Possible neuropathy with a PET scan scheduled

Puggle
Puggle Member Posts: 88 Member
in Head and Neck Cancer #1
My husband's last cisplatin treatment was August 22nd. He never experienced neuropathy but he had kidney issues with increased creatinine levels which still aren't totally under control. His doctor has him scheduled for a PET scan tomorrow morning but he is now saying he feels "weird" like pins and needles. Could the neuropathy hit him 2 months out? We're also wondering if the PET scan could cause additional problems. We have a call in to his doctor but since it's past office hours we're not sure if we're going to get a call back tonight. Does anyone know how far out he can expect side effects from the chemo?

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Pins and Needles....
    Just out of curiosity, he doesn't get that weird feeling in his arms and legs by chance when he bends his head forward touching his chin to his chest?

    I know that sounds a little weird, but if he had radiation, this is called L'Hermette's and most all of us have had it. Usually kicking in a few months post rads and lasting 9 - 12 months.

    If I have mentioned this before to you sorry, or if he didn't have rads.

    As for the chemo, I also had cisplatin along with three other chemo drugs. I didn't have any reactions as for side effects, but would presume any damage that might have been caused would show up rather quickly. Reason being is that the drugs are flushed relatively fast through your system.

    Thoughts & Prayers,
    John
  • Puggle
    Puggle Member Posts: 88 Member
    #3
    Skiffin16 said:

    Pins and Needles....
    Just out of curiosity, he doesn't get that weird feeling in his arms and legs by chance when he bends his head forward touching his chin to his chest?

    I know that sounds a little weird, but if he had radiation, this is called L'Hermette's and most all of us have had it. Usually kicking in a few months post rads and lasting 9 - 12 months.

    If I have mentioned this before to you sorry, or if he didn't have rads.

    As for the chemo, I also had cisplatin along with three other chemo drugs. I didn't have any reactions as for side effects, but would presume any damage that might have been caused would show up rather quickly. Reason being is that the drugs are flushed relatively fast through your system.

    Thoughts & Prayers,
    John

    Doesn't seem like L'Hemette's
    Thanks John! Doesn't seem like L'Hemette's. I asked him to check right after I saw your post and he said that bending his head doesn't seem to set it off. He did have 32 rads so who knows, that may be in store for another day.

    He said the tingly feeling isn't too bad and the MO that was on call said that he should still go ahead with the PET and just bring it up during his next appointment with his regular MO in a week. Strange, but at this point we don't know what is a side effect and what is just something ordinary. It's enough to drive you nuts!

    I'm glad that they didn't want to delay the PET because he's just anxious to see if this was all worth it and the cancer is gone but after reading so many other posts I'm hoping that this isn't too early. Our RO said he always schedules them 2 months out and at the last appointment he said that he wasn't worried about false positives.

    Thanks again... jc
  • shoeloy
    shoeloy Member Posts: 70
    #4
    Neuropothy
    I have contracted Nueropathy since finishing treatment. It got worse a couple of months out of treatment and has not really gotten better. I am taking medicine for it but the MO says that since it is not helping it may be a lifetime condition.


    Loyd
  • CajunEagle
    CajunEagle Member Posts: 408
    #5
    shoeloy said:

    Neuropothy
    I have contracted Nueropathy since finishing treatment. It got worse a couple of months out of treatment and has not really gotten better. I am taking medicine for it but the MO says that since it is not helping it may be a lifetime condition.


    Loyd

    Yep, I got it also.
    I've been through with treatment (6 rounds Cisplatnin....2 of Taxtera...2 of 5FU + 36 radiations) for 2 years and 4 months. Hands and feet feel as though they are "asleep"....as we used to say, and have been this way since the last round of Cisplatnin. Woke up from one of those 1/2 comas that we go through towards the end, and my feet and hands were tingling like crazy. My Chemo Oncologist said it was his fault, and I could blame it on him.....(He's such a sweetheart). I now have very little feeling in my hands from mid-palm to my fingertips, and from mid-arch to ends of my toes, and look like I'll have this situation for the duration. I do take medication twice a day in order to obtain some normal sensation. The positive is that SHE doesn't "allow" me to wash or dry dishes due to massive amounts of droppage. Negative being that it very difficult to tie a hook on a fishing line, and heaven forbid....don't get a small rock or shell in my shoes ( couldn't feel it once, and foot almost got infected ). Folding sheets and towels is a problem, but they don't break.....Darn It ! It has been noted over and again that no problems exist with the TV remote. Such is the life of a H&N survivor.

    Larry L.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Hi Puggle

    I was 6 year out from treatment before I started having problems with nerves in my face causing me pain and not being able to swallow.

    I hope the PET scan goes well keep us posted.

    Wishing you the both the best
    Hondo
  • Puggle
    Puggle Member Posts: 88 Member
    #7
    shoeloy said:

    Neuropothy
    I have contracted Nueropathy since finishing treatment. It got worse a couple of months out of treatment and has not really gotten better. I am taking medicine for it but the MO says that since it is not helping it may be a lifetime condition.


    Loyd

    What type of chemo did you have?
    Hi Loyd,

    So sorry that the meds you're taking don't seem to be helping the neuropathy. What type of chemo did you have?
  • shoeloy
    shoeloy Member Posts: 70
    #8
    Puggle said:

    What type of chemo did you have?
    Hi Loyd,

    So sorry that the meds you're taking don't seem to be helping the neuropathy. What type of chemo did you have?

    Chemo
    Puggle,

    I had 3 inductive rounds Cisplatin, Taxtera and 5FU, then 35 radiations with weekly cisplatin. Actually only had 6 weeks of the cisplatin since blood counts were too low onthe last week.

    I am learning to deal with my hands and feet always feeling like they are asleep. Sometimes it creeps up the leg to about the knee making it very hard to walk.

    Thanks for the sentiment, but I am doing so much better than I deserve. I can definitely live with the small ammount of side effects that I have. I have so much less than others that I feel trulu blessed.

    Loyd
  • bones821
    bones821 Member Posts: 7
    #9
    shoeloy said:

    Chemo
    Puggle,

    I had 3 inductive rounds Cisplatin, Taxtera and 5FU, then 35 radiations with weekly cisplatin. Actually only had 6 weeks of the cisplatin since blood counts were too low onthe last week.

    I am learning to deal with my hands and feet always feeling like they are asleep. Sometimes it creeps up the leg to about the knee making it very hard to walk.

    Thanks for the sentiment, but I am doing so much better than I deserve. I can definitely live with the small ammount of side effects that I have. I have so much less than others that I feel trulu blessed.

    Loyd

    Possible neuropathy
    I also had three rounds of cisplatin and 35 radiation treatments. My neuropathy in the hands and the feet did not show up for eight weeks after treatments ended. It is a severe case of neuropathy and I walk with a cane and use voice recognition in order to use my computer. It is available on windows seven, by the way. My oncologist has told me that the neuropathy will go away in time. I asked him why he says that. His answer was that he has been doing this for a long time and he knows how much dosage I got. I jokingly asked him for a date and time for when it will be gone. He laughed, and said it will take time but it will go away. Im six months from onset and I think it is very slowly getting better. At this rate I maybe 100 before I am back to normal but I am alive. It was very distressing for me to end the cancer treatments only to be faced with a side effect that I was not aware of. The way I am dealing with it, and perhaps this will help you to, is to understand that life as I knew it changed the day I was told I had stage iv cancer. My wife and I survived the treatments and got the all clear on my pet scan. I feel great and am very grateful but the neuropathy is no joke! I feel as though I went to war against cancer and had to use weapons of mass destruction in order to defeat this evil disease. I came home from this war with injuries from the collateral damage of the weapons, cisplatin and radiation. The war is not over but we have defeated the enemy and the injuries sustained are going to be managed.... Now that I am a cancer survivor and I walk with a cane I look around and see people who have it a lot worse than I do. I pray for them as I pray for everyone on this board... We may all have our own mantras and I will pass along mine.....Never surrender, never, never, ever surrender.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    bones821 said:

    Possible neuropathy
    I also had three rounds of cisplatin and 35 radiation treatments. My neuropathy in the hands and the feet did not show up for eight weeks after treatments ended. It is a severe case of neuropathy and I walk with a cane and use voice recognition in order to use my computer. It is available on windows seven, by the way. My oncologist has told me that the neuropathy will go away in time. I asked him why he says that. His answer was that he has been doing this for a long time and he knows how much dosage I got. I jokingly asked him for a date and time for when it will be gone. He laughed, and said it will take time but it will go away. Im six months from onset and I think it is very slowly getting better. At this rate I maybe 100 before I am back to normal but I am alive. It was very distressing for me to end the cancer treatments only to be faced with a side effect that I was not aware of. The way I am dealing with it, and perhaps this will help you to, is to understand that life as I knew it changed the day I was told I had stage iv cancer. My wife and I survived the treatments and got the all clear on my pet scan. I feel great and am very grateful but the neuropathy is no joke! I feel as though I went to war against cancer and had to use weapons of mass destruction in order to defeat this evil disease. I came home from this war with injuries from the collateral damage of the weapons, cisplatin and radiation. The war is not over but we have defeated the enemy and the injuries sustained are going to be managed.... Now that I am a cancer survivor and I walk with a cane I look around and see people who have it a lot worse than I do. I pray for them as I pray for everyone on this board... We may all have our own mantras and I will pass along mine.....Never surrender, never, never, ever surrender.

    Kicking and Screaming....
    That's how I'm going......

    JG
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    bones821 said:

    Possible neuropathy
    I also had three rounds of cisplatin and 35 radiation treatments. My neuropathy in the hands and the feet did not show up for eight weeks after treatments ended. It is a severe case of neuropathy and I walk with a cane and use voice recognition in order to use my computer. It is available on windows seven, by the way. My oncologist has told me that the neuropathy will go away in time. I asked him why he says that. His answer was that he has been doing this for a long time and he knows how much dosage I got. I jokingly asked him for a date and time for when it will be gone. He laughed, and said it will take time but it will go away. Im six months from onset and I think it is very slowly getting better. At this rate I maybe 100 before I am back to normal but I am alive. It was very distressing for me to end the cancer treatments only to be faced with a side effect that I was not aware of. The way I am dealing with it, and perhaps this will help you to, is to understand that life as I knew it changed the day I was told I had stage iv cancer. My wife and I survived the treatments and got the all clear on my pet scan. I feel great and am very grateful but the neuropathy is no joke! I feel as though I went to war against cancer and had to use weapons of mass destruction in order to defeat this evil disease. I came home from this war with injuries from the collateral damage of the weapons, cisplatin and radiation. The war is not over but we have defeated the enemy and the injuries sustained are going to be managed.... Now that I am a cancer survivor and I walk with a cane I look around and see people who have it a lot worse than I do. I pray for them as I pray for everyone on this board... We may all have our own mantras and I will pass along mine.....Never surrender, never, never, ever surrender.

    Hi bones
    Congratulations on the all clear and yes the side affects suck but the live after treatment is just as good my friend.

    PS: welcome to the family here on CSN

    God bless and keep you while in His workshop
    Hondo

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