So I consider myself a pretty tough cookie, having been through a lot in my 38 years. Right now it hurts to swallow and I have mouth sores on my tongue and on the inside of my bottom lip. I did not have radiation yesterday or today due to the hurricane (I am being treated in NYC). I know you guys have been through this and much much worse, but I just do not know how I am going to get through the next 5 weeks & the 2 weeks after. Already I am in pain. I have magic mouthwash and I am using the manuka honey. Hoping I can go in for treatment tomorrow and maybe get some additional meds. Sorry to complain on here, just need a boost form those who have gone through this, thanks so much.

If I understand correctly Jessica, you are having these problems after 2 weeks (10 treatments?) If so, that is quite early to have such serious side effects, but we are all different and you will need to buckle up your seatbelt because it sounds like it is going to be a rough ride - but one that you NEED to take.

As you mentioned, you need to see your doctor to get the right pain medication (something other the topical things you are talking about). In the meantime, use over the counter things like extra strength tylenol or T1's from a pharmacy.

Be sure you are eating as much as possible, and keeping well hydrated. That, plus being kind to yourself - getting a daily nap in - will help you to feel a bit better.

I have been through it twice. No, not fun but we know you WILLl get through this to finally get rid of the beast.

Right before I had my first set of treatments, I read a quote attributed to Winston Churchill - "You will never get where you want to go if you stop to throw rocks at every dog that barks".

Where you want to go is GOOD HEATH. The barking dogs are those side effects that are distracting you. Stay focused on your way to GOOD HEALTH - that is where you want to go and to a certain extent you are just going to have to plow through this to meet your goal.

We are here with you to help you along the way.

Hugs

Donna

Jessica,

it's OK to complain on here, it's what we are for! Pain is the enemy at this point so be sure to work with your medical team to keep this under control.

I remember the feeling actually of thinking "How the hell am I going to get through this" and in the end I had to just put my head down and drive on through. That's not to say that I did it by myself, I'm thankful that I had family and friends that picked me up and carried me (literally) when I didn't feel I had the strength to go on. Rely on others to help you, physically, mentally, and emotionally. These forums did that for me in recovery after the mandiblectomy when I was stuck in bed on a sh!t load of opiates. I often wonder how much easier I would've had it had I found these forums before treatment and surgery, sadly I found them 11 months after being diagnosed.

Hang in there my friend and just take it one step at a time and focus only on what you have to do next.

Keep the faith as my dear friend would say.

Eric

Thanks Eric, I really needed that so much. Donna thank you as well. When I saw the doc last week and asked for the magic mouthwash (I did not have any sores yet but thank goodness I asked for it) she told me that I will get mouth sores. Got them like 5 days later. We had a hurricane so I have have been home resting, not sure how long I will be able to work since I am in pain right now. Guess I will just need to take it one day at a time.

One day, one step my friend. Let's talk to the Dr's and see about getting your pain under control, it will make the road easier. Hang in there and know you have us in your corner my friend.

It is as always a one day at a time prospect. The manuka helps but so early in it does sound like you are going to have a tough time of it. Be meticulous about rinsing with the baking soda rinse, do it after you eat or put anything in your mouth. Some foods - texture, or ingredients are irritating. Try cleaning your teeth with something less shocking like a natural tooth paste with a different flavor, as peppermint burns, so does the flouride. A different toothpaste flavor( I use a fennel one bought at a natural food store ) will help. Try softer, bland foods, and thicker luke warm drinks. Pump up your protein intake as it's healing. add some to a smoothie, just to help increase calories. It will be a long hall. But keep in mind... survival is your goal. Even if it hurts like a bugger, you have to get your nutrition, and fluids. push yourself to meet your needs in this respect. Then make sure you get some decent pain meds from the dr.
hugs!

Jessica you CAN get thru this. We are here to help you every step of the way. Quitting is NOT an option. You will suffer thru like we all have done. No, its not easy at all but you must force yourself to push thru and finish every single treatment. you dont want to be in a situation where it comes back and your options are limited.

Get something for your pain. many including myself have used the fentanyl patch. You should start out with a 50mg and can always go up or down from there. Every change is a stepping stone and will need to be gradually reduced back down. Follow the directions exactly! never bend, fold tear or cut the patch. No long hot showers or baths. It takes about 24 hours for your body to adapt to the patch and you will feel some relief when it kicks in.

Also ask for a prescription for magic mouthwash. That will temporarily numb your mouth so you can eat and drink. No matter what you need to keep swallowing every single day even if it hurts. you dont want to have problems later with relearning how to swallow again.

Ask your doc for a prescription to get hydrated 3 times a week (Mon, Wed and Fri) in the chemo lab. This will greatly help you to get enough liquid intake. The key to this whole thing is your nutrition and hydration. Every single day you MUST get 48 oz of water and 2500 calories. If you dont get that much then you will feel so much worse and have a much harder time. Push yourself if you have to but do whatever it takes to get these amounts every single day. If you dont it will catch up with you and you will end up being hospitalized. It happened to me so I am very well versed in this. I felt like I was dying being malnourished and dehydrated. If you can get 3000 calorie and 60 oz of water a day, even better! I know it sounds like an outrageous amount but its not at all, its the minimum. Your body is fighting the cancer and also the treatments trying to rebuild itself which burns up calories at an incredible rate.

Not sure if you have a feeding tube or not but if you are struggling you may need to get one. If you have one ask for a feeding pump from your doctor. It takes a prescription. You can let this run overnight while you sleep and get an extra 1200 calories while you sleep. That will help you to meet your daily requirements. Talk all of this over with your nurses and doctors. they are there to help get you thru this. Ask for a nutritionist too, they can give all kinds of advice. Oh yeah, here is a list of easy to eat foods which may help you to take more in.

You CAN get thru this, we will guide you and help you every step of the way.
Hang in there!!!!!

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Thanks so much. Husband just made me a canned peach/yogurt shake which I managed to down with help from magic mouthwash, which is good. Trying to avoid the PEG if possible. Christine, that list is invaluable, thank you!!! I am wondering the the sores came out because I missed treatment yesterday and today? Probably not but ugh vey, this is going to be rough.

Need to get the pain under control and then get plenty of cals and water each and every day. Also watch out for contispation which can follow the pain meds. Get some Boost VHC which has 560 cals in a small 8 oz can.

Hang in there Jessica!
It sucks, we know, but like everyone has implied or said "quitting is not an option". You are way too young to not fight this with everything you have.
Did your ro give you a script for Diflucan? Sometimes the mouth sores are from thrush. Just a thought.
You can do this.
Kathy

Thanks so much for the support. I got pain meds so it is helping ALOT. Plus I am going to get my mouth sprayed every day I have treatment. They confirmed that since I am young they are pretty much bombing my mouth. I cannot tell you guys how much I appreciate your input and support.

That's what we are here for
To help. Glad to hear you are doing better.

Jessica, I am sorry things are starting out so rough on you. Everyone before me has provided such excellent advice that I really can't offer much more other than my own story of how I coped with this difficult treatment. I'm four years post treatment and treatment consisted of 64 doses of radiation and 7 weeks chemo. Everything was a struggle for me, particularly the first four weeks, and I won't give you details, but whatever could go wrong, did. I hated radiation, my fear was irrational as I was usually comfortable under the mask, but in between treatments I fretted about the next one. In other words, I was a mess. But I always kept my thoughts on the end game. No matter how bad I felt, I drank as much as possible, and had a small amount of yogurt just to keep in practice of eating. I couldn't speak after a few weeks so signed up for "Caring Bridge" so I could communicate my thoughts to family and friends. This was very therapeutic and I looked forward to it at the end of every day. I paid particular attention to the other cancer patients and found their strength very motivating. But every day was tough. I remember reaching treatment 54 and the dr. saying to me, "you're almost there, this will be no problem" and I thought, "you have no idea, if I only had one more treatment, it would be to much". And then suddenly, treatments were over, and the healing began. I hated the feeding tube as much as radiation treatments and used that as my motivation to get down as much food as possible, as quickly as possible, so I could get the tube removed. About two months out, the nutritionist gave me a recipe for a high calorie smoothie and it tasted like crap, but I knew I had to get this down to get the tube out. Every day I had a contest to drink this smoothie faster then the day before. Slowly, my body started to rebound which was motivating in itself. About 14 months after the last treatment, I ran a marathon. Take it one day at a time Jessica, little steps over time add up to big gains. You are a tough cookie to begin with, it won't be easy, but your toughness will be a huge asset getting you thru this.

Jessica, just think, you're first. post said you were struggling with the idea of 5 more weeks and now you are almost halfway through that and more than halfway through your treatment!

You're in the home stretch and we are all rooting you toward the finish. You can totally do this!

rduinc,

Never heard of anyone getting 64 rad sessions. Did they ever tell you how many gys you got? Did they do daily double sessions? Great recovery.

David,
Kevin got 60 at 125 each. Total of 7500.
Kathy

David

Of course, what Kathy meant to type was Kevin had 7500 cGy , which used to be called 7500 rads, which is 75 GY. (as we learned in the Olympics)
They just stretched out the treatments with lower dosages instead of the usual 40 TX and 70 t0 75 GY.
Charm

Jessica

As your radiology department or hospital if they have any samples of Caphosol. It's a new treatment for mouth sores. I understand the prescription is costly but my hospital just gave me the samples the drug representatives dropped off. Never hurts to ask. plus don't skimp on the pain pills.
Hang in there. You can do this,
Charm

Thanks Charm!! One of these days I'll get the right lingo, though I'd rather NOT!!!! ;o)
Me

Great hearing from THE CHARM!

So do they spread these out 1 session a day or double up so the lenght of rad time is still about 7 weeks?

If you are asking me David, Kev had it twice a day. He did 3 weeks, 1 week break, then another 3 weeks.
Kathy

Hi guys,

Thanks so much for all the support. So today was day 21 of rads. 12 more to go. My bathroom is now full of magic mouthwash, meds and creams. I have a fentaynal patch (I am sure I am spelling that wrong) which does not seem to do much but when I take oxycodone then I feel a bit better. I also decided to work from home part time, which makes life a bit easier. I am doing my best to get in as many calories as possible with the high boost drinks. Mucous is crazy. Cough medicine seems to work a bit but again, not much. I feel like a camel spitting all the time. I am so happy I found this site, because if I did not I do not know what I would have done.

Curly,


When Reg was going through chemo and rads back in 2007, I found a company that makes these Scandi Shakes. Mainly made for patients with cancer or sever nutritional needs. They pack 600 calories with 8 oz. of milk. They taste good. Not mediciney ike ensure. They come in strwberry, chocolate and vanilla. With the vanilla the flavors are endless. I used to add peanut butter to the chocolate, or banana to the strawberry. I would add bluberries to the vanilla. The company also has a tasteless powder called scandi-cal. 35 calories per 1 tbsp. It mixes well with any food or beverage. You can find the company on the web @ axcan.com. Alittle pricey but they really helped my husband. In fact I've already ordered some for his upcoming surgery.

Hi Jessica.

Only 12 left!! Awesome - they will (in hindsite) go quickly. Sounds like you are handling it all remarkably well if you are still working - good for you!! You are alot stronger than you thought you were.

With regard to the mucous - this might not work well for you now as your mouth will be full of sores, but as it heals and the mucous is still there, get a water pik and let it clean out your entire mouth a couple of times a day. Lord that does feel wonderful to have a 'NORMAL' mouth even if it is short lived.
But, I stress - not now. When I was at this point of radiation I had many sores in my mouth - even brushing my teeth caused the sores/blisters to break. Be tender - they will heal, but it will take time.

Hugs

Donna

Thanks Bette and Donna. I have been getting my mouth sprayed every day by the nurses which is great and cleans out the mucus. Only problem is that like 1/2 hour later it is back. I tried the waterpik at home but it made me nauseous I think because I was not using it correctly, maybe I was aiming to far back (sorry for the TMI). Will try again after this is over. Every time I finish the shakes I give myself a little cheer for finishing them. Such a change from when I used to eat like a horse. Bette going to try the Scandi Shake, thank you for the recommendation.

Did I say waterpik to you yet? I say it all the time. Waterpik - cleans out the GUK, keeps your mouth clean, use a mild non alcoholic mouth wash put a bit in the waterpik bowl with a bunch of Luke warm water, use the tongue cleaner attachment on the lowest setting, and clean around your mouth. Tis awesome!

HI Curly
you already have some good advice, i am impressed you are still working my last rad was 1st of september and I can only tell you how good i feel now to then. So it really is a full time job just managing the treatment issues and soldiering through this last week, remember it is the treatment giving you grief not the cancer, and you are fighting for a big reward. From my last chemo every day has been up all be it baby steps. All I could do was amuse myself seeing the shapes my spit made in the sink, like eskimos with snow you will have dozens of different words to describe the different shape form texture of mucus you will go through. 8 weeks out of treatment my mouth is so dry i crave a bit saliva. keep on keeping on.

Jessica--in addition to what the others have suggested, consider the possibility that you may be dealing with depression also. It sneaks up on you. The treatment can be very emotionally traumatic as well as physically challenging. Antidepressants and counseling can be extremely helpful. I did not see the depression in myself, but others did. When I first went back for a follow-up appt two weeks after my radiation tx's had ended I found myself in that same waiting room I had sat in every day for my treatments, and within minutes I became very upset, nauseated, and highly distressed. I broke down and cried when I saw my doc that day, and that's when I began to realize just how emotionally challenging it had all been for me. Short story: I am now taking Remeron, a mild antidepressant that has the advantage of improving appetite (was struggling to get an adequate intake, had lost 40 lbs in 2 1/2 mos). It has helped my sleep and my mood. If you are having trouble coping, which many of us do at intervals, it is worth being evaluated for depression, as once that improves coping becomes very much easier. Good luck, you are in my prayers!

Cubankeith, great to see you back, I was wondering how you were doing. I'm finding it difficult to put spit in quite the same category as snow though, but you made me laugh.

Curly, it is definitely about small steps forward, with the odd one backwards, so take heart when you see small advances. Sally

CubanKeith, you made me laugh with the vision of spit LOL. Definitely this process is one step forward, one step back. 6 more treatments left. Thanks Ed about the depression information. No doubt I am dealing with it, I am kind of in that state of when this is over, then I will deal with my emotions. Just going to keep pushing forward for the next week so I can get through it. This board has been just so helpful I would be so lost if I never found you guys.

The remeron has helped me with my intake; had lost almost 12 lbs in two weeks when I went to my last follow-up appt, but since then 10 days ago) I have actually GAINED a lb--the first time that has happened since I started treatment in August. And it does get better: on Thanksgiving I was actually able to taste 75% of what I tried, and green beans and cucumbers were themselves most enough that not even my very dry mouth got in the way of enjoying some of those. Take care, and I will be hoping for a good outcome for you.

Onward and upward!!!

One more week, you are so close!

Yep you'll do it then you get you heal... And sleep. Hugs!

Well I thought I was doing 33 treatments and it turns out that it is 30 so tomorrow is my last treatment! I have been having so many dreams about food lately (guess watching the food network is not helping with that) but thank goodness for those VHC boost shakes - I seriously would be lost without them. I did not have a PEG so doing my best to swallow which is a bit rough. How long did it take you guys to eat solid food again after treatments stopped? Thank you all so much again.

My last treatment was 5-6 weeks ago. I was able to drink milkshakes within a week or two, but I was fortunate to have rarely had mouth sores or pain in general. I tried softer foods like sherbet thereafter, and solid foods first came about 3 1/2 weeks after the last treatment. Everyone is really different, however, but for me I have gotten a great deal of my taste back already--everything I tried on thanksgiving tasted as I remember it except for mashed potatoes. I notice that some flavors are still very exaggerated and thus tastable, but not palatable: chocolate, savory flavors like most spices, etc. The bigger issue for me is a completely dry mouth that makes eating anything that isn't inherently juicy very challenging unless I add water to my mouth as I chew (green beans and cucumbers worked best for me, meat and bread the worst). My intake is still about 90% boost VHC. Instead of continuing to lose weight I have gained back 1 lb by pushing myself to do more Boost and having milkshakes more often (a Steak and Shake chocolate shake is 630 calories). I also mix my Boost 50:50 with whole milk, making each one of those about 670 calories; I like it much better with the milk, as tastes better and is not so thick. Good luck!

I was eating solid regular foods a month after TX, but I did not get my sense of taste back until about 6 months after wards. I could not eat spicy foods until a year after TX but did not get to do that long since the cancer came back around the same time.
I was able to get down spoonfuls of soup immediately after TX the first time and could eat soft foods which are technically solid not liquid within the first week after TX.
Since you got through without a PEG, you have retained your swallowing so you should be back very quickly also.
Everybody is different of course but ease into it.
Christine has a list of easy to eat foods she shares.
You can also try my CAT pie recipe
Charm's Cat Pie recipe
Charm

My third week post Tx was when I asked my wife to go and get me KFC mashed potaotes w/ gravy, their mac n cheese and also pick up a can of Fruit Cocktail. It took forever to eat a small amount of each and I couldn't taste much but a huge moment was shared by all!

Ditto on week three for Bill and the return of food by mouth. We were eating at a local restaurant and the proprietor realized that this was a "moment" for Bill and I. She brought more of the yummy soup Bill was eating for us to take home. Very nice!

We are still so thankful for a relatively quick recovery for Bill.

Deb

Oh Charm...I'm drooling thinking about the CAT pie Bev made for us this summer! Good lord it was good and I highly recommend it! I have severe dysphasia that limits eating most solid foods (my diet is over 90% liquid) but I could eat this and it was UH-MAZIN!

It still really bums me out when I see how people on the forums eat, especially using the meal replacements like Boost and Ensure and gaining "weight" based on calories consumption alone...but ce'st la vie.