37 year old male diagnosed with stage 4 CC – welcoming any advice
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Thank you Marion! I started a new topic about my plan! I didn’t want to take over Jason’s. :o)
Jason- If it hasn’t spread, then you should take to the doctors about transplant. I see Dr. Javle at MD Anderson, and he helped me get on the list at Methodist!
Tiff….it always is thrilling to hear from you. Tiff, would you be so kind as to share with us again the plan set in place for you?
Hugs,
MarionThanks again everyone for spending the time to post your replies.
So far, I have not been told that the cancer have spread to the liver.
Hi Jason,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear what you’re going through. But you so did the right thing in coming here as you are definitely in the best place for support and help, and you’ll get a ton of both from everyone here.
Not much I can add to what the others have already said to you, but I just wanted to welcome you here. Please do keep coming back and let us know how everything goes for you. And if we can help in any way just ask and we’ll do what we can for you.
And for sure, certainly seeking these 2nd or 3rd opinions will not do any harm at all, so go for it! You mentioned photodynamic therapy at Mayo, my dad had that as his treatment here in Scotland so if I can help with that if you want more info on it please just ask. And please know as well that we are here for you, stay strong!
Best wishes,
Gavin
Hi Jason!
I don’t have much more too add. Looks like you have got some awesome advice!
Has it spread from your liver? If not, you might want to look into transplant. There are a few good hospitals that will transplant CC patients. I have been on the list for months.
Anyways, your not alone! Hang in there.Dear Holly, tell Jason, go on, you are one of our Super Heros, paving the way to a cure! I like to think of Holly as the little engine that could! So you see, Jason we do have hope here and we do have Miracles!
Hi Jason. The interventional radiologist that works with Dr. Kato at New York Presbyterian is Dr. Sperling and he is awesome. I also adore the surgeon Dr. Faciutto, head of liver transplants and everything liver at Mt. Sinai in nyc. He is just wonderful, so knowledgeable and kind. I have a lot of drs – – you can never get too much info with this disease. At Hopkins, Dr. Azad is a great oncologist also. I am one of those inoperables who went on to have surgery – – not curative but palliative, but I am almost cancer free at the moment and thus have hopes of more quality time with my children. Best of luck. Keep us posted.
Jason, so does Dr. Kato. If you end up in NY there are quite a few Members on here who can help with Lodging for the family and etc. This is a tough decision however, I am sure you will make the right decision for you and that’s when things start rolling and you feel better just knowing something is being done! Best wishes.
Btw, interesting feedbacks that I’m getting from these posts about Dr. Kato of NY Presbyterian Columbia Hospital. I have heard of Dr John Chabot who works at same hospital (same place that Kato works at) that has performed surgeries that no else is willing to do.
Thanks again for the responses, incredible stuff.
It sounds like “targeted therapy combined with chemo” has had some success, going to read more about it.
welcome Jason.
My 44 year old husband was diagnosed with stage 4 CC in march.
We have 4 children and were TOTALLY devastated.because it has spread out of his liver (to the lungs) he will
never be a candidate for surgery…only chemo to “prolong his life”.
(we had 2 opinions–both drs said the same thing–we are being
treated at Huntsman Cancer Institute in SLC, UT–a pretty great place).We just finished our first full round of 2 weeks on and 1 week off
(so 8 weeks total)– next week we do scans to see how he has
responded to chemo (GEM/CIS combo)–igood luck…if you ever want to email either my husband or i, feel free!
Jason, Welcome and sorry you had go find us. I am a CC survivor! I will be cancer free for 4 years on May 24, 2013. I too was stage 4 and inoperable and my only hope was a liver transplant. (I had 2 !!). I have the most amazing story to share and you can read it at http://www.catherinedunnagan.com There is HOPE. I am alive because of God, 2 strangers and Dr. William Chapman. (The amazing part that is exactly how Dr. Chapman would list it)
My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis, MO. I could fill a book about the heart and soul of this man. Dr. Chapman, Dr. Kato and Dr. Javle are some of the main miracle workers for our CC family. They all have been known to change peoples diagnose to give HOPE!
Please feel free to contact me if I can help.
Lots ofprayers and HOPE-CathyHi, Jason,
I agree of what the steps that Rain suggested.
and please remember the treatment plans of cancer is like a triangle that include three arms of the triangle- 1. surgery;2.radiation treatment and 3. oncology treatment.1.You start the 2nd opinion or consult for the possibility of liver surgery first.; and DR. Kato is well known for his skill and willingness to go beyond the tradition boundary to give his best to the patient. anyway he is in New York and is closer than Mayo.(Mayo clinics,in my opinion is more conservative .)
2. At the same time get a 2nd opinion by interventional radiologist to check out the possibility of having RFA,radioembolization,SBRT,TACE etc. that can help you out to extend both the life expectancy and provide you a better quality of life to deal with this disease.(currently interventional radiation plays a big part in treating this disease due to the fast advancement of the equipments , techniques and protocols in recent years). You can schedule this at the same place when you see Dr. Kato to save a trip.
3. Even if you can have surgery done to provide you the only possibility of a cure for this disease;or have the radiation done ;you may still need adjuvant chemotherapy and or targeted therapy to mop up the cancer cells that are still inside your body after surgery. GEMOX+targeted agent like Avastin seem to be a good choice if you have peritoneal “nodules”.But I am not a doctor,like you ,I am just a patient of this disease for 48 months.
Therefore please consult your specialists in that order(1-3).
4. Do not forget to look into clinical trials by using our web sites; surprising results like the NIH TIL trial(immunology) really gives me another angle to look into the treatment of the future.
God bless.Jason,
I am not a specialist however wished to pass on what I have learnt in the short time since my father was diagnosed. I have found helpful to read other people’s approach.
He just started a clinical trial with GEM/CIS and panitumumab.
This is what I did after reading and getting advice from the wonderful people on this site.
I) confirmed with Dr Kato that he was not operable ( to be honest with lymph node metastasis I was rather sure he wasn’t but you don’t wish to leave any stone unturned)
Ii) spoke to a lot of Oncologists and then decided from the gut feeling approach that many discuss above to try the trial with the so called Standard of care GEM/CIS with a targeted therapy. Now please note there is no evidence that such drugs EGRF inhibitors do make any difference however I thought it was worth the try. My father has had a very severe rash from this drug which may not be pleasing to everyone however if it increases our response we wished to try. We have our first scan at the end of May and are hoping for the best result possible.
Iii) despite the fact it is not done in Australia I organized via our Oncologist to get genetic testing done on his sample (caris foundation) so that we have more information. It is not cheap however believe some of the US insurance companies cover this
Iii) I know this may seem crazy but I juice a bitter melon for my dad everyday. Read about this fruit/vegetable in this site.
I note that Tiffany is treated at MD Anderson by Dr Javle and he placed her on another EGFR inhibitor. I would ask your oncologist about this option (there are amazing reports on this website about dr javle and he kindly responded to my email from Australia which I thought was very nice).
In the end believe then idea that you need to look at this like a chronic disease does make you feel better and I truly believe a positive attitude is important.
I wish you all the best for you and your family
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