July 19, 2010 at 4:09 am #39903jennifersMember
Glad you found some comfort in the site — it has helped me immensely in the last 6 months – I would have gone crazy without the chance to vent my feelings to people who completely understand once in a while. Funny that you were born in Calgary as well – are you still in the area?
You and your family are in my thoughts…
JenJuly 17, 2010 at 4:12 am #39902devastateddaughterSpectator
Hey everyone- just wanted to say HUGE thank you for all your nice welcomes and words of wisdom. You all seem like some of the nicest people I have ever met…I must say that I am soo happy to have found you all…as I must admit, I needed this.
Lainy- You are so nice and you have the perfect things to say…thank you!
JenniferS-WOW!! How similar our stories… I feel you… Congratulations on your daughter and wishing you all the best for your dad. PS: I was born in Calgary, another similarity!!
Linda Z- You make an interesting point about the fact that she’s reacted well to the chemo so why change…we asked the same question and her oncologist said they never repeat the same chem after the 6 cycles?? Is that true? I’m guessing no from the sounds of your question? I will have to ask again I guess (this site has taught me a thing or 2 the past few days). Maybe her oncologist wants to change the chemo cause first it was unknown primary and now they think it’s CC?? (not sure, just guessing, but i shall ask) Linda I wish you all the best with your new chemo and hope it works wonders for you!! Best of luck and let me know how it goes please.
Mark S- So happy to hear you were on the same chemo my mom will be starting and that it worked for you…hope it does for my mom too. I wish you continued success with your new chemo and thank you for your kind words.
Katieloumatt- Thank you so much for your sweet wishes and so sorry to hear about your father…
Kimmie- I hear you on that lurking this website, I’ve been doing just that the past few days, there is so much information, I’m addicted to this site. Hope all turns out well for your mom. And yes, I have a brother younger than me but it’s hard for us to talk about stuff, he’s ultra positive and I am positive but trying to be “realistically optimistic” and I don’t want to worry him unnecessarily with my 10000 questions running through my mind daily.
Lalupes- THank you for your hug!! I gave it to my mom and told her about everyone on this site and how nice you all are and she gives everyone on here a big hug and lots of kisses.
Gavin/Marions- Thank you for your nice welcome!
LAnce21- Hope your mom’s white blood cells go back up so she can continue that chemo that’s making her ca199 go down.
Thank you all, sorry about the long post but wanted to personally thank each and everyone of you!!
Thank you and best wishes to all, Emily xxxJuly 15, 2010 at 5:12 pm #39901lance21Spectator
I just wanted to let you know that I understand how difficult things are for you and your family right now, as my mom was also recently diagnosed. I am so sorry for what you, and everyone on this site, is going through.
Having said that, you have to try to stay as positive as you can. This site has been absolutely wonderful, and makes me feel like at least my family and I can be empowered with knowledge, not to mention the amazing support of so many fantastic people.
My mom is currently doing the gemzar/cisplatin combination, as that’s what her doctor recommended. She has completed 4 cycles, and her CA 19-9 levels have come way down. However, her white blood cell count is too low for another cycle right now, so she’s taking a bit of a break.
Hopefully you are finding this site as helpful as I am. Best wishes to you and your family.
Lance21July 15, 2010 at 5:51 am #39900marionsModerator
Hello….So much information has been already given to you by the others however, I would also like to welcome you to our site. Please, stay with us.
MarionJuly 14, 2010 at 4:30 pm #39899gavinModerator
Welcome to the site, although I am sorry that you had to find us all. I can’t help you with my dads experiences with chemo as he never had it, he had PDT as his treatment but I just wanted to join in with the others in welcoming you here. As you can see, everyone here is really friendly and will share their experiences and information with you. So I hope that you keep coming back and you will get a load of support from us all. And please feel free to ask a load of questions if you have them.
Best wishes to you and your mum,
GavinJuly 14, 2010 at 3:39 pm #39898lalupesSpectator
I’d like to join the others in welcoming you here. This site has been a life/sanity saver for me & I’m able to take the information I learn here & share it with my sister in the most appropriate way.
Give your mum a big hug from me (& have one for yourself, too).
JuliaJuly 14, 2010 at 12:40 pm #39897kimmieSpectator
Hi there! My experience is somewhat similar to yours, but different treatment. My mother, now 63 years old, was diagnosed with a large liver tumor (8cm x 6cm x 10cm) in May ’09, which had not spread anyhere else. She had the liver resection in July where they said they got “clean margins,” chemo started in August (gemcitabine and cisplatin) for 6 cycles to clean up any microscopic cells still floating around. She finished up chemo last December, and her scan showed no evidence of cancer.
We were happy for the first 6 months of 2010, March bloodwork was great, even the CA 19-9 marker. June bloodwork showed elevated CA 19-9, and the CT scan confirmed several smaller tumors throughout both lobes of her liver. Chest x-ray was clear. So our plan of attack now is 2-3 cycles of gemcitabine, check to see if the tumors responded at all, then do TheraSphere.
This website is amazing, and I spend a lot more time lurking then posting. Just reading the boards, searching on a specific question… knowledge is power. I have learned to accept that, because CC is so rare, I do not put a whole lot of faith in the statistics and estimates. Every person is different and may respond differently to a treatment. We heard all those numbers last May, and my Mom is still here! It was tough hearing the surgeon say 6 months with this recurrence, but we’ve since put a palliative treatment plan in place and I do not believe in his 6 month “sentence” anymore. There are some uplifting stories in the “Good News/What’s Working” section.
It’s hard having your mother go through this, I know. We are an extremely close family. My Mom has 3 children and 5 grandchildren, ages 4-11, plus my Dad (although he has vascular dementia and can’t help a whole lot). Do you have siblings? I couldn’t go through this alone, my sister and I rely heavily on each other, talking at least half a dozen times a day. It helps too that she used to be an oncology nurse and is now a hospice nurse.
Hang in there and keep coming here for support and learning – these people are amazing!!!
KimJuly 14, 2010 at 6:48 am #39896katieloumattMember
Firstly could I join the others in welcoming you to our fabulous support network, I’m sorry you have had cause to find us but hopefully you will find all the information on here.
I cannot comment on the chemo regime your Mum is having, ny Dad never had chemo, he went straaight to a liver resection which sadly was unsuccessful.
Just to wish you strength on your journey with your darling Mum, We are here for you whenever, there is always someone around to ask questions, the search engine at the top of the page is a wealth of information.
Thinking of you,
KatieJuly 14, 2010 at 3:20 am #39892mark-sSpectator
Hello and welcome to the site, so sorry you had to find us but glad you did under the circumstances. Everyone I’ve experienced on the site is wonderful – very caring and helpful.
I am 48 years old and was diagnosed in July 2009 and started gemcitabine and oxaliplatin. It worked well and shrunk the primary tumor slightly. I had to discontinue the oxaliplatin in February 2010 as it will cause peripheral neuropathy in the hands and feet after 4-6 months. If one doesn’t d/c it, the neuropathy can become permanent. Mine has improved and my oncologists warned me that it may take a year to completely go away.
I am still on gemcitabine and now capecitabine (Xeloda), an oral form of 5-FU. I have tolerated this well so far.
Tell your mother to hang in there and keep fighting. I know how tough this battle can be. Attitude makes a huge difference and makes the journey easier. Hang in there and lean on others at this site for assistance and support!
MarkJuly 14, 2010 at 3:16 am #39893linda-zSpectator
So sorry for you to have to go through this with your Mom, but you are in a great place to get information to help fight this.
I am 53 years old, and was diagnosed in March 2009. I will be starting a new chemo. treatment on Thurs. You will find as you search many of the posts here, that there just isn’t one chemo or treatment that is better than another. Everyone reacts differently to each treatment. I was on Gemcitabine / Cisplatin first and then Xeloda / Oxaliplatin. Many have responded to one more than the other, but it doesn’t make one better than the other (unless it works for your Mom!).
You found us here, and that is a great thing. It’s terrific that your Mom did well on the chemo. and had some significant success with it. If there was success with that particular chemo, why would they be trying another type? Also, have you tried for a second opinion yet? Sometimes, it’s not necessarily that one doctor is wrong, but a different mind looking at things can help with another approach to this cancer.
Best wishes for continued success with the treatment. Keep coming back here for support and to share your story.
LindaJuly 14, 2010 at 3:03 am #39894jennifersMember
Hello – I do have a somewhat similar story to yours. Dad was diagnosed a month before your Mom (January 20th) and not able to have surgery. He is doing chemo, and has a scan tomorrow that will tell us if the chemo is helping, or if the cancer is spreading. I also had a baby this last year (she is 10 months old), and my Dad is also a very proud first time Grandpa. I can completely understand how you feel about the possibility losing a parent, and knowing your baby won’t grow knowing them… it seems we are going through very similar emotions!!
I know how hard it is, but try to enjoy every second you have with your Mom… time is so very precious and I am doing my best to remember that. I have my moments when my world just crumbles around me, as I’m sure most on this site do, but I have realized that every second I have is an incredible gift, a gift many people are never given…
Finding this site is a great thing for you – you will find SO many caring, wonderful people who will share stories and give you great advice….
Thinking of you and your Mom tonight….
JenJuly 14, 2010 at 2:44 am #39895lainySpectator
Dear Daughter, welcome to our fabulous family, but so sorry you had to find us.
I can’t tell you too much about chemo as my husband had radiation and cyber knife but I think it is a very good thing that your mom has responded so well to her chemo. We always like to say here that no one was born with an expiration date on the bottom of their feet. Our other saying is that we all try to remain realistically optimistic. And I know from experience that Grandma’s best RX is a grandchild! Good luck on everything and please keep us posted.July 14, 2010 at 2:11 am #3770devastateddaughterSpectator
I am new to this site and am soo happy to have found this site. My mom has just recently (Feb 8, 2010) been diagnosed with cancer. At first, they said it was from an unknown primary and now, they are leaning towards cholangiocarcinoma.
The cancer has spread to her liver, lungs and abdomen. I am very depressed she is only 54 years old and the oncologist said that he gives her a few months if the chemotherapy does not work and maybe a year if it does work…Basically, both scenarios suck it’s just that one is better than the other, i guess.
He said that it is a very aggressive cancer and they started chemotherapy Feb 19, 2010. She was given taxol/carboplatine. She has just finished all 6 treatments. The doctor said her body responded well and she tolerated it well but could not say anything more…after the pet scan done last week, he says that one of the tumors in the liver has decreased significantly in size and the disease has not spread (which is good).
She is now on a break from chemo to give her body a chance to recuperate and is starting chemo again in august (probably). She will be getting gemcitabine/oxaliplatine. I was wondering if this is a good chemo for CC?? I read a lot about gemcitabine/cysplatine but nothing about this one…does anyone know the difference? which is better??
I am really really devastated and was wondering if anyone could help me or share a similar experience…are there any happy endings? Is there anything more we can do?
PS: I just had a baby boy last year and my mom is a first time grandma and soo happy and soo proud and i just don’t want to imagine life without her…she is my world…we are so close….i am hurting and miserable and sooo depressed from the day i found out…..oh and i gained 15 pounds too
Thank you for listening and i am so happy to have found what seems to be such a nice site!!!
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