Topic: Ben's "amazing" scans...

I've been posting Ben's history with CC since being diagnosed in August of 2010 - you can find the history in the Chemotherapy section.

Ben finished the 8 cycle Gemcitibine/Cisplatin protocol in early April, we headed out for vacation and Ben took new scans on April 25th.

Today we got the results from the Doctor - and it was good news!  Ben's original tumor was 7.5cm, after his first four cycles the updated scans had the tumor down about 25%, with the most recent scan the radiologist reported:  "there is very minimal if ANY residual signal abnormality in the left lobe of the liver.  There is trace enhancement".

The doctor said basically right now, there is almost no sign of the original tumor!  AMAZING!  Obviously we were thrilled with the news, and I would say I was quite stunned. 

He did say however, that it's not "cured" since CC at this point is not curable - but at least for now Ben can enjoy some normalcy and time off from Chemotherapy.   He wants to watch it closely so Ben will have another MRI/CT scan in 6-8 weeks....if/when it starts growing again the Dr. said he may likely use the same protocol since he doesn't seem to be showing resistance yet and Ben seems to be tolerating it well.  Only time will tell but it's a relief not needing to think about chemo for a bit.

So meanwhile we will try to take more vacation time - enjoy the jet skis and get some work done on the house.  Ben is going to try to diet a bit to shed some of the 30lbs he gained during chemo (hmmm...what will he do without the steriods excuse now)...  I'll try to be a better member of the board as well between work and hopefully having some fun.

Thanks to everyone for all of your continued support, your always on my mind.

tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Ben's "amazing" scans...

Tom, I am over the moon with your great news!!! Question...now that the tumor is under 7cm would the doctor consider Cyber Knife on it? You guys are some kind of dynamic duo. Keep that good news coming and enjoy your free months ahead. YIPPEE

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: Ben's "amazing" scans...

Tom - Wonderful news!

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

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Hey Lainy - since Ben's original diagnosis was at Stage IV with metastis to from the Liver to the omentum (lining of the stomach), both MD Anderson and Mayo Clinic said he isn't a candidate for surgery.  So, for now - just the shrinkage to almost "non-existent" is the best news we could have hoped for...now I guess it's just a waiting game.

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

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Ah.  Tom...life is a waiting game. Wait until you are my age. Everyone over 65 is in a hurry to go nowhere! I am in an adult community and OMG, there will be no one driving behind you and they pull out of a street in front of you...can't wait. They won't go to the fast check out lane but always want you to let them in front of you for their few items at the Market. If there is a line at a restaurant they try to skip in front. If you don't take it all with a laugh you will never survive. I call our community....God's little waiting room. smile:) But, mid you, these things don't pertain to me, not much!

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: Ben's "amazing" scans...

Hi Tom,

This is great news indeed!! Thank you for sharing it with us all and I am so happy for you both. Time for you both to start planning more vacations and all of the jobs around the house!

As to Cyberknife, it is a non invasive procedure. Before Ben started his chemo, did the doctors talk about radiotherapy being one one of his possible treatment options? The reason I ask is that my dad had radiotherapy ruled out from the start so Cyberknife would not have been a possibility for him. Here is a link on it.

http://en.wikipedia.org/wiki/Cyberknife

My best wishes to you and Ben,

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: Ben's "amazing" scans...

Always awesome to hear some good news on this site.  My Tom also got some good news today.  It appears that his inoperable tumor is also shrinking and the interventional radiologist is going to try to get a stent in next month!

I hope you and Ben enjoy those Jet Ski's (but be careful!) and here's to continued good news!

Go with God and KEEP KICKIN' THAT cancer.

Margaret

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AWESOME NEWS!!!!!

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YES YES YES : ))))!!! Not curable? Let

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

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Hi Tom,  Great news! We all love hearing good news stories, brings hope to us all. Go enjoy those jet skis and sunshine. Nancy

Loving my husband from afar.

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That is GREAT news Tom! My dad is just on his second cycle of gemcitabine and Cisplatin.I am praying his results will be as good! Enjoy your time together and enjoy life one day at a time! Kathy

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Thanks everyone for your support, Margaret great news on your Tom as well and Kathy I am hoping for the best for your Dad.

Gavin regarding your question on Cyberknife, since Ben is at stage iv my understanding is the only protocol is really systemic treatment with chemotherapy, etc. Since they don't know where else the cancer is lurking once it's metastasized so they won't just treat specific tumors.  If anyone has heard of other treatments at stage iv I would be very interested.

Tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Ben's "amazing" scans...

I'm taking advantage of the three day weekend to get caught up on some much needed "homework" including updating the CC board (I still lurk out here once in a while).

Ben had his one month checkup at the Oncologist following the good news he received at the end of April (tumor basically shrunk and mostly disappeared). 

The doctors appointment went well as we expected.  Ben has pretty much returned to all normal activities (although he still can't get motivated for the gym, but that's just usual procastination).  Ben will get a new MRI scan of his liver on July 1st, so we have 5 more weeks of NO doctors, NO chemo and NO hospitals!!!

So the GOOD NEWS is there is nothing new to report - and I'll take that!

tom

p.s. - Gavin, as of now it does look like I will be back in Edinburgh in July (July 8th), I will keep you posted but definitely plan to seek you out and meet you!

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

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Hi, Tom & Ben. What fantastic news on a Memorial Day. It jut doesn't get any better than that! Like I said before you guys are a dynamic duo and you know I am wishing you the very best! smile:)

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: Ben's "amazing" scans...

Wow and hurray.... The upcoming 5 weeks are a welcome reprieve from the appointments and treatments (and side effects.)  Good news doesn't get much better.  Enjoy.
Congratulations.
All my best wishes,
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: Ben's "amazing" scans...

Hi Tom,

Great to hear from you again, and thanks as well for letting us know how Ben is doing. Sounds like he is doing great right now and that is great to hear! No doctors, no chemo and no hospitals, yep, that is good news indeed! Now, if Ben can get motivated for the gym then please let me know what does it for him as I could do with some of that motivation myself!! That is great to hear that you will be back over my way on the 8th of July and hopefully we will be able to catch up. My mum is not too well right now but hopefully we can still meet up in July and just drop me a line anytime.

My best wishes to you and Ben,

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: Ben's "amazing" scans...

I'm back - AGAIN!  It's so incredible to be giving another update in this GOOD NEWS section!  I'm still lurking around out here but haven't been posting much I've been so busy!

Just a little reminder - Ben was diagnosed last August 30th with Stage IV Intrahepatic CC - with mets to the lymph nodes and Omentum, which meant he was inoperable.  He started chemotherapy in November and finished all eight of his Gem/Cis cycles in April.    Mid-way through Chemotherapy treatments a scan was performed and his tumors had shrunk by about 25%. 
Six weeks after his chemo ended - he got another scan and the primary tumor in his liver could not be detected!!!  So, that's where we left things at the end of April - HURRAY!!!

So, moving right along - we pretty much lived our normal lives over the next 7 weeks until it was time for a new scan....which of course we all know those and the dread that leads up to the waiting of the results.

Ben had his new scan on June 27th and we received the results yesterday - July 1st and the radiologist report still showed NO signs of the cancer.  WOW!!!!  Are you kidding me?  Obviously we were both elated since we all know what can happen with this cancer.

Our oncologist said he would now probably wait 2-3 more months before he does another scan but he will see Ben in a month and decide then.  So - now it looks like we are going to have a "chemo-free" summer!  Ben still feels really good and normal so we are going to enjoy life as best we can until the next dreaded scan.

So, at this point almost 11 months since diagnosis with inoperable, terminal CC - and given 6-18 months to live, Ben has survived all of his chemo treatments and right now is living proof that it doesn't all have to go down hill so quickly.  We both realize that it is likely to return and the doctor is obviously not saying he is "cured".  But at least for now both of us feel he is in a very different place right now then we were expecting. 

NO pain, NO side effects, NO cancer (at least for now)!  We never would have believed it!!!  So, there is hope to everyone I think.....who knows maybe a cure will be found while his is stabilized.

Thank you to this amazing board for the information and support you provide.  It's invaluable and I continue to think of everyone often.  I do find it difficult to keep up out here given my schedule - but anyone is free to email me using the email "click" at the left for anything.

Tom

p.s. - Gavin - I will send you an email separately...since Ben had such a good outcome I am still planning on coming to Europe on July 5th and will be in Edinburgh on July 10th.  Maybe we can get together depending on our schedules and your Mum's health.

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Ben's "amazing" scans...

Tom and Ben.......I said you were the dynamic duo and thank goodness you have proved me right, again! This is incredible news. What can I say? You are one of a few who can render me speechless. Enjoy your summer, enjoy your life, enjoy each other and next time I pray for you to give me more good news!

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: Ben's "amazing" scans...

Tom and Ben.......Here we go....another incredible success story.  Enjoy, enjoy.  Of coure, I expect your next posting to appear right here....at the good news section.
All my best wishes,
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: Ben's "amazing" scans...

Fantastic news Tom and Ben,

I'm amazed, hope the doctors are studying Ben and learning from him!  So pleased for you both to have a chemo free summer.

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Hi Tom and Ben,

Wow! More great news, I love hearing that news!! And thank you so much for sharing this amazing news here. Sounds like you guys will be having a great summer and I am sure that you will both enjoy it! Sure Tom, drop me an email and we will see if we can meet up whilst you are over here, let's hope so.

My best wishes to you and Ben,

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: Ben's "amazing" scans...

Hi Tom and Ben, Love to hear this kind of success story! So glad you are both doing so well. Enjoy your stress free summer! Nancy

Loving my husband from afar.

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That is such Great news!! Enjoy your vacation!!!

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Fabulous fabulous news!!  Enjoy life, enjoy vacation!

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Ben's "amazing" scans...

What wonderful news! Thanks so much for posting it means a great deal for all of us to hear good things! Have a terrific summer and keep the good news coming!