SOS again....conference time ladies

dorion
dorion Member Posts: 183
edited March 2014 in Ovarian Cancer #1
Hello my Darlings....I know long time and always I come in with questions and encouragement!

I was preparing to start my topic when I read the thread (damn it I forgot her name) from the sweet lady who has survived this dreaded disease for 11 years and 10 months!! Can u imagine??? What floored me is when she wrote that she's been through 5 rounds of carbo/ taxol. I've had 2 rounds of this and my last one was in May sometime. On Tuesday I had my appointment with the oncologist to follow up my results from my ct scan. He told me that the cancer is showing some signs of progression and to do any more of the carbo/taxol chemo would be (paraphrasing) a waste of time beings that the cancer will no longer react to this combo. So he suggested another drug and for the life of me I can't think of the name of it, it starts with a "k" with this one I won't go through hair loss and all the other usual symptoms that the other causes.


I thought of it this way, at least it is small progression which in my mind it's better than it progressing fast...but now I"m wondering if he's not being straight with me and he's thowing in the towel....nah that can't be it! He also suggested that I do this clinical trail treatment and this is what I wanted to ask you guys.

The drugs are temsirolimus and bevacizumab to treat certain types of cancer. It goes on to say that the combination of these two drugs are not approved to treat my type of cancer. But Health Canada has allowed thier use in this clinical trail study.

It also reads that because I'm not responding to the standard therapies or there is no standard therapy for my type of cancer. Now if I only had 2 rounds of carbo/taxol and this lady had 5 rounds how can they tell that my cancer isn't reacting to the original I've been on? Afer all I did have some breaks in between.......What should I do? I'm a little confused and terrified all over again. Just when I think I've got it in the sack it comes back to bite me in the rear! The Oncologist that suggested this was the head of this department, just the sight of him walking in the office was enough to soil my pants. Lately I've been so tired too,with a tremendous amount of weight loss, I've gone down from 159 from chemo and now I'm down to 119 lbs, I haven't been this light since I was a teenager. All I do lately is sleep, that scares me too! With morbit thoughts floating around my head with the back seat driver of my thoughts telling me that this could be my last xmas. I try not to give it any merit and try to brush these thoughts away but at times it's so strong. Anyone else go through this? I am so damn scard (did I say that already?). I know that you guys will come to my resue, you always do, no matter what. Thank you so much for being here and for reading my rantings. Love to all of you guys always!!

Linda

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    DEAREST LINDA
    So sorry to hear this news, Linda. As you said, it is so good and encouraging to read about the 11+ year survivor. And you know how long Bonnie has been going through this and so many others. I know the thought of continuing this process doesn't sound like fun, but I hope we can send some mighty huge encouragement to you today.

    That's quite a weight loss, and totally understandable. You're body is going through much. Of course it would make you fatigued and want to sleep. You need the rest to heal and recover. And I'm glad to hear that you have some options for other treatment. I'm not familiar with these new drugs, but maybe you'll get feedback from someone else.

    Till then, I hope that you will have a very Merry Christmas, Linda, especially wit your daughter. Please keep us posted, especially once you start treatments.

    LUV, HUGS, PRAYERS,
    Monika
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    Dearest Linda,
    I am sorry you are at this crossroads. So far I am at the end of taxol and carbo.... I have had a lot of these two wonders and they are no longer doing the job for me either. This morning's paper had a report on Breast cancer study...with a combination of Herceptin and Tykerb from M.D. Anderson Cancer Center with positive results. There is a big meeting in San Antonio at present. You might google the studies of the drugs they want to try on you and read what you can about them.
    Your weight loss is a worry to me. Are you eating your ice cream? Take care of yourself. You are not alone, as we are praying for you and pulling for you to beat this monster down again. (((Hugs and prayers))) Saundra
  • dorion
    dorion Member Posts: 183
    #4
    got it
    Thank you Mopar and Sandra for your reply. I will promise to keep you posted once these treatments start. I'm always feeling like they drop the ball with me, the nurse should have called me Wednesday to discuss this treatment and I'm suppose to go in Tuesday to start, but I won't start until I know for sure that I qualify for this trail. I will post you on Tuesday when I get back from my appointment and let you know how it went. Wish me luck and a lots of prayers.
    Meanwhile I'm going to try to go to bed early and get some sleep so I don't sleep all day (again). Love to you as always. C U soon

    Linda
  • Barbara53
    Barbara53 Member Posts: 652
    #5
    sleeping
    Linda, for what it's worth, I've noticed that my mother (3C in Feb 09, chemo thru June) cycles in and out of periods when she wants and needs to sleep a lot. They seem to last a few days, and then she'll simply opt to rest and read for a while in the afternoon rather than sleeping, or go all day without a break. The sleepy times are kind of scary, but when you've been through so much, they are probably natural. Good luck with your next steps. It's actually great that you're one of the people the department head thinks about when he gets up in the morning.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #6
    Dearest Linda
    Bummer. This is a tough disease. Keep praying and we will all be with you. They can do remarkable things with chemo. Friend of my mom's diagnosed 1/09 stage 4...NED. 2 little boys aged 4 and 7. In August we thought there was no hope and now...she's dancing with NED..Why? because her doctors tried and tried just as yours are doing to find the right recipe... It's normal to have the "thoughts". We all do if we're to be honest with ourselves. This is serious scary stuff...As Saundra always says though, Only God knows what is going to happen...ENJOY THIS X-MAS with your beautiful daughter!!! Rest all you need. It's healthy..your body and souls have taken a pounding...All my heart.Lisa
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #7
    Lisa13Q said:

    Dearest Linda
    Bummer. This is a tough disease. Keep praying and we will all be with you. They can do remarkable things with chemo. Friend of my mom's diagnosed 1/09 stage 4...NED. 2 little boys aged 4 and 7. In August we thought there was no hope and now...she's dancing with NED..Why? because her doctors tried and tried just as yours are doing to find the right recipe... It's normal to have the "thoughts". We all do if we're to be honest with ourselves. This is serious scary stuff...As Saundra always says though, Only God knows what is going to happen...ENJOY THIS X-MAS with your beautiful daughter!!! Rest all you need. It's healthy..your body and souls have taken a pounding...All my heart.Lisa

    (((((Linda)))))) The uncertainty is so very hard.
    All I can say in comfort is that, you can look back to other times when it all seemed so dark and scary, and then things got better again. Over and over. This, too, will be like that, and you will look back and wonder why you were so terrified and sad. That's how it has always been for me anyway. I remember the fear and pain I have already endured, and the joy and well-being that always eventually followed each down cycle, and it helps me to cope with what is a temporary visit at the 'bottom' of the roller coaster ride of life before things swing back up again for me. You've developed some REAL internal strength already and you know it. You're just tired now, but soon you will reach down inside and unearth that coping power you have earned at such a cost. And a treatmnent decision will be made, and the indecision over, and the battle plan set in action. And you'll go on and regain your joy and optimism. With my recent recurrance I am with you in the 'downs', and so I offer you the pep talk I keep repeating to myself. (((((Linda))))))
  • dorion
    dorion Member Posts: 183
    #8
    mopar said:

    DEAREST LINDA
    So sorry to hear this news, Linda. As you said, it is so good and encouraging to read about the 11+ year survivor. And you know how long Bonnie has been going through this and so many others. I know the thought of continuing this process doesn't sound like fun, but I hope we can send some mighty huge encouragement to you today.

    That's quite a weight loss, and totally understandable. You're body is going through much. Of course it would make you fatigued and want to sleep. You need the rest to heal and recover. And I'm glad to hear that you have some options for other treatment. I'm not familiar with these new drugs, but maybe you'll get feedback from someone else.

    Till then, I hope that you will have a very Merry Christmas, Linda, especially wit your daughter. Please keep us posted, especially once you start treatments.

    LUV, HUGS, PRAYERS,
    Monika

    3 more beauties to thank
    Hello Linda, Lisa and Barb
    Thank you so much for your pep talk and I will so take it to heart. After I type this I'm going to lay down again. I have xmas tree here that needs to be decorated and don't even have the stregnth to do it, but I'll find it somewhere (after my nap) lol. Your words of encouragement means so much to me and I know all of you know exactly what I"m going through which is such a comfort. But as you said Linda, when you are feeling so tired it's hard to beleive that we are going to pull back out of it isn't it? I will make sure that Meghan has a wonderful Xmas, you know what bugs me? There is no place to go for help for Christmas, I mean there should be some place cancer patients can go to get help financially. But that's a whole other subject. I will let you ladies know how my appointment went on Tuesday. I'm also feeling a lot of pain lately too, so that gets a bit scarey too. But I'm gonna pull myself togehter, promise and love to you. I'll never stop telling you ladies how much I love you so get use to it.

    Linda
  • Mawty
    Mawty Member Posts: 133
    #9
    Hi Linda,
    I read your update and am very sorry you're going through this. I have taken one of the drugs you talked about: bevacizumab. That's the Avastin that I took with carbo/taxol. Now that my insurance has changed to Blue Cross Blue Shield, they won't cover it for ovarian cancer. The drug inhibits the cancer cells (and other cells) from getting the blood supply that they love so much. It's a really good drug, and I don't believe I had that many side effects from it. I hope you're able to take it. My oncologist is just glad I was able to get 7 rounds of it before my insurance changed. She thinks it's showing great promise. So I'm glad you'll be getting it. The one thing it does do is raise blood pressure, so they'll have to monitor you closely.

    I too am concerned about your weight loss. Please take as much nourishment as you can. I'm sure that's making you exhausted. We need you around for many more Christmases.

    Blessings,

    Marty
  • Mwee
    Mwee Member Posts: 1,338
    #10
    dorion said:

    3 more beauties to thank
    Hello Linda, Lisa and Barb
    Thank you so much for your pep talk and I will so take it to heart. After I type this I'm going to lay down again. I have xmas tree here that needs to be decorated and don't even have the stregnth to do it, but I'll find it somewhere (after my nap) lol. Your words of encouragement means so much to me and I know all of you know exactly what I"m going through which is such a comfort. But as you said Linda, when you are feeling so tired it's hard to beleive that we are going to pull back out of it isn't it? I will make sure that Meghan has a wonderful Xmas, you know what bugs me? There is no place to go for help for Christmas, I mean there should be some place cancer patients can go to get help financially. But that's a whole other subject. I will let you ladies know how my appointment went on Tuesday. I'm also feeling a lot of pain lately too, so that gets a bit scarey too. But I'm gonna pull myself togehter, promise and love to you. I'll never stop telling you ladies how much I love you so get use to it.

    Linda

    Tuesday
    Dear Linda,
    I'll be waiting to hear how that Tuesday appt. went and I'm sending you all the possitive vibes that I can muster. I go in for next adventure in "surgeryland" this Thursday so...... if I don't get a chance to talk to before the holiday...... here's wishing you and your daughter a joyful and peaceful Christmas.. ((((HUGS))))
    Maria

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