Meet others living with Head & Neck Cancer: Introduce yourself

@mtborz I am sorry to hear about your husband's suffering and yours as well. I had nasopharyngeal carcinoma and I had also the feeding tube for almost 4 months. I think you need to make sure his mouth and throat have optimal hygiene. Maybe he is having difficulties because of an fungal infection or so. So alcohol free mouth wash with biotin are necessary. The PEG tube allows the patient to take shakes like Ensure. But if he still can swallow why the tube? It is important that he keeps swallowing liquids and soft food if he can because the muscles need to be trained to do their job. A speech therapist should be able to help him make some exercises that can help him swallow. He can do a barium swallow to check what's going on. I used to prepare a mouth at home and take it at least 8 times per day. 1 liter of water+ 1 big spoon of sodium carbonates+ 3 spoons of salt. I used to eat soups rich in protein and antioxidants, drink carrot and tomato juice, etc. Bit by bit he will be able to eat normally with one inconvenient which is mouth and throat dryness. So he needs to drink a lot of water.

@merry Hello, thank you so much for sharing your experience. I have decided not to take any medication but vitamin D3 and Calcium. I am also trying to focus on my diet. I found out that Moringa is so rich in calcium. I am open to learning weight lifting. I am walking every day.

Hi. Thank you for your good wishes. There’s been mention of a feeding tube but no action even though my husband is agreeable. We have consulted with a dietitian several times. Her opinion is that my husband has lost significant weight. Her advice has always been about the food, e. g. small frequent portions, recipes, etc. The problem that no one is addressing is that my husband feels full. He has constant indigestion. I think there is something wrong with his esophagus (a narrowing, a partial obstruction) but it’s only my opinion.
Yes, I have communicated with the doctors via email and phone. I either get referred back to the test results (medical jargon) or the usual line: “these are normal side effects and it takes time”.

Hello, @mtborz. Loss of weight is a horrible aspect of recovering from this sort of cancer, especially when nausea is involved. Has anyone suggested a PEG (feeding tube)? That is just one random thought that came into my head! Food through a tube can still cause nausea as far as I know but intake can be more controlled. From my limited experience I don't think two shakes are enough. You need the advice of a dietician and I think need to get many more calories into him. Could you ask his dietician about this? I hesitate to suggest things like cream, more protein powder etc because I'm not an expert: this is definitely a job for a dietician.
Can you correspond with your health professionals online? Can you email the team via the nurse? I think you need the results as well as detailed advice about how to adapt diet to circumstances.
I wish you and your husband well.

Hi!
My husband was diagnosed with nasopharyngeal cancer in late May. He went through 35 daily radiation treatments plus chemo treatment during a three- month period. The initial treatment was completed in late July. Now he has one more chemo treatment on 11/10 as part of his additional treatment. The CT scan and MRI showed that most of the cancer was gone but there is was some invasion of the cancer into a bone. This what I have been able to learn from my own research. The doctor was not very clear/helpful explaining the results of the tests to my husband. And because of the coronavirus I have not been allowed into any of the meetings/consultations.

But our most pressing issue now is his weight loss and lack of appetite. He has lost over 20 pounds. He has seen a GI and after several tests (colonoscopy, endoscopy, ultrasound, MRIs, etc), we have no idea what is wrong. One suggestion has been an inflamed stomach lining resulting from the treatment. He has been surviving on Scandishakes since probably since mid-June. He will two shakes a day. Occasionally, he may have a banana, cream of wheat or a small pear. He suffers from frequent nausea bouts and has developed anemia. He also suffers from dizziness and heartburn. The only prescription medications he is taking are Omeprazole DR 40mg once daily and Prochlorparazine Maleste 10mg, as needed but not more than twice a day.

Has anyone experienced this kind GI issues with the treatment for nasopharyngeal cancer? Any tips as what I can do help my husband rev up his appetite?
I’m sorry for the long comment. Thank you.

@imatine- Hello, it's nice to meet you. I am a lung cancer survivor. I also have your problem of having osteoporosis. I have chosen not to take any drugs. My suggestion to you is to do weight-bearing exercises. If you've never lifted before get yourself a trainer or join a gym. Proper form is the most important factor in weight lifting. I also began taking D3 and calcium. When you walk you can also carry lite weights in your hands, like 1 or 2-pound weights.

Do you think that you would be open to learning how to weight lift?

I have not had to deal with osteoporosis. Best of luck getting some answers from others who may have similar experiences to you

Hi @imatine, welcome to the Head & Neck Cancer group. I assume that you are most concerned about the potential side effect of osteonecrosis of the jaw related to to taking bisphosphonates and other medications to treat osteoporosis. I'm tagging fellow members like @alpaca @deborahe @phinken @loli to see if they have had to deal with osteoporosis and deciding whether to treat with medications.

Imatine, have you discussed other treatment options besides antiresorptive medications (bisphosphonates and denosumab)?

Hello I am 42 year old. I had nasopharyngeal carcinoma back in 2010. I was treated with radiotherapy. Now after 10 years I am diagnosed with osteoporosis and I had difficult time to decide on which medication fits my case the best. Unfortunately all osteoporosis treatments can have serious side effects on cancer patients or survivors like myself as you know, because the jaws received a good dose of radiation and because those same med such as prolia can cause serious infections in the jaws, etc. All feedback is much appreciated and needed 🙏🏼🌷

@jano, does one ever not worry about cancer coming back? Does the worry ever help? But it's hard not to worry. Five years is certainly a milestone and as time goes by one begins to accept cancer as part of history.

How long did it take to get your taste buds back? How did you encourage yourself to eat when you couldn't taste and food had little appeal?