No longer NED - DEVASTATED

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

No longer NED - DEVASTATED

Postby mpbser » Mon Dec 10, 2018 3:51 pm

Good lord am I upset. I got my husband's MRI report in the mail today, one week after going out to MGH to have it done. No one called us. I just finished reading the report. He has new mets. At least one, maybe two.

HE SHOULD HAVE DONE MOP UP CHEMO!

I am PISSED at his oncologist.

I am PISSED I got the news this way. His doctor is only available two days a week and seems to be completely out to lunch. This is BULLSHIT.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Punky44
Posts: 440
Joined: Mon Oct 01, 2018 4:29 pm

Re: No longer NED - DEVASTATED

Postby Punky44 » Mon Dec 10, 2018 3:56 pm

I am so sorry. That is really rediculous that no one called to discuss first. Will you be switching oncs?
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3
Latest update: 6/20–Clear CT, normal CEA

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: No longer NED - DEVASTATED

Postby mpbser » Mon Dec 10, 2018 3:59 pm

My husband loves his liver surgeon at Mass General, so I think that if he is going to stay st Mass General for surgery, he can't leave his oncologist.

I want him to go to Dr. Kenemy at MSK, as I have heard so many wonderful things about her, but I just don't know what he is going to want to do.

I haven't told him yet because he's still at work and won't be home until late.

I only have the most important hearing of my career so far tomorrow morning.....when it rains it pours
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
ginabeewell
Posts: 420
Joined: Wed Oct 24, 2018 10:30 am

Re: No longer NED - DEVASTATED

Postby ginabeewell » Mon Dec 10, 2018 4:38 pm

I can't imagine getting that news over the mail. Devastating and adds insult to injury.

No liver surgeon is going to insist on working with a specific oncologist. And I'm pretty sure that if you choose another, you won't have issues with them working together.

I'm reminding myself this isn't a restaurant where I'm worried about hurting a server's feelings by being more demanding about the temp of my food. This is my LIFE. I really LOVE my home oncologist, but I'm not opposed to reaching out to Kemeney for another opinion or alternate treatment, knowing that she may have expertise that keeps me alive that my current oncologist does not. I really cannot afford not to, you know?

I can't imagine working with an oncologist I just didn't out and out trust, and that must be where you're sitting right now.
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

Gravelyguy
Posts: 309
Joined: Thu Jul 05, 2018 6:03 pm

Re: No longer NED - DEVASTATED

Postby Gravelyguy » Mon Dec 10, 2018 6:00 pm

Sorry you had to receive the news that way. That really stinks.

Did your husband have the option of mop up chemo?

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: No longer NED - DEVASTATED

Postby juliej » Mon Dec 10, 2018 6:33 pm

Well, that sucks big time! What a way to find out! As one of Dr. Kemeny's patients, I can confidently state she wouldn't have allowed him to skip the mop-up chemo. I'm also sorry that you have an important career meeting tomorrow morning. This is exactly the kind of thing you don't need before a nerve-wracking meeting!

Anger can be a good thing sometimes though. It can motivate you to make changes. Maybe this is the time to get that second opinion from Dr. Kemeny, just to see what she says. Of course, this is ultimately your husband's decision, but at a minimum he should change oncs at Mass General to someone who is more proactive.

I know it won't be easy to shake off your anger about this, but try to take care of yourself. Eat well today, sleep well tonight, do what calms your down. You'll be a better partner if you're as centered as you can be in this situation. Let him digest the news and think about what he wants to do next. Clearly, a change needs to happen.

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

Dionca
Posts: 44
Joined: Sat Dec 02, 2017 2:04 am

Re: No longer NED - DEVASTATED

Postby Dionca » Mon Dec 10, 2018 7:06 pm

The only way I've ever got scan reports, is in person, at my oncologist's office (only then, can I get a copy).

It's incomprehensible to me why a hospital would just mail out MRI results without having a doctor explain what is going on. Apart from it being inappropriate, how would they even know that the patient can interpret the report and understand the language. Does it actually specify mets?

Even if the dr is only there a couple of days a week, you can call his office and let them know why you are so upset and ask for an explanation - surely this can't be routine.
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung Feb 2020

DarknessEmbraced
Posts: 3466
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: No longer NED - DEVASTATED

Postby DarknessEmbraced » Mon Dec 10, 2018 7:29 pm

I'm so sorry that it wasn't better news!*hugs* Someone should have called you!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: No longer NED - DEVASTATED

Postby hiker » Mon Dec 10, 2018 8:44 pm

Please try to get him to see Dr. Kemeny. I don't care how much he likes his surgeon...this isn't about making friends...it's about saving his life.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Lee
Posts: 6051
Joined: Sun Apr 16, 2006 4:09 pm

Re: No longer NED - DEVASTATED

Postby Lee » Mon Dec 10, 2018 9:56 pm

hiker wrote:Please try to get him to see Dr. Kemeny. I don't care how much he likes his surgeon...this isn't about making friends...it's about saving his life.

hiker


Agree to ALL of the above comments. So sorry this is happening, sorry the outcome was not better. Please convince your DH to see Dr. Kemeny. If the Onc can not talk to you before this letter, that should be your clue to "move on" to a better hospital /Onc setting!!

All the best,

Lee

PS Good luck tomorrow
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 - 16 years and counting!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: No longer NED - DEVASTATED

Postby mpbser » Tue Dec 11, 2018 6:54 am

Just to be clear, the night we got back from Boston, I faxed the hospital a request for records to their records department that my husband signed. Mass General is a massive machine and they will just send out records when authorized by the patient.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

stu
Posts: 1355
Joined: Sat Aug 17, 2013 5:46 pm

Re: No longer NED - DEVASTATED

Postby stu » Tue Dec 11, 2018 8:18 am

Hi ,
That sounds a bit better at least it was at your husband’s request but is a terrible shock none the less .
It is pretty devastating realising they have gone through so much and there is more to come . Some people are fortunate enough to clear a stage 4 spread in one go , for others it is a staged process but it can still lead to a good outcome .
Thinking of you both as you start getting the right team involved.
Take care ,
Court
Last edited by stu on Tue Dec 11, 2018 12:18 pm, 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
Oct 2018. Another clear scan .

Foggyocean
Posts: 17
Joined: Wed Aug 30, 2017 12:31 pm

Re: No longer NED - DEVASTATED

Postby Foggyocean » Tue Dec 11, 2018 8:42 am

Hi mpbser,
I'm so sorry to hear about your husband's recurrence and the way in which you found out is awful. I don't post much here, but wanted to chime in as your husband's journey reflects my husband's journey. He, too, was treated at MGH for Stage IV w/liver mets. He had a liver resection and mop-up chemo (he had 4 mets to his liver) at MGH and had a new met pop up in his liver 6 months or so after he was done with chemo. I always told him that if it ever came back to the liver, I wanted to go to MSK and Dr. K. Although we were overwhelmed with the thought of starting up with everything again and I wasn't sure how the logistics would work with traveling down to NYC, I knew that we didn't want to look back on everything and ever wonder "what if".

We loved our MGH surgeon too (the oncologist was "fine", no one I felt any loyalty towards), but you know what? We love our MSK surgeon too. And we love Dr. K. And the front desk people. And the lab people. It is truly a remarkable place. And for all the battling you have done for your husband (rightfully so), at MSK you KNOW they won't let anything slip through the cracks. You can hand the reins over and trust them to do their job and you can just focus on supporting your husband. Another bonus that makes life so much easier -- you get your scans and your results in the same day! We have scans in the morning and see Dr. K in the afternoon. They really work hard for out of town people to get everything done in 1 day.

Of course this is a decision for you and your husband to make. And it will be more of a hassle to travel further away, but I can tell you that we have no regrets. And that extra travel possibly could have saved my husband's life.

-foggyocean

I should add that we still follow-up with his MGH docs...we forward the scans to them and meet with them every 2-3 months after we see Kemeny. He had SBRT for his liver met at MGH...logistically it was much easier. But I believe Kemeny insists that any surgeries be done by MSK docs.
45 year old caregiver to Husband
DX 3/16: 3cm Adenocarcinoma of sigmoid colon, Grade 2
4/16: colon resection; Stage IIIc (at diagnosis), 6/42 nodes, CEA: 11, MSS, KRAS
5/16: Baseline CT & MRI show 4 liver mets, CEA: 99
5/16-1/17: 4x FOLFOX, liver resect, 8x FOLFOX
8/17: 1 liver met, CEA 46.5
10/17: HAI pump; FUDR + Folfiri Oct-Mar '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA < 1

FightCRC
Posts: 43
Joined: Fri May 25, 2018 10:39 pm

Re: No longer NED - DEVASTATED

Postby FightCRC » Tue Dec 11, 2018 11:00 am

I will echo what so many others have said already: Please research HAI and Dr. Nancy Kemeny ASAP. Based on your sig line, your husband profiles well for the treatment and could potentially benefit greatly from it.

Dr. Kemeny is the ideal, but MSK is not the only facility that does HAI (although it's ridiculous that it isn't more widespread at this point). So for anyone reading this for whom MSK is logistically difficult, find the closest HAI program that is convenient to you. Virtually all HAI programs use Dr. K's algorithms for treatment, so there's still a connection.

(As it turns out, MSK is your closest option, which works out perfectly!)

I have a good friend who's a surgeon at Dana-Farber/Brigham and Women's in Boston. When my wife was diagnosed, I leaned on him heavily as a sounding board. Thanks to message boards like this one, it soon became apparent that I needed to look into HAI. I asked my friend about it. He told me he'd poll his colleagues and get back to me. When he did, he told me that they don't offer it, and don't believe in it. HAI, in their opinion, didn't work.

However, the evidence was just too strong to me. So I kept forwarding him the data. He kept an open mind and reviewed it all. Now, he says that if it was his wife or daughter in our situation...he'd send them to MSK to see Dr. Kemeny to get the pump. For whatever that's worth.

I owe a huge debt of gratitude to posters like juliej who have continued to help spread the word, long after they've successfully completed treatment. If it wasn't for them, we'd have never heard of HAI. It's not offered anywhere near us (San Francisco Bay Area). Again, please do your research, even if it's just limited to this board. All the best to you and your husband.

WarriorSpouse
Posts: 218
Joined: Tue Aug 16, 2016 9:02 pm

Re: No longer NED - DEVASTATED

Postby WarriorSpouse » Tue Dec 11, 2018 11:16 am

I am sorry to read this. I would be very disappointed with MGH too.
Since you are close to Boston, why not go to Dana Farber for an aggressive treatment plan for the cancer reoccurrence and go to your MGH surgeon if there is surgery involved. My wife gets her treatment plan from Dana Farber and goes to an MGH / Partners affiliate for her treatments. It can be done.
Best wishes on the next move for you guys.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot


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