Topic: new to site, looking for support

I was diagnosed with stage 4 cholangiocarcinoma on March 4, 2013. I have been getting treated with Gemcitabine and cisplatin (3 times a month) until the cisplatin started causing hearing damage. I will now be getting carboplatin instead.

Overall, I'm tolerating treatment well. I feel good and have gained 15 pounds, but I'm wondering if I should be doing something more. I'm just curious if anyone has had any success with alternative treatments or more aggressive therapies.

I'm also feeling a bit isolated. There are no support groups in my area that are suitable for me. Wondering how I might connect here or on another website with local people willing to meet face to face in the Philadelphia / South Jersey area.

Re: new to site, looking for support

Dear Clawler, welcome to our amazing family and you are no longer alone. We are the best little club in the world that no one wishes to join! The reason there are no support groups for CC is that it is still very rare and there are not enough people. You can join any Cancer support group but others say it is just not the same as what we have here. Try us out for a few weeks, you may love us too. With that said he do have quite a few people from NJ but where they are in in location to you I don't know. So, all you New Jersey people listen up and let Clawler know if you are near by.
Where are you being treated? I believe the only way to find out if you are being treated right and aggressively is to get a 2nd opinion. We are big believers in other opinions. I am glad to hear you are tolerating your chemo well. That's a big plus. Please keep us posted as we truly care. Come on NJ and Philadelphia!

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: new to site, looking for support

I am being treated at the University of Pennsylvania (Abramson Cancer Center) in Philadelphia. That's where I went for my second opinion after my original diagnosis at Cooper Hospital in Camden, NJ where I had a stent procedure that provided immediate relief.

Re: new to site, looking for support

Sounds good. I just know we have Members in NJ, so hand in and hang strong!

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: new to site, looking for support

Dear Clawler,

Welcome from the other side of the country. I'm glad you've introduced yourself. I think you will find wonderful support here. As Lainy said, this cancer is rare enough that it can be difficult to find local support, even in a place like southern California. That said, I have developed relationships and communicate personally with several cc patients in the area, but I met them all here.

I agree with Lainy that the best way to become informed about your treatment is by getting other opinions. Also, if you say more about the particularities of your disease, others here can share their experiences under similar circumstances. Beyond support there is a wealth of knowledge here.

Good to have you here!

Best wishes, Mark

Re: new to site, looking for support

Thank you, Mparsons and Lainy.

7 (edited by marions Sat, 03 Aug 2013 10:30:51)

Re: new to site, looking for support

Clawler....welcome to our site. Oops, sorry.  As I was writing this others already chimed in, but I will post this any way. I am thrilled for you to have found us. Several of our members are located in your area therefore; there is a good chance for you to meet someone in person as well.
Your weight gain is impressive, dear Clawler.  Other than your hearing damage, did you encounter any other problems?  And, what are your scans results?  Does it coincide with your feeling of general well being?
In re: to support groups for this cancer specifically, I don't believe that many exist (if any.)  This discussion board is comprised of hundreds of active members; sure wish we could meet under different circumstances though.  We are a tightly knit group of people focused on this disease only and we are emotionally vested in each and everyone's life far extending the disease of Cholangiocarcinoma only.
I am sure for others to come around real soon to greet you also.  Again, so happy to have you join in.
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: new to site, looking for support

marions,
Thanks for your response. My scan after 3 months of the gemcitabine/cisplantin routine showed a significant reduction in the size of the main mass--about 35% smaller. All satellite tumors and lymph nodes in the abdomen and chest also shrunk. My bloodwork is fairly good except there's been a recent spike in alkaline phosphatase. The chemo helped drop it back to the normal range at 112 for 2 weeks; then, it spiked to over 300. The doctor said it was likely related to the progression of the cancer and not a result of the chemo.

Re: new to site, looking for support

clawler:   our Percy produced a comprehensive overview of chemo agents available for this disease.  You might want to take a look at it:
http://www.cholangiocarcinoma.org/punbb … 198#p57198
The efficacy of these drugs is based on Phase I or Phase II studies (bias cannot be ruled out however; all are used and most in combination.
Has interventional radiation been ruled out?
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: new to site, looking for support

Christopher,

Welcome to our site. You will receive great support from this group and I hope you are able to meet others in your area.

You mentioned you had a stent. The alkaline phosphatase spike could be related to your stent. How is your bilirubin?  An increase in these numbers sometimes indicate it is time to exchange (plastic) or clean out (metal) stents.

Good luck with chemo and let is know how you are doing.

Suzy

Re: new to site, looking for support

Clawler,

My wife was diagnosed in mid-April with non-resectable ICC which included multiple tumors in the liver, including a large mass in the middle, and lymph nodes outside the liver.

We are on cycle 5 of Gem/Cis treatment (2 weeks on, 1 off per cycle). Her initial scan after 3 cycles showed improvement similar to yours. So far she has tolerated the chemo well.

We live in the Allentown, PA area so we are in your region. We have used Fox Chase and Sloan for second opinions and are interested in Penn as another resource in this area. I'd like to know more about penny's radioembolization. That appears to be a viable option after the Gem/Cis Is done.

Send me an email if you would like to talk further, share experiences going forward, etc.

Carl

Re: new to site, looking for support

Hi Clawler,

Welcome to the site. Sorry that you had to find us all here but am glad that you've joined us all as you have come to the best place for support and help and I know that you'll get a load of both from everyone here. And my thanks to you for sharing what you have been through so far, and I agree that your weight gain has been impressive so far and that is good to hear.

If we can help in any way then please just ask and we'll do what we can to help. I hope that your new chemo works as best as possible for you and please keep us update on how that goes for you. You are not alone in this, we are here for you and we care.

My best wishes to you,

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: new to site, looking for support

Hi Clawler,
Welcome to this wonderful group of loving, supportive and informed people. If you want to talk to someone please feel free to call me. I have ICC and was diagnosed in 2010, I have had 2 liver resections, severals chemos and several rounds of radiation.
330-903-6868
Lisa Craine

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: new to site, looking for support

Hi crawler. I am new to this group and I am so grateful that I have found it! I was diagnosed in July with stage 3 ICC had for the last 3 years have been living with this disease without knowing or treatment with little symptoms. I just started chemo last week same regimen you started on. Much strength and positivity to you on your journey!

Hope, love, strength...2013 and for the years to come, Porter.

Re: new to site, looking for support

marions:  I was told by 2 oncologists that I am ineligible for radiation.
SW55: Thanks for the information about the stents. I was originally told they last 2 to 6 months and I have just past the 5 month mark, so that makes sense.
Thanks for all the great feedback! It helps to know I'm not alone.

Re: new to site, looking for support

clawler:  stents can clog anywhere from 20 days to 90 days and beyond.  In fact, numerous patients need a  stent replacement every 30 days. 
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: new to site, looking for support

Clawler,

Welcome to our site and I am so very sorry that you had a reason to join us.  Because of the rareness of this cancer many people feel alone and isolated with no one to really relate to. This is one of the reasons that this site and specifically this discussion board exists.  You are not alone, you are one of us.

I am a 3 year 7 month 20 day survivor of extrahepatic CC (yes I count every single day!).  I had a Whipple procedure which removes the ducts outside of the liver along with some other pesky organs.  I had 6 months of adjuvant chemo but no radiation. 

I got 4 'second' opinions at different points in my disease from 4 different facilities (3 hospital and an independent oncologist).  All suggested the same course of treatment which put my mind at ease that I was doing all I could do. 

I wish you the best in your treatment and look forward to good updates from you as your treatment progresses.

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: new to site, looking for support

Clawler,
I will also chime in here. I receive my treatments at Fox Chase in Philadelphia., not far from U of P. I live in Willow Grove, about 1/2 hour or so from U of P.
There are a few of us from PA and NJ. I posted once before about having a get together somewhere in the middle, but the thread died.
My number is 267-625-9873. I don't answer unknown phone numbers, tho, because too many of them are bill collectors (the joy of a cancer patient). But I will call you back.
Maybe we can finally do something, possibly next month? My suggestion would be meeting at a diner/restaurant for lunch where they have a separate room so we can talk without "disturbing" other people with our cancer talk.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: new to site, looking for support

Hi Kris
Thanks for your wonderful posts and offer to meet up with "locals".  Whereas we are in NYC, sounds like you have so much experience, success and wonderful energy to share. I would gladly make the trip if you are willing to put something together.  Please keep me posted!

Re: new to site, looking for support

I have Stage IV bile duct cancer.  I had planned on seeing Dr. Catennaci at the University of Chicago for a clinical trial, but decided yesterday that I don't want to be that far from home.  Henry Ford Hospital, West Bloomfield, MI is calling to install my port for solutions of GEMCITABINE and CISPLATIN.  I am afraid to start chemo.  I am feeling fatigue but am still strong.  I'm having enough sadness without adding additional emotional burdens. I really don't think I am willing to go through the side effects of chemo.  Losing my hearing, mouth sores, hair loss, weight gain.....I don't believe I could handle it.   I am joining a support group at Hurley Hospital in Michigan that meets on Thursdays.  Question:  Can you tell me the side effects you had with Cisplatin and Gemcitabine.  Thank you and I sincerely wish you peace.

Re: new to site, looking for support

Hi LadyLinden,
So sorry to hear that you're dealing with this. It's been only 6 months since my diagnosis, and I'm still figuring it all out.
My experience with chemo might not be the same as other people's, but I can't encourage you strongly enough to give it a try.
For me the choice was easy. I was diagnosed in March, and suddenly, before having a chance to start chemo, I got very sick--loss of appetite, fatigue, weight loss, nightly fevers, and occasional vomiting. The insertion of stents gave me immediate relief, but my doctor told me I only had "a few months" if I didn't start chemo. I felt I had nothing to lose, and I expected the worst based on my prior knowledge of chemo from old movies.
In the five months of going through chemo, I have vomited only twice (one time after each of the first 2 treatments). I have had slight bouts of nausea for a day or two afterwards and some profound fatigue in the beginning, but I have not vomited a single time in 5 months. My fevers diminished after 2 weeks and have not returned. A CT scan after 3 months showed that all of my tumors and involved lymph nodes have shrunk. The primary mass in my liver was reduced by a third. I have been feeling well enough to travel, bike, walk, and spend lots of quality time with friends and family (though I am no longer working).
My weight gain (15 to 20 pounds-depending on the day) can be attributed to a number of reasons. At first I lost weight, so once my appetite returned I treated myself to whatever I wanted to eat to get back to my normal weight. Plus, before I got sick, I was used to being very active (working out and running) and my normal eating habits included many more calories than I can burn now that I'm less active. Furthermore, I'm doing a little bit of comfort eating as a consolation for having cancer--why not have dessert? and French fries? Pizza? Sure!
The doctor also said my weight could be affected by the steroids I get during chemo treatments. She has now recommended that since I'm not getting nauseous, she will eliminate the steroids.
I did not lose any hair, but I resolved that I wouldn't care if I did. Maybe a guy can get away with that easier than a woman can?
After 4 months I had my first setback. The cisplatin did cause some hearing damage, so they stopped it immediately and replaced it with carboplatin which is much less toxic. The hearing loss is not a big deal. It's more noticeable in a crowded restaurant than in a small room. I have that echo-like feeling you get the day after sitting near the speakers at a loud concert.
Overall, I am very happy with the results of the chemo. I never thought I'd feel as well as I do now.
If you'd like to contact me personally for more information, you can e-mail me directly at christopher.lawler@yahoo.com. I wish you well. It's great that you have a local support group.

22 (edited by thebompie4 Wed, 28 Aug 2013 16:55:34)

Re: new to site, looking for support

Lady Lindon

i know that every person is diff, but my husband has been on 8 rounds now (2 weeks on and 1 off) since March of this year.

He has literally had NO side effects from it other than tiredness for a day or two or three afterwards.  In fact he feels 1000X better than PRE chemo.

No hair loss, no mouth sores, no numbness and no cold sensitivity.
(perhaps he is really lucky?)

He is 44 (not sure your age) and has Stage 4 as well with one main liver
tumor, a few lymphs involved and a few marks in lungs.

Hope that helps.  I know each persons reactions are diff--but know
that there are some folks to react QUITE well to this regimen of chemo.

Dorien

Re: new to site, looking for support

PS-- he has also had NO nausea and gained back the 20 lbs he lost
prior to diagnosis.

Re: new to site, looking for support

Lady Linden - When you read the entire list of possible side effects, chemo sounds pretty awful but no one has all the listed side effects and some people have very few or none at all.  My husband has been on chemo for almost a year and sometimes it has been difficult.  However, we've spent time with friends and family, gone to concerts, taken walks and had a pretty good time together despite the obstacles.  We know that chemo won't cure my husband but we hope it will extend our time together and we haven't given up hope that something more effective (perhaps immunotherapy) will be available soon.  You are the only one who can make the decision about whether to try chemo but don't let depression make the decision for you.  Get all the facts, talk it over with those who are important to you, and then make the decision that is best for you.

Re: new to site, looking for support

Hi clawler and LadyLinden,
I would like to welcome you both to this site. I haven't been on this site much for the last couple months. My daughter, Lauren, had CC and unfortunately passed away in June from complications after a liver resection. She was only 27 and had fought valiantly for 22 months.

clawler- sounds like you are doing great and have a good attitude!!

LadyLinden- Lauren started out on Gem/Cis along with 5-FU. She would be tired and fell achy for a few days after her treatment, but seemed to handle it the best of all the different chemos she had and had a lot of shrinkage of tumors with it. She did lose her hair, but not sure which chemo caused it. I was curious as to why you didn't go to U of M Hospital. They have a great cancer center, great oncologists, and great surgeons. If you want another opinion, I can give you their names. They have a lot of experience with CC.

I wish you both all the best.

Love and hugs,
-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.