New to the Site
- This topic has 56 replies, 11 voices, and was last updated 11 years ago by
.
-
Posts
-
has anyone heard of Andrew dela Torre
http://www.njlivercare.org/specialist/surgery/delaTorre/delaTorre.htmlhe 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!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.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!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!
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.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.Kris….we are so fortunate to have you sharing your first hand experience with the pump. Thanks a million.
Hugs,
MarionSandy,
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!!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.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!!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,
MarionSandy, 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!
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.
- The forum ‘Introductions!’ is closed to new topics and replies.