8 weeks post treatment

PapaPaul
PapaPaul Member Posts: 33
in Head and Neck Cancer #1

Hi all my appologies for it being so long since I've posted! It's been a rough 8 weeks. My second week out of treatment I ended up in the hospital for 5 days due to malnutrition and a reaction to one of the drugs I was on. A week later I was back in the hospital for 6 days for failure to thrive ( a fancy way to say that I wasn't getting better). My throat was so sore, I couldn't eat and I couldn't get enough nourishment through my PEG to allow my body to heal. Needless to say I was in no mood to post anything. I did read what others were posting on a daily basis though. I think I have finally turned the corner, I am feeling much better, I am able to use the PEG for my nourishment and am staying well hydrated. I also have finally started to eat some things by mouth. I've been lucky, my sense of taste has started to return, I am able to taste sweet and salty things, however my throat is still sore and I have very little saliva. What I am able to take by mouth is chased by large amounts of water. I still have bad days where I don't even want to get out of bed, then I have good days when I feel much better. This week has been a fairly good one. On Tuesday afternoon I have my first post treatment CT. I'd be lying if I said I wasn't nervous. My advice for others going through this; For those of you fresh out of treatment, don't expect everything to get better immediately, healing takes time and improvement should be measured in weeks not days. Hang in there things do get better. I appreciate all the information and openess you all provide. The personal experiences and information you share are invaluable in helping us all cope with this monster. It helps up realize we can beat this and things will get better. Thanks again and as always, my thoughts and prayers are with you all.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    heal on

    PapaPaul,

    Sounds like you got all of the bad finished up-front (and quickly). NOW, you can start the real healing.  As you know, stay on top of things and keep pounding away.  Don’t forget to ask your H&N friends questions, we are full of it.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Now that you've got the real

    tough part of healing out of the way, it's good to hear you're getting to start of the more fun things...like eating real food!!  It really does take a while to get back to thinking "wow, I really AM getting better".  I still am more tired than I ever was before....when my weekend comes, I sleep 11 or 12 hours....that never happened in the past. 

    Glad you're finished and have such a great attitude for the healing process.

    p

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #4
    Through the grinder...

    Hi P Paul,

    Wow... you certainly were put through the grinder on your recovery. Glad to hear you're on the mend. Keep up the hydration and nutrition and continue to heal.

    I'm two weeks out and fortunately I'm making progress, albeit very slow. How long was it until your mouth started to feel better? My throat feels pretty good but the burns/sores in my mouth are still giving me fits. I've not had anything but water by mouth for at least three weeks or so. 

    Positive thoughts and prayers

    "T"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Press On...

    Glad you are on the mend....

    Hopes for a lot of continued improvements, and long term success...

    John

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #6
    Same Almost

    First its great that your taste is coming back and that you can eat some solid foods.  Keep experimenting with different foods, at least that is what I had to do and am still doing.  Taste for me is coming back very slowly, sounds like you are ahead of the game.  Tried sounds exactly like what I went though and to some degree am still going though.  Reovery is a long process and I wish I understood that more so it would not be such a shock to me.  Maybe I understood that but thought I would be different.  Hang in there your doing great.

  • donfoo
    donfoo Member Posts: 1,773 Member
    #7
    Thanks for the update

    It is always good to hear from folks on the same journey, just wish things were a bit kinder for you but it is good to know what is in the realm of reality for us. Some glide over most of the nasties but most of us get splattered with some aount of bug juice. Take care. don

  • hwt
    hwt Member Posts: 2,328 Member
    #8
    donfoo said:

    Thanks for the update

    It is always good to hear from folks on the same journey, just wish things were a bit kinder for you but it is good to know what is in the realm of reality for us. Some glide over most of the nasties but most of us get splattered with some aount of bug juice. Take care. don

    Over the hump

    Sounds like you are on the mend after a very tough go of it. Try milk to help get food down, it worked better than water for several of us. Keep going in the right direction. Prayers for NED!

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #9
    Good

    Sounds like you may have turned the corner. There are good days and not so good days. Take each as they come. Rick.

  • PapaPaul
    PapaPaul Member Posts: 33
    #10
    fishmanpa said:

    Through the grinder...

    Hi P Paul,

    Wow... you certainly were put through the grinder on your recovery. Glad to hear you're on the mend. Keep up the hydration and nutrition and continue to heal.

    I'm two weeks out and fortunately I'm making progress, albeit very slow. How long was it until your mouth started to feel better? My throat feels pretty good but the burns/sores in my mouth are still giving me fits. I've not had anything but water by mouth for at least three weeks or so. 

    Positive thoughts and prayers

    "T"

    Sores in mouth

    My mouth sores started to heal about 2 weeks ago. And only after I started rinsing with Aloe Vera Juice. I found it at a farmers market in Ft Worth. I rinse first thing in the morning and just before bed. I also still use the magic mouth wash for pain and biotene for moisture. This has worked wonders, however the sores are not completly healed they do feel much better and I am able to eat some foods. Tonight I had fish sticks. The breading was tough but it went down. I will be praying for you and the entire HNC group for continued healing and progress in beating the monster!

  • metro22
    metro22 Member Posts: 16
    #11
    you are on the mend

    PapaPaul - sorry you had to go through so much but you now seem on the mend and I wish you well. I am new here and a couple of weeks away from starting rads with out chemo. I had a PEG installed to hopefully keep my calorie count up by pumping in food while I sleep. You said you were a bit malnourished which is common yet you have a PEG. Have wondered how many get dehydrated or malnourished with a PEG. What do I need to watch out for so that it does not happen to me?

     

    Thanks so much and wish you well as each week gets better for you.

  • PapaPaul
    PapaPaul Member Posts: 33
    #12
    metro22 said:

    you are on the mend

    PapaPaul - sorry you had to go through so much but you now seem on the mend and I wish you well. I am new here and a couple of weeks away from starting rads with out chemo. I had a PEG installed to hopefully keep my calorie count up by pumping in food while I sleep. You said you were a bit malnourished which is common yet you have a PEG. Have wondered how many get dehydrated or malnourished with a PEG. What do I need to watch out for so that it does not happen to me?

     

    Thanks so much and wish you well as each week gets better for you.

    Malnourishment

    I didn't get my peg until my last week of rads. A decision I regret! I lost 60 lbs from my toncilectomy to end of rads. I was already malnourished by the time I had the peg put in. After it was put in, I had a real hard time adjusting to having my stomach full again. The nausia and cramps were bad. This also prevented me from getting the water I needed to stay hydrated. In retrospect, delaying getting the tube was not a good decision and is one I regret. My recommendation to anyone considering not getting the tube.....get it early and get used to eating through it.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #13
    PapaPaul said:

    Malnourishment

    I didn't get my peg until my last week of rads. A decision I regret! I lost 60 lbs from my toncilectomy to end of rads. I was already malnourished by the time I had the peg put in. After it was put in, I had a real hard time adjusting to having my stomach full again. The nausia and cramps were bad. This also prevented me from getting the water I needed to stay hydrated. In retrospect, delaying getting the tube was not a good decision and is one I regret. My recommendation to anyone considering not getting the tube.....get it early and get used to eating through it.

    Late in the game

    Hi P Paul,

    I too got my tube late in the game. In fact, I finished treatment the morning of April 24th and had the PEG put in that afternoon. I lost a total of 50lbs from my tonsillectomy last December until end of treatment. I was dehydrated and malnourished as well by the last day of treatment. It took me about a week to get used to it and earn how to properly feed and hydrate myself. The rate of flow was key. I also suffered from nausea and vomiting the first week until I got things under control.  

    I do agree with you about getting the tube. It's better to get it early. Even if you never need it, it's a good insurance policy. Personally, it was a victory of sorts to make it through treatment without it but I paid a bit for it. I believe it's the reason I'm struggling now with recovery. 

    "T"

     

  • GringoTico
    GringoTico Member Posts: 1
    #14
    PapaPaul said:

    Malnourishment

    I didn't get my peg until my last week of rads. A decision I regret! I lost 60 lbs from my toncilectomy to end of rads. I was already malnourished by the time I had the peg put in. After it was put in, I had a real hard time adjusting to having my stomach full again. The nausia and cramps were bad. This also prevented me from getting the water I needed to stay hydrated. In retrospect, delaying getting the tube was not a good decision and is one I regret. My recommendation to anyone considering not getting the tube.....get it early and get used to eating through it.

    PEG Tube Prior to Treatment

    My treatment team strongly recommended placement of my PEG tube prior to commencement of treatment.  I complied, and while I got tired of having it poking out of my stomach after I no longer needed it, I'm sure that it was good that I had it when I needed it, which I very much did after about the fifth week of radiation.  In spite of having the PEG tube, I lost close to 40 pounds, mainly because when my wife and I flew back from Baltimore to our home in Costa Rica I foolishly shipped the three cases of Osmolite 1.2 complete liquid diet that Johns Hopkins Cancer Center had provided me by a freight company that shipped freight in cargo containers, because I didn't want to pay the airline to ship the heavy cans of liquid (I was supposed to feed myself six cans/day for complete nutrition).  I guess that the stress of treatment and leaving the care at the cancer center affected my thinking and it didn't sink in that the food that was supposed to keep me alive through my PEG tube would take three weeks to arrive, since the cargo container was going to travel by cargo container ship.  My wife and I did our best concocting nutritiious smoothies, using powdered milk, soy powder, milk, peanut butter (didn't blend well), but I kept losing weight.  Not having the medicallly formulated Osmolite, I forced myself to feed myself whatever bland, soft food I could tolerate, with my fairly sever mucositis.  By the time the Osmolite was delivered to our house by the shipping company, I was feeding myself pretty well orally.  I ended up donating two and a half cases of the Osmolite to the national Children's Hospital Palliative Care Center in the capital, San Jose.  Meanwhile, I've tried to keep my weight down to about 185 pounds, what I weighed when I graduated from high school.  Of course, I had lost a lot of muscle along with fat, so I've been going to the gym to try to replace muscle mass while keeping my "new normal" weight.  In retrospect, my stupid error shipping my sustenance from Baltimore to Costa Rica by "slow boat," was pretty humerous, since I survived and successfully met weight reduction goals.  Not by a means that I'd recommend to anybody.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #15
    GringoTico said:

    PEG Tube Prior to Treatment

    My treatment team strongly recommended placement of my PEG tube prior to commencement of treatment.  I complied, and while I got tired of having it poking out of my stomach after I no longer needed it, I'm sure that it was good that I had it when I needed it, which I very much did after about the fifth week of radiation.  In spite of having the PEG tube, I lost close to 40 pounds, mainly because when my wife and I flew back from Baltimore to our home in Costa Rica I foolishly shipped the three cases of Osmolite 1.2 complete liquid diet that Johns Hopkins Cancer Center had provided me by a freight company that shipped freight in cargo containers, because I didn't want to pay the airline to ship the heavy cans of liquid (I was supposed to feed myself six cans/day for complete nutrition).  I guess that the stress of treatment and leaving the care at the cancer center affected my thinking and it didn't sink in that the food that was supposed to keep me alive through my PEG tube would take three weeks to arrive, since the cargo container was going to travel by cargo container ship.  My wife and I did our best concocting nutritiious smoothies, using powdered milk, soy powder, milk, peanut butter (didn't blend well), but I kept losing weight.  Not having the medicallly formulated Osmolite, I forced myself to feed myself whatever bland, soft food I could tolerate, with my fairly sever mucositis.  By the time the Osmolite was delivered to our house by the shipping company, I was feeding myself pretty well orally.  I ended up donating two and a half cases of the Osmolite to the national Children's Hospital Palliative Care Center in the capital, San Jose.  Meanwhile, I've tried to keep my weight down to about 185 pounds, what I weighed when I graduated from high school.  Of course, I had lost a lot of muscle along with fat, so I've been going to the gym to try to replace muscle mass while keeping my "new normal" weight.  In retrospect, my stupid error shipping my sustenance from Baltimore to Costa Rica by "slow boat," was pretty humerous, since I survived and successfully met weight reduction goals.  Not by a means that I'd recommend to anybody.

    Hi P ...

    Man your story sounds so familiar!  Except I'm jealous over the fact you can tatste sweet!  That's not fair, I'm 17 months out and the only sweet I can barely taste is a mounds bar (go figure).  :)  Of course I'm teasing and very happy you are about out of the "cooking" pot.

    I had the peg before treatments started and I still lost 70lbs...but I was a big guy going on at 320 lbs.  I'm now at 236 and holding quite well.

    For the life of me I get why many doctors don't want to put the tube in at the front of treatments, but haven't they learned it just like how they get paid, it's just insurance IN CASE the patient needs it. If food is so important to the healing process then access to food is critical...and IF the patient gets where they can not get food in their body X number weeks into a brutal regime of treatments, that woud seem NOT the time to insert a tube into the picture.

    My little soapbox for tonight. :)

    Keep us posted.

    Tim

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