Re: Liver Infusion Pump?

Jypan:
I'm sorry your brother's pump is still leaking. Mine does too. We tried a lesser dose of the FUDR and I was able to handle it. It worked quite well on the tumor. Unfortunately, when they decided to up the dosage, my liver didn't like it. I only received chemo thru the pump a few times. Not sure if it was worth having this thing in me, but between the oxaliplatin and the FUDR they did a great job shrinking the tumor.
I LOVE LOVE Dr. Fong. You have to get used to Dr. Kemeny. She's definitely not a warm fuzzy person.
I had 3 embolizations to try to stop the leaks from my pump to the tumor, and the 3rd one was mostly successful. I know they try a few times to plug the leaks. She should confer with Dr. Fong about where the leak goes and then talk to you and your brother about the possibilities.
What chemo was your brother on?

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: Liver Infusion Pump?

Kris,

My brother, sister-in-law and my husband will meet with both Dr Fong and Dr. Kemeney the coming Monday. I will suggest asking where the leak is going and the possibilities thereafter.

The chemos that my brother has been on are as follows:
(1) First combination of: Gemcitabine and Oxaliplatin
(2) Then Gemcitabine and Capecitabine(Xeloda)
(3) Now Gemcitabine and Erbitux

He has had liver embolization, Nano-knife, Gall bladder removal and HAI pump installation - Done by Dr. Fong. So far the main concern has been the effectiveness of chemo in shrinking the tumor and lymph nodes.

We also sent the samples for chemo sensitivity assay testing to Rational Therapeutics and the result showed resistance to 5FU, Gemcitabine and Cisplatin alone. However there is some synergy when these drugs are given in combination. It would be good if members can also weigh in on this- whether drugs actually do not work if the chemo-sensitivity testing says so. Dr. K was not so keen on that, but Dr. Fong thought with chemo not being effective in shrinking the tumor for last couple of months to allow him to attempt resection, the window of opportunity was shrinking. So he  he was fine with chemo sensitivity testing and proceeded with nano knife.

Now coming to back to chemo, and pump, Thanks for your input, we would ask where is the leak going (Dr Fong), and what chemo is being planned through the pump (Dr. K).

Because, my brother has not had results he was hoping from chemo, as well as the pump now has a leakage, and now he notices a tumor like growth on his scalp that was tested last week, he has been very very down for months. Also being an international patient from India, away from his kids and in NY for 5 months and paying for his own expenses, has been very hard on him.

When I visit NY in 10 days, one of the things on my agenda is to show your posts to hopefully pump him up a bit.  I will give him your PACMAN idea :-)

-Jyoti

-Jyoti

Re: Liver Infusion Pump?

Jyoti:
As a cancer patient, he should be able to stay at the Hope Lodge free. But only with 1 caregiver. He should ask SK about that. They have a patient advocate (not the right words) person that should be able to coordinate that. At least that will help with expenses?
I am so sorry to hear all the problems he is having, and pray the growth on his scalp turns out to be nothing.
And I can understand his depression. I finally asked for Xanax because a couple of months ago I just couldn't take it anymore. I was so tired of crying. But I also decided I want to LIVE with cancer, so as long as I can stay or act healthy enough, I am LIVING. I recently started playing free poker. It gets me out of the house and I actually forget the cancer word for a couple of hours.
I hope nothing but the best on Monday. I will be praying for good news.

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.

104 (edited by jypan Mon, 23 Jul 2012 12:43:36)

Re: Liver Infusion Pump?

Update: July 23, 2012
My brother met with Dr Fong and Dr K. today.

There is mixed news. Starting with good news...the tumor has shrunk significantly post nano knife and embolization.

However the activity in the lymph nodes has increased.

There was a new bump on my brother's scalp that developed about 2 months back that was identified as a tumor. This tumor is external and is not in the brain and according to Dr. Fong it can be dealt with systemic chemo or can be removed.

The area of prime concern is to control metastasis and identify the chemo combination. Dr. K has advised my brother to continue with Erbitux and Gemcetabine and evaluate results after 2 more doses.

Another news that has my brother very very happy is that Dr. Fong and Dr K think it would be actually good for them to go back to India
for 2 months to be with their kids in their home and meet them back in late Sep for evaluation and chemo using HAI pump.

Dr. K and Dr. Fong has identified physicians for my brother to work with.
He gets to go home after 5 months :-) and I confident this will help in his recovery.

-Jyoti

Re: Liver Infusion Pump?

Jyoti, I am so happy with your news today. Having options is the best and being able to go home for a visit beats any other RX! What a blessing that we have heros among our many good Doctors! Looking forward to more good news!

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: Liver Infusion Pump?

Jyoti:
Good news seems to be the order of the day. I'm so glad your brother gets to go home for a while. As long as the pump is filled with the maintenance gel it lasts about 8 weeks which is good. No poking it every 2 weeks.
I hope the Gemzar and Erbitux cocktail works for him. I didn't have that.
The problem is that no 2 sets of cells in our own bodies react the same to treatment, so finding the right chemo cocktail is very difficult. AND because cc is so rare, many of the chemo drugs have not been approved for fighting cc. Hopefully soon someone will have a breakthrough and figure out which are the most successful...
I hope your brother enjoys his time at home before coming back to NYC. I know it will never be far out of his mind, but tell him to enjoy the chance and LIVE with it!! Do everything he can and make lots of memories for the lonely days to come when he has to go back to NYC.

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: Liver Infusion Pump?

jypan....I also am happy to hear of the developments.  Often, when caught up in overwhelming situations, we neglect to tend to our emotional needs.  The trip to India provides for a welcome reprieve to your brother and the people he loves.
I wish for a safe travel. 
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