Visiting Forum after long absence

Sergio1
Sergio1 Member Posts: 16
edited November 2013 in Head and Neck Cancer #1

My treatment (2 Cisplatin and 33 radiation) for stage 4 throat cancer ended in dec 2010.  I am 3 years out and doing marginally well.  Cancelled my 3 year CAT scan but still visit the Dr. to deal with the damage the treatment did to my kidneys and parathyroid. 

Just wondering how many out there lost sweet taste.   Most other foods, as long as they do not contain sugar taste ok.  Milk, OJ, cereal, spaguetti sauce, pastries and rum taste fowl.  The one benefit is, weight control is no problem. Having lost liquid (I only make phlem) saliva forces me to eat slowly.  I was a fast eater and generally weighed 20 lbs. over ideal.  I stay right at it now w/o effort.

The swelling in the neck due to damage to the lymphatic system has softened but not reduced much.  Chemo nerve damage to hands, feet and hearing is most afflicting.  Incessant loud ringing in silence, 80% loss of high frequency tones and constant pain in my hands remind me of the price I paid to continue living.  Hardening of the tissues around the neck, where the spinal nerves exit, causes severe and painful spasms, that occur several times a day.

When I was first diagnosed I was very sad and scared to die.  After inhabiting a broken body now for quite some time, moving on to the after life does not seem that bad.  Hope those of you out there victims of this virus (HPV) are coping well with your treatment induced ailments.

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I'm sorry you are living

    with dibilitating after effects.  I have nerve damage to my hands and feet, but without pain....just numbness (it's a pain in the rear when I'm trying to do something that takes the ability to feel), but it's liveable.  I've got the ringing in my ears, too....never ending, but somehow I only notice it when I pay attention to it, or it changes tune....

    Have they mae mention of some type of pain management to you?  Just thinking, nearly everything is liveable but pain....constant pain would make me crazy in short order.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    sorry

    Sergio1,

    I am sorry for the damage your body received from treatments, that is something many of us worry about.

    While I can taste everything a little bit, sweets have turned out to be hit or miss.  I lost about 45 pounds from treatments and have gained back around 10 pounds.

    While I do have the edema around the neck, I was spared the others, probably because I took Erbitux and not one of the Platinum based chemo drugs.

    When I found out I had cancer I too was sad and afraid to die (especially when I heard stage IVa), but knowing the risk/results spread I am happy to say I am satisfied with my post cancer life.  I am sorry you are not feeling better and wish there was something to be done to generate favorable outcome.

    I have seen the path of no treatment and it is not pleasant.

    Don’t give up on yourself.

    Matt

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #4
    Know thy enemy

    When we first get diagnosed, we think that cancer is the enemy.  For most of us, the true enemy in the short term is the chemo + rads treatments.  They do a great job of ridding our bodies of the cancer, but we pay a high price for that result.  At almost 5 years post-treatments, and having more than my fair share of side effects (and more still to deal with) I am willing to accept where I am (alive with side effects) over where I could be (not alive).  If the price of life is the loss of some sweet taste sensations, neuropathy, ringing in the ears, limited range of motion, and eating slowly (all of which I have experienced or still have) then I will take that hand any day of the week.  Most of the side effects you mention will go away over time.

    To give up and think that moving to the after life is better lets cancer win--and we can never let that happen.  Hang in there, find help, and keep fighting--I have a good hunch that you will get through this and enjoy the new-normal life of a cancer SURVIVOR for many years.  If you need direct support, please send me a private email.

    Mike

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Bad Luck...

    Sorry you got the raw did you have, but you are alive..., and unfortunately sounds like one of the few that got the raw end of the stick.

    Sweet was the longest to return for me, nearly two years, but it eventually did.

    I consider myself fortunate with very few long term side effects.

    Really sorry that you have inherited a lot of the damage that you have...

    Best,

    John

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