New and in need of help please

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RBR000
Posts: 4
Joined: Thu Apr 20, 2017 12:41 pm

New and in need of help please

Postby RBR000 » Thu Apr 20, 2017 1:19 pm

First, I have to thank you for letting me read your blog for the last several months. It has been sometimes calming, sometimes frightening, and I'm not sure where I (and we) would be right now without it. So thanks.

My brother was diagnosed in early February with Stage 4 CRC. I'm not sure I know how to speak about this intelligently, but here goes.

He was diagnosed with MSS CRC with a large primary colon tumor and more than 5 liver mets. Genetic testing shows KRAS, APC (2) and TP53 mutations. After initial diagnosis he went to MDA, saw Drs. Kopetz and Vauthey, and began chemo (not sure the specific kind, but it included Avastin).

I read so much on this blog about MSK and Dr. Kemeny (thanks to you all) and after speaking with my brother he went to NY for a consult with her. He saw Drs. Kemeny, D'Angellica and Paty, got a complete workup and has been scheduled for an HAI pump, liver and colon resection in May.

He had a follow up with Drs. Kopetz and Vauthey yesterday, scheduled after his initial MDA visit. We told them about MSK; not surprisingly they are not keen on the HAI option and apparently prefer instead colon/liver resection and participation in a PDL-1 immunotherapy trial (subject to confirmation of his eligibility).

I've read just enough about clinical trials to be dangerous, which is to say I just don't know enough and despite the information here and elsewhere, I (we) don't know what to do: MDA and PDL-1 trial or MSK and HAI.

If anyone has any specific advice, we'd sure appreciate it.

Again, I'm really very grateful for all of the information that you guys share here, and for the support that this community offers.

Thanks very much,

R

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: New and in need of help please

Postby Lee » Sun Apr 23, 2017 5:09 pm

Hi and welcome, sorry no one has responded to you yet.

I did not have liver mets. Butt MSK and Dr, Kemeny is the BEST hospital and Dr for your brother. MDAnderson is a top notch hospital, butt for your brother's liver mets, Dr Kemeny is the one you want treating him.

Hope his helps,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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WriterGirl1969
Posts: 453
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: New and in need of help please

Postby WriterGirl1969 » Sun Apr 23, 2017 8:54 pm

Like Lee, I'm sorry to see you don't have more people responding just yet. Probably readers who haven't had that specific experience opt to let someone who has chime in.

That said, it might be important to note that there may not be any perfect answer to your question. It's hard when you get conflicting advice and recommendations. And what worked for one person might not work for the next. There are no sure things just yet with cancer treatment, although there have been some truly significant strides made. What you may end up receiving are positive and negative experiences with both options. The important thing will be to learn as much as possible about all of the benefits and detriments of both treatment options and about the doctors proposing them, and then for your brother to make an informed decision that feels as right as possible for him. Sometimes you have to stand up to doctors that are pushing their own agendas. Possibly you should ask the team at MDA to consult with Kemeny and team to see what they think of the proposed alternative treatment. You can have a "primary" in another hospital who directs the team that you work with. I would say that if Kemeny and team already set up one type of treatment and plans for surgery that they should at least be consulted by MDA if they are thinking to change those plans.

Hopefully the response will provide the reasons why or why not, and also give some advice. Maybe you want to call back to them yourself and let them know what your other team is saying and proposing, and that you'd like their feedback on this so that you can all make the right choices.

Whatever happens, best of luck to your brother and to you - and to the whole family. Keep us posted.

Hugs and prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

stu
Posts: 602
Joined: Sat Aug 17, 2013 5:46 pm

Re: New and in need of help please

Postby stu » Mon Apr 24, 2017 12:32 am

Hi,
When I read your post my initial reaction was that your brother is caught between two good options. That's a great place for a stage 4 patient to be. Sometimes it's a case of making a reasonable decision. There are no specific treatment protocols in a stage 4 setting , just judgement calls.
I live in the UK and the pump is not available here now. Whilst clinically the other specialists have reservations she does seem to get good outcomes from what I see. Dr K would probably have measurable outcomes . I am not sure if the immunotherapy will have but you could maybe measure the two against each other and see who is achieving the better success rate.
If he should not select the pump and purely for his encouragement my mum has not had chemo since2010 , never post surgery and has done well with surgery being the big guns in her treatment.
Thinking of you all,
Kind regards,
Stu
Last edited by stu on Mon Apr 24, 2017 10:23 am, edited 1 time in total.
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

Stanfordmom
Posts: 613
Joined: Wed May 14, 2014 1:32 am

Re: New and in need of help please

Postby Stanfordmom » Mon Apr 24, 2017 1:44 am

Hi
Sorry I don't visit the board as much as before and just saw your post tonight.

I would highly recommend HAI pump treatment under Dr. Kemeny's watch. She has "cured" quite a few people on this board with HAI pump chemo. Also even if you have recurrences later in liver, HAI pump chemo is always a good adjunct chemo to remove residue Cancer cells in your liver. So it is like an insurance policy and one extra option for your liver, always.

Also Dr. Kemeny will be the best fighter for your life. She is well respected at MSKCC and she could get surgeons and radiologists to help you very fast if you have recurrences (I had two in my case, but she and the surgeons took care of them).

Finally if years later, your brother is out of chemo options, he could always try immunotherapy. No trial now is refusing people to participate because of HAImpump implantation. Who knows, when your brother needs immunotherapy later, there may be some of them approved by FDA already.

Hope this is helpful and good luck with your brother's treatment!

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

mariane
Posts: 574
Joined: Sun Sep 13, 2015 6:16 pm

Re: New and in need of help please

Postby mariane » Mon Apr 24, 2017 7:43 am

I also do not check as often as I used to in the past.

I chose Dr Kemeny option and do not regret it. I went to MSKCC with 10+ mets in my my liver spread all over my liver. The largest was 7.5cm.... I heard that my mets were unresectable. I had 3 surgeries by Dr D'Angelica - he is excellent surgeon and a fantastic person. In May last year I achieved NED status - exactly a year after I heard from my first oncologist that I am uncurable and doomed to die within 2 years. I have twins - they were 6 at that time. I was broken.
Now almost 2 years from my diagnosis - I feel strong and healthy. I am off chemo. My scans were clear. I am not sure what future brings. I pray to stay here longer. Anyway I have received 2 good years with my kids already. It is very hard to live 3 months at a time - from scans to scans.

There is Cynthia here. She moved from MDA to MSKCC after unsuccessful liver resection. It was about 5 years ago.
There are many more who are 7+ years NED.
I heard from doctors that Dr Kemeny has many patients who are 20 years NED after HAI treatment.

Good Luck!
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, 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!

kandj
Posts: 200
Joined: Sun Sep 27, 2015 11:29 am

Re: New and in need of help please

Postby kandj » Mon Apr 24, 2017 9:31 am

First off I am so sorry your brother has received this awful diagnosis.

My husband was diagnosed in August 2015 and we too went to MDA (we live outside of Houston, we thought we lucked out there!). We were so disappointed in our meeting with the surgeon there. He basically told us to keep at chemo but there was little to no chance of DH eventually having a liver resection. He was dismissive of the HAI and dismissive of RFA as well.

We saw Drs. K, Paty, and DeMatteo less then a month later. They were far more optimistic. DH had his pump and LAR 6 weeks later. He had far too many tumors to remove then, we needed shrinkage first. After 5 months of the FUDR, DH had his liver resection in May 2016. A point the Dr at MDA said he would never get to. Dr. K's 5 year OS with the pump and resection blow any other cancer center out of the water. She gets results we did not even think were possible starting out.

I will also say I think the talent at MSKCC is far superior then MDA. I felt like the care team as a whole was more cohesive, caring, and professional.
wife to DH, Diagnosed at 36yo with stage 4 CRC August 2015 mom to 3 boys
numerous mets throughout liver, unresectable currently
Folfox +avastin aug 15-Nov 15
Lynch and MAP negative
Folfiri starting Jan 2016
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 3 Liver mets and one possible lung met. Focusing on Liver mets for now. Back on FOLFOX to get them shrunk!

RBR000
Posts: 4
Joined: Thu Apr 20, 2017 12:41 pm

Re: New and in need of help please

Postby RBR000 » Mon Apr 24, 2017 11:39 am

Hi Lee, Tracy, Stu, Sha, kandj and Mariane,

Thanks so much for your responses and support. I suppose you've experienced the sense of comfort that replies like yours provide, and I want you to know how much it means to me and my family.

We are also grateful to have '2 good options' (thanks for that Stu) -- one of the challenges is that he/we found much to like at both MDA and MSK, not least of which are the doctors. I think we've developed a better understanding of what each of the options represents -- risks and benefits -- and certainly appreciate the context that your personal experiences provide.

I expect a decision will be made within the next day or so, and for those interested I'll give you an update then.

In the meantime, I'll continue thinking very positive things about you all and wishing each of you the very best.

Thanks again,

Ricky

Stanfordmom
Posts: 613
Joined: Wed May 14, 2014 1:32 am

Re: New and in need of help please

Postby Stanfordmom » Wed May 10, 2017 6:31 pm

Ricky,

Thinking about your brother and your family. Have you reached a treatment decision?

Best wishes!

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

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Hannah Faulkner
Posts: 29
Joined: Tue Feb 14, 2017 3:14 am

Re: New and in need of help please

Postby Hannah Faulkner » Thu May 11, 2017 6:25 am

Sorry to hear about your brother diagnosis, hopefully you will make the right choice. Love and Prayers

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BeansMama
Posts: 957
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: New and in need of help please

Postby BeansMama » Thu May 11, 2017 7:26 am

Sorry to hear of your brothers diagnosis.

I have a couple of questions - I too am stage IV with a nasty liver met that up until now had been inoperable.

You said your brothers CRC was MSS? PDL-1 inhibitors such as Keytruda (which I am on and it is working for me) generally work better on MSI and MSI-high CRC. They have not been really proven to work well for MSS. It surprises me that they would recommend that treatment if he is MSS.

That being said, that is just my knowledge from my research etc. I would confirm the MSS / MSI.

If he is in fact MSS I would think that MSK would be the better option, of course that is just my opinion and what I would do if it were me in that situation.

My onc also had a somewhat negative view of the HAI pump when I asked him about it. But I have had all the standard chemo treatments fail. Keytruda is the only thing that has made real progress against my liver tumor.

My case is far from standard though, I am getting closer than I ever have been to a surgical removal of my liver tumor. Previously I was told it was inoperable due to location, where I am being treated now I have finally found a surgical team that is confident they can resect all of the tumor.

I will add your brother to my prayer list. I hope he finds the treatment that is right for him. One thing I have learned is that everyone is different and everyone's disease responds differently. What works for one may not work for another.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

RBR000
Posts: 4
Joined: Thu Apr 20, 2017 12:41 pm

Re: New and in need of help please

Postby RBR000 » Sun May 14, 2017 10:19 am

Hi Sha, Hannah and BeansMamma,

Thank you for the messages and support.

I'm writing to you from the 16th Floor of MSK. My brother is in his second day post-surgery and all is well. He is up and doing laps; though a bit worn out from the 6 hour surgery, he feels and looks good.

Dr. D'Angellica is a Rock Star and I told him as much Friday. Dr. Paty nailed the colon resection and we are so grateful to the entire MSK team for their extreme skill, professionalism and compassion.

We'll be here for a week or so, all going well.

Thanks once again to you and all in this special community. Wishing all of you the very best in your journeys, and Happy Mothers Day to the moms.

Very best,

Ricky

mariane
Posts: 574
Joined: Sun Sep 13, 2015 6:16 pm

Re: New and in need of help please

Postby mariane » Sun May 14, 2017 3:34 pm

Wishing your brother fast recovery! He is doing great :)

I had my last resection on May 17th a year ago.... It has been a year, good year. We made many great, happy memories. I am off chemo since the end of October, clear scans. Another summer is approaching. I will go to Europe to see my parents. When I left 2 year ago, I was sure , I would never see them again. Here I come :) Dr. D'Angelica was my surgeon as well. I love him :)
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, 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!

kandj
Posts: 200
Joined: Sun Sep 27, 2015 11:29 am

Re: New and in need of help please

Postby kandj » Mon May 15, 2017 9:43 am

RBR000 wrote:Dr. D'Angellica is a Rock Star and I told him as much Friday. Dr. Paty nailed the colon resection and we are so grateful to the entire MSK team for their extreme skill, professionalism and compassion.



They are all amazing, aren't they? so glad your brother is recovering well. The nurses on the 16th floor are amazing. When your brother is feeling well enough, venture down to the patient rec room (15th floor I believe). there is a little outdoor seating area and it can be so nice to feel the sun on your face out there. My husband had his liver surgery May 19th last year.
wife to DH, Diagnosed at 36yo with stage 4 CRC August 2015 mom to 3 boys
numerous mets throughout liver, unresectable currently
Folfox +avastin aug 15-Nov 15
Lynch and MAP negative
Folfiri starting Jan 2016
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 3 Liver mets and one possible lung met. Focusing on Liver mets for now. Back on FOLFOX to get them shrunk!

RBR000
Posts: 4
Joined: Thu Apr 20, 2017 12:41 pm

Re: New and in need of help please

Postby RBR000 » Tue May 16, 2017 10:35 am

Hi Mariane and kandj,

Thanks so much for the support. I think we'll go down to the 15'th floor shortly.

Wishing you both the very best.

Ricky


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