Topic: Hello

I have been following this board since the day my sister was diagnosed with ICC stage 4 last February. She has mets to liver,lungs,abdominal cavity,ovary. She has had Gem-Cis chemo since then. She is now on a reduced schedule of treatments for maintenance and doing remarkably well. The Dr told us maybe she would live a year from diagnosis and I think he is amazed at her good progress. My sis moved in with me when she got sick and I know how this roller coaster ride is with this disease. The good days are good but the bad days are so hard watching someone you love suffer through this cancer. Thanks for all the wonderful support here. Hope this New Year brings us all good health and happiness. Thanks for being here! Suz

Re: Hello

Dear Suz, welcome to our remarkable family although sorry you had to find us. Good, good for your Sister, she is one of our great warriors. Where is Sis being treated and have you ever sought out a 2nd opinion as we are big believers in that. My favorite stories are those of family beating the odds! Now that  you have made the plunge here, please don't be a stranger and we do love updates on our courageous ones! You know from reading the Board that we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

Suz....I would like to follow Lainy and welcome you to our site.  Thanks for joining in and sharing your story with us. Your sister's response to the reduced dosage appears to be working well and that in itself is fantastic news.  I am wondering, dear Suz, as to what her current regimen consists of? Is your sister receiving half of the normal administration of Gem/Cis or, is she receiving treatments less often? 
Thanks again for becoming a member on our site.  We are in this together -  all the way.  I wish for continued success.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

Hi Suz,

Welcome to the site. Sorry that you had to find us all and I'm sorry also to hear about your sister. But I am glad that you have been following the site since your sisters diagnosis, and I am also very glad that you have no joined us all here. I hope that you will post here as there is a ton of support and help for you here, always.

Yes the good days and the bad days, we can all so relate to how that feels. Glad to hear that your sister has responded well to the gem cis and it sounds like she is doing good right now. Long may that continue please!

Please know that we are all here for you. Keep coming back and let us know how your sister gets on. And should you feel like shouting or venting or anything like that then go ahead and do so as well! Plenty of ears here to listen to you who know how you feel and what you are going through!

My best wishes to you and your sister,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hello

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

Re: Hello

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

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

Re: Hello

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"!!

Willow

Re: Hello

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

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

Re: Hello

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

Re: Hello

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

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hello

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

Re: Hello

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

Willow

Re: Hello

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

Re: Hello

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

Re: Hello

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

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-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Hello

Dear Suz,

I am very sorry to hear about how the chemo has gone for your sister so far. I know that this will have come as a big blow to you both. But please do not give up hope at this point. My fingers are crossed for your sister on her new dose and a load of positive thoughts are coming your way as well. Please keep us updated on how your sister gets on with the new treatment and remember that we are here for you as well.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hello

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

Re: Hello

Dear Suz, I am so very sorry to hear about your Sister's report. I have everything crossed in hopes for a turn around after the new cocktail is started. Thankful that you are able to have this option. Wishing you all the best and looking forward to a much better report. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

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

Re: Hello

I hope your sister is able to get chemo today. It is such a difficult feeling as a caregiver when you hear that chemo needs to be delayed. I will be thinking of both of you today and wishing for the best.

Carl

Re: Hello

Dear Suz, sending all the best today for your Sister. Guess, me being me, would ask the ONC is this plan working? What are we hoping to get out of it and if not  what are we looking at. Is the ONC giving her anything for her discomfort? Sending all the best ever!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.