Your tips for recovery after 35 radiation treatments for tonsil cancer

@colleenyoung All my follow up is local here in Scottsdale. I’m fortunate to live only 15 minutes away.

I assume I will repeat the PET scans for the normal intervals - my next is 12 months. The Mayo team has told me that there is no concern for any remaining disease based on my recent scans and also for recurring disease. I don’t think I can ask for any more assurance since no one can give 100%.

The one point I was reminded of is that most of what we read on-line is questions and issues. Not all the success stories are posted. So if you’re new to this discussion, keep this in mind.

I can also track my progress based on how my beard is filling back in. I don’t grow mine out - but I can tell by the need to shave. I started with a loss of hair on the left lower back of my head and left and right front area just below my jaw line.

The hair in the back took about 6 months to return to normal. A few months later, my right side (front side) filled in. Last to fill in will be the left side which received more treatment. I’m told the body prioritizes hair growth last - not sure if this is right. But it seems to line up with what I feel elsewhere.

Just in the last few weeks I feel like a little more saliva production has returned, but not even near 50% yet.

And yes, as hard as it is to hear (I hated hearing it), you have to vary all the taste inputs even if it taste like nothing. Been there. Done that. Only exception is spicy.

I recall complaining that ice cream tasted like hand lotion. It was awful. Today, still not sweet, but I can taste flavors - malt especially.

@robpara Your success story is always greatly appreciated. Although success in treatment has become more and more common, we often don’t hear about the good ones, only the difficulties.
For me, the physical part eventually worked itself out to an acceptable or comfortable level. The mental aspect however, I’m not sure if that will ever set right. For years now, whenever any health issue persists for more than a normal course, the mind wanders toward cancer. It has been amazingly more than two decades now although repairs have been performed in recent times. I suspect that ongoing awareness of cancer return has kept me vigilant all these years. I just wish that part of recovery would depart as well.
Keep getting better. Enjoy this second life you have earned. Thank you for your updates and kind comments. Good healing.

@hrhwilliam You are an incredible part of this board. I have tried to find every post you’ve contributed. People like me are standing on your shoulders. Being 67, another 20 years or more would be awesome. And I have hopes that as we make each additional year, the outlook for advancements in treatment increase.

I have probably been in denial of what I have. I have not given it a name. I’ll say things like disease or mass. I also made the choice to only tell a few people. Only one of my brothers for example. I chose the few people based on their positive outlook. I made a few wrong choices - those people all mean well. But when I see them, they always take me back to my “condition” (see what I did there?). And I just want to be treated like I was before. No tilting of the head. No sad look. If I explain my situation, I can start to question it myself and that’s not good. I often give it the most thought late at night and that’s no good for sleep. So I really stay focused on only the one good outcome.

But it is tough on the mind. Friends think about it only when they see you. Your spouse thinks about it often but I really want my wife to not worry of course. For me, it’s reduced from 24/7 during treatment to much much less.

Here’s some more about my experience. The cisplatin - chemo - was not difficult to administer other than my veins were harder to find. They used ultrasound. For the first 4-5 weeks, I would eat food and do work while chatting with my daughter and wife. (I still can’t imagine what Steve Fleury went through with the isolation during Covid) The last weeks were hard to eat food. But if a McDonalds cheeseburger suddenly seemed appetizing, my wife would bring those in. Like you have said, we aren’t worried about healthy eating at this point.

The anti nausea meds in the drip were enough for me. Interestingly, about a week after treatment stopped I noticed a skin breakout like mild acne. First on my chest. Then upper back moving to lower back and then finally my stomach. Less on arms and legs. It was like I was shedding the cisplatin.

Not painful or itchy. Just weird. I believe the body needs time to process this out of your system. I’m not sure how this ties to taste buds.

My visit with the Rehab team was last week. I almost passed on this as my lymphedema seems to be managed through manual massage and the compression mask I wear at night. I will be receiving the pump because I know that they know better.

Sorry if I’m repeating stuff.

Hi @robpara,

Did you get the pump paid for by insurance?

I got denied 3 times which included the appeals this year for it by my wife's employer health insurer who is Anthem Blue Cross & Blue Shield.

@hrhwilliam You are an incredible part of this board. I have tried to find every post you’ve contributed. People like me are standing on your shoulders. Being 67, another 20 years or more would be awesome. And I have hopes that as we make each additional year, the outlook for advancements in treatment increase.

I have probably been in denial of what I have. I have not given it a name. I’ll say things like disease or mass. I also made the choice to only tell a few people. Only one of my brothers for example. I chose the few people based on their positive outlook. I made a few wrong choices - those people all mean well. But when I see them, they always take me back to my “condition” (see what I did there?). And I just want to be treated like I was before. No tilting of the head. No sad look. If I explain my situation, I can start to question it myself and that’s not good. I often give it the most thought late at night and that’s no good for sleep. So I really stay focused on only the one good outcome.

But it is tough on the mind. Friends think about it only when they see you. Your spouse thinks about it often but I really want my wife to not worry of course. For me, it’s reduced from 24/7 during treatment to much much less.

Here’s some more about my experience. The cisplatin - chemo - was not difficult to administer other than my veins were harder to find. They used ultrasound. For the first 4-5 weeks, I would eat food and do work while chatting with my daughter and wife. (I still can’t imagine what Steve Fleury went through with the isolation during Covid) The last weeks were hard to eat food. But if a McDonalds cheeseburger suddenly seemed appetizing, my wife would bring those in. Like you have said, we aren’t worried about healthy eating at this point.

The anti nausea meds in the drip were enough for me. Interestingly, about a week after treatment stopped I noticed a skin breakout like mild acne. First on my chest. Then upper back moving to lower back and then finally my stomach. Less on arms and legs. It was like I was shedding the cisplatin.

Not painful or itchy. Just weird. I believe the body needs time to process this out of your system. I’m not sure how this ties to taste buds.

My visit with the Rehab team was last week. I almost passed on this as my lymphedema seems to be managed through manual massage and the compression mask I wear at night. I will be receiving the pump because I know that they know better.

Sorry if I’m repeating stuff.

@robpara
I completely forgot about the rash! I got that too! I also got cisplatin chemo but I didn't make the connection.
What type of compression make do you wear?

@roblem I’m in process.

I was told at the time of the demonstration in my home, that my insurance would pay about 75%. So I went ahead and ordered it. That was maybe 1 month ago.

Following up this week, I recalled they would get a final authorization soon, so I asked about the status of my pump shipment. This was part of the reason I had the rehab appointment last week. They require a recent evaluation.

Long story short - I’m still waiting to hear back from Tactile Medical. But I think it’s all Ok (still).

I also have BCBS through my employer. I paid very little out of pocket for this entire process. Thankfully they approved proton therapy but that took some calls - a whole separate story - trying to get the right people at BCBS to talk to the right people at Mayo.

I have to say, everyone was cooperative and helpful.