New member and HAI pump therapy questions

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FightCRC
Posts: 5
Joined: Fri May 25, 2018 10:39 pm

New member and HAI pump therapy questions

Postby FightCRC » Sun Jun 24, 2018 11:12 pm

Hi all,

I am the primary caregiver to my wife. Age 48, diagnosed last month with Stage IV rectal cancer. Multiple mets in both lobes of liver. We have been told by our oncologist (at Kaiser in Bay Area) that she is not a candidate for surgery. All treatment is with palliative intent. No curative intent.

Course of treatment is 6 cycles of FOLFOX, followed by 6 weeks of chemo/radiation, then surgery. Then, chemo for life. This appears to be the standard, based on multiple opinions.

I've spent hundreds of hours online (I know, I know) since then trying to learn as much as I can. These boards have been so helpful and educational. I've found that I've gotten the most value from reading and learning from everyone's experiences. Thank you.

So...I now know that resection is the goal for our situation. Kaiser doesn't appear to support this for us. Based on what I've read, the HAI pump therapy gives us our best shot at eventual liver resection. So we will go out of network if we have to, to get this treatment.

The clear #1 choice is Dr. Kemeny and MSK. However, we live in CA. We have a young family. Although I'm certainly willing to move temporarily across country to get treatment at MSK, there will be an emotional and mental toll on my wife to be away from home.

We *may* have an option closer to home. Dr. Yuman Fong is a world-renowned liver surgeon now at City of Hope in Southern California. He came from MSK and has written papers on HAI. Presumably, he can perform the procedure. We are working on an appointment to see him in two weeks.

Certainly based on reputation, I have no qualms with receiving care from Dr. Fong. He appears to be at least as accomplished (and really, more so) as the liver specialist counterparts at MSK (Janargin and Kingham). However, if the colon resection surgery is done at the same time, are CoH colorectal surgeons as good as the top MSK colorectal surgeons (Paty, Weiser)?

In other words, is the overall team superior at MSK? Will the followup (i.e. FUDR administration) at CoH be as good as MSK?

And if so, are they superior enough to justify us moving across the country for 6 months? When our support system (which has been wonderful) is here on the west coast? Is it a clear case of #1 and #2...or is it more #1A and #1B? I know that expertise, both in implantation and FUDR treatment/monitoring, is key to a positive outcome.

I realize this may be totally subjective, but am hoping to hear your thoughts.

And yes, I know I may be putting the cart before the horse...we may not be viable candidates for the procedure. But I've got to try. I now believe that, while I do like our Kaiser oncologist and she's very caring, Kaiser as a whole may be limited. I do want to be seen at a NIH-designated Cancer Center.

Thanks again for any feedback.

Felix

User avatar
juliej
Posts: 2841
Joined: Thu Aug 05, 2010 12:59 pm

Re: New member and HAI pump therapy questions

Postby juliej » Wed Jun 27, 2018 7:06 pm

FightCRC wrote: I do want to be seen at a NIH-designated Cancer Center.

Felix, YES! This is the right move to make!

Short background on me - I was diagnosed as a Stage IV with multiple mets to my liver and one met in the bottom of each lung. My local cancer center basically said 6 months without chemo or 18 months if I had a good response to chemo. After 14 months of chemo at my local cancer center, I went for a second opinion at MSK. Despite the dire prediction of my local oncologist, they said I was a good candidate for a liver resection and an HAI pump. Six weeks later I was in NYC having surgery (removal of rectal tumor, liver resection, and implantation of HAI pump).

Three months later they did a double-lung surgery and removed the tumors from my lungs. I also had my ileostomy reversed during the same surgery. I am officially NED now, free of all cancer. The moral of this story is I'd be long gone if I had stayed with my local cancer center. That's why I'm glad to hear you're planning to go to an NIH-designated Cancer Center! It can make an enormous difference in your treatment options and your wife's chance of beating this.

As far as the HAI pump, I've heard very good things about Dr. Fong. (For reference, my surgeon was Dr. D'Angelica at MSKCC.) I think you would do fine with him if he agrees to do the procedure. As far as the colon resection, ask him to give you a referral to the top colorectal surgeon at City of Hope. (Again, for reference, my colorectal surgeon was Dr. Weiser at MSKCC.) There is also an HAI pump program at OHSU in Portland, Oregon, just so you know.

Dr. Kemeny and MSKCC have the most experience with the HAI pump. They are ones who started the program and they have thousands of patients who come there from all over the world just to see her. I've met people from Israel, Germany, and other countries in the waiting room. She is a brilliant doc, no two ways about it. But the ones who've trained there like Dr. Fong are carrying on her expertise. So I think you'd be fine with him unless there is some disconnect at your first meeting. The team isn't just her oncologist, her liver surgeon, her colorectal surgeon, etc. The team also includes you and her. So if you feel like there are communication issues, then make a consultation appointment at MSKCC. Otherwise, my advice (for what it's worth) is to stay with Dr. Fong.

As far as moving to NYC, I'm from the west coast too. Moving to NYC on short notice was tense and frightening. I didn't know a soul there, much less how to get around the city. But I managed to rent an apartment, not far from MSK, and learned my way around. I actually fell in love with the city, and MSK held my hand through every single worry during my treatment. If you're from out-of-state, they monitor you quite closely, providing you with a strong support system. I understand you'd rather stay where you are and that makes sense to me in your case. I just wanted you to know it can be done and it's not as bad as you might be imagining at this point. If you decide to go that route, let me know and I can give you some advice.

And to hell with that "no curative intent" crap from Kaiser!!! :evil: :evil: :evil: Take your wife to Dr. Fong or Dr. Kemeny. You won't regret it. More and more docs are realizing that some Stage IVs can be "cured" and it's vital for you to find someone with that mindset. Stay strong and do what you have to do.

Feel free to PM me if you have questions about MSK, etc. And tell your wife hello from me! :D

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 5/11/2018, CEA<1

FightCRC
Posts: 5
Joined: Fri May 25, 2018 10:39 pm

Re: New member and HAI pump therapy questions

Postby FightCRC » Thu Jun 28, 2018 2:03 am

JulieJ...THANK YOU for this reply. You are actually a big reason I've studied HAI. Your story is a huge inspiration. Thanks so much for your feedback here.

We were told the same thing at Kaiser: 3-6 months without treatment, 18-24 months with treatment. I realize that's just a safe answer, and doesn't necessarily mean anything for our specific case, but when I asked our oncologist if she had ever had a SINGLE patient with Stage IV colorectal cancer make it to 5 years...she wouldn't answer. I took that as a no, and knew I had to look outside Kaiser.

So these boards, and accounts like yours, have been absolutely instrumental in accelerating my learning curve, and understanding that there may be options besides the standard, conservative protocols. So thank you again, along with everyone who has shared their experiences.

I don't think I can PM you yet, as I'm still too new, but if there's any way to contact you, I really would appreciate the opportunity to ask some more questions. If anyone has a suggestion as to how to do that, I'd very much appreciate it. I'd love to reach out to some others here with MSK and/or City of Hope experience, too. Thank you.

VeggieLvr
Posts: 52
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: New member and HAI pump therapy questions

Postby VeggieLvr » Thu Jun 28, 2018 10:09 am

Hello Felix, chiming in to say I agree with everything Julie said! (She has been a big inspiration for me as well.) I am an MSK patient and recently had the pump implanted (you can see my post about it here: viewtopic.php?f=1&t=60258). Dr. Kemeny is the only oncologist I've seen, who I learned about thanks to these boards. When I was initially diagnosed just this past February, I was rushed to surgery to remove my primary colon tumor as it was on the verge of obstruction, and my surgeon was then going to refer me to a local oncologist. I did my research and due to my liver mets knew I only wanted to go to Dr. Kemeny. She accepted me as a patient and my experience with her and everyone at MSK has been nothing but wonderful.

I know you live on the opposite coast, and Julie gave you great information on her experience moving to NYC for treatment. Although I am in NY, I live on Long Island, so it's a 1-2 hour trip one way to the city depending on traffic. For that reason I am able to do my chemo treatments locally (there is an MSK center on the Island not too far from me), and then go into the city periodically for scan results and for my recent surgery. If you do make the decision to temporarily move here, you could also look into renting in Queens or Brooklyn, which would be a little less pricey but still enables you to take public transport/taxis/uber. You could try Western Nassau county also, but in that case I'd say you would definitely need a car.

I'll always remember what one local nurse said to me after my first chemo treatment: "You're a Kemeny patient? She will never give up on you." Such a reassuring thing to hear when starting this scary and confusing journey. She's brilliant and gets things done. My surgery was scheduled very quickly - I went to MSK on a Monday for my fifth chemo treatment, met with Dr. Kemeny beforehand, where she said I wasn't having treatment that day but instead getting surgery the following week! It was overwhelming at the time with how quickly it happened, but I'm so grateful I was determined to be a surgical candidate at that point, and I'm now just over a week out of surgery and feeling better each day.
F, 42, Stage IV CRC
2/13/18 - ER for abdominal pain, CT scan done, possible cancer
2/23/18 - colonoscopy & virtual colonoscopy, diagnosed colon cancer
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets removed from lymph nodes, multiple mets to omentum & liver, one possible lung met. Diagnosed Stage IV
4/6/18 - port install
4/9/18 - started Folfox (oxaliplatin & leucovorin, 48 hours of 5FU) - 4 rounds completed
6/19/19 - liver resection & HAI pump install

MSKfan
Posts: 1
Joined: Thu Jun 28, 2018 2:42 pm

Re: New member and HAI pump therapy questions

Postby MSKfan » Thu Jun 28, 2018 2:55 pm

Felix - wish you and family the very best. Our family member is a patient of Dr Kemeny also lives out of state. He has had two major surgeries, one resection of the colon and a second for liver resection. He did not find it necessary to move to NYC and instead stays at the Helmsley Medical Tower for the pre and post operation periods - which are a week to ten days. Additionally there is periodic travel to MSK for scans and evaluations, about every two to three months, but these are only two days each. He has chemo done locally in his home town. Certainly there is expense for the travel but it may be an option v moving as you would likely spend the majority of that time not at MSK. On going treatment and follow up will almost certainly extend well beyond six months.

FightCRC
Posts: 5
Joined: Fri May 25, 2018 10:39 pm

Re: New member and HAI pump therapy questions

Postby FightCRC » Sun Jul 08, 2018 10:46 am

Thank you, VeggieLvr and MSK fan. I appreciate your insights.

Can someone tell me how to send PMs? I can't figure it out! Would like to contact some members here, if possible. Thanks for any assistance.


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