Family friend Stage IV recurrence

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mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Family friend Stage IV recurrence

Postby mpbser » Sat Jul 28, 2018 12:45 pm

A friend of my family was diagnosed with Stage IV CC with mets to the liver about 6 or so years ago. I believe she started with only one liver met and went through the usual treatments most patients do. She thought that at year 5, with NED, she was "cured." Shortly after that milestone, about a year and half ago, around the same time my husband was diagnosed, two new mets were found, one on lung and other on liver. It was a real blow. I don't know all the details but over the past year, the liver mets either multiplied or grew at an accelerated rate. It wasn't good. One lung met also appeared.

She had nearly half her liver ablated and/or chemo directly administered to her liver (I get this info third hand so I'm not sure exactly what was done) about 4 months ago. My aunt took care of her while in the hospital (aunt is a nurse with many years experience) and at her home. Family friend recovered amazingly. I saw her a month ago and I was really happy to see how well she looked given all that she has gone through of late.

I got a call from my aunt yesterday with the bad news that a scan she had shows that there is a new tumor on the liver and the one in her lung has increased in size. She has an appointment with her oncologist on August 8th. I have been thinking about suggesting that they go try MSK but I don't know how well-received the suggestion will be. I can't recall where her treatment is currently but I think it's either Johns Hopkins or Univ of Penn Med Center. My aunt seems to think the oncologist our friend has is wonderful, so I just don't know.

I didn't mention any of the new developments to my husband last night because I didn't want to ruin his night out with his friends. I told him about it this morning, and said that if he happens to have any recurrence (just being realistic but praying that won't ever be the case), we should consider Dr. Kenemy at MSK. He was very receptive to the idea which I have been putting off talking to him about for quite some time. *phew*

Praying for family friend.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

stu
Posts: 848
Joined: Sat Aug 17, 2013 5:46 pm

Re: Family friend Stage IV recurrence

Postby stu » Sun Jul 29, 2018 4:10 am

Hi ,
It is such a blow when all seems so well to be hit with a recurrence. The last one my mum had explained that despite it being seven years after diagnosis it was still part of the original spread . They got long periods of being treatment free which is a bonus .
They sound as though it’s still treatable , maybe even operable . So I would gently introduce what your plans would be in those circumstances and if it’s well received great and at least you tried .
I can’t tell you how many times over here I have pleaded with people to seek a surgical opinion but they are so wrapped up in their relationship with the oncologist who favours chemo alone that they miss their window of opportunity . People are starting to listen and ask questions but it’s a difficult position to be in . They seem to think disease progression will be easier on them physically than surgery!!! Not always the case but a hard thought process to alter so I feel your dilemma and wrestle with “ the right thing to do” . However if you care why not . Just be prepared for the idea to be rejected and support them in their choice.
The upside though it sounds as though you have a positive conversation with your husband and have a considered plan of attack if ever required . Thankfully loads of people never have to put that into action .
Take care,
Stu
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

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: Family friend Stage IV recurrence

Postby mpbser » Sun Jul 29, 2018 7:20 am

Thanks for your input, Stu. Yeah, I didn't understand why our family friend wasn't having surgical interventions for the liver and lung tumors. I didn't ask because my aunt is a one-way communication kind of person, not very open to dialogue.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: Family friend Stage IV recurrence

Postby mpbser » Wed Aug 08, 2018 2:57 pm

Our family friend got details today at her appointment with her oncologist. The new tumor in her liver has a 2 inch diameter according to my aunt. She will have the same chemoburn procedure that they did this past spring, removing about 20% of her liver. That seems like a very aggressively growing tumor. Awful situation.

I am not telling my husband about this. I did mention the recent bad news (that started this thread) and it unsettled him.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

crazylife
Posts: 254
Joined: Wed Dec 30, 2015 11:29 am

Re: Family friend Stage IV recurrence

Postby crazylife » Thu Aug 09, 2018 8:09 am

This seems like a manageable recurrence that can be removed with some surgery and mop-up chemo. Prayers to them this is all it is.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

User avatar
Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Family friend Stage IV recurrence

Postby Jack&KatiesMommy » Thu Aug 09, 2018 10:23 am

As an alternative, Please see if your friend has had Foundation One testing on her tumor. If she has and it is MSI high OR even if it is not MSI high and it has a moderate to high mutation burden it is very likely that immunotherapy (Keytruda) would work for her. (Take a look at my thread titled "Trying Keytruda Off-Label" for a backward look at how immunotherapy has gotten me to NED after 7 years of many different treatments.

Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: Family friend Stage IV recurrence

Postby mpbser » Thu Aug 09, 2018 12:59 pm

re "This seems like a manageable recurrence that can be removed with some surgery and mop-up chemo"

Right, but she isn't having surgery.

Thanks, Jack&KatiesMommy, I don't know much of the details but I assume she has had the tumor tested. I might just ask my aunt to inquire instead of assuming.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: Family friend Stage IV recurrence

Postby NHMike » Thu Aug 09, 2018 1:04 pm

mpbser wrote:re "This seems like a manageable recurrence that can be removed with some surgery and mop-up chemo"

Right, but she isn't having surgery.

Thanks, Jack&KatiesMommy, I don't know much of the details but I assume she has had the tumor tested. I might just ask my aunt to inquire instead of assuming.


Genomic testing isn't standard of care though it's done at some places. I don't think that it's covered by insurance unless the doctor requires it. I asked my oncologist and he blew me off so MGH did it for me.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Lee
Posts: 5678
Joined: Sun Apr 16, 2006 4:09 pm

Re: Family friend Stage IV recurrence

Postby Lee » Thu Aug 09, 2018 1:39 pm

mpbser wrote:Thanks, Jack&KatiesMommy, I don't know much of the details but I assume she has had the tumor tested. I might just ask my aunt to inquire instead of assuming.


You really might want to read her thread (see below), it really is a game changer. And see how she did it.

viewtopic.php?f=1&t=60593

Good luck,

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!

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: Family friend Stage IV recurrence

Postby mpbser » Thu Aug 09, 2018 1:50 pm

I saw that thread about tumor burden. That's very exciting and great news.

I don't have details about our family friend but I hope that there are future developments for people with MSS and moderate tumor burden. For example, my husband's tumor had three mutations which would make him ineligible for the trial.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Family friend Stage IV recurrence

Postby Jack&KatiesMommy » Thu Aug 09, 2018 3:01 pm

mpbser wrote:I saw that thread about tumor burden. That's very exciting and great news.

I don't have details about our family friend but I hope that there are future developments for people with MSS and moderate tumor burden. For example, my husband's tumor had three mutations which would make him ineligible for the trial.


First, I wasn't in a trial at all. My oncologist got Keytruda approved off-label in order to see if it would work for me (due to having 11 mutations.) I don't know if the 3 mutations would be enough or not. But I wouldn't assume that it wouldn't work for your husband. My oncologist believes that cancer patients' cancer mutates the longer we live with it and the more treatments it is subjected to. So, for me, it may have taken all of these treatments, and time living with this cancer, to get it to a point that the immunotherapy would work. So, perhaps, if your husband needs it in the future, you can keep the idea in your head...have the tumor retested to see what mutations he as at that time. In the alternative, the three may be enough to open his cancer up to the immunologic drugs....
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: Family friend Stage IV recurrence

Postby mpbser » Thu Aug 09, 2018 4:27 pm

I asked my aunt earlier today whether our family friend has had genomic testing. She just got back me. Apparently, no. I honestly don't know how, if at all, to say anything about this to her. As described above, my aunt doesn't really take advice very well, so maybe I should just keep my mouth shut.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: Family friend Stage IV recurrence

Postby juliej » Thu Aug 09, 2018 7:06 pm

I can imagine how frustrating this must be for you! It's hard when someone doesn't take advice very well and yet you know of things that will improve your family member's outcome. But you can only do so much. Your heart is in the right place. If they don't listen, it's not your fault.

Dr Kemeny's stats with HAI pump and systemic chemo are 80% survival after 5 years. That's pretty amazing considering I was given a 5% survival rate at diagnosis. Glad your husband is receptive to the idea if he needs it (but hopefully he won't!).
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: Family friend Stage IV recurrence

Postby mpbser » Fri Aug 10, 2018 7:27 am

Thanks for the input.

I don't know if this "chemo directly onto liver to burn it away" (the third hand information I got from my aunt) procedure that our family friend had done and will have again at the end of the month is an HAI pump.

I totally want my husband to go see Dr. Kenemy if he has a recurrence. But, yeah, hope/pray he does not need to see her!

On a positive note, I had a CT barium swallow test the other day and no abnormalities were detected. Looks like I have silent GERD. I am taking cimetidine for it. Hopefully the cimetidine will also resolve the plantar wart on my foot as it is prescribed for that as well. Killing two birds with one stone!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: Family friend Stage IV recurrence

Postby mpbser » Wed Aug 29, 2018 4:36 pm

Family friend went in yesterday for another "chemo directly to liver" followed by RFA. Another tumor developed in the remaining part of the liver after she had the last procedure. I tried to make sense of why she was having this type of procedure done when I spoke with my aunt this past weekend. The story for why they are using this treatment method was that the tumor was right up against the hepatic vein. (Interestingly, so was my husband's but 4 rounds of chemo shrunk it to the point where his liver surgeon could excise it with clear margins -- coming only 1 mm away from the vein safely because the guy has mad skills). That was the story for the last time she had this type of treatment. However, I am not sure why they are using the same method this time. I don't know. It just doesn't seem to make a whole lot of sense to me unless the real issue is just not having an amazing, world class liver surgeon where she is being treated.

The good news is that she handled the treatment well and is recovering speedily.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED


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