It has been awhile since I updated on my progress. This coming Tuesday I will finish week 10 of post treatment. There are many issues I am still dealing with but the past 5 days seem like the most progress has been made. I had another laser treatment on tongue ulcer 4 days ago and I think we are close to having this healed. I was able to eat more today than any other time in the last 14 weeks. What I am still dealing with is:

-Weight loss while taking in 3000 calories per day - I have lost 10 pounds in three weeks and still rely on PEG for majority of nutrition.
-Fatigue - I have a ways to go to feel "normal". I am travelling to the office now but can't seem to leave home until 10 AM and have to leave the office by 4. When I get home I am drained. I do work from home from 7 until I leave.
-Dry Mouth - overnight my mouth becomes parched several times over. During the day I know the saliva count is down but my mouth does not become parched like it does overnight. Is it normal to have your mouth so dry that lips stick together? Tongue sticks to roof of mouth? What are some solutions? I was just prescribed Caphosol which does not seem to help much.

I feel like I have turned a corner and will continue to make progress albeit slowly. This journey has been one of ups and downs and has taken much longer than some people lead you to believe. I do not know where the tunnel is or what that feels like to walk out of it. I have no concept of how many corners I will turn. End of the day I have to persevere and focus on the hope that a new normal will happen. I will follow the advice of the surgeon whose care I am now under, "Give yourself 3 to 4 months after treatment to feel somewhat normal. It will take a year to find the new normal". Following this would have saved me some heartache.

JamesD: The important thing is that you are making progress and that's good! Just one suggestion my son followed that really helped him with the dry mouth at night: He used a Plant Mister so that instead of waking up fully to drink water, he just sprayed his mouth and he could go back to sleep a little easier. The plant mister has a finer spray that just using a spray bottle. Everyone is different and reacts differently, so I'm sure others will be along with more suggestions. You just have to keep trying and see what works for you. No matter how small or slow the progress, celebrate each new step towards the "new normal" and know that you are on your way to feeling better every day!

JamesD, overall this sounds like a good report at 10 weeks. I'll try to answer your question to the best of my knowledge.

The weight loss. Is this after you went back to work or did you work all along? Are you being weighed on the same scale, preferably in the morning, and with the same articles of clothing, preferably without. Your weight can vary by 5lbs throughout the day. Different scales, who knows. Even at my doctors, I sometimes see two, and my weight differs by several pounds. Are you measuring your intake? You may not be eating as much as you think, plus working will burn extra calories.

Fatigue could relate to your food, water intake, lack of sleep, medications, recovering from treatment, could have low blood counts, hemaglobin. TSH, testosterone, B12, Creatinine levels, so these should be checked by blood work. A CBC doesn't test all of these. There is something called CIF, Chemo Induced Fatigue, most of which is not fully understood, but basically says to take care of what you can that is deficient, such as items I mentioned.

Dry mouth overnight. One thing is the salivary glands basically shut down at night, and why people wake up with morning breath due to the build-up of bacteria, plus the majority of moisture is lost when people sleep with thier mouth open. There are products out there to help keep the mouth closed. I've seen one used for snoring or use tape, but check that out with your dr lol. Another is to sleep with a humidifier, drink a glass of water before sleeping, and keep a bottle reachable during the night. I heard some using a camel back, which is a water pouch, used with biking to sip water from, but I never did that. I used biotene dry mouth gel on my lips, inside mouth before sleeping, and that seemed to help some. Some Medications can cause dry mouth too, but if you need them what can you do, except maybe altering the timing schedule if you can. Water only hydrates the mouth between 12-16 minutes. Others like milk last longer, replicates saliva. Maybe others like coconut water, lemon water since citric acid helps produce saliva.

Keep up the good work.

Paul I did work from home a few weeks after treatment. I suppose that may have been too early but some projects were sinking and I had to jump in to resurrect. Lot's of conference calls and talking which irritated the ulcer I'm sure. I wish I could have waited but that is not my personality either. Blood work has been great with 0 issues. I just think more than anything the tongue ulcer is the culprit plus back working too soon. I have some leftover coconut water that I have not touched in 2 months. So I will try a few cans and the plant mister Anne-Marie suggested which may work well. Trusting all is well with you.

Hey James,

Great to hear from you. I'm just a bit behind you and am having the same problems.

To manage the fatigue I have to plan in lots of early nights and fortunately I have a wonderful husband who does a lot in the evenings, often taking over completely, so I can rest up. I too am back at work full-time as I am self employed and just working exhausts me, let alone having any type of life outside of work. It is getting better and I have to try not to do too much and plan ahead with lots of rest beforehand if I do want to go and do something.

My mouth is also very dry at night and my tongue sticks to the roof of my mouth and closes up. I just take 1-2 sips of water and go back to sleep. It use to be about 10 times a night but now only 2-3 times and I've even had a few nights where I haven't woken up at all. I rinse with warm water & baking soda before bed and have water next to the bed but that's it.

I've also continued to have weight loss (we're very similar in all our symptoms), but it is slowing down now (finally) but hasn't yet stopped. I'm eating very small amounts compared to normal so am supplementing with Fortisip drinks. I think we just need to eat more or drink more supplement drinks if the weight loss is still occurring.

Good luck with making some more progress.

Very glad to hear from you. For the last 21 days I have been experiencing incremental but daily improvements. Dry mouth has fallen like yours to 1 to none times at night. I do keep water close by though. Also breath Rite strips help. I have gained 10 lbs back and give Christine credit for that. For weeks I do a shot s or she recommended. 2cups whole milk instant breakfast envelope, whey protein powder, 2 tablespoons peanut butter, same of chocolate syrup, then 2 cups or more of rich chocolate ice cream. Blended and 2000 calories. I take that every night to guarantee calories. My energy level is incredible compared to a few weeks ago and 10 hour days still leave me with energy at home. Tongue has healed still thin on tissue though. Still very careful of what I eat but I do get 1500 to 2000 calories. Hair is growing again on my neck. Only battle is with my throat from time to time. Soreness but tolerable. You will experience same so keep pressing forward.

Jim

Jim, it sounds like you are making great progress. Congrats! So glad the chocolate peanut butter shakes have worked and are helping you with your recovery. I would actually put 3 or 4 cups of chocolate ice cream in my shakes. Im surprised I didnt gain any weight as I would drink 2 or 3 of those a day besides all my other intake.

Keep up the good work and you will continue to heal and improve.

That's fantastic to read, James. Keep it up!