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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!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Jun 2007
Posts: 10,507
Likes: 6
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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.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2018
Posts: 45
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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!!!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Apr 2018
Posts: 51
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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.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
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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


Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection.
Now T1N1M0
Surgery 2/16/18 at UAB.
30 Proton Therapy Treatments
Cisplatin Chemotherapy
Joined: Mar 2018
Posts: 45
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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.....


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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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!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2018
Posts: 45
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 45
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!!





Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Mar 2018
Posts: 45
Contributing Member (25+ posts)
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Joined: Mar 2018
Posts: 45
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!!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Mar 2018
Posts: 45
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 45
Things WILL improve...hang in there! Unfortunately recovery goes really slow. Take it day by day. Have you finished your rads yet?


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
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