Hi All,

My brother has two more weeks of chemo/rad - he is going to make it through. He was is such pain when he started (he had a large tumor that caused 9-10 level pain) that he has been on Fentanyl patches the whole way, so the pain from treatment has been minimal. The thick secretions are stopping him from talking, but hopefully those will go away soon post treatment. But, thank goodness, the tumor is definitely shrinking!

I have two questions - Having been with him in Boston through the treatment (I have been here since he was diagnosed in early May but I will need to go back to Los Angeles a few weeks post - I am a professor and school starts again). I will be leaving him with his wife, and wanted to know what is the level of care usually required post-treatment.
Is it something she will need help with, or is it mostly just a matter of patience in recovery and follow ups with doctors and a swallow therapist? (He is getting enough nutrition/fluids through the PEG.)

My second question is more curiosity. If G** forbid the chemo/rad doesn't get it all, and it grows back, is a second round of chemo/rad in the same spot an option? Is surgery at that point (it was too big for surgery before)?

Thanks

a

A few weeks after he should start to climb out of his hole. His problems will mostly be pain management still, and tiredness, and trying to get back to eating/swallowing. That's an arduous process depending on how painful his mouth is and his taste and sensitivity. His wife should be fine.. As long as - if he's the type who needs to be bullied into stuff - she has the ability to do it. Hugs and congrats on getting him through it!

The first 2 or 3 weeks after finishing rads is the worst time of the whole process. He probably will have alot of mouth sores, be very fatigued and not want to eat or drink. Its a very dark time. But (as with most of us) around week 2 or 3 he will begin to slow notice small improvements. Around here, we call this "coming out of the tunnel".

Most patients will need someone to make sure no matter what that they take in enough calories (2500 minimum) and also at least 48 oz of water daily. The caregiver will also need to write down all the medications and make sure they are given to the patient at the correct times. As a patient it can become confusing especially if taking lots of pain meds. It becomes really hard to know what time you took the last dose and when the next dose should be taken. There usually arent many doctor appointments during this first 3 weeks. The patient may spend considerable amounts of time in bed. When I had just finished rads, I would be in bed 20-22 hours a day (Im a bit of a wimp and felt pretty lousy so I would sleep).

As far as what if it comes back..... try not to even think about that right now. Any recurrence treatment would be discussed if it would happen. Too much depends on where the tumor would pop up and how long after finishing rads if the patient could do another round. Usually the 2nd round of OC is treated with surgery to remove the tumor. At least thats what happened in my case. Many more patients do ok after they go thru their treatments, a small percentage have to deal with a recurrence. It could be years down the road if something like that were to happen. Best to focus on the here and now than what if. Having a recurrence is every cancer patients worst fear.

To help with recovery try to encourage small goals to be set. Like getting the mail or walking to the corner of the block, then a couple days later walking around the block, etc. By giving the patient something to look forward to it helps to get them out of bed and moving around which really does help them to recover. For all of us, the recovery process cant happen quickly enough. It is a frustrating time, full of ups and downs. Relearning how to eat when most things taste like burnt cardboard and get stuck in your throat isnt a fun experience. The thick mucous will be replaced with dry mouth. Best to push a minimum of 2500 calories and 48 oz of water every single day for the first year. Ask the doc or nutritionist if beginning to add some high protein whey powder to liquids to boost protein intake will help them with recovery. If the patient is struggling with fluids and not feeling the best, they may be dehydrated so at that point ask the doc for a prescription to get hydrated a few times a week. This can be an ongoing thing starting at anytime.

Your brother should be ok with his wife as the caregiver as long as she can stay on top of everything I mentioned above, especially nutrition and water intake. Thats a huge issue for almost all OC patients and it can quickly lead to malnutrition and dehydration if the patient becomes too stubborn and refuses to take in enough every day. I was a stubborn one who slept instead of setting up the feedings so I was hospitalized a few times and it was not fun.

The next few weeks will not be easy ones. Your brother is very lucky to have you in his corner helping him thru this. Hope you remember to take time for yourself sometimes too.

Good luck!!!

I agree with the above with the 2-3 weeks post treatment being difficult. He should be fine with his wife, even to care for himself, although it can be difficult, one should be somewhat independant.

Also agree with regards to recurrences being dependant on many factors. I don't see HPV, and gather not if it was precancerous 10 years ago. I forget if it was in the oral mouth or orpharyngeal, but surgery is usually the first option with recurrences with or without radiation or chemoradiation. Radiation can be given again, depending in prior dosage in grays, area, toxicity level, proximity to vital structures, and experience of the RO. I had radiation 3x to the same location. Most post treatment scans are clear, although most recurrences occurr the first two years, and will have frequent follow-ups with the oncologists, and ENT for that reason. Usually it's every 1-3 months the first year, and increased a month or so every year thereafter. Ones energy is best served to complete treatment, and recover, instead of the possibility of recurrences, but I think everyone worries after finishing Tx. Good luck.

Thanks all! This is really helpful.

Not sure I understand. Your Signature Line states as of 5/17 starting rad for 5 weeks but you just posted 2 more weeks left?

First off please understand that everyone can react differently to this Tx so do keep that in mind with what we say.

As has been said the 2 to 3 weeks pots Tx may be his worse and is for most. Once he "walks out of that tunnel" ( he will know )and starts his true recovery he still will have many bad days mixed in with good days and S L O W L Y the bad days will go away. He will be very weak for months and his recovery can take every bit of 2 years. Nutrition and hydration are just as important during this recovery as they were during Tx. We recommend 2500-3000 cals every day.

The dry mouth phase will start once the thick stuff goes away. That will improve along with his taste over the next 2 years but again S L O W L Y. I estimate I'm 90% back to pre Tx in both categories but it did take 24 months to get here.

Sorry - I messed up on the signature. I fixed it below. It started 6/17 for 7 weeks. HE has two more to go now (plus one - the hospital closed on July 4th, so the 35th RAD is on the following Monday).

Hard to figure out these days what is causing what - there are so many meds involved in treating side effects and pain, that the fatigue could be from anything - increased pain meds, what day after Chemo, nausea meds........ We know what is causing the secretions and mouth sores, but the on and off "in a fog" is hard to nail down causation. Truth is, it probably doesn't matter.

He hasn't spoken in a long time - at first it was the tumor pain, but as soon as that subsided, he got hit with the secretions. Even though he is going through swallow therapy (that he hates, but we push) I hate the idea that he will go for so many months without speaking. I hope that the dry mouth - that I know is terrible - doesn't continue to impede speech.

He wants to think he will go back to his regular life a few weeks post-treatment, although he hears from everyone that the recovery is SLOW (after 2 to 3 weeks of tougher post-Tx). But together we are focusing on one day at a time - and we know that no two days are ever alike.

Had to say what might be causing his fog but many of us attributed to what we call "Chemo Brain". Again, like everything, if this is what's causing it, it will take time to resolve but will.

Please tell him to FORGET about things quickly returning to normal as this is VERY VERY RARE, if ever. I just don't want him to get discouraged when that doesn't happen as quickly as he thinks or worse, has been told.

I only lost my voice for about 2 weeks. Re the thick crap, I carried a small Styrofoam cup in my pocket and spit in it while on the go. Gross but you do what you have to do.

Dry mouth shouldn't interfere with speech but he may need to carry a water bottle with him 24/7 for a while. I kept a bottle in every room of the house because I didn't always remember the damn thing. I also left sooo many bottles in stores while shopping especially Home Depot and unfortunately I wouldn't remember until I was a mile down the road and in desperate need of a sip. More than once I had to stop at a convenience store as I was unable to make it home without thinking I had been on a desert for 2 weeks. I noticed my first improvement in the DM and taste at 4 months PT; more a 5 months; a great improvement at 14 months and a tad more and the last at 24 months.

Patience!!!!

Thanks. I hate to see him so down every time I tell him that this is slow, slow slow. But again, I dont want him disappointed.
And the reason he doesnt speak is because of the mucus - his voice is fine.

Everyone is different, but I like honesty, being told upfront, and probably feared the unknown more than anything. He is lucky to have you on his side, supporting him, and obtaining information, The fog could be many things, and like David said, Chemo Brain, and the meds you mentioned, dehydration, insufficient or lack absorption of nutrients, and goes on. It takes time, two, three weeks for the mucus, and at 3 months I felt best, but not completely. Some side effects can last up to two years, more, but are minor inconveniences compared to cancer. Good luck.