October 20, 2009 at 12:40 am #31929tiapattyMember
Welcome aboard our board! I am the resident librarian here and always recommend books, this one seems helpful:
The Chemotherapy Survival Guide, by Judith McKay and Tamera Schacher (3rd edition)
PattyOctober 11, 2009 at 6:29 pm #31928lainyParticipant
Sorry to be tagging on so late but I was sure I had posted you under a different thread. At any rate a warm welcome to you and your mom. It sounds like you are on a good track and as you have probably found out already, the only thing we know about CC is that we know not much! One thing you can be sure of is getting some really good advise on this Board. I agree with Marion that if your mom tires easily there is no need for big pushes while going through this nightmare. She must do things at her comfort level. Wishing for you and your mom the very best and please keep us all posted.October 11, 2009 at 5:40 pm #31927
That’s great news AJ Carman!!!! I’m rooting for your mom. It makes me feel like there’s hope when I hear stories such as yours. I hope the outcome is the same for my mom……October 9, 2009 at 9:19 pm #31926ajcarman72Participant
Welcome Mary’s Son. I am reasonably new here and still learning the ins and outs of this cancer for my mom as well.
My mom is similar – cholangiocarcinoma with multiple spots on the liver. My mom finished up her first round of Gemcitibine for 4 weeks last week and had her first “good” CT scan since she was diagnosed in January of the past year last week. “Good” for her was no new spots and slight reduction in size for the existing spots. Given this “good” scan and the fact that she is tolerating Gemcitibine quite well, they opted for her not to take a break and to continue the weekly regimine. The first few weeks the chemo made her sick the two days after her treatment, then she felt great for the rest of week. The last two weeks have just been more nausea and not feeling great for those first two days, followed by feeling great after that. Her WBCs have also stayed in a good range.
Best of luck to your mom!October 9, 2009 at 4:05 am #31925daddysgirl-2Member
Hi Mary’s son, wanted to send my welcome along to you and your family. My dad tolerated the chemo fairly well. He had some nausea, barely noticable thinning of hair-a good thing as he was vain about his thick mane, remained as energetic as could be expected and mentally sharp. He would run a slight fever a couple of days after the treatment, but we just kept an eye on it. He wasn’t a candidate for surgery, either. His chemo treatment was purely palliative, but he looked forward to it. He enjoyed socializing.
Everyone is different, though…my dad had other health concerns as well as CC. I wish the very best for your mom, and for you.
JoleneOctober 8, 2009 at 12:41 pm #31924walkMember
I have no idea if she would be a candidate, but you might want to investigate sirspheres treatment. Mary England is the nurse for Dr. Andrew Kennedy in Cary, NC. They are most helpful. I wish you luck on your journey.
Wake Radiology Oncology
300 Ashville Avenue
Cary, NC 27518
firstname.lastname@example.orgOctober 8, 2009 at 3:55 am #31923
Wow….. I’m overwhelmed with all the advise, kind words and well wishers!! My mom is 74 and has been in good health up until the beginning of the summer when she started having some blood in her stool and some stomach problems. she went through several test such as colonoscopy, endoscopy, and even swallowed a camera that she pooed back out and they found nothing. Then her doctor ordered a MRI (I think) and they found a spot on her liver. She had a biopsy and it came back what they called adenocarcinoma. My folks live in a small town on the coast of North Carolina and her oncologist, at the beach, suggested a second opinion. She went to The Lineburger cancer center in Chapel Hill, North Carolina. That’s when we found out it was cholangiocarcinoma. For the past month, things have been going down hill. She’s weak alot, constantly runs a low grade fever, has trouble with constipation, lots of gas and bloating, no appetite. She’s lost about 25 pounds over the summer. The oncologist in Chapel hill told us it wasn’t operable and it had spread to her liver where there are several tumors. She said it basically comes down to quality of life vs. prolonging her life. It’s scares me to no end thinking that I’m going to have to watch my mom shrivel up to nothing and die. It already seems she’s a human pin cushion. They’re forever taking blood and running test. No one in our family had the guts to ask for the prognosis, but the oncologist said that this cancer isn’t curable and our goal is to just stop or slow down the tumors from growing.
I’m praying her reaction to this Gemcitabine chemo is much like Kris’s and she will regain her energy.
Thanks again for all the support!! As tears flow while writing this I feel fortunate in finding this sight. God bless you all……October 7, 2009 at 8:08 pm #31922devoncatParticipant
Welcome to the site Marys Son. Sorry you needed to find us.
Peoples reactions to chemo varies greatly. I am currently on gemcibine and cisplatin and for me it is easy peasy. Just thin hair and numbess in fingers and toes and constipation. I am on meds for sickness and as of yet, I have not been sick once. I am not tired at all. They have me on steroids which I think helps with that. Overall, my quality of life is almost exactly the same as before I went on chemo…but that is just my experience. Some people dont do as well.
Best of luck to you and your mom.
KrisOctober 7, 2009 at 5:01 pm #31921katieloumattMember
Hi Marys Son,
Welcome to the board where you will find a warm welcome from some very knowledgeable and friendly people.
Whereabouts are you? I live in England as do a few others on the board, there are people on here from all over the world with differing experiences and advice.
Wishing you lots of strength as you take the path along this journey with your Mum.
KatieOctober 7, 2009 at 1:27 pm #31920gavinModerator
Hi Mary’s Son,
Welcome to the site, although I am sorry that you have to be here. I can’t offer any specific advice about chemo but I can relate to your fears surrounding it. My dads CC was also inoperable and his doctor talked about chemo for the first time yesterday.
I hope you will stick around here, use the search function as Ron suggested and ask any and all questions.
Good luck to you and your mum and I wish you both the very best.
GavinOctober 7, 2009 at 10:12 am #31919louiseParticipant
Welcome. I agree with Ron and Marion. However, in addition to rest, Mary should continue any physical fitness program she might participate in as much as she feels able to do so. I did water aerobics. If she has not had a fitness program, it might be time to consider one. Working out helps maintain energy, keep up a good attitude, and (with the right program) also provides some social benefit. When so much of my life seemed out of my control, water aerobics was something I could control. Of course, you did not mention your Mom’s age or her condition before diagnosis.
One of the difficulties with cc is that the disease is unpredictable, and each individual is different, so the medicines/chemicals are also unpredictable. Even if we could tell you what to expect, we would be wrong some of the time. I was rarely warned of the side effects I experienced. In fact, I often experienced the opposite of what I was prepared for.
My mom was also diagnosed at the age of 86. She chose not to pursue active treatment of any kind and her oncologist didn’t think she would last a year. She lived almost 3 after that. Her primary weapon in the battle was prayer.
As for yourself, read all you can but don’t believe the stats. Encourage your Mom to make as many decisions as she is comfortable with, and support her in her decisions as much as you can. It is a good idea to have a notebook for all the questions that come up so you can ask the doctors at regular visits and write down answers. There are so many questions that if we don’t write them down, we may forget to ask and if we don’t write down the answers, we may not remember.
There are lots of caring people who visit here, so come back as often as you want. We use this forum for questions, sharing experiences, celebrating successes, letting off steam, venting, whatever is needed, and we give and receive feedback.
I’m glad you found us, but I wish you had not needed to.
LouiseOctober 7, 2009 at 4:34 am #31918marionsModerator
Hello Mary’s son and a warm welcome to you. I was scared also when chemotherapy was suggested for my husband so, I very much understand you feeling this way. But, within the last few years many drugs have been introduced making it much easier on the patient undergoing these treatments. It may very well help your Mom too. At times, fatigue appears to be the biggest issue and if your Mom can get plenty of rest then this may not be a problem at all. The doctor will watch your Mom closely and he will give her an instruction sheet listing all the side effects possible with this chemotherapy.October 7, 2009 at 4:07 am #31917ron-smithMember
Welcome to our small company, but, as everyone will tell you, it is not one any of us wishes to join. It is not an easy path which your mother is on and what she will need is good family and professional support. You will find in many cases that the professionals will learn as they go on. Try not to think too badly of this since it is not a well known cancer with established procedures.
As for immediate advise, it is difficult to advise since you do not give much information. Try to make sure that her current hospital has relevant experience in treating this cancer, Don’t be affraid to ask for further opinions from other surgons. Be realistic about her age and general health, Chemotherapy is a poison that you are feeding into the body, in the hope of killing a worse poison. It very rarely has no bad effect. It is a balaning act, not a cure. It may help prolong her life and make her more comfortable. It may be you cannot ask for much more than this.
Gemcitabine is regarded as one of the chemos with fewer side-effects and it has been shown to have some positive effects, but it can still make her feel nauseaus and tired. That is when the family support is important.
Try the Search facility at the top of the page, enter Gemcitabine in the Search and you should find personal experiences of the effects of using Gemcitabine being described.
Whatever happens – good luck to you and your Mom.
All the very best
RonOctober 7, 2009 at 2:01 am #2750
My Mom was diagnosed with cholangiocarcinoma the first of September and it had spread to her liver where there are several tumors. The doctors are saying it’s not operable and want to start chemo with Gemcitabine 3 weeks on and 1 week off. I’m scared for her….. What can we expect when she starts these treatments?
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