July 23, 2012 at 11:17 pm #49545marionsModerator
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.
MarionJuly 23, 2012 at 9:38 pm #49544
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.July 23, 2012 at 6:54 pm #49543
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!July 23, 2012 at 6:43 pm #49542
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.July 20, 2012 at 9:57 pm #49541
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.July 20, 2012 at 6:35 pm #49540
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
-JyotiJuly 19, 2012 at 11:31 pm #49539
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?July 19, 2012 at 11:20 pm #49538
Dear Jypan, while I can’t help with your question I do want to welcome you to our remarkable family and say I am sorrry you had to find us. I do know your brother is in a good place for treatment and I also know others will join in here. Just a suggestion for you that you might repost your Introduction under Introductions as this is an older thread and I hate to see your post lost. You have come to the right site that is for sure so please keep us posted.July 19, 2012 at 11:07 pm #49537
Thanks to Kris and others for sharing their experience with HAI pump. Reading these posts gave me much needed hope.
My brother had an HAI pump installed at MSKCC by Dr Fong. There seems to be some leakage, which still persists after attempts to fix them.
His oncologist Dr Kemeney suggests we can try a low dose of chemo through the pump and see what happens. This is what is making my brother very scared.
Prior to that, from MArch 2012 to June, 2012 the systemic chemos have not been very effective in reducing the tumor or lymph nodes. In June, 2012 Dr Fong did embolization using nano-knife. That is when he also installed the HAI pump which is having the leakage.
I would appreciate any pointers, similar experience that would help us decide whether to go with chemo delivered via HAI pump despite the leak using the low dosage. What kind of questions should we ask Dr Kemeney? Can the leak be quantified? Or is the pump a failure now?
Thanks.December 2, 2011 at 12:42 am #49536marionsModerator
Kris….say it loud. we won’t tell. You will try to do those things others do – dancing, mingling with friends and you may even find a part time job. Enjoy the roller coaster high.
Hugs to you,
MarionDecember 1, 2011 at 11:24 pm #49535jim-wildeMember
Kris, glad you’re feeling a little better. I’m also glad you got to hear Kim’s first program. She’s a little girl, but has the heart of a lion. She’s decided to dedicate her life to cancer patients and the radio program gives her an effective way to spread her positive attitude and her way of dealing with a potentially crushing illness. I’ve learned a few things from her!
I hope the blood deal gets straightened out pronto. You’ve had to deal with too many bumps in the road.December 1, 2011 at 10:50 pm #49534candrewsParticipant
Thanks for the update Kris and hang in there!
CindyDecember 1, 2011 at 8:47 pm #49533
Oh My Kris, where to begin! Mama Lainy hates to lecture but….I am a good judge of people, I graduated from people 101, don’t you dare question if you are fighting hard enough! I didn’t know whether to post this or fly out to you! You are a fighter with a good spirit and a great attitude. Everyone does the best they can and you should NEVER question if you are fighting enough. Look at all you have been through and how dare you insult Kris that way. 😮 How many people could survive half of what you have been through. Whew! Ok that’s over. With that said, you go out only if you really feel up to it as your infection is still not over. I think it may be nice to get a part time job but if not that what about volunteering one day a week at a Cancer Center or something like that.
I am very sorry about your friend but sometimes life just gets in the way. Please just be yourself as you have been you are doing a great job at it. Lots of love being sent from me to you! The you, you really are!December 1, 2011 at 8:09 pm #49532
Dr. Kemeny said the bacteria was very rare. Of course it was: why on earth would I have anything NORMAL??
I finished i.v. at home last night. The cough is clearing up and I’m feeling a little better. Still short of breath, and the pump area is a little tender but I’m feeling better every day.
So they stopped by today and unaccessed(word?) my port. YAY!! Back to no tubing.
Bad news today: I found out a friend of mine passed away from her prolonged (3rd) fight with cancer. She was a real fighter and I feel a little guilty that I wasn’t there for her at least a little in the past few months. We weren’t great friends, and I know she had a wonderful support group, but I still wish I had picked up the phone to call her instead of just thinking about it.
I also listened to Kim’s radio show today. She’s making me think about whether I’m fighting hard enough or not. So no matter what I feel like today, I am going to get my butt out of the house and go to dancing tonight. I might not dance, but I’m going to see my friends. I know I need to steer clear from everyone in case I’m still fighting infection but I’m going to try to be more “normal”. (don’t say it out loud, but I’m gonna look for a p/t job. Every time i say that, I end up in the hospital, so I’m whispering it!!) Maybe that will make me feel better and more “normal”.December 1, 2011 at 12:57 am #49531candrewsParticipant
Just checking to see if there was any update from Kris!
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