recover from surgery (3 weeks planned) and to deal with radiation/chemo (whatever that takes). I'm also lucky to have found this site with all the information and encouragement anyone could ask for. Our daughter, son-in-law and grandson are coming back from California for a mini-vacation starting tomorrow, so we're really looking forward to that.

I'll check back here for advice and comments leading up to my surgery a week from today, and post the results of that as soon as I get back from la-la land. I have to say that I feel pretty good with a solid plan in place and treatments about to begin. Wish me luck!

I will say in my unprofessional opinion that I am pro-tube even though I hated the damn thing...

I have no swallowing issues 1 year out. But I do recall that trying to feed orally would have been extremely difficult pain wise given the rawness of my mouth and throat.

Not to mention taste issues which I don't honestly believe is a indicator to get one but everything but filtered water was horrid around the 4th week of radiation until about 1.5 -3 months post treatment.

Welcome to the family, Peter. Very often, what makes it difficult for a patient to swallow during rads and chemo is not a lack of will, but the pain that is associated with mucositis and the lack of appetite/nausea as a result of the chemo. If the patient's pain threshold is high, then by all means forego the PEG, but if there is doubt at all, then having the PEG to fall back on is a good idea. That's from my caregiving experience.

Hi, Peter
Glad that you have everything all scheduled. I am certain my husband would have gone for the surgery as well had it been available to him.
I'm sure your doc's have already mentioned it, but avoid supplements (especially vitamin E) once you are in radiation. People forget that things that help your body heal from radiation can also help the cancer.
It will be a rough summer, but you will get through it! Remember to say yes to offers of help - it is going to be hard on Deb too, and she might like a day off with friends from time to time.
Best wishes for a wonderful time with your family this week, and keep us posted.
Maria

Welcome Peter.

Sounds you are really up to speed with doing your reading here and getting informed about the process and typical side effects and pretty rough ride through treatment. Feel free to post on your specific issues as they arise. I asked a ton of questions, being one who wants to know every detail and go in eyes wide open.

"but my surgeon isn't a fan of that because he's seen better swallowing outcomes by not having the tube." Not having a tube makes eating a whole lot more painful but there are fewer long term swallow related issues. Seemed like a no brainer to me to give it a try and eating was painful but in the grand scheme of pain, this particular source was not all that much a big deal. You'll get both sides on this topic in plenty.

Well, it has been 22 hours since they wheeled me down for surgery, and based on how I felt when I got back to my room here I can't believe that I'm up to this. But I figure it will make an interesting read for me once the Oxycodone wears off.

Surgery took 4-1/2 hours instead of the scheduled 3. Not sure why. They got good negative margins on the tonsilar tumor, and said the lymph nodes "looked good" - whatever that means. We are supposed to get the pathology results back on that Wednesday. This will be how we determine whether to add Cisplatin while undergoing the radiation treatments.

They are keeping me in here for tonight again, based on wanting to watch one edge of my tonsil incision. And it's probably a good idea because although I'm feeling a lot better than I did last night, it's still a little rough and wobbly. And by staying in here I am also de-stressing Deb, who won't have to worry about a midnight drive to the ER if I start to bleed.

As you guys who've been through this already know, my throat hurts like H-E double-toothpicks when I swallow. But swallowing I'm doing - some apple juice, some gelato, and a couple sips of chicken broth so far. With that progress they've taken me off the saline drip (yay!) and given me more mobility because I now know how to disconnect/reconnect the suction for my neck incision drain tube. So now I can pee without calling for a nurse. That bit of independence feels pretty good. The only downside to all of this is that with the IV drip removed I am having to swallow a lot more to keep hydrated, but I'm getting used to how to do that in a way that minimizes the pain.

I'm gonna' stop here because this is about the extent of my concentration at the moment. But I just wanted to check in with you guys and thank you for all the encouragement. It has made a big difference to me.

Sounds like you are recovering remarkably well!

Im amazed at how well you are doing. You went thru a major surgery and are rid of the IV already. I cant believe you have the concentration to post. Keep up the good work

Woo-hoo! They just pulled the neck drain tube out. Deb is on the way to hear my discharge instructions. Going home in a little over an hour.

One thing I found that works really well for my raw throat: They let me take Tylenol in between doses of oxycodone. I had a slight fever last night and they gave me some. It is in a 20ml suspension -- thick. It coats the wound so that I am only rating pain on that at a 3/10 (before it was an 8 or so). So I think I'll be looking for some of that at the drug store.

Hi, Peter
glad to hear you are doing so well and the margins look good. Now, PAY ATTENTION to the instructions regarding post-op limitations on lifting, activity. The tonsil area in adults has a LOT of vasculalarization, and you don't want to distress Deb(more then she is already) by springing a leak
Maria

Hi again. Today is my 3rd full day at home, and I was down to sleeping only 2 hours (instead of the 4-6 from Monday). I have to say I'm feeling better every day, enough so that I may attempt to walk Steve the Wonderdog tomorrow -- keeping in mind, of course, Maria's very excellent advice not to overdo things. He's a 90 pound Labrador, so Deb will back me up in the event he sees a rabbit that needs chasing...

My eating is still soft stuff - broth, juices, applesauce, ice cream shakes and the like. I tried some Cream of Rice hot cereal yesterday morning but the little granules felt like they were getting stuck everywhere around the wound and it presented higher-than-normal swallowing pain so I gave up on that. As a consequence I've lost about 5 pounds since the surgery last Friday.

The oxycodone continues to keep the overall pain level manageable, but I am running low and face the choice of whether or not to ask the Doc for more on my follow-up visit this Friday. I have been taking 5mg (down from 10 in the hospital) every 4 hours. I think I *might* be able to get by without it, but worry. What do you guys who've been through this kind of surgery think?

Peter,
Welcome to the club nobody in their right mind wants to join! I'm glad you're doing so well. In deciding about asking for more meds, just 'cause you have it doesn't mean you have to take it; it might be good to have some on hand and stretch out the doses as you need it less and less. I have to admit, when I was at that stage, at one point I just said "enough." Early on someone mentioned feeding tubes. During chemo-rad I had one and although I loathed the thing (for no particular reason, it wasn't painful, after I recovered from having it put in, and it wasn't much trouble to maintain although others have had different experiences) there were a few days towards the end of treatment when I was happy to be able to pour a couple of cans of high tech food right into my stomach rather than have to swallow more. I never lost my ability to swallow but at the end of treatment it wasn't fun. Best of luck going forward!

No reason to suffer pain. Ask for refills at a minimum and more if you feel the pain getting any worse. Try protein powders. They have lots of calories and are plenty nutritious too!

Peter, are you dinking enough? Weight loss that fast after getting out of the hospital could be from dehydration. If you had eaten a lot the day before surgery, I could see it. 16 ounces of water weighs about 1 lb. I drink 24 ounces an hour at the gym to keep up with what I lose. Even driving across town in the Dallas summer burns about 32 ounces in a half hour with the air conditioning on.

The protein powder Don mentioned would help you heal a little quicker and perhaps add calories but it could reduce appetite at the same time. If you go that route, find a powder with maltodextrin and the appetite won't take a hit.

Didn't have the same surgery but needed Oxycodone for a couple of weeks after surgery then again during radiotherapy. I had no trouble stopping it. There were no addiction issues.

Pain and stress are contributors to delayed wound healing.

Thanks all for the advice about re-upping the oxycodone prescription. I did just that at the 1-week surgical follow-up visit this morning. However -- and this is good news -- my surgeon recommended trying simultaneous dosing of Ibuprofin at 600mg 3x/day and Tylenoal at 1,000mg 4x/day. He told me these work in different ways and so can be taken together, and the combination has been found to be very effective for throat pain like I'm having post-surgery. I'll let you all know how that goes, as this could be useful for others with similar surgery.

The post-surgical pathology results were mixed. On the positive side the nice clear margins they got on the tonsilar tumor mean they should be able to reduce the radition dosing to that area, and thereby lower the probability of long-term swallowing and dry mouth problems. Also, they down-staged me from N2b to N2a because they only found a single cancerous lymph node -- not the three they thought they saw on the scan. The bad news is they detected evidence of extra-capular extension, meaning my follow-on treatment will involve chemotherapy (Cisplatin, weekly) along with the radiation. But I've gotten this far - why not make it even more interesting, huh? With this change and the advice I've gotten here, I think I'm more amenable to a PEG, especially after the swallowing difficulty I've already had from just the surgery.

The tumor board will meet on my case next Wednesday, after which I will have more specifics on their recommendations for my treatment plan. I'll give an update then with any questions I can think of, but in the mean time thank you all so very much for your support and advice.

Hi Pete,

Just remember to do your swallowing exercises religiously while you are on PEG. Dry swallows too.

Thanks for the update, Pete! The reduced radiation field will help your recovery and long term side-effects!
Maria

Hi Pete,

I had my surgery on Feb 10th and started chemo & rads 4/4 soI am just a little further down the road than you are at this point. I just finished my 4th week of radiation and I highly recommend the PEG tube. I had mine placed while I was in for surgery originally as I needed it while my free flap graft healed. My doctors tell me I am doing great for how far I am with radiation (no sunburn yet but the mouth sure is tender), but I did end up losing 9 lbs last week when I went full time back to the tube. Had to up the volume of Isosource and Liquid Hope (the two liquids I am using), and I am doing much better.

I am having weekly infusions of Cisplatin as well. We skipped last week due to an increase in the tinnitus in my ear. The two main side effects of Cisplatin (so I have been told) are peripheral neuropathy and hearing loss. Since my hearing was compromised just prior to my original surgery (chemical reaction) my doc has been watching for this. So, we took a break and are back for infusion #4 Monday. The good news is that if you have this reaction to Cisplatin, it usually goes away after you are done with the treatment. I figure alive and deaf is better than hearing and well, you know.

I completely agree with Uptown - you need to stay ultra hydrated. Aloe and coconut water help (I get mine at Trader Joes), extra free water (what you drink besides the water you drink with formula), keep swallowing every day. I can only tolerate water now due to the radiation, but I don't stop.I still swallow all my pills with water, but that might be more difficult if more of your throat is treated.

Best wishes to you as your treatment moves forward,

Heather

In other news, I got a call today from my RO with the results of the tumor board discussion. No surprises: Recommending combined chemo and radiotherapy. I have appointments with both the MO and the RO a week from today to go over that and do the test scan. In the meantime I'm reading up to prepare my list of questions, and planning to take advantage of some of the great weather that we're having in the upper midwest to get out and do some fishing. I'll update this thread after my appointment. Thank you all for your advice on PEG and swallowing. That seems to be the next hurdle for me.

Hi Peter!
Hope you are continuing to do well in your healing. Your original post you were asking about a PEG tube and I wanted to agree with Brian that after a while the ability to taste suffers! I developed food aversions and did not want to eat. Fortunately I never was unable to swallow but there were times I did not want to swallow and there were times I was too exhausted to eat. I would vote for a PEG for anyone with OC.

It's three weeks post-surgery now, and I am feeling really pretty good. Not using any kind of pain meds at all. I went trout fishing for most of the day yesterday -- a sign that I could definitely be back at work. The weather is too nice for that though. Why have cancer if you can't abuse your sick leave a little?

I had a post-surgery consult this past Wednesday with the Medical Oncologist and Radiotherapy Oncologist. No real surprises came out of it. Because they found escaped cells from the lymph node, we already knew I'd be having both chemo and radiation as follow-up treatments. It was up in the air whether I would have a PEG tube or not. Because of the chemo-radiation combination though - as well as the decision to irradiate both sides of my neck - the RO was pretty direct about recommending PEG. And all of your advice in these messages made it easy for me to agree to that. I have a consult next Wednesday (May 20) with the team that does that up at UW hospital. My second lifetime surgery, all in less than a month. Guess I just can't get enough of hospitals these days!

During the Wednesday visit they also did a pre-treatment CT scan and fitted me for the mask. At this point it looks like I'll have the PEG tube put in late next week or the following week, with 33 radiation treatments (total 66 units) starting on June 1 and going Monday-Friday until they're finished. On Wednesdays of each week I'll be getting the chemo (cisplatin 40mg). So 6 or 7 of those.

At the consult, both the RO and MO repeated that everyone responds to this kind of treatment differently, and that some folks are able to work right through it. In the worst case I will start feeling bad by the 3rd week of treatment and potentially be unable to work from week 5 until 2 or three weeks after treatments end. So we are anticipating that, but hoping for better. I feel ready for whatever comes.

The docs remain confident of and committed to achieving a cure with these treatments, so that makes me confident in turn. But it also means a miserable couple of months health-wise, with restrictions to stay away from crowds and from sick people and getting to know the UW Hospital parking attendants on a first name basis. Nothing most of you aren't used to already.

I just want to say again how much I appreciate all the advice and answers I've found here. I don't know how I'd be this ready without all of your help.

Peter,
Glad to hear that the treatment is progressing. The chemo and radiation is no walk in the park but should get the job done. You already know to keep your hydration and nutrition up - so that's good. If you can to a bit of a walk every day it will help keep you spirits up - I am convinced that our daily walk with our old dog did my husband a loo of good.
As the radiation hits, you will not have as much energy as you think you should. Be gentle with yourself and get your rest, too!
Best wishes to you and Deb!
Maria

Hi everyone. My follow-up treatment started today with no surprises. So on the chemo I'm one down and six to go, and on rads 1 and 32. It feels great to have this part of the journey started.

The folks doing the chemo are great, just like all of the other ENT and oncology staff I've met here at the U of Wisconsin Carbone Cancer Center. We feel really lucky to be a 20 minute drive from that place. The chemo staff are taking the nausea issue really seriously. Prior to the Cisplatin today they gave me aprepitant (EMEND), dexamethasone (DECADRON) and ondansetron (ZOFRON), and sent me home with prescriptions of aprepitant, ondansetron and prochlorperazine (COMPAZINE). This is all very comforting. I take the aprepitan on chemo day and the following 2 days, and the others as needed. I am hoping that the ondansetron works for me because the prochlorperazine is said to cause drowsiness, which might prevent me from driving myself on chemo days. Hopefully if I need it a night-time dose will be all.

The IMRT folks doing my treatments are the same ones that made the mask. They also made me a mouthpiece to sheild my left-side (opposite of tumor) teeth from radiation. Those have more fillings that the right hand side. They are using a Tomotherapy Accuray machine for the radiation. That's kind of nice because Tomotherapy is a local-area company. Years ago I had a intern programmer working for me who eventually found a job as a product programmer at Tomotherapy. So there is an attractive symmetry to that. As to the treatment itself, not bad. The mask fit a little too tight over my adam's apple so they'll adjust that tomorrow. But I can't say I had any kind of serious claustrophobia, and am sure I can get through these treatments with no worries about that.

Tomorrow is an 8:15AM radiotherapy, followed by a 9AM check-in for PEG insertion, overnight stay, noon discharge on Friday, followed by radiotherapy. So by Saturday I'll be fully underway in this part of the treatment. Many thanks to everyone who posted of their experiences. This let me know ahead of time what to expect and which questions to ask. Can't thank you enough, really. I'll try to post the PEG experience too in case anyone else can learn from what I'm going through.

PJE, dont be surprised if you arent able to drive yourself to treatments. Most of us ended up taking some pretty strong pain meds and driving wasnt an option. My son began driving me after about the 2nd week.

The best thing you can do to help minimize side effects is to concentrate on what is within your control... your intake. This is something I cant stress enough! Every single day you need ta least 2500 calories and 48-64 oz of water. If you can take more in that will only help make this easier. When I went thru this, the others urged me to watch my intake and I failed miserably causing more hospitalizations and suffering than I thought was even possible. Please be a better listener than I was and begin right away with pushing your daily intake to meet the minimum numbers.

Best wishes!!!

Hi Peter, it is good to get rads and chemo under way isn't it. Those meds were exactly what were prescribed for Kris when he had his Cisplatin. Take them as prescribed even if you are not feeling nauseous. Kris had no nausea at all with this cocktail. I hope the next weeks go easy for you. Take Christine's advice and keep your intake up. Even though you will have the PEG installed it is very important to keep swallowing. Those muscles forget how to do the job if you don't. Kris managed to slide a poached egg down every morning and drink at least 1 can of Ensure a day. As the swallowing got tougher, we put the other 7 Ensures down the PEG. To this day, Kris has had no problems with swallowing.
Thinking of you,
Tammy

Glad to here you have finally started. Cisplatin can be quite rough on the body and the mind. I started to forget what I took and when. I resorted to putting a log sheet near the pile of pill bottles. I wrote down what I took and when. Day two and three are the worst. Hopefully the weekly dose is milder for you. Good luck., and keep eating and drinking.

Do you have a cream for your radiated skIn? Don't put it on before the radiation treatment, but bring it with you and put it on after you come out of treatment, paying particular attention to the folds in the skin, that's where the burns and skin breakdown will be the worst. When the skin breaks, cover it with a nonstick dressing to protect it. You will likely feel fatigue setting in after a week or so of radiation. So, be careful if you intend to drive.
Take the anti- nausea medication when you begin to feel queasy, don't wait. You need to the get ahead of the curve. if the pain media give you constipation, talk to your care team about getting some stool softener and Senakot.
Good luck, you will be able to do it. We are all here to help.

Thanks everyone for your advice and words of support. I had the PEG placed this morning and they're keeping me overnight for evaluation. It went pretty smoothly, exept getting the through-the-nose tube to inflate my stomach with air was pretty uncomfortable. In recovery I made the mistake of moving too quickly and that caused enough pain at the placement site to cause me to faint with 30bpm heart rate and 64/30 BP. When I came too I had a bunch of med staff looking after me and they pretty quickly brought things back to a normal range.

Christine - I just had a visit from the RD, and their plan for me is 2,100 calories per day. Probably based on body type/weight. I'll try to beat their plan.

HockeyDad - I am going to take your advice about the list. With the addition of the three anti-nausea things I can't even remember everthing I'm assigned to take now. Appreciate that tip.

Tammy - I'm going to try to continue to take nutrition and water orally as long as I can in order to address the very problems you advised me of. Swallowing is one of those important life skills, isn't i? ;0)

Gloria - I am a strong believer in staying ahead of the pain curve with meds, and extending that to nausea makes a lot of sense too. Thanks.

It really *does* feel good to be fully on my way with this. And you guys are a lifeline. So glad to have found this!

I am hoping and praying for all the best for you. Sounds like you are keeping pn top of all those issues of nutrition and meds and all. Take care. Denise

Glad things are moving along - hope that the PEG placement is the last piece of drama!
Maria

Well, so this is what Cispaltin side effects feel like. I have to tell you it is not at all enjoyable. Even with the 3 anti-nausea meds they gave me it is a challenge to find enough motivation to eat. To compound things I have a lot of pain at the insertion point - enough so that just trying to sit up from lying down is a major undertaking, and one wrong move hurts enough to get Steve The Wonderdog running over to see what's wrong when I yell.

I'm curious from others out there who've had a PEG - what was your experience with level of pain and length of time for that to abate? I haven't been able to get out of my PJ's today. For the time being I'm going to fall back on the Oxycodone instead of continuing with the Tylenol/Advil regimen recommended by my oral surgeon.

It usually takes a few days until you begin to feel better after getting a feeding tube. The first day up to 3 days most patients are in considerable pain. After the 3rd day the pain should gradually decrease. Take whatever you need to in order to make it thru the next few days.

I hope you feel better soon!



PS... On chemo days push to drink extra water to help flush the poison out of your body.

Hi again. Just checking in. Today was 2/7 for me on chemotherapy treatments, and 6/33 on radiotherapy. I am beginning to get in the groove. If last week's pattern holds I'll have a good day tomorrow and start to fade on Friday from the Cisplatin. If things get really bad you might have to endure a whiney post from me on Saturday. But since the radiation side effects haven't started in earnest yet, fishing is a Sunday possibility. And with that prospect I think I'll be able to just man up and deal with it. ;-)

I was having a heck of a time with pain at the PEG insertion point and using Oxy to control that, but forgot about the constipation side effect and got behind on that. With the pain driving me nuts I asked to see the Nurse Practicioner today (a day early), and she removed the 3 anchoring buttons surrounding the tube insertion point. Immediate bliss and relief! She said this is the most common source of post-procedure pain and that the nurses call them - get this - "pain buttons". And with a wink she said they could only tell me that after the procedure. Who knew there was so much humor in the medical profession?

I'll sign off here as I still need to find a way to get more water in, this being chemo day. The creeping nausea is wearing on my motivation to swallow. Thankfully the med staff at UW-CCC and the folks here have prepared me to deal with that.

You are doing so well. I love your sly sense of humour.

Pain buttons!

Keep us posted.

Hi again. Just checking in again now that I'm almost through treatments. All the chemo is done (finished yesterday), and the RADS will be done Friday.

It has been quite a trip. The radiation side effects kicked in a couple weeks back and I had to cut back quite a bit at work. Finally last week I gave up on that entirely and don't plan a return until two weeks post-treatment. The fatigue was just getting too much. Also due to RADS I've been doing tube feeding exclusively for almost 2 weeks. Thanks to everyone who helped me reach the decision to have the PEG inserted before getting into these treatments -- I can't imagine how I could have withstood that otherwise.

On the activity front, I guess I've just been - as a dog-owning friend put it - "sitting in my cave and licking my paws". Not that anything has happened to me that I haven't read about on others' posts here. I've grown a new appreciation though for how tough this is and how strong you all are. Thanks for that bit of inspiration.

Now that I'm on the cusp of being post-treatment, I have tried to start mentally transitioning myself to play the waiting game again. Treatments are pretty much a full-time job, and as strange as it sounds I had lost sight of being a cancer patient and started to think of myself as being a cancer treatment patient. Part of this was being focused on the one-day-at-a-time nature of just getting through things, and part to not getting attached to things outside my control. So now I'm facing a reversal of that starting this weekend which may take some getting used-to. Not that I will mind at all being through treatments!

That mental transition is a significant one but you are well prepared for it. The relief of not having to go in was surprisingly powerful for me. I thought I would kind of miss the supportive staff at the clinic but just felt liberated.

Good luck with the next two weeks. I had no chemo and less extensive rads than some but I can say that at Day 6 after treatment I woke up feeling a lot better.

PJE, it sounds like you are doing great! We aren't any tougher than you, now you have this under your belt.

Best wishes for some smooth sailing.

Quick update: They have been giving me 2 liter saline infusions through a IV to keep me hydrated. Today - the final day of rads - they found I had a low grade fever on checking in for the saline. Combined with remarkably low white blood cell counts from Monday's lab work they are taking it all quite seriously. What this means in a practical sense is that after I finished up the last radiation treatment this afternoon I was admitted as an inpatient. Preliminary diagnosis: neutrophyllic infection. This means they don't know the precise location of the infection and are goin to use the next couple of days to isolate the source and develop a targeted treatment plan. Meanwhile they have me on a general purpose IV anti-bacterial drug, plus one to address the "flush" that has developed alongside the mucocitis in my throat. Plus my old friend oxycodone.

There is a certain amount of symmetry with this turn of events because my treatments kicked off with a 2-night hospital stay to recover sufficiently from the tonsillectomy. Lookin' like another 2-night stay to get this figured out.

Many rivers to cross, huh?

Good luck with this Peter. You are so remarkably lucid and analytical for someone who is in the nadir of treatment.May the oxycodone keep the pain at bay and the side effects wear off as soon as possible.

Wishing you wellxxx