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Mom undergoing radiation #198470
06-07-2019 11:21 PM
06-07-2019 11:21 PM
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Chandana Offline OP
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Chandana  Offline OP
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Hi ,

My mom was diagnosed with squamous cell carcinoma of the tongue and underwent a surgery.
Now she is undergoing radiation therapy and is at the end of week 3.

She has severe mouth ulcers and nausea. The pain is getting bad and she is on liquid diet. Her doctor has given her steroid medication for the pain and has helped only a little .

I am seeking advice from this group to help her in anyway to get through this tough phase.She is 67 years old . It would be really helpful if she can hear some stories that are similar and how they were able to cope up with pain during and after the radiation treatment.
She still has 3 more weeks to go and is very worried how the next weeks would turn out .

How long would it take after the radiation ends for the mouth ulcers to heal ?

Please reply ...

-Chandana


Chandana
Re: Mom undergoing radiation [Re: Chandana] #198471
06-08-2019 03:19 AM
06-08-2019 03:19 AM
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ChristineB Offline

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Welcome to OCF, Chandana! Im very sorry to read about your mother!!! Shes lucky to have you!!! Around 3 weeks is when most oral cancer (OC) patients begin to feel lousy and the side effects start showing up.

Any changes of issues she needs to speak up and tell her doctor and nurses. This is especially true with the pain that many going thru rads will have. A fentanyl patch is a very good way to help most patients deal with their pain. Its easier to take than other pain meds as its a small patch that she would place in a different spot every 3 days (72 hours). Its very important if using the patch your mother reads and follows ALL directions!!! Never cut, bend, fold, rip, tear, puncture, or disrupt the patch in any way as it can cause the patch to give out too much of the medicine at once. No long hot showers or baths either while shes on it. Other than that its so much better at controlling pain but she still cold have occasional pain called "breakthru pain". For that she should be given another pain medication to take when she has bad pays with the pain. Most pain meds can be given in the liquid form too so this helps patients who are having mouth/swallowing issues. Ask the doc for zofran for nausea and have your mother take it around the clock for the nausea. Thats next to impossible to get ahead of once it begins. If necessary when a patient isnt able to keep anything, even the anti-nausea meds down, they probably would benefit from a suppository anti-nausea dose until the nausea is better controlled to go back to regular medications.

Your mom can also ask for a prescription to get magic mouthwash. Thats a rinse she would swish around in her mouth for about a minute before spitting it out, do NOT swallow it!!! This can be made of different combos. Mine was lidocain, maalox and benedryl. This will numb her mouth long enough (about 20 minutes to forty)so she can try to eat or brush her teeth. She should be rinsing her mouth at least 4x a day with a tsp baking soda, 1 tsp salt and a cup of warm water. This is the same rinse for about a minute and spit it out. The baking soda concotion helps the ph balance in her mouth and the salt helps with healing.

Intake is a HUGE problem for patients who are beginning to have alot of painful mouth sores. Its VERY important your mother take in at the very least 2500 calories and 48-64 oz of water every single day until she hits her first year anniversary of finishing rads. If you can encourage her to do more that will only help her to get thru it easier. What shes going thru burns an incredible amount of calories which show she is NOT getting the nutrients her body needs. This will so easily become a vicious cycle of playing "catch up" but the catch up never happens. One day only taking in 1000 calories thinking the next day they will take in extra to cover it... that tomorrow where they catch up never happens and before they realize it, they're 10 pounds lighter and feeling so much worse than they had the week before. The weight loss is a sure sign she isnt taking in enough every single day. The daily intake is the single most important thing to focus on and when nauseous its next to impossible to do the minimums, let alone keep enough fluids down. Make certain the doc and nurses know every single thing you have written and you can ask them about anything Ive written here if you'd like to.

If your mother is losing weight thats NOT good!!! Even obese patients are told not to lose weight. Losing weight when going thru rads can be very quick!!! I was amazed at losing 20 pounds in a week and didnt mind as I thought I had it to lose. The kind people here warned me about this I was too tired to pay much attention to anything besides sleeping.

Patients who struggle with their intake can get a feeding tube to help them to do better with their daily intake. A nasal tube is a fast, temporary solution that can be done right in the doctors office. Its not fun but it is necessary if a patient isnt able to do their daily intake. Its also very important for the patient to take sips of water many times a day to keep those swallowing muscles active. Believe it or not those muscles can and will very quickly forget how to finction and down the road relearning how to swallow is NOT an easy accomplishment. Your mother can also get extra hydration in the chemo lab a few times a week which will help her feel so much better very quickly. The doc needs to write an open prescription for fluids. Its amazing how much she will feel better when getting this done.

The water intake is soooo very important especially if doing chemo. If at all possible taking in extra fluids the day before, the day of and day after chemo. The extra water is needed to flush the poison out of her system to avoid kidney damage. If shes getting chemo and noticed any change in her hearing that must be reported immediately!!! Cisplatin is a very common chemo for this type of cancer and can cause permanent hearing loss.

Unfortunately rads is cumulative. It gets progressively more difficult as patients continue thru the treatments. Even after completing rads, it still continues working making patients feel pretty lousy for the first couple weeks after finishing. Most patients who finished rads find the recovery phase is NOT anything like what they expected. Its full of ups and downs with some setbacks and not one of us can ev er get well as quickly as we think. As far as how long the mouth sores hang around after rads ends, that will vary greatly for all patients. Ive seen anywhere from 3 weeks to 3 months after rads before patients notice their mouth actually feels better.

Theres a million and one more things I could tell you about this but I dont want to scare you or your mother. Rads is VERY hard for most of us but it definitely is doable!!! Patients can get depressed while going thru rads. Feeling so bad every single day can wreck havoc on a persons outlook and moods. Caregivers have a very difficult job to do and staying positive when they watch their loved one suffer is not easy at all, but it is very important to the patient. Many patients and caregivers as well will need anxiety meds for everything they are going thru. Its just another tool to get everyone thru some very difficult days.

Hang in there and dont worry... you now have us to help you and your mom. Best wishes!!!


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
Re: Mom undergoing radiation [Re: ChristineB] #198502
06-11-2019 10:41 PM
06-11-2019 10:41 PM
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Posts: 5
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Chandana Offline OP
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Chandana  Offline OP
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Thank you so so much Christine ! You are an angel to us ..
Talked to my mom about all this and she is getting some help from her doctor now ..
She has speech difficulties now because of mouth sores and ulcers ..Her doctor prescribed her some steroid medication for pain and it is helping a bit ..

She still has 2 and a half weeks to go ..She is planning to talk to her doctor if she is not able withstand the side effects to take a break from Rads ..
Really tough to see her go through this ..Support really helps ..

Thanks once again for sharing your story and all the tips and info ...


Chandana
Re: Mom undergoing radiation [Re: ChristineB] #198503
06-11-2019 11:10 PM
06-11-2019 11:10 PM
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Chandana Offline OP
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Chandana  Offline OP
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I also found this mouth wash on Amazon that has very good reviews .
The name is Prevention oncology mouth rinse .

Please let me know if anyone in this group has used and it’s helpful .


Chandana
Re: Mom undergoing radiation [Re: ChristineB] #198504
06-12-2019 12:11 PM
06-12-2019 12:11 PM
Joined: Apr 2019
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DavidDH Offline
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Dear Chandana and ChristineB,

Chandana, please follow the advice of ChristineB. I might suggest one other mouthwash that had some effect for me: turmeric - one teaspoon of turmeric and 1-2 cups of water. After swishing it around, your mother can swallow it, though it shouldn't happen more than a few times a day (reduces inflammation, allowing for intake, and some studies show that its ingredient curcumin can fight cancers). My doctor is Indian American and apparently turmeric is frequently used in India; plus, there is a lot of research and new grant monies for further testing.

And, yes, cisplatin can cause hearing loss. I had to buy hearing aids this week - and they are not cheap and are probably never covered by insurance! My oncologist believes that cisplatin was the right and most effective chemo med for me with the best chance of success. I won't know for a few months if my throat cancer is eradicated; if so, I'll be okay with everything, but if not, it will be a very bad day.

I still have my PEG feeding tube but am now eating solid foods at least twice a day and am about ready to get off of it. BUT, without the tube I would have lost at least 50 pounds - and I really don't have it to lose. I had a formula that kept my weight nearly the same for seven weeks of treatment. Please look into a tube immediately. Not pleasant getting it in but it makes a world of difference.

Take care! DavidDH


HPV base of tongue. Some in lymph nodes. Diagnosed 2/27/19. Seven-week treatment (3 chemo, 35 radiation) began April 1, concluded May 17.
Re: Mom undergoing radiation [Re: Chandana] #198507
06-12-2019 10:06 PM
06-12-2019 10:06 PM
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ChristineB Offline

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ChristineB  Offline

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Rads are NOT easy for anyone! Even those lucky few who sail right thru rads with barely any noticeable side effects have their own struggles. Unfortunately, rads is progressive. The further you go, the harder it gets. I too suffered thru rads thinking I could avoid doing some of the treatments.... NOPE!!! Towards the end, I was in such bad shape I lost my voice, could barely walk or even stand up without help. My doc took one look at me, never even looked in my mouth or checked my chart... sitting in a wheelchair barely able to lift my head or follow a conversation, I was admitted for malnutrition and dehydration. Guess what? Even being hospitalized didnt stop those rads from continuing... the techs came to get me anyway. I also thought I would just quit then but that wasnt allowed either. My nurse and son ganged up on me and said it wasnt happening that they wouldnt let me quit as they would not sit back and watch me die because I was having a hard time with rads. Somehow I finished all of my scheduled treatments, but only 2 of the chemo doses from being so badly affected by it. Ive been where your mom is and understand it all too well. I wouldnt wish OC or the horrendous barbaric treatments on my worst enemy. But!!! Even though it was some of the hardest days Ive ever been thru, I am alive today and living a different but very good life thanks to so many people helping to keep me on the right track.

As your moms caregiver, watching her going thru this and in pain must be so disheartening and upsetting to you. The following will help to turn this around and make her more comfortable... Bottom line on how to get her thru rads in the easiest way possible... focus on what is controllable! The better she does with her intake, the easier everything will be for her. Every single day she needs to take in at least 2500 calories and 48-64 oz of water... every day!!!! With mouth sores and struggling to swallow this is NOT easy to do. The magic mouthwash will help her alot!!! It will numb her mouth so the sores arent bothering her as much enabling her to eat. Her pain must get managed as quickly as possible to help her feel slightly better. I would definitely advise getting the prescription to get extra hydration too, then get her in there asap. Not taking in at least 48 oz daily will quickly sneak up on her. Dehydration makes patients feel absolutely horrible!!! The extra hydration will instantly boost her up after taking in a couple bags, she will walk out of there feeling so much better than when she first walked in.

Try to give her something to look forward to. Even minor things can mean alot to a patient who is struggling. In all of this dont forget to take good care of yourself as well. Being a caregiver is NOT easy!!! Try taking some time away just for you so you can catch your breath. Do something you enjoy like getting a manicure, going out to lunch with friends or something that will give you some much needed time to relax and unwind. If you have people who have offered their assistance maybe get someone to take your mom for treatments for a couple days a week. Im sure she would enjoy seeing a friend or other relative who she likes spending time with.

Hang in there!!! We're here to help you both.


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
Re: Mom undergoing radiation [Re: Chandana] #198510
06-13-2019 10:22 AM
06-13-2019 10:22 AM
Joined: Jun 2019
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Hazel Offline
"OCF across the pond"
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Hi Chandana
I am 62 and 10 month post radiotherapy for tonsil cancer. I too had ulcers and a radiation burn the full length of my tongue. I was prescribed gelclair which did alleviate some of the pain.i am in the UK so my treatment May have been slightly different. Once treatment finishes just remember the hard work really does start as we all recover at different rates. I found it was bettervto have an idea of what was going to be in front of me as opposed to blindly not knowing.

Hope this helps
Regards

Hazel

Last edited by gmcraft; 06-13-2019 12:24 PM. Reason: Removed info re personal blog

Diagnosed June 2018 T2N2NM0.H.P.V 16+
35 radiotherapy sessions V M A T
2 chemotherapy sessions Cisplatin
lives in the U.K.
14 Jan 2019 pet ct scan showed cancer free.
on going hospital visits for next 5 years.
Re: Mom undergoing radiation [Re: ChristineB] #198654
07-08-2019 11:38 AM
07-08-2019 11:38 AM
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Chandana Offline OP
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Chandana  Offline OP
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All / Christine ,

Need help and advise again .
My mom completed her Rads last week . It’s day 10 now and she is at her worst now .

Extremely fatigued, severe mucositis pain . Intake is a huge problem and she is suffering from severe constipation and getting medical help from hospital every 3 days for that .

I talked to her onco radiologist today and he said she should be completely fine in a week .

Please let me know what is realistic timeline ?

We are giving her soft foods and smoothies . Is there anything specific that will help her heal faster ?

Is constipation a common problem after radiation? Her doctor said it is unrelated ..

Any advise is greatly appreciated. I can see she is becoming helpless and depressed .


Chandana
Re: Mom undergoing radiation [Re: Chandana] #198655
07-08-2019 12:39 PM
07-08-2019 12:39 PM
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PaulB Offline
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PaulB  Offline
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Chandana,

I wish I could say that was true, but for myself I can’t say that for me. The effects from radiation can usually started to be felt at 10 days of treatment or the beginning of three weeks, which is the same. Different times the effects start and eventually accumulate. Sometimes they ease up, like thrush, if treated.

The effects from radiation continue working several weeks after radiation ceased, and sometimes that is at it worst. Actually, I once read, medical book, partial recovery can take just as long as your treatment. There is also short term recovery up to three months past treatment, and long term recovery longer is than three months. For myself, it took up to several years to partially recover some before other longer term issues bothered me more, such as osteoradionecrosis, Radiation Induced Brachial Plexopathy causing arm paralysis, but that’s after 5 radiation treatments, and 10 years in a small minority.

A balanced diet with adequate nurtririon, protein and hydration, test helps healing and sufficient energy, which goes by height and weight, amongst others. Does your mother see a dietician or nutritionists at the cancer center? They have helpful booklets too, and there are several books out there for people going through treatment or recovery. I had several on e-book, but lost then through the years. If you google them it may pop up. I think one was called, Easy to Eat, Easy to Swallow.

There are medication or otc products to help relieve constipatoon. Moving around more is beneficial.

The problem with helplessness and depression is commmon. It’s like one day you’re being seen by a handful or more medical staff, treatment, and the next day you’re home. Your mother may feel better when she even goes see the doctor? I did. There are medications for that, but I didn’t take them as I had a bad experience with antidepressants in the hospital, but that was me.

It takes time! Maybe up to two years or longer. I’m 10.5 years out, and still have a way to go as far as recovery.

Good luck, and I hope this helps.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Mom undergoing radiation [Re: Chandana] #198656
07-08-2019 02:57 PM
07-08-2019 02:57 PM
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Posts: 10,364
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ChristineB Offline

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I am so very sorry to hear your mother is suffering so much!!!! Hearing about your mother instantly takes me back 12 years to when I was newly out of rads and suffered some of the worst and most painful days of my life. Im going to be completely honest with you about what recovery really is like for most OC patients.

Unfortunately, the rad doctor saying your mother will be fine in a week is NOT true! Its not even a teeny tiny bit of a fib, its completely false!!! Im actually surprised to hear a doctor saying that to the caregiver of an OC patient! It was explained in great detail to me several years ago that patients need a month of recovery for every week of rads they go thru. Radiation continues to work for weeks after finishing radiation treatments. Almost all OC patients begin to struggle after the third or 4th week of their radiation treatments with each passing week more difficult than the last. The first 2-3 weeks after rads ends, are the hardest ones our of the entire thing. For most OC patients, right around 18-22 days after finishing rads they get up one day and feel slightly less crappy then they did when they went to bed. The next day is also a little easier for them. Sadly, most OC patients are so used to feeling lousy every day that they usually become resigned to expect thats just how it is now for them. They may not even notice that morning when they feel almost ok but it is very obvious they are not suffering so much.

A very general timeline for patients who have undergone surgery then rads 6-8 weeks later is as follows (for those who have chemo along with rads) ...

---- Right around 3 weeks after finishing rads the OC patient wakes up feeling a little more like how they were before the OC. They still have painful mouth sores and a long road to go before they are completely well again. At least when seeing your mom hit the first milestone you will be reassured that she will will improve and get better. Its so very frustrating for patients to see day after day of no progress. Make certain your mothers pain is kept under control by taking medicine around the clock when necessary. Ask the doc about magic mouthwash to help numb her mouth so the painful mouth sores dont hurt as much. The 3rd week post rads milestone is termed around here as "crawling out of the tunnel" . Almost all patients are overly fatigued and weak. They are dealing with thick gunky mucous that can be very difficult to get out of their throat. Some get a prescription from their doc for a portable suction machine which greatly helps alleviate the abundance of thick gunk. Also using a water pik on its lowest setting with warm water and a tablespoon of non-alcoholic mouthwash helps keep their mouths nice and clean to help the mouth sores. Attention should be paid to rinsing every single day with one cup of warm water, 1 tsp baking soda and 1 tsp salt. Patients should swish it around int heir mouths for a minute then spit it out. This helps maintain the ph balance and helps mouth sores to heal. Weight loss will usually continue as patients struggle every minute of the day with their intake. Nausea is common as is diarrhea and constipation. Whatever patients throw up must be replaced and put back in or they will become dehydrated. Patients within the first 3 weeks after rads often are upset by their lack of progress, weight loss, ability to eat and depression is common. Not one of us can ever recover as quickly as we think we should which further frustrates everyone as well. During my first 3 weeks after rads, I was hospitalized for malnutrition and dehydration... Im pretty sure this happened 3 times from about week 4 or 5 of rads and the first month after finishing. Losing 65 pounds in 2 months along with my strength and muscle tone so I was too weak to even stand up and walk. Significant weight loss further complicates how easily a patient will recover. Unless they are holding their weight by taking in at least 2500 calories and 48-64 oz of water every single day then that should be the absolute daily minimum they take in. If at all possible, taking in more will help them get thru rads and their recovery so much easier!!! After about the 2nd or 3rd week post rads patients who had lost their voice begin to get it back. Dont be surprised if one day your mom is doing great and the next shes in bed almost an entire day. Recovery is full of ups and downs with some setbacks thrown in as well. Focus on whats controllable like her intake and pain levels and in time she will improve. The better she does with intake, the better she will feel. If necessary get an open prescription for extra hydration from her doc so your mom can get extra fluids every other day. That really will help her significantly as dehydrated patients can suffer all kinds of pain and problems. Trust me... she does NOT want to go down that path like I did!!!!

---- About 4-6 weeks post rads, patients will one day notice their sense of taste that had been mostly nonexistent is starting to work again. This is usually more noticeable towards the 6th week post rads. They have slightly more energy and are noticing their mouth sores are improving too. A month or more after finishing rads, they arent as foggy minded and start having more and more easier days. The sense of taste after rads is fleeting!!! Often its only the first bite or 2 that will have any flavor. After weeks of all foods tasting like burnt over-salted cardboard its a nice surprise! Their sense of taste will come and go with things tasting ok for an hour, or 2 days or maybe even 2 weeks then they become the most disgusting flavor ever for a day or a week or more until it begins to taste ok again. Its all over the place with new favorite foods changing frequently. For many, anything canned even if low sodium still is over salted and spices (even very mild ones) are always overpoweringly bad even if substantially less is in the food. Patients need to experiment with what they can and cant taste with it changing so frequently. Buffet restaurants are great places patients who are relearning to eat again can try a wide variety ofd foods a teaspoon of it at a time. They do need to pay attention to what they're eating as anything spicy will probably not be able to be eaten yet. Even those patients who have always enjoyed extra spicy food will not be able to tolerate it anymore. Trying new foods with a big glass of regular milk or chocolate milk (400 calories a pint!!!) . Its still early in the eating again game so patients will see many more sense of taste improvements. Between 3-6 weeks post rads, patients find they suddenly stop having the thick gunky mucous one day to be replaced the next day with dry mouth. Having dry mouth is NOT fun at all!!!! Its so bad that the patients tongue will get "stuck" glued to the roof of their mouth and they're unable to pull it off without help from their fingers. This "water bottle carrying club" newest member will see small improvements in their saliva over the next year or more. It will come and go with improvements some have reported noticing right after they hit the 2 year post rads mark.

Unfortunately, OC patients have a very long road of recovery... definitely NOT 3 weeks as the doctor reported!!! It takes OC patients after rads 2 years until they are fully recovered and pretty much as well as they can ever expect to be again. Of course theres always exceptions and hearing 2 years for recovery can be quite a shock, its an honest assessment from someone who struggled every single day thru some of the worst days of my life along with about 75% of every other OC patient/survivor here. Theres only about 10% who sail right thru barely noticing any side effects. The other 15% are ones who probably didnt do very well with their intake or maybe they didnt bother to do what their doc told them they should do as they suffer the most with the worst of the side effects hitting them harder than most of us who are more like your mom. Sleeping with their head inclined and a humidifier helps with dry mouth, any sinus issues from rads and should be done always anyway if using a feeding tube. Plus patients should be sitting still for at least 30 minutes after a feeding ends to let their stomach settle.

--- For the next 2-6 months post rads, patients will steadily improve in all areas of their health as long as they are continuing to take in at least 2500 calories and 48-64 oz of water every single day. They slowly begin to have more energy and although they still do tire easily, its a definite improvement from where they had been the first few weeks post rads. By 6 months most will have almost all of their mouth sores healed, quite a bit of their sense of taste come back, at least they should be able to find many different things they can enjoy. Some days are harder than others to swallow and eat enough to attempt to get rid of their feeding tube. If patients are able to sustain themselves for 2 more more months after rads without using their feeding tube for nutrition and/or hydration then they should be ok to have it removed. This is something many strive to do. Being free from the dreaded feeding tube is a huge mental hurdle to show they really have made significant improvements in their recovery. Unfortunately many patients push to get rid of the tube before they really should and end up dropping a noticeable amount of weight when its first taken out. They will also notice along with the weight loss is they will begin to feel lousy and not as much stamina or strength. After about 6 months, patients who work will attempt to return to their previous job depending on how much physical and/or mental activity it demands. Some people can go back half days while others can return full time, this is on a case by case basis.

---- After the first year post rads most of the recovery progress has already been made. The very worst of their experiences are well behind the patient where they now feel pretty good. Of course, they're not 100% back to how they were before having OC but they really are in pretty decent shape. The dry mouth can still be annoying but most of us carry a water bottle every place we go and have learned to adapt to settle in to our new normal.

---- Depending on if the patient is able to maintain their weight should be what is considered if the patient wants to reduce their daily intake to under 2000 calories a day or not. After the first year most patients are determined to regain their former pre-cancer lifestyle.

Radiation treatments following surgery are difficult!!! Adding chemo makes the radiation work better but it also brings along its own set of issues for OC patients. If someone has not has chemo with their rads, expect their timeline to be faster and easier than what I outlined above. Of course, everybodys different so some will sail right thru while others suffer and thats regardless of their OC stage. We're all in this together and should all try to give each other tips and encouragement to get thru some very difficult days. From everything Ive been thru with my own 3x OC experiences within 3 years and what Ive seen thousands of other here go thru I wouldnt wish OC on my worst enemy. Its a horrible disease that disables so many who must go thru barbaric treatments that most people would never dream of. With newly diagnosed OC cases increasing every year while other cancer types are decreasing can be discouraging. I can only hope Im here long enough to see long overdue changes happen to significantly help OC patients have better survival rates along with less invasive treatments.

As a caregiver please make sure you also take care of yourself. I know its a very difficult job watching someone you love suffer and go thru such horrible things. Your mother is very lucky you are there for her!!! Just dont lose sight of yourself in all of the chaos, even if its only to go for a long walk. Some caregivers find they are instantly refreshed when they take a bit of a time out to recharge. Im wishing both you and your mother all the very best with everything!!! Dont hesitate to ask questions here and also of your moms medical team for anything they can help her with to make this easier. Im very very sorry I had to be the one who explained your mom will not suddenly be ok again next week. How I detest being the bearer of upsetting news!!! But now you have a better idea about what can help and what is more of a normal timeline for the recovery phase. Your mom's almost to the finish line!!!! Very soon she will finally begin to feel slightly a little better and it goes almost always up from there!!!

((((HUGS!!!!))))




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
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