recurrent squamous cell

cbecker
cbecker Member Posts: 88
edited March 2014 in Head and Neck Cancer #1
I'm asking if anyone has had the same recurrance that my husband has had. He started with a tumor in his throat in the piriform sinus which is in the back of your voice box and in the opening of your esophugus (mis-spelled). He had 40 radiation treatments (agressive) to his throat which the last treatment was July 10, 2002. He took him 8 months to get back to some sort of normal life. He was on the feeding tube until December of 2002, had losts of problems. Then in January of 2003 he had a pain in his left elbow, we thought it might be tennis elbow but it was cancer. He had surgery to remove the tumor but at this time they tested his lungs and found 12 tumors. He is now starting this past week chemo of cisplatin, 5FU and taxol. This is a clinical trail for recurrent squamous cell. He has this treatment every three weeks. His cancer cannot be cured but it is to hopefully give him longivity of life and better quality of life. Well, the first week of chemo we thought we had it licked but on the third day he has what is called radiation recall. His throat is all swallen again. He can hardly get water thru it. He has mouth and throat sores and is inflamed horribly. He told me it is like going thru radiation again after the fourth week when it is so severe. Has anyone had this happen? Have you been on this chemo treatment? And did it help? If anyone can help, please answer. We feel like we are starting at square one again. I hate to see him go thru this severe pain again. He already has carried one cross. I was so surprise that this radiation recall happened. He feels like he is going thru the radiation chamber again. Thanks, Candy

Comments

  • deerbob
    deerbob Member Posts: 2
    #2
    Candy,
    What you have just described is my worst nightmare. I have had no recurrence but I did have cisplatin on the original treatment. I have had others tell me they had horrible mouth sores as a side effect of cisplatin without radiation. I had both concurrently so I didn't know which caused the sores. I do know they are hell and there is not much you can do. The mouthwash they give you can help a little but not for very long. The best thing I tried was pain killer called "levo". It seemed to target pain in the mouth and throat. My prayers are with both of you.
    Bob
  • cbecker
    cbecker Member Posts: 88
    #3
    deerbob said:

    Candy,
    What you have just described is my worst nightmare. I have had no recurrence but I did have cisplatin on the original treatment. I have had others tell me they had horrible mouth sores as a side effect of cisplatin without radiation. I had both concurrently so I didn't know which caused the sores. I do know they are hell and there is not much you can do. The mouthwash they give you can help a little but not for very long. The best thing I tried was pain killer called "levo". It seemed to target pain in the mouth and throat. My prayers are with both of you.
    Bob

    Bob, thank you for the input. Jim had this total hell at MD Anderson last summer when they were originally treating the first cancer of the throat 40 radiation treatments which for two weeks he went in twice a day. They got the tumor and he went thru hell as all of you do. He used a product called Ulcer Ease have to order it from drugstore not a prescription. Also club soda helps to swish and swallow. I will ask the Dr. about Levo pain killer. I do not think he will be able to have 5FU because of it bringing back the sym. of radiation recall which is being burnt all over again without going thru radiation. I hope will do ok. Prayers to you, Candy
  • parkrowj
    parkrowj Member Posts: 3
    #4
    cbecker said:

    Bob, thank you for the input. Jim had this total hell at MD Anderson last summer when they were originally treating the first cancer of the throat 40 radiation treatments which for two weeks he went in twice a day. They got the tumor and he went thru hell as all of you do. He used a product called Ulcer Ease have to order it from drugstore not a prescription. Also club soda helps to swish and swallow. I will ask the Dr. about Levo pain killer. I do not think he will be able to have 5FU because of it bringing back the sym. of radiation recall which is being burnt all over again without going thru radiation. I hope will do ok. Prayers to you, Candy

    My battle with squamous cell began in 1999 in the neck and at the base of my tongue. I choose a different path in that I refused radiation and took treatments that can be reviewed at www.donsbach.com as well as my testamony. I did have two operations at Johns Hopkins, nothing radical, and today I am well. If I can help you with info please contact me directly at parkrowj@aol.com.. Vernon
  • sgendrolini
    sgendrolini Member Posts: 11
    #5
    hi Candy,
    sorry to hear that things are so tough. My husband had 5FU and cisplatin chemotherapy. It worked real well in reducing external swelling (he has mucoepidermoid carcinoma of salivary gland - I think this is same/similar to squamous cell?). We are waiting for results of MRI scan to see if what the effect was on the inside. We were told that chemo isnt very effective for this type of cancer, but it certainly seems to be effective from what we can see. Hope that this gives you some hope. The next steps for my husband are surgery (removal of tumour, jaw, ear, nerve?) and radiotherapy. I have never heard of radiation recall. What is this?

    how is your husband doing now? Was he able to complete his chemo ?

    my thoughts are with you,

    Sara
  • blitzbob`
    blitzbob` Member Posts: 17
    #6
    sgendrolini said:

    hi Candy,
    sorry to hear that things are so tough. My husband had 5FU and cisplatin chemotherapy. It worked real well in reducing external swelling (he has mucoepidermoid carcinoma of salivary gland - I think this is same/similar to squamous cell?). We are waiting for results of MRI scan to see if what the effect was on the inside. We were told that chemo isnt very effective for this type of cancer, but it certainly seems to be effective from what we can see. Hope that this gives you some hope. The next steps for my husband are surgery (removal of tumour, jaw, ear, nerve?) and radiotherapy. I have never heard of radiation recall. What is this?

    how is your husband doing now? Was he able to complete his chemo ?

    my thoughts are with you,

    Sara

    Why oh why do they give people who may have terminal cancer this awful treatment depending age of person everyone should die with dignity thers not much dignity in pumping peolpe with yerminaL CANCER FULL OF BURN AND POISON For goodness sake people are humans and need tender loving care with the best possible quality of life okay put them through it once bit not twice
  • Lorilynn
    Lorilynn Member Posts: 1
    #7
    parkrowj said:

    My battle with squamous cell began in 1999 in the neck and at the base of my tongue. I choose a different path in that I refused radiation and took treatments that can be reviewed at www.donsbach.com as well as my testamony. I did have two operations at Johns Hopkins, nothing radical, and today I am well. If I can help you with info please contact me directly at parkrowj@aol.com.. Vernon

    Vernon, what did you take from Dr. Donsbach? My husband has been diagnosed with Squamous Cell in the liver.
  • rbw60
    rbw60 Member Posts: 13
    #8
    I had tumor on left tonsil, then it spread to all lymph nodes in neck on both sides. In operable due to size of tumors and location. I had 4 types of Chemo, 4 days after first treatment I thought I was dying, lived on toilet. Lost 60 pounds, one of the chemo drugs was administered in a pump You wore at home for 5 days. Had 3 of these treatments, then almost 40 rad treatments after the chemo. First CT looked great, second CT shows a "1/2 tumor on right lung near top. I do not know any treatment options as yet, but that the Chemo and Rads were not effective at killing all the cancer cells, so it is back to drawing board. I am 62 now and in love with my wife of 33 years, 2 sons, one grandchild, the other son will grad college 2011 and get married. Hope I live long enough to see it.

    God Bless to all,

    Robert
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Candy ~ Similar Initial Treatment Plan
    Hi Candy, sorry to hear of you and your husbands misfortune....

    I have not had any recurrance STG III SCC Tonsil and Lymphnode. I just wanted to say that I have had similar treatment though. I was no nine weeks (three week cycles) of Cisplaten, Taxotere and 5FU. That was followed with seven weeks of weekly Carboplaten, and daily (35) radiation treatments.

    But I didn't have any of the side effects that you mention.

    My treatment started Jan2009 and ended Jume2009. All scans have been clean and clear. Hopefully they'll find a chemo plan that will offer him some help and relief those side effects.

    In my thoughts and prayers, God Bless,
    John
  • Scambuster
    Scambuster Member Posts: 973
    #10
    rbw60 said:

    I had tumor on left tonsil, then it spread to all lymph nodes in neck on both sides. In operable due to size of tumors and location. I had 4 types of Chemo, 4 days after first treatment I thought I was dying, lived on toilet. Lost 60 pounds, one of the chemo drugs was administered in a pump You wore at home for 5 days. Had 3 of these treatments, then almost 40 rad treatments after the chemo. First CT looked great, second CT shows a "1/2 tumor on right lung near top. I do not know any treatment options as yet, but that the Chemo and Rads were not effective at killing all the cancer cells, so it is back to drawing board. I am 62 now and in love with my wife of 33 years, 2 sons, one grandchild, the other son will grad college 2011 and get married. Hope I live long enough to see it.

    God Bless to all,

    Robert

    Robert
    For what it's worth, you might read the Post on 'The China Study' by Dr T Colin Campbell. In brief, they have found the our diet rich in Animal Proteins is definitely linked to high rates of cancer incidence and progress. Another book or DVD is called 'Healing Cancer from the Inside' - Mike Anderson, which discusses why cancer comes back as it has in your case.

    I hope you buy the China Study book (or download it) and get to see all your family grow up.

    PS Guys, the earlier posts are more than 7 years old !

    Scam
  • Clearblue
    Clearblue Member Posts: 186
    #11
    Skiffin16 said:

    Candy ~ Similar Initial Treatment Plan
    Hi Candy, sorry to hear of you and your husbands misfortune....

    I have not had any recurrance STG III SCC Tonsil and Lymphnode. I just wanted to say that I have had similar treatment though. I was no nine weeks (three week cycles) of Cisplaten, Taxotere and 5FU. That was followed with seven weeks of weekly Carboplaten, and daily (35) radiation treatments.

    But I didn't have any of the side effects that you mention.

    My treatment started Jan2009 and ended Jume2009. All scans have been clean and clear. Hopefully they'll find a chemo plan that will offer him some help and relief those side effects.

    In my thoughts and prayers, God Bless,
    John

    AS scam said the posts from Parkrowj & Lorilyn are very old.
    Does anyone know what became of them.Pray yo G_d, everythings alright.
    So i am intersted but with trepidation, to hear how things have gone since.

    Since 1996, My wife's had SQU CC:
    base tonge,
    aesophogus,
    hypopharynx x 2

    So far operatable and she'd fought back like hell, but with recurrence
    As u know she hasnt had Rad or Chemo because she is Fanconi Anaemic.
    The "Parkrowj" post sounded different.

    Scambuster, your belief is so outright, its almost seems like, no animal protein is tantamount to cure! I will have to read that stuff but genetics is genetics for some of us.
    waiting...waiting....waiting is outright exhausting, and so is dissapointment.

    Clear.B

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