pcl1029
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Hi,
Most of “the immunology in cancer” research links put on this message board about anti-PD1 PDL-1 antibodies , vaccines and adoptive cell (ie: TIL) confirm not only CR or PR(complete or partial response )but PFS is longer and less side effects.
One of the purposes of published medical journal articles is to provide case studies (experience in a control setting);by reading them ,even just the summary, will give the reader about the experiences that the research had for that particular research. I am just a patient ,but I do believe by providing and reading the articles helps me a lot in understanding about this disease and provide me a better chance to survive longer and a better quality of life if God willing.
Have you have time to read some of the articles on the message board ?
If not , the answer is YES., read link below to understand more if interested.http://www.miamiherald.com/2013/07/26/3524311_p2/immunotherapy-the-newest-promising.html
God bless.
Hi,
if the tumor is confine in the liver and no metastasis to lymph node or other parts of the body;then the 4x5cm tumor can be removed and chemotherapy to follow.
Don’t worry to much at this point ,let see what the doctor will say on Monday.
knowledge for this disease and you can start on this link if you like.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=74480#p74480
God bless.
Hi, Pat ,
You are a strong and determined woman that can make such a difficult decision of choosing NO treatment. I am a patient of this disease too, I fully understand ,as a patient myself, what all those thoughts going through my mind night after night trying to make choices of when to treat with what and when not to treat with that; I am sure the same apply to you when making such a hard decision.But I always thank our LORD giving me choices rather than none.
On the other hand, I hope ,besides chemotherapy consultation with University of Chicago, have you asked them to review your case by the multidisciplinary team that beside chemotherapy, involved interventional radiologist (IR) to look at your case? Or can you try one more time and select a big hospital or Northwestern university in Chicago to get a 2nd opinion on IR.
The reason I say that is,IR treatment(RFA,microwave ablation,chemoembo and radioembolization ,nanoknife) are relatively new,save and easy to take and much less side effects to have. I did microwave ablation ,cryoablation and PEI for liver mass and Lymph Node and experience no side effects afterwards. Even adverse reaction(side effects) is different from patient to patient, but IR procedures are among the easier and most tolerable procedures.I suggest you take a look into IR to see what IR treatments can help you.
I am talking about IR and NOT SBRT or IMRT or other forms of internal or external radiation treatment; those radiation treatment do have side effects that I don’t want you or me to have.
My point is that if you exhaust all treatment options and not just chemotherapy; then you will at peace with yourself and your love ones when the final decision are made; may be you have done so but I did not notice you had mentioned on all your previous messages. From a patient like me to a patient like you, I admire your courage and wisdom in handling your disease.
God bless.Hi,
Lets wait until the scintigraphy which might be looked at by a consultant beginning of next week to see what the result first.
Cholangiocarcinoma(CCA) usually is an aggressive but slow growing tumor; what I mean is the final outcome of this disease is not what we can hope for at this point in time (ie: a CURE);but time may be on our side if we can hang in there for the next 5-7 years when a drug can be found using genomics as a guiding tool.
CCA is “a tough to swallow cancer” even if you have the chance to treat the tumor at an early stage. The hard to swallow part is that no matter what you do, the recurrence is always a real problem that patient,like myself, cannot be ignored.And being living in fear of such make patient’s lives ,both physical and mental,much more difficult to bear. the only thing that we can help our self is keep our knowledge uptodate and seek treatments that can prolong our lives in time for the cure.
God bless.Hi,
The one in June will be fine. and is your boyfriend <50 of age?
and I have just add a link in the previous message for you since knowledge is power.I saw someone from Scotland have answered you.
Keep in touch.
God bless.Hi,
On the CT report ,do they tell you the location and size of the tumor?”
Mets to lung(lung nodules) are not uncommon, but it seems ,in your boy friend’s case shows up quite early as well as the bone pain.The lung can be treated by RFA or microwave ablation .
I presume he has intrahepatic CCA if tumor presented in the liver;
to have chemotherapy or not after liver resection is still a debatable hot topic but it seems most of the doctors in the STATES will give adjuvant chemotherapy to follow after resection.
Extrahepatic CCA mostly grow alongside of the left or right or the common bile ducts.Did your boyfriend has jaundice as symptom and how he discover he has invasive CCA.
If you don’t mind direct quote from the CT report will be most helpful .the following link may be of interest to you .
About ultrasound, CT ,MRI and PET scanhttp://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=56542#p56542
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=74480#p74480
God bless.Hi,
Has RFA or microwave ablation been in discussion for treating the tumors in the liver.( These are procedures that may burn off the tumor if the sizes is around or<30mm.unless the locations of the tumor do not allow such .)
I do not know the health and medical system in UK? may be Gavin or others can give some pointers of this.
God bless.Hi, Patzel,
May I ask how old is your boy friend? It helps for future treatment decisions.
And where he will continue the treatment? (Germany or Scotland). Our Gavin is located in Scotland and he is very familiar with the medical system there. He can help you in many ways.(ie; Can your boyfriend get scan every 3 month instead of 6 month or none at all; Will he need chemotherapy or not after resection and how to get the lab work done on an regular basis,every 2-3months for CBC,BMP,Lipid panel,CA19-9 or other biomarkers.)For most of the biliary stents replacement ,we are talking about extrahepatic CCA. Since your message stated “taken out and not replaced”, I took the liberty of thinking the other way.
But my question is to find out “the actual diagnosis” first. If the primary diagnosis is not cholangiocarcinoma but of other kind of liver disease or metastasis from other parts of the body, then it may not provide you any useful info to help you.
So if you can try to find out the following.
1. the Primary diagnosis
2. the Stage if possible (ie:T1N0M0)
3. Is the bone pain related to the primary diagnosis?(get a copy of the report)
4. the Ct scan report.(it will tell you a lot about your friend’s illness.),if you can ,insist to have a copy for yourself or boy friend for future understanding of the progression of the disease.)
God bless.Hi,
I am a patient of this disease for four and half years since diagnosis and I had 3 resections and other procedures to extend my quality of life.
Recurrence is always in my mind since day one for there is NO cure for this disease. As you know by now , even after resection or transplant will not guarantee the NO return of CCA ;for the literature always use the word of “POSSIBLE” cure instead of CURE. My personal point of view is that biologically, if the liver cells can regenerate itself,so does the CCA cells in the liver and the bile ducts , even just one CCA cell left after surgery ( both originated from hepatocyte).And only a few of us are so lucky to pass the 10 year mark or the 15year mark without recurrence. But I always thank God for His Grace for the extra time He gives me no matter how many months or years left.
Compare to intrahepatic CCA ( which I have),and your husband’s distal CCA, the chance of recurrence for your husband is much lesser than mine.(<50% vs50-75%). I do not think your husband needs chemotherapy before surgery based on your description above since the tumor is small.However on many other occasions chemotherapy are often administer as neoadjuvant chemotherapy to shrink the large tumor before surgery.I hope to above info give you some answers to your question.
God bless.Hi,
Do you know is it intrahepatic(ICCA) or extrahepatic;
in some case of ICCA, they can remove the stent which is about 1.5 inches long and as thin as a big tooth pick(0.3mm or so.)
find out which type of cholangiocarcinnoma.?
God bless.Hi,Lisa and Kris,
I am sorry to hear that, I live in the States too, but may be our insurance are different. I have no problem with the insurance company. Or may be it is not an uncommon practice around the oncologist group practice that I go to.
I got a CT scan and shown 2 lesions ,one with foci and the other not. Then the doctor ordered a PET to follow, within 7 days ,and discovered another soft issue foci developed in one of the lymph node nearby, (1.9×0.8cm);small enough to give me more option to decide on treatments. CCA is a “relative slow growth CA”
So your oncologist or health provider and health insurance may say no .In my case, I verified above what the article stated and that is my intention .
God bless.Hi, Michele,
Dysarthria (Dysarthria is when you have difficulty saying words because of problems with the muscles that help you talk.) is one of the side effects of irinotecan.Back pain and abdominal pain are also side effects of irinotecan too. Irinotecan has anticholinesterase activity which may prolong neuromuscular cholinergic activities,please consult with the oncologist.
God bless.Hi,Holly,
Anti PD-1 or PDL-1 antibody are also belonging to immunological Tx.http://www.nejm.org/doi/full/10.1056/NEJMoa1200690
http://cancerres.aacrjournals.org/content/73/12/3591.abstract
Keep an eye on the similar one too like anti-CTLA-1.
Thanks for your compliment .
God bless.Hi, Holly,
I do agree with your assessment about liver transplant.
I think the next logical treatment ,if needed, at least for me , will be the immunotherapy and/or the chemoembolization, microwave ablation,
RFA, IRE, cryoablation and radioembolization if needed unless resection will be an option.
God bless.Hi,
I agree that was the cumulative side effects of GEM/CIS.
I had gemcitabine for 18months and gemcitabine supposed is one of the LEAST emetogenic chemotherapy agent. I have no problem for the first 12 months of treatment,but the last 3 months was a different story.
Cisplatin is one of the MOST emetogenic chemotherapy agent rated. Therefore I am not surprised to see such side effects even after a few doses of it given.
If Zofran and steroids (ie: hydrocortisone –solu-cortef ) ,Compazine and Ativan cannot provide adequate control; newer types of more potent anti-nausea and vomiting agents such as Emend or Aloxi may be prescribed by your doctor if patient will continue GEM/CIS for a while; Fatigue is very common .
For control of diarrhea, loperamide(generic for Imodium), and you can get it over the counter without Rx), take 2 tablets or capsules ASAP after the first appearance of diarrhea, then every 4 hours as needed after each subsequent diarrhea for up to total of 8 tablets /day maximum. If still having problems,call doctor for additional management advise.
God bless.
