Re: New to the Site

Thanks for that Lainy, we can always rely on you!!

Jeff, I had a look through all of your posts and threads and could not find a thread which Ilias posted on. Did you mean Eli from Canada instead of Ilias? I know that Eli helped you out a lot on this thread of yours here -

http://www.cholangiocarcinoma.org/punbb … hp?id=7941

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: New to the Site

Hi Lainy,

hope you are well.  I think Jeff is referring to Eli..Both Eli and I have the same name.

Ilias
My mother, my hero

Re: New to the Site

Ilias, many thanks. So, in Australia Eli is Ilias? No matter how it is spelled or said or where they live, Eli's/Ilias's seem to pretty wonderful people!

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: New to the Site

Well - it's been quite the few days.  When last we saw our hero Dave he had begun his first round of FUDR (internal pump chemo) last Monday.  Monday Tuesday and Wednesday he felt amazing, the best he had felt since the CC was originally diagnosed, and eating up a storm.  That turned 180 degrees Thursday, Friday, and Saturday - he felt lousy, completely lost appetite or interest in eating, and started feeling a lot of lower back pain.  Keep feeling like one step forward and 2 steps back.   He is never ever the complainer but finally he agreed to let me take him to MSKCC as he had a lot of swelling around the pump and redness (both on the list of things to look out for).  His bloods showed his white blood cell count was elevated (13,000 as opposed to 11,000).  They called in Dr. Fong's Fellow who drained some (about 170 cc!!) fluid from the pocket around the pump.
She ordered a CT to eliminate Kidney stones.  They were pretty backed up in Radiology, and the Fellow appeared to have left for the night so we were sent home around 1AM.  We stopped at an all night diner (with all the clubbers and trannies calling it a night) and had eggs and fries :-)
We were awakened Sunday morning by a call from the covering Chief Resident who had seen the chart and had met with a Radiologist to review the CT.  Even though the requested CT was only of the abdomen and surrounding area they could see a little of the bottom of the lungs in the film and there was clearly a blood clot - a great catch by the Radiologist.  They wanted us to rush right in as they diagnosed the clot as well as a pulmonary embolism.  They admitted Dave as soon as we got there because they wanted to do another CT to see the upper torso and they wanted to get him on blood thinners asap.  Unfortunately we would have to wait until Monday for another CT since you can't do the contrast again for at least 24 hours (kidney damage).  Basically they admitted him and administered heparin, took bloods, BP, temp etc.
Monday morning Dr. Fong was in bright and early and told us blood clots are common for cancer patients and we'd be around for at least a couple of days. He also was concerned as he suspected there were probably additional clots in his legs.  They plan to move Dave from I.V. Heparin to shots we can administer at home.  Dr. Fong said he had a "good feeling" about the chemo and had his fingers crossed.  CT will be done on Tuesday.
So glad we are so close by and as much as I love having Dave home, we feel blessed that he is in the hospital, being closely monitored and in such good hands.  Never a dull moment.

Re: New to the Site

Sandy, so what do you do for excitement!!  I see this as a blessing or they would not have found the blood clots! You sure are in the right place. I love the way you describe it all and glad our Hero is on the mend, again. I would compare Dave to the Timex watch. Takes a licking and keeps on ticking! Wishing the best for you both and hope he is home soon. You know, a guy can get used to that Resort stuff!

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: New to the Site

Sandy....great outcome of an not unusual occurrence.  I have learned that cancer activates the clotting system.  We have seen it frequently on this site in fact, biliary cancer clots are names after Dr. Trousseau:  Here is a link: 
http://en.wikipedia.org/wiki/Trousseau_ … malignancy
Good to know that Dave is back home and is watched closely by his wonderful, supportive wife and a great medical team. 
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: New to the Site

So, this is what we have been up to since last I wrote.
Last Saturday we went to MSKCC Urgent Care as Dave was feeling really awful. They did a CT Scan and sent us home in the early morning hours.
Very early Sunday morning we were called to come back in.  They found a pulmonary embolism is Dave's lung and decided to admit him to the hospital.  We were there Sunday through Wednesday. They did another CT late Monday to see the upper chest area.  They put him on blood thinners to prevent additional clots.  The Celebrex appeared to take care of his daily temperature spikes, but he continues to have outrageous drenching night sweats.  Wednesday just prior to his release they drained the FUDR  (this was Round One) from his pump as they were concerned with the spike in his liver enzymes.  This was a big shock to us as we viewed it as a setback - only 9 days with chemo in the pump instead of the planned 14 day cycle.
He also is starting to experience shortness of breath and is tired all the time but still sleeping poorly.  I wish he had a good hobby - the days and nights seem so endless.
Today we are back at MSKCC for our regular 2 week visit to Dr. Kemeny.  She said she was very concerned - the large tumor was unchanged in size but one of the small ones on the opposite side of the liver had grown quite a bit and she was concerned it was not responding to the chemo. so she switched the plan for today's first round of systemic chemo to a 2 drug plan - first Gemcitabine followed by Oxaliplatin.
Watching the drips now, a couple more hours to go.  Keeping my fingers crossed for better results!!

Re: New to the Site

Sandy, I am so sorry to hear of these ups and downs, as if you all don't have enough to contend with! I sure hope this new chemo cocktail works better!
Hobby, Hobby. Are there some quiet things he liked to do before CC.  I will think about this one. Sending best wishes and for goodness sake please get off that roller coaster! Thinking of you with care and concern.

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: New to the Site

Sandy,
Sorry to hear all of this! I love Dr. Fong! I miss him, but not enough to go back to NYC.
I had night sweats from day 1 of chemo! They lasted about a month or so. I finally figured out a short cut: I laid down on a sheet and wrapped it around me. When I woke up drenched, I tossed the sheet aside, toweled off and got into a nice dry bed without all the hassle of remaking it!
Dr. K is brilliant: not my cup of tea, but she was one of the first to use oxaliplatin instead of cisplatin, I think. It's not as hard on the body, and I think the results are proving to be as good or better!
Now, for practical purposes... Get the gloves and scarves out: he's gonna need them. And socks. No touching anything out of a freezer for at least the next few days! And I hope Dave can get used to drinking room temperature drinks: I did! The oxy affects the nerve endings and you can't handle cold. Even in the supermarket. Even getting eggs out of the fridge. It's annoying, but manageable.
I live alone, and learned to put gloves on to get food out, then set it on the counter until it warmed up a little. It sure beats the alternative!
Now to watch those pesky Tumors shrink!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the Site

Kris....we are so fortunate to have you sharing your first hand experience with the pump.   Thanks a million.
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: New to the Site

Sandy....hang in there. 
Thinking of you and sending tons of hugs your way.
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: New to the Site

Thanks Kris, Lainy and Marion and all of you who have responded and have been so patient with me and so full of care, concern, wisdom, support and fight!!
Each day seems to bring a new challenge with it- the sleepless nights, the night sweats, the loss of appetite, the shortness of breath was a new addition, the constipation from the pain meds and all the usual stuff - today is the first day of the reaction to cold that Chris predicted but also the first day Dave just can't get out of bed at all as he is so exhausted. At least he appears to sleep on and off.

Re: New to the Site

SO we had our 3rd appointment today with Dr Kemeny.   Full of anticipation! We got there 30 minutes ahead of the 11:15AM appointment as they request (I suppose to take bloods etc).  We finally saw her around 1:30PM (they said she was running late).  She informed us Dave would be getting a 50% strength dose of FUDR and a second round of the Systemic Chemo.  Of course it took a while to prepare the cocktails so we sat,  went out and had lunch, came back and sat and sat.  Finally at 6PM the chemo was delivered and we were brought into the Suite to begin the 3 1/2 hour ordeal. 
Dave had lost 15 pounds since the last appointment exactly 2 weeks ago so they reduced his self-administered blood thinning injections from 2 a day to one as they are based on body weight, and took him off the Lisinopril he had been taking for high blood pressure as he was now around 106 /60.
Also took him off the diuretics as he was so dried out and dehydrated  they couldn't even get the IV into him to administer the chemo until they wrapped his arms in hot towels for 15 minutes.
After a total off 11 hours there he got home exhausted and glad just to be able to lie down in bed and be comfortable.
Waiting to see what this round brings.

Re: New to the Site

Wow, Sandy, what an ordeal! It is beyond me how they think Dave can sit around all day. I bet when you got home that bed looked amazing to him. Would be nice tomorrow if you could sleep in and then be served breakfast in bed!

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: New to the Site

Thanks so much Lainy - you are always the best!! 
Actually he watched the end of the Yankee game first - fortunately they won - and then crashed big time.
Sadly I have to head to Atlanta tomorrow for business, but our daughter will be home after work to be with him.
Breakfast in bed sure does sound nice though!

Re: New to the Site

Im sorry Dave had such a long day! That's unbelievable... 4 hours waiting to start chemo? I would have been yelling! It doesn't take THAT long! I can understand a couple of hours, but 4???
I just hope that things will start going more smoothly.
And I hope he starts feeling better.
Call me if you need to.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the Site

has anyone heard of Andrew dela Torre
http://www.njlivercare.org/specialist/s … Torre.html

he was recommended by someone as doing advanced clinical trials in advanced stage Liver Cancers?

any/all insight gratefully accepted
Thanks as always for the help, love and support!

Re: New to the Site

Hi Sandy,

Never heard of him before so had a quick look around and found a few links.

http://njms.rutgers.edu/resource_locato … b-clinical

http://www.njliversurgery.com/

http://www.njliversurgery.com/credentia … ntial.html

http://www.njliversurgery.com/credentia … ntial.html

http://www.linkedin.com/in/njliversurgeon

Did a search here on the site as well Sandy and there are no posts or mentions of him here. Hopefully others may have some thoughts or info for you.

Best wishes,

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: New to the Site

Though I haven't posted in awhile, I check in very frequently, mostly daily, and read each and every one of your posts and updates with great interest, caring, excitement for the good news, and heartfelt pain for the disappointments.  I still know so dreadfully little about this horrible disease (to paraphrase Lainy, writing its' name would give it too much credit),  and still feel so overwhelmed by the diagnoses, side effects, options available.

Dave had his pump installed on June 24th.  He began Chemo in July with FUDR being administered directly via the Pump , alternating every 2 weeks with an off cycle of steroids and nutrients.  In addition he was getting systemic chemo every 2 weeks -Gem/Oxy.
He had his first follow up scan in October at which time Dr Fong did the greatest happy dance ever as he delivered the news that the tumor on the Right side of Dave's liver had shrunk from 14cmX9cm to 9cmX5cm, a reduction of close to 70%.  He was beyond thrilled and confirmed we would continue the regimen we were on and meet again in January to reevaluate.  He continued to hope that removing the tumor at that point would be a possibility, but restated that would be dependent on shrinkage at that point as well as evidence of spread to the other side.
After losing close to 35 pounds, feeling exhausted, winded, barely able to 
get out of bed for all of July and August, all of a sudden in September it was as though a switch had been flipped and he said he felt as good as he had ever felt!  His energy was back and much of the weight crept back on.
Then the last 3 weeks he was feeling worse and worse by the day.  Tired, winded, constant pain even though he was taking Oxycontin regularly, running daily fevers around 100.1 to 101.0 and just all around lousy.  When he went in for his bloods this past Monday and appointment with Dr. Kemeny all his bloods were still very good, all within range, with the exception of slightly elevated White Blood cell count.  Dr Kemeny was concerned that with the elevated count in conjunction with how he was feeling he had an infection so she cancelled chemo for the day and sent him for a Scan.
When we returned Wednesday for the results, Dr Kemeny was as somber as I had ever seen her (guys- those of you who have been treated by her and have written here about her - this was DIFFERENT) - she sat with us for a long time.  She was beyond shocked to have found a second NEW tumor of good size in the liver and a lesion on the bone on his lowest left rib.  She prescribed a PET Scan next week, and an appointment with a Radiologist December 18th to begin Radiation treatment.
We did our chemo that day  (the FUDR plus the Gem/Oxy)plus she added an injection to treat the bone as well as a prescription for Xeloda complete with all the warnings that seem to accompany that drug.
She wanted to double the FUDR but decided to hold off until next round just to minimize introducing too many variables all at once.
As you can imagine this news was a devastating setback - we completely were prepared that at some point the Chemo would stop working but were completely unprepared for all this at this stage.
This is where we are at - Dave is destroyed and I have no idea what to think or what I need to do.  Any/all wisdom or feedback gratefully appreciated

Re: New to the Site

Oh Sandy, Like Dr. Fong I was jumping and dancing for joy and then you come in with "the rest of the story". I spell cancer KRAP! I am so sorry and on this matter I am not well versed except to say that Dave has a great team of ONCs behind him and if anyone of our family has had the same experience I know you will hear from them. Don't forget to let us know how the new Scan comes out. If only I was a magic eraser and could erase this monster from all I would love that even if I ended up just a little nub. Sending prayers and love to you both. You never know how strong you are until "strong" is the only choice you have!

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: New to the Site

Oh, Sandy, I am so sorry! Dr. Fong is the one who told me than when this basta@# begins in a new area it often is a different mutation. But I thought gem/Ox was pretty good at getting them all. I know that I have at least 2 diff mutations.
I hope that by adding Xeloda you are able to get back in control of the situation.
I don't have any words of wisdom, as I never had another tumor in my liver, nor did I have new growth while on chemo.
I also had radiation. We tried stereotactic radiation, and I had 7 months with no treatments afterwards. We knew the disease would eventually rear it's ugly head again, but the radiated areas are still nice and quiet. It's been 17 months. I did have a new met after about 7 months, and opted for the trial that I am on.
I have decided to try to let God worry about things. And I have let a lot of the worry and negativity go. I believe it has helped.
My wish for the new year (or sooner) is that there is a big breakthrough in the treatment, and we can all be cured.
My prayers are with you and Dave. I am sending healing energy. My troll has been quiet for some time: I haven't needed him. But I will try sending him Dave's way to munch on that nasty tumor!
Hugs,

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the Site

Thanks Lainy and Kris for the quick and always loving and supportive words especially in light of this setback.   May I find both your strengths to keep a dedicated focus on what matters most, Dave's well-being,  and not let the "noise" derail me.  I am a Taurus and have repeatedly been told I give new meaning to the dominant traits of stubbornness, being headstrong  and relentless pursuit of what I want!!
I know with you keeping us in your prayers, when things seem the bleakest, we will move beyond this and get a handle on this terrible disease.

Re: New to the Site

Hey, Sandy I am a Taurus also. What me stubborn? I really see it as a good thing as nothing deters us from our goal and it is the Taurus in you that will ride the waves. Altho it is all your cc family right beside you, you are not alone. Sandy I have a me story: Last Feb. I was in the Hospital for 2 weeks with this &%^$ Ulcerative Colitis starving to death. On my 6th night I was told I was going to get a TPN line. NO, I would not accept that. I fell asleep about 9PM thinking how I was going to tell my kids that I was not going home. I could not hold down even water. As God is my witness I awoke at 2AM and I was so hungry, I knew I had turned the corner. I don't like peanut butter but ate 12 crackers with peanut butter, then jello and sherbet. I had turned the corner ...no TPN. I know Teddy helped too, I am sure of that. That is my point that when things look the bleakest most often something happens to turn it all around. Be strong, hang on and we are all right beside you.

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: New to the Site

Hope this gets a giggle. When I went to bed last night I pictured my little troll. He came right up, smiling and antsy. Guess he's been bored. I told him I didn't need him, but I was sending him up to NYC for Dave, and he wiggled like an excited puppy! I said I wasn't sure where, but he just winked and trotted off!! lol
I woke up a couple of hours later and there he was, waiting, as he knew I was sending him to Kris and Mark. I told him he had a long trek, but he just winked again and ran out. He's bow legged and so cute in an ugly sort of way!
I woke this morning and there he was again. So I told him if he was still hungry I had that lymph node. So he munched on that, too.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the Site

Kris, U R 2 FUNI!  Somehow I see a Children's book here on Cancer! Think I better try to go to the store now to get away from all you nuts! Oh, I am one 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.