So - I had a partial glossectomy and neck dissection on March 25th, the margin wasn't what was expected so they recommended radiation treatment. 33 treatments in total, and I was forewarned that it would be uncomfortable, and towards the end very difficult.

But I am really 'down' now, I am finding it very uncomfortable - my mouth has lots of sores, my tongue is a mess and I feel like I have strep throat. I am only 1/3 of the way there and will be 'whining' to my oncologist tomorrow but I am just not sure how I will get through until July 4th. I was using the fluoride trays at night, but found it was burning my mouth so badly, the dentist has told me that I can discontinue.

I am rinsing my mouth out hourly and carry flat club soda around with me to hydrate my mouth. Am going to try acupuncture... I wish I could be one of the positive Penny type people but right now I feel really bummed out and am wondering why I even signed up for this. It is to reduce the chance of cancer recurrence, and I get the benefits but...

I know for many of you that have faced far more trying circumstances, I must seem like quite a whiner, but I was never blessed with an amazing pain tolerance and this is very frustrating for me!

Plus my energy level is just the pits - I am not working, but have no stamina or endurance to do things I enjoy doing or things that I should do.

Hi LWP,
Bums me out to know how how's and in pain you are. I did not have much pain from my radiation treatments. It was not pleasant, but definitely not like others, or what you seem to be experiencing. However I was in excruciating pain in 2011 from my first bout with this ugly cancer. I also do know a lot about being down. I was probably clinically depressed for weeks...self diagnosed. But staring into space in front of a window for weeks, and feeling numb was, I think, a good sign. Had horrible anxiety and finally took meds for that to sleep at night. You asked how you get through it all...I don't know...somehow we do...we just do. Expressing myself and reading here at the forum made an incredible difference for me. I actually read more than shared. It was my lifeline to sanity. Everyone here will stick by your side and talk you through it. Others will have many ideas on how to deal with the pain. Some people watched movies, others read, others walked. Me?...I withdrew and wore leggings with my sons flannel shirts everyday...hey that's what worked for me. And of course I'm sure you will be talking to your dr about pain medication.
Please keep on expressing yourself here and ask any questions that pop into your mind. No one will think you are a whiner. Please don't ever worry about that.
Best of luck to you. ~

It is totally normal to feel this way. There were many times I wanted to quit. I felt like I couldn't endure Amy more treatment. But day after day went by and then it was my last day. You can make it through. You can do it. I promise. If things get really bad they can stop your treatment for a few days. It's good to vent and here you have people that understand what you are going through.

Hi LWP
I had similar to you dissection with radiation I used a water pick with club soda daily it seemed to keep my mouth cleaner and not as many sores, I see your a Canuck as well I found that Timmy icecaps really soothed plus gave 540 calories to help with calorie intake I know high on sugar but calories are calories, hope you start feeling better my wife is a little horsey as well here on the island of van.
Best wishes ken

Ask for a prescription for magic mouthwash. It will help numb the mouth sores for a little while, long enough to make eating easier. The best thing you can do for yourself to to control your intake. Every single day take in a minimum of 2500+ calories and 48-64+ oz of water. You can ask your doc for a prescription to get hydrated a couple times per week in the chemo lab. This will help you avoid dehydration and feeling even worse.

I wish I could say it will get easier but unfortunately it will get progressively harder. The worst will be the first 2/3 weeks after you have finished rads.

Check out some other posts about acupuncture. Several members have had mixed results. It might be wise to wait until you have begun to recover before you try it.

You are not a whiner! You are among friends who have been there and understand what you are going thru. Its not easy! Try taking it day by day without thinking too far into the future. The "what if's" will make the whole thing even harder.

Ask your doc or dentist for a different flouride prescription. You should push to use the flouride trays every single day. Radiation is very hard on the teeth, you want to try to avoid bigger issues down the road.

Hang in there!!!

LWP,

Sorry that you are experiencing these side effects but do try and keep this in perspective. Your docs feel this is necessary to kill whatever cancer cells remain and prevent a recurrence. This cancer has proven to be difficult to eliminate so unfortunately the current treatment is intentionally designed to deliver maximum force.

Remember in the grand life picture this period is a mere speed bump so lets get mad and show this cancer whose boss.

Re the trays, I also stopped during Tx with the permission of my dentist and resumed as soon after Tx as I could tolerate it. I used them ever night for 5 years post Tx and now 8+ years post Tx I still don't have any dental issues.

Your are not alone as we will be with you 24/7.

Thanks all for the great advice. I think part of the problem is that I live in Canada, and we live for our short and awesome summers! I have a daughter who wants to show her horse, a family cottage that I love to go to, and I feel like c r a p with a promise of worse to come. I keep trying to remind myself of the long run, but when I talked with the radiation oncologist he said at the outset, that by the numbers, I had about a 40% chance of recurrence without the radiation and a 20% chance with the radiation. That's what keeps my mind going around - how much pain for the 20%.

Over the last few years my 'luck' has been on the downside, my mother got cancer and I kinda messed up my career taking time off with her, both at the time of her original diagnosis and then when it reoccurred (she has small cell lung cancer - very aggressive). She plowed through her treatments like an absolute trooper. I feel so wimpy in comparison. When I went back to work after her death, I ended up having a bit of breakdown, for lack of a better word, and was off for more than a month.... and I returned in a wobbly state of affairs - things just started settling out, and my husband ended up having a serious mental breakdown - was hospitalized for a couple of weeks, and really and truly not himself for months and months. I ended up having my two girls really struggling, one began cutting herself, and his family blamed me squarely for his illness.

Things got really bad - and then we started to see the light and just as we were starting to settle out again - BAM, here comes the cancer card. That stupid thing on my tongue had been there for months and months but with all the stress with my husband, it was the last thing on my mind.

I'm sorry - what a long rant... I really do try and catch myself all the time, I am lucky that I have had the treatment that I have, and that I have the support that I have, but .... I have a few ways of dealing with things when I am feeling very upset - eating, riding or talking (read: venting). And, none are working for me right now so I don't have any great backup coping strategies. Writing will have to do. And, when I write this down, I really struggle to find the perspective...

I guess a long way of saying that I feel like I have been hitting speed bump after speed bump for about 6 years now and my endurance is shot...

Not sure if you guys were read the story of the little train trying to go up the hill, "I think I can, I think I can, I know I can..." but that's what you have to become is that little train. Heck some people breeze thru this Tx and continue their life normally. For me and I believe the vast majority, I had to endure 7 weeks of crap (starting week 4 and ending week 3 post Tx). You will need support and you need to tell your family this is ALL ABOUT YOU and help you get through this Tx and it's recovery.

Re the 20% difference, it's worth it IMO.

LWP, where are you being treated in Ontario? Is it Princess Margaret Hospital? Is there counselling service where you are? If so, it may help for you to go talk to someone there.

Hey there. I know it's kind of like a pile on situation. Right? One thing after another. And now with things getting BAD it's compounding the pain of the past few years (BTW - I think I told you this before - my mom died of lung cancer as well) Don't compare yourself to your mom. Seriously - two different cancers and frankly two radically different treatments.

My dad, and best friends father died last march - my dad was in the hospital/rehab for 8 months and I visited him daily and fed him and helped him it was a LONG HAUL. Two years after my own battle it was a time I value with him but it was NOT easy - particularly watching him give up and fade - he'd had a very debilitating stroke. I barely recovered from that and my father in law gets esophageal cancer and guess who did at least half of the driving, drs appointments and treatments with him...?

Life sometimes deals a shitty hand and you feel like you are the one standing in that hole and shoveling all the time. Talk. Really that's what I want to say. Children need to hear the truth. Sometimes not knowing is scarier than hearing the truth. With my kids I wasn't all doom and gloom but I never made any promises either. I told them straight up to prepare them - asked for some help when I needed it (but I was also very self directed in my own care) but mostly I just kept them informed and not in a negative way... basically I just told them this is what it is. You can't change it but how you deal with it makes a world of difference.
My husband was big on denial - still is - but I did force him to hear a few things I had to say about my health so that he too would be on board with what was going on.
One of the hardest things I had to do is watch a good friend die of a different kind of cancer literally a year and a half after I was finished treatment (we were being treated at the same time)
Life offers no guarantees so do the best you can to make each day worth it even if you feel like a thousand pounds of horse poop. SOON you will feel better. Just one foot in front of the other my dear - and don't think of it as 20% think of it as upping your survival rate from %60 (which is far too close to %50 for my liking) - to %80 which sounds MUCH BETTER. HUGS

Hi, LWP. You are not whining because there's a sort of wry self-awareness in your tone that is far from a whining sound:) I have felt just like you through both surgery and rsdiation.
A good cry can be cathartic although it's difficult when your kids are young. Writing, writing about your fear, pain, frustration and disappointment can help too. I love what you say about Canada's short but awesome summer because I always wondered how you guys coped with all that SNOW!
I hope you can get adequate pain relief from your RO. I refuse to feel pain if it can be thwarted by drugs. Felt very little during the whole 6 weeks, finishing on 19 May. Was given Oxycodone which I believe is almost identical to morphine and had the benefit in its immediate release form of delivering a mild euphoria. I'm also on anti-depressants and seeing a psychologist. Like you I've had a pile of disasters, one on top of the other and needed help.
I'm older and have no pressing responsibilities but remember how I felt when I got ovarian cancer at 49. First thought is to protect the kids who are just entering adolescence or adult life and it's hard, hard, hard.
Wishing you all the best.

Hi LWP, I sent you a PM, if you look at the flashing icon on the menu bar next to "My stuff," and then select "Messages" you'll see it.

Good luck. PS, I don't think you're a whiner at all, my message is about how to deal with anxiety from a practical and "mechanical" approach.

Good Luck with this business,

Bart

Little update - Week Four starts tomorrow.

The Good News - after some ups and downs - started IV fluids and they have made a bit difference in my pain level. My swallowing was really painful and so I was not able to get too much down, but I didn't find the hydromorphine really that helpful with the swallowing. After I stopped the fluoride trays, my mouth stopped burning as much as it had been.

My doctor recommended I up the dosage of the hydromorphine which made me start to get nauseous... So luckily I had some gravol around and it took a couple of days for my stomach to settle out. But now I am not taking anything for the pain, swallowing is still painful, but not nearly as bad.

I'm hoping to beg and plead and keep the IV hydration for the duration. It's made the world of difference, I know I still need to be eating more (or drinking more calories rather) but at least I seem to have a strategy that is working... for now...

Plus Week Four out of Seven feels good to say! Getting there....

I had 2 bags of IV fluids a day starting the week after treatment for about 5 months. I even carried a little fanny pack pump to work. It was mostly because the Cisplatin caused some creatinine issues but I felt so much better they kept doing it until the creatinine came back down.

Glad you've seen some improvement. Small victories add up.

It'a surprises me that ports and at least weekly fluids are not standard for our Tx. After my Tx nearly killed me literally, I begged Moffitt to do that to all future patients but they said I was the exception....yeah RIGHT!

Sometimes a little drama in the doctor's office (tears work) saves big drama like being hospitalized and going off-protocol for your treatment. And you really want to stay on protocol to beat this thing and get back to the horses.

Best wishes for the remainder of your treatment. And remember, your doctor listening to your communications isn't nearly as bad as what, say, a cranky mare might do to the vet.
Maria

Another update! I am mid way through Week 5 - and technically 66% there! Not that I am counting down the days, hours and minutes of this.... treatment.... journey... hell???

So - had a PICC line put in place today, even though I was struggling with tummy troubles. I am still struggling to find meal options. Ensure, One Resource, Boost all do NOT agree with my tummy. At all - I learned that the hard way (almost a very embarrassing situation avoided only by parking in a completely illegal spot and rushing into the nearest washroom!) that they are not a good fit for me. I am quasi-lactose intolerant - there is some stuff I can take, and some I can't. And, I can't take them...

At least the PICC line makes the hydration easier, and the WaterPik has been a lifesaver - really has improved my mouth hygiene and reduced the pain I was feeling. But the days of painkillers are back now...

I'm just hoping that my jaw continues to open enough to get to the end of the treatment - it's not a happy bunny right now

11 to go... I can see the finish line glimmering in the distance...

Thanks all for the support - your words help...

Seriously about the lactose intolerance. My mom is not lactose intolerant at all so all is good, but if it were me? I would be in a world of calorie hurt.

LWP,

Listen you must find a way to get the calories down and the water down without discomfort and nausea. Unfortunately it's probably going to get worse, even much worse from now until about 3 weeks post Tx. I would consider a nasal tube. It's a non surgical option to the PEG and it can REALLY help bypass the mouth pain and the gag reflex when swallowing.

I didnt realize any dairy products were part of the over the counter formulas. Get a nasal tube ASAP. With a nasal tube you can ask for prescription formulas that are made for people who are lactose intolerant.

Bottom line is you MUST get more calories in or you will soon hit a brick wall, probably ending with hospitalization. Ive been down that road and its horrible. Im sure I gave you the minimums and explained how important they were... at least 2500 calories and 48-64 oz of water every single day until you hit your one year anniversary post rads.

Good luck!!!

When John started using the tube, the main concern of the dietitian and the RO was whether he could tolerate it and John isn't lactose intolerant. So, I guess there are people who can't take some of the formulae. It is really important, though, for you to keep an eye on your weight and that you are taking in the essential nutrients. Do you have access to a dietitian at your hospital?

Try making your own protein shakes. You can minimize the carnage to your tastebuds by putting whatever you like into them - or nothing at all if you want it to be flavorless.

I use a vegan protein (two actually) chocolate and vanilla flavors (they have berry and flavorless too) - add fresh fruit. and for the lactose intolerant (or vegans/veg heads like myself) I add sugar free vanilla almond milk. Christine puts peanut butter and ice cream in hers. So it's an anything goes situation.

It packs a protein punch, calories (I add flax too) and is healthy and tolerable. (I have been doing this since treatment was over and Even though I feel terrific - I still have a massive smoothie every morning to kick off my day. But now I make sure it actually tastes decent.

If you have no taste at this point - then add veggies too - beets - kale - greens etc...

Hugs... it sucks but you can do it.

Hmmm, so the tummy troubles continue. The doctor now thinks that perhaps I have a bug - but I find that they rarely listen as much as they presume they know what is happening with you.

I did see a dietician, who was the one who pushed me towards Ensure, One Resource etc as the protein shakes I was making had started to burn my mouth and throat. But they gave me a couple of days of diarrhea, which, as you can imagine doesn't aid in keeping the food and fluids with you.

For the last two days I have been able to eat almost nothing without throwing up. The gave me maxeran (sp ?), which did less than gravol - and gravol helped but not enough to let me eat. The nurse today wondered if it was just an extreme case of heartburn, the doctor thinks it's a bug, and I'm not sure how much the super thick and disgusting mucus that I keep trying to clear plays into this.

Today in the radiation machine, I started to get really worried that I was going to end up throwing up in there... made it through but ended up gagging and retching afterwards.

But today they gave me an IV bag at the hospital with Zofran, and that helped a lot and quickly. I was able to eat some tonight although I am running around in circles trying to find options that won't make the situation worse. Then I'm going to take gravol over the weekend and see where we stand on Monday. The one godsend is that I am being hydrated everyday - so I'm getting a litre of fluids every day via the picc line. And, they did bloodwork today and said they'd call if it was not good - and there was no call.

The good thing is that I am pretty overweight, so starvation won't be happening anytime soon.

Cheryl - I'm going to try a flavourless protein shake tomorrow - I stopped making them because the fruit burned my throat and the peanut butter gave too much texture - but your idea is a good one, just soy milk and the vegan protein powder with some maple syrup. If I can get that down, I'll be happy...

Go for it let us know how you fare... Hugs

Can you ask your doctors to give you a prescription for Zofran so that you can take it at home when you get really nauseous? Do be careful, it is not so much losing the weight but the fluids that can make you feel really fatigued and unwell.

Another update

I had miscounted my days, I only have until June 30th. Two more treatments to go, finish line in sight.

I got a prescription for Zofran, which really helps, and then, after some discussions with the pharmacy, the Fentayl patch, which made my dizzy and nauseated. I just pulled it off after about 8 hours - did nothing for the pain and I threw up, which I haven't done since I started the Zofran on Wednesday. I don't think I can tolerate the opiates. I've only every been on opiates once before, when I was in the hospital for my partial glossectomy, and I was a vomiting queen until I got off of them.

TBH, I'd rather pain than vomiting and more pain due to the vomiting.

Anyway, almost there. Cannot wait.

If you removed the patch after only 8 hours, it wasnt enough time for it to really work. It takes a good 24 hours for the patch to begin working. It may have been too strong for you or any number of other reasons.

In a few more weeks you will be feeling much better. Hang in there and its ok to lean on us if you need help.

Best wishes!