chrisna
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Hello Jeff,
I am new to these posts, but boy did your story touch me. My friend has been diagnosed with cc and I have been researching. Please check out First Immune, specially if you travel to England.
You can contact me at:
chris@youngstarhouse.com
if you like more information
Best
ChrisnaHello all,
I am exploring Chemo-sensitivity testing before considering to do the chemo. Since we do not have a fresh tumour for testing, we are considering testing for circulating tumour cells in the blood. They do that test in Europe with a company called RGCC. Has anyone tried this???
Bless you all,
ChrisnaThank you all for explaining things!! I will use the SEARCH mode to get more information.
I like to find out about post surgery pain. Is there expected nerve damage?? Long term pain? Digestion issues (Mike seems to have more digestion issues since his laparotomy)? As always, your kind responses help us to get a clearer picture of what is ahead…
Thank you,
Chrisna.Thank you all for your kind responses!!!
I have sooo many questions…please help if you can.
1. Is there anybody on the forum who did not do surgery or chemo although offered?
2. Is there anyone out here who if outliving the dismal odds they gave us?
3. Is surgery only internal or is there an external duct? I read that some needed “their (stents) ducts” cleaned daily??
Has anyone tried GcMAF???
Thank you all for sharing
ChrisnaAll-Star,
Thank you for answering my post.
If you are willing please tell me more about the surgery. What did they take out, how long did it take? Any life style changes, quality of life?
I take it in America there is a Board??? And they decide?? So if we go to Mayo…we need a Board???Any additional information would be appreciated.
Thank you so much.
ChrisnaUpdate:
We are waiting for another opinion from Mayo in Rochester, based on scans and reports. We have no idea how long this will take.
On the other side we have been told that the disease is stable at the moment, as there is essentially no change when viewing scans.
The Doctors are advocating chemo followed by surgery. My question is:
Why is everyone pursuing surgery?? The outcome seems rather dismal to me with horrible odds. Has everyone had significant success with surgery?
Thank you for sharing,
ChrisnaDear Lainy,
Thank you so much for your reply….You are right, we will get another opinion. Please know though, the surgeon we consulted is in Princess Margret. I hear he is the best. Maybe we do not understand things right. We have another consult with Doctor MacGulvray (whose fellow surgeon gave us the dismal odds), and hopefully we will know more after the 17th.
Thank you again,
ChrisnaThank you all so very much for the support and good wishes.
We just got back from Winnipeg where Mike’s stent was changed (4th stent).
Mike got sick after the stent change (vomit/chills) and we spend eleven hours in emergency. Things are improving though and we are now back home. Another round of Doctor appointments are coming up next week.
We are still struggling with making decisions. The Onc said that surgery will not be done unless Mike has chemo first. Given that they can not confirm a tumour, and they can not see any mets…how would they know if the chemo is working??????What tests should be done???
Mike will have to make a decision soon, because they will not deal with the hernia issue until the big surgery is either on or off.
We will follow the advise here and get another opinion asap.
Here is the big, big question: Is surgery a cure?? Or is the Surgeon right that 70-80% recurrence is the norm??
We are struggling to understand the benefits of chemo (not knowing if its working) and the benefits of surgery (if he survives it in the first place) when it just comes back right away….
What else is there to do???
We can put a man on the moon, but we cant help the people we love.
Thank you for letting me vent.
ChrisnaDear KrisV,
Thank you for your encouraging words. Do you mind telling me how long your husband has been struggling with this disease and maybe tell me a bit about the chemo treatment. What did he take, side effects, quality of life…results? Please tell me as little or as much as you want to share.
Thank you,
ChrisnaLisa,
Thank you so much for your caring response. We just have a hard time committing to such risky surgery and chemo when in fact they cant see a tumor and the PET scan did not pick up mets!!.
Mike is feeling generally quite well and everyone says he looks good. Even the Doctors commented how good he looks. While he had jaundice he lost 40 lbs., but he was overweight at that time. He is keeping his current weight of 190 lbs.
Now we have discovered a hernia where his scar is..so more stuff to worry about.
We are also confused about the chemo- the onc said a mix of 2, the surgeon talks about a different mix and quotes an ABC trial type mix (we have no idea what that is). It gives us some sort of feeling that no one really knows what should be used.
Has anybody done ‘Chemo sensitivity testing” before taking chemo??
Thank you for letting me vent!!
ChrisnaThank you so much for making us welcome!!
Here are more details… The original laparotomy was done in Winnipeg by Doctor Lipschitz last November 4. Our second opinion was with the Doctor in Toronto (Princess Margret) via tele-health, and we do have the clinical note from there where the odds were put down in writing..so no misunderstanding there.
Other than the stent changes, there has been no allopathic treatment.Some of my questions would be : 1. why cant they see the Klutskin tumor on scans?
2. Should I get a third opinion..ie Mayo Clinic ( its about 6 hours drive away)?
3. If surgery/chemo is not curative…should it be considered at all?Thank you for caring,
ChrisnaHello everyone!
I am contacting you from NW Ontario, Canada. My best friend has been diagnosed with cholangiocarcinoma, ( apparently an adenocarcinoma), and I am here because I have read how you all support each other. I do need such support and in turn I want to help others, who have to face this horrible disease.
I am bursting with questions, but many such questions may have been answered in some of the posts. Please bear with me as I have not read everything on this site.
Any and all advise is very much appreciated!!!
Thank you,
Chrisna
