All our thoughts and prayers are with you Dakota! Best of lucj
Thank you Lainy and Chris - as always - for bringing me back from despair, and putting a smile on my face.
Thanks also PCL and Marion for weighing in. Your support, experience and insight are invaluable.
So based on the feedback we went over today to see Doctor Fong - we would have seen him immediately upon hearing the latest developments but today was his first day back after a week of conferences.
He was actually very pleased with the liver - back in July when we started Chemo he said that ALL the blood vessels were constricted and Dave could well not have made it to August. Now they were all open,and the original tumor was down in size again, this time to 8 cm. He was not particularly concerned with the second tumor in the liver - all the original satellites he burned off during Dave's surgery no longer appeared. He felt strongly that the FUDR was still the most effective way to treat this that they had found - also he was thrilled all the Markers were normal.
Of course he was less happy with the bone lesion - he said this would not be a killer, but rather a quality of life issue (rather than a longevity of life) as it had the possibility of causing a significant amount of pain. He said he was glad there was only one, he could easily have seen a number appear and that one alone was a very decent sign. He set us up to see a Thoracic Surgeon tomorrow to evaluate whether it made sense to remove the rib in order to do away with the pain - his biggest concern was that having surgery would mean stopping Chemo and that was probably not a good option at this point. He was more inclined to see what Dr. Yamada would say regarding Radiation options.
I asked about Clinical Trials - he said that would at some point be an eventuality, but really was a last resort and something we would explore only when the Chemo stopped working. He felt strongly we were pursuing the best Chemo combination out there, one that had demonstrated the greatest success. Same for Molecular Profiling at this stage.
Overall, feeling a lot more positive and less helpless than before meeting with him. Felt we left with a game plan and a much better understanding. I think Dave also felt a lot more hopeful. All in all, a good day!
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.
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
Oh Kris!! That is such wonderful news!! You ARE our Hero!!
You are here every day for every one of us - let's all celebrate you today!
Wishing you the best of luck, fantastic results and all around great JooJoo (sp?) for your tests oh AND luck at the tables - enjoy! you have certainly earned it!!
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!
WOOHOO!!! You deserved all of it!!! well done!
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!
WOOHOO!!! You ARE our hero!!! well done, keep up the awesome work!
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.
Best of luck today! Sorry to hear about your long journey - we seem to be right in there with you.
Maybe we will see you at MSKCC today - Dave's second (at least scheduled) pump session is with Dr Kemeny today at 11:15AM but I have come to learn visits there are typically an all day affair!
I replied on the other thread but would love to meet - I am in NYC so something in the Basking Ridge to Phila area would be doable for me.
Thanks for your help here!
Thanks for your wonderful posts and offer to meet up with "locals". Whereas we are in NYC, sounds like you have so much experience, success and wonderful energy to share. I would gladly make the trip if you are willing to put something together. Please keep me posted!
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.
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!!
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.
Just checking in and thanks as always for the support, the love, caring and fight!
It's been a quiet week - Dave began the pump chemo Monday. The Celebrex (not being covered by Insurance still fighting with them but not going down that rathole here) the Oncologist prescribed really seems to have turned him around though the last 2 days he has zero appetite. I'm sure the constant 100 degree temperature we have been experiencing even during the nights isn't helping. Dr. Fong's suggestion of virgin Pina Coladas though still seem to be saving the day!!
I do have a question - probably premature as we are just starting our chemo journey- about Clinical trials. I would like to at least think they are potentially options worth investigating. I imagine they are specific to the extent of the CC, spread, size etc. Where would I start if I wanted to research to see if any would apply to us?
Thanks in advance for any advice. Have a wonderful and an unforgettable weekend!
Thanks PCL1029 and all who responded with information and links - it was invaluable.
SO - yesterday we had our first surgical post-op follow up with Dr. Fong. He seemed pleased with how Dave looked but was insistent he load up on the calories - he recommended french fries and virgin Pina Coladas and Dave has been eating like a kid ever since! He did inform us that the tumor on the right side of the liver had gone from 9cm when he first saw it to 12.2cm and called Dr Kemeny to advise she begin the chemo to the pump ASAP. So we met with Dr Kemeny - and she administered the first dose to the liver immediately - she will alternate 2 weeks of pump chemo, then 2 weeks saline. During the saline weeks, she will begin the Systemic chemo to address the nodes and the spot they discovered on the lung.
They prescribed Celebrex and Zantac - even though he spiked his daily 6PM 101.9 fever immediately upon our return from MSKCC, he hasn't had fever since beginning the drugs- today his appetite was back with a vengeance, he was animated, happy, never spike a fever the entire day and had the first really good day he has had in the 2 months since the original diagnosis.
FINALLY - after the "hurry up and wait" we feel like we are doing something to go after the tumors in his liver and prevent additional spread.
I can't tell you how happy we all are and how great it feels to have my husband back at least without the fevers, chills and constant pain.
I have no idea what comes next but we are out to win it and take no prisoners!!
Thanks to all of you who have responded. I am overwhelmed by the kindness, support and willingness to share your own learnings. I am humbled by how much you have all been through, the pain and disappointments you have put up with, but most of all the appreciation of the wins, and the fights, and I know there will be many. We are ready for battle - with a vengeance.
Please forgive me if I use wrong terminology as I am still learning. But please keep the information flowing so I can be as knowledgeable of any/all options as I need to be.
And please keep us in your hearts and prayers.
Before even introductions, I must say I am overwhelmed by the amount of knowledge, research, support, love and passion I have seen on this site for the couple of weeks since I first discovered it. I realize now how little I know, and how much I still have to question and learn.
I'm Sandy and my partner and the love of my life (25 years and father of our beautiful 23 y/o daughter) was diagnosed in May with CC. This after a long and painful run around as our primary care physician was convinced this was a parasite - we eventually were laughed out of the office of an Infectious Disease specialist who told us a 9cm tumor on an MRI was clearly not a parasite. A needless battery of tests and then finally the biopsy confirming the CC. At this point, completely confined to the liver. Since then we have consulted with several surgeons and oncologists - all said they could not remove the mass because in addition to the large tumor there were also a number of satellite tumors on the other side of the liver. They recommended systemic chemo - a combination of 2 - all confirming there was no cure and offering slim odds.
Dave is a very fit, strong 61 year old, never sick a day in his life so all this was devastating and hard to process. No jaundice, no weight loss, only some discomfort around the abdominal area where the tumor was pressing.
Then we met Dr. Fong at MSKCC, the most extraordinary man, who at least gave us hope. He proposed a combination of surgery and implanting a pump to deliver chemo directly to the liver as our best odds. Initially he thought he could surgically re-sect the liver but the CatScan taken the day prior to surgery showed for the first time a spot on Dave's lung (endoscopies, colonoscopies, had all been clean). He felt that with that, the size of the mass and inability to get clean margins, and the extensive spread of the satellite tumors to the other side of the liver, surgery to remove the primary mass was no longer an option. He would move forward with the surgery to position the pump.
He performed surgery on June 24 - upon going in he discovered some lesions around the liver, halted the surgery and had the lab look at them - they proved to be benign so he moved forward with positioning the pump, and while he was at it, killing off as many of the satellites as he could see.
The recovery has been very very hard. The hurry up and wait part being the worst, as we were told we would have to wait several weeks before beginning the chemo- all the while knowing the cancers could be growing and spreading with nothing being done to stop them. We also were told that due to the spot on the lung, we would need to also be doing systemic chemo in addition to the pump to attack the spread. In addition to discomfort from the surgery, the worst seems to be fevers and constant drenching sweats, inability to sleep,and loss of appetite.
Tomorrow is our first post surgery follow-up with Dr Fong. Immediately after we meet Dr. Kemeny for the first time,the oncologist who will be managing the chemo. We went in Thursday for another CatScan so I imagine we will also learn the most current status of any other spread.