1st bad scanning... advice please!!

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ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: 1st bad scanning... advice please!!

Postby ginabeewell » Mon Nov 18, 2019 6:43 pm

radnyc wrote:My point is that one shouldn’t hang all hope on having her as your oncologist and no one else. I’m certain that all their oncologists are ready and able and probably have a much better bedside manner.


I think this is a very good point. Maybe especially concerning bedside manner! I believe they all use her algorithms, and I’m sure there’s benefit to working with someone who’s not powering through 50+ patients a day.

My fingers are crossed that the team is willing to take Jesper on for treatment. I know JulieJ had lung mets back when she was diagnosed and they accepted and successfully treated her!
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

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Mon Nov 18, 2019 6:54 pm

ginabeewell wrote:
radnyc wrote:My point is that one shouldn’t hang all hope on having her as your oncologist and no one else. I’m certain that all their oncologists are ready and able and probably have a much better bedside manner.


I think this is a very good point. Maybe especially concerning bedside manner! I believe they all use her algorithms, and I’m sure there’s benefit to working with someone who’s not powering through 50+ patients a day.

My fingers are crossed that the team is willing to take Jesper on for treatment. I know JulieJ had lung mets back when she was diagnosed and they accepted and successfully treated her!


Thank you for your finger-crossing! I'm also happy to hear that you agree about Dr. Kemeny, because I was a little stressed out about making sure she would be the one to see his scans and so on.

Rachelfromnyc also has lung mets and enlarged distant lymph nodes, so I know MSK is treating patients with similar diagnoses. All fingers crossed that they accept him based on his great chemo response so far as well as his being young and strong and resilient!
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!

rachelfromnyc
Posts: 18
Joined: Fri Oct 04, 2019 11:32 am

Re: 1st bad scanning... advice please!!

Postby rachelfromnyc » Mon Nov 18, 2019 7:53 pm

Hey radnyc- if you don't mind, can you share which oncologist you saw at MSK? No pressure, just wondering.

I am having the opposite experience in terms of bedside manner with my oncologist. It's always, you're doing great and you're looking great! Which I'll never be tired of hearing those things but I do know the severity of situation and sometimes I want to be like, let's be real for a sec! She says it's still early for me and there's still several things we can do should things not pan out as planned. Well ok then, even though its the opposite of my nature, I'll try to be more go with the flow.
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

radnyc
Posts: 411
Joined: Tue Apr 06, 2010 6:32 pm

Re: 1st bad scanning... advice please!!

Postby radnyc » Mon Nov 18, 2019 8:41 pm

rachelfromnyc wrote:Hey radnyc- if you don't mind, can you share which oncologist you saw at MSK? No pressure, just wondering.


Hi Rachel, I’ll send you a pm with my onc’s name. But, I’ll just say that he was always direct, not really beating around the bush. But, honest and was upbeat when things went well. I have no experience with Kemeny, but from the comments she seems very difficult to deal with. I’ve always said oncology is the hardest of the medical professions, I can’t imagine knowing that a large proportion of my patients won’t make it. So I really can’t blame some of them for being hard to be with.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

FightCRC
Posts: 40
Joined: Fri May 25, 2018 10:39 pm

Re: 1st bad scanning... advice please!!

Postby FightCRC » Tue Nov 19, 2019 1:15 am

I don't disagree about the bedside manner. But, speaking for myself, I consider bedside manner to be overrated, at least relative to skill/results. I don't need a buddy; I have plenty of friends already. For this, I need a bulldog.

Our first oncologist had a wonderful bedside manner. She also basically sent us home to die. Dr. Kemeny never asks us how our day is going, how our family is doing (she has no idea we even have a family). etc....she doesn't care to know anything about our personal lives. But she gave us hope when no one else would. I'll take that over the doctor with the superior empathy training (but dismal track record with keeping patients alive).

And also, if you're going to MSK for HAI...you really should see Dr. Kemeny before any others. We know from other patient reports that even at MSK, not every CRC onc is on board with HAI. It's pretty much Dr. Kemeny, Dr. Louise Connell, and Dr. Andrea Cercek for HAI.

Please note, I don't mean to suggest that Dr. Kemeny is the end-all, be-all onc for all things CRC. But HAI is her absolute specialty. And, right now, no one else is at her level.

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Tue Nov 19, 2019 10:10 am

Ok so I finally got an answer from MSK! Kind of good and bad but mainly good. The good news is that they will accept Jesper and do want to see him for a face-to-face consultation. However, based on the recent updates, their clinical team is recommending the same as our team here - FOLFOX. They say we can come now if we want the whole second opinion thing done, but regardless of whether or not his liver would be deemed resectable, their first step would be FOLFOX. So the representative said that it's up to us if we want to come now and be told to do FOLFOX and then come back for a follow-up consultation in a few months or do a few rounds of FOLFOX and then come after that.

I'm leaning towards first doing maybe 4 rounds of FOLFOX and getting a new scan. Going to MSK now would further delay treatment and add unnecessary expenses. I'm all for spending all the money we need to spend, but why go now just to be told to go ahead with FOLFOX? So I think we'll go ahead and start FOLFOX on Monday and I'll keep translating all his new records so we can leave as soon as we have his next scan, which will hopefully show good regression again. Does that sound like a good idea to you guys?
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!

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ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: 1st bad scanning... advice please!!

Postby ginabeewell » Tue Nov 19, 2019 12:11 pm

Did they say anything about the HAI pump?

In my case they similarly wanted me to continue FOLFOX at Northwestern. But scheduled me for pump installation at MSK once that was done.

Personally I think I would do four rounds FOLFOX at home and see if you can schedule your scan and a follow up at MSK right after that. They will want to do their own scan, but they can do it one day (even on a Sunday) and see you the next.

You would want to schedule follow ups with an oncologist and a surgeon.

If you push, you SHOULD be able to get this on the books now and if you need to adjust by a week or two if Jesper’s four rounds don’t take exactly 8 weeks, you’ll be able to later.
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

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Tue Nov 19, 2019 12:19 pm

ginabeewell wrote:Did they say anything about the HAI pump?

In my case they similarly wanted me to continue FOLFOX at Northwestern. But scheduled me for pump installation at MSK once that was done.

Personally I think I would do four rounds FOLFOX at home and see if you can schedule your scan and a follow up at MSK right after that. They will want to do their own scan, but they can do it one day (even on a Sunday) and see you the next.

You would want to schedule follow ups with an oncologist and a surgeon.

If you push, you SHOULD be able to get this on the books now and if you need to adjust by a week or two if Jesper’s four rounds don’t take exactly 8 weeks, you’ll be able to later.


Yeah, they said the HAI pump most likely would not be offered to him. :( But maybe once he is stable again and his mets have shrunk more, they'll reconsider. Good idea to already pencil in an appointment! I'll push for that now so that everything is all set up. The representative said that with a second opinion, you are scheduled with an oncologist and not a surgeon. I really want a surgical consultation but it seems so difficult! Do you think I can request that once I get there, or do you have any other advice?
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!

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Tue Nov 19, 2019 12:19 pm

(deleted double post)
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!

User avatar
ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: 1st bad scanning... advice please!!

Postby ginabeewell » Tue Nov 19, 2019 12:37 pm

AlexandraZ wrote:
Yeah, they said the HAI pump most likely would not be offered to him. :( But maybe once he is stable again and his mets have shrunk more, they'll reconsider. Good idea to already pencil in an appointment! I'll push for that now so that everything is all set up. The representative said that with a second opinion, you are scheduled with an oncologist and not a surgeon. I really want a surgical consultation but it seems so difficult! Do you think I can request that once I get there, or do you have any other advice?


You are coming in from so far, I really think they may make an exception. It can’t hurt to push. I did the consult with Kemeny first and then Kingham a few weeks later. But there really isn’t any reason I couldn’t have met with them both the same day. You’re coming all the way from Europe!! You’ll do a CT scan and you will need a surgeon to tell you if Jesper is operable not an oncologist.
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

Siti
Posts: 97
Joined: Thu Aug 01, 2019 10:58 am

Re: 1st bad scanning... advice please!!

Postby Siti » Tue Nov 19, 2019 5:32 pm

Seems like you’re on the right track — if you do want a “face to face” consultation, I believe MSK offers a video call option. Would that help?
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

AmyG
Posts: 296
Joined: Tue Dec 25, 2018 8:08 pm

Re: 1st bad scanning... advice please!!

Postby AmyG » Fri Nov 22, 2019 11:41 am

He has a lot of liver mets, right? No mention of Avastin? Worked wonders for me!

I'm glad they are taking him on.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Fri Nov 22, 2019 1:14 pm

AmyG wrote:He has a lot of liver mets, right? No mention of Avastin? Worked wonders for me!

I'm glad they are taking him on.


Oh, great! He will be getting FOLFOX with Avastin starting on Monday. Hope it works as great on him as it did on you! Did any of your mets disappear or did they stay but shrink in size?
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!

AmyG
Posts: 296
Joined: Tue Dec 25, 2018 8:08 pm

Re: 1st bad scanning... advice please!!

Postby AmyG » Fri Nov 22, 2019 2:25 pm

I only had one met, but it was pretty big. After 7 rounds when they did my reaction, it was 95% necrotic and had shrunk quite a bit.

I had an amazing response to the drugs, I really hope he does too!

The Avastin will exaggerate the side effects of the rest of the drugs. Nosebleeds, hair loss, bruising, not healing after minor cuts, etc. But it was worth it.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Fri Nov 22, 2019 2:31 pm

AmyG wrote:I only had one met, but it was pretty big. After 7 rounds when they did my reaction, it was 95% necrotic and had shrunk quite a bit.

I had an amazing response to the drugs, I really hope he does too!

The Avastin will exaggerate the side effects of the rest of the drugs. Nosebleeds, hair loss, bruising, not healing after minor cuts, etc. But it was worth it.


Thanks Amy! 95% necrotic sounds amazing! I'll take it.

Jesper had Vectibix with FOLFIRI and those rashes were truly horrific. I feel like he won't mind nosebleeds and bruising if he can avoid that terrible rash. But time will tell! If it works, it's 100% worth it!!
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!


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