Topic: New member - advice appreciated

Dear all,

I have been reading the posts the last couple of weeks and would like to thank everybody as it has been an enormous support

My father has CC.  He lives in Melbourne, Australia. He is a 67 year old very fit man whom was orginally diagnosed in 2011 with a small  tumour at the ampulla of Vater. He had a wide local exicision with very close monitoring via ERCP. Unfortunately tumour came back in the bile duct and he had a Whipples in march 2012. He had clear margins and his lymph were negative hence his onoclogist stated he didnt need any chemotherapy (I asked for two opinions... am wondering if I should have done more?)

Unfortunately his CA 19-9 (which was normal before) started going up (45 in Dec where they werent sure of significance, then 41 in Jan and now in March 98). His CT scan in March revealed enlarged abdominal lymph nodes compared to scan performed January. His PET scan then revelaed increased uptake in some of lymph nodes (not all of the enlarged lymph nodes) seen in CT scan however also in liver (however his CT scan showed no tumour in liver).

Surgeon has said he is not a resection candidate as it is in his lymph nodes. Oncologist has said we cant use radiotherapy and standard in Gem/Cisplatin which seems a bit backward to me (not using a biological I mean)

We are waiting for his KRAS testing  to see if he can take part in a clinical trial in Melbourne (only gets in if wild type) with Gem/Cisplatin and panitumumab.

This is not very common in Austalia and I feel that maybe the US medics have more experience (and are maybe more aggressive?) in treating this disease.

My dad really wishes to fight this (the Oncologists discussion of there is no cure,  treatment is only palliative and hence you can decide to wait to be treated seeing he has no symptoms was hard for him to digest).

I am wondering if anyone has experience with Gem/Cisplatin and panitumumab on this site?

I am also thinking of getting a second opinion in the US and am wondering if anyone can suggest the key expert in the US (I have read about Dr Sun in Pennsylvania)

Anything else people can suggest I would be most grateful (i note that some people are taking Celebrex (?? what dose) and also Vitamin D (? what do oncologist think of Vit D?)

thanks again

Re: New member - advice appreciated

Hi new member and welcome to our site.  Rain, enclosed are a few postings some of which may be of help to you:

http://www.cholangiocarcinoma.org/punbb … hp?id=9418

http://www.cholangiocarcinoma.org/punbb … 453#p62453

http://www.cholangiocarcinoma.org/punbb … 152#p62152

http://www.cholangiocarcinoma.org/punbb … 660#p51660

Rain, the clinical trial mentioned by you, is it only held in Australia.

I am sure for others to come around real soon and share their thoughts with you.  Please stay in touch.
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 member - advice appreciated

Dear Rain, welcome to our extraordinary family but sorry you had to find us. My husband had CC at the Ampulla Vater as well and they did the Whipple a week after finding the CC. 4 ONCS, Surgeon etc all said no to Chemo/Radiation. He was 73 at the time and did well for 3 years when the CC returned to where the Duodenum used to be.  He then had radiation to bring the tumor under 7CM for Cyber Knife, which was amazing and bought him 2 1/2 more years when it again returned to the same area. We are big believers in 2nd and 3rd, 4th opinions to validate the prognosis, if for nothing else, the validation.  Marion has sent you some informative links and perhaps they can help answer some of your questions.   
Not one of Teddy's Docs suggested Vitamin D but did give him Vitamin B injections once a month for energy.
I don't see anything wrong with faxing his Medical records to a couple of ONCs in the U.S. Much good luck to you and please keep us posted  on your Father, we truly care.

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.

4 (edited by PCL1029 Sun, 07 Apr 2013 08:06:08)

Re: New member - advice appreciated

Hi,
There  is no consensus regarding the optimal management after resection and the true benefit of adjuvant chemotherapy  remains uncertain for Ampulary.
In the States, however most of the patients with resected ampullary cancer stage IB or higher will offer adjuvant chemotherapy.
Depending on the true origin of the periampullary tumors which are of intestin al,biliary or pancreatic origin is very important in pts with metastatsis as the approach differs since the optimal regimen for ampullary is not established.GEM/CIS or GEMOX have been used as well as GEMZAR mono therapy; Infusional 5fu is preferred concurrently with chemoradiation,followed by gemcetabine alone for the chemotherapy portion.uptodate.com(oct.2012).
clinical trial is another option.
Ampullary Cancer is among biliary cancers that has the highest 5 yr survival rate than any of other form of CCA.

For overall 2nd opinion, MASS Gemeral or John Hopkins is the place to go;
For surgical consult, Dr.KATO is the guy because he is very experienced and willing to be on the cutting edge of liver surgery.Talk to him first is not a bad ideas but should be as soon as possible due to the multiple lymph nodes involvement in your case. If you have peritoneal carcinomatosis(abdominal lymph nodes did mention in your message), then it may be too late for this consult.Mare sure it is not the case.
For oncology consult, MD Anderson in Texas is the place to go.but I will wait for the assessment of DR. KATO first.

I took vitamin D1000 units twice daily for about 2 months, it  lower the ALP to about 10-12 points withtin one month in my case.But I ask my oncologist what  is that mean. he said ,I only monitor and check why the ALP goes up with regard to the CCA; but not about the lower value and what it means.We just don't do that. and he may be right,he is my friend and I think he spoke the truth. therefore I stop doing vitamin D,( it goes below 32)

I took Celebrex  too,but the recommended high dose for cancer is too high and can cause stroke and cardiac problem.it does require a bit of medical and pharmacology knowledge to titrate the dose for the maximum benefit and watch for the side effects as it comes with.I am not a doctor but a patient only, and as I said before," I am a one man clinical trial specimen" and for that ,please ask your doctor to see Celebrex is right for you.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member - advice appreciated

Hi Rain,

Welcome to the site although I am sorry that you had to find us all. And I am sorry to hear what your dad is going through as well. Glad that you have joined in with us though as you are in the best place for support and help and I know you will get lots of each from everyone here.

Just in case you missed it, we do have an excellent chemo board here on the site and it can be found here -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

Apologies if you already knew about that!

Thats great if you can get your dad a second or third opinion in the US and please let us know if that is something that your dad is going to do as I know that you'll get loads of help with that. Here's a list of major treatment centres in the US and apologies again if you have already read this!

http://www.cholangiocarcinoma.org/major … enters.htm

Please keep us updated on how everything goes for your dad. Ask questions if you have them and we'll help if we can. We are all here for you.

My best wishes to you and your dad,

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 member - advice appreciated

Thank you everyone for your support. I must say I check this site everyday.... Believe it is some type of coping mechanism.

We are still waiting his KRAS testing to see if he gets into the trial. However in the meantime I have sent emails to Dr Kato and dr Javle for their opinion. I hope they respond.

My fathers story is sometimes painful as in 2009 he was admitted to hospital because of abdominal pain and jaundice and they said it was a viral hepatitis (US revealed no dilation of bile duct). He had persistent elevated LFTs and finally he asked his GP to see a liver specialist. I always wonder if we had found the stones 9 months earlier if things would have been different. This specialist performed an MRCP and in the end in 2010 we discovered stones in the bile duct (no tumor at the time). In 2011 his LFTs went up again and we found the small tumor at the ampulla of vater. My father is so angry and he feels that the un diagnosed gallstones caused all the inflammation in his biliary tree and hence his CC. This is possible however we will never know.

Unfortunately this situation has also lead me to become a little distrustful of the medical system and I feel I have to re- check everything myself.

I would like to thank everyone for the support on this site. I also hope I can soon give such support back.

Re: New member - advice appreciated

Dear Rain, CC is most often a very difficult Cancer to Diagnose. As I had said to you the Ampulla of Vater is where my husband's CC was located. Not so sure that just the stones would cause the CC. One can not go back and second guess, although it is a natural thing to do, the anger will not change anything and will not help the situation as it is using up energy that is needed to fight the CC. I know you are awaiting news about a trial but is any kind of treatment being done now? Have you gone where you live for a 2nd opinion? I am sure that you will hear from the Doctors here that you have written to. That 2nd opinion may give you validation as to the first. Good luck on the KRAS testing and wishing your Dad the very best.

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.

8 (edited by PCL1029 Sun, 07 Apr 2013 08:03:30)

Re: New member - advice appreciated

Hi,
The link below will give you facts about the GEM/CIS+ Panitumumub.

http://clinicaltrialsfeeds.org/clinical … CT01320254

Our Gavin find it out a while ago.

Santdad is a patient on this trial of chemotherapy and Panitumumab and you can just use the top right hand box to search for his name and you can find his treatment progress, side effects and the courage to go thru this study.
He unfortunately passed away.

But base on one other study of  GEMOX and Cetuximab, which is similar to GEM/CIS + Panitumumab , which is similar in using the same family of both the chemotherapy drugs and the same family of EGFR targeted agent, the outcome of the study is not that much different than just use GEMOX alone( the Bingle trial conclusion at ASCOin 2012.)
CCA is a cancer that has no cure except surgery, radiation may help , systemic chemotherapy may be of some value if it had metastasized outside the Hepatobiliary system and it is palliative use only in your case.. But knowledge will help you to make sound decisions including when is enough is enough.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member - advice appreciated

thanks Lainy and everyone for your feedback.

We just heard that my dad is KRAS wild type so it looks like he will start treatment next week (it was hard waiting while his CA 19-9 just went up and up however he was not allowed to start treatment before trial)

I got a second opinionj in Australia however bascially message was always the same; treatment is palliative only and seeing he has no symptoms maybe it is better to wait to be treated however if you like we can treat. As you can imagine this was not easy to deal with - you want to fight as much as possibile.

I know that the data regarding EGFR inhibitors hasnt been that great however I noted that Tiffany had also been prescribed Gem/Cis and Tarceva from Dr Javle whom seems to really know his CC hence I tought it was worth the try.

I just hope he is able to tolerate the treatment (I am flying to Australia next week to be there with him) In the meantime I am still awaiting to hear back from DR Kato & Dr Javle.

any other suggestions on what we should be doing to help him tolerate the treatment better or any alternative healing approachs would be most wlecome. We wait to do all possibile to give him the best chance

thanks again all

Re: New member - advice appreciated

Dear Rain, I think I would e mail a note to Dr. Javle and Dr.Kato asking if they received your information. It may have gotten lost as they usually answer pretty quickly. I know this is all pretty rough going, but listen to your gut, it won't steer you wrong.

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 member - advice appreciated

Hello Rain,

This may not help since treatment is planned for your father, but have you tried people at RPA/Mater in Sydney for another opinion? My husband was seen there last year for 2nd resection for ICC (local surgeon was away), and oncology second opinion. They see quite a few CC patients.

Regards,

Genevieve

Re: New member - advice appreciated

Hi Genevieve,

Whom do you suggest seeing there?

Thanks,

13 (edited by Genevieve Wed, 10 Apr 2013 22:09:09)

Re: New member - advice appreciated

Hi Rain,

We saw Dr Charbel Sandroussi - surgeon, and Dr Peter Grimison - oncologist (for opinion on adjuvant therapy after the surgery).

RPA has the national transplant unit and the doctors there also operate privately at the Mater.

Best wishes,

Genevieve