1 (edited by Tlsinftl Fri, 05 Nov 2010 10:04:00)

Topic: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

I meant to write last week but got busy and didn't get a chance.  So, I am sitting with Ben right now for the second round and thought I would document the experience so far.

Of course we were both extremely anxious about starting, but it has all gone very well.

He started with the anti-nausea medication:  Aloxi - 250mg and Dexameth - 10mg.
Next up was the Gemzar 2000mg then Cisplatin 50mg
Finishing with a hydration combo of Magnesium, Potassium and Manitol

The whole process from start to finish took about six hours, a bit longer then we expected but it was a lot of fluid!  (Ben is a pretty big boy...about six feet and 235 lbs).

Overall, the process was better then we expected (and i do think he was glad he had his port put in).

For the week, he experienced absolutely no nausea, which was definitely good news.  His worst side effect were painful hiccups the day following (that i did write about previously), that ultimately were cured with a teaspoon of sugar and haven't come back.

He did have a little nit of fatigue a couple of days later, but nothing unusual.  He was able to resume normal activities and even went to his gym through the week.  So far - a huge relief for us.

So, today is his second round, they did say it may hit him a bit harder this week but we are still hoping for the best.  The oncologist said all of his blood work was very good and she was thrilled with his lack of side effects. 

Ben also had a PET scan this week, it had been two months since the original MRI and CAT scans so we were both quite anxious on what the PET scan showed.    The doctor said the activity levels from the scan just showed the "noise" in the liver and a bit around the lymph nodes (which is where his had spread), but she said it wasn't overly high.  That was a relief to us....apparently with a PET scan they can't measure the Liver tumor, they just look at the activity radioactively so we can't tell the size of the tumor compared to where it was two months ago (4.5cm), but the doctor was happy with overall activity.

Given what we know about CC, I would say that so far, Ben has been extremely fortunate with his progress.  No problems with his metal stent yet, first round of chemo with no side effects, and it doesn't seem the growth has advanced too much in the past two months, so all good news in my book.

As always, thank you so much to everyone on this board...I don't know what I would do without the information and support.

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Tom,

Glad to hear Ben is off and running as Super Chemo Man. He is lucky to have you by his side.

Patty

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

I guess if Ben is Super Chemo Man, that makes me his sidekick "Anti-Nausea Man" (because i try to keep thngs in balance)!!

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

Thanks for sharing Ben's experiences of his chemo and I know that this will help others that are going through or are about to go through this treament. I am keeping my fingers crossed for the best possible outcome for Ben and I hope that you will continue to let us know how he gets on with it all.

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Sidekick of Chemo Man,

I think maybe you missed my post about the costumes you and Ben should wear to chemo:

http://www.cholangiocarcinoma.org/punbb … hp?id=5087

Although I don't know of any research studies on the effects of cape wearing on chemo outcomes, I think it can't hurt!

Patty

6 (edited by Tlsinftl Fri, 19 Nov 2010 21:09:58)

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

I missed that post Patty..next year for sure!

So, Ben started his second cycle today on the gem/cis combo (so his 3rd treatment).  I almost feel like I should be posting this in the "good news" section, as for now - he still has experienced almost no side effects (except for those hiccups from the first treatment).

The doctors are still quite happy with his blood counts, and he continues to go to the gym almost everyday.  Counting my blessings and hoping things continue this way.  We have some of Bens family coming for Thanksgiving so I hope he still feels good because I will be cooking up a storm.

Take care everyone!

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

THAT MAKES TODAY YET, A GOOD NEWS DAY, TOM. So, what time is Thanksgiving Dinner???? Just kidding, I have 12 here myself, my very favorite Holiday! Have a great Holiday.

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

That's great news to hear Tom.

Wishing you a very happy Thanksgiving. 

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

Thanks for the update on Ben. Great to hear that he is having no side effects bar the hiccups from the first treatment, keeping my fingers crossed that this continues for Ben. Sounds like the party is at yours for thanksgiving and I hope that you all enjoy it!

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Lainy,

Cooking for 12? Sounds like a lot of work. I know this is your fav holiday and that you love to cook for everyone, but how about next year I help you out with the cooking? And I can wash dishes too!!!!

Hugs to you and T,

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Thanks everyone!  And Lainy has me beat by one!  Only eleven at our house for dinner, but I am like Lainey..I love Thanksgiving...I love to cook and Thanksgiving always reminds me of home.

Any of you are welcome at our house if you ever make it to Fort Lauderdale.

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Gavin-you have a deal there. I cook you wash!

Tom- New twist on Thanksgiving. Instead of Turkey with so much waste, and everyone likes white meat, this year I am making 2 turkey breasts and I always make a second entree especially for the Grandkids, and that will be Salisbury Steaks.  I always make the stuffing separate anyway so it all works out fine.
We have a lot to be thankful for....Teddy is still here to enjoy it and Ben is doing fab!

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Ben finished his second cycle of gem/cis yesterday.  We had a busy thanksgiving week with family and friends.  Ben did manage to pick up a cold that led to some bad congestion ( his coughing sounded really bad), but he felt ok.  As a precaution we called the doctor and he took cipro over the weekend.  His blood counts were normal yesterday so they went ahead with the chemo and today he still feels good (but his congestion and cough are still there, just not as bad).

We have heard that sometimes the steroids can cause people insomnia the first night, which Ben hadn't experienced, but last night he didn't go to bed until 4:30 so I guess it finally hit him.  He slept until noon and has been active all day..we shall see how it goes tonight (he is cleaning the garage now and it's 10:15 pm).

Anyway, so I count ourselves as lucky as still no side effects (although he did have another round of hiccups, that disappeared again with the "spoonful of sugar" remedy.  So, luckily nothing exciting to report, just our normal boring lives.  We are going to New York City this weekend to see the Christmas lights and hit a couple broadway shows....so that should be fun.

Doctor appointment for follow-up next week.  Gavin I haven't forgotten about that recent study you found so will be asking the doctor about that and will report back.

Take care everyone...my thoughts are always with 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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Ahh, I remember being up at 3am and cleaning out the cupboard under the kitchen sink. Gotta love those steroids.

"normal boring lives"  - that's wonderful!!!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom and BEn! So happy to hear you had such a wonderful Thanksgiving. If Ben gets bored send him here and I will let him do my house too!  Keep up the good work, you guys and have a wonderful time on Broadway!

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

Thanks for letting us know how Ben is doing after his second cycle of chemo. And it's so good to hear that you had a busy Thanksgiving with friends and family and I hope that you all had a great time! Hope you both have the best time ever in New York, that sounds great to me!

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

How time flies!  I have been so busy with work, visiting friends and family and the holidays I have neglected my postings here so I am going to try to do a better job.

Sitting in chemo right now with Ben.  This will be the end of his third round on the gem/cis combo.  We continue to feel extraordinarily lucky.  While Ben has had some hair loss, he hasn't experienced any other aide effects, no vomiting, no nausea.  We pretty much are living our normal lives....so much so, that today he forgot he even had chemo!  I woke him up to remind him!!  How funny is that!

We met with the doctor last week, and his blood counts continue to be good....the doc said "you couldn't hope to be dong this well".  So, for anyone questioning chemo, there are examples where it's not so bad (at least for now).

Ben will go through one more round (two treatments) and will get another pet scan to see if the chemo is doing anything...sometime in January.  So, for now we continue to count our blessings and looking forward to our first Christmas together in our own home (we usually travel for christmas).  Bens birthday is this Saturday so I will be baking his favorite hazelnut chocolate mousse cake and we will be going to dinner at his favorite restaurant with a few of our closest friends.

Take care everyone!  I will be better about watching the board!  You are all so great and always in my thoughts.

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

Thanks for the update on Ben, and I hope that his chemo today went well. It is great to hear you say that the two of you are pretty much living your normal lives and long may this continue for you both! It sounds like you have a plan for Christmas and I hope that you both enjoy it, and wish Ben a happy birthyday from me for tomorrow.

My best wishes to you both,

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

I'm so glad Ben is doing so well with his Chemo.

Enjoy birthday celebrations and Christmas too, the hazelnut chocolate mousse cake sounds scrummy.

Best wishes

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Tom,

That's great news, keep it coming!

Patty

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Tom.....fantastic news.  I am an hour late on congratulating Ben on his Birthday, but I am sending all my best wishes, nevertheless.  It is my daughter's Birthday also and Ben is the very first person I know of, who is sharing this special day with her.  I hope you enjoyed your dinner and the hazelnut mousse cake sounds absolutely delicious.  Hmmm...would love to have a bite.
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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

I guess it's been a while since I posted an update in this specific section, but I did give an update in the "Good News" section in January where we had found that Ben's primary tumor had shrunk over 20% when it was measured after his fourth round of chemo!

So he's now been through five complete rounds (10 administrations) of the GEM/CIS combo, with the start of his sixth round coming up this Friday, February 11th, 2010. 

All in all, everything is still going well - Ben still has minimal side effects.  His hair is still somewhat thin, but it really hasn't gotten any worse since the first couple of weeks.  Still no nausea.  He is becoming more fatigued and we are finding it is taking him longer to bounce back and feel "normal" again after his chemo sessions.  Early on, he would feel almost normal after the first couple of days, now it seems to take about a week to get back to that "normal" feeling, but I suppose that's to be expected.

He is also experiencing some neuorpathy in his hands - he seems to have a bit less feeling in his finger tips (as he demonstrated to me the other night as he was stabbing his finger with the pointed end of a knife - which I subsequently scolded him for)....so we will continue to watch that.

So for now - everything still going pretty well, just watching the neuropathy and dealing with a little fatigue, he's not going to the gym as much - just resting a bit more a couple of times a day, but he is still quite active around the house (as he was out powerwashing the pavers all around the house the other day), so still thankful about all of that.

That's it for now, I'll be back as we progress.  I don't get on here as often anymore but I do try to stay in touch just in case I can offer any help to anybody....but if anyone has any questions feel free to email me.

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi there Tom & Ben, glad to have the great update. I may rename you guys Superman & Robin. I am hoping for many more updates like this one. Keep up the excellent attitudes and wonderful reports.

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

Thanks for the update on how Ben is doing and looking forward to reading more of them.

Best wishes to you both,

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 Chemo started October 30th, 2010 Gemzar and Cisplatin

Tom...Ben appears to be coming along just fine.  Congratulations on the measurable shrinkage.  The neuroapathy side effects have been discussed often times on this site.  Some had mentioned to wear gloves when touching hot or cold items.  Ben's physician most likely will keep a close eye on this problem.  The good news is that in most cases it will disappear with the end of the treatments.
BTW:  The ASTRO conference will be in Miami in October.  Let me know if you are up to joining me.
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