So the news was not good....

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Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

So the news was not good....

Postby Monimom » Sat Oct 17, 2020 8:48 am

We went to my husbands appt..to get the results of the CT scan as well as for his 3 week avastin treatment..
Right out of the gate we knew something was amiss, as his dr wanted to speak with us before any bloodwork was done...
She informed us that the scan that was done has shown the cancer is growing, the tumors on both lobes of liver increased 1 cm each, and the area on his lung that months ago she brushed off as likely nothing / focal scarring has now become something as it has increased a bit in size. She told him the next line of treatment she has is for him to go back to infusion of 5fu/ Irinotecan and Panitumumab... she told him to stop taking the Xeloda ,sure wish we she wouldv'e contacted us AS soon as she got the results he couldve canceled his prescription as its doing nothing. I asked her if the dose was different trying to rationalize why its doing nothing suddenly, she said its a maintenance dose, ... ideally she wants hm back on Oxaliplatin, but he has terrible neuropathy so thats not an option, crazy ALL the avastin etc . really did very little.. his tumors are only 1 cm smaller now than when he began 1 yr ago

We left without any bloodwork or treatment , he told her he wants to think about plans moving forward, we discussed with his Onc. about contacting Dr. Kemeny, she agreed to help with whatever our choices are , this practice has an alliance with MSK, I would assume this will help if Dr. Kemeny is open to seeing him. again finacially/insurance wise .... I am stumped as to how we can make this can happen , I believe he is no longer going to try to find work and he's were going to try to get SSDI benefits but we know there is a 2 yr medicare wait...

this is overwhelming and a shock , but honestly it's not ... its surreal , I read posts and signatures on this forum and completely comprehend the monster that were fighting..
I am praying for peace with all decisions that he/we make , as all of you know NONE of this is easy

I have sooo many problems with the way she has handled this with brushing of the lung area and not checking his CEA for 3 moths..etc..., but realize that focusing on that is not going to help this situation whatsoever... so Mon we will be contacting Dr. Kemeny , but in the mean time he's not on any chemo, this is scary considering how it grew in 4 months while ON chemo... once again thank you for any replies they ALL help
Blessings,
Moni ;)
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

boxhill
Posts: 643
Joined: Fri Apr 06, 2018 11:40 am

Re: So the news was not good....

Postby boxhill » Sat Oct 17, 2020 9:22 am

I'm sorry to hear about the bad news. I hope things go well with Dr. Kemeny.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

martd
Posts: 127
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: So the news was not good....

Postby martd » Sat Oct 17, 2020 10:30 am

SSDI has a compassionate process for stage 4 cancer patients. It only takes a few months. I would suggest starting immediately, it's also surprisingly easy they were very helpful. After qualifying for SSDI he will then become eligible for medicare.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

Claudine
Posts: 440
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: So the news was not good....

Postby Claudine » Sat Oct 17, 2020 10:55 am

Dang, I am really sorry to read this.
But denial has never healed anyone, and when it comes to cancer, knowledge is power. It seems from your post that despite the bad news, your husband isn’t throwing the towel but may be considering other options? Maybe options that are more aggressive than just chemo? From everything I’ve read on this forum, Dr Kemeny seems to be an expert in the field of liver mets so contacting her is a fantastic idea! It’s also great that your husband’s onc is supportive of you getting a second opinion/support from a larger center.
Also, lung mets have been successfully treated with cryoablation or radiation, especially if it’s just an isolated one.
I hope you can start on the path of a new treatment plan soon XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

DarknessEmbraced
Posts: 3527
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: So the news was not good....

Postby DarknessEmbraced » Sat Oct 17, 2020 12:34 pm

I'm sorry it wasn't better news.*hugs* I hope all goes well for you with Dr. Kemeny. :)
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! :)

FightCRC
Posts: 54
Joined: Fri May 25, 2018 10:39 pm

Re: So the news was not good....

Postby FightCRC » Sat Oct 17, 2020 12:43 pm

If you're husband was on maintenance chemo, then this is what occurs: The patient is on it until there's growth/progression. It's totally expected.

The idea is to stretch things out as long as possible. It's known as the "chemo-for-life" plan. But it also means that once the chemo stops working, you are out of options. And it will eventually stop working. "Chemo-for-life" is treatment with no curative intent.

It's the default approach for vast majority of oncologists/hospitals. It is also, IMO, limited, conservative, and lazy. It's one major reason why 5-year survival stats for mCRC are so dismal. Again, IMO.

To this point, surgical resection remains the gold standard for cure. There are no guarantees. But it's your best shot/hope. Without it, the outcome is all but guaranteed

If your oncologist doesn't chart a path to possible resection from the outset, then they have you on the "chemo-for-life" plan, even if that's not what they're saying out loud. Most oncologists won't consider surgery. But that's not their call. That's a surgeon's call. Has your oncologist had you consult with a surgeon yet? My guess is no.

For all newly diagnosed patients out there, fight to see a surgeon as early as you can. Don't be passive; don't wait until things get desperate to get proactive. If you're diagnosed at Stage IV, things are desperate enough already.

I hope you do see Dr. Kemeny. The whole point of HAI is to get unresectable patients to resection. It doesn't always work, but at least she'll try. Extra-hepatic disease can be an exclusion, but we've seen her accept patients with limited lung mets. That was our experience with her, as well. I wish you and your husband the best of luck.

cartech78
Posts: 76
Joined: Thu Oct 25, 2018 6:22 pm

Re: So the news was not good....

Postby cartech78 » Sun Oct 18, 2020 1:25 am

I agree with what FightCRC said above. Dr. Kemeny is my doctor as well. When you want to be aggressive she’s the right doctor for that if/when possible. Hopefully you get out to see her soon and she formulates a plan to get you back to shrinking tumors as opposed to only keeping the stable. Good Luck!!!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Re: So the news was not good....

Postby Monimom » Wed Oct 21, 2020 9:46 pm

Hi again, I have set up the account with MSK and forwarded records, we are awaiting their contact to set up an appt. hopefully.... I am getting nervous though about the fact that as of now my husband is not doing any type of chemo at the moment, the day we went for the CT scan results he had just started his Xeloda cycle and thought he was getting Avastin, but his Onc. said no, and to stop the Xeloda, she had gotten pre approval for the next line of therapy but we said we wanted to talk about it firsrt and potentially seek other options ... so this is where we are, she is on standby if he wants to start the other chemo... and were afraid of the time he's off it growing even more... any one face gaps in treatment like this ??? the fact that it was already progressing while on chemo, makes this even more frightening.. and please tell me you opinions, at the mentioned appt. his Onc didn't physically examine my husband, nor did they do any bloodwork.. I presume because she knew she wasn't giving him the Avastin infusion , but you'd think she would still care to check on him no???
I appreciate any input,
thankyou
Moni : )
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged


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