another HAI pump question and a short rant...

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

another HAI pump question and a short rant...

Postby Monimom » Mon Aug 10, 2020 6:20 pm

Hi all, today was my DH's appointment with Dr. to begin his Avastin/ Xeloda regimen... long story short , we still dont have the script.. i found out last week the Oncs office tried to utilize the pharmacy they're affiliated with instead of the one my DH's insurance co. uses (they KNEW his ins uses CVS specialty !!).. I learned of this last monday and contacted her office immediately to fax CVS pharm the script ,,, which according to the CVS wasn't done until this past Fri !! ,... and...the script was missing info ( how many to take) ,,,,they said reached out to Oncs office 2x Friday with no reply... I've made MANY phonecalls
so ....todays appointment the only thing that was done was bloodwork, , his Onc said its the pharmacy the pharmacy says its the Onc... .. so we have to wait for the script to get here and have ANOTHER appointment this week for him to get Avastin when he starts the Xeloda.... im beyond irritated with all of this... sorry and his Onc, I believe dislikes me because I laid it all out.... ok theres the rant... thank you
Pump question... I took the opportunity to ask his Onc at this appointent what the plan is ... meaning is her intention to just continue to give him regimen after regimen ? she says he's palliative and on maintenance (which I still cant' see the difference between that and curative it seems to be the same quantity/ and schedule)..
Sooo, I told her I have learned of the HAI pump and that its administers directly to the liver and that we are thinking of getting more info on having it done ... soooo heres where I can use some clarity for those of you with pump knowledge....... she said because both of his lobes have tumors it wouldn't be effective.... Can you tell me if this is a true statement ??? I personally think shes wrong but really have no clue

thanks for hanging in there reading this.... and thanks for any input !
Moni : )
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

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: another HAI pump question and a short rant...

Postby ginabeewell » Mon Aug 10, 2020 6:46 pm

That is not accurate. I had tumors in 80% of my liver when I started. The chemo took down the mass before I had the pump installed, but I still wound up doing two resections.

My best advice to you is don’t take pump advice from a center that doesn’t embrace them. Doctors are humans who recommend what they know best; so I have seen many who poo poo the pump just because they can’t confidently use it to treat patients.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

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https://weareallmadeofstars.net/favorite-posts

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Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: another HAI pump question and a short rant...

Postby Jack&KatiesMommy » Mon Aug 10, 2020 8:59 pm

Gina is right. I had dozens and dozens of tumors in every section of my liver. I got my HAI pump at MSK after my local oncologist said chemo was my only option. Within 6 months my liver was clear enough to do a resection of one side (the other side was clear) and 6 months later my liver was clear....and remains do today. I would not be alive today if I had listened to my local oncologist. The HAI pump and Dr Kemeny literally saved my life.

Cynthia
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,

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: another HAI pump question and a short rant...

Postby CRguy » Mon Aug 10, 2020 11:54 pm

ginabeewell wrote:My best advice to you is don’t take pump advice from a center that doesn’t embrace them.

I am adding this quote to my own "rules for taking doctor's advice ! "

don't take oncology advice from a surgeon
don't take surgical advice from a radiologist
don't take radiology advice from an oncologist
AND don’t take pump advice from a center that doesn’t embrace them
OR any reiteration or reordering of those facts !

...BUTT when the Onc blames the pharmacy and the pharmacy blames the Onc
I would be reluctant to take advice from either of them
JMO

Cheers and best wishes moving forward and getting things sorted out
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: another HAI pump question and a short rant...

Postby Monimom » Tue Aug 11, 2020 6:30 am

Thanks everyone for replying...

I figured she was not accurate, whether shes knowledgeable on the matter or not I don't know, I have gotten the impression from here since day 1 that she has ZERO plans on my DH having any chance at a resection, whenevr asked she would say I can get a liver surgeon to explain , (this seemed like more of a call her bluff statement to me) I have really begun to have a dislike for this practice, they claim to follow MSK (they have an alliance with them) we are about 2 hours away from NYC.. after I mentioned the pump and the direct vs systemic delivery , she then uttered both his lobes have tumors and she mumbled that she will give a referral if we want, I told her that we are looking at our options a bit down the road, as he is just getting ready to begin Xeloda, ( he just went back to work to try to keep our health insurance) He is really doing wonderfully, he feels good, aside from the neuropathy in his toes and fingertips. some areas have discolored on his toes, we told her but she doesn't seem concerned... is this normal from Oxaliplatin??

In regards to this Pharm / Dr. blame game...
my gut says it was the Dr. office.....
They wasted a week when they first tried to order through "their" specialty when our coverage clearly indicates where to get specialty drugs.
then sent the script missing important info last minute...

as a side note... when we first met with this Onc, and she told us the treatment plan, I asked specifically if there was an oral chemo he could use instead of the infusion, she said yes but its not as effective and side effects are hard....fast forward 16 infusions later and low and behold we ask for the oral so he can work, she obliges , so I again ask is it as effective as the infusion, her reply.... yes !!

As I stated , we started out with this Dr. not hand selected as my husbands diagnosis l (ike many's) was completely off guard in an urgent care for a back ache, so this was the center we were shuffled to, and in the shock of everything we have been going along with it ... for now I am trying to learn as much as I can about what our options might be, while trying to hold on to the insurance we have before he needs to be on SSDI...

Thank you one and all for your replies, they truly help
Moni : )
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

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: another HAI pump question and a short rant...

Postby juliej » Wed Aug 12, 2020 6:08 pm

CRguy wrote:AND don’t take pump advice from a center that doesn’t embrace them

WORD!!!!

I had tumors in all lobes of my liver and got the pump and it was VERY effective for me! His onc obviously doesn't know anything about it. I'm glad you're being proactive about this. Who cares what she or her practice thinks of you. Stay strong. Don't let her mislead you.

Hugs,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: another HAI pump question and a short rant...

Postby mariane » Thu Aug 13, 2020 9:21 am

Hi!
I had tumors all over the liver as well, badly located near important structures. The largest was 7.5cm. I was told by 3 oncologists that there is zero chance for me. I signed a consent form for palliative chemo. I found an info about Dr. Kemeny and HAI pump reading online forums. I ended up having 3 resections but I have been over 4 years NED. 5 years has passed since my diagnosis. I am seeing my kids grow as Dr. Kemeny promised me on my first appointment. They were only 6 when I got diagnosed. I wish you best of luck! Be persistent!
mom of now 14 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!

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: another HAI pump question and a short rant...

Postby boxhill » Thu Aug 13, 2020 7:22 pm

I **love** all of these stories of people not accepting sub par care.

My suggestion to you would be to get a new oncologist.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

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

Re: another HAI pump question and a short rant...

Postby Monimom » Fri Aug 14, 2020 5:05 am

Thanks so much for sharing your encouraging stories !!!! So please allow me to ask, how did this all take place, in other words, when you had the pump installed, first Dr. Kemeny decides if you are a candidate ? then you go to NYC to MSK ? and do you stay there for the duration of your treatments ? do you travel back and forth to MSK? Im trying to understand how this is facilitated, will we need to relocate?? and lastly but importantly .. is this covered by insurance ?
Thank you again
Moni : )
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: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: another HAI pump question and a short rant...

Postby Jack&KatiesMommy » Mon Aug 17, 2020 9:17 pm

I contacted Dr. Kemeny's office...told them my story and sent all fo my records in to her for review and consideration. Several weeks later they called and said that Dr. Kemeny had agreed to take my case and that I needed to come in for an appointment about a week later. I flew in to NYC and met with her. She told me that she thought she could help me (even though all other oncologists said that there were no options available.) We scheduled a meeting with the colon surgeon. Made surgery appointment for a month later. I flew in to NYC with my family. We sublet an apt. for two weeks. I had surgery to remove the primary tumor in my colon and place the HAI pump. I was in the hospital for a week (my husband and two children stayed in the apt.) When I was released my family got me settled in the apt and they went back to Ohio and I stayed in NYC for about 10 days for follow up appointments. I went home to Ohio about 3 weeks after the surgery....and flew back in to NYC every 4 weeks to have the chemo put into my pump and for CT scans. Every two weeks (two weeks after the MSK pump refill visit) my local oncologists' office emptied my pump and filled it with a saline solution (as per MSK's instructions). After about 4-5 months of liver pump treatment, I had a liver resection that removed half of my liver. It was successful. I continued on chemo through the pump for another 3-4 months. All of the time going to MSK every 4-6 weeks for pump fills and CT scans. I ended up with spots in my lungs and underwent about 14 radio frequency ablations on the spots to try to kill them all. (I was also on systemic chemotherapy during all of this.) This was over a 5 year period following my liver resection. I travelled to MSK every 6 weeks for bloodwork and CT scans and a reevaluation of the treatment plan. I ended up having part of my right lung removed in order to remove two lymph nodes that were cancerous. When some other lymph nodes seemed to be cancerous near the same spot, we tried chemotherapy again (Irinotecan) again and it didn't really work. But my local oncologist tried Keytruda (my cancer showed a moderate number of mutations which researchers were thinking may allow the immunotherapies to work in non-MSI patients). It worked and I am here over 9 years after being diagnosed and told that I had 12-22 months to live even if we did everything possible. My insurance (private through work) covered all of my medical care via MSK and Dr. Kemeny.
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,

hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Re: another HAI pump question and a short rant...

Postby hart2hart » Tue Aug 18, 2020 3:14 pm

My husband Pete would not be here today if not for the Hai Pump,
Dr. Kemeny and MSK.
Local Doctors almost killed him. That was 10 years ago! Life is good, so happy that we found Dr. Kemeny, MSK and The Colon Club!
Pete had the Pump removed not too long ago and now has been promoted to yearly scans! Hooray!
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: another HAI pump question and a short rant...

Postby kandj » Tue Aug 18, 2020 8:08 pm

Another one here that has a husband who would not be here without Dr. K! He just hit his 5yr cancerversary. We are still battling things, but he is here to battle them and he's living life.

As for DH, he has dozens of tumors as well. Every lobe was affected. He had HAI chemo for 6 months and then surgery. He had a great reaction to the chemo in the pump (but his liver got angry so after 2 or 3 post surgery treatments he had to go off it). He did have a liver recurrence 15 months later that was much smaller but unfortunately one was not a surgical candidate do to location. They did SBRT for those and he's almost 3 yrs post radiation. He's had lung and adrenal gland issues pop up but Dr. K takes the bull by the horns and gets you taken care of. I will say this, I would not wait. The longer he does other chemos, the more possible damage to his healthy liver. Time is of the essence, I would get the ball rolling.

As for travel, DH would travel there monthly to get pump chemo done when he was on it. Before COVID, it was every 2 months for scans as well. Since COVID it is all local scans and telemedicine. You can travel to NYS/NYC for appointments and not be subjected to the quarantine (just for the appts/procedures, other times you need to be in your hotel). You being so close though, you are probably not affected by the quarantine like us out of staters. We are in Texas, so if we need to go its going to be pretty hectic.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

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

Re: another HAI pump question and a short rant...

Postby Monimom » Wed Aug 19, 2020 5:41 am

Thank you ALL for replying, and giving such detailed info, this is such a unchartered territory for us, every detail helps !! I will be seeing what I can find out.
Thank you again !!
Moni : )
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

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: another HAI pump question and a short rant...

Postby mariane » Fri Aug 21, 2020 10:47 pm

Hi!
When I got diagnosed in June 2015 almost without symptoms; I was living happy, active life in Europe. My husband, who worked in the States called Dr. Kemeny's office for me. ( I was reading forums to find a trace of hope since I was given zero chance to survive past 2 years on chemo, and 3 months without it. I had my first surgery to remove the tumor in Poland before I started chemo in mid July 2015. Not a standard approach.) First call to NY wasn't successful. Nobody wanted talk to my husband. He tried again and a kind nurse agreed to show my scans and translated chart to Dr. Kemeny. She wanted to see me right away. I flew to NY 2 weeks after my big, open surgery and started chemo in August 2015 about 4 weeks after my primary tumor removal. I was put on FOLFIRINOX which is strong chemo coctail and worked very well. I was lucky to have complete pathological response. However, the dead tumors were still large and badly located. I had 3 liver surgeries: in October to place the pump and to remove pesky caudate lobe met, in January - to remove my largest tumor from my left lobe, originally it measured 7.5 cm) + ovarectomy due to suspicious cyst, finally the last few tumors from my right lobe. Somehow, I avoided the right lobectomy. My tumors shrunk suddenly and almost vanished by mid April 2016. Interestingly, they were the same size since from October to April after initial, huge shrinkage by over a half. In mid May 2016, 11 months after my diagnosis I was NED. I got light mop up chemo for 6 months after surgery and I have been off chemo since the fall 2016. I think the good choice of initial chemo is very important. All the best!
mom of now 14 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!

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: another HAI pump question and a short rant...

Postby cartech78 » Sat Aug 29, 2020 12:20 am

I had 23 tumors in my liver and the HAI pump got me operable. Thank God for Dr.Kemeny and MSK. The pump is a huge commitment but one that is worth it. When I first started this fight the first thing I did was researched other stage 4 patients did to hit NED. The pump was the common denominator in the majority of cases I found at the time. Have Dr.K help you find a place local to you that will be able to flush your pump in the off weeks. This will reduce your travel to NewYork to once a month. I had three oncologist 1 close to home at my local hospital who I did my systemic chemo with another one at University of Chicago where they flushed my pump and then Dr.Kemeny who gave the orders to the other 2. I made sure they all realized she was the boss of all my care. I didn’t need to because she will make that clear on her own- lol. Like I said it’s tough but very doable. The added plus to MSK is you will also have access to their surgeons now as well who are also some of the best and also aggressive. With the current pump they use, the Medtronic synchro med2 you will get chemo put in that will run for 2 weeks. You will then hopefully go local to a place that will fill your pump with saline/Heparin which will run for 2 weeks then the cycle repeats, back to MSK for more chemo in pump. You will also be doing systemic chemo at the same time during all that. I chose to do it at home in Illinois instead of MSK. Hope that all made sense.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20


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