Systematic chemotherapy + HAI?

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Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

Systematic chemotherapy + HAI?

Postby Lele88 » Sun Mar 04, 2018 1:04 pm

Hi there,
My mum got diagnosed with colon cancer stage 4 with unresectable liver metastases and a couple in the lung.
She started 2 weeks ago with Folfoxiri + pantinmumab.
We are hoping to get a high response rate this way so that a surgery might be an option again.

I read about HAI. In Germany where we from this is only used in case the systematic chemotherapy won't work anymore.i have read that in the US (Mrs kemeny)also combines a systematic chemotherapy with HAI to get a very high response rate.

Our doctors don't share this approach. Also her reviews online vary ..not all positive.

Any experience with that? Or with the chemotherapy Folfoxiri and pantinmumab?

Thanks a lot for ur help.

Regards,
Lea

mariane
Posts: 632
Joined: Sun Sep 13, 2015 6:16 pm

Re: Systematic chemotherapy + HAI?

Postby mariane » Mon Mar 05, 2018 9:24 am

Hi,
I think I can answer some of your questions.
I started my systemic chemotherapy with FOLFIRINOX/FOLFOXIRI without panitumumab in 2015. I was nearing complete response after just 4 treatments. Your mom looks like KRAS wild.
From the research available at that time I also opted for FOLFIRINOX+panitumumab combination or FOLFIRINOX + bevacizumab/Avastin. From what I was able to find and what I knew the first chemo mattered. It is good to hit the cancer hard and try to kill it until it mutated further and developed resistance.
Dr. Kemeny decided against bevacizumab as she wanted to check the cancer's response and to implant the HAIP as soon as possible.
With the pump and further systemic chemo I reached the complete pathological response and I have been NED since May 2016.
Dr. Kemeny gave me these almost 3 years. I am off chemo , living good life.
I had:
4xFOLFIRONOX, I became resectable but doctors wanted to preserve as much of my liver possible, I had 10+ big, fat tumors, the largest 7.5cm.
than 2x FOLFOX +2xHAIP
than 2xFOLFIRI +1xHAIP
liver resection
than 5xFOLFIRI +3xHAIP
almost complete radiological response
=2d liver resection, complete pathological response= 100% dead cancer, NED
10x5FU+6xHAIP
I lost only 20 % of my liver=safe surgeries. By the way Liver regenerates very well.
She may have some worse reviews as she might look not very warm. She is very busy seeing 50 patients a day. There is no time for hugging and small talk. I think she is amazing. I don't know whether there is a doctor who knows more about colon/rectal cancer than her. She fights for her patients. I think she saved my life. I am nearing only 2 years NED. However I started with extensive disease and oncologists gave me 3 months without chemo and 2 years at most on chemo if I had good response. I am still here and doing good.
HAIP helps to get into the surgery, lessens the recurrence. Some cancers just do not respond and we still know little about the biology of cancer. We people vary and cancers vary as well. However the research show that HAIP is the best option at this time for crc MSS with liver mets. Hopefully we will have more options soon. There are a few tools/calculators to predict the response. Still not completely reliable
Good luck,
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

Re: Systematic chemotherapy + HAI?

Postby Lele88 » Mon Mar 05, 2018 4:44 pm

Dear Mariane,

Thank you for your detailed reply.

Your case seems similar to my mum,although I understand that you did not have lung metastases?like I said my mum has two small ones and we hope they disappear with the chemo.Today I have called the office of Mrs kemeny and they told me that my mum should finish the first rounds of Folfoxiri + pantinmumab and then we should call again because apparently the HAI is not possible if you have lung metastases.Or have you also heard about cases where they did it with small lung metastases?
When did you start to add the pump to there chemotherapy? How many months after starting with the treatment?

Can I also ask you how you felt after the chemotherapy Folfoxiri/folfoxirinox? They told us before that it is a pretty hard aggressive chemotherapy and the side effects could be high.my mum hardly eats and even drinking is disgusting for her.she did not throw up much or anything like that but she is very week and still lying in bed after 12 days after the chemotherapy. On Wednesday she will get her 2 round and I am worried the doctors say the therapy is too hard for her. She leaves the bed maybe 2 a day to sit an hour or so in the launch.

Did you have metastases in all segments of the liver or only in a few parts?

I also read that a hard aggressive first treatment seems to show the best responses in case you are hoping for s surgery. I guess if i am honest to myself the surgery for my mum is less likely because she has many liver metastases and 2 in the lung but I hope for it anyway.

Very happy it worked so well for you :)

Regards,
Lea

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juliej
Posts: 2873
Joined: Thu Aug 05, 2010 12:59 pm

Re: Systematic chemotherapy + HAI?

Postby juliej » Mon Mar 05, 2018 5:24 pm

Hi, Lea,

I am one of Dr. Kemeny's patients, like Mariane. I had 7 liver mets at diagnosis plus two large lung mets (one in the bottom of each lung). I also had an HAI pump implanted, plus a liver resection and two lung resections. I would not be here today writing you if not for Dr. Kemeny and the HAI pump. She is the world's foremost expert on HAI pump therapy. Patients literally come from all over the world to see her. I don't know where she comes up with the energy to see so many patients! I'm sure she has more Stage 4 patients with liver mets who are alive and doing well than any other oncologist in the world.

I'm not sure why your mom's docs in Germany only use the HAI pump when systemic chemo won't work anymore. There was a study a few years ago showing that patients treated with HAI + modern systemic chemotherapy have a 5-year OS of 80%! Perhaps you can show it to your mom's oncologist and ask him/her to read it.

https://meetinglibrary.asco.org/record/112001/abstract

I would advise following the advice you received from Dr. Kemeny's office: have your mom finish her first rounds of chemo and see how she responds to it and then call back with results from her latest scan and labs. Make sure your mom is staying hydrated after her chemo infusions. It will help flush the chemo from her body and make her feel better. Water with electrolytes is best as it resupplies the body with nutrients that are lost during chemo.

Hope this helps!
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 7/13/2018, CEA<1

mariane
Posts: 632
Joined: Sun Sep 13, 2015 6:16 pm

Re: Systematic chemotherapy + HAI?

Postby mariane » Mon Mar 05, 2018 10:11 pm

[quote="Lele88"]Dear Mariane,

Thank you for your detailed reply.


I am pleased if I can help. I remember how lost and despaired I felt.

Your case seems similar to my mum,although I understand that you did not have lung metastases?like I said my mum has two small ones and we hope they disappear with the chemo.Today I have called the office of Mrs kemeny and they told me that my mum should finish the first rounds of Folfoxiri + pantinmumab and then we should call again because apparently the HAI is not possible if you have lung metastases.Or have you also heard about cases where they did it with small lung metastases?

I did not have lung metastases. I know many patients who had them and Dr. Kemeny did not refuse them treatment. JulieJ is one of them and she had great success.

When did you start to add the pump to there chemotherapy? How many months after starting with the treatment?

I had first pump treatment just 10 days after implanting the pump. It was after 4 x FOLFIRINOX.

Can I also ask you how you felt after the chemotherapy Folfoxiri/folfoxirinox? They told us before that it is a pretty hard aggressive chemotherapy and the side effects could be high.my mum hardly eats and even drinking is disgusting for her.she did not throw up much or anything like that but she is very week and still lying in bed after 12 days after the chemotherapy. On Wednesday she will get her 2 round and I am worried the doctors say the therapy is too hard for her. She leaves the bed maybe 2 a day to sit an hour or so in the launch.


FOLFIRINOX even without panitumumab was hard. EMEND helped me with nausea. Honestly I had more nausea when I was pregnant with my twins. I tried to walk every day even with chemo. I walked a lot. However after the 4th treatment I remembered I felt very, very weak. I crawled in the evening upstairs to prepare my kids' clothes for the next day of school and I remember I cried during each step and sticked to the wall so I did not fall. I was afraid of these stairs later. N=Even now I cannot believe that I can climb them easily. I felt so sick. I lost my hair almost completely after second treatment. With all my strength I tried to survive this. My kids were just 6.

Did you have metastases in all segments of the liver or only in a few parts?

Yes. All segments. Huge 7.5 cm met overtaking the whole left lobe of my liver. Met in caudate lobe. Many big and small mets all over my right lobe....

I also read that a hard aggressive first treatment seems to show the best responses in case you are hoping for s surgery. I guess if i am honest to myself the surgery for my mum is less likely because she has many liver metastases and 2 in the lung but I hope for it anyway.

Very happy it worked so well for you :)


Thank you! I will pray for your mom.
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

Re: Systematic chemotherapy + HAI?

Postby Lele88 » Tue Mar 06, 2018 3:55 pm

Dear Mariane, dear Juliej,

Thanks for your responses.

Today I translated your answers to my mum (she doesn't speak English so well) and she was a bit sceptical about the HAI pump.

My mum is a vet,so has some medicine knowledge herself, and the first thing she said was " if this is working so well,why isn't it done all over the world by doctors? It's not a new treatment, direct treatment of the liver is known since years" .

I had to admit that I couldn't answer her this question. Can I ask you if you had contact with any other of Kemeny's patients,amazing would be to know someone especially from Germany who did that? And how would you answer my mum's question?

I am just worried I might be talking to a couple of "lucky patients from Mrs Kemenys patients" and there might be others who had extreme complications.

Thanks so much for your help, really appreciated.

Regards,
Lea

User avatar
CRguy
Posts: 9673
Joined: Sun Feb 10, 2008 6:00 pm

Re: Systematic chemotherapy + HAI?

Postby CRguy » Tue Mar 06, 2018 5:28 pm

Lele88 wrote:My mum is a vet,so has some medicine knowledge herself, .....And how would you answer my mum's question?

I would tell your Mom to use her experts. I am also a vet (since 1981) and Stage IV survivor (10+ years) and caregiver ( 3 times ) so I have medical knowledge, patient experience and caregiver experience and about 9420 posts on this forum which she is welcome to read :mrgreen: .... SO I would tell your Mom to use her experts and try not to second guess the human medical experts ... BUTT always ask questions, do research and make sure she understands what they are telling her.

... and the first thing she said was " if this is working so well,why isn't it done all over the world by doctors?

because any technique takes time for acceptance, and then the training of teams with the full facilities to accomplish it ....
heart / lung / liver transplants also work well for selected patients .... BUTT they are not done everywhere, are they ? NO,
only at specialized facilities with the right team and support staff.

It's not a new treatment, direct treatment of the liver is known since years"

If Mom is a vet then she likely will have done many hepatic surgeries herself. Injections, biopsies, lobectomies, bile duct transplants, cyst or tumor removals etc.
Each technique and procedure needs to be the RIGHT one for the right patient. Hepatic vasculature ligations with temporal infusions have been done and so have HAI pump implantations ( like cardiac pacemakers and insulin pumps and GPS tracking devices for wildlife bio-ecological management studies !)
So What if direct liver treatment is not new ... if it is right for her then she would likely benefit from considering it ????

I had to admit that I couldn't answer her this question. Can I ask you if you had contact with any other of Kemeny's patients,amazing would be to know someone especially from Germany who did that?

We have a number of HAI "graduates" on this forum and many are still doing well and just chose to more forward with their lives, so they no longer post here.

I am just worried I might be talking to a couple of "lucky patients from Mrs Kemenys patients" and there might be others who had extreme complications.
AND ... ask your Mom what is wrong with even being " one of the lucky patients " ?????
AND if she is a vet she will know EVERYTHING we do as vets may have some kind of "complication" or side effect.
every medication we take as patients or prescribe as vets may have complications .....

maybe your Mom is scared and in denial ?
It would not be unexpected.
Maybe she would consider talking with someone who could help her deal with the fear and anxieties we ALL have dealt with as patients ?
Maybe your Mom just needs time to process all this for herself so no matter how much you / we try to support her and offer information and convince her .....

Ultimately it is HER decision and hers alone... what to do or not do.

I chose to use my experts, do my research, question everything until I was comfortable with it and THEN

THEN I chose to proceed with my treatments with the BEST of what modern medicine had to offer me.

Welcome to the forum Lea
all the best to you and your Mom
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

Re: Systematic chemotherapy + HAI?

Postby Lele88 » Wed Mar 07, 2018 12:43 am

Dear CRguy,

Thanks for your reply.

I agree that I new therapy, in this case systematic chemotherapy + local therapy HAI, needs to start somewhere to get approved and then be able to step by step get to other locations but I am confused why this therapy, which is not new, still hasn't reached Germany where we a based, in case it works so well. So far I have to admit that I haven't checked whether it is more widely used (meaning the combination of systematic and local therapy) in the US.Maybe Germany is a bit slow on adapting this one.

I will schedule a talk with my mum's oncologist (Uniklinik Frankfurt, which is one of the top cancer center for coloctoral cancer in Germany) to discuss his opinion on this.But worried he might tell my mum "not enough experience with this treatment, etc."

Is here anyone from Germany in the forum who had this treatment?

Thanks for all your help.

Regards,
Lea

mariane
Posts: 632
Joined: Sun Sep 13, 2015 6:16 pm

Re: Systematic chemotherapy + HAI?

Postby mariane » Thu Mar 08, 2018 8:36 pm

My father is a vet as well :)
I may try to answer some of your questions. Dr. Kemeny travels the world to make her treatment popular. As CRguy has written training surgeons take time. The procedure is indeed uneasy. The adjusting chemo doses also needs a lot of experience.
I talked with oncology professor in MtSinai in NY. She worked under Dr. Kemeny for 2 years during her training and she told me that Dr. Kemeny has many 20 years stage 4 survivors.
5 months ago I met a patient who was 16 years survivor and is 10+ years NED after 2 or 3 recurrences.
I also met a guy with beautiful bouquet of flowers who was 10+ years NED and just went to Dr. Kemeny to give her these flowers on his cancerversary.
I know the old fashioned oncology and this oncology first rule was to kill the cancer and cut it with clear margins. HAIP uses this approach: kill the cancer with high concentration of locally administered chemo. Impossible for any other organ. Unique anatomy of the liver makes it possible: fed by veins. Tumors are fed by arteries. You can kill the tumors and not the organ. There is another old oncologists bitter joke: we can kill any cancer but we usually kill a patient first. HAIP provides chemo concentration that can kill the cancer without killing the patient. It does not work for everybody. WE are unique, our cancers are as unique as we are. I prayed it worked for me and somehow it did.
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

gfpiv
Posts: 156
Joined: Tue May 25, 2010 9:24 pm

Re: Systematic chemotherapy + HAI?

Postby gfpiv » Sun Mar 11, 2018 2:11 am

Plain and simple, HAI at Sloan Kettering saved my life. It's not always a possibility with lung mets, but sometimes it is. More than half my liver was cancerous 8 years ago, yet I now have no evidence of it in my body.

And frankly, it has always bothered me - and continues to bother me - that so few people that might benefit from HAI are ever even presented with it as an option by their oncologist. In fact, this concern is why I still pop in to this board from time to time. Way too many oncologists and hospitals have no HAI expertise, and for some reason it's easier for them to just poo-poo the proven effectiveness of the treatment in many cases. If I had listened to my first or second opinions and not found these boards online...I probably would not be here today.

HAI can be pretty intense on your liver and bile ducts, so it requires a certain level of health to be considered a candidate. And in your mom's case, finances and travel could be a huge issue that I wouldn't envy having to deal with. However, knowing what I now know, I would have gone to some pretty extensive lengths to give HAI a shot. Yes, I still deal with some issues from intensive chemo treatments, as many survivors do. But I am thankful every day that so far I have been one of the "lucky ones".

Unfortunately, your mom probably doesn't have an easy choice or an easy road ahead of her, but I wish her good luck whatever path she takes. And you have already received some excellent feedback from some helpful and knowledgeable people here.
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

Re: Systematic chemotherapy + HAI?

Postby Lele88 » Mon Mar 12, 2018 10:20 am

Thank you for the feedback and sorry for the late reply.

My mum is currently in hospital because she got a lung embolia from a thrombosis (noone warned us that the chemotherapy can lead to a higher thrombosis risk!!).after Friday and Saturday on intensive care she is now back on a "normal " unit and we hope we can take her home in the next days. What s shock, but now she is better!

Mariane / gfpiv would it be possible that we have a short chat on the phone? Just send me a personal message if that would be possible.
You helped me a lot already, but it would be awesome to get some more personal insides / talk to a "survivor" ;).Mariane, i believe you are based in Europe as well or?

I am still in the process of trying to convince my mum to consider this treatment but my mum is a bit of a critical one like mentioned before.

Thank you!!!!!

Lea

njf
Posts: 12
Joined: Mon Jan 08, 2018 9:32 pm

Re: Systematic chemotherapy + HAI?

Postby njf » Mon Mar 12, 2018 9:38 pm

gfpiv wrote:Plain and simple, HAI at Sloan Kettering saved my life. It's not always a possibility with lung mets, but sometimes it is. More than half my liver was cancerous 8 years ago, yet I now have no evidence of it in my body.

And frankly, it has always bothered me - and continues to bother me - that so few people that might benefit from HAI are ever even presented with it as an option by their oncologist. In fact, this concern is why I still pop in to this board from time to time. Way too many oncologists and hospitals have no HAI expertise, and for some reason it's easier for them to just poo-poo the proven effectiveness of the treatment in many cases. If I had listened to my first or second opinions and not found these boards online...I probably would not be here today.

HAI can be pretty intense on your liver and bile ducts, so it requires a certain level of health to be considered a candidate. And in your mom's case, finances and travel could be a huge issue that I wouldn't envy having to deal with. However, knowing what I now know, I would have gone to some pretty extensive lengths to give HAI a shot. Yes, I still deal with some issues from intensive chemo treatments, as many survivors do. But I am thankful every day that so far I have been one of the "lucky ones".

Unfortunately, your mom probably doesn't have an easy choice or an easy road ahead of her, but I wish her good luck whatever path she takes. And you have already received some excellent feedback from some helpful and knowledgeable people here.


My experience when it comes to my moms treatment and potentially getting HAI in regards to her local onc has been similiar. She doesn't know what HAI is and has never heard of it. Her nurses have never heard of it. They do not understand it and it seems like they have brushed it off and something far fetched. They even stressed the fact that there primary goal is to only shrink tumors to increase quality of life. When we seen Dr. Kemeny at MSK she was optimistic about my moms case, says she think she can get her resectable if she isn't there now and that HAI would be excellent for her. So yes there is a LARGE disconnect somewhere. Her local onc gave her only a few months without chemo and told her maybe 2-5 years if it works and still holds that prognosis despite a call from Dr. Kemeny and a change to my moms treatment from FOLFOX + Avastin to Folfori + Erbutix so that way she is off the avastin due to bleeding risk in surgery and telling them the new treatment plan. Its crazy!

Oh, my mom is scheduled to visit MSK again in late April to meet with two surgeons and Dr. Kemeny again. She just had her baseline scan which showed more shrinkage of her liver mets and down to only 3 measurable from 10. She doesn't have lung mets so her situation isn't 100% the same but I believe that HAI is an excellent choice if not THE best choice outside of getting into a clincal trial and hoping that it works and you can generally only get into those here in the US if you have failed treatment in most cases. MSK also has the top surgeons when it comes to mCRC as there surgeons perform a volume of surgeries more then any other institution.

gfpiv
Posts: 156
Joined: Tue May 25, 2010 9:24 pm

Re: Systematic chemotherapy + HAI?

Postby gfpiv » Mon Mar 12, 2018 9:56 pm

NJF, glad to hear you didn't just take your first oncologist's opinion as gospel, and decided to better educate yourself on options. Honestly, even if a patient turns out not to be a candidate for HAI...Sloan Kettering is either the #1 or #2 cancer center in the U.S., so you can't go wrong by getting a second (or third) opinion from them. You also make a good point - the success rate of HAI surgeries and treatments are highly correlated to the number of procedures that a given center has performed...again, likely a contributing factor as to why HAI at MSK has been so successful, whereas many/most other oncs don't even consider it as a viable treatment option.

Lea, I'd be happy to have a conversation with you about your mum. Just sent you a PM.

-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

mariane
Posts: 632
Joined: Sun Sep 13, 2015 6:16 pm

Re: Systematic chemotherapy + HAI?

Postby mariane » Mon Mar 12, 2018 10:32 pm

Hi Lea,
I have sent you priv.

I am not located in Europe/Poland. Not since my diagnosis. I moved to the US in 2015.This summer I hope to visit Poland again. I will pass Germany on my way home.
Talk to you soon. :)
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

Re: Systematic chemotherapy + HAI?

Postby Lele88 » Tue Mar 13, 2018 2:22 am

Thank you so much!!

Gfpiv I have received your message, Mariane I haven't received yours but I will text you now.

Your help is really appreciated :)

Lea


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