Re: Update on Ben

Dear Tom and Ben, I am so very happy you got to make that trip. I had my Dolphin all set to go and rescue you guys if needed but as usual you both handled it all like ROCK Stars. Meaning you are Stars in my book and you guys just rock! I know Ben will fight this new crap just as he has done in the past. Hoping he gets to feeling better as he gets used to his chemo cocktail again.  Thank you so much for checking in with us, you know I get worried if I don't hear from 2 of my favorite guys. Hugs to you both.

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

So - here I am again...back so soon! 

Unfortunately, not even two hours after my update on here last night Ben came down with another very high fever (102.9) - so off we went to the emergency room again.  As of this writing they still haven't found anything - his liver panel is higher (bilirubin 2.9) but CT scan, blood work, etc. aren't finding anything conclusive.

So, now this is the 3rd time since the end of May that Ben has experienced a high fever, not quite sure what to think of all of it...luckily they can get the fever down pretty quickly and antibiotics seem to work (along with that new stent in May), guess we will wait and see.

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Tom, that is how Teddy's infections would start. They need to do a blood culture which can take a few days to get results and the ONC and ER knew this as it was in his records to start him on an IV of Levaquin anyway as his ONC always said Levaquin will kill anything. Also if his last stent exchange was in May that could be the problem. Perhaps a new one is needed. Best of luck!!!

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 agree with Lainy and assume that the blood culture was done.  And, given the time of stent replacement and assuming that Ben has a plastic stent it is very likely that the infection is due to the clogging of the stent especially given the fact that his cancer is active again.  Plastic stents last anywhere from 3 weeks to 3 months (minus a few exceptions.)  Please stay in touch and a tidal wave of good wishes are heading your way. 
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

Yes, a blood and urine culture were done.  They said he has a bacterial infection :  gram negative rods.  Still not exactly sure what that is but could either be from a port infection or could have been a small amount of bile that got stuck in the stent and caused an infection.  He's still on antibiotics and they added Ursodiol to thin his bile. 

As for the stents, he has only metal stents, no plastic so they can't be replaced, but they did a HIDA scan today (a new term I had not heard of before), where they inject him with dye and watch it go through the bile duct and everything looks ok.

So, now we just wait for the antibiotics to do their job.

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

I sure don't care for that mantra, "get scared....WAIT" but it seems this CC is only for the strong and patient, I am sure the antibiotics will take care of it. Tell Ben I said that's enough attention getting! LOL

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.....is Ben taking an oral antibiotic and what type?
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

Marion, all IV administered antibiotics right now.  He's on two:  1) Zosin every 6 hours and 2) vancomycin.

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Great news, Tom.  They are blasting him via IV.  Has fever come down?

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

Yes his fever is gone which is good news.  Just waiting for the antibiotics tondo their work!  And you are right Lainy...I think Ben just does it for the attention!

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

So - here I am again exactly one month from my last post and I think I must be in Groundhog Day.  Ben recovered pretty well from his last infection and restarted chemotherapy on 8/26 (GEM/CIS).  All was going well until this past Wednesday - 9/3 when he started getting a fever again, it started as a low grade fever in the morning and his Oncologist ordered blood tests and Leveaquin to try to get ahead of it without sending him to the hospital.

Unfortunately, the fever elevated quickly that day and a few hours later he had spiked to 103.9 - yikes!  So, obviously off we went to the ER (at least this time it was 4:30 in the afternoon vs. his usual 11:00 PM at night).  Anyway, once again he was admitted and the fever was brought under control relatively quickly and he's being treated with broad spectrum antibiotics (Vancomycin and Merrem).

For an added twist Ben through in some low platelets.  On Tuesday at his checkup with the dr. his platelets were 89,000 - by Thursday they had dropped to 29,000!  So, they did a blood transfusion (well I call it an "infusion"....as they just gave him blood - didn't take any out).

As of today (Friday 9/5) his platelets are on their way back up and he looks good.  Doctors are still trying to determine the source of these infections.  He had an MRI this afternoon and the GI doctor noticed what could be an abcess on his Liver.  He notice a pretty significant "growth" there - and he said there is no way it could be tumor because it wouldn't have grown that big in a month, so he was pretty sure it was an abcess and was going to have a CT scan and have the radiologist attempt to drain it.

So - more twists in turns in the road.  I'm a bit concerned because this will once again delay chemotherapy, and he really needs to get on a consistent path for that to keep things under control.

I'm off to investigate liver abcess on the board.  (this board is still such an amazing source of information)!

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Dear Tom, I don't get it. You travel to Alaska and all was fine, Ben comes home and bada bing bada boom, he lands back in the Hospital. His ONC is just like Teddy's was and I love that.  Hoping that Ben recovers quickly and can continue his Chemo. Please let us know how his CT goes. You know I am wishing you guys 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.

Re: Update on Ben

Tom......abscesses are not unusual with this diseases.  You are so right by reading up the individual postings on this subject - tons of information here -.  Please keep us posted and hang in there, but then we already know that you and Ben will do just that .
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

Hi Tom,

Thanks for the update on Ben. Hope Alaska was good and grrrr to abcesses, big grrrr in fact! Hope that the med team get to the bottom of this and get it dealt with asap. Let us know how Ben gets on with this and yes, another bump in the road but I know that you guys will be able to deal with this!

My best 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: Update on Ben

So, Ben had a procedure today to drain the abscess on his liver.   HIs GI doctor was surprised because he is draining bile vs. pus and he wasn't sure why that is happening.  Tomorrow, they are going to inject dye in him to see if there is a backup somewhere....the last they looked it didn't appear his stents were blocked, and his bilirubin has been low(ish), around 2.8.  He said they may put in another stent, plastic this time....he said if he has to keep going in he might as well use plastic.  Up until this year Ben has had good luck with his metal stents, but I guess after 4 years (wow, hard to believe it's been 4 years), I guess they are bound to have some issues.

I did some searches of liver abscesses and i do realize they are common, but couldn't quite tell if anyone had bile come out vs. pus. 

I'm also supposed to go home for a family wedding on Thursday.  I haven't  been home in two years and I'm feeling guilty if I decide to go (Ben's sister in law is staying with us in case I decide to go....and she is insisting I get away).....but I just don't know.

Another day of fun

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Dear Tom, yikes, I have never heard of that kind of drainage before but plastic stents sound like a good plan as they are easily changeable. Teddy had to have his exchanged every 2 months or so to keep them from getting infected. To go or not to go......to a wedding. As long as Ben is doing OK and someone is there why should you not go for a few days. You have to be kind to Tom too. But you have to make that decision. Hope they can find out where that 'muck' is coming from. Love to Ben!

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

Dear Tom and Ben, Just read through all 6 pages of your posts and will include you both on my prayer list. I know it is trite to say, "Stay strong", but you have so many people pulling for you. Sounds like you're getting good care. I agree with Lainy, although it is definitely your decision to attend the wedding, I would advise you to go. Ben's sis in law will, I'm sure, take great care of him and will let you know if there is anything to bring you home. Caregivers really do need some time away to recharge and be ready to face the next chapter.
Positive energy and healing thoughts to you both.
Melinda

Re: Update on Ben

Tom.....We have had some incredible stories related to the surgical re-routing of the biliary system.  Although (generally) not anticipated leakages occur with some and yet not other patients.   A surgeon once mentioned:  I will do the best possible  and await the patient's response to the surgery.  Guess, Ben is responding in his own way.
Please let us know the outcome and please, please consider attending the family wedding minus the guilty feeling.  You deserve a break too.
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

Tom,  The decision to go or not is a tough one, but Ben will be in good hands if you go.  IMO, I think the time away will bring you back home to Ben more refreshed.  That is a win-win for both of you.  If you do go....plan to go and enjoy.  Take a lot of pictures to bring back and share with Ben too.  It's good to have something fun and upbeat like a wedding about which to talk. 

Julie T.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Update on Ben

Thanks everyone for your advice.  I am sitting on the plane right now heading for home.  It was a very difficulty decision to leave as Ben is still in the hospital.  He now has fluid in his right lung that they plan to drain, and he still may  need an ERCP to put another stent in, but remarkably he looks good and I do have a lot of support for him while I'm gone.

Melinda, I can't believe you read through all six pages (I tend to write a lot when I am out here, just not very frequently).  Marion, I'm trying to let go oft he guilt....I do know it's good for me and if anything happens I just have to jump on a plane and come back.

Julie, I'm headed your way....I'm originally from Sioux City, Iowa and that's where I am going so I will wave as I pass over you there in Marion.

Thanks everyone for all your support.

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Dear Tom good decision and have a great time. A Caregiver needs a break now and then and I am very proud of you! But please enjoy!!! Safe Travel too.

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 glad you made this decision.  I know it was a hard thing to do, but you do need and deserve a little time for you.  I'm sure that  Ben will be well taken care of in your absence.  Safe travels and  enjoy.   Both you & Ben are in my thoughts.

Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on Ben

Tom, I think you and Ben have touched the hearts of many people fighting the good fight, or supporting those who are currently faced with the cc challenge. Enjoy every minute of your stay at home. Your decision took a lot of courage but I think it was definitely the right one. Peace...love...hope.
Melinda

Re: Update on Ben

Hi Tom,

You def need a break and I so know what you mean about the guilt thing. Try not to feel too guilty if you can as I know that up till now you have done an amazing job here! And as you say, if need be you can always jump back on the plane again.

My best 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: Update on Ben

Tom....I'm very proud of you for making the decision.  It was yours to make...but I know it was difficult.  As the "patient" in my relationship with my husband, my "caretaker", I have been encouraging him to go off for his bike rides or other activities....when I was sitting in my recliner , out of it from the latest chemo.  I knew that I just had to sleep it off....and him being here wasn't going to change anything.  He needed some time to himself.....or with his friends with whom he goes to lunch a couple days a week.  In short, he needed breaks from ME....from the intensity of the situation and he has always come back looking a little more refreshed. 

I don't know when your flight went over eastern Iowa.....but I am giving a little wave.  smile   I have relatives up by Emmetsburg, so am familiar with the area to some extent.  Enjoy your family and visit.....and the wedding.....without guilt.  Go with love in your heart.....and know that by going, you will return to Ben, clearer headed and refreshed.  It will be good for both of you. 

Julie T.
Iowa Girl

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)