Getting back to "normal" after treatment

Hi Hubby finished his radiation treatments almost 3 weeks ago had a rough go of it towards the end and after not eating for almost 2 weeks went ahead and had his peg tube inserted with a week and a half left of treatment , a few days after the peg was placed he ended up with a massive blood clot in his lungs (1 giant clot branching into both lungs) it almost killed him. Spent a week in the hospital with that and will now be on Lovanox shots for 6 months. He is becoming quite depressed because he is not feeling any better at all yet I know it takes awhile and especialy with this blood clot on top of everything But I wanted to see what was the general time for things like taste to come back (his biggest hurdle to eating) the severe pain and scabbing in his throat saliva to return and severe fatigue. He is still taking nothing by mouth but water and tea all food is what we put in the peg he is no longer loosing weight but not gaining either. I know that everyone is different and there is no set time frame to turning around but I wanted to hear some of your experiences.

Cry Christy

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    christy, i'm sorry ur hubby

    christy, i'm sorry ur hubby is having such a rough time.  3 weeks is not long to b out of tx.  unfortunatey, it usually takes 2 - 3 months to see some real improvement.  at least thats what it was for me.  ur hubby will probably take a little longer since he had that serious illness w/his lungs.  i hate to say it b/c hes been thru so much, but he will have to b a little patient and give himself some time to heal.  i will b praying for both of you.

    God bless,

    dj

  • jim and i
    jim and i Member Posts: 1,788 Member
    Christy, you are right,

    Christy, you are right, everyone is different. I have seen people on here eatting and feeling great in a month (usually younger patients). My husband is in the opposite extreme. He ended treatment in August, had a shunt put in brain in November and his appendix and part of the lower and upper intestines removed in January. The appendix and intestine removal was a result of ongoing constipation from chemo and pain meds. Two years later he is still on his peg tube since swallowing and taste are still a problem. These are the extremes, most are inbetween these examples. Sorry I could not be more specific but I hope your husband is on the fast side. And the side effects do get worse before they get better. He will take two steps forward and one back for awhile. I think the average for taste and saliva is about 1-2 years.

    Hope this helps a little.

    Debbie

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    The story of Rarph

    Rarph is a guy who is in his late seventies.  He posted a lot on the board almost two years ago, very ill, weight down to 112, sounded like he wanted to die.  Lots of posts, lots of extremely unpleasant times.  He went off the board for months and months,  I thought he maybe had died.  Rarph posted here a handful of months ago, about how well he was doing.  About the fact he could eat again, and had back some saliva-- one year after treatment.  About how great life was and how much he was enjoying just doing family things.  Rarph made  it.   You guys will too.  It can be really dark for quite awhile, but each day is aother step toward better.

     

    best to you

     

    Pat

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    "new normal"or "abi-normal

     

    Christy,

    For me it ALL is getting better!

    Taste is good to marginal, saliva is fair to good and is much improved and my fatigue is still persistent, but improving.

    I sleep great and eat anything I want (now).  Even though I tried foods constantly post treatment, I pretty much lived on smoothies for 7 months, I just could not stand the feel of most foods.  Those days are behind me and just a footnote in my path to recovery.

    Tell your hubby to keep swallowing and to set his improvement clock to slow.

    Matt

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Patience

    Hi Christy,

    Remember, he's still "cooking" from treatment. This period, the first few weeks after treatment ends, is as bad or worse than the last few weeks of treatment. I got my PEG the last day of treatment, literally two hours after my last treatment. 

    Everyone is different but give it a month to 6 weeks before you'll start to see some improvement. Realistically it will be 3 months to 6 months to see some noticable improvement.

    I'm going on 6 months post treatment and I'm just truly beginning to feel better. I never lost my taste but eating and swallowing has been a challenge for some time. I can eat pretty much everything now but need lot's of water to swallow. Saliva is about 70% . His taste and saliva could be up to a year or more before he knows what will be normal. 

    Patience is key. Keep doing the swallowing exercises!

    Positive thoughts and prayers.

    "T"

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    Christy....at "almost 3 weeks"

    he is in the infancy stage of heading towards normal....what I learned on here was that we finish radiation and then cook for another two weeks at least.  I finished treatment the end of August last year....was back to work by the middle of October, and had my tube until the end of November.  I was exhausted most of the time, and my eating consisted of soups....most of which I could only taste for 2 bites.  By the end of January, I was less fatigued....and I could taste food for 5 bites, and I could lick my lips!! Laughing  Things DO come back....for some more quickly than others....

    Tell him that at this juncture....not even 3 weeks out of treatment....NOBODY felt good yet!!  Gotta celebrate the small things....for me it was not having to get up and get dressed and hauled to radiation every damn day....I got good and sick of that schedule! 

    I'm sorry he had to suffer a blood clot to go along with treatment....scary stuff!! 

  • yensid683
    yensid683 Member Posts: 349
    normal - it will get here

    But it takes a while

    I was SCC, BOT stage IVa and had the whole spectrum, induction chemo, 33 rads with weekly erbitux and at three weeks post I felt awful.  Lots of pain, choking mucus, difficulting swallowing anything let alone food.  The one 'bright' spot was that I'd had the PEG tube inserted before rads started so I could get some nourishment and fluids.  I tried to do food by mouth, about the only thing that worked was warm whole milk, maybe some jello or soup.  I wasn't until about 2 months after rads ended that I could do soft foods, but even then it was a challenge, I didn't want to eat, taste was so faint that food was disgusting (it's amazing how something you like can seem so bad when there is so little taste).  It was about 14 weeks after rads that I was able to start eating regular, solid food and that was an exercise in balancing sips of water and bites of food.  The good thing was that once I started eating regular food it was just a couple of weeks and I was able to lose the PEG and get closer to normal.

    Oh, and I too had a post rads blood clot, not as severe as your husbands, my port caused a clot in my right jugular and I too was on lovenox, though for not as long.  It was decidely creepy to stick myself in the stomach with that twice daily shot. 

    The point of this rambling response mirrors what my fellow survivors have already posted - it takes time.  Much more time than recovering from a sunburn or even a fractured bone. 

    I'm 15 months out of rads and am almost back to normal.  Saliva keeps slowly (and I do mean SLOWLY) improving, I'd estimate that it is about 60% of what it was.  Taste is back with sour being the only one that is tough to do. I also need to be careful in the sun, lots of sunblock on the skin between the top of my ears and collarbone and the wide brimmed hat, but I'll live with it.

    As a good friend of my says  "leaves, not roots".

    Here's hoping that hubby is soon feeling better, just remember that it is a slow process. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Shouldn't Be Long..

    But like you are already aware, each are different...

    Three weeks is early, more than likely it's in the 6 - 8 week range for much of anything noticeable. And even then, more than likely it's not going to be that great for awhile...

    Unfortunately, taste and saliva are one of those things measured in weeks and months... A little improvement over a long time..., but it more than likely will happen.

    For me it took nearly two years to completely come back, but I could taste and had enough saliva to survivor comfortably after 4 - 6 months if it had never improved.

    Hang in there, it'll come...

    John