Post treatment fatigue/Pet Scan

Hal61
Hal61 Member Posts: 655
edited March 2014 in Head and Neck Cancer #1
Hi Everyone, thanks for all your help throughout my last six months of treatment for base of tongue SCC with two lymph node involvement. I had 35 rads and 3 cisplatin chemo treatments. I'll be getting the results of my first post treatment PET/CAT scan from last Friday and would appreicate your thoughts on Wednesday the 12th as I am scared.

One other thing, if anyone who has been to my stage can give me an opinion on. I've been sick, like everyone else through treatment. Though I'm no longer sick to that degree--by a long shot--I am experiencing pronounced fatigue that I read is also normal. My question is, was your fatigue accompanied with joint soreness and pain. Sometimes when I try to sleep my joints ache to the point I can't get to sleep. Since I'll be seeing my trio of doctors this week I will ask them, but wanted to ask here first.

Thank you all for everything, and best of luck to us all.

Hal

Comments

  • Pumakitty
    Pumakitty Member Posts: 652
    #2
    My thoughts
    Hal,

    My thoughs and prayers are with you! Please let us know how it goes.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    Fatigue and joint pain
    This was actually one of the things Mike, (Chef Daddy) and I were also speaking about las week when we talked.

    I know for me, I experienced this. It was really bad and I happened to be speaking to my best friend's sister. I was telling her, that I knew it sounds sort of stupid, but I was really having trouble sleeping and laying in bed, I had lost so much weight that my bones were hurting on the springs of my bed. I was having bad hip joint pain especially. Other joint pain as well, but my hips and tailbone, and legs seemed the worst.

    This was las october. My b'day is around thanksgiving. My best friend called me and told me that her sister had sent me a gift. When I got there I opened the package to find a very thick and heavy memory foam matress, with a nice thick feathery pad that holds it on top the bed, and a seriously nice thread count package of new deep pocket sheets. (I am here to tell you cheap sheets suck) (I bought the cheapest I could find, wow, never thought there would be a diff,, but there is)

    Since I could not even lift the pad, my guy best friend helped me put together my 'new bed'. It was amazing. My joints and my body feel so much better. I still have some joint pain in various places, but it made a significant difference in my sleep quality when I do sleep, and in my pain levels. I felt like I had fibro myalgia before. now, so much better. I still get some pain in my hip bones and joints when I walk a lot, or decide to wear a pair of 4 inch heels I can feel it in my hip joints.

    I have no clue if this would help, but it is something to think about. I know getting quality sleep can be an issue with dry mouth and many other reasons, so it was helpful to feel more comfortable.

    Wishing you the best of luck. When you get scared try to think about all of us that are here for your support. Iwish I could do more for you. Breathe, go slowly, and take one day at a time. I am trying not to expend energy on worrying. It's easier said than done.
  • brotherslittlehelper
    brotherslittlehelper Member Posts: 19
    #4
    Joint pain
    Hal,
    Hello, I am glad to hear that you are doing over-all well. My brother had experienced joint pain after recieving a drug for after chemo. The drug/shot was called Nulasta. It is supposted to be a kind of "booster" shot for your immune system. I think it is only given when you are going to be off chemo for a long period. Doc said joint pain was common after having this drug. Don't know if this is helps you at all, but thought I'd give it a try. Wishing you the best, Jess
  • train-nut
    train-nut Member Posts: 101
    #5
    Becoming A " Vintage" Guy
    Hello Hal'

    Recent problems with my teeth and my back have prompted statements from each of the docs that I'm getting older. Can't blame the cancer treatment for everything. The joint pain you are having might well have happened to the "old" you. The energy level slowly comes back but I doubt that I will ever zoom around like I used to (I'm taking time to look around me more). Good luck on your scan results and the best of health to you, Rich
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    brotherslittlehelper said:

    Joint pain
    Hal,
    Hello, I am glad to hear that you are doing over-all well. My brother had experienced joint pain after recieving a drug for after chemo. The drug/shot was called Nulasta. It is supposted to be a kind of "booster" shot for your immune system. I think it is only given when you are going to be off chemo for a long period. Doc said joint pain was common after having this drug. Don't know if this is helps you at all, but thought I'd give it a try. Wishing you the best, Jess

    Neulasta
    Actually I believe the Neulasta is for boosting your WBC helping fight infection and such (similar to what you said I guess). It helps regenrate the WBC in your bone marrow, that's why the bone pain.

    I was given Neulast after each of my three cycles (nine weeks of chemo). Each chemo cycle started on a Monday, the following Monday, I would get the Neulasta. The first Monday I did get flu like symptoms, aches and pains in the bones, but that was mainly the first time. The next two that I recieved weren't nearly as bad on me.

    Neulasta is somewhere in the range of $4000 - $6000 per injection...

    JG
  • Scambuster
    Scambuster Member Posts: 973
    #7
    Fatigue
    Hi Hal,

    Fatigue is common, often because 1. you are getting older, 2. You have been battered by Rads and Chemo and 3. Previous injuries/lack of condition and autoimmune Dysfunction ++.

    You sound like you have what is generally called Fibromyalgia. One of the causes not commonly stated is part of a complex of problems from auto-immune dysfunction. FM is often associated with Chronic Fatigue.

    The fact you got cancer in the first place means something wasn't right. The rads and chemo often make matters worse (talking about yr immune system).

    The treatment for FM can be varied depending on which path you believe in or wish to travel.

    Your Doctors will give you a pill (Anti-inflammatories). Short term solution and creates more problems.

    Personally I would suggest mild stretching exercises and preferably start Yoga (big call ?).Pilates are also excellent alternative as your 'core' strength is vital to stop the body trying to compensate for an imbalance in your bodies strength.

    The other old drum I will beat once again is your diet and nutrition. I suffered many years of FM and also had my dose of the SCC last year. As you know I have been pumping various supplements and Vitamins into me and now pretty much stay on a vegetarian diet, try to keep my system alkaline and have reduced coffee and beers to near '0'. I can say I actually feel better now than I have in years, even pre-Cancer. You may not be getting the restful sleep you need either. Try herbal teas, valerian, cammomile or other things that will help you get a good nights sleep.

    You may also look at getting Vitamin B and C injections for a week or so. This won't hurt you, and if you notice improvement, it's another indicator or what to work on. Your Doctor may even ba able to give thse or at least a Vit B Complex.

    Remember Hal, you body was damaged by the treatment. I think it's important to understand what happened, repair the damage as best you can, and prevent it happening again.

    I am reading many testimonials of people changing their diets and getting a new lease on life. Things like 'Green Smoothies' and raw foods in general, in volume, can turn your health around 180. I have mentioned the book called 'The China Study' and also 'Healing Cancer from the inside', which I recommend to all here (You can download both 1.as a book PDF & 2 movie - avi).

    The China Study covers indisputable evidence that consumption of Animal Protein will increase the likelihood of cancer initaion and progress and the reverse also is shown, by removing Animal protien from your diet will reduce and or reverse the progress of cancer.

    We are all now in the higher risk of reoccurence. I figure I will eliminate such risks as best I can. My choice.

    Hope this input leads you somewhere good.
    Scam
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #8
    Scambuster said:

    Fatigue
    Hi Hal,

    Fatigue is common, often because 1. you are getting older, 2. You have been battered by Rads and Chemo and 3. Previous injuries/lack of condition and autoimmune Dysfunction ++.

    You sound like you have what is generally called Fibromyalgia. One of the causes not commonly stated is part of a complex of problems from auto-immune dysfunction. FM is often associated with Chronic Fatigue.

    The fact you got cancer in the first place means something wasn't right. The rads and chemo often make matters worse (talking about yr immune system).

    The treatment for FM can be varied depending on which path you believe in or wish to travel.

    Your Doctors will give you a pill (Anti-inflammatories). Short term solution and creates more problems.

    Personally I would suggest mild stretching exercises and preferably start Yoga (big call ?).Pilates are also excellent alternative as your 'core' strength is vital to stop the body trying to compensate for an imbalance in your bodies strength.

    The other old drum I will beat once again is your diet and nutrition. I suffered many years of FM and also had my dose of the SCC last year. As you know I have been pumping various supplements and Vitamins into me and now pretty much stay on a vegetarian diet, try to keep my system alkaline and have reduced coffee and beers to near '0'. I can say I actually feel better now than I have in years, even pre-Cancer. You may not be getting the restful sleep you need either. Try herbal teas, valerian, cammomile or other things that will help you get a good nights sleep.

    You may also look at getting Vitamin B and C injections for a week or so. This won't hurt you, and if you notice improvement, it's another indicator or what to work on. Your Doctor may even ba able to give thse or at least a Vit B Complex.

    Remember Hal, you body was damaged by the treatment. I think it's important to understand what happened, repair the damage as best you can, and prevent it happening again.

    I am reading many testimonials of people changing their diets and getting a new lease on life. Things like 'Green Smoothies' and raw foods in general, in volume, can turn your health around 180. I have mentioned the book called 'The China Study' and also 'Healing Cancer from the inside', which I recommend to all here (You can download both 1.as a book PDF & 2 movie - avi).

    The China Study covers indisputable evidence that consumption of Animal Protein will increase the likelihood of cancer initaion and progress and the reverse also is shown, by removing Animal protien from your diet will reduce and or reverse the progress of cancer.

    We are all now in the higher risk of reoccurence. I figure I will eliminate such risks as best I can. My choice.

    Hope this input leads you somewhere good.
    Scam

    Hi Hal, I am just a month or
    Hi Hal, I am just a month or so ahead of you. SCC BOT with mest to 1 lymph node. Rads and chemo as well. Like you, I felt anxiety in the weeks leading up to my PET. My first PET was at 3 months, not ideal as I was still cooking from the rads and results just clouded the results for the Docs. Second PET about a month ago. Everything fine. Try not to get yourself too worked up about something you cannot control. (easier said than done) As for the fatigue, I had some and yes my joints ached a bunch too. I tried to stay active and get back to doing the things that I used to do with my 11 year old. Play catch, skating playing hockey with her and her team and hopefully when it warms up here in Michigan some golf. I do feel better. I will be thinking of you tomorrow. Good luck. Keep us all posted of your news.

    Mike
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #9
    Landranger25 said:

    Hi Hal, I am just a month or
    Hi Hal, I am just a month or so ahead of you. SCC BOT with mest to 1 lymph node. Rads and chemo as well. Like you, I felt anxiety in the weeks leading up to my PET. My first PET was at 3 months, not ideal as I was still cooking from the rads and results just clouded the results for the Docs. Second PET about a month ago. Everything fine. Try not to get yourself too worked up about something you cannot control. (easier said than done) As for the fatigue, I had some and yes my joints ached a bunch too. I tried to stay active and get back to doing the things that I used to do with my 11 year old. Play catch, skating playing hockey with her and her team and hopefully when it warms up here in Michigan some golf. I do feel better. I will be thinking of you tomorrow. Good luck. Keep us all posted of your news.

    Mike

    Hal
    First Pet Scan is a breeze- too early for anything to show is likely, and anything that does is to be held highly-suspect, so don't sweat it. Something "may have shown" with my first, but my second (8 months later) was clean. Place is supposedly showed was below my tongue, but my ENT said that's an area of a lotta false-positives, so it didn't concern him. My Oncologist was surprised by my ENT's lack of concern, as was the rad Dr.- and the second Pet proved him right. Did make me wonder about the Onco and Rad, and the angle each of them is coming from. Still- the first Pet is a breeze.

    Believe

    kcass
  • cwcad
    cwcad Member Posts: 117
    #10
    Landranger25 said:

    Hi Hal, I am just a month or
    Hi Hal, I am just a month or so ahead of you. SCC BOT with mest to 1 lymph node. Rads and chemo as well. Like you, I felt anxiety in the weeks leading up to my PET. My first PET was at 3 months, not ideal as I was still cooking from the rads and results just clouded the results for the Docs. Second PET about a month ago. Everything fine. Try not to get yourself too worked up about something you cannot control. (easier said than done) As for the fatigue, I had some and yes my joints ached a bunch too. I tried to stay active and get back to doing the things that I used to do with my 11 year old. Play catch, skating playing hockey with her and her team and hopefully when it warms up here in Michigan some golf. I do feel better. I will be thinking of you tomorrow. Good luck. Keep us all posted of your news.

    Mike

    chronic fatigue
    I am three years out of Stage IV base of tongue cancer. Thankfully I am cancer free. Fatigue has been a bane for me. I lost considerable weight and got completely depressed so it added to my fatigue.

    Hydration was a key for me. All through treatment I was given hydration. I continued with the hydration for six weeks after completion of treatments. I was slowly weaned off the port that I had in my chest. What a blessing my double port was for me. But that is another story.

    Water is natures nectar and it will help anyone who is in recovery. Drinking 64 oz of water per day is difficult but doable.

    I am still tired. I don't know when it will come back to me. I feel good physically but still have fatigue from the easiest of efforts. I mow my lawn with a rider and get tired. I weed my small flower bed and get tired. I play with my nine year old son and get tired. I am sorry that I have no answers. Fatigue is a problem for cancer survivors. Some are effected worse than others. It depends on age and your general health prior to cancer. treatments. I was fat and out of shape. When I lost all of my weight(upwards of a 140 pounds) I lost a lot of muscle and it does not seem to have any memory because it is not coming back.

    I don't think that I am suffering any longer. I get tired very easily but I have nothing to do all day but live so I think I am going to enjoy the rest of my stay. Tired or not. My hope is that your luck is as good as mine but comes along sooner.

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