Down in the Dumps and Need Prayers

Hi Guys,

Haven't been posting much, as I have tried to be on the leukemia board. As you may remember, my husband Pat just recently got NED on head and neck cancer 2 years out. Unfortunately, he also has chronic lymphocytic leukemia. He has had it for 11 years and has been on watch & wait (no treatment). Tests in November showed progression, and after a second opinion at University of Colorado Cancer Center, treatment is now recommended. He is now going through all diagnostic tests to determine prognosis and likely response to treatment. Please pray that the diagnostic tests come out well, as if they do, he can hopefully expect a good response to treatment and a long remission. CLL is not curable, but under the right circumstances it is controllable for long periods of time. In addition, they are coming up with new treatments every day. If Pat can have a good response to treatment, it will buy him time until they come up with even better treatments.

I very much worry about any treatment increasing his chances of recurrence of SCC, as skin SCC has been known to behave very aggressively during and after treatment for CLL. The doctor at UCH did not think his chances would increase. I guess I just need to trust the doctors that study this all of the time instead of incessantly worrying.

Pat had bone marrow biopsy yesterday. Next appoint with doctor is on 29th - with treatment scheduled to start January 3. You guys have been so important in helping us through head and neck cancer and your thoughts and prayers would be very much appreciated.

I pray for all of you every day.

Thanks,

Myka
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Comments

  • luv2cut1
    luv2cut1 Member Posts: 288
    P.S.
    The leukemia board is not very active, especially not for CLL. CLL is known as an indolent disease, often not requiring treatment, so not many people post.

    Thanks again.

    Myka
  • ac
    ac Member Posts: 88 Member
    Prayers going out to you and Pat
    Myka,

    My thoughts and prayers go out to you and Pat for a favourable outcome.

    Andrew
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    PRAYER HEADED YOUR WAY
    Myka, a prayer and a positive thought from my family to yours. I am confident Pat will come out the winner in this battle too.

    Best!!

    Mike
  • Crazymom
    Crazymom Member Posts: 339 Member

    PRAYER HEADED YOUR WAY
    Myka, a prayer and a positive thought from my family to yours. I am confident Pat will come out the winner in this battle too.

    Best!!

    Mike

    Payer
    Praying...I believe in miracles....keep the faith. Crazy mom
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Quite a burden for both of you
    Here's to easier times. My prayers are with you.

    Pat
  • jim and i
    jim and i Member Posts: 1,788 Member
    prayers
    My prayers are with you both. May the test and prognosis come out positive and may you be able to enjoy the holidays.

    Blessings,
    Debbie
  • mixleader
    mixleader Member Posts: 267 Member
    Best Wishes
    It sure sounds like both you and your husband are fighters. Obviously, both of you are used to some hard times and treatments. My best wishes and prayers are with you and Pat in this struggle. Your situation sounds similar to what my wife has been going through. Last year, I was NED and this year my cancer has spread and I am fighting again. She and I are both holding up and you will too. Thank God for caregivers. Go beat this thing and live a long happy life.

    Roger
  • Glenna M
    Glenna M Member Posts: 1,576
    Myka, so sorry to hear about
    Myka, so sorry to hear about your husband's recent development. Praying for good reports and that he will respond favorably to treatment.

    You are both strong people who will make it through this together.

    Stay strong,
    Glenna
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Myka
    Sorry to read about this latest news. :(

    Please know that you are both in my prayers.
  • Hal61
    Hal61 Member Posts: 655
    luv2cut1 said:

    P.S.
    The leukemia board is not very active, especially not for CLL. CLL is known as an indolent disease, often not requiring treatment, so not many people post.

    Thanks again.

    Myka

    Indolent board
    Hi Myka, sorry to hear your husband's CLL is progressing. I believe if a doctor is willing to prognosticate, as the UCH doc did, it's a good sign. A lot of doctors would rather take a sharp stick to the eye than predict on the situation you've described. If the doc says the CLL treatment won't increase the possibility of SCC activity, then you can be sure he has a reason to believe so.

    I wish you and Pat the very best, and that the CLL is stopped in its tracks. That'll do until some better medicine shows.

    Hal
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    Myka
    Her's hoping the test results come out as positive as they possibly can and even more so for a good response to treatment and a long long long period of remission. Stay strong. Cheers.

    Jimbo
  • luv2cut1
    luv2cut1 Member Posts: 288
    Thank you so much everyone
    I am so grateful for the support on this board! I had selfishly fallen into my own pity party, and then I heard from all of you who have either been through, or are going through, very similar situations. You guys really get it, and make me not feel so alone. If you guys can be so strong, caring and optimistic then so can I. We have a fight to win!

    Thank you much for your kind words and prayers. Mine are with you as well.

    Our youngest graduates from college today. Thanks to you all I am feeling much better and plan to fully celebrate his accomplishment.

    Thank you.

    Myka
  • Hondo
    Hondo Member Posts: 6,636 Member
    luv2cut1 said:

    Thank you so much everyone
    I am so grateful for the support on this board! I had selfishly fallen into my own pity party, and then I heard from all of you who have either been through, or are going through, very similar situations. You guys really get it, and make me not feel so alone. If you guys can be so strong, caring and optimistic then so can I. We have a fight to win!

    Thank you much for your kind words and prayers. Mine are with you as well.

    Our youngest graduates from college today. Thanks to you all I am feeling much better and plan to fully celebrate his accomplishment.

    Thank you.

    Myka

    Hi Myka
    Family: when one hurts we all hurt together, God bless

    Hondo
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    luv2cut1 said:

    Thank you so much everyone
    I am so grateful for the support on this board! I had selfishly fallen into my own pity party, and then I heard from all of you who have either been through, or are going through, very similar situations. You guys really get it, and make me not feel so alone. If you guys can be so strong, caring and optimistic then so can I. We have a fight to win!

    Thank you much for your kind words and prayers. Mine are with you as well.

    Our youngest graduates from college today. Thanks to you all I am feeling much better and plan to fully celebrate his accomplishment.

    Thank you.

    Myka

    Prayers and good thoughts
    Coming your way, Myka.

    And congratulations on the graduation! I know you are so proud.
  • Redbanker
    Redbanker Member Posts: 36
    CLL & University of Pennslyvania
    Hi Myka,

    Here's another ray of light for you and your husband, the remarkable results that UPenn has had with CLL and real people. This got tremendous coverage earlier this year so you may be aware of it already. I heard anecdotally that Sloan might also be using the same treatment, but can't find that online. Here's the headline from the Penn press release: Genetically Modified "Serial Killer" T Cells Obliterate Tumors in Patients with Chronic Lymphocytic Leukemia, Penn Researchers Report. The New York Times reported on this in late August/early September.

    Nancy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Thoughts & Prayers...
    Hi Myka, you guys are definitely in my Thougths and Prayers...

    Praying for the best possible out come.

    JG
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Myka
    Keeping both you and Pat in my prayers that the test come out good.

    God keep & bless you both while in His workshop
    Hondo
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    Hondo said:

    Hi Myka
    Family: when one hurts we all hurt together, God bless

    Hondo

    True words
    Hondo,

    You may have heard an old saying "Those that say the least, say the most"

    You wrote--Family: when one hurts we all hurt together, God bless

    So true....

    My Best to You and Everyone Here
  • Hondo
    Hondo Member Posts: 6,636 Member
    luv2cut1 said:

    Thank you so much everyone
    I am so grateful for the support on this board! I had selfishly fallen into my own pity party, and then I heard from all of you who have either been through, or are going through, very similar situations. You guys really get it, and make me not feel so alone. If you guys can be so strong, caring and optimistic then so can I. We have a fight to win!

    Thank you much for your kind words and prayers. Mine are with you as well.

    Our youngest graduates from college today. Thanks to you all I am feeling much better and plan to fully celebrate his accomplishment.

    Thank you.

    Myka

    Hi Myka

    Remembering and keeping you both in prayer

    Hondo
  • Pam M
    Pam M Member Posts: 2,196
    Hoping
    Myka,
    Just saw your post - add me to the list of folks asking/hoping/praying. Congrats on the graduation. I like the new pic.