Tx update

hwt
hwt Member Posts: 2,328 Member
in Head and Neck Cancer #1

Just checking in. Started my 2nd session today. Each session is 1 week taxol and ebitux then 2 weeks of only erbitux. No nausea. 4th week I still have my hair, it has started to hurt and thinned some this week. Imagine it will be gone within the week.  Some acne rash but not too bad, a light make-up covers. Thanks, for the input on the rash Matt, that really eased my mind and it was not worth the worry and anticipation. Tender pads on thumb and index fingers but not split open and no pain. At the end of 2nd session, I will get another CT to see if we go for 3 sessions before SBRT, stop at 2 and go with the SBRT or, if there are any other recurrances show up, will have to rethink plan. Will rely on Mayo for final decision. Prayers that there is nothing new on scan in 2 weeks.  One guy brought in a full sheet cake today as he finished his 100th session!. I asked the nurse and she said each of his sessions was 3tx so he had been there 300 times! He looked good and has a fantastic attitude. Another man, in his 70's was back being treated 8 years for pancreatic cancer which after 5 yrs.of remission has spread to his liver. 5FU had held it at bay but was no longer doing the job.  They have made huge strides with that cancer.  The family right next to me was a joy to be around. A 50 yr old man, wife, two sisters, Mother, and 3 friends. Sadly, he also had pancreatic cancer that has now shown up in his lung. He is being treated by MDAnderson and had surgery there but getting his chemo at home, here in St Louis. Small world, his son is a friend of my nephew and they had been to my brother's house for my nephew's graduation party.

So far, I've had one down/lazy day a week following tx.usually Saturday or Sunday. I was told today that my immune system would be most vulnerable in 10 days. Last week my white count had dropped but today back to normal. Vitals text book perfect. I forget Hohn catheter is even there and Glad Press n Seal is awesome to cover it when showering. Have never had a port but speak highly of the catheter. When I asked about difference, ONC said Hohn was good for short term situation. Since getting it, the old stiffness in that shoulder has actually eased up. So far pleasantly surpised on how tx has gone :-) 

 

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Wow Candi....you sound SO good!!

    ....and only down for one day a week?  That is marvelous!  It sounds like you're handling this treatment so well....Love that you are such an upbeat person with grit.....you are, ya know. Laughing 

    I'm interested in this Hohn catheter.....does it go in at the same place as a port (upper chest)?  Amazing that getting it installed helped out a stiff shoulder.....wonder how that happened. 

    Praying hard that nothing is "newsy" in you upcoming scan, except the good news.....will be tucking you into my pocket, too....

    p

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    good update

    Hi Candi,

    It is nice to hear treatments are “kind to you”.  I am glad the Erbitux is behaving.  It is nice that you are finding interest in others; a lot of great people get ill.

    I hope the rest of your journey is uneventful.

    Matt

  • jim and i
    jim and i Member Posts: 1,788 Member
    #4
    CivilMatt said:

    good update

    Hi Candi,

    It is nice to hear treatments are “kind to you”.  I am glad the Erbitux is behaving.  It is nice that you are finding interest in others; a lot of great people get ill.

    I hope the rest of your journey is uneventful.

    Matt

    I second Matt. Praying the ct

    I second Matt. Praying the ct shows no new growth.

    Debbie

     

  • donfoo
    donfoo Member Posts: 1,773 Member
    #5
    great

    sounds like things are going well. Hang in there. don

  • katenorwood
    katenorwood Member Posts: 1,912
    #6
    prayers and hugs sent !

    Candi,

    Hello lady !  When you post the words just pop at me.  It's almost as if I'm seeing others through your eyes.  You have a real gift.  I pray the tx's continue to be light in any negativity.  And also the the CT shows only great news.  Katie

  • KB56
    KB56 Member Posts: 318 Member
    #7
    Update

    Sounds like so far so good and you're doing well all things considered!    Good luck as you continue the journey and it will be over before you know it!

    Keith

     

     

     

  • j4mie
    j4mie Member Posts: 218
    #8
    Thank you for the update!

    It sounds like things are going well...considering. Saying many, many prayers, here in snowy IL, that the CT is all good! Hang tough!

    Jamie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    Candi, you sound wonderful! 

    Candi, you sound wonderful!  i'm so glad tx is going so well and some things (pain) have even improved.  you are really a tough lady and your are showing cancer who the BOSS is!!  Keep up the hard work, you are doing great.  Keeping you in my prayers and praying real hard that the scan shows NOTHING new!  be sure to keep us posted on how you do.

    God bless you, Candi.

    dj

  • Greg53
    Greg53 Member Posts: 849
    #10
    debbiejeanne said:

    Candi, you sound wonderful! 

    Candi, you sound wonderful!  i'm so glad tx is going so well and some things (pain) have even improved.  you are really a tough lady and your are showing cancer who the BOSS is!!  Keep up the hard work, you are doing great.  Keeping you in my prayers and praying real hard that the scan shows NOTHING new!  be sure to keep us posted on how you do.

    God bless you, Candi.

    dj

    Good Report

    Hey Candi,

    Been thinking about you.  Glad to hear the good report! Positive thoughts and Mojo coming your way!!

    Greg

     

     

  • hwt
    hwt Member Posts: 2,328 Member
    #11
    Greg53 said:

    Good Report

    Hey Candi,

    Been thinking about you.  Glad to hear the good report! Positive thoughts and Mojo coming your way!!

    Greg

     

     

    Thanks everyone

    I guess since the 2012 rads/chemo were so hard on me that I've come to expect the worst and turn out very pleasantly surprised when it's nothing like the original tx. I wake everyday thinking today is going to be the day I lose my hair and it's still there. Now, with as few as 2 treatments (maybe 5) left, it seems like a waste to lose it now but it's gonna do what it's gonna do. I read about a cooling cap that can be rented to wear during tx to help retain hair. Unproven if it affects benefits of tx so I wouldn't risk it. I talked to one girl who used it and she said it was so cold she could only tolerate it 10 minutes. When I talk about the people I meet at tx. I feel like I'm turning into my Mother who never met a stranger in her life :-) I introduced myself to girl Thursday and asked if she had been there in 2012 as she looked familiar, she had been. Having felt so bad myself the first go around, you can easily tell who doesn't feel like talking or want to. One guy had a towel over his eyes and his wife wanted to talk so we did, Next thing you knew he was chiming in. Everybody has a story.  Phrannie, I've never had a port, both times have had the Hohn. Yes, it is a couple of inches below my collar bone, off to the side. One would think a bra strap would irritate it but that isn't the case. The two little tubes hang out of it but they haven't caught on anything and don't cause any issues with clothing. They change the clear dressing on it weekly when I have lab. Has worked like a charm for me.

    My best to everyone and thanks for all the support, well wishes and prayers.

    Candi 

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