Playing the waiting game

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Labs, Doctor's appointmen, and Keytruda infusion yesterday. Mostly everything went well.  My oncologist went over the CT scan in detail showing me the pictures.  Not much different from what my GP had to say last week, Only the tumor in my neck is growing.  He says that happens with immunotherapy, where most will stop growing and one will continue to grow, so he is not disappointed with my treatment and wants to continue that.  But he is concerned with the tumor in my neck.  He is recommending radiation on that spot.  He thinks that if the radiation would break the tumor up a little the immunotherapy would have a better chance of working on it.  It is already causing pain in my neck, head, and shoulder, and the more in grows the more problems it can cause.  So we will try that approach and the waiting begins.  Waiting for referrals, consult, and scheduling.

i have had radiation before,  so I don't really understand why I am so afraid of this.  My oncologist is going to recommend low dose that will probably last for 10-15 treatments, because of the location.  It is between nerves and blood vessels and close to my windpipe.   And I am guessing that they will make me one of the mesh masks to wear.  I am not good at laying still and I hate that little table you have to lay on.

To top in all off, I found out  Sunday that the radioligist that did my pelvic radiation has moved to Californi.  I really liked him.  Obviously, I am having my own pity party.

God has seen me through the rest of this, I know he will be with me through this, too.

Sending my love, hugs and prayers, Lou Ann

Comments

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    edited December 2016 #2
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    It sounds like mostly VERY

    It sounds like mostly VERY good news and if they can isolate that neck tumor and treat it, then all your tumors would be taken care of as the Keytruda continues to work.  Hopefully the side effects from the radiation will be minimal (((Lou Ann))).

    Love,

    Eldri

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited December 2016 #3
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    One question

    When I asked my gyn onc why he didn't do the sandwich treatment for me he said it's because the radiation damages the blood vessels possibly impacting the effectiveness of chemo in that area. I'm thinking that's a question you may want to ask whomever is handling your Keytruda infusions...will the radiation to the tumor impact the delivery of the Keytruda to it if blood vessels get damaged or are they able to really pinpoint the radiation to prevent that from becoming an issue. With Keytruda such a new treatment, I wonder if they know what impact giving radiation at the same time would have.

    I don't blame you for being afraid of this...I think past threads show that we all are when we have to face it. I hated the movement of the arms around me and especially that tone when the dose was  delivered. Why do they have to have that?Thinking about the support I recieved from you and others here seemed like all that kept me from jumping off the table at times. I truly wish you didn't have to face doing this again, but picture me sending all of my strength and prayers for this to be easy for you. God bless you!

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited December 2016 #4
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    MAbound said:

    One question

    When I asked my gyn onc why he didn't do the sandwich treatment for me he said it's because the radiation damages the blood vessels possibly impacting the effectiveness of chemo in that area. I'm thinking that's a question you may want to ask whomever is handling your Keytruda infusions...will the radiation to the tumor impact the delivery of the Keytruda to it if blood vessels get damaged or are they able to really pinpoint the radiation to prevent that from becoming an issue. With Keytruda such a new treatment, I wonder if they know what impact giving radiation at the same time would have.

    I don't blame you for being afraid of this...I think past threads show that we all are when we have to face it. I hated the movement of the arms around me and especially that tone when the dose was  delivered. Why do they have to have that?Thinking about the support I recieved from you and others here seemed like all that kept me from jumping off the table at times. I truly wish you didn't have to face doing this again, but picture me sending all of my strength and prayers for this to be easy for you. God bless you!

    My oncologist

    has already addressed that question.  Since the effect isn't known yet we are going to hold the Keytruda until the radiation is finished.  So it will be sandwiched like the Taxol/ Carbo  radiation sandwich.

    Oddly,enough, the first time around I was terrified of falling asleep and rolling off the table.  Everyone told me that would never happen, but the tech you gave me a PET Scan told me that his sister did fall off the radiation table.  Last time I was by myself, this time I will have the support of all you gracious ladies.  That will make it easier.

    Lou Ann

     

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Support you do have- wish it was in person!

    Lou Ann just wanted to add to the voices that are chiming in and sending you tons of love and support.  There is no way around these things- the only way is through and you are truly marvelous inspiring strong lady to follow.  Know that we are sending prayers and love and all the healing ((((HUGS)))) we can as you move through all the necessary steps.  <3<3  God has this!  Psalm 139 <3<3

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
    edited December 2016 #6
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    Lou Ann, it is ok to have a

    Lou Ann, it is ok to have a pity party!!!  You are always so strong - we all need our moments - and where better than coming here to people who love and support you.  HUGS dear one.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited December 2016 #7
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    Sending Support

    Oh Lou Ann. I know what you mean. I had a much harder time with the radiation mentally than the chemo. And that table....reminds me of a table they use in a morgue!!!  But we're all behind you and sending our positive thoughts to you for each session. I would carefully choose my music for each session and try to concentrate on that. 

  • Soup52
    Soup52 Member Posts: 908 Member
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    Much support for you Lou Ann!

    Much support for you Lou Ann! It sounds like they have a good plan for you. You deserve to have a pity party. You have been through so much! Prayers that the treatment is successful!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    Lou Ann, Pity Party... not

    Lou Ann, Pity Party... not you... Apprehensive - OK! You are one of the strongest women I know. Your strength and attitude have helped more people than you will ever know. And, I'm glad you came here to share your next steps and let us know that you needed some support along the way. We are all here for you. Cry, scream, pray and then once again one foot in front of the other to get you back to a healthy you! Your news is so promising.  Just know that you have a bunch of arms hugging you tightly while you are laying on that darn table. Because we will all be there with you.

    Love and Hugs,

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Lou Ann, you are one of the

    Lou Ann, you are one of the strongest women I know.  You are allowed the occasional "pity party."  We all throw one of those for ourselves every once in a while.  Just picture all of us in the room with you while you are on that table, holding your hand and holding you close.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited December 2016 #11
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    Hang in there, Lou Ann!

    It seems perfectly normal to be apprehensive about getting radiation so close to your windpipe but it also sounds like your doctors are being very careful about it being very targeted and using a low dose. Radiation therapy has come a long way in just a few years. Maybe you can find out more about the exact type you'll be getting during your next consult and that can help ease your fear? Sometimes just understanding it better can make it seem less frightening. Hang in there, Lou Ann! You can do it!!

  • janaes
    janaes Member Posts: 799 Member
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    Lou ann I dont know that i

    Lou ann I dont know that i have much to say, but i wanted to let you know i am hoping for the best for you.  Love you tons. janae

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    edited December 2016 #13
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    Praying for you.  Sending my

    Praying for you.  Sending my share of support to you too as you go through this next step.  trish

  • henhill
    henhill Member Posts: 123
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    Radiation

    The only thing I have whined over for the whole two years.  Hate it and fear it, so I feel your pain.   You will get through and I pray it will spare you any trouble.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited December 2016 #15
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    Thank you all

    This is why I like the site so much.  You ladies offer the kind of support you can't get anywhere else.  I heard from my Gyno-oncologist's associate today and he is in complete agreement that radiation is the way to go this time.  We value his opinion so much and am glad he had his associate call.  It does put my husband's and my minds at ease.

    Hugs and prayers to all of you, Lou Ann

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited December 2016 #16
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    Hi Lou Ann:

    Hi Lou Ann:

    It seems that the more stuff we have to go through the tougher it gets.  Not that its hard its just that we just hate to go do this stuff!   An example, you probably have gone through a lot of pain from surgeries, etc., and pushed through it with ease, but get a little splinter and it hurts like heck!   

    Its ok to have a pity party.   We're here with you!

    Hugs,

    Kathy

  • ConnieSW
    ConnieSW Member Posts: 1,680 Member
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    Hey, Lou Ann, the amazing,

    I would find the radiation scarey, too.  When you know the date and time, let us know.  We will target you and that darn tumor with healing thoughts as much in real time as we can.  I send you my love.