Hi,
Our radiation Oncologist told us my husband will return to normal eventually, after he has healed from the treatment. He said his disease is curable and was caught early due to a small spot, no tumor, and his lymph node would shrink and not spread.I am confused as to the drastic measures survivors must endure after treatment? Its very scary what I am reading on the forum. I was told once his 64 treatments are done, we are done. Then he will need follow ups, PET scans etc, but nothing more. We were told he would eat again and his taste buds would recover. All that he might have to deal with is some dry mouth. Can someone clarify?

Everyone is different and will experience things in their own unique way. This is something that applies to so many things from how a patient responds to treatments, how they affect him, even how much weight the patient loses is a variable. Two patients that on paper look the same, same age, height, weight, sex, location of tumor, type of cancer, Stage, etc will have different experiences even though they appear the same. To me it sounds like your husbands physician is speaking in a general manner if everything goes according to plan.

After being here for 9 years, Ive seen all kinds of posts pass thru this forum. Ive seen patients sail right thru and end up as the doctor said, barely noticeable after effects. But to be honest, my estimate would be maybe 6 out of 10 are doing relatively well after the first year post rads. My guess is maybe an additional 3 out of 10 are struggling some but overall doing ok, almost back to normal. Then theres that 1% of patients that really have a tough time and at the 1 year post rads point they are still haveing a heck of a hard time with bouncing back.

I know its so hard not to worry, especially after reading posts about how some struggle. OC is a terrible disease with barbaric treatments and some patients do have life changing issues afterward, but remember its some, not all. Try your best to not borrow trouble by thinking too far ahead about what might happen, it might not too. Take it as it comes, stage by stage. During treatments focus on whats controllable... his intake is the single most important thing that will factor into how easily your husband gets thru this. Second is to stay attuned to his pain and relay everything no matter how seemingly insignificant to the medical team. By focusing on intake you can help your husband to get thru this so much easier. Every single day starting right away he should be taking in a bare minimum of 2500 calories and 48-64 oz of water. If he can do more like 3000 or 3500 calories it will only help make everything even easier.

Hang in there and please remember to take good care of yourself too. This isnt easy on anyone and caregivers have a very difficult job. We will be here to lean on and help you both thru everything.

Best wishes!!!

Thank you Christine for clarifying this all for me. It makes complete sense and I feel better. One day at a time. I totally agree.
My husband has been taking only milk shakes made with ice cream, milk, cream, banana, strawberry, and carnation breakfast powder. He also drinks sweet iced tea, yogert and ensure as well. He is unable to get anything else down. Fingers crossed he does well.

Merri,

Your husbands diet doesn't sound too bad just as long as he is meeting his minimum daily requirements, adequate hydration, which is much more due to the metabolic cancer activity, and treatment, and should be working with a registered dietician. I went through several treatments just with Glucerna, 4-6 cans, which is like Ensure, through the feeding tube. I couldn't drink milk or sugar products, which burned my mouth.

Sounds like your husband is having radiation twice a day hence the 64 treatments?

At least he is still taking something in by mouth. When making shakes, try to use ingredients that are full fat so they have the most calories. You can throw in muscle milk (sold =any department store or pharmacy) in the shakes to boost calories and nutrients. If you substitute half and half for milk it will boost the calories significantly. The daily calories must get over 2500 every single day. Im sorry to be so blunt, but if his intake isnt boosted up to a bare minimum of 2500 calories and 48-64 oz of water daily (every single day) then your husband will have a much more difficult time with everything. This is easily prevented by upping his daily calorie intake. It really is that important!

How about canned sliced peaches (they slide right down), soft scrambled eggs, applesauce, cottage cheese, chicken noodle soup or even try Gerbers puffs (baby snack)? The puffs come in all kinds of flavors. I eat the peach ones almost daily.

Many patients refuse to be part of the forum, leaving these things to their caregivers. They prefer the head in the sand approach, maybe not knowing means its not real to them? They will have their caregiver handle everything. Ive seen many caregivers with these types of patients. To get the importance of the patients intake across to their patient in the easiest, least confrontational way, they will print out select posts. Then the caregiver leaves them in a place where the patient "accidentally" stumbles across the printouts and can read them in private. If your husband is not completely on board about his intake, try letting him "accidentally" find the printed posts. Ive seen this little trick work wonders on many a stubborn patient.

Best wishes!!!

<<All that he might have to deal with is some dry mouth.>>
You should be prepared for more side effects than that. The majority of folks experience more side effects and most find a new "normal" that is different than before.

Three years post treatment and I feel VERY fortunate that, at present, the only long term side effect is neck spasms. Not even any thyroid issues as yet but fully expect for it to need help.

Every person's journey is unique. The same treatment for the same diagnosis is combined to the patient's unique circumstances. This results in different experiences and outcomes. The best you can do is be aware of the what is happening to him and ensure the doctors are factoring that into their ongoing treatment plans.