to HAI or not ... anyone regret it ???

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Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

to HAI or not ... anyone regret it ???

Postby Monimom » Thu Sep 16, 2021 1:50 pm

Has anyone regretted going this route??? my DH is a candidate for this with sigmoid resection but because his tumors have become chemo resistant he is having a difficult time deciding if he wants to go through with it , he's concerned it "wont be worth it " has anyone had this done after exhausting all chemo ?? whats the colon resection & port placement recovery like ? is it true you cannot lift more than 10 lbs with the pump?? please offer any advice, and encouragement .. thank you
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

User avatar
ginabeewell
Posts: 517
Joined: Wed Oct 24, 2018 10:30 am

Re: to HAI or not ... anyone regret it ???

Postby ginabeewell » Thu Sep 16, 2021 3:22 pm

There was one active member here whose husband did it, and had a bad experience and I know she regretted it. I cannot recall her name however.

I’m curious why they think the HAI pump would work if he’s grown resistant to chemo. Are they planning to use a different type?

Once it’s installed, it’s not a particularly difficult thing to live with, just requires filling or flushing every 2-3 weeks. I live life pretty normally, don’t have weight lift restrictions or anything else. I think strenuous exercise isn’t recommended but even then if your husband is active they can do the placement with that in mind.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

Re: to HAI or not ... anyone regret it ???

Postby Monimom » Thu Sep 16, 2021 5:55 pm

Thank you for replying, when we met with the colon surgeon he explained about the chemo resistance... my dh's tumors have also mutated from kras wild to kras .. this was of concern to the surgeon.. the HAI pump onc said the chemo is different because its stronger and directed to the tumors..
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

User avatar
Jack&KatiesMommy
Posts: 638
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: to HAI or not ... anyone regret it ???

Postby Jack&KatiesMommy » Fri Sep 17, 2021 10:30 pm

My liver tumors were all over my liver after I had what appeared to be a great response to chemo (the really large tumors in my liver shrunk greatly) but when they went in to resect what was left of the large tumors they found dozens and dozens of tiny tumors throughout my entire liver. The MDA surgeon said that there was nothing more that he could do and that it was unlikely that the chemo would ever eliminate all of this cancer as the tumors did not respond to all of the chemo I had undergone. Dr. Kemeny at MSK said she thought she could help me. I had the HAI pump implanted and my colon resected at the same time. Within one year, I was undergoing a second liver resection and found all of those tiny tumors were gone and that the tumor that remained was completely dead. That occurred in 2014 and I have not had any cancer in my liver since. (I have dealt with lung mets...but I am still here 10 years after my initial diagnosis where I was told that I had 12 months to live with the most aggressive treatment. The HAI pump saved my life.
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

kandj
Posts: 312
Joined: Sun Sep 27, 2015 11:29 am

Re: to HAI or not ... anyone regret it ???

Postby kandj » Sat Sep 18, 2021 4:05 pm

My husband had the HAI (codman version) placed in Dec 2015. Like Cynthia above, DH was told he had extensive liver involvement. MDA wouldn't even consider treating him in hopes of getting a liver surgery (that is how extensive and large they were). We were basically told to go home, do chemo till it doesn't work anymore. At MSK they said they thought they could get him to a liver resection. And they did, 5 months later. He has had 2 recurrences, but with far less tumors. He's currently having IMRT on those (has had radiation before on the liver and it kept it gone for 4 years). He has also had 2 lung resections, and SBRT on a pancreatic node and an adrenal met (tried RFA on that sucker and he had a hypertensive crisis and a heart attack!). Not sure where your DH would get his pump, but we have nothing but good things to say about MSK. Every part of the team to keep my husband alive has been top notch. As for restrictions, were weren't told anything about lifting anything. He was told not to run (not a problem!) or go downhill skiing. I think someone else here was a runner and their surgeon put a few extra stiches in place to keep that catheter safe.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 2/2021 peripancreatic node zapped
into triple digit chemo rounds

Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

Re: to HAI or not ... anyone regret it ???

Postby Monimom » Sun Sep 19, 2021 12:44 pm

WOW !! Thank you all for your replies, I admittedly am ashamed that we are having so much trouble deciding this, as I know surgery is the ultimate way to get more time after this awful diagnosis. I haven't updated my signature in a long time, back in 11-2019 after the referrals from many people on various forums, we went to MSK and had met with Dr. Kemeny, my husband at that point had what appears to be 2 nodules in his lungs that are perceived to be mets, at the time his local onc had suggested starting Folfiri & Vectibix, Dr. Kemeny felt as though that was a good plan and that the lung mets likely made the HAI therapy a non option,, so he did the regimen for 8 months and it was looking promising, his cea had dropped to 7.5 (at dx it was over 3000) then one month it went up to 10, they did a scan and he had a new nodule... his onc wated to do a couple more rounds to see if it continued.. and it did..she finally did a liquid biopsy and learned he was no longer kras and braf wild. he mutated to kras and braf.. he has only 2 drugs left to use, so we reached out to Kemeny again... even though the lung mets are still there an a bit bigger they say they are stable so this visit she had more of a why not you have exhausted all systemic chemo that will have any real effect.. she referred to colon surgeon , who we met with, he was very informative and explained alot, said the sigmoid resection is straightforward ...we informed him of our reluctance which he completely understood, actally has us waiting until Oct so my husband can get the pump that goes one month between fills..., we understand no one knows how things will go .. so we're trying to understand what the efficacy of this will be when the outcome is really unknown... he explained the chemo resistance and that my husbands cancer has mutated etc.. he said the chemo is the same as what hes already had... I inquired about that with Dr Kemeny, she was quite abruptly said no it isn't .. its MUCH stronger... My husband has never has any surgery , only port a cath placement he's very nervous and quite reluctant so i'm trying to make sure we make a completely informed decision with realistic expectations, we have no doubt about the care at MSK is has already seemed outstanding compared to the local treatment , and feel beyond blessed we have the abiltiy to have Dr. Kemeny & Dr. Paty, if he agrees to this does anyone have any advice for me as to where I can stay in NY will hes in the hospital?? we live 4 hours from there but I dont want to drive back and forth... thank you soo much again
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

krs029
Posts: 1
Joined: Wed Nov 04, 2020 10:25 am

Re: to HAI or not ... anyone regret it ???

Postby krs029 » Mon Sep 20, 2021 4:23 pm

Hi:

My DH was just determined to be candidate for HAI at MSK and he's doing it, but our decision was much less complicated than yours. He has not had any growth in his remaining liver tumors and only one has shrunk slightly over his last couple of scans. They are also doing a colon resection as well as removing his spleen and gallbladder. We are going to stay at the Helmsley Medical Tower, it is very close to MSK. Good luck!!
DH (now 54yo) dx 03/2020, stage IV with multiple liver mets, 3-4 lung nodules
KRAS WT, BRAF? MSS/MSI?
Folfox (3 cycles) 04/2020--5/2020
Folfox + Avastin 1 cycle 05/2020
CT Scan 06/2020: colon tumor almost gone, lung nodules unchanged, liver tumors almost doubled
FOLFIRI + Avastin 06/2020- present
CT Scans 09/2020 & 11/2020: liver tumors decreasing, no change in lung nodules, CT Scan 02/2021: one liver tumor unchanged and the rest decreased slightly, lung nodules unchanged.

Vana3
Posts: 53
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: to HAI or not ... anyone regret it ???

Postby Vana3 » Sat Sep 25, 2021 12:53 am

I work with MSK and had a liver resection there. My advice is go there, try it, you just never know. My doctors there are very kind and if they are willing to do the surgery and the Hai pump that is saying something because they say no to a lot of people too.
Wishing you success if you move forward with it all.
Take good care
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10


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