LOOKING FOR INFO AND SUPPORT

TangoWhiskey

Good day to all!

I never thought even six months ago that I'd be in a position to write this and I imagine that puts me in the exact position all of you once were in.

I went to my PC doctor in December of 2019 and told him I was having problems swallowing my meds. He was concerned and referred me to an ENT who initially thought it might be tonsil related but after checking further he did biopsy which indicated tumor on base of my tongue.

That set everything in motion and I was diagnosed with Stage II Squamus Cell Carcinoma (HPV). ENT sent me to a trusted team and I was given a treatment regimen of 35 radiation treatments over a seven week period in addition to seven chemotherapy treatments (Cisplatin) over the seven weeks. The chemo was for every Monday while radiations were Monday-Friday each week. My first treatment was Jan 27, 2020.

Because I had blood count issues after the fifth Chemo, I did not have any more. My doctor assured me that five treatments were the "Gold Standard" as far as Chemo was concerned and that the fact shouldn't bother me because they reached their goal after five.

I went through all the radiation treatments and finally, on March 17, 2020, I recieved my last treatment. 

Fast forward until today, Sunday, May 24 and I am nearing the end of 10 weeks post treatment and this is where my questions are put forth. I would appreciate any advice, tips or simply similar reactions and how you dealt with them. My taste buds are shot, and even if they weren't, my throat is still swollen and while I have no problem swallowing liquids, I still have trouble getting the pills down. My ENT says swelling is normal and after scoping me two weeks ago he said it was looking good. Also I'm having dry mouth and am taking mouth wash like Biotene (and Biotene toothpaste) to help. My strength is slowly coming back but I'm sure it would be better if I could get some real protein in me instead of the daily servings of Boost with some ice cream for calories. Hopefully someone out there can assist me in dealing with all this. I realize we are all different and heal differently but listening to others would be good therapy for me if nothing else. I salute all you survivors and fellow cancer victims who take the time to write and share your experiences. We are in a special club that none of us chose. Thanks to you all!

 

 

 

 

 

 

 

 

 

 

 

wbcgaruss

I Will Try

To answer some of your questions as best as I can. First, let me say that recovery from the radiation and chemo you and many of us have had is measured in weeks and months not days and weeks. For example, years ago I had a bout of pretty serious flu. It took me 5 weeks to recover from that. In cancer recovery, weeks translate to months so be patient and take each day at a time and one day you will notice an improvement in taste. Then you will notice that you are starting to swallow a little easier. I remember being concerned that I would never get off a feeding tube but months later I had it removed. I remember going to my ENT once a month and getting scoped, putting the scope up your nose and looking at your throat, and for probably 2 or more like 3 months at least he would say everything looks good and appears as such as it should for the treatments you went through but it basically looks like a cancer treatment area. It probably wasn't till about the third month after treatment that he felt I had finally turned a corner and was doing some serious healing and recovery. Remember that it is said that after radiation treatment is done we are still cooking so to speak and I guess that is to say it takes a little while for the cumulative treatment to actually stop. I not only had trouble getting pills down also but soon it was worse than that I could not swallow anything for a number of months and slowly I could finally start getting liquids through again. What a happy day it was for me when I could start swallowing again. Also my swallowing was not the best even after recovery so I had throat dilations to open my throat more. I had 4 and they can only go a little at a time so they don't have any throat tearing or damage as your throat is not as supple and flexible after radiation. You also have dry mouth, loss of strength, and probably some other things going on. Trust me it is just a matter of doing the best you can as far as activity, eating whether it be through a feeding tube or by mouth good nutrition will help you recover and getting the meds into you that are necessary. Whatever health you were in before the treatment you should be able to pretty much be able to return to it as this is really a glitch in life albeit a pretty big one. You may have some adjustments to make along the way and you may experience after-effects of your treatment such as in my case neuropathy, dry mouth, some mild tinnitus, or maybe none of the above as some come through with very few or no side effects. You may also have some and they go away with time, here again, patience and the passing of time is the key. I also remember when I was getting ready myself to go into treatment my rad doctor's nurse had a meeting with us to explain things and see if we had any questions. One thing she said to me in relation to my treatment that I have not forgotten is "You might as well figure this as a year off your life". In other words till you go through your cancer treatment and fully recover it will be approximately a year. You have your treatment in and are now devoted to recovery. I remember reading from someone and it was probably on here that as they were going to be in cancer treatment that they said "This is my job now" meaning till you are through it, treatment and recovery you are fully devoted to it. I never liked the Biotene products much I use the Squigle toothpaste with fluoride and you will have to brush more often now as the loss of saliva, lower flow, and swallowing, and the natural contents of the saliva are natural protection for our teeth and oral health. I was told to be as meticulous as possible with my teeth and oral health.  I also use a product prescribed by my dentist called Denta 5000 plus which I brush with each night before bed and you do not rinse only spit excess out as it has a higher content of fluoride and protects your teeth overnight. Also try Xylimelts for dry mouth a very good product and I believe are used by many on here. Here is a link to a search and you can buy them online if your local pharmacies don't stock them--https://www.google.com/search?client=firefox-b-1-d&q=Xylimelts Trust in God and pray a lot, be patient and easy on yourself and just let it flow because recovery is a slow process but it happens and you will be through it before you know it.

I know this is an extremely long-winded response but I hope it helps you in some way-Take Care-God Bless

Logan51

TW

Welcome to the world of H&N post-tx, most likely. Took me over a month before I dared, successfully, to eat pancakes w/syrup & butter. Trial and error, and gradual, for most of us. H&N is regarded to be the 2nd-harshest C treatment, but one of the most survivable; and, the tx side-effects are very much part of the harshness. Everyone is different, so I'm not going to get anymore negative and get into details about my past 11 years. Simply put, it takes time for the part of the body that got the Rads to heal as best it can.

As for the pills, I cut mine in half.

TangoWhiskey

wbcgaruss said:

I Will Try

To answer some of your questions as best as I can. First, let me say that recovery from the radiation and chemo you and many of us have had is measured in weeks and months not days and weeks. For example, years ago I had a bout of pretty serious flu. It took me 5 weeks to recover from that. In cancer recovery, weeks translate to months so be patient and take each day at a time and one day you will notice an improvement in taste. Then you will notice that you are starting to swallow a little easier. I remember being concerned that I would never get off a feeding tube but months later I had it removed. I remember going to my ENT once a month and getting scoped, putting the scope up your nose and looking at your throat, and for probably 2 or more like 3 months at least he would say everything looks good and appears as such as it should for the treatments you went through but it basically looks like a cancer treatment area. It probably wasn't till about the third month after treatment that he felt I had finally turned a corner and was doing some serious healing and recovery. Remember that it is said that after radiation treatment is done we are still cooking so to speak and I guess that is to say it takes a little while for the cumulative treatment to actually stop. I not only had trouble getting pills down also but soon it was worse than that I could not swallow anything for a number of months and slowly I could finally start getting liquids through again. What a happy day it was for me when I could start swallowing again. Also my swallowing was not the best even after recovery so I had throat dilations to open my throat more. I had 4 and they can only go a little at a time so they don't have any throat tearing or damage as your throat is not as supple and flexible after radiation. You also have dry mouth, loss of strength, and probably some other things going on. Trust me it is just a matter of doing the best you can as far as activity, eating whether it be through a feeding tube or by mouth good nutrition will help you recover and getting the meds into you that are necessary. Whatever health you were in before the treatment you should be able to pretty much be able to return to it as this is really a glitch in life albeit a pretty big one. You may have some adjustments to make along the way and you may experience after-effects of your treatment such as in my case neuropathy, dry mouth, some mild tinnitus, or maybe none of the above as some come through with very few or no side effects. You may also have some and they go away with time, here again, patience and the passing of time is the key. I also remember when I was getting ready myself to go into treatment my rad doctor's nurse had a meeting with us to explain things and see if we had any questions. One thing she said to me in relation to my treatment that I have not forgotten is "You might as well figure this as a year off your life". In other words till you go through your cancer treatment and fully recover it will be approximately a year. You have your treatment in and are now devoted to recovery. I remember reading from someone and it was probably on here that as they were going to be in cancer treatment that they said "This is my job now" meaning till you are through it, treatment and recovery you are fully devoted to it. I never liked the Biotene products much I use the Squigle toothpaste with fluoride and you will have to brush more often now as the loss of saliva, lower flow, and swallowing, and the natural contents of the saliva are natural protection for our teeth and oral health. I was told to be as meticulous as possible with my teeth and oral health.  I also use a product prescribed by my dentist called Denta 5000 plus which I brush with each night before bed and you do not rinse only spit excess out as it has a higher content of fluoride and protects your teeth overnight. Also try Xylimelts for dry mouth a very good product and I believe are used by many on here. Here is a link to a search and you can buy them online if your local pharmacies don't stock them--https://www.google.com/search?client=firefox-b-1-d&q=Xylimelts Trust in God and pray a lot, be patient and easy on yourself and just let it flow because recovery is a slow process but it happens and you will be through it before you know it.

I know this is an extremely long-winded response but I hope it helps you in some way-Take Care-God Bless

THANK YOU FOR THE REPLY

I don't feel there is a long winded reply when it comes to this subject! Your reply was much appreciated and very helpful. The fact that someone has gone through the same things and understands is a mental boost, if nothing else. Thank you so much for taking the time to help. I'm 68 years old and this is all new to me so anything I can grab onto to aid in recovery is a good thing. I've always been active and never felt like 68 until Cancer hit. Slowly getting my strength back and luckily I have not had a feeding tube to deal with. But sometimes I wonder if that might have been a better idea as I would get more nutrients in than my Boost and Ensure intakes daily. Like you say, I'll remain patient and move forward.

Thanks again!

TangoWhiskey

Logan51 said:

TW

Welcome to the world of H&N post-tx, most likely. Took me over a month before I dared, successfully, to eat pancakes w/syrup & butter. Trial and error, and gradual, for most of us. H&N is regarded to be the 2nd-harshest C treatment, but one of the most survivable; and, the tx side-effects are very much part of the harshness. Everyone is different, so I'm not going to get anymore negative and get into details about my past 11 years. Simply put, it takes time for the part of the body that got the Rads to heal as best it can.

As for the pills, I cut mine in half.

POST TREATMENT QUESTIONS

Thanks Dave K,

Appreciate you taking the time to write and offer support. I also cut the pills in half. In June I'll get a PET scan so hopefully that will continue the gradual recovery. Patience and faith seem to be the key.

Thanks again!

ERomanO

Hello TW, and welcome

You are just at the beginning of recovery and have a long way to go.  The individual physical makeup that got you through treatments will also determine how long it takes you to heal. Don't expect healing to follow a prescribed timeline.  At 2 years post tx I'm still experiencing improvements.  It's an ongoing process of change and adaptation.  Make the best of your life as you go on your journey to recovery and be aware that you may have little setbacks along the way.  Don't let them get you down, just make the necessary adjustments and keep going.  You may never get back to your old self 100%, but that doesn't mean that your new self can't be even better.

wbcgaruss

TangoWhiskey said:

THANK YOU FOR THE REPLY

I don't feel there is a long winded reply when it comes to this subject! Your reply was much appreciated and very helpful. The fact that someone has gone through the same things and understands is a mental boost, if nothing else. Thank you so much for taking the time to help. I'm 68 years old and this is all new to me so anything I can grab onto to aid in recovery is a good thing. I've always been active and never felt like 68 until Cancer hit. Slowly getting my strength back and luckily I have not had a feeding tube to deal with. But sometimes I wonder if that might have been a better idea as I would get more nutrients in than my Boost and Ensure intakes daily. Like you say, I'll remain patient and move forward.

Thanks again!

Boost VHC

Just to let you know in case you are using regular boost there is a VHC Boost (Very High Calorie) available 530 calories per 8 ounces serving but I have not seen it in stores. I purchased it online from eBay but there are many other places to get it from such as amazon Walmart, etc. I used it recently in dealing with my recent cancer recovery. Here is a link for a search I did and you can look at the information on it--  https://www.google.com/search?client=firefox-b-1-d&q=VHC+Boost  Take Care-God Bless

TangoWhiskey

wbcgaruss said:

Boost VHC

Just to let you know in case you are using regular boost there is a VHC Boost (Very High Calorie) available 530 calories per 8 ounces serving but I have not seen it in stores. I purchased it online from eBay but there are many other places to get it from such as amazon Walmart, etc. I used it recently in dealing with my recent cancer recovery. Here is a link for a search I did and you can look at the information on it--  https://www.google.com/search?client=firefox-b-1-d&q=VHC+Boost  Take Care-God Bless

BOOST VHC

Thanks. I'm already doing the Boost VHC. A scoop or two of Strawberry Ice Cream in that adds calories as well as a banana. I'm also doing some Chicken Broth and Mushroom soup. So I'm slowly adding to the diet. My wife also sends her thanks for your support. It helps when she can hear from others what I'm going through. How long have you been post treatment?

TangoWhiskey

ERomanO said:

Hello TW, and welcome

You are just at the beginning of recovery and have a long way to go.  The individual physical makeup that got you through treatments will also determine how long it takes you to heal. Don't expect healing to follow a prescribed timeline.  At 2 years post tx I'm still experiencing improvements.  It's an ongoing process of change and adaptation.  Make the best of your life as you go on your journey to recovery and be aware that you may have little setbacks along the way.  Don't let them get you down, just make the necessary adjustments and keep going.  You may never get back to your old self 100%, but that doesn't mean that your new self can't be even better.

THANKS FOR THE SUPPORT!

Thank you so much. I'll keep forging ahead and hopefully keep making progress. It is inspiring to see and hear the words of others who have gone through this. Because it is all new, I have many questions and this discussion group has already proved invaluable to me. THANKS AGAIN!

wbcgaruss

TangoWhiskey said:

BOOST VHC

Thanks. I'm already doing the Boost VHC. A scoop or two of Strawberry Ice Cream in that adds calories as well as a banana. I'm also doing some Chicken Broth and Mushroom soup. So I'm slowly adding to the diet. My wife also sends her thanks for your support. It helps when she can hear from others what I'm going through. How long have you been post treatment?

I AM Recovering From

Number 3. I had throat cancer in 2012-13 with lots of chemo and 35 rads. I had tongue cancer in 2018 and in 2019 September I was operated on for lymph node cancer and had an extended stay in the hospital and got home on November 4th of last year and had 30 follow up radiation treatments for that. I am feeling pretty good now with some minor issues. Click on my name under my picture and you can read my CSN Space. Also when you get a chance and would want to you can tell your story in your own CSN Space-Take Care-God Bless

wbcgaruss

wbcgaruss said:

I AM Recovering From

Number 3. I had throat cancer in 2012-13 with lots of chemo and 35 rads. I had tongue cancer in 2018 and in 2019 September I was operated on for lymph node cancer and had an extended stay in the hospital and got home on November 4th of last year and had 30 follow up radiation treatments for that. I am feeling pretty good now with some minor issues. Click on my name under my picture and you can read my CSN Space. Also when you get a chance and would want to you can tell your story in your own CSN Space-Take Care-God Bless

I Apologise TangoWhiskey

I see you already have your treatment info listed in your CSN space-My mistake I should have looked first before typing it-Take Care-God Bless

motorcycleguy

Tango,

It sounds like you and I had the same treatment. I am now about 10 months after finishing chemo and a year from radiation.

The taste and ability to eat come back slowly. AT 10 weeks, I seem to recall that eggs, over easy, was one of the few things I could eat.

I lost weight for about 3-4 months, and then it stopped.

Anyway - I am at the point now where some food still tastes "faded" - but there are some things that taste pretty good now. I lost 45 pounds at one point, but I'm back up about 25 of that. (I'm actually thinking I wouldn't mind dropping 5 of that.)

I feel for you, because it's tough. But, things like taste and saliva improve, and swelling fades. You WILL get back to a much more normal state!

Hang in there, buddy - I'm wishing the best for you!

mg