Hello to all from a new member

luv2cut1
luv2cut1 Member Posts: 288
edited March 2014 in Head and Neck Cancer #1
Hi All,

I have been following this board for some time and finally decided to take the plunge and join. My husband was diagnosed with Stage II SCC of the supraglottis in May 2008. Treated with chemo/radiation which ended in August 2008. Got all clear in December. In February, there was a lump on his neck which FNA revealed only CLL (like another member here, my husband has had CLL since 2000 - watch and wait). Lump kept growing bigger and surgery was scheduled for June 2009. SCC was found in lymph nodes, so he immediately had radical neck dissection with pectoral flap reconstruction followed by chemo reirradiation. Treatment ended September 2009. April PET was clear. July ENT exam was clear. He is currently scheduled for another followup PET in November. He seems to be doing great, but I am constantly having anxiety. This message board is so wonderful. Everyone here is so supportive and knows exactly what it is like. I hope that I will be able to provide some support to the people here and give back some of what they have given me.

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
    Welcome!
    Always good to hear from new folks. Please stay in touch. It's good to have a support system.

    Deb
  • kimmygarland
    kimmygarland Member Posts: 312
    #3
    D Lewis said:

    Welcome!
    Always good to hear from new folks. Please stay in touch. It's good to have a support system.

    Deb

    Welcome!
    Sounds like you and your hubby have been down a similar road as my husband and I. He had hypopharynx tumor 7/2009 - had chemo/rads. Then in 7/2010 - cropped up again and had to have radical neck, as well as flap surgery (they took his from forearm). His surgery was 9/15 and he is still no where near recovered. However, docs say all is going as it should be - flap is getting good flow, got clean margins on surgery, wounds are healing, etc. He can't swallow anything but a sip of water but thank goodness for the peg tube.

    How is your husband? Can he swallow or is he on tube, or both?
    How are YOU? The caregiving is so hard.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #4
    kimmygarland said:

    Welcome!
    Sounds like you and your hubby have been down a similar road as my husband and I. He had hypopharynx tumor 7/2009 - had chemo/rads. Then in 7/2010 - cropped up again and had to have radical neck, as well as flap surgery (they took his from forearm). His surgery was 9/15 and he is still no where near recovered. However, docs say all is going as it should be - flap is getting good flow, got clean margins on surgery, wounds are healing, etc. He can't swallow anything but a sip of water but thank goodness for the peg tube.

    How is your husband? Can he swallow or is he on tube, or both?
    How are YOU? The caregiving is so hard.

    Thank You for the Welcome!
    Thank you so much for the warm welcome!

    Kimmy, it does sound like we have very similar stories. I am very happy to report that my husband is now doing very well, so for you, there is light at the end of the tunnel! The surgery (summer 2009) was very difficult and my husband had nowhere near recovered by this time, either. Even though recovery seems slow, it sounds like things are going as well as possible so far.

    My husband never had the peg tube. He refused both times. He actually did pretty well without it - ate a lot of soft foods. He can now eat anything, but he is more sensitive to spicy foods than he used to be.

    Does your husband have to have any further treatment? My husband had positive margins and extracapsular spread so they recommended aggressive treatment with chemo (carboplatin and taxol) and re-irradiation. It was brutal, but he made it, and, although we never know what the next PET will bring, things are good now. Please keep us posted as to both you and your husband's progress.

    You are right, caregiving is so hard. I cannot say that these last two years have been anything but torture watching Pat go through what he has - not to mention the fear and anxiety upon diagnosis, during treatment, and after. Please let us know how you are doing, and thanks so much for asking. If I can be of any support, please let me know. I have found so much support on this board, it is a great place.

    Here is to looking forward to your post in a year saying how well you and your husband are doing!

    Myka
  • Pam M
    Pam M Member Posts: 2,196
    #5
    Hello
    Hi - glad you took the plunge and joined. As you already know, the folks here are a wealth of information and support - with your family's experiences, I'm sure you'll be a great help, too. I have my second post-treatment PET next month - here's hoping for clean scans for both of us.
  • Scambuster
    Scambuster Member Posts: 973
    #6
    CLL
    Hi L2C1,

    Welcome 'on board' though sorry you had to join. I have an an interesting story about a friend who has CLL on my Blog, you can click on my picture/name to the left and go to the BLOG section.
    Regds
    Scam
  • luv2cut1
    luv2cut1 Member Posts: 288
    #7
    Scambuster said:

    CLL
    Hi L2C1,

    Welcome 'on board' though sorry you had to join. I have an an interesting story about a friend who has CLL on my Blog, you can click on my picture/name to the left and go to the BLOG section.
    Regds
    Scam

    Thanks!
    Thanks for the welcome! Pam M. - yes, here is hoping for clean scans for both of us!!! I am looking forward to hearing your results! Scam, thank you for the info. I read the blog and TCM is definitely something worth looking into. I appreciate all of the info on this board and I truly believe that the information here will help all of us evaluate our options and have a better chance for a positive outcome. Thank you all! I am so glad I took the plunge!
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #8
    Welcome
    Welcome aboard, always nice to see caregivers here and sharing information and looking for help. Caregivers are special and I believe they have it harder than the survivor. Anxiety is our way of life, it will get easier as the years go by but it will not go away. Thank You for helping all those here on what I wish I had 14 plus years ago. It would have helped so much.

    We look forward to the good news following his scan in November.

    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    fisrpotpe said:

    Welcome
    Welcome aboard, always nice to see caregivers here and sharing information and looking for help. Caregivers are special and I believe they have it harder than the survivor. Anxiety is our way of life, it will get easier as the years go by but it will not go away. Thank You for helping all those here on what I wish I had 14 plus years ago. It would have helped so much.

    We look forward to the good news following his scan in November.

    John

    Hi. Welcome to you and your
    Hi. Welcome to you and your hubby. I am glad he has you for a caretaker. It's a long hard road and it really sucks when you have to go it alone. Best to both of you.

    Sweet
  • Glenna M
    Glenna M Member Posts: 1,576
    #10
    Welcome
    It always seems so wrong to welcome someone to this club because of the reason you are here but you won't find a better group of people than those who post on this forum.

    I was diagnosed in May '09 with stage 3 SCC of the supraglottis (and NSCLC left lung). I finished treatment in Sept.'09 and am still in remission one year later. I'm sure it is normal for the caregivers to suffer from anxiety, I know my husband worries every time I get a sniffle or seem more fatigued than usual. You are a very loving caregiver and with you by his side I am sure he will continue to do well.

    Stay strong,
    Glenna
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Myka

    Welcome to the CSN family

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