Re: Update on Ben

Tom......This is beyond wonderful news to share with us. Cholangiocarcinoma in remission - it feels good and sounds great. Add the defeated Lymphoma and this is one of the most exciting success stories yet. Congratulations to you both.  The remodel to your home could not have come at a better time - enjoy.
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: Update on Ben

Wow! That is brilliant news Tom, and that is an understatement from me to say the least! Congratulations and time me thinks to celebrate big time!

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: Update on Ben

Fantastic news for sure!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Update on Ben

Wow, what great news Tom and Ben!!  Just amazing.  As a multiple cancer survivor myself, I know the emotional toll it can take, although I never had them at the same time. 

Enjoy the summer and the glow of this great good news!
-Randi-

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: Update on Ben

Thanks everyone - it really is amazing, but realize we never know where the journey ends.  And, when we finish this remodel (hopefully November) if any of you are in the fort lauderdale area you MUST come to our party.

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: Update on Ben

After another "dry spell", here I am back with another post on the CC board.  Unfortunately, Ben's good ride had had been enjoying now has a few bumps in it. 

Just a reminder - after battling Stage IV CC for three years, Ben was diagnosed with Lymphoma in January.  His chemo regimen switched to a different protocol to clear that up first as it was quite agressive (but at least curable).

At the end of June - chemo was done and PET scans showed no signs of Lymphoma - and they couldn't really see the CC (although PET scans don't show CC as well as CT scans).

Ben was "chemo free" for the summer which was a nice break and allowed us to focus on a few other things for a change (a little travel and the remodel of our house).

On October 7th we returned to MD Anderson in Houston for a quarterly checkup.  Their PET scan revealed that the Lymphoma is still gone (they consider that in remission), but it did show some lesions in the liver again - which they assumed is CC.  They did a biopsy of the liver just to make sure it was CC vs. Lymphoma - and the test came back positive. 

A couple weeks before heading to MD - Ben was complaining of digestion problems and a bit of stomach pain (so we were a little suspicious, but hoping it was nothing).

It turns out the new lesions were once again blocking his bile duct and he started to turn Jaundice (it's amazing how quickly that can come on - really started while at MD Anderson and got worse over the next few days).  Luckily the doctors at MD were able to put another metal stent into the biliary tract to open up the bile duct again. 

While we were certainly discouraged about the news - the doctors were still positive.  They said they would have been surprised not to see any growth because Ben had been off Gemcitibine since last December - so it had been almost 10 months for the CC chemo (since the treatment for Lymphoma doesn't work on CC).   The GI Oncologist at MD (Dr. Shroff) said she wasn't nervous about what she saw....and since Ben has always responded to chemo well - she was hoping it would be the same.

We have since returned from MD - Ben has a plastic stent in his Pancreas that has to come out next week (this was temporary to prevent pancreatitis from the procedure to put in the metal stent).  Chemo will start again on November 1st.  The doctors have recommended that he only take the GEM (vs the GEM/Cisplatin combo) as it's easier to tolerate then the combination and they consider GEM as the "workhorse of the two.

Ben's spirits certainly don't seem to be the same - and while his jaundice is gone, he does still have some stomach pain - and he just hasn't felt that great since returning (I'm sure the combination of both the physical and mental toll of it all).

So, not the best situation - but certainly could be worse given the circumstances.  We are both pragmatic enough that we didn't think CC would be gone permanently through Chemotherapy (as I've never read a case where that has happened), but we were hoping it would stay away a little longer to at least get through a holiday season without chemo. 

I'm a little worried this time - how long can the body take chemo?  But - luckily Ben is a strong man and hoping he endures it as well this time as he always has.

All my best to all of you.

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: Update on Ben

Dear Tom, so good to see you, thought I was going to have to bring out the wet noodles for another lashing! On one hand I am sorry about the return of the monster but on the other hand like you said it could have been much worse and where there are options for treatment that is always a good sign. When you go back to MD to have the tube removed perhaps you could mention to Ben's ONC about the stomach pain continuing or put a call in to her. Did they not say anything about that on your visit?  I am so happy that you guys had such a wonderful summer. Wishing for the Chemo to be an easier ride and you will receive a Holiday gift of 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: Update on Ben

Tom,

I'm sorry to hear that Ben is back on the down side of the roller coaster of CC.  He's been through a lot but as you said he's strong and that means a lot when it comes to treatment.

I was diagnosed in August 2011 and have been on a few different chemos along with traditional radiation and then SBRT.  Since July,  I've been on Paclitaxel and it's keeping my tumors stable.  I started SBRT the beginning of May.  The plan was five treatments of SBRT and then chemo.  I became jaundiced right before starting SBRT but they let me complete it before putting a metal stent in the bile duct in my liver the end of May.  My bilirubin was 22 and they said I wouldn't be able to do chemo if they couldn't get the bili down to single digits.  Thankfully, the stent worked and my bili is actually in the normal range since June.  As I said, I started the Paclitaxel in July and am still on it and doing well.  The reason for my telling you this is because I felt lousy and not strong enough to handle more chemo.  I had a really rough time from May to July with numerous fevers and infections which meant a number of hospital stays.  I seriously considered not doing the chemo.  I was that weak.  But I did it and I'm feeling so good now with just some minor bowel issues due to pain medication.  I'm so glad I did it and that my body was able to handle it. 

I hope Ben will do well also and come back to the up side of the CC roller coaster.  As you said, he's strong so I feel positive that things will turn around for him.

Take care and stay strong!

Peace, Love & Hugs,
Mary

Re: Update on Ben

Tom -
I am a later comer to your story and I can say it has been a roller coaster ride for you and Ben. Not have one but two cancers is scary. And here I felt sorry for myself when they diagnosed my husband with CC and the same day my youngest son with thyroid cancer. It was rough for a few weeks but my son is cancer free.....not say that we aren't still on the roller coaster ride of CC.

Sending many good thoughts your way.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.