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  • June 6, 2013 at 7:05 pm #68145
    Randi
    Spectator

    Suz,

    So sorry to hear about your sister’s setback. I hope that the new regime of chemo keeps things at bay and that your sister is comfortable and able to live her life with joy.

    We are always here for you!

    Hugs,
    -Randi-

    June 6, 2013 at 5:42 pm #68144
    marions
    Moderator

    Suz…..I am so sorry to hear of the response resistance to treatment. My heart goes out to you and your dear sister. If your sister can tolerate the increased regimen and her quality of life is acceptable, then there still is hope for her keeping things at bay. That is what I wish for.
    Hugs,
    Marion

    June 6, 2013 at 4:57 pm #68143
    suz
    Member

    Hi everyone, we found out today that my sisters regimen of Gem Cis not working anymore.Tumors are growing and some fluid in abdomen. So the cancer has become resistant. He’s going to increase her dose back to 2 weeks on and 1 week off chemo for 9 weeks then repeat Cat scan. We are so sad and devastated .i read the boards every day and think about you all everyday. And you’re in my prayers. Sometimes I feel so tired. She is such a sweet sister.thanks for being here! SUZ

    May 18, 2013 at 10:02 am #68141
    suz
    Member

    Hi willow,
    My sister is still on Gem Cis every 3 weeks. The Dr calls it maintenance chemo. She gets the full dose but less often. Did 2 weeks on 1 week off for 6 months. So far she is doing well.at this point this is the only treatment available to her. Has mets in lungs , momentum,ovary, and liver. She has had good shrinkage and no pain. Fatigue is her worst side effect from chemo. Next CAT scan June 4 so keeping our fingers crossed. Used to have low platelets but her blood work is pretty good now. RBC stable and platelets haven’t been low in months. She’s had some transfusions but has been about 6 months since she’s needed one . Gets Neulasta shot after each treatment for white count. I am so sorry you and your sis and her family have to go through this. You will all be in my prayers
    Suz

    May 17, 2013 at 4:18 pm #68142
    willow
    Spectator

    Dear Suz ,
    May I ask what kind of chemo up it sister is doing for maintenance? Still Gem Cis? I’ve heard it can work for a while and then not (cancer mutates and develops resistance) so they like to switch up chemo types. Also, how does she manage side effects? Has she had problems with low platelet counts?
    While my sister was trying to get gem Cis on booard last fall, they kept delaying g her infusions due to slammed w c and esp platelet counts. Meanwhile can ER went from stage 3 to 4. They did y90 radioembo which targeted tumors in liver but meanwhile those seed cells had spread to omentum, abdominal aortic lymph nodes and every love of her lungs. We are devastated though she tries just not to think about it as her coping mechanism. Essentially she had no chemo from mid Nov till mid April when they put her on Xeloda pills (supposedly milder on platets). So frustrated because she has a little boy only 9 (3rd grade). Amazing thing is that aside from fatigue, and low back ache, she has very few symptoms of this cancer. I feel like we are holding our breath!
    Well, as a fellow sister of one with stage 4 ICC Im so glad you posted. I’m really glad your sister was able to tolerate long term gem Cis with some success (slowing and shrinking this monster is name of the game!)
    God bless you. Willow

    February 7, 2013 at 1:22 pm #68140
    suz
    Member

    Hi everyone, just wanted to give an update on my sister. She has been on the every 3 week maintenance dose of chemo since sept. after 6 months on Gem- Cis 2 weeks on 1 week off. Well the Onc. told us that her CA 19-9 is rising each month now. Went from 19 to 26. Still within normal limits but definitely on the move. She will have CAT scan on Feb. 18 to see what’s happening in there. He mentioned if cancer growing would have to increase Chemo back to more frequent schedule. I wonder how effective chemo really is once the tumors start growing. Anyone have that experience? You are all in my thoughts and prayers every day!! Suz

    January 9, 2013 at 5:00 pm #68139
    pamela
    Spectator

    Hi Suz,

    I am glad you decided to take the plunge and join in the conversations! We are always happy to have new people, but so terribly sorry they are affected by this cancer in one way or another. Your sister sounds like a real fighter. My daughter has this cancer and she is as well. She continues to live her life to the fullest and not let things get her down. She just got engaged on Christmas Day and is going on a trip to Mexico next week! She rests on the bad days and lives it up on the good days!! Shrinkage has become one of our very favorite words!! I wish you and your sister all the best. Take care and hope to hear from you again real soon.

    Love,
    -Pam

    January 9, 2013 at 3:11 pm #68138
    deane
    Spectator

    Dear Suz….what great news about your sister’s CT! The roller coaster is just that, tho it sounds like she is in the lead car!

    What a wonderful bllessing you both have to be able to be together right now-prayers for you both as she approache her Feb scan.

    Deane

    January 9, 2013 at 3:09 pm #68137
    deane
    Spectator

    Dear Suz….what great news about your sister’s CT! The roller coaster is just that, tho it sounds like she is in the lead car!

    What a wonderful bllessing you both have to be able to be together right now-prayers for you both as she approache her Feb scan.

    Deane

    January 9, 2013 at 3:04 pm #68136
    lainy
    Spectator

    Hi Suz, good work little Grasshopper, you have already learned that “shrinkage” is one of our favorite words! And yes, keep taking it day by day and you will go far! That is the best we can do plus having a wonderful attitude helps a whole lot too. We will be looking forward to February’s Scan to be a good one too. One other thing is to try and be very strong and it already sounds like you are there!

    January 9, 2013 at 2:28 pm #68135
    marions
    Moderator

    Suz….we love, love, love, the word shrinkage. That is fantastic. No reason to believe that the February scan won’t be equally as great.
    Hugs,
    Marion

    January 9, 2013 at 2:11 pm #68134
    willow
    Spectator

    Suz,
    You are not alone in your feelings. It is such an awful thing to watch a loved one go through. I am very happy that your sister is stable now with “maintenance chemo”!!

    January 9, 2013 at 10:22 am #68133
    suz
    Member

    Hi Marion. Yes my sister has had 1 CAT scan since reduced regimen of chemo and she did have some more shrinkage of tumors. The Dr said some of them looked dead. So the next scan will be in February sometime. Thanks for caring . It really helps to connect with others who know just how you feel! It’s so hard to watch someone you love have to deal with such an awful diagnosis and not knowing when it will be back with a vengeance . But for today all is well!!! Suz

    January 9, 2013 at 2:32 am #68132
    marions
    Moderator

    Thanks, Suz, for explaining the details of your sister’s treatment. Has she had a CT scan with the current regimen that being once every three weeks? Sisters are so special and it becomes even more so evident when illnesses strike. She must feel so good having you by her side.
    Hugs,
    Marion

    January 9, 2013 at 2:17 am #68131
    suz
    Member

    Thank you for your replys! Just a little more info on my sister.She is 67 years old. Started Gem Cis 2weeks on then one week off for about 6 months. Considerable shrinkage of most tumors. Since Sept has been on what the Dr calls a maintenance dose of once every 3 weeks. She gets the same dosage of each medicine as before. The onc. said she would get a CAT scan every 3-4 months and he hoped the tumors would be kept at bay. Eventually they would start to grow back. She also gets a shot of Neulasta after each chemo. She is a fighter. Best wishes to all on this board. I feel like I know you all . Been such a wealth of info for me for almost a year now. Suz

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