Posted By: Kristen S After Radiation treatment questions - 07-02-2018 05:06 AM
Okay...today was the first difficult day post rads. I am 12 days post rads and I can't believe the amount of pain I am in. My throat is so sore-it feels like it's on fire! It's so frustrating because the day started off great. I have even started to chew more by mouth and swallow liquids. I was so happy to not have to use the feeding tube 100% and now I feel like I've had a setback.
I've taken at least 3-4 doses of my pain meds today and I'm going to have to take much more just to sleep tonight. I see my oncologist in 2 days and I hope he's got some more potent stuff to get me through this.
When will I start to feel some relief? 3 weeks post rads??!!! When do you hit the "bottom of the barrel" before it gets better? Please tell me I'm there!!!
Somebody, please send me some encouragement and let me know what to expect!
Posted By: ChristineB Re: After Radiation treatment questions - 07-02-2018 11:50 AM
Kristen, Im so sorry you are starting to struggle with your recovery!!! Just because rads are over, they're still working hard to eliminate the cancer. My doc always told me its one month of recovery for every week of rads.Most patients go thru the worst of rads the last week or 2 and the first 2-3 weeks post rads. Then one day they will wake up and not feel quite so bad as they had been feeling. Usually that happens about the 14th to the 21st day post rads. Im not saying they will feel better, just they wont feel quite as crappy as they had the day before. The recovery phase can be very challenging!!! One day patients will feel a little more like their regular pre-cancer selves then by evening they're back to feeling lousy again. Theres setbacks that can boggle the mind where it can be 3 months post rads and there has been improvements in stamina and less pain then it can all change in an instant and its like they're right back to how they felt when they first finished rads. These setbacks can last for part of a day or several days.

The very best thing you can do is to focus on your intake and then better manage the pain. Your daily intake is the key to this entire adventure. Every single day until at the very least you hit your one year post rads you still will need to take in at least 2500 calories and 48-64 oz of water. Think back to the past few days and try to remember if after finishing rads if you kept up the increased intake. If you have hit at least 2500 calories and 48-64 oz of fluids then you should up your calories to take in 3000 a day for the next few days to pull you out of this slump. Next time you see your doc ask if its ok to add some high protein whey powder to your diet to help speed your healing. If you have been having trouble getting enough fluids you can call your doc and ask them to send a prescription to the chemo lab to get extra hydration. That usually helps patients to feel much better. This is especially important with the upcoming holiday this week. If you're feeling really bad you can always go to the ER where you should get extra fluids.

Be extra careful with taking pain meds. When feeling lousy it can be hard to remember when you last took meds. Mark it down somewhere near where you take your meds to make certain you arent taking the meds more often than you should. Im very surprised you got thru your treatments without over the counter pain meds, most patients dont. By keeping a list, you can show it to your doc and he should have a better understanding of what you are currently going thru. Taking pain meds to sleep or along with sleeping meds can be a very dangerous combo. Check with your doc about something you can take to help you to sleep. Most patients find they have start having issues with insomnia around the middle or end of their treatments which can last several weeks.

Im sure you must be feeling very upset about your setback. I can still remember my recovery and how much I struggled thru it. I had a couple hospitalizations for malnutrition and dehydration due to sleeping too much and being too tired to set up my feeding formula. It really hits patients hard mentally when they are thinking they should be making progress instead of going backwards. Try to start setting very small daily goals to help you feel a sense of accomplishment. It doesnt have to be running a marathon, maybe just walking to the end of your driveway every day for a week then extending that to the end of the block. By seeing a marked increase in your stamina will help you to feel more positive. I know its not easy right now but you really will begin to feel much better very, very soon. If you have anxiety meds, you may want to consider taking them for a few weeks. Maybe this will help you to think of things in a slightly different way and take your recovery one step and day and a time. Be careful with meds, check for any potential negative drug interactions with your doc or pharmacy. Patients will often feel a sense of abandonment when their treatments end and they dont see or interact with their medical team on a daily basis anymore. Your doctors/nurses are still there 24/7. There is always a doc on call so dont feel isolated like you are completely on your own. Dont hesitate to call (even at 2am) if you are showing any major changes in your condition.

Hang in there and soon you will be back on track and see progress again. If you are struggling, take positive steps to help pull yourself out of it. We're always here to lean on if you need to. We completely understand where you are coming from and the best ways to get back on track.
Posted By: Kristen S Re: After Radiation treatment questions - 07-04-2018 12:15 AM
Hi Christine,

Thank you for the encouraging words!! I saw my oncologist today and he gave me a thumbs up on the recovery process. I am 14 days post rads and actually feel okay today. I need to remember to take it day by day and continue to be patient. Patience and acceptance are very hard lessons to learn.

I am focusing on my nutritional health and was up a few pounds at today's appointment. I've been using my PEG tube exclusively for the past month but thought I would try to do some eating via mouth this past weekend. Turns out that may not have been a good thing. My throat tissue was very sore (feels like I have strep) and the oncologist said that it's the mucosa trying to heal. Whatever I drank or ate may have irritated the tissue. He gave me some ideas of other foods to try.
I'm already adding protein powder to my smoothies and I've also started to drink Glucosolve that I've dissolved in a nectar juice. I'm doing anything and everything recommended by the doctors/nurses and dietitians.

I got through rads by using both OTC and RX meds. Thankfully I'm only taking about 4-5 RX pain pills a day. I told the oncologist today and he said that was fine.

Positive steps!!!
Posted By: DeniseG Re: After Radiation treatment questions - 07-05-2018 06:38 PM
Hang in there! I am almost 2 months past rads and am feeling much better. I had a terrible time with nutrition. I am lactose intolerant so any milk based supplement was a no go as were milk shakes. The last day of my treatment I immediately embarked on a trip (not a good idea but was planned) which consisted of a flight halfway across country and a road trip back home. By then I was taking pain meds consistantly and the mucositis was a constant issue. Anyway, during the trip back I came to the conclusion that I had to supplement with some Boost or Ensure and I would take some Lactaid and see how it went. I did ok, still not enough but ok. In the end I lost 30 pounds and my energy was nil, but it has slowly come back. I am eating normally now but after a few bites food doesn't taste good so I don't eat much. The mucous is still there in the back of my throat and is really hard to get out now so I still have some irritation when swallowing. The burn on my neck healed rather quickly but now a new sensitivity just started on the skin of my upper shoulders and back of my neck. Don't know if that is related to the radiation or something else though. Right now I feel almost normal and my energy is much better. You might ask your doctor for the lidocaine rinse for your throat so you can eat and drink more comfortably until it heals more. I have seen my radiation oncologist and my ENT and everything is looking good, the RO didn't even think I would need a PET scan in the future but my ENT does, in about 2 months, I will go with his advice, can't hurt! I thought that when treatment ended I would quickly recover and be back to normal. But after reading many posts here I found out that is probably not the case. Recovery can be many months or longer and we just have to be patient. So here's hoping that you will begin to feel better much sooner than later.
Posted By: Linda Linch Re: After Radiation treatment questions - 07-05-2018 08:04 PM
Glad things are going better for you! I’m a couple weeks behind you and it gives me something to look forward to! Keep up the encouraging posts! It’s so helpful to those of us that get stuck wondering if things will improve!

Hugs,
Linda
Posted By: Kristen S Re: After Radiation treatment questions - 07-06-2018 10:49 PM
Hello to DeniseG and Linda Linch- so nice to hear from both of you!!!

Today is Day 17 post rads and I'm hanging in there. The excessive amount of mucus is back and I'm having to use my spit cup all day. That's been a frustrating setback for me as it keeps me home bound. Last week I didn't need it at all, but these past few days, that's been a change. The other change is fatigue. I am soooo tired allll the time! I'm sleeping well at night (thank goodness) and after breakfast I usually go back to bed to read or nap. After lunch I nap and then before dinner I nap. I try to limit my naps to only about an hour so that I can do more sleeping at night. I'm also on Day 6 of the taper off of my steroid, so that may be contributing to the fatigue as well.

I picked up more pain med from my pharmacy yesterday but the funny thing is that I'm not in much pain at all. I've been taking ibuprofen for past 2 days and it seems to do the job. My mouth just doesn't feel good. Can't say it's painful but it's sometimes tingly, sometimes feels swollen and sometimes feels thick. I'm able to swallow juices and liquids although I have no desire to do anything more than that. I do want to get my PEG tube out but know that I'm not ready for 100% oral feeding.

I am planning a trip to the East Coast August 18-27th and the plan is to fly. I'm super curious to see what state I'll be in by then. I was hoping PEG would be out by then but I've had 2 retired oncology nurses tell me otherwise. They think I'll still have it in, but they reassured me that it's fine to travel. As long as my energy is up by then and I don't have to use my spit cup, I'll be thrilled!

I can't wait to say that I am feeling much better!!! I'm hoping that after Day 21 post rads, it'll just get better and better. Or as Christine the administor puts it, you won't feel quite as crappy as you did the day before. I'll take it.

I was told that besides anal cancer, this is the most difficult to recover from. I believe it! The patience and acceptance required to get through this is astronomical! I take it day by day.....
Posted By: ChristineB Re: After Radiation treatment questions - 07-07-2018 01:11 AM
Kristen, Im sorry I always seem to be the one to burst your bubble. Be careful about getting rid of your feeding tube too quickly. Its so much better to have it and not need it than to need it and its not there. Especially if you have an upcoming trip where you are flying. Traveling takes ALOT out of a person!!!! I have traveled quite a bit the last several years and know how hard it is walking miles thru airports, not getting enough to eat or drink and being thrown off my regular routines. Its When talking about someone who recently finished their rads, they are not up to their regular activities and will easily tire. Flying also is very hard on the body! A few times Ive been pretty sick the doctors have asked me if I had been traveling. When I say yes, they ask a bunch more questions. Theres something about airline air that helps to dehydrate passengers. Im sorry I havent felt the best when I hear about these things and I never asked for clarity. The docs have also mentioned being confined in a small area with lots of people from all over the place, someone with a compromised immune system is much more susceptible to picking up all kinds of things, even when they are extra careful and use hand sanitizer often. The docs told me to avoid crowds and any public places as much as possible until my check ups show my blood work coming back with normal numbers which shows my immune system is working normally again. It took me several years until I had normal levels on my blood work. But, my case was very different than most patients. My situation was a complicated one with having OC diagnosed again in each of the next 2 years.

The first time I went to my gastro doc to get my feeding tube removed, he wouldnt take it out. My doc said until I could go 2 months without using it at all to not even consider getting rid of it. To my dismay, the doc was right too. Several months later after I had been doing much better with my eating and didnt depend on the feeding tube for my intake I went back and this time I had it removed. Within the first 2 weeks I dropped at least 10 pounds and quickly realized even though I thought I was doing well enough to get rid of the PEG, my rapid weight loss told me I was not ready to lose that darn tube. How I detested that thing too!!! Now Im dependent on having a feeding tube for the rest of my life and after everything Ive been thru, having a feeding tube is no big deal to me anymore. Its just another tool to make my life a little easier to take in everything thats needed to get a balanced diet each day.

Please be very, very careful about traveling when you have just recently finished your rads!!! Thinking back to when I was 2 months post rads, I still had a long way to go until I considered myself recovered. At only 2 months post rads, I had just started back to my job on a part time basis. I remember how exhausted I was the first few weeks back and that was just working part time. Everything seemed to wear me out, just talking to my co-workers felt like I had run a marathon. I really struggled thru my rads almost right from the start and the recovery phase seemed to be one long phase of day after day of not feeling the best and not noticing much progress. You seemed to do much better than I did with your rads, with your recovery so far too. I hope you continue to make steady improvements and are back to as close to your regular life as you can get very soon. We can all never recover as quickly as what we all think we should. Time seems to run much slower during the recovery phase.

Keep up the good work with your recovery!!! It sounds to me like you really are doing an excellent job taking care of yourself and everything else during your rads and recovery phases. smile


PS... Please add a signature so we can better assist you. Ive sent you a link in a private message (PM) that has step by step instructions on how to add your signature. Click on the tiny flashing envelope next to your "My Stuff" tab to get your PM's. or click on the "My Stuff" tab or tiny arrow then on the drop down menu click on "private messages". Thanks!!!
Posted By: Kristen S Re: After Radiation treatment questions - 07-07-2018 04:40 AM
Hi Christine- no worries, you're not bursting my bubble! You're keeping me in a reality check. My oncologist said that I would probably have my PEG tube in for minimum of 3 months post rads, which brings us to September. I agree that I should keep it in and I will. A girl can always dream, right??!!

The plan for flying is pretty simple, thankfully! I'm travelling with my daughter and parents. It's a coast to coast flight but direct, non-stop. And once we arrive on the East Coast, we have a rental car to our final destination. And once we arrive at the final destination, I'll be in a very relaxed setting with lots of family around for 10 days. It's all good! I'm planning on wearing a mask and will talk to my oncologist before the trip for any tips.

I don't have any plans to go back to work until after this trip to the East Coast. I'm a dental hygienist who typically sees patients every hour and a full day for me would be 9 patients!! I can't imagine doing that again until later this Fall. The thought alone exhausts me! Returning to work is the furthest thing from my mind at the moment.

I can only hope that tomorrow is better for my mucus- so tired of the spit cup! I wasn't using it last week but for some reason, needed it today. I was hoping that I was over that side effect. I'm thankful that I haven't needed the heavy pain meds today- ibuprofen seems to be doing the job just fine. It's so weird how each day is a bit different. Even how you feel from the morning time vs. the evening time. For example, this morning I took a shower and did a load of laundry. Spent the rest of the day exhausted. Until after dinner. I played Tripoley with the family, watched 2 episodes of a show with husband, put clean sheets on the bed and now I feel energized! But, I'm forcing myself to bed.

I'll look into the signature- thanks!!



Posted By: Kristen S Re: After Radiation treatment questions - 07-07-2018 04:51 AM
And one last thing Christine- I am GAINING weight post rads. Yippee! I was up 2 pounds at my last visit. I am super focused on the weight part. I lost about 20 lbs after the surgery, gained about 10 lbs back before I started rads and am now slowly getting back to my normal weight. That's one great thing about the feeding tube and using the VitaMix. I'm throwing everything and anything in that thing. I'm focused on lots of protein, calories and the good healthy fats. I'm also still supplementing with Jevity. Each container of Jevity is 355 calories and I use three a day. Sometimes I do feedings at night w/ the Jevity or I'll add to smoothies. Either way, I'm packing in those calories!!! That was one thing that I picked up from you on a previous post-the importance of the nutrition. I WISH I had used the VitaMix post my surgery. I wonder how much faster I would have healed. I used Jevity exclusively after surgery for probably 2 1/2 months before doing the yogurt and soft foods. I WISH I had used the VitaMix from the day I got home from hospital. Oh well, at least I have it now. I think that's part of my successful recovery.

Thanks!!
Posted By: Kristen S Re: After Radiation treatment questions - 07-07-2018 05:18 PM
Things WILL improve...hang in there! Unfortunately recovery goes really slow. Take it day by day. Have you finished your rads yet?
Posted By: Linda Linch Re: After Radiation treatment questions - 07-07-2018 07:16 PM
Yes I’m almost 7 weeks post. No feeding tube so I’m still drinking my meals. Had a dream that I was eating some tortilla chips.....woke up and I was sad!😂
Some days I feel pretty good. Some days I feel like I took a step backwards. Have lost 30 pounds since this adventure started back in February so I’m trying to add more calories to everything. I have to admit I like the weight loss body! But I do t want to lose any more. I will be so happy when the tongue sores heal!!

Thanks for the encouragement! Positivity is such a help when you are going through tough times!

Linda
Posted By: DeniseG Re: After Radiation treatment questions - 07-08-2018 03:05 AM
You're not missing anything Linda, tortilla chips taste awful right now, as do most things. I am just over 8 weeks done and food is still a challenge. I lost 30 pounds and could still stand to lose more so it's not a problem. You just realize how much enjoyment plays into eating. As for traveling, I said before I took a flight the day I finished rads. I worried about taking a 3 hour flight with the mucous issue and finding adequate nutrition. I packed some liquids and powders and checked a cooler. I took a spit cup and wore disposable underwear in case I had an accident while coughing (happens when you're over 50). I wore a scarf to hide the burn on my neck. I was very self conscious. Survived the road trip. Went to San Francisco on Memorial Day weekend and on another road trip next month. I haven't gotten sick, even though I was in bad shape nutrition wise after finishing rads. Just take it easy!
Posted By: Kristen S Re: After Radiation treatment questions - 07-08-2018 03:30 AM
Hi Denise- I'm starting to get a bit worried about my trip in August. I'm flying from Seattle to Philly. Direct, non-stop flight. I do have a PEG feeding tube in and plan on keeping it in for a while. I'm HOPING by then that I can drink liquids semi-comfortably but plan to pack blended food I've prepared the day of as well as my supplemental Jevity. I'm planning on doing a tube feeding prior to boarding the plane and then as soon as I get to Philly. Am I nuts for doing this???!!!!
I am on Day 18 post rads and the biggest issue is the excess mucus and the sores in my mouth. I have a big sore underneath my tongue on the left as well as on top of my tongue on the left. How has your mucus problem resolved? Any better? I'm so frustrated by the excess mucus. I literally can stand over a sink and just drain. It's a constant flow of mucus. When I use my spit cup, I find that I also mouth breathe and then my throat gets dry and I start to cough. And then coughing makes my sores hurt more and then I start to gag. I'm SO OVER this part of the recovery. PLEASE, PLEASE, PLEASE tell me that it gets better. Really hoping that this side effect goes away before I fly. When I fly out, it'll be 8 1/2 weeks post rads.
Tell me I can do this! smile
Posted By: Kristen S Re: After Radiation treatment questions - 07-08-2018 03:34 AM
Linda- you are a HERO for doing this w/o a feeding tube. I CANNOT imagine trying to consume liquids with all of the sores in my mouth. Sounds like you are doing great! That is one of my goals is to be able to swallow liquids and not use my feeding tube 100% of the time as I am now. You are about 4 weeks ahead of me in recovery. How are you doing with your mucus? Are you having any issues with that? How are you doing energy wise? Have you found a time in the recovery process where you really feel like you turned a corner? I'll be 3 weeks post rads this Tuesday and I'm hoping to wake up feeling awesome! A girl can always dream....right?!
Yes, focusing on the positives are the best we can do! A day at a time......
Posted By: Kristen S Re: After Radiation treatment questions - 07-08-2018 03:37 AM
Denise- One last question. Did you do the TSA Care program? I'm just wondering about packing the liquids and feeding supplies. Also wondering about the Magic Mouthwash since it's a liquid prescription. I want to be sure that everything will go through TSA with no issues!
I can do this- right???!!!
Posted By: DeniseG Re: After Radiation treatment questions - 07-08-2018 07:40 AM
No I didn't, I just packed a small cooler with bottles of protein shakes and checked it, had no problem. Did the same to SF. With the prescription you probably want to take it in your carry on and follow TSA rules. I did have liquid lidocaine with me and it came in 100ml bottles so it was within limits. So if you have magic mouthwash have the pharmacist put it in 100ml bottles. Also, if you take your liquid for your tube feeding through TSA declare it, if you have any questions check their website and call ahead of tie. You will be fine!
Posted By: DeniseG Re: After Radiation treatment questions - 07-08-2018 08:04 AM
It does get better I promise! Keep using the magic mouthwash especially before you try to eat or drink anything. My mouth sores resolved within several weeks and I graduated to Oral-gel. I have no pain now but cannot eat or drink anything spicy or irritating, throat still gets a little raw feeling sometimes. The mucous is still present but is thick and in the back of my throat and doesn't want to budge. But it is not dripping and I don't need a spit cup, it's just aggravating. The mucous was and is the most frustrating side effect for me too. I think that probably two to three weeks ago I turned a corner. My energy level improved and I started eating more normally. We just have to be patient, time is the healer. I am fortunate to be retired because I would not have been able to keep working through this and even now would not be able to go back to work. This is a rough thing to go through! Just hang in there and enjoy your trip!
Posted By: KristenS Re: After Radiation treatment questions - 07-08-2018 09:02 AM
Not nuts ... just ready to DO stuff again. smile

I was crazier ... I took a trip in the MIDDLE of chemo and rads. Fortunately, it was right before the downhill turn (not that I could have foreseen that), but still ... in retrospect, it was a darn foolish thing to do. But it kept my spirits up for the rest of my treatment, to have had that special weekend off. I was just a couple hours away from home by car, and very near some decent hospitals, for a woodcarving retreat with some dear friends. Nobody wanted me to travel alone so my daughter went with me. Note: My daughter was all of ten years old at the time, LOL. But it meant she got to do the workshop, too ... we were carving 6" dolls, and it was just so much fun. The instructor rocked, the company was good ... it was good for the soul to have that respite. (I've asked my husband since then why on earth he let me go, and he's said when I get an idea in my head, there's no stopping me anyway, and he could tell I needed it. And all the other folks were really sweet about taking good care of me, making me rest when I started to look over-fatigued. I still can't believe I put everyone through that...)

So ... if this trip is something special for YOU, that will refresh your soul ... go for it! Be careful, of course, and pack for contingencies, but go ahead and do it. Assume you'll need the tube and the medicines and the formula, but be pleasantly surprised if you're able to enjoy a milkshake or something while you're out and about. And just have some fun. Don't overdo whatever the purpose of your trip is. Take it easy. You'll still fatigue quicker than you think. My treatments were in February and March; I think my tube came out end of May or early June. We did take a family beach trip that October (beware of the sun! you WILL have to watch for sunburn for a year or so post-rads) and that was kind of nice because we made it a slow schedule so I could rest as often as I needed ... which was still often. You're doing good with your weight, better than I was, so maybe you'll be further along, but still ... go ahead and be prepared to rest and enjoy resting, just in case.

((hugs)) You'll get there!
Posted By: travelottie Re: After Radiation treatment questions - 07-08-2018 12:05 PM
I would like to gently suggest that you reread Christine's comments regarding your travel plans. I share many of her concerns. Air travel can be very unpredictable--delays, rerouting, cancelled flights, being stuck on runway and unable to exit plane, etc. Freezing cold or too hot. It can be exhausting and also frustrating. In addition, dry & poor air quality, increased risk of airborne infections.

But perhaps most of all, I don't think you can predict how you will feel next month. Being determined to take this trip can be good or bad. Obviously, something to look forward to and an accomplishment to reach. OTOH, if you aren't up to it and do it anyway, it could be even more upsetting.

I am particularly concerned about the air travel part.I thought long and hard before writing this. I don't want to be overly negative; I want to be cautious. If everything goes just right, it could work out. If it doesn't go right, how would you react? That, I think is what you must consider.

My husband and I are seasoned travelers, both domestic and international. We were worried that he would never feel up to long trips again. We started with overnight car trips and I'm happy to report that by approximately 9 months post treatment we were enjoying long distance travel again.
Posted By: Linda Linch Re: After Radiation treatment questions - 07-08-2018 04:43 PM
I was dealing with a lot of mucus. I could almost blow it out of my mouth like blowing my nose. My sweet husband bought boxes and boxes of Kleenex so that I had some close by wherever I was. . And then one day it just stopped. I use a humidifier by my bedside and keep a towel on my pillow that I change daily to catch my “drool” at night but even that has lessened. Seems like that happened around 3-4 weeks post rads. I carry around a squeeze bottle of baking soda, salt and water mixture wherever I go and rinse often.

I have an airplane trip planned in a few weeks but it’s one I have to take as it’s for my MD Anderson follow ups. My husband has to take our daughter back out to Arizona for college so I found a good friend to go with me. I am hoping my energy levels are a bit better by then. I have some early morning appointments and right now I can’t get going before 11 am! Hope I can get up and going in time!!

Praying and believing for better times ahead!
Linda
Posted By: travelottie Re: After Radiation treatment questions - 07-08-2018 05:44 PM
Linda,
Wishing you the best of luck with your appointment. Obviously a follow-up with MD Anderson is a different situation and I would certainly fly for that purpose, preparing myself by checking over the tips mentioned in this thread.
Lottie.
Posted By: Kristen S Re: After Radiation treatment questions - 07-09-2018 04:58 PM
Linda- thanks for the suggestion about the humidifier. Yesterday was a particularly bad day in regards to the excess mucus. It won't stop! I constantly have my spit cup at the ready and last night was particularly bad. Part of my frustration is that I get a tickle at the back of my throat and when I try to cough, the sores on my tongue hurt. So, I do a half cough and then I start to gag! I'm a mess!
I had taken a nap in the mid afternoon and when I was heading to bed around 10pm, I felt tired. But after reading for a few minutes I felt wide awake and I couldn't sleep. It didn't help of course that I couldn't stop drooling!!! I was up for at least 3 hours and I was getting upset. And then your post about having the humidifier jumped in my head and I thought, well let's try it. I ended up taking a pain meds and after hooking up the humidifier, I was able to sleep! Whoo-hoo! I got in about 6 hours, so I should be good until after lunch. smile

Good luck with your travels!!
Posted By: Kristen S Re: After Radiation treatment questions - 07-09-2018 05:08 PM
Denise- when did all of your mouth sores resolve themselves? I have one particular sore that's on the side of my tongue and it feels like it extends down to the floor of my mouth. It's the grand-daddy of all sores and I keep thinking that if this one would just heal, I'd be much better off!

Yes, being patient is the key.

I have used the Magic Mouthwash here and there but since I'm still using my PEG 100% of the time, I haven't used the mouthwash recently. I'm thinking that when my mucus settles down a bit and I'm ready to try eating orally again, then I'll refill my prescription and use more frequently. The mouthwash I have now expired last month. I used it the other day and it had turned a weird brown color. I think it's best to just get a refill! smile

Another question- how is your speech coming along? Have you had any speech therapy as part of your healing process? My speech was pretty good until the last week or two of rads. My speech now (3 weeks post rads tomorrow!!) is marginally okay. I find that I have to repeat myself more than once. I think part of the difficulty though is the mucus. Whenever I try to speak, it sounds like I have marbles in my mouth. And then all of a sudden, the flow of mucus erupts! You just have to laugh!!

smile

Posted By: Kristen S Re: After Radiation treatment questions - 07-09-2018 05:11 PM
Thanks for sharing your concerns about the travel plans. Thankfully the trip is still just shy of 6 weeks away. I'm starting to feel a lot better week by week. As Christine says, it feels nice to wake up and feel less crappy than the day before!

I will definitely be prepared for different scenarios and I will be cautious. smile
Posted By: Kristen S Re: After Radiation treatment questions - 07-09-2018 05:18 PM
Hello to the other Kristen S!

Thanks for the encouraging and supportive comments about my upcoming trip! Yes, I'm planning on keeping the PEG tube in and if I need it, it's there. If not, oh well. I've had it in since February so I'm pretty used to it by now.

Did you feel that your tube came out to early? Were you eating w/o any difficulty about 4 months post treatments? My oncologist said that most of his patients leave in their tubes for about 3-4 months post treatment. I'm okay with that!

Thanks for the warning about the sun. I've already have 1 squamous cell carcinoma and multiple basal cell carcinomas removed from various areas of my body, so I am very cautious about sun exposure. Somebody else had told me about the sun exposure and radiation. Also my arm and leg where I had grafting done. I was told that both sites should be covered up from any sun exposure for a year. When an oncology nurse told me at the beginning of this journey that I wouldn't really feel back to "normal" for a year, I didn't believe her. Now I do!!!

Posted By: gmcraft Re: After Radiation treatment questions - 07-09-2018 09:05 PM
I just want to mention that when putting lotion/sunscreen, make sure you pay extra attention to where there are folds in the skin, e.g. in the neck where we bend our head. Don’t miss those places.
Posted By: DeniseG Re: After Radiation treatment questions - 07-09-2018 10:06 PM
Hi Kristen, I am going to say that it was at least 5 weeks to where I didn't need anything for pain. My areas of pain were where the radiation was directed to on my tongue and the back of my throat, so swallowing was a problem. I think the back of my throat is still irritated because the mucous is still there. The tongue feels ok except when anything hot, spicy, tart, acidic or sharp hits it in the treated area. Even if you are not eating or drinking much, you might go ahead and get the magic mouthwash filled to be more comfortable now. Just swish it around and either swallow or spit. I really didn't have any problems with speech unless it was just too painful to talk during treatment. So, no, I did not have to do therapy. I do find that the dryness is a factor in speech. With no saliva, if I talk too much or have a long conversation with someone, I really need to have a drink handy.
Posted By: Linda Linch Re: After Radiation treatment questions - 07-09-2018 10:45 PM
Hi Kristen S!
Glad to hear something helped....we need everything we can get! I’ll be so glad when my sores are completely gone and I have more energy. I’m not a sit around the house type of gal. It keeps me feeling positive when I get the gloomies. Ran into a distant family member whose dad was treated 8 years ago. He said he dad was riding motorcycles on Pike’s Peak today, which made me really happy.
Posted By: Kristen S Re: After Radiation treatment questions - 07-09-2018 10:53 PM
Thank you for the advice- will do!!!
Posted By: Kristen S Re: After Radiation treatment questions - 07-09-2018 10:59 PM
Hi Denise- good advice on the mouthwash. I'll get it refilled and start using again. I'm at the point now where I'm only taking ibuprofen during the day and then before bed I take the oxycodone.

My speech is affected now because when I start to talk, mucus starts flowing out!! I also find that it hurts the tongue to talk. In time....

I actually woke up today and felt great! I've accomplished more today than I have in a week. But I'm starting to slow down because I don't want to overdo it. I'm enjoying this energy but will be cautious.

Your advice has been so valuable- thank you sooo much for answering my questions!!!
Posted By: Kristen S Re: After Radiation treatment questions - 07-09-2018 11:02 PM
Hi Linda- great news about your distant family members Dad- good for him!

I woke up today feeling so energized- I couldn't believe it. Like, back to normal. I was pretty busy this morning doing chores but decided to slow down a bit this afternoon. I don't want to burn myself out. I know what you mean about being on the go. I'm usually all over the place! That's actually one lesson I've learned from this experience is to slow down a bit and spend more quality time with family and friends. I was spreading myself too thin before.

We'll get there in the healing process!!!!
Posted By: KristenS Re: After Radiation treatment questions - 07-10-2018 03:17 AM
[quote=Kristen S]Hello to the other Kristen S!

Thanks for the encouraging and supportive comments about my upcoming trip! Yes, I'm planning on keeping the PEG tube in and if I need it, it's there. If not, oh well. I've had it in since February so I'm pretty used to it by now.

Did you feel that your tube came out to early? Were you eating w/o any difficulty about 4 months post treatments? My oncologist said that most of his patients leave in their tubes for about 3-4 months post treatment. I'm okay with that!

Thanks for the warning about the sun. I've already have 1 squamous cell carcinoma and multiple basal cell carcinomas removed from various areas of my body, so I am very cautious about sun exposure. Somebody else had told me about the sun exposure and radiation. Also my arm and leg where I had grafting done. I was told that both sites should be covered up from any sun exposure for a year. When an oncology nurse told me at the beginning of this journey that I wouldn't really feel back to "normal" for a year, I didn't believe her. Now I do!!!

[/quote]

I'm pretty sure I was still having some difficulty with calorie intake, but I have food issues anyway. I was back to close enough to normal for me, which is probably not where anyone ought to be. laugh Taste was still a big problem, and spices and mint and stuff burned like crazy (still do). I was taking in enough food by mouth that I wasn't using the tube, and that was the main thing. And ... given my luck with surgeons ... I was having issues with the doctor who did my PEG (it needed replacing at one point, due to severe pain, and he wouldn't do anything! had to go to a different surgeon in the same practice, who had me in the hospital within the hour to get it fixed, sigh) ... so for me, the sooner I got it out, the safer I felt. Otherwise, no, hurrying is not something I'd recommend. And even then, it didn't heal correctly after the removal, and I couldn't get them to listen. The surgeon who did my chemo port took a look at it for me, and could immediately tell what was wrong and how to fix it, in her office, in about five minutes, and then it started healing just fine. I've been through some truly odd situations. So ... there's another weird bit of advice ... if for some reason you do end up removing it before your trip, give it time to HEAL before you travel. Otherwise, keep it till after the trip, for sure. Usually the healing is a piece of cake, but every now and then one of us gets something wonky. (Mine had a thing called granulation, which is actually not all that rare, and it was easy for me to search and find out that's what was going on, which is why it was so easy for the other surgeon to recognize and fix quickly ... but it had to be caught before it could be fixed. Not dangerous, just annoying.)

'Normal' becomes an entirely new word ... but you'll get there, and you'll find it, and it'll be good. I love your spunk, that's for sure. Attitude and willingness has a LOT to do with healing (so long as you take those breaks! LOL). I'm impressed you can do as much as you can ... I was given orders to be a couch potato while I had the tube in. And then, as I was getting to feeling better, nearly a year after I got the darn thing out ... I fell and broke my shoulder and had to be a couch potato all over again! (Can't put a cast on a shoulder, just put an arm in a sling and not move.) However, during the cancer years and the recovery years (and the broken shoulder season) I did manage to attend enough of my tae kwon do lessons to continue earning rank, and everyone cheered when I got my first stripe black belt. I *know* they passed me partly on spunk, since I was kind of fragile and they didn't go at me as hard as they would some of the other folks, but it was still earned, and it was one of the things that kept me going. Just NOT during the PEG tube season. And not when I was having to sit for six weeks with the darn shoulder.

That said, all my scout groups have me under strict orders not to break any more bones or come down with any more strange illnesses or allergies, because it always seems to happen when we have a trip planned. smile I am a walking Murphy's Law, I think... may your luck be better than mine! (Maybe since we have the same name, the odds balance and you get the good side of Murphy? I can hope!)
Posted By: Kristen S Re: After Radiation treatment questions - 07-10-2018 11:51 PM
Okay- question to all of you that are so good about posting back. I REALLY do appreciate ALL of your responses!!!

My native tongue just hurts. I don't have any ulcers on top or on the side and I'm wondering if this happened to you. I'm thinking that when I'm sleeping, I may be biting my tongue. Or, have done the biting damage prior to radiation and it just hasn't healed. Anybody else experience something similar? I'm not in a high degree of pain (ibuprofen during the day and then an oxycodone before bed and sometimes in the middle of the night) but just describe it as an ache and annoyance. Can anybody relate?
When I had my PET scan done prior to rads, RO said that he didn't see any new cancer on my native tongue. When I had a CT scan done about Week 5 of rads, again RO said that my native tongue looks good. Of course, I was SUPER worried about another lesion but he said no. Whew....that was a relief!

Week 3 post rads is today!!! Feeling pretty good for 2 days in a row now. Getting out of the house, driving around and have more energy. I'm definitely spreading my day out though as I don't want to hit the wall and crash!
Posted By: Kristen S Re: After Radiation treatment questions - 07-11-2018 12:07 AM
Hello Kristen S!!

I've had some issues w/ my PEG tube as well but it seems to be doing okay for the moment. And since it's doing okay, I'm making sure that I really take care of it. Around Week 5 or 6 of radiation, it started to hurt under the skin. I couldn't even sit up straight w/o it aching. The surgeon that put it in at my hemiglossectomy appointment is about 45-50 mins away from my home. I did go down and have the nurses look at it and they were clueless!! They thought that maybe it was infected and I should be on antibiotics. Or maybe they should change it out for another one. But at that time, I hadn't even finished rads and didn't want anymore treatment. I ended up seeing a GI specialist at the hospital where I did my radiation treatments (about 30 mins away from home) and he said it was fine. He ended trimming the length of my tube. For some odd reason, the discomfort went away on its own. I too have had the granulation issue. The surgeon that did the hemiglossectomy uses a silver nitrate gel. His nurse just rubbed it around the entry and the tissue sloughed off. My granulation came back again but then disappeared. It's starting to come back a third time but I'm just keeping an eye on it. I'm telling myself that my tummy wants the PEG tube out of there!! Apparently the granulation is a sign of healing.
I never had anybody tell me to be a couch potato w/ the PEG. Holy moly! I've been doing housework, gardening, yoga (simple stretches!), walking, laundry, etc.

Sorry to hear about your shoulder surgery! As my Mom would say, "if it's not snakes, it's alligators!"

First stripe black belt??!!! Awesome!!!
Posted By: ChristineB Re: After Radiation treatment questions - 07-11-2018 04:14 AM
To elaborate more on KristenS's granulation comments.... Granulation is something almost every feeding tube user will go thru from time to time. It can be very, VERY painful and uncomfortable. The granulation is a sign the patient is overdoing it. When someone has a feeding tube all kinds of things can affect it and its placement. Complications can arise if the patients is not careful while they have a tube. Feeding tube users do not usually have to stay put on the couch unless they have other issues going on. Things not to do with a feeding tube.... lift anything over about 25 pounds, strenuous exercises, swimming, soaking in a hot tub or bathtub, scuba diving, any activity that requires heavy use of abdominal muscles like rock climbing or gymnastics. Regular housework is ok, same with gardening, walking, laundry, etc. Just be careful not to carry heavy laundry baskets or lean the baskets against your stomach. For further feeding tube advice, you can talk this subject over with your gastro doc.

Feeding tube users should use a drain sponge (a 4"x4" gauze bad that has a cut on one side) at the tube site between their skin and the plunger disc. If the patient has granulation ask their doc for a prescription for silver sulfadine cream. Use a q-tip and place a very thin layer of silver sulfadine cream around the feeding tube site then cover with a drain sponge. The silver sulfadine cream should very thin where you can slightly see thru it, do not rub it in, allow it to soak in. Change the drain sponge daily after showering.

Hope this helps!
Posted By: gmcraft Re: After Radiation treatment questions - 07-11-2018 12:50 PM
Just to add to Christine’s info about granulation, when cleaning the insertion site, don’t ever rub it, just dab at it to clean it. My husband had granulation twice over the course of two and a half years, each time the silver sulfadine did its work.
Posted By: KristenS Re: After Radiation treatment questions - 07-11-2018 03:31 PM
[quote=ChristineB]To elaborate more on KristenS's granulation comments.... Granulation is something almost every feeding tube user will go thru from time to time. It can be very, VERY painful and uncomfortable. The granulation is a sign the patient is overdoing it. When someone has a feeding tube all kinds of things can affect it and its placement. Complications can arise if the patients is not careful while they have a tube. Feeding tube users do not usually have to stay put on the couch unless they have other issues going on. Things not to do with a feeding tube.... lift anything over about 25 pounds, strenuous exercises, swimming, soaking in a hot tub or bathtub, scuba diving, any activity that requires heavy use of abdominal muscles like rock climbing or gymnastics. Regular housework is ok, same with gardening, walking, laundry, etc. Just be careful not to carry heavy laundry baskets or lean the baskets against your stomach. For further feeding tube advice, you can talk this subject over with your gastro doc.

Feeding tube users should use a drain sponge (a 4"x4" gauze bad that has a cut on one side) at the tube site between their skin and the plunger disc. If the patient has granulation ask their doc for a prescription for silver sulfadine cream. Use a q-tip and place a very thin layer of silver sulfadine cream around the feeding tube site then cover with a drain sponge. The silver sulfadine cream should very thin where you can slightly see thru it, do not rub it in, allow it to soak in. Change the drain sponge daily after showering.

Hope this helps![/quote]

This DOES help. Oddly, though, I wasn't doing anything at all. I was doing precisely what I was told, being a couch potato. (I was told to do that so I wouldn't jar the PEG loose. Maybe they were being too cautious in their advice.) I was doing sponge baths and very little housework and ... well ... going out of my mind with inactivity. And my gastro doc turned out to be one of my 'idiots' on my list now, so that probably explains a lot. He didn't care that he was sending me home in truly excruciating pain. (The replacement done by the other doctor was a piece of cake, only kept me in the hospital overnight just in case there was a complication.) Anyway, when it was finally removed, I noticed the granulation start ... hadn't seen anything like it till that point, but Google was my friend on that one to at least identify the issue. And then, one quick treatment in the chemo port surgeon's office, and she made a follow-up for the next week for just in case ... but by then it was well on its way to healing. I guess I got lucky that it didn't cause pain... I did NOT know about that. Thank you, Christine, for letting me know that there's one bullet I did dodge in this whole crazy list of doctor screw-ups I'm accruing! (At least it gives me anecdotes to share if someone needs them, LOL.)

Of course, now you've mentioned pain, I wonder if there was some unnoticed granulation or something that caused my issue in the first place where it needed replaced. The second doc thought it had gotten misaligned and that's why he thought just resetting the whole thing would be best, but who knows? I was in too much pain to know, but I didn't SEE anything obviously wrong. Hm. Probably a different kind of pain altogether.

Well, I've learned something new today ... can I go back to bed now? laugh
Posted By: Kristen S Re: After Radiation treatment questions - 07-11-2018 04:41 PM
Thanks for the reminder- will do!!
Posted By: ChristineB Re: After Radiation treatment questions - 07-11-2018 05:39 PM
KristenS... Yes, a feeding tube can definitely become dislodged. But it takes some doing, it wouldnt happen from washing dishes or vacuuming. I have had this happen while I was hospitalized for something else. I also remember maybe 2 or 3 others over the years going thru theirs being dislodged. My tube was placed a while ago so it was pretty well set and should NOT have an issue when I was laying in a hospital bed doing absolutely nothing but sleeping. Anyway, one day I had a brand new doc overseeing my care. She proceeded to press firmly around on my abdomen. I was half asleep so didnt realize what was going right away. I immediately told her "be careful, I have a feeding tube" and she stopped her abdomen exam. Well, just my luck... she had already pushed way too hard on the wrong spot and my feeding tube became dislodged and settled itself as embedded in my abdominal wall. You would definitely know if this happened to you. That was some of the very worst excruciating pain Ive ever gone thru.. especially when the student nurse was trying to force feed me thru the tube. Nothing would go in and everytime she pushed with all her might I screamed in agony due to it feeling like I was being stabbed by a knife. That one succeeded in creating a medical emergency where after telling every single medical professional who walked into my room for the next 3 days that I had something very seriously wrong. Not one person took my complaints seriously until I told the one attending doc .... " I wasnt just an average, uninformed patient, I had been part of the OCF forum for years and understood feeding tubes better than he did. I insist on getting a CT, Xray or MRI immediately or I will begin seeking legal representation for neglect." Well the test came back and showed the issues which could have turned into a life threatening problem if left another day or 2. I had surgery to remove the embedded tube and replace it with a different kind of feeding tube (J-G tube). For several weeks I had a special bag attached to the one port of my tube to drain any fluids from inside my abdomen. NOT fun at all!!!!! Of course thats just how things go for me, just remember everybody's different.. very, very few other patients will ever experience anything like that.
Posted By: KristenS Re: After Radiation treatment questions - 07-11-2018 07:33 PM
[quote=ChristineB]KristenS... Yes, a feeding tube can definitely become dislodged. But it takes some doing, it wouldnt happen from washing dishes or vacuuming. I have had this happen while I was hospitalized for something else. I also remember maybe 2 or 3 others over the years going thru theirs being dislodged. My tube was placed a while ago so it was pretty well set and should NOT have an issue when I was laying in a hospital bed doing absolutely nothing but sleeping. Anyway, one day I had a brand new doc overseeing my care. She proceeded to press firmly around on my abdomen. I was half asleep so didnt realize what was going right away. I immediately told her "be careful, I have a feeding tube" and she stopped her abdomen exam. Well, just my luck... she had already pushed way too hard on the wrong spot and my feeding tube became dislodged and settled itself as embedded in my abdominal wall. You would definitely know if this happened to you. That was some of the very worst excruciating pain Ive ever gone thru.. especially when the student nurse was trying to force feed me thru the tube. Nothing would go in and everytime she pushed with all her might I screamed in agony due to it feeling like I was being stabbed by a knife. That one succeeded in creating a medical emergency where after telling every single medical professional who walked into my room for the next 3 days that I had something very seriously wrong. Not one person took my complaints seriously until I told the one attending doc .... " I wasnt just an average, uninformed patient, I had been part of the OCF forum for years and understood feeding tubes better than he did. I insist on getting a CT, Xray or MRI immediately or I will begin seeking legal representation for neglect." Well the test came back and showed the issues which could have turned into a life threatening problem if left another day or 2. I had surgery to remove the embedded tube and replace it with a different kind of feeding tube (J-G tube). For several weeks I had a special bag attached to the one port of my tube to drain any fluids from inside my abdomen. NOT fun at all!!!!! Of course thats just how things go for me, just remember everybody's different.. very, very few other patients will ever experience anything like that. [/quote]

Oh my gosh! That's terrifying!

I may never know what happened, or what was really wrong. There's an x-ray or something on file someplace, but I sure don't recall what it showed. i just know that the replacement made it better, and the pain was unbelievably bad. (And this from the person who didn't go to the ER with the broken shoulder because I didn't want to wait forever... waited till the next day to see a proper specialist. Of course, I also thought I'd merely dislocated it, sigh.) I do NOT tolerate pain well, but I can do stoic if I must and I know when not to do stoic ... the tube was beyond acceptable and into "Kill me now, please."

But it sure sounds like I was misinformed from the beginning about acceptable activity levels. That's a pity, because being more active in the early weeks would have helped keep my spirits up.
Posted By: Kristen S Re: After Radiation treatment questions - 07-11-2018 08:18 PM
Another question for you guys...did anybody use the powder Glutasolve? It's a glutamine powder that you add to a liquid and drink. You can also add to soft foods and eat it. My dietitian has recommended it and I've been using it for almost 2 weeks now but honestly can't say if it's helping or not?! She said that it would help my mouth to heal.

Also, I threw out a question about my native tongue just hurting. I think I may be biting it at night but not sure. It doesn't have an ulcer on it. Did this happen to anybody else? The discomfort goes back to my surgery date but the surgeon said not to worry about it. I had my DDS look at it before radiation started and he thinks I may be biting it when I'm sleeping. Well, after my radiation treatments, this is the area that's causing me the most discomfort! It's frustrating! Anybody else relate to this?!
Posted By: Linda Linch Re: After Radiation treatment questions - 07-11-2018 08:25 PM
I used something called Helios that the doc suggested. It contains Glutamine and sounds similar to the Glocosolve Not sure if it’s done much or not as well. I Also have tried Juven that Paul B recommended on here.

Last night I was lying in bed and had a sort of mouth spasm and bit my tongue as I was falling asleep and it hurt like fire! Drew a tiny bit of blood even. Feels ok today but it was totally uncontrolled. So I can see where that could happen!

Linda
Posted By: Vicky1 Re: After Radiation treatment questions - 07-12-2018 12:04 AM
Dad drinks Juven for healing after his surgery. According to the makers 2 packets a day is clinically proven to aide healing of bedsores, burns, non-healing wounds in diabetics and other injuries. It is quite expensive- $25 for 8 packets at Walgreens, but it does seem to help. It's very strongly orange flavored. They make a unflavored and a berry flavored. The store I buy them at didn't have unflavored and I noticed the berry one doesn't contain collagen.
Posted By: PaulB Re: After Radiation treatment questions - 07-13-2018 12:32 AM
Vicky1,

I received Juven for free at my radiation center, a few years back though. It’s worth a shot to ask one of your doctors such as radiation oncologist, oncologist, ENT, other support staff like nurses, SLP’s, if they offer such items for free or similar type or even have discount coupons, which I’ve used for glucerna when I didn’t get for free being tube dependent, at the time. I think their made by some of the same company’s, maybe Abbott. They may offer discounts on their webpage, if you check. There is another head and neck cancer support group, cancer alliance, that I heard offers protein drinks that were donated, but maybe they have Juven too.,

I hope this helps, and good luck!!
Posted By: ChristineB Re: After Radiation treatment questions - 07-13-2018 10:45 AM
To elaborate on Pauls suggestions...Ive always found nutritionists and nurses can be a great resource to help patients with a few samples or even a case of formula. It doesnt hurt to ask, maybe you will be able to pick up a few cans or cardboard boxes. Many large companies have programs designed to aid needy patients. Years ago I was able to get 12 cases delivered to my home for no cost simply by asking and my nutritionist filled out a request form. Im sorry but that was over 10 years ago and Im not able to remember which company did the give always. Abbott should be one of the companies that offer cases of their products.
Posted By: Kristen S Re: After Radiation treatment questions - 07-15-2018 07:44 PM
Okay another question for you guys...I had a busy day yesterday. Not super physically active but just gone from the house a while to visit some family and friends. I did bring along my "liquid lunch" and supplements for the feeding tube. I was drinking water throughout the day. Came home tired and slept great. But today I am EXHAUSTED!! I can barely make it from upstairs to downstairs. Really focusing on rest and nutrition today. I'm almost 4 weeks out of rads. Is this normal? Did I overdo it yesterday? Am I just having an off day?
Bummed that I feel this way. I feel like I'm stepping back in progress instead of accelerating!
Posted By: gmcraft Re: After Radiation treatment questions - 07-15-2018 08:12 PM
It really takes a while to build up one’s energy after treatment. When my husband was 8 weeks out, when we went for a walk, I always planned the route so that we would come on a bench at some point and he would be able to rest.
Posted By: Linda Linch Re: After Radiation treatment questions - 07-15-2018 08:25 PM
Kristen,

This happens to me too. In fact I’m in and out of bed today just feeling so tired. I’m also coming off my 12mg Fentanyl patch for th last few days so I’m not sure if that’s a factor. Take a rest day and see how you feel tomorrow. I know how frustrating it is when you just want to go and do.

Linda
Posted By: Kristen S Re: After Radiation treatment questions - 07-15-2018 11:27 PM
It sure does-thanks for the reply!
Posted By: Kristen S Re: After Radiation treatment questions - 07-15-2018 11:30 PM
Hi Linda- I'm starting to feel a little bit better now that the day has progressed. Mornings tend to be hard! Perhaps the coming off the patch has an effect for you- I wouldn't see why it wouldn't as your body is in a transition.I will be taking it pretty easy for the rest of the day. I just can't sit on the couch ALL day. Have to do something. Cleaning the kitchen- lucky me!
Posted By: KristenS Re: After Radiation treatment questions - 07-16-2018 12:23 AM
If I have a big day planned, I automatically plan a rest day after, if I can. I still have other health issues, of course, but YES you can still be that tired. You're not only healing but trying to build back reserves, and you don't have any reserves yet ... so your body doesn't have any spares to pull from. So ... might have overdone it, might have done just enough, but you still need some time to recover. It's okay. It gets better over time, slowly, and you WILL see improvement ... but you see it better in retrospect, when you realize you just aren't as tired as you used to be.
Posted By: Kristen S Re: After Radiation treatment questions - 07-16-2018 01:40 AM
Thanks KristenS! I know that I need to be more patient. It's just so hard when you feel so good one day and then not so good the next. It's frustrating! I feel as if I've given this cancer enough time to wreck havoc on my body. It's done it's damage and I am rebounding. Just not fast enough....
Posted By: Kristen S Re: After Radiation treatment questions - 07-18-2018 04:00 AM
Another question to gauge health progress. 4 weeks out of rads and today was a weird day. Tired for morning and afternoon (took 2 naps) but had a little more energy in evening. But mid-evening, the roof of my mouth started itching REALLY bad and my tongue and throat were sore. Sore enough to take an oxycodone- hadn't needed one at all today until now.
When did others start to notice the pain go away? Does anybody else have the itchy feeling?! I am on an anti-fungal med. Wondering if the RO needs to up the dosage on it?

Also, for those of us that are still working, when did you head back to work? I know the answers will vary widely depending on your job, but was curious.

Thanks!!
Posted By: KristenS Re: After Radiation treatment questions - 07-18-2018 04:00 PM
Well, I'm a homeschooler and a Scout leader, so my 'work' (and it IS work!) is at least seasonal. I didn't do any of the summer volunteer bits, of course. (My treatments were February and March, but had the feeding tube till June.) Eased into getting my strength back up. I *think* I started tae kwon do back that fall, because I have this vague memory of testing in November, which means I must have worked pretty hard during the fall ... I was high rank by then. I think I was well enough to go to meetings when we started back up for the school year (which around here is beginning of August), but I have two co-leaders for my girls, so they helped me a LOT, and I wasn't full leadership with the guys that year, just observing, so no major responsibilities there. (My job shifted with the boys during my cancer ... my son aged up, and I was trying to hold together my Pack from a distance while my son was learning how the Troop worked ... that was a disaster on many levels, but not pertinent here.) Because I did have support, things went pretty well, but I was able to take off as needed. Things were going well by the following spring, enough that we were going to take our girls on a great camping trip ... and that's the one that, two days before we were to leave, I fell and broke my shoulder. Yup. I live my life by Murphy's Law. But because we do have enough leaders, they carried on without me, and I spent another whole summer recuperating. Sigh. And then kicked butt in tae kwon do at the next winter testing, LOL. I may be a coward about pain, but not a whole lot actually fazes me in class anymore! (This highly amuses my instructors, as they can clearly recall my very first white belt testing, where I ran off the floor in tears because we had to spar and I don't like to hit people. Still don't.)

I'm five years out from my first diagnosis (which was mere surgery and none of the nasty treatments), and this is the first summer I was able to go to day camp as a volunteer again. It was hard, but I LOVED IT. I probably still wasn't fully ready for the energy drain (it is HOT here in Alabama, even in June), but I LOVED IT. I'm glad I waited till I was closer to ready. But the other volunteer events, like a February indoor event I work at, I was doing as soon as I was able, and since it's a sit-down skill I teach there (pocketknives), it was great. (And the other leaders keep a close eye on me to make sure I don't push me too hard.) I also went to a spring (ha!) training camp weekend series for Boy Scout leaders, ill-advisedly, and that was pretty cool too. However, my doctor is pretty peeved with me about that one, because it turned out that first weekend got below freezing and was raining besides ... the entire time! (And yes, we camped outdoors.) Someone tipped me off to the weather report, so I at least had time to scramble for a properly rated sleeping bag and gear before I went, but we also had been misled about the physical requirements, and my doctor and I both agreed that if we had known, he would NOT have signed off on the health form. Oops. But I survived, and I am actually very proud of myself, both for making it through AND for knowing, "This is my limit, and this is the point where I will have to tell myself to walk away and try again another year." (If it hadn't cost so much, I would have done that straight up.) The second weekend was rainy but not freezing, which was better.

Those anecdotes may have nothing to do with what your goals are ... but I use them to emphasize knowing WHAT you are aiming to do, and WHAT your personal limits are. I knew what I was trying to do, and how I could, or couldn't, manage to achieve them. I had some seriously eye-opening moments during that pair of weekends about lack of disability accommodation, even when I'd requested help and they were doing all they could to help me ... because I hadn't realize how much accommodation I still needed, or what to ask for. (My being in the middle of the oral surgery nightmare meant I needed food accommodations, which they did their best for, but I hadn't realized how SLOW I got at eating, and on their schedule, that just didn't work. I know better for me now, and I know better for other folks now too. Things like that. I needed calories to cope with the physical demands, and I couldn't get them.) My health situation may be more complicated than yours ... I also deal with panic disorder, migraines, and other stuff, some of which I had before the cancer and some of which came after (I think my body just freaked out on me after I broke my shoulder ... it had had enough, LOL) ... so I've learned to keep note of where I am in my coping phase, and when to stop and take a nap or six. You may not have to go that far, and certainly not five years out, I would hope ... but self-awareness is always a good strategy.

Oh, and I know, etymologically, what the name 'Kristen' is supposed to mean ... but I'm pretty sure it also means 'stubborn' and 'refuses to give up when saner people would' in some obscure language somewhere ... seems to go with every Kristen I've ever met. laugh So keep on being YOU, but be sure you know what your LIMITS are, so you can be the safest, best you that you can be! Just a tip from one Kristen to another ... Kristens unite! smile
Posted By: Kristen S Re: After Radiation treatment questions - 07-21-2018 06:47 PM
Thanks Kristen for your information and experiences. Please tell me more about your OC. You say that your first diagnosis was just surgery? And then did the OC come back again? What happened after that?

I had my 4 week post rads visit w/ my oncologist and he was very pleased with my healing. I truly give all the credit to having a VitaMix and using my feeding tube as much as I have. Good nutrition has gotten me through. I also met with my speech pathologist and she said it's time to start eating more orally. It's something I've actually avoided because it just doesn't feel good. Although I have the MM, lidocaine gel and even lollipops to numb my mouth, it doesn't feel good. Food gets stuck below my reconstruction area, on top of the reconstructed tongue and I don't have the muscle function to move it around. I know that will come from me working on it, but it's not fun in the interim! Something I have to get used to.

Yes, the name Kristen does mean stubborn and refuses to give up! I can't tell you how many people are telling me to slow down! They are also reminding me of all that I've accomplished in such a short amount of time.

We cancer survivors are amazing! My oncology nurse said the only worse cancer to bounce back from is anal. I consider myself lucky!!!
Posted By: DeniseG Re: After Radiation treatment questions - 07-21-2018 11:44 PM
Kristen, I think you may have some ups and downs for awhile. I'm over two months out and the week before last I was really tired and had my skin and scalp hurt. I tried to eat more protein and vitamins and am feeling more energetic. So I don't think it will be all of a sudden you feel great, give it time, as Christine (I think) said, each week of rads = one month recovery. I'm planning on 6 months to feeling almost normal and one year to see how much of my taste will come back.
Posted By: ChristineB Re: After Radiation treatment questions - 07-22-2018 03:50 AM
Heres some of the things Ive learned over the years about the recovery phase (Of course, all patients are different and will experience everything in their own unique way. Some issues bother some patients more than others but then when comparing yourself to others, there are far too many variables to make an accurate comparison)... First,@ Denise you are correct. My doc told me one month for every week of rads when I was complaining to him when I wasnt back to my normal self a couple months post rads. The recovery phase can be VERY frustrating. Patients can never recover as fast as they think they should...NOT EVER! A complete recovery for those who had rads w/ chemo for OC will take a full 2 years. I know it sounds like its forever! The time goes quickly with most patients feeling pretty good about 8-12 months post rads. Patients can still expect to see (usually only slight) improvements in their sense of taste and saliva up to about the 2 year post rads mark. The ups and downs and setbacks can become annoying but soon you will be able to clearly see how much progress you have made. The setbacks will become less and less the further you get past when you finished rads.

Other things that can get annoying to patients during recovery is their sense of taste will disappear when eating. This can get annoying when what they are eating loses its flavor after only one or 2 bites. Around a year out many will have the majority of their taste returned. Patients can still expect to see (usually only slight) improvements in their sense of taste and saliva up to about the 2 year post rads mark. One thing to ask your doc about when they have you get bloodwork done during your recovery is if your thyroid numbers are being checked. If not, they should be! Most patients who have rads to their head and neck areas will run into thyroid issues. It hit me but not for a few years post rads. After everything OC patients go thru having their thyroid not functioning properly usually isnt a big deal. Thyroid levels being off just requires patients to take one tiny pill a day. To me its not a big deal considering everything else everyone here has been thru.

@ Denise, you may want to ask your doc about your thyroid levels next time you have bloodwork ordered. Being about 2 months post rads is still pretty much the beginning of your recovery phase. Im sure you are able to notice some improvements and will continue to do so. Fatigue was one thing that really got to me! No matter how much I slept, I was still exhausted and could go right back to sleep. Fatigue is also a sign of your thyroid not functioning properly.

Protein helps to speed healing. Ask your doc if its ok to add some whey protein powder to your diet. Theres an unflavored one that can be added to shakes, soup, smoothies, even to the formula for feeding tube users (easiest for those who use the feeding pump). I think its Bob's Red Mill brand that I get at my local wegmans, it comes in a light green bag in the organic dept.

Other than hitting your daily intake minimums, avoiding crowded public places, staying away from sick people (elderly and young children seem to always get sick), frequent hand washing, getting the best balanced diet that you are able to consume, resting when tired, managing pain levels, PT if necessary, and following doctors orders, unfortunately theres really not much that can help get you past the recovery phase any quicker. It takes time... wayyyy too much time!!! Ive picked that up from all the OC patients Ive been in contact with over the years. We all can agree the whole ordeal from diagnosis til we feel we're back to our original selves (as much as it is possible) seems to take an eternity. On the bright side, we all are in this together and we all understand where you are coming from. At least the worst of everything is behind you smile Hang in there!!!



Posted By: KristenS Re: After Radiation treatment questions - 07-22-2018 06:13 AM
Amen to all that.

Christine is right! (She's a variant of a Kristen too, remember, so she has the stubborn patience to keep us all on track with our nutrition and make us be safe with our recoveries!!!)

And yeah, my thyroid went out too. My radiation doctor had the nerve to blame it on me, as if he thought I was going to try to blame it on him and he wanted to get there first. He said it wouldn't have happened if my thyroid hadn't been weak to start with ... I highly doubt that, but whatever, done is done. And it did impact energy levels a lot. I don't see a ton of improvement on the meds ... but I sure see a problem when I miss the meds! My B12 plummeted too, but that we think was related to another issue. So I get shots for that.

Kristen, you asked about my first and second diagnoses. The first one was May of whatever year that was, 2013 I think. It had taken all year for the doctors to figure out whatever it was, wasn't gonna heal, so the ENT said, "Let's do surgery, give it a fresh start to heal." Not sure if he was already thinking cancer but not telling us, or if he didn't know either. But he did have the sense to have it biopsied during the surgery while I was still out, so he was able to keep going and get clear margins ... and it took him several tries. I woke up to a lot less tongue than I'd expected, and the news that it was cancer ... which had NOT crossed our minds till that very minute.

However, we were pretty sure he'd gotten it all. He still wanted to do a neck dissection to check for lymph node spread, even though it wasn't indicated on any tests or scans. Not knowing better, I consented to it, and that was in August. All was clear. In December, a sore came back in pretty much the same spot we'd first operated on. Recurrence already. (I do still think he got all of it the first time, and it really was a recurrence. My mother is inclined to blame the surgeon for missing something. But we're talking dinky tiny cells, and blame in that case is futile.) So we did more surgery, and then all the doctors got together and decided chemo and radiation were the way to go, because that quick a recurrence can't possibly be a good thing. And I was scared, and there we were, and .... here I am. I still have more tongue left than some folks have after even one go-around, so I'm lucky in that regard, but the fatigue is still very real, and I still have to pace myself carefully.

Which is why I cheer you on to do things, but TOTALLY second everything Christine and others say about also not getting too ahead of yourself, because this stuff sneaks up and smacks us when we're not looking. We fall, we rest, we pick ourselves up and keep going. I was dealing with chronic health issues for over ten years before the cancer, so I'm used to being knocked on my butt and having to reset my expectations, though not to this level of severity (I was actually getting better before the cancer, sigh), but hopefully it's not something everybody already has life experience in. frown

Hope that was coherent. After midnight on a migraine day, but it's probably pretty close. smile
Posted By: Kristen S Re: After Radiation treatment questions - 07-23-2018 01:56 AM
Hi Denise- thanks for the reminder of healing. It's a very looooong process! My friend who is a retired oncology nurse said that I need to give myself a year to really feel back to normal. But the salivary and taste could take longer. We tend to run out of patience, don't we?!

I'm working on it!!

Glad you are feeling better. I'm Week 5 post rads and doing okay. Some days are giving me more energy and I'm loving that!
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