4 months out from treatment and side effects

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Traveler419
Traveler419 Member Posts: 5
edited October 2017 in Head and Neck Cancer #1

I was diagnosed in March 2017, went through 7 weeks radiation and 3 cycles of cIsplatin and had my 3 month PET and all is clear. During treatment I worked and immediately after was in the office full time. I wasn't feeling well,but powered through and did what I could each day. 

It's now 4 months after last radiation and I feel like I've gone backwards. Fatigue, generally not feeling well, stomach upset, and more and doctor attributes it to jumping back into work so quickly. Everything from blood work to scans looks perfect so not sure what's going on here. I feel like I'm a long way from my old Type A super high energy old self and trying to understand when that will return. 

My team at Sloan Kettering has been great, but it seems that even they don't have all the answers. I'm thankful for the current status of my cancer...no signs!  But also need to adjust my expectati9ns if this is some kind of 'new normal'?

thanks in advance. 

 

Mark

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    welcome.. shoot for the moon

    Hi Mark,

    Welcome to the H&N forum, I am glad you have been so very successful in your treatment.  If all your systems check out as fine, then you probably do just need additional time to recover.  If your work is very physical then I would expect to see a lag in stamina.  To be honestly truthful, it is a unique and few H&N members who have traveled all the way back to “old normal”.  Most recover to a happy medium with their new self.  After all, in your old self there was probably excess, unused energy, so you might land in a good place after all of this.

    You will want to keep an eye on your thyroid; many of us are now on meds for this.

    There are a lot of Type A H&N members and you are probably one of them.

    Good luck.

    Matt

  • Traveler419
    Traveler419 Member Posts: 5
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    CivilMatt said:

    welcome.. shoot for the moon

    Hi Mark,

    Welcome to the H&N forum, I am glad you have been so very successful in your treatment.  If all your systems check out as fine, then you probably do just need additional time to recover.  If your work is very physical then I would expect to see a lag in stamina.  To be honestly truthful, it is a unique and few H&N members who have traveled all the way back to “old normal”.  Most recover to a happy medium with their new self.  After all, in your old self there was probably excess, unused energy, so you might land in a good place after all of this.

    You will want to keep an eye on your thyroid; many of us are now on meds for this.

    There are a lot of Type A H&N members and you are probably one of them.

    Good luck.

    Matt

    Thx

    I keep reading the 'new normal' responses and the issue is the business I'm in.  It requires heavy travel and it seems my **** gets kicked for several days after. It doesn't help that it's my business and I have 70 employees to pay every 2 weeks. Is there any data on the percentage of survivors who suffer long term fatigue related issues?  It seems to be all over the place, but I've seen where upwards of 30-40% express this. My job is also high stress and I do notice my body taking 'a hit' on days that are crazier than usual. 

    If how I feel today is the long term prognosis then I'll have to take steps to fill parts of my previous role. Any thoughts in that regard would be appreciated. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    H&N recovery unknown

    Mark,

    I do not have statistical data either up or down on survivor energy levels following treatment.   I am sure they exist, but you may have to spend time with doctor Google for them.

    Most members see improvements to energy, taste, dry mouth, etc. over a long period of time (many months if not years). I am happy for members who do well and feel sad for those who don’t, but there isn’t anything I can do about it.  The way you feel today may not reflect the way you will feel in a year.   Take good care of yourself, eat right, be a good steward of your body and maybe you will be paying 100 employees every 2 weeks.

    Matt

  • Dean54
    Dean54 Member Posts: 160 Member
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    Matt, you give solid and

    Matt, you give solid and sensible advise and I for one appreciate reading your posts.

    Since I am just starting treatment I can't give any solid advise except listen to your body and don't push it. I think always being on edge and too many stimulants over the years contributed to my cancer and believe me, if I get thru this I WILL learn how to relax and take life easy.

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
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    Echo Matt

    Mark, 

    I will echo Matt with keeping an eye on your Thyroid levels (TSH). We get hit with the Radiation that can cause our Thyroid to fail, mine lasted nearly 5 years before it failed and as Matt mentioned, I am on a generic med for it and it helps with my energy. 

    My RO told me that the Radiation can cause Fatigue issues for roughly 1 year or a bit longer, I fell into the bit longer group, but steadily got more energy the further out from treatments I got. Now I am 70 and still split wood by hand or log splitter, which ever I am in the mood to do. As mentioned, listen to your body. 

    My Best to You and Everyone Here

  • phrannie51
    phrannie51 Member Posts: 4,716
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    I didn't work during treatment,

    but did have to go back with little recovery time between the end and the first day back.  It was an ***kickerfor the first 6 months (I worked graveyard for the electric company)....all I did was work and sleep.  It took about a year from the end of treatment till I felt "normal".....a new normal, but it had a strong resemblence to my old normal :).  

    I think we forget, that we just didn't get over a bout of the flu, and we're better now.  Caner tried to kill us, then the Drs. damn near kill us....even with good blood work, the body has a lot of healing to do, and that sucks energy out of the things we want to do.  

  • Traveler419
    Traveler419 Member Posts: 5
    edited October 2017 #8
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    Thanks

    for all of your help!

  • donfoo
    donfoo Member Posts: 1,771 Member
    edited October 2017 #9
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    Pretty normal

    Honestly, it sounds like you are expecting more than your body and mind can support at the moment. Start developing some short term tactics to ease your travel schedule. There is no "relapse" of cancer related to doing too much too soon but it may slow your long term recovery. Maybe it is time to reflect more long term about delegating more to others and enable others to stretch more in their responsibilities. 

    Most everyone has a new normal, a few return barely worse for wear, others are permanently in a very different place. Nobody can predict where you land. Remain hopeful and keep your sights high but listen to your body and mind and at least for the first year, let it be your guide. This is not a mind over matter exercise. There is no way to power or will your way back. Good luck, don

  • Andy13460
    Andy13460 Member Posts: 115
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    16 weeks out this Wednesday

    Im 57 years of age, 16 weeks out of treatment nearly. I have run every day since 3 weeks out, clocked up 50 miles last week and have my first marathon of the year in 3 weeks time. I took 6 weeks before i went back to work. Im making sure my new normal is my pre cancer treatment normal, at the moment Im looking at a 3:30 marathon in 3 weeks time which is about 25 minutes slower for me but getting there. I just belive high levels of exercise make me stronger and help the recovery process.

    I eat anything put infront of me, mouth is a little drier than it used to be but i drink plenty of water.

    best of luck

    Andy

     

  • Traveler419
    Traveler419 Member Posts: 5
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    Andy13460 said:

    16 weeks out this Wednesday

    Im 57 years of age, 16 weeks out of treatment nearly. I have run every day since 3 weeks out, clocked up 50 miles last week and have my first marathon of the year in 3 weeks time. I took 6 weeks before i went back to work. Im making sure my new normal is my pre cancer treatment normal, at the moment Im looking at a 3:30 marathon in 3 weeks time which is about 25 minutes slower for me but getting there. I just belive high levels of exercise make me stronger and help the recovery process.

    I eat anything put infront of me, mouth is a little drier than it used to be but i drink plenty of water.

    best of luck

    Andy

     

    That's Fantastic

    I've been following a similar path, and feel that difference, as I'm sure you do.  Thanks for sharing and good luck with getting back t that old time.  

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    I'm with Phrannie on this. 

    I'm with Phrannie on this.  We got hit pretty hard, but especially pretty fast, and we tend forget or misunderstand how hard that hit was.  I personally had no other experience to measure it against.  At 10 months post I am finally getting back to my old energy level.  I have done lots of things in those 10 months including travel and geologic field work, by no means was inactive, but have also been sleeping 10-12 hours at night and still dropping off for naps during the day.  It's actually a quite civilized activity that afternoon nap.

  • Mavish
    Mavish Member Posts: 84 Member
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    Just wanted to ahare my

    Just wanted to ahare my experience. My treatment is completed about 18 mo ago. I got nouth ulsers after a month after the treatment, which was called late radiation complication. I had been a go getter who works long hours. My energy level is still not in the pre treatment level. But slowly gets better. Not as fast as I wiahbfot, though. For a long time, Islept 12 hours a day and in additionnI had long napa during the day. Now I am back at work, I sleep less, but most of the mornings I wake up tired. 

    There is a fatigue clinic in my hospital. They look at blood tests for anemia, thyroid hypofunction, etc.. and phycologic issues..

    Their suggestions are regular physical excercise, taking small breaks during day before start feeling tired, good nutririon and sleep hygene. 

    I have learned to listen to my body, and find a compromoise between what my brain wants to do and what my body allow me to do. 

    Hope helps

     

  • OKCnative
    OKCnative Member Posts: 326 Member
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    Mavish said:

    Just wanted to ahare my

    Just wanted to ahare my experience. My treatment is completed about 18 mo ago. I got nouth ulsers after a month after the treatment, which was called late radiation complication. I had been a go getter who works long hours. My energy level is still not in the pre treatment level. But slowly gets better. Not as fast as I wiahbfot, though. For a long time, Islept 12 hours a day and in additionnI had long napa during the day. Now I am back at work, I sleep less, but most of the mornings I wake up tired. 

    There is a fatigue clinic in my hospital. They look at blood tests for anemia, thyroid hypofunction, etc.. and phycologic issues..

    Their suggestions are regular physical excercise, taking small breaks during day before start feeling tired, good nutririon and sleep hygene. 

    I have learned to listen to my body, and find a compromoise between what my brain wants to do and what my body allow me to do. 

    Hope helps

     

    I'm only 3 months post

    I'm only 3 months post treatment, but I suffered fatigue and neuropathy in my legs. I am a work-a-holic and also maintain our 2.5 acres. I do not like taking medications, so my doctor told me to get back in the gym. I gotta say, after just two weeks of working out daily, I feel much better. No more naps, fatigue is all but gone and the numbness in my legs is hardly noticeable.

  • lewcap
    lewcap Member Posts: 23
    edited December 2017 #15
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    slow recovery?

    Needed all the posts today.I hadn't understood about thyroid issues until my own tests came back, and I've truly suspected that my doctors were talking gibberish when they mentioned a full year of healing. And, I got up today with a temp over 101 and a cold and wonder whether the radiation and everything else makes us vulnerable to illness.??? I sleep less than even a month ago but haven't much energy. Just reporting, I guess, but please reply about radiation and post treatment illnesses. Thanks