I completed all treatments 5/10 expecting to feel better each day. Well I have thrash, so back on medicine for that(fluconazole), along with anti nausea(ondansetron), saliva stimulator(pilocarpine), & Zantac.

Swallowing is so painful I was instructed to take a pain medicine.

What is going on? I want to get better.

I have not eaten in five weeks. When should my taste buds come back and my saliva?

Patricia,

It seems like you are experiencing about everything you should right now. I don't think everyone gets thrush...just everyone I know! It is in our digestive system and opiates affect the immune system which could explain it for some but any type of sugar will feed yeast as well. Thrush=candida=yeast.

Many people opt for Fentanyl/Duragesic patches for the intense throat pain. They are time release and you only have to change them every 5 days.

More importantly, you need to start eating again. Things will return soon...it is just different for everyone. Hang in there it will get better!

Ed

Everyone is different and heals at a different rate, but I've found I'm able to eat softer/wet foods now. I'm 6 weeks out of radiation. Things started to improve ~2 weeks out of radiation for me and continued to improve as I was able to reduce the medicine I was on.

It takes a long time for your body to heal and each day there are only miniscule improvements.

For a lot of people, they begin to see light at the end of the tunnel after 2 or 3 weeks post treatment. Radiation has a delayed impact on the body, so effects are not felt immediately. I have to keep looking back where I was at the end of treatment now to see how truly far I have come to keep myself sane. It's frustrating but it will get better.

As I mentioned in your other post, it will be about 3 weeks after rads before you begin to have some better days. Recovery can be a painfully long and drawn out process. A complete recovery can take a full 2 years. Most patients will begin getting their sense of taste back after about 6 weeks.

You MUST get nutrition! You will not recover and end up hospitalized for dehydration and malnutrition if you dont take in at least 2500 calories and 48 oz of water every single day. If you cant eat, drink! Get some Boost of Ensure and force yourself to get those down. If you are doing that badly, ask your doc for a nasal tube to get you thru the next couple weeks. At the very least ask your doc to write a prescription for hydration so you can at least get fluids.

If your mouth hurts too much to eat, ask for a prescription for magic mouthwash. Ask the doc to up your pain meds if you are in pain. Being in pain will not help you to recover.

I know it is a very hard time for you right now. It really will get easier very soon. Radiation continues to work for a few weeks after finishing treatments.

Hang in there!

Hi Patricia,

I'm sorry you're hurting. Unfortunately, you're feeling pretty much as you should be.

I'm 3 weeks post treatment today and I'm still hurting pretty bad. I haven't had any food by mouth since April 23rd. With the exception of water, I'm getting all my nutrition and hydration through a PEG (which I had to have put in the last day of treatment). I've been on narcs for pain for months now.

Fatigue has been the biggest challenge. Even the smallest of exertion wears me out. It's getting slightly better but it's still a big obstacle.

On the positive side I never lost my taste buds so I can taste but unfortunately it hurts too much to eat ~lol~ My sense of taste and smell have become over sensitive. I tried a sip of chicken broth the other day and I ended up vomiting. Smells that I normally like are grossing me out. My partner and caregiver made a wonderful seafood and pasta dish for herself and I ended up having to go upstairs and close the bedroom door because it was making me nauseous.

Saliva has vacated the building for the most part since about week 4 of treatment. I'm getting a little bit back but it's thick. The mucositis has eased up a lot and I'm grateful for that.

Hang in there! Make sure you hydrate as much as you can and get nutrition into you or you could end up in the hospital. Sleep when you can. If you can, get up and at walk around. Even if it's back and forth in the room. Any tiny bit of exercise is beneficial. I'm finally at the point of going shopping and walking around the market. It exhausts me but I know it's doing me good.

You should start to see and feel some minor improvements by the 2nd week out.

Positive thoughts and prayers

"T"

The first 2 to 3 weeks POST TREATMENT are usually the worst for everyone so in a gruel sense you are normal. Most of us finally walk out of the tunnel in our 3rd week post Tx and keep in mind your recovery from this Tx can take every bit of 2 years so even when you think you are out of that dark tunnel you still may have bad days mixed with good ones until the bad days slowly disappear.

Be patient.

Hi Patricia,
Eric finished treatment on 12/31/12 and his experience was very similar to yours. He was greatly discouraged when after two to three weeks post treatment he still didn't see or feel much improvement. His only nutrition was delivered through his PEG tube because his throat was so sore. He was forced to be patient and trust that the improvement so many people felt after two weeks would soon come to him....and it did. We all want a definite timeline of when the bad goes away and the good arrives but everyone is different. I'm happy to report that Eric is steadily improving....we try to celebrate the baby steps. Hang in there!

Ed,
Thank you! Almost thrush free. Tomorrow is last day of medicine. I am concerned my Dr will put me back on Clorimazole lozengers. Previouly, they made me sick. I should not stress over this, it will clear by tomorrow, right?

May I ask, have your taste buds and saliva glands come back?

Patricia

"T"

Thank you for the encouragement! You are so fortunate to still have your taste buds. I believe mine will return, along with saliva. I have to believe!

I wanted to pass on a medicine that will increase saliva, Pilocarpine 5 mg.. The problem for me is since my regular saliva glands are not working right now it produces that terrible thick mucus. I am so tired of medicine I opt out for now. Maybe I should try one a day. During treatment I took four, but no mucus. That only came when treatment ended.

I understand about sensitivity to smell. My husband is anxious to be able to make coffee in the house again! However I am much better then 3weeks ageo. Just the mention of some food made me sick.

I guess you are right , baby steps!

Prayers, Patricia

The thick mucous is part of the first few weeks after finishing rads. That thick gunk usually will be replaced at around a month post rads with dry mouth. Unfortunately you can expect the dry mouth to become worse soon.

Pilocarpine will help with saliva, but it also can make you sweat.

Hi Patricia,

No one can say for sure when your taste will return, but for everyone I've spoken with, it's been a slow process. I lost mine very suddenly, it was as if someone sneaked in and simply turned it off at the switch! I had just made myself a large bowl of Vanilla Ice cream (my favorite substance in the Universe!) and when I put the first spoonful into my mouth, I had to spit it out immediately. It tasted like cold poster-paste (that stuff made from ground-up hooves.) That was in November, '09, and I am just now able to eat and enjoy (some flavors) of ice cream.

Some flavors will be restored in a few months, some will take much longer, and I cannot say if they all will be restored. Some of mine are partially back, but with some, they are significantly different. All you can do is take small samples and see what happens.

As for the saliva, a lot depends on where (in your body) you got the radiation. In my case, the radiation burned out about half of my salivary glands permanently and dry mouth is my constant companion. I find that chewing gum that is sweetened one of the non-sucrose sugars keeps my mouth moist most of the time, except for when I'm working out hard at the gym.

The gum I chew is Trident "tropical twist," sweetened with Xylitol. I buy it by the 3-pack and keep a pack in my car and by my bedside.

Biotene products also work, but in my experience, they are somewhat over-hyped and, IMHO, not worth the expense. YMMV.

Good luck!

Hi Patricia,

Glad to hear you're doing better. It really is baby steps Thanks for the tip on Pilocarpine. I see my MO in two weeks and I'll ask her about it.

What a difference a week makes. A week ago I was still hurting pretty bad. Since then things have improved steadily. I went back to work yesterday part time (4 hrs a day). I have an office/desk job. I'm pretty tired but it felt good to focus on something other than cancer. It's a lot of phone work so dry mouth is an issue. However, with my trusty water bottle I get by This week I've eaten something by mouth every day. Soup w/noodles, eggs, mashed potatoes, cream of wheat. Very small amounts but it's a start.

Keep the faith Patricia! It will get better!

"T"

Be patient with yourself. Thrush is just awful (had it 3 bad times post treatment); then got oral herpes too! That all really set me back on eating and tasting. However, you have to get the nutrition - and calories. Your body needs healing power. For the first few months post treatment I went to gym for 1/2 hour with hubby and then sat and read until he was done. Now, 8 months post treatment, I work out with him the whole time. I still have limited saliva (but I can go in a store for over an hour without my water bottle tied to me) and very muted tastes (I have no sweet so everything else just isn't right)....but I am eating more for texture. Some things just get too "stuck" (between face and teeth) but I try, add sauces, learn something and try again. I am holding my weight and doing a bit more healthy every day. You have to both give yourself a break and push yourself a bit....a dance...but it will work. You can do it!!!