Treatment at MSK

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AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Treatment at MSK

Postby AlexandraZ » Sat Sep 07, 2019 3:27 am

Hi everyone,

Based on their great success treating several people on here, I've decided to get to MSK with my boyfriend for a second opinion. (liver and lung mets, about 50% reduction in size after 8 cycles of FOLFIRI + Vectibix. Just completed 12th cycle and hoping for a chemo break after a CT scan next week) We live in Denmark and would fly to NYC for a face to face appointment. First step for me is to gather all his medical records, chemo records, CT scans, etc (I got a long list of records needed), and translate them all to English. Should be pretty straight-forward for the most part. I've been reading his journal online since the beginning, so I'm pretty familiar with all the jargon by now. Will definitely take some hours though!

I would love to know more about anyone's experiences at MSK and specifically with Dr Kemeny! Those of you who have/had her as your doctor, how did you manage that? Was it difficult to become her patient?

How long did you have to wait for your first appointment? How long do you think we'll need to stay in NYC for the second opinion?

The other thing is, in Denmark all health care is free, as we live in a welfare state. So we have no extra medical insurance, which means we would pay for everything out of our pockets. ANY idea of how much it would be for an HAI pump/liver resection if we get so lucky? I know it is probably a massive amount of money, but I'd love to know what kind of amount we are talking about. :? If they think they can help Jesper we'll work out the money somehow.

Any information is much appreciated! I don't know much about the whole system in the US, so any stories/data/info about MSK and Dr Kemeny would be great!

Ml,
Alexandra
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

annieliz
Posts: 38
Joined: Fri Jul 26, 2019 5:13 pm

Re: Treatment at MSK

Postby annieliz » Sat Sep 07, 2019 10:49 am

Hi,

I am currently a patient at MSK; however, I don't know enough about the questions you asked to give you good information. What I can say, is that once I made the first call to them, everything proceded very quickly.

On the MSK website, they have a section devoted to international visitors with numbers you can call to get the answers to all of your questions. It looks like they help out with accommodations, transportation to and from airports, in addition to providing financial information. Here is the link https://www.mskcc.org/experience/become ... l-patients

Sorry I don't have more details from personal experience, but i think you will find what you need on the website and by calling them.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3
8/16/19 - 11/23/19 FOLFOX - 8 rounds
11/6 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
28 days Xeloda and radiation starts 12/16/2019

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: Treatment at MSK

Postby kandj » Sat Sep 07, 2019 1:03 pm

AlexandraZ wrote:Hi everyone,

I would love to know more about anyone's experiences at MSK and specifically with Dr Kemeny! Those of you who have/had her as your doctor, how did you manage that? Was it difficult to become her patient?


We called MSK after our second opinion at MD Anderson ended in a big fat no. Gathering the paperwork was a bit of a hassle. I had to hound a few offices to send the info over. After that got sent over, they reviewed it and said she would see DH.

How long did you have to wait for your first appointment? How long do you think we'll need to stay in NYC for the second opinion?


From when we called MSKCC to when DH was sitting in her office was 28 days. So it was a very fast process. Half that time was getting the right info over to her office from various places. We flew in on a Saturday I think, and left the day of the appointment or the next day. So 2-4 days.

The other thing is, in Denmark all health care is free, as we live in a welfare state. So we have no extra medical insurance, which means we would pay for everything out of our pockets. ANY idea of how much it would be for an HAI pump/liver resection if we get so lucky? I know it is probably a massive amount of money, but I'd love to know what kind of amount we are talking about. :? If they think they can help Jesper we'll work out the money somehow.


the hard part about guesstimating procedure costs here in the US is that the amount they bill insurance is often highly inflated and then the number the insurance pays is much less. Then the patient pays their co-pay, which is anywhere from 0-40% of the insurance cost.

I think the ball park for DH was $125,000 billed, but about $20,000 when insurance paid.

Any information is much appreciated! I don't know much about the whole system in the US, so any stories/data/info about MSK and Dr Kemeny


Everyone we have met at MSKCC has been helpful and kind. From the Janitors to the Department Heads! You will be going to a lot of appointments and meeting a lot of people in those two days for scans and Drs. appointments. Keep something with you to take notes in. Dr. K's team is very efficient. This appointment is the one where you will spend the most time with Dr. K and even then it isn't a lot. While it will seem brief (and it is!) the behind the scene events are not. They have weekly meetings with all the doctors and surgeons and talk about the cases. They discuss strategies and what the best way to tackle your cancer is. If your partner hasn't had Avastin or another drug they need to be off for a certain amount of weeks, or chemo recently they will probably schedule surgery within the following 2-4 weeks.

Lastly, please get in touch with the MSKCC social work team. The income guidelines are fairly high for help with payments. I believe it is something like 500% above the poverty line. Which is like $80k for a 2 person household. They have a large endowment and are able to help people out. Also, to save on cabs, we like to stay down by the main hospital and then take the shuttle bus from there to her office in midtown. It is, however, only about a 20-25 min walk from the main hospital to her office. We usually walk it if the weather is nice and the appointments aren't too early
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
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
New spot seen in lungs and adrenal gland 11/2019

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: Treatment at MSK

Postby AlexandraZ » Sat Sep 07, 2019 2:32 pm

kandj wrote:
Everyone we have met at MSKCC has been helpful and kind. From the Janitors to the Department Heads! You will be going to a lot of appointments and meeting a lot of people in those two days for scans and Drs. appointments. Keep something with you to take notes in. Dr. K's team is very efficient. This appointment is the one where you will spend the most time with Dr. K and even then it isn't a lot. While it will seem brief (and it is!) the behind the scene events are not. They have weekly meetings with all the doctors and surgeons and talk about the cases. They discuss strategies and what the best way to tackle your cancer is. If your partner hasn't had Avastin or another drug they need to be off for a certain amount of weeks, or chemo recently they will probably schedule surgery within the following 2-4 weeks.

Lastly, please get in touch with the MSKCC social work team. The income guidelines are fairly high for help with payments. I believe it is something like 500% above the poverty line. Which is like $80k for a 2 person household. They have a large endowment and are able to help people out. Also, to save on cabs, we like to stay down by the main hospital and then take the shuttle bus from there to her office in midtown. It is, however, only about a 20-25 min walk from the main hospital to her office. We usually walk it if the weather is nice and the appointments aren't too early


Wow, thank you so much for all that data! That's much better than what I had feared. All right, I'd better get busy translating half a year's worth of medical journal! :D

Amazing that they were able to remove so many mets from your husband's liver!! It sounds like their surgeons are extremely competent. Fingers crossed over here!!!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Treatment at MSK

Postby Rock_Robster » Sat Sep 07, 2019 8:42 pm

It’s a great question Alexandra, as another non-US’er I’ve been wondering that myself too. I’ve worked on the assumption - with very little basis - of at least $100k all-in for the HAI treatment, maybe more like $200k with surgeries. I found one site that quoted typical liver surgery cost in the range of $40-60k without complications or the MSK factor. I could be easily out by a huge margin though particularly given the insurance vs self-pay angle, and I’d be fascinated to see how close my guess was. In any case I’m sure their international centre can give you better estimates than this!

The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.

One other thing to perhaps consider - there is a trial of the HAI pump at Erasmus MC in Rotterdam. It’s using the same drug I believe (FUDR) but a German-made pump rather than the Medtronic. I understand they have been liaising with MSK in setting up the trial. I don’t know what availability is like but it could be a helluva lot easier from Denmark... http://www.chemopomp.nl

Best of luck!
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Treatment at MSK

Postby MetastaticEquilibria » Sun Sep 08, 2019 1:52 am

Rock_Robster wrote:It’s a great question Alexandra, as another non-US’er I’ve been wondering that myself too. I’ve worked on the assumption - with very little basis - of at least $100k all-in for the HAI treatment, maybe more like $200k with surgeries. I found one site that quoted typical liver surgery cost in the range of $40-60k without complications or the MSK factor. I could be easily out by a huge margin though particularly given the insurance vs self-pay angle, and I’d be fascinated to see how close my guess was. In any case I’m sure their international centre can give you better estimates than this!


I asked them about this once, and vaguely remember a number around $200,000, might have been less, but my notes are not with me now. I can check my notes next week, though Alexandra can call them sooner than that. They do give rough prices over the phone for cash customers if you call their international patient line.

The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.


That is a big issue. They say they will work with your local hospital, so if your local hospital is willing and able to do the FUDR refills, that could help a lot with logistics and cost.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Treatment at MSK

Postby Rock_Robster » Sun Sep 08, 2019 2:28 am

MetastaticEquilibria wrote:
Rock_Robster wrote:The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.


That is a big issue. They say they will work with your local hospital, so if your local hospital is willing and able to do the FUDR refills, that could help a lot with logistics and cost.

Indeed I was wondering about this solution too. If I went down the “move to USA” path I may have an option to live & work in Houston, which from what I can tell has significantly cheaper housing costs than NYC, and a direct flight. Obviously not super-close, but at the end of it a flight is a flight, really. Hopefully there would be a competent hospital in the area that MSK is willing to collab with and save me some money & travel. Anyway I’m at risk of hijacking Alexandra’s thread so i’ll shut up now :)
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: Treatment at MSK

Postby AlexandraZ » Sun Sep 08, 2019 3:11 am

Rock_Robster wrote:It’s a great question Alexandra, as another non-US’er I’ve been wondering that myself too. I’ve worked on the assumption - with very little basis - of at least $100k all-in for the HAI treatment, maybe more like $200k with surgeries. I found one site that quoted typical liver surgery cost in the range of $40-60k without complications or the MSK factor. I could be easily out by a huge margin though particularly given the insurance vs self-pay angle, and I’d be fascinated to see how close my guess was. In any case I’m sure their international centre can give you better estimates than this!

The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.

One other thing to perhaps consider - there is a trial of the HAI pump at Erasmus MC in Rotterdam. It’s using the same drug I believe (FUDR) but a German-made pump rather than the Medtronic. I understand they have been liaising with MSK in setting up the trial. I don’t know what availability is like but it could be a helluva lot easier from Denmark... http://www.chemopomp.nl

Best of luck!
Rob


Thanks Rob! Yikes, that's a lot of money. But that's the kind of ballpark figure I was expecting. I guess we're lucky it's all free here in Denmark. But then, how lucky are we if we need to search elsewhere for better treatment? (while still paying exorbitant taxes... Sorry, that belongs somewhere else in a different forum :wink: )

I'm curious about the logistics too! We have friends in the area and could sublet our home here, so it would't be impossible for us to relocate for a while. But it would of course be an additional challenge.

Thanks for the data on the trial! I think what we'll do is get Jesper's new CT scan this week and plan on going to MSK for a second opinion. If they recommend the pump, we'll look into the Rotterdam trial. If they deem his liver resectable, we'll of course gather all the funds we can and go for it. I wonder if they would do a liver resection in spite of his lung mets. I keep hearing conflicting data on this point - some say they won't operate unless they can remove all visible cancer, others say lung mets are less of a threat than liver mets and that if they can resect the liver then that's best.

Don't worry about hijacking my thread, haha! I also want as much info as possible, so go ahead and post all you want. I'll be happy to follow along!

Best of luck to you too. :)

Alex
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Treatment at MSK

Postby MetastaticEquilibria » Sun Sep 08, 2019 3:33 am

It might be a good idea to look into eligibility for the Rotterdam trial while waiting to see MSK, so you have full information on whether that fall-back option exists or not. You may need to make a decision in a hurry by the time you see MSK.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: Treatment at MSK

Postby AlexandraZ » Sun Sep 08, 2019 3:43 am

MetastaticEquilibria wrote:It might be a good idea to look into eligibility for the Rotterdam trial while waiting to see MSK, so you have full information on whether that fall-back option exists or not. You may need to make a decision in a hurry by the time you see MSK.


Good point. I'll look into it. Thanks! :)
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Treatment at MSK

Postby Rock_Robster » Sun Sep 08, 2019 7:57 am

AlexandraZ wrote:
MetastaticEquilibria wrote:It might be a good idea to look into eligibility for the Rotterdam trial while waiting to see MSK, so you have full information on whether that fall-back option exists or not. You may need to make a decision in a hurry by the time you see MSK.


Good point. I'll look into it. Thanks! :)

I just got around to reading the Erasmus study documents properly, and it seems that extrahepatic disease and prior liver resection are both exclusion criteria. I guess that rules us both out unfortunately. Still I guess it can’t hurt to discuss with the investigators - the rules might be more nuanced than on the website. Best of luck.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

User avatar
ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: Treatment at MSK

Postby ginabeewell » Sun Sep 08, 2019 9:48 am

Rock_Robster wrote:
The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.



The six months is for mop up chemo; so if you get the pump in hopes of achieving resection it could be more than that. Right now I’m on track to be getting pump chemo about a year between pre-resection and mop-up chemo.

I get my pump filled with chemo every four weeks in NY. They flush it and fill it with saline two weeks later locally, in Chicago. I get a blood test a few days before I fly to be sure I am cleared for pump chemo so I don’t take a trip for nothing - only needed to make that mistake once!

The pump I have heard stays in for more like 5 years after treatment so you definitely would want Medtronic to train a local facility. Luckily they are willing if you can find a local treatment center to work with you.

The net is that I don’t think you need to live in NY to get treated there, depending on where you’re coming from I suppose.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

boswind
Posts: 71
Joined: Fri Apr 11, 2014 12:04 pm

Re: Treatment at MSK

Postby boswind » Mon Sep 09, 2019 5:14 pm

kandj wrote:
We called MSK after our second opinion at MD Anderson ended in a big fat no. Gathering the paperwork was a bit of a hassle. I had to hound a few offices to send the info over. After that got sent over, they reviewed it and said she would see DH.
...


Hi kandj,

Could you clarify " ... after our second opinion at MD Anderson ended in a big fat no."? Do you mean that MD Anderson did not accept you for seeking the 2nd opinion?

Thanks,
01.24.14 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.14 Completed 5-week Radia+Xeloda
05.07.14 Had surgery
02.25.15 CT showed stage 4.
03.15 - 08.15, folfox + Avastin
08.15 - 07.17, 5FU+leucovorin+Avastin
07.17 - 01.18, Folfuri + Avastin
02.18 - 03.19, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
MSS, KRAS wt, BRAF wt
03.19 - 05.19, Keytruda
05.19 - 9.19, Folfox+Avastin
10.22.19 - rechallenge Centuximab+Irinotecan

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: Treatment at MSK

Postby kandj » Mon Sep 09, 2019 8:16 pm

boswind wrote:
kandj wrote:
We called MSK after our second opinion at MD Anderson ended in a big fat no. Gathering the paperwork was a bit of a hassle. I had to hound a few offices to send the info over. After that got sent over, they reviewed it and said she would see DH.
...


Hi kandj,

Could you clarify " ... after our second opinion at MD Anderson ended in a big fat no."? Do you mean that MD Anderson did not accept you for seeking the 2nd opinion?

Thanks,


MD Anderson (which is literally right down the street from us) did scans, met with the liver surgeon, did the whole rigamrole, and they told us DH was not a surgical candidate, the pump was old technology (so is the wheel, and yet, we still use that!) and that Dh should just do chemo ad hope to get to surgery from that. But that was a 5% chance of happening. Called Dr. K's office from the lobby while waiting for our car.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
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
New spot seen in lungs and adrenal gland 11/2019

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: Treatment at MSK

Postby kandj » Mon Sep 09, 2019 9:20 pm

AlexandraZ wrote:
Amazing that they were able to remove so many mets from your husband's liver!! It sounds like their surgeons are extremely competent. Fingers crossed over here!!!
[/quote]

It was amazing. I think Dr. DeMatteo (who is no longer at MSKCC, he is the chair of surgery at the med school at Univ of Penn now) told me he stopped counting at 15. A lot of them were little surface mets they zapped. DH did have a recurrence 15 months later and then had radiation on those. We are about 21 months out from that. I have heard nothing but amazing things about Dr. D'Angilica who does a lot of the surgeries involving the liver. Dr. Kingham too. We did meet with Dr. D'angilica when DH had his recurrence and he was not comfortable doing surgery again. Thankfully SBRT was an option and those mets treated with radiation seem dead.

I don't want to mislead you on the cost. It is high. Each visit we see about $20k come across the insurance for scans and meds. We don't have to cover beyond our out of pocket max with insurance, which is $5,000 for us a year. I know their social work program is amazing though and have heard a lot of people helped by it. We are able to afford our out of pocket max though, we budget for it yearly and we are lucky that DH's parents help with costs of travel. I have never sought out the help of the social workers because we figure we can afford it and to leave it for someone in more dire need then us. The cost for us means one less vacation, not no groceries for the week or not making rent.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
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
New spot seen in lungs and adrenal gland 11/2019


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