Post treatment, how long does it take to feel good?

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needhope1
needhope1 Member Posts: 29
edited March 2014 in Head and Neck Cancer #1
My husband finished 8 weeks of chemo, and 8 weeks of radiation with chemo about 2 weeks ago (diagnosed with stage IV tonsil cancer). I believe the doctors said he will still be suffering the effects of treatment for 2 months after stopping. He is still suffering from fatigue, loss of taste, mouth issues.

When did you really start feeling "better" post treatment?

Thanks friends.

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  • ratface
    ratface Member Posts: 1,337 Member
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    My circumstances
    I'm fifty and finished 39 rads and 8 weeks of chemo about two weeks ago. I was in reasonably good shape prior. Went jogging several times a week and did aerobics at home. The first week post I was without any energy and took midday naps. Still very anemic and low energy. My second week I was able to start the 30 min of aerobic activity at home. Took a three hour nap the first time. Now I can make it throught the day without napping. Energy is much better and I'm feeling stronger every day. I still get my 2000 calories a day with jevity but try and eat something normal once a day, like soup or just a taste of what the family is having although most of it has little taste.

    It will depend at what level of activity you were at prior to starting as well as any other physical ailments you may have as well as age as well as just wanting to do something. Best of luck to him. Taking walks is a good start.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Feel Good
    Welcome....

    Two weeks is pretty short. At two weeks I was still taking the pain solution just to drink water and Ensure.

    I'm 55 just recovering from Tonsil Cancer as well, stage III SCC HPV related. I finished 9 weeks of chemo and the 7 weeks of concurrent chemo and radiation (35 exposures)....finsihed those the 18th of June 2009.

    I never had a feeding tube and only had about 4 weeks where the treatment really was bad, the last two weeks of the radiation and the following two weeks after that.

    During the last 3 months I have had just "normal" fatigue, no taste, no saliva, and various aches, pains and discomforts in my mouth and throat.

    This last few weeks I am getting taste back. I can taste most everything other than sweet is lagging. Most of the taste deminishes rather quickly though once I start eating.

    This week I have actually started feeling good, which has been missing since early January when first diagnosed and treatment started.

    I do have swelling under my chin and neck that I guess is a form of lymphedema. At this point I'm not sure if it's something that's going to be long term or temporary.

    I'm sure he'll be getting stronger and feeling better in the weeks to come.

    Good Luck and God Bless,
    John
  • CajunEagle
    CajunEagle Member Posts: 408
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    I completed my Chemo (12 weeks) and Radiation (35 straight days) on June 6th, 09....D Day. I was diagnosed with left tonsil cancer. I'm 62, and was in pretty good shape prior to the "Thing". I still have my peg tube that I use at least 3 times a day, but have begun eating soft foods. For some reason, within the last week, I have most of my taste buds back and am nuts about eating anything now. I realize that may not be possible due to my Epiglottis not closing but only 95%. Must be careful not to have too much go down the ole windpipe. Two days ago, I woke up and felt great. Yesterday....so-so. Today I woke....had a Two Cal in the tube...and then commenced to throw up. Go figure. So feeling good to me, is a day to day thing. I've got a personal trainer that comes to the house 3 times a week just to help me rebuild my strength. She has really helped. I've began to tolerate most spices in foods now, and thank goodness, being from South Louisiana, the only thing I could eat would be dirt. Everything here is loaded with spices.

    Good luck to you.
  • rduinc
    rduinc Member Posts: 1
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    Post treatment, how long......
    Two months seems about right. I had 8 weeks of chemo and 8 weeks of radiation last summer. The dr. told me my body would continue to "cook" for a week or two after radiation ended, and he was right. Radiation ended, but I didn't improve for awhile,and the improvement I had was slow. Every day I tried to exercise a bit more than the day before, and tried to improve my eating.

    Needhope, hope and help is right around the corner, and it's called TIME. I never thought last summer would ever end, and yet, here it is already a year after. The same thing will happen for you and your husband. The joy you will feel when your husband starts to feel better is indescribable. The improvement is slow at first, then will speed up, and at some point you'll marvel that it's behind you. I'm sorry you have to go thru this, but it will make you stronger. I just ran my first marathon and mentally I had no problem finishing because over the last 5 miles, when my body was breaking down, when everything hurt, I could tell myself, "I've been thru worse".

    Please let me know if you have any other questions, keep up the hope!!!
  • pk
    pk Member Posts: 192
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    rduinc said:

    Post treatment, how long......
    Two months seems about right. I had 8 weeks of chemo and 8 weeks of radiation last summer. The dr. told me my body would continue to "cook" for a week or two after radiation ended, and he was right. Radiation ended, but I didn't improve for awhile,and the improvement I had was slow. Every day I tried to exercise a bit more than the day before, and tried to improve my eating.

    Needhope, hope and help is right around the corner, and it's called TIME. I never thought last summer would ever end, and yet, here it is already a year after. The same thing will happen for you and your husband. The joy you will feel when your husband starts to feel better is indescribable. The improvement is slow at first, then will speed up, and at some point you'll marvel that it's behind you. I'm sorry you have to go thru this, but it will make you stronger. I just ran my first marathon and mentally I had no problem finishing because over the last 5 miles, when my body was breaking down, when everything hurt, I could tell myself, "I've been thru worse".

    Please let me know if you have any other questions, keep up the hope!!!

    rdunic
    What a great reply. My husband finished his rads a week and a half ago - still on some pain meds - trying to do more each day - napping in the afternoon - food is still painful to swallow, BUT as each day goes on a little corner is turned. And as you say, once you've been thru this - what else is there?!!!!!
    PK
  • naturenaw
    naturenaw Member Posts: 26
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    pk said:

    rdunic
    What a great reply. My husband finished his rads a week and a half ago - still on some pain meds - trying to do more each day - napping in the afternoon - food is still painful to swallow, BUT as each day goes on a little corner is turned. And as you say, once you've been thru this - what else is there?!!!!!
    PK

    It can take time to bounce back
    I just wanted to let you know that for some people it can be quicker than others. For me, I felt better right after the radiation but then as someone else put it on here, after I "cooked for a while" and the radiation continued to work it's magic on the cancer and fried me more, I was in much more pain weeks after radiation than while I was in treatment. It was 6 months post-treatment before the pain even slightly started to subside for me. Doctors said this was much slower than should be expected. But it can take a varying amount of time, depending on the individual. Slowly but surely my pain subsided and getting off pain meds happened slowly but surely and I hope it will be quicker for your husband. I hope he's doing better already!
  • Scambuster
    Scambuster Member Posts: 973
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    Update
    HI Needhope1,

    Was curious about yr husbands progress and how he is doing now. He should be about ~10 weeks out from treatment now.

    Any feedback would be appreciated.

    Best regds
    Scambuster
  • Kitkat.tulsa
    Kitkat.tulsa Member Posts: 7
    edited July 2018 #9
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    Post Chemo Radiation

    My husband had stage 4 neck and tongue cancer and had two lymph nodes in his chest.  He did 35 rounds of Radiation and Chemo and the PET scan is clear but has two very tiny lymph nodes in his neck that they are watching.  He is really struggling to gain weight.  He eats alot most of the time and will drop weight.  Typically he was 210 and down to 182.  He is about 13lb down from when he stopped treatment in March.  His fatigue is horrible.  He will sleep 11-12 hours, get up and eat and nap a few more hours.  if he tries to do anything outside he will be back in napping again.  It just does not seem to improve.  Anyone else have this?

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    it is always something

    Kitkat.tulsa,

    Why yes, I went through some of the same side effects stages that your husband has encountered.  Eventually, they determined that my Thyroid went south and I now take a supplement for that.  I have had my blood check by  a Endocrinologist and it was determined to be normal.   It took 7 months for me to get back to eating normally and my weight gain followed my diet from a high of 218lbs PRE-C to 171lbs POST-C and back up to 191lbs 6 YEARS-C.

    He will need to dedicate himself to getting up and moving around.  Believe me, he will feel better after a while.  He needs to get the correct nourishment and to have ALL his important systems for “everything normal moving forward”.

    He will get there, he just needs to get in the game and get there sooner.  Don’t be a slug, how are we going to take on the other forums this summer in baseball if we don’t get it together now.

    Matt

    This post has been on here for 8 years and  9 months and I do know that ratface, Skiffin16,  and Cajun Eagle are all doing well today (I hope).

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Fatigue

    Kitkat,

    Matt touched on what I was going to say, fatigue is caused by several things, treatments, lack of proper nutrition, calories and failure of the Thyroid. You did not mention how long your husband is out of treatments. We "Cook" from anywhere between 4-8 weeks after our final treatment. If he is in that time frame, he will slowly and I do mean slowly recover. That also depends on his activity.

    After eating, he needs to go for a walk, stretch those body parts and if tired, now has a reason for a nap. If his weight is comfortable at 210 and he wants to get back there, multiply that by 12. 210 X's 12 =2,520 calories per day to maintain that weight. To gain weight, eat 500 more calories per day, to lose weight, eat 500 less calories per day. 

    Bloodwork, when he gets his bloodwork done, have his Thyroid (TSH) levels checked as well. My Oncologist told me that it wasn't a matter of "IF" my Thyroid would Fail, but a matter of "When" it would fail. Like Matt, I am on medication to handle that which helps with our Fatigue. My Thyroid lasted for several years before I went on it due to fatigue, some are only out of treatments a few months and have to start taking medicine for it. I'm on Levothyroxine, it is a generic medicine and not costly.

    My Best to Both of You and Everyone Here

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    There's both physical and

    There's both physical and psychological recovery, and for me they happened at different rates.  My last treatment day was 3 January.  By April I was aware that physically most of my obvious trauma was gone, mucusites was over, neck burns had healed, I was off oxygen and walking unassisted.  I almost cried when my wife shared part of her sandwich and I realized I could actually taste the turkey.  I knew from that I would get at least part of my taste back.  Up until then I had been getting by on nutrition shakes and chicken broth.

    By June I was back doing lighter duty paleontology fieldwork, moving rocks and digging holes, but I also cancelled an advanced small sailboat racing class because  my confidence was shot, and I knew it would involve sailing in rough weather. I've also whitewater canoed, kayaked, and rafted for decades, but the prospect of a swim was something I couldn't face.   By December I was skiing again, enjoying the fact that I now weighed 40 pounds less than two years earlier, but it was on easy slopes where I was unlikely to fall because my confidence in being able to take a licking and keep on ticking was way, way down.

    I just logged my 18 month post checkup.  I spent the last month moving a few tons of flagstone and dirt in 90 degree heat, joining my dork son as he once again turned our racing dinghy turtle (he rolled it, he had to right it, when it came up it left without him.  I was too busy laughing to help), and generally feeling 'good'.  Grim news is river flows here 'bout are so low that I haven't even looked at my ww boats, but if I wore my high-float PFD I think I would survive.  A year ago I thought I might never be able to run rivers again. 

    I'm on the scale every morning and evening.  That 40 pounds is not coming back.  Not an ounce.

  • Kskokko
    Kskokko Member Posts: 42
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    There's both physical and

    There's both physical and psychological recovery, and for me they happened at different rates.  My last treatment day was 3 January.  By April I was aware that physically most of my obvious trauma was gone, mucusites was over, neck burns had healed, I was off oxygen and walking unassisted.  I almost cried when my wife shared part of her sandwich and I realized I could actually taste the turkey.  I knew from that I would get at least part of my taste back.  Up until then I had been getting by on nutrition shakes and chicken broth.

    By June I was back doing lighter duty paleontology fieldwork, moving rocks and digging holes, but I also cancelled an advanced small sailboat racing class because  my confidence was shot, and I knew it would involve sailing in rough weather. I've also whitewater canoed, kayaked, and rafted for decades, but the prospect of a swim was something I couldn't face.   By December I was skiing again, enjoying the fact that I now weighed 40 pounds less than two years earlier, but it was on easy slopes where I was unlikely to fall because my confidence in being able to take a licking and keep on ticking was way, way down.

    I just logged my 18 month post checkup.  I spent the last month moving a few tons of flagstone and dirt in 90 degree heat, joining my dork son as he once again turned our racing dinghy turtle (he rolled it, he had to right it, when it came up it left without him.  I was too busy laughing to help), and generally feeling 'good'.  Grim news is river flows here 'bout are so low that I haven't even looked at my ww boats, but if I wore my high-float PFD I think I would survive.  A year ago I thought I might never be able to run rivers again. 

    I'm on the scale every morning and evening.  That 40 pounds is not coming back.  Not an ounce.

    sailing

    drop me a private message and we can talk about sailing post-cancer

     

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    I developed pulmonary

    I developed pulmonary embolisms during cancer treatment.  That little side-effect was a major part of recovery, with a year of an injection of Lovenox into my belly every day at noon.  Lovenox and Warfarin are not 'blood thinners', they are anti-clotters, so if I wacked my self and bled I did rather a fair amount of it.  That made encounters with river rocks sort of iffy, made dumping my small motorcycle non-trivial, and I also got lots of lectures on sepsis risk, bleeding out, age appropriate behaviours, etc.  Actually sailing itself was fine, I borrowed a Capri 14.2 and did a few days of easy mid-day putz boating.  Winds on the Denver area lakes are stable and low, 5-7 kts, until about 4PM.  Our racing usually starts around 6PM, and includes gusts up to 17kts which change direction constantly.  My little Holder daggerboard boat has a planing hull.  It screams along until about 11kts, above that you scream, because it has zero secondary stability. 

    Dr Dork (my son), seems to have lost some steps in the process of completing medical school.  Concepts like Points of Sail, Lee and Windward, actually reading his wind direction indicators now are not in evidence.  Even don't cleat down the main sheet in gusty conditions escapes him.  But, I run rigged for all that (I've sailed with him before, there is a pattern...), doesn't take much to bring it back up.  Even has a righting line at the base of the mast, which if you hold on to, allows you to maintain contact with the boat while you use the rope-ladder on the fantail.  All of that also escapes him, tho he has received clear and unambiguous instruction on their presence and use.  Him and another ER resident seem to have joint-ventured on acquiring an old16' Hobbie Cat.  That should be educational.

  • momall25ofu
    momall25ofu Member Posts: 81 Member
    edited July 2018 #15
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    My husband is the one with

    My husband is the one with the oropharyngeal squamous cell carcinoma HPV.  As his wife, I'm doing the research and seeking advice and answers.  He has opted for robotic surgery to remove the cancer from behind the oropharyngeal wall.  He wants it OUT.  The surgeon said they'll strip all the lymph nodes on the lefft side of his neck at the same time, by hand.  His surgery is August 16th, then he'll have to wait four to six weeks for the radiation and chemo.  I'm praying he's made the right decision.    Has anyone on here had the robotic surgery?