Hello everybody,

My name is Brian and I am 52 years old. I was diagnosed with r/lateral tongue squamous cell carcinoma (T2/N2a) and had surgery on 11/27/18. Tumor was removed measuring 3.9cm x 3.2cm x 2.9cm and margins were cleaned, with partial neck resection and removal of 32 lymph nodes. Path report showed mets to one lymph node and a nerve. Treatments included 2x cisplatin (since the doc said I was young and otherwise healthy) and 32 radiation treatments. I am about 2 months post treatments and am learning to eat again with some success. I joined because I have been wondering about things like if and when my sense of taste and saliva production will come back. The great people at the cancer institute have said that I am responding about as well as they have seen, but am wondering about quality of life issues post treatment and beyond. I don't yet have any specific questions as much as I am surfing through the various threads to see what other people's experience has been among those who have gone through this experience. Thank you in advance for your hospitality.

Brian

Welcome to OCF, Brian! Its always great having a fellow survivor join our online family. You will find TONS of info by reading thru our posts on a wide variety of oral cancer (OC) subjects. Theres also page after page on the main OCF site that has anything and everything about OC (link is at the end of this post).

One thing you will notice thats repeated often is "everyone's different". What one patient struggles with another patient barely notices. When it comes to recovery, we're all pretty impatient, we can never get well as fast as we think we should. At 2 months post rads, you have a long way to go before you are fully recovered. Most of us have struggled just like you with issues of dry mouth, loss of taste, difficulty swallowing, lack of stamina and the many other problems that happen after going thru rads. It takes the body 2 years to be considered fully recovered. At about 6-10 months post rads, most OC patients notice a few ongoing problems they still have. After the first year post rads, improvements with dry mouth and sense of taste are more gradual. Those 2 things are what takes the longest to heal. Even around the 2 year post rads mark Ive seen a few patients reporting improvements in their sense of taste and dry mouth.

The best thing you can do to help with your recovery is to continue top focus on your intake. Every single day take in at the very least 2500 calories and 48-64 oz of water. If you can take in more daily calories and water until you hit your 2 year post rads mark it can only help make your recovery easier. Check with your doc if its ok to add some high protein whey powder to your diet. The whey powder boosts the protein intake which helps to speed healing. Being 2 months post rads, its not easy to take in the 2500 calories and 480-64 oz of water. At this point its all about getting the most calories per swallow. Go for full fat everything, milkshakes, smoothies, etc. Im including a list of easy to eat foods. These items have a smoother texture, less spices and are easier to eat especially for patients who are struggling with mouth sores and/or with a very sensitive mouth, their swallowing ability and have a fleeting sense of taste.

Hang in there! The rest is easy compared to what you have already been thru.

List of Easy to Eat Foods

Main OCF Site, Understanding

PS.... GREAT signature, thank you!!!

Thank you for your reply. I have definitely heard the everyone is different every single time i've asked a question, lol. Thank you for the helpful information as well.

For those who have had radiation treatments coupled with cisplatin, what is your experience with the return of your ability to produce saliva and taste food? This to me is the most difficult part of the treatments to deal with. Overall I have a good prognosis so I haven't been dwelling on my future too much and I know that I can't sit back and worry about a recurrence, but the whole thing about constantly having to keep my throat clear and waking up with a ton of thick phlegmmy goop in my throat is really starting to wear on me. I also miss eating for pleasure, and the taste of my favorite foods. Although, I was overweight before this ordeal started and now I am well within the normal weight for my height, I consider this a plus. One thing I am starting to do is get outside now that the weather is getting better and returning to doing things that I enjoy like hiking, fishing, bike riding and spending time with my 12-year-old daughter. I have also signed up for graduate school that I have put off in order to fight this disease. I earned my bachelor's degree in general psychology in August and three months later was hit with this diagnosis so it feels good to get back to my master plan. Thank you in advance and I appreciate your insight.

Hello Brian
I am 4 months post radiation. 35 treatment and 7 cisplatin. Mouth still gets a little dry. Always have big cup of ice water at all times. Worse when sleeping. Wake up with throat on fire somtimes. Was using feeding tube for everything last month of treatments and for about a month after. Taste started coming back about then. Im eating by mouth again. Last couple months. I miss food also. I have no teeth due to surgery so it makes it harder to eat. Im doing good with softer food now and no longer use feeding tube
Taste is very good now but still struggle with dry mouth
Stay positive taste will come back to you soon
Best of luck to you.
Enjoy life!!!
Mike

my husband had 35 radiation and 3 cisplantin treatments. the only thing he cannot taste well is sweet stuff. he never really lost his taste like most do. He is 6 months out from treatment. He still has a little bit of phlegm I guess because i hear him clearing his throat a lot but I don't see him carrying water around as much as he had been..it's now diet Coke. He cannot swallow some foods with edges like popcorn but otherwise, most would say they never knew he had cancer. Best wishes to you on school.

Thank you for your reply, Mike. I see a lot of horror stories on here and my mind can't help going to some dark places. I have been eating some foods but I think that sometimes I go a little too fast and the pain becomes overwhelming. Oh I long for a big ol' burrito like I used to enjoy so much before this ordeal started. I have been feeling better and have been forcing myself to get out of the house and resume some of the activities that I enjoy. I go back to work in a couple weeks and I am starting school again after taking a year off to earn a masters degree, My main struggle these days is having to wait for my follow-up pet scan to see if they got all of the cancer. The hurry up and wit is kind of a drag. Thank you for relating your experience to me and for the kind and encouraging words.

Thank you for relating your husband's story. It sounds like I just need to be patient and allow for things to come back naturally. While I was going through the worst of my experience I would just tell myself that things could be worse and whatever I have to do to facilitate my healing I will gladly do. Lately I have been getting kind of down in the dumps but it may just be cabin fever since I live in Idaho and winters are very snowy and miserable. The nice spring weather has me feeling antsy since I just want to go out and enjoy the outdoors with my daughter. I guess I just have to be patient and just keep my eyes on the prize and stay positive. Thank you for responding to my post, it helps to hear other people's story.