1

(80 replies, posted in General Discussion)

Hi Rick,

I was diagnosed in April 2010 and was having a lot of pain due to the ascites and enlarged liver. I started on Gemzar/Cisplatin and after 2-3 weeks I definitely felt an improvement and decrease in my bloated abdomen. After 6 weeks I had lost most of the ascites and fit back into my clothing. So for me the regimen was working well and I feel a lot better.

I just booked a cruise with my family for April next year to go to the Bahamas including Atlantis. I do hope you are able to enjoy the trip as it looks beautiful -- for me, sometimes changing my location even for a long weekend helps with my rollercoaster of emotions. Also, having a break from the constant visists to the doctor's office and blood draws helps too.

I wish you all the best and hope you enjoy Atlantis!!

Jane

2

(10 replies, posted in Introductions!)

Dear Ironbark,

I'm sorry to hear about your dad and all that you're trying to handle. I was diagnosed in April 2010 with CC and it definitely is a rollercoaster of emotions. Its hard to see someone you love perfectly fit and then get very sick so quickly -- unfortunately this disease does that.

I go through moments of being very positive and enjoying every moment I have with my family to periods of crying because this seems so surreal at times.

You are not alone and I gain much support from reading other's posts on this website so I hope you find the strength and support here too.

As Tom noted above, "taking it one day at a time" -- that's all we know is the present and I've been trying to make the most of it with my family.

Jane

3

(10 replies, posted in General Discussion)

When I was diagnosed in April my oncologist recommended I have a port implanted -- it was optional. Its the best decision I made. I know a lot is going on when you first get diagnosed but its one less thing that I have to worry about with treatment. I have a Bard Power Port, I don't have to do anything to maintain it (the first couple of weeks until its healed over it was a pain showering and protecting it). But I get all my blood drawn from the port and chemo infused there. I never felt any discomfort with chemo or had any issues with the nurses 'trying to find a vein' which could become problematic as you receive more treatment.

When I first started treatment all my chemo could have gone into my arms but about 2 months ago I needed to switch chemo to a 48 hour continuous infusion which could not be done unless I had the port. So it was easy for me to switch to the new therapy.

Whether you get a port or not, its something that can be implanted at any point, so you don't need to rush into it. It's all a matter of preference.

Jane

Dear vzimarino,

Thanks for sharing your brother's journey. That is great news that his pain has gone away, I'll keep him in my thoughts on Wednesday when he goes for his scan. I sometimes think all the tests (CT scan, etc) are just horrible, so I hope all goes well for him.

Regards,

Jane

Hi gissy,

Is your husband on oxaliplatin plus Gemzar? Oxaliplatin can cause the unusual sensitivity to cold on the hands and feet. I just started oxaliplatin yesterday but I haven't been sensitive to cold yet, but my doctor said to avoid any cold liquid and getting things out of the freezer.

As for sweating for me this has been a common occurrence because of the disease. I can't get the temperature right I'm either cold or hot especially at night time, I've turned the air conditioning cooler and put my ceiling fan on while my husband has 5 blankets on him.

I hope this helps.

Jane

6

(9 replies, posted in Introductions!)

Hi dlbonder,

I empathize with your strugle and this disease has so many ups and downs and only you can know what is right for you.

I was diagnosed in April 2010 with Stage 4 cc. I have 2 children 9 and 11 years old. I too don't want them to see me sick all the time.

I started chemo with gemcitabine/cisplatin for 2 months. After the first 3 cycles I had definite improvement to my pain and abdominal discomfort. I went for a CT scan in July thinking I was feeling so well that it was working. It was working on the liver tumors but I had metases to my spine.

I just started my 2nd treatment regimen yesterday with 5-FU/oxaliplatin after delaying my treatment because of low platelets. Today I'm feeling Ok but I hate being hooked up to the 44 hour continuous pump with 5-FU.

In my situation I am on very little pain medicine right now and sleep a lot, but there are many more days that I feel almost normal and can spend time with my family enjoying them and trying to teach them everything that I know before my time is up. I just booked a 7-day cruise to the Bahamas for April 2011 for me and my family -- this disease is not stopping us from planning some great times together. I don't know how I will be physically from day to day, but my life isn't over yet and I need to be there and present for my children so that they have great memories.

Doctors can quote statistics but there is no exact time they can give me or you and you need to decide what is right for you. And that decision for me does change from day to week to month and that's OK!

I wish you the best!

Jane

Thanks everyone for all the support!

I started my new chemo regimen yesterday with 5-FU/oxaliplatin at a reduced dose because my platelet level is still low. My doctor is looking into adding Avastin but needs to see if insurance will cover. From what I've read on Avastin there's minimal improvement in survival for colorectal patients (no data for cholangiocarcinoma), so I'm not too concerned if I don't add that to my current regimen.

The thought is to add the Avastin because my platelet counts have been sluggish to improve so adding Avastin would add chemotherapeutic effects without impacting my platelets.

Has anyone tried Avastin for cc?

Thanks again, it really helps reading about everyone and their inspirational stories.

Jane

Hello Caregiver,

I was diagnosed with stage 4 cc in April 2010. After several cycles of gemcitabine/cisplatin. In July 2010 my PET and CT scans showed bone metases to the spine, hips, and left leg. My doctor at Johns Hopkins recommends I start on 5-FU/Leucovorin plus oxaliplatin therapy. I haven't started that regimen yet as my platelets have been too low but I hope to begin in the next couple of weeks.

I don't have any bone pain right now. I am feeling pretty good with only some abdominal discomfort and tiredness. I do need to take a nap in the afternoon and am very tired at night.

I too have lost about 40 pounds and was very concerned. Now that I have been on a break from chemo because of my platelets my apetite is back and I love eating everything that the cisplatin took away.

But I went back to work a few weeks ago. I am very fortunate as I work from home and do medical writing so it has kept me busy and a good distraction as my two young children (9 and 11) are back in school as well as my husband who is finishing up his teaching degree. I use to travel extensively for work but my employer has been very supportive and is working with my schedule and the multitude of appointments. In April I didn't even know that I would feel good enough to work again.

I started taking a yoga class once a week, its specifically for cancer patients. It really was good to be in a supportive group. I've never done yoga before but it really focused on breathing and feeling your body and accepting the moment. It really helped reduce a lot of the stress the appointments and therapy have taken their toll on me.

I hope my story helps.

Hi,

Thank you to all of you who have posted. I have been reading the posts and gaining inspiration from all of you.

I was diagnosed in April 2010 with stage 4 CC and surgery was not an option due to the widespread metastatic disease in my liver. I went through 6 cycles of Gemcitabine and Cisplatin and tolerated it very well and had much symptom improvement (decreased abdominal bloating and pain). Anticipating good results, in July I had a PET scan and CT scan which confirmed bone metastases. So once again my doctors have told me how unusual this disease is and now again to hear how bone mets is unusual. I also had a bone CT to confirm areas of disease in my spine. I am very fortunate as I don't feel any increased pain or discomfort.

I am playing the waiting game now. My platelets have not recovered well from the gemcitabine therapy so we are waiting for them to go back up before I start my 2nd line therapy of 5-FU/Leucovorin plus oxaliplatin.

I am being seen by a wonderful doctor at Johns Hopkins Hospital who has helped guide us through this process. Because of the nature of my disease a clinical trial is not an option. Plus I have decided not to pursue a clinical trial because I want to be with my family as much as I can. After all these months with multiple appointments I'm happy to be feeling well and enjoying my family.

I have an unbelievably supportive family that includes my husband, a son who is 11 years old, and a daughter who is 9 years old. They have been wonderful and I love them so much.

I went to my first yoga class specifically for cancer patients this week. I still cry when I discuss my disease with others. But the class was very supportive and understanding and relaxing! I am thankful to be well enough to attend and feel my body again.

I have learned many things with this disease but one is to seek out supportive doctors. Don't listen to the first oncologist who never looks at you in the eye but tells you you only have a couple of years to live. No one knows how this disease will progress and everyone is unique. Everyone is beautiful and time is irrelevant.

I send my hugs and support to everyone here!