new to site, looking for support
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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.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!
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 CraineHi 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
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
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.
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/viewtopic.php?pid=57198#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,
Marionmarions,
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.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,
MarionDear 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
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.
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!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.
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