thanks  Catherine for your reply.

My dad had the SIRT on Wednesday. Naturally we have a 4 weeks wait to see if works or not.

I am interested about the lobectomy that you describe. Could you send me the papers that you were able to dig up. It sounds very interesting and if Dad has a response to radiotherapy I believe it maybe a good option for him (naturally only if radiotherapy works).

Teresa

Hi all,

I often read through other people's posts to learn more about this disease. Sometimes I just stick to the good news section as it can be a bit much however I have always found people's experiences useful. I wish to provide this summary just in case useful for others

- August 2011: dad diagnised with VERY small peri-ampulary carcinoma. Decision to have wide ampullectomy instead of Whipples as so small (I always wonder if we had had a Whippples straight way if things would have been different and I must live with this

- March 2012 - due to recurrence he had a Whipples. Negative margines. no lymph node disease detected (however not many lymph nodes taken out). He was not offerred adjuvant chemotherapy (and I asked two oncologists in Australia)

- Nov 2012 - CA 19_9 went just above Reference range and they saw possibile lymphadenopathy on CT scan

- April 2013: He started a clinical trial with GEM/Cisplatin & Panitumumab. Good stable disease for close to a year however the Panitumuba rash was harsh. Dad requested a two month break and then he has disease progression in April 2014 (a small liver lesion picked up on CT. Previously only seen on PET)

-  April 2014. He started FOLFIX however after 6 weeks treatment progression was seen on CT (just small progression on CT csan of liver lesion

Dad had a two month break
- August 2014 He shad Abraxane monotherpay for 3 cycles. Despite this he had significant progression in two liver tumurs. Interestingly his lymph node disease is no longer apparent,

Now he has bascially liver disease (two lesions). two Australian surgeons have said not to operate  and are suggesting local radiotherapy (Yttrium-90 ). I have spoken to two Italian teams (where I live); one has said to resect and another has said not to resect. I was VERY lucky and Dr Kato also reviewed his scans and said that he has resectable disease (naturally he was clear to say that he has metastatic disease so is not a CURE).

I have just arrived in Australia and dad appears weaker than when I last saw him. The last chemotherpay took its toll. We have decided to try Yttrium-90  radiotherapy (as dad doenst seem keen on surgery straight way) and then we can evulate. I am hoping that he will get fitter in the meantime.

What is interesting and I would love if someone knows why. On his last blood test his CA 19-9 has gone down from 1138 to 568 (despite no chemotherapy in between two test) however his CEA has increased from 26.1 to 46.6. I dont know what that means.....Anyone can help.


I hope this summary helps someone

All the best

Teresa

3

(4 replies, posted in General Discussion)

Thanks so much Debbie for your advice.

I must admit I have been very impressed by Dr kato-s office and also him personally. he was kind enough to ring me the other day (pity I  was just about to change planes to go to Australia).

he has impressed me so much that even though it will be expensive I believe if we (my dad specifically) decides to operate we will go to NYC and see him.

I will post a summary of my dad in a differnet post just in case it helps other people

Teresa

4

(4 replies, posted in General Discussion)

HI all,

I am feeling quite lost and with an incredibile decision to make.

Two Australian surgeons have reviewed my dad-s case and not sugested resection.

However I have sent his scans to a well known Italian surgeon and also Dr  Kato. Both have replied that they consider surgery as an option.

I am not sure what to do as I am not sure if the surgery is "curative" as he has had lymph node disease in the past. It would be great to be able to speak to Dr Kato so I can ask my questions.


any advice an thoughts?
teresa

Hi Genevieve,

My father has 2 liver lesions and I would like that he is seriously considered for surgery. I know that it is not intra hepatic carcinoma however am wondering whcih hospital your husband visits and whom is his surgical/oncology team?

thanks
Teresa

6

(4 replies, posted in General Discussion)

Hi all,

Our family has tried to live a normal life lately and to be honest I really didnt wish to think about this terribile disease for a while.

However I wish to provide an update on my dad.

Unfortunately after the GemCisplatin and Panitumuab trial which gave us stabel disease for close to a year he has tried FOLFOX (6 weeks only and progression on CT scan), Abraxane (3 cycles and progression on CT scan).

His last CT scan last week shows two liver lesions a 5 cm one and a 3 cm one. Interestly we cant see his lymph nodes anymore.

His oncologist is suggest a Phase I trial with a met inhibitor. I believe this is similar to the the Lily drug that Kris is on.


https://clinicaltrials.gov/ct2/show/NCT … mp;rank=12

I have asked that his oncologist review his case at the next mutli disciplinary meeting as I would also like to understand if we could consider any local treatment options. I know they are not a cure however if it could give us some quality time we would be happy.


Kris; to enter the trial did you need a cMET mutation as they are not testing this (and from his gene testing he did not have this so I am wondering if it would really help).

I am a bit lost and dont know what to do.

Is it strange to miss people you have never met ....... as sometimes I think of Percy and I really feel that I miss his helpful and touching suggestions......

All my respect to the moderators on this board. I am sure it is not easy.

Love teresa

7

(57 replies, posted in Members' Cafe)

Dear Samuel,

I only knew your father through this board and it is incredible to believe however I also felt his courage and what an incredible person he was ........from so far away.

He really helped me in a tough time and I will forever appreciate that. He and your family will be in my thoughts and prayers.

It must have been wonderful to have a father like him. A truly inspirational person .

God bless

Teresa

8

(57 replies, posted in Members' Cafe)

Dear Percy,

I just wish to say that you also touched my life.

The way you have managed this challenge life has given you is an inspiration to all.

I know you are a religious man and hence I will pray for you.

God bless
teresa

9

(39 replies, posted in General Discussion)

All,
I am sorry to all that I have been absent for a while. I would read posts regularly however if I had to be honest I needed a bit of a break ( I sometimes just need to read only the positive posts)


Percy , I can only echo what everyone has already said. The strength you personally gave me when my father was diagnosed with metastatic disease was inspirational, all the more because you are also affected by it.

I wish all the best for you and I will add you to my prayers.

All the best
Teresa

10

(6 replies, posted in General Discussion)

HI all,

thanks for your responses. I feel like you have all become "old" friends.

Unfortunately as feared he has disease progression as a liver lesion has grown... 8mm in 6 weeks. Seems like alot to me.

However I have to give him credit he has already discussed with the Oncologist starting FOLFOX on Monday. Anyone have any experience with this regimen?

I know it was hard on him however we had gotten used to GEM/cisplatin and Panitumuab and also the wonderful cinical trial nurse..... I hope our experience with FOLFOX is even better but am of course worried...

Rain

11

(6 replies, posted in General Discussion)

Hi forum friends,

I have not posted for a long time...... If I have to  be  honest i think i needed a break for my mental state. However I have checked this site regularly to see how everyone is doing.

This disease is a difficult course for the person however also for the family. You have good news some days and then not so good news the next.

My dad had a two month break from chemotherapy .....then he re started however his tumor markers are going up so am wondering it isn't working anymore. We get his CT scan results tomorrow ...... Please pray with me.

Am pleased his family is joining him in Australia next week for morale support.

All my best the the wonderful people on this board. If anyone wishes to try panitunumab gem and cis, at least for my dad it kept him stable for close to a year and I guess that is good..... Naturally I was hoping for more that this however ......

I just hope that the rapidly increasing tumor markers are something else....
Luv,
Rain

12

(0 replies, posted in General Discussion)

Hi forum friends,

I have not posted for a long time...... If I have to  be  honest i think i needed a break for my mental state. However I have checked this site regularly to see how everyone is doing.

This disease is a difficult course for the person however also for the family. You have good news some days and then not so good news the next.

My dad had a two month break from chemotherapy .....then he re started however his tumor markers are going up so am wondering it isn't working anymore. We get his CT scan results tomorrow ...... Please pray with me.

Am pleased his family is joining him in Australia next week for morale support.

All my best the the wonderful people on this board. If anyone wishes to try panitunumab gem and cis, at least for my dad it kept him stable for close to a year and I guess that is good..... Naturally I was hoping for more that this however ......

I just hope that the rapidly increasing tumor markers are something else....
Luv,
Rain

Dear Ilias,

I am so sorry to hear about your mother. All my thoughts are with you


Teresa

Hi friends,


Just  a quick post to  say Dad's CA-19-9 was 18 yesterday!! CT San showed some shrinkage (a few mms but I will take that)

All the best to everyone here

Teresa

Havent connected for a while and was SO HAPPY to see this news!!!

All my best wishes for Tiffany and her Family

Teresa

Excellent news Lisa .... Am so happy for you and your family
Teresa

Dear Percy,

I just wish to personally repeat what everyone has said. It takes a special and strong character to help so many other people facing the same challenge you are facing.

I am sad to hear this news but please continue fighting this disease like you have always done; with strength and courage.

Your words and comments have often given me courage and I hope we can do the same to you.

Teresa

Hi friends,

Just a quick post to give our board some good news.

Dad has his port put in on Tuesday and after three cycles of Chemotherapy his CA 19-9 came back as 32 (normal under 38).

I know this is good news and and for this I am grateful

I am so grateful for this board,

Teresa

I am so happy for you Kris!

We want an amazing result for an amazing woman!

Teresa

20

(167 replies, posted in General Discussion)

Dear Pam,

I can't express how sorry I am for your family.

You are an incredibile person helping so many people in addition to your wonderful daugther.

I know that you will find the strength to pass this incredibily difficult time from your beautiful family.

All my thoughts,

Teresa

Hi all,

Am so sorry have taken a while to post  Dad's results. Have felt so terrible for what Pam and her family are going through that didn't fell like postings.

Dad original scans showed some non specific soft tissue along the hepatic artery. Also he has some lymph node disease. His recent scan conclusion states; sites of soft tissue abnormality remain relatively unchanged . However the report also states that some of the lymph nodes show cystic necrosis which our Onc thought is tissue death possibly due to chemotherapy.

I know this is good news however must admit was hoping for some shrinkage (even though maybe 6 weeks is a little early????)


My only concern now is dad's mental state: he is becoming more and more down as he realizes this is not like other cancers where there is a set number of cycles.

I think he wishes to return to his home town in Italy in August and now I am wondering if in August we should organize a chemotherapy break (the trial allows a 5 week break) so he can have a visit with his family whilst he feels well.

Naturally I am scared of having a chemotherapy break but if he wishes to do it ( his mind changes daily so hard to tell) I will try and organize it.


All advice regarding chemotherapy breaks?

22

(167 replies, posted in General Discussion)

Pamela,

I can only imagine how hard it must be for your and your family at the moment.

You are a very special and united family.

All my thoughts and prayers for Lauren's recovery

23

(167 replies, posted in General Discussion)

All my thoughts and prayers for Lauren

Congratulations Gregg on good scan!!!

Quick update on Dad.

His CA 19-9 went down to 51 after two cycles of chemotherapy.
He had his CT scan on Thursday and we get the results on Monday afternoon - please wish us luck.

I am going back to my two young kids in Italy on Wednesday and would hate to leave if we get negative news......


Al the best