Foggyocean wrote:Hi All,. Has anyone on this board traveled to MSK to get the HAI pump? How often do you have to go there? Do you continue to receive treatment at your local cancer center? It is overwhelming to think about navigating a new hospital and system, but it seems like it would be worth it. Does anyone have a liver surgeon they can recommend?
Thanks for any and all input.
(Oh, I should add, he is KRAS mutant and MSS -- I will work on adding a sig. line).
mariane wrote:Hi!
I am originally from Poland but I live in Atlanta, GA, now.
I moved to the US for cancer treatment. My husband had been working for American company for years when I got diagnosed. His insurance made treatment in NY available for me.
I had 10+ mets to the liver when I began treatment. My largest met was 7.5cm. I came to see Dr. Kemeny for the first time in August, 2015.I had already my primary tumor removed in Poland and sent to CARIS for genetic tests. My tumor was, what oncologists called sometimes quadruple negative - KRAS, NRAS, BRAF, PIK3CA negative, MSS. It was APC and p53 positive.
My husband had job in Atlanta area so I was destined to travel for treatment. Dr. Kemeny contacted local cancer center in Atlanta and scheduled my first appointment . Since then I had chemo treatments every 2 weeks: once in NY and once in Atlanta. Dr. Kemeny coordinated the whole process. I had to fly with 5FU pumps what meant additional tests at the airport in NY. Not all the devices at the airports detect HAI pump. Now, ( I am off chemo) they mostly do not see my HAI pump and port ( I still keep my port).
I had all scans in NY. First scan was after 3 chemo treatments. I had very advanced disease, when I started. My first oncologists gave me only about 3 months to liver failure. On the first scan after beginning chemotherapy I got 50% shrinkage and I met surgeon to discuss the pump placement. Next month I had my first surgery in NY - I had the pump placed and 1 met removed to check the pathological response.
The HAI pump with chemo needs to be flushed with saline or steroids (if liver enzymes go up) after 2 weeks. Dr. Kemeny allows chemo treatments only in NY. It means travelling to NY every 4 weeks. Then there is pump flush at local cancer center.
Dr. Kemeny rescanned me after 2 months (I did not get sufficient shrinkage at that time).
In your case, since there is only 1 met, the whole process should be easier.
The resectability depends on metastasis' location and size. The location close important anatomical structures like veins, arteries or bile ducts makes the surgery more difficult and dangerous. However the MSKCC surgeons are brilliant and dedicated to help. I will never be grateful enough to my fantastic surgeon: Dr. D'Angelica.
I many times posted here the research studies and statistics after HAI pump treatment I was able to find on-line.
I also discussed the statistics with Dr. D'Angelica during my appointments. Dr. Kemeny is usually super busy ( she sees sometimes even 60 patients per day). Dr. D'Angelica told me that even after surgery and HAI pump treatment 70% of their patients have recurrences. However, they watched their patients very closely and act fast. The liver recurrence after pump treatment is usually local recurrence, detected early and is being immediately removed. Thanks to this approach their statistics is almost 80% survival for stage 4 patients, often pretreated. It is unbeatable.
If you have more questions please let me know.
Good Luck!
Lee wrote:Foggyocean wrote:Hi All,. Has anyone on this board traveled to MSK to get the HAI pump? How often do you have to go there? Do you continue to receive treatment at your local cancer center? It is overwhelming to think about navigating a new hospital and system, but it seems like it would be worth it. Does anyone have a liver surgeon they can recommend?
Thanks for any and all input.
(Oh, I should add, he is KRAS mutant and MSS -- I will work on adding a sig. line).
Hi and welcome, sorry for the reason you are here. I never had a liver met, butt many people here are NED today thanks to Dr Kemny and assoc with MSK. I know there are some return follow ups, just not sure how many. Other will come along with more info. Butt I do know many people get there chemo local and I assume some follow up care can be done local also. Butt I believe any scans, etc must be done a MSK.
Would you be taking your kids with you to MSK? There are many hotels near MSK, maybe a bit on the expensive side from what I understand. I also believe some people have rented an apartment nearby and took the train into New York city. Maybe something to consider.
Good luck, hope this helps some,
Lee
NHMike wrote:This is fascinating stuff. I wouldn't have known about this options if it weren't for this forum and my curiosity as to what was being discussed. And then I had to go look it up. For those that don't know, it's an implantable pump that delivers chemo directly to the tumor. It stands for Hepatic Arterial Infusion.
Robino1 wrote:Is the pump permanent?
Foggyocean wrote:Wow, everyone, thank you SO much for your replies!! It sounds like it is quite doable and really, a 4 hour car ride is nothing compared to what some of you have gone through. Like all of you know, the sitting around and waiting is the excruciating part so after double checking with my husband I called MSK yesterday and got the ball rolling! I just need to gather all his records from MGH now and they will send them up to Dr. K's office to look over. I'm hoping the turnaround is somewhat quick as we are meeting with his MGH docs next week to talk about options. Interestingly, I asked his onc last week about the HAI pump and he said they are going to start doing it at MGH "soon"...wonderful news for those down the road. He also said he was involved in a clinical trial with HAI pumps at MGH 15-20 years ago and he honestly didn't know why they stopped doing them. He didn't think my husband "needed" a pump at this point, I think he thinks of them as something to use when there are multiple inoperable mets to the liver, but we are hoping to avoid that and avoid another recurrence.
Again, thank you for all the information you have all provided. I have learned so much on this board and you all are truly saving lives by sharing your knowledge and experiences.
Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”
Users browsing this forum: No registered users and 9 guests