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(15 replies, posted in General Discussion)

Thank you so much for your condolences and words of support. There are so many amazing people on this board that I just want to thank you for being here for each other through this very tough journey. Lainey I took the poem with me and it was very comforting. Happy New Year and My prayers will be with you.
Suz

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(15 replies, posted in General Discussion)

Today I will be burying my sweet precious sister. She lived for 22 months after being diagnosed. What a long and difficult journey has been. My heart is broken. You will all be in my prayers .
Suz

So sorry for what your family is going through. I really understand what you're going through. My precious sister is in Hospice now and only 68 years old. She had a great life until this cancer took it away from her. You do have to be so strong to get through this. I just can't imagine life without my sister.
Praying for peace for your Mom and your family

Suz

Thank you for your kind support. My sister is comfortable and in no pain but the drugs make her so sleepy that my heart breaks when I look at her. It's like seeing a monster devour her. It's so sad.

It's been a while since I've posted but follow you all regularly. Always praying for each and every one of you. The Dr estimated my sister would be here about a year or less after diagnoses of ICC  Stage 4 but it's been 18months now although the last 4 months have been so hard for her as her blood work has not allowed her to have much chemo. The Tumors are growing rapidly and more pain involved so we have Hospice now working to control pain and nausea. These drugs really make the personality change and the depression is really bad for her. She is getting pain relief but the nausea and constipation the drug and the disease causes is hard to deal with. Such a very sad thing to watch as she's losing weight and just looks so sick now. I know we are both so tired now.fighting this cancer is exhausting in every way. Good luck to everyone and you always in my prayers. Trying to stay strong!

Suz

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(25 replies, posted in General Discussion)

Good luck Kris!

7

(2 replies, posted in Chemotherapy)

My sister has been on chemo Gem Cis for 16 months. About half way through that time period they had to reduce from 2 weeks on one week off, to once every 3 weeks because of low platelets. She did very well but discovered in June that she was resistant to chemo and cancer growing back and some new Tumors. So for my sister it was about 14 months. Now they are going to stop the Cisplatin because so hard on body to Gemzar and Xeloda if she can tolerate to try to slow the growth if possible.
Good luck to you! Hope that was helpful.
Suz

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(26 replies, posted in Introductions!)

Good luck this week Susan. I'm in this CC battle with my sister. It's so frustrating to go through all the ups and downs of this horrible disease. I pray for all the best for you guys

Suz

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(11 replies, posted in General Discussion)

Rena, so sorry for the loss of your Dad. My thoughts and prayers are with you and family.
Suz

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(33 replies, posted in Introductions!)

Thank you so much for your kind words and prayers. My Sis seems to very suddenly be getting sicker. The cancer seems to be growing very fast . After months with no pain she now has to take a narcotic for the returning pain in her side. And still has not been able to increase chemo because of bloodwork. I know the Dr is just trying to help her feel better with the chemo but I would say we are coming to the end of the this fight soon. Watching her fear and emotional and physical suffering is so hard. We are both so scared for what's coming. Thanks everyone for being here for all of us. So many broken hearts yet so much love and hope. You are all an inspiration to me.
Suz

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(33 replies, posted in Introductions!)

My sister was supposed to go back on a more aggressive schedule of Gem Cis since the Tumors are growing but today will be her third attempt to get chemo as the last 2 weeks she couldn't get it because of her platelets. She is frightened and devastated. The tumor in her liver area is starting to be very uncomfortable. I am so hoping she can have her chemo today. She's starting to feel weaker too. How much more chemo can a body take I wonder. And if the Tumors are resistant then it seems like pumping in a gallon of chemo won't stop the monster. The sadness is so overwhelming sometimes . I see the fear and sadness in my sisters eyes everyday and I wish there was something to do. Thanks for all your love and kindness here.
Suz

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(167 replies, posted in General Discussion)

Dear Pam, may your lovely daughter rest in peace. All my prayers for you and family.

Suz

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(167 replies, posted in General Discussion)

Praying for Lauren and your family

Suz

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(33 replies, posted in Introductions!)

Thanks so much for caring!! It makes a difference!

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(33 replies, posted in Introductions!)

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

Hi Carrie, I live in Roswell Ga. So I am very close to you if you ever want to talk. My sister has been on Gem/ Cis combo for 1 year. She has tolerated quite well. Fatigue is her worst symptom but she manages that. Good tumor shrinkage with this combo. Her blood work is stable now but has had to have transfusions along the way. Don't let that worry you when and if that happens to your husband. You just handle the situation then move forward. We treat this as a chronic disease. I know this must be so hard for you especially when you have to have a happy face for your children. Please know that your family is in my prayers and you'll feel a lot better now that you have a plan.
Suz

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(33 replies, posted in Introductions!)

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

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(13 replies, posted in Introductions!)

Hi Martha
So sorry you and your family are going through such a difficult time. My sister ha s stage 4 ICC and is also be treated at Atlanta Cancer Care. She has been on Chemo for 14 months and doing quite well. Good tumor shrinkage and she feels pretty good after about 4 days after chemo. She goes every 3 weeks now. She's not a candidate for surgery. We are very pleased with her care at ACC. Dr Steis has experience with rare cancers. All the best to you and your husband. I love WDW. Hope you guys get to go soon!!! And have some fun and laugh!!!

Suz

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(12 replies, posted in Members' Cafe)

Happy Easter!! To all have a wonderful Sunday! I thank God for you and send prayers and good wishes to all!!

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(122 replies, posted in General Discussion)

The best news ever!! Keeping her in my prayers!!!  Suz

Pam, my prayers are with Lauren and your family today that surgery will go very well and that Lauren will have a speedy recovery.

Dear Exoaria,  I am a Christian too. And I will keep you and your mother in my prayers. My sister was told 8 months but its been 13 months now  and her blood work is very good and getting maintenance chemo now every 3 weeks and her Onc. Is amazed. We are now treating her ICC as a chronic illness. Don't ever give up hope. I do believe it is very helpful to have someone to talk to and be on this walk with you and your Mom. A trusted person from church to pray with is very comforting. Come back here often and get support.

Love and prayers,
Suz

23

(33 replies, posted in Introductions!)

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

Gerardo, sending you my prayers as well! You are the sweetest couple . And so brave. Suz

25

(33 replies, posted in Introductions!)

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