neicey's Journey with Head & Neck/Throat Cancer

Caregiver: Head & Neck/Throat Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 6 years ago, Male, Age: 54

  1. 1
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Diagnosed

    Oh No

    My dad had a swelling in his neck and jaw after having a few teeth removed in March 2011. Naturally he thought it was from the extractions. He started feeling hoarse and other symptoms but he wanted to keep his original doctors checkup that was scheduled in June. Finally after he went to the doctor he was sent to an ENT and from there it all began

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  2. 2
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Surgery

    Procedure or Surgery

    After seeing an ENT my dad was scheduled for a biopsy and also had some lymph nodes removed. The surgery that cut both sides of his neck to remove some of the infected nodes was on July 6, 2011. This surgery was tough and very painful. At this point we figured he was just going to have to have his tonsils out. We prayed so hard that it wasn't cancer.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Other

    Procedure or Surgery

    After the lymph node removal and the biopsy showing cancerous cells. We ended up going to see an oncologist. I do not remember certain dates and I regret not keeping up with all of this but its such a hard thing to go through and very hard to talk about. Appointments are being made for you before you know it and you're going places you've never been. It all happens so very fast. It was sometime at the middle of July 2011 when we began seeing the oncologist.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Dad had his port put in shortly after the first oncology visit. I remember praying with the nurse as they prepped him for the surgery. I sat in the waiting room alone for hours. My family lives 3 hours away and are not able to be with me physically through these tough times. The surgery went well and the port was ready to use by the next week.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    External radiation

    Radiation

    My dad began radiation in September of 2011. At first we thought it would only be 32-35 treatments but it ended up being 42. The maximum amount he can receive to his neck, ever. Radiation was horrible. He had to wear a mask to keep his head in place while a machine gave him treatments for 15 minutes per day, 5 days per week. The burns it gave him were awful. He went through XXX with this. Silvadene creme is very helpful to the burns but doesnt make it stop. His skin peeled off so bad and it made him very very very sick. Plus he was taking Erbitux chemo during the whole process. Very hard.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    My dad began his first chemo around the first of August. I believe he first had ciplastin/taxol and had to wear a pump throughout the week. The pump was annoying to him and one night even had blood come back into the huber needle port. We ended up having someone from vital care come check on it because we live so far from town. Had to go to the ER and wait for hours.. they kept trying to flush it and couldnt, it was scary. They eventually straightened it out at his regular doctor's office. My dad had the taxol once and taxotere twice. During his 42 radiation treatments he had a weekly treatment of erbitux over 8 weeks.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Finished treatment

    Celebration

    Dad got his last radiation treatment on November 28, 2011. What a happy day. The side effects had him so sick and he was so tired of it. We had a great Thanksgiving at home. Dad also got 6 weeks off of treatments and doctor visits. We enjoyed our time at home relaxing over the holidays. We had a fun Christmas and a great meal. We always love Christmas. We were so thankful that he got a break over the holidays.

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  8. 8
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  9. 9
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Cancer has spread/Metastasized

    Oh No

    The cancer has spread into the lungs :( I wasnt as scared about this before because it hadnt really showed up on the scans but it had gotten worse. The doctor now wanted to do ifosamide/adramycian (sp?) a 3-day treatment every 3 weeks.

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  10. 10
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Ifosumide/Adramycian is the worst chemo ever. It really hurt my dad. They call it the 'red devil' and indeed it is. He had the worst side effects and couldnt even get out of bed after taking this.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  11. 11
    • neicey
    • Experience with Head & Neck/Throat Cancer
    about 5 years ago
    neicey's Avatar

    PET scan

    Procedure or Surgery

    After another CT scan and PET scan we were told we are getting mixed reports. The cancer is better in some spots but new in others. The doctor cannot cure this cancer and hopes to just keep it at bay. This is the hardest time of our life. We will be going to see another doctor in Little Rock next week. I hope this helps everything get better.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  12. 12
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    bad news ;[

    Oh No

    The doctor in Little Rock at Winthrop Rockefeller Cancer Center did not give us much hope. We are having a very difficult time coping with this. However, we are enjoying each day and hanging on.

    1 Comment
  13. 13
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Money

    Oh No

    money is always an issue for us. I left my job to help take care of dad and see that he gets to his appointments last year. Aside from the hospital and doctor bills our home bills and general cost of living is very expensive. I have made this website in order to hopefully raise money to catch us up some and hopefully get to move back to our hometown 3 hours north of where we are now. Please check it out and pass it along if you can. Thank you -- <3 http://www.gofundme.com/bqkyw

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  14. 14
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Dad began 3 weeks on 1 week off of Taxol. 1 Hour per week. This is not NEAR as bad as the other chemos he has been through. We will go for another scan in a couple of months.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  15. 15
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    CT scan

    Procedure or Surgery

    Dad had a CT scan done on July 16 2012 at around 1pm. We were supposed to get the results that following Friday. The doctor called me at home a few hours later to tell me that they found lesions on my dad's brain in the scan and to come in first thing in the morning for a MRI on July 17.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
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  16. 16
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    MRI

    Procedure or Surgery

    The MRI took place at 9am on July 17 in Texarkana. We had to meet with the radiologist after this.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  17. 17
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Radiologist Appointment

    Other Care

    We went to see the radiologist (7/17/12) who did the 42 previous treatments to dad's head&neck. He said that the tumor would have to be treated with radiosurgery 5 times.

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  18. 18
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Met with neurosurgeon

    Other Care

    My dad had to meet with the neurosurgeon on 7/9/12. This was a pointless visit and costed us $31 plus $15 in gas to just see him and at the early morning! And for one minute! All he did was introduce himself. grr. It is so hard on my dad getting out especially that early and we don't have the money to keep doing all these appointments. I wish they'd make it easier on cancer patients.

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  19. 19
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Pictures taken of brain

    Procedure or Surgery

    The radiology place took a bunch of pictures of dad's brain after we met the neurosurgeon. [7/18] This lasted a while but wasnt as uncomfortable as getting the mask for radiation made [7/17]

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  20. 20
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Surgery

    Procedure or Surgery

    Dad began his 1st of 5 radiosurgery treatments at 6:50am on July 20, 2012. It was hard on him getting out that early and being in Texarkana [45min away] we had already made 5 trips to and from there that week. And his doctor couldn't reschedule his afternoon appointment to morning to save us a trip. We got the first radiosurgery and we went home.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  21. 21
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Doctor's Appointment

    Other Care

    We made another trip to texarkana on July 20, 2012 at 1pm. My dad gets so upset because its expensive. Copay and gas but we HAVE to fight the best we can <3 The doctor did not offer hope. The brain tumor is about 2.2cm and dad's lungs have worsened. His neck has remained the same but it hurts him so bad. It is stiff and he doesn't have much energy lately. The doctor didn't want to give him anymore chemo which really upset me! I understand he says he cannot cure this but why give up? The doctor had a different chemo we haven't tried. Dad has been two weeks without chemo this time and will be receiving Gemzar chemo on Monday July 30.

    1 Comment
  22. 22
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    External radiation

    Radiation

    The radiosurgery went quickly over 5 days but was very tiring.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  23. 23
    • neicey
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    neicey's Avatar

    Money

    Oh No

    I am still trying to raise money to help with expenses and help us move back to our hometown to be near friends and family. If you would please pass this link along it would help me tremendously <3 http://www.gofundme.com/bqkyw

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