Hi again , hoping for opinions

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Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

Hi again , hoping for opinions

Postby Monimom » Sat May 23, 2020 10:35 am

Hi there,
Its been a bit since I posted, and I have a few opinions i'd love to get .. since this Covid has taken over I like many have been disallowed from attending my husbands appointments, sadly I am the proactive one in his health, so I ask all the questions...I have decided I will be contacting his Dr. outside of his appointment to talk, but I wanted to "gather" some opinions, Also I attempted to add his particulars to my sig, I don't know if I did it right, hopefully its understandable. I forgot to add he has been listed as "inoperable" so his Dr. has his plan as "palliative" we're praying for that to change
Ok please bear with me and allow me to ask,

He has now had 11 treatments , he has had residual neuropathy so his Dr is stopping the Oxi.
1) Is it normal to just "stop" and not taper?

His CT scans do show decreasing liver mets but the rate is quite slow and the colon is unchanged
2) Is it normal to continue the same treatment regimen , when the regression is this slow?

3) Does Chemo cause the spleen and prostate to enlarge ?? his Dr. never mentioned it to him when she reviewed the scan, she did tell him there is calcification, which we both don't understand..

His CT scan notes mentions this.. his Dr. did NOT say anything about it... Is that "normal?"
Lungs and Pleura: A 0.3 x 0.7 cm streaky opacity in the left upper lobe abutting the mediastinum may represent atelectasis or scarring and less likely a pulmonary nodule. It is stable compared to 10/20/2019. There is no new pulmonary nodule or mass.
Spleen: Enlarged measuring 15.7 cm in AP dimension compared to 15.1 cm previously.
Pelvis: The prostate is enlarged.

and lastly, I reviewed her notes from his appointment when she discussed his CT scan with him ... I found a few errors, it appears as if shes copy pasting from prior nots, should I point this out ??
I would like to have his plan of care so far and future care reviewed by another Dr. has anyone done this after this many treatments ?? Thanks so much for your time !!
and lastly please let me say my husband has been out of work since Dec. ( he's always laid off seasonally) we will lose our insurance coverage in Aug, unless he gets called back or I find full time work with benefits, how do you all handle this ??
again thank you so much
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

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Hi again , hoping for opinions

Postby zephyr » Wed May 27, 2020 4:59 pm

Monimom wrote: .. since this Covid has taken over I like many have been disallowed from attending my husbands appointments, sadly I am the proactive one in his health, so I ask all the questions...I have decided I will be contacting his Dr. outside of his appointment to talk, but I wanted to "gather" some opinions


3) Does Chemo cause the spleen and prostate to enlarge ??


I'm certainly not qualified to answer most of your questions/concerns but I would like to comment on the above, based on my own experiences. Your mileage may vary.

First, my oncologists have started doing telephone or video appointments so you should ask about those options. COVID is not an acceptable reason to refuse to allow a patient advocate to attend the appointment; other arrangements can be made. In my experience as a patient, you need two sets of ears for these appointments because it's just too easy to miss things while processing what's just been said. Even in treatment areas where visitors are not allowed, special arrangements have been made for us when we needed to combine a treatment with a medical appointment. Earlier this week, we were given a private room so that I could receive treatment and my husband could be there while we were on a conference call with the oncologist. Explain your position, ask nicely for a creative but safe solution, and use "please" and "thank you" liberally - but be firm about what you need. It's worked for me.

Second, yes chemo can cause an enlarged spleen (but I can't answer the prostate part). My spleen was chronically enlarged for years on Folfox, Folfiri, and 5FU. My platelets were also low and I was told that the spleen was capturing the platelets. That may have been why it was enlarged ...? The spleen returned to normal after I stopped with those treatments and is now reported on my CT reports as "unremarkable".

I hope this helps.

Edited to add: I think you should tell your oncologist about your insurance concerns because it might change her choice of treatment recommendations.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Hi again , hoping for opinions

Postby boxhill » Wed May 27, 2020 6:24 pm

Here are my answers to your questions. Like Zephyr, I'm not a doctor. :)

Q1: Yes. Although plenty of people, including me, coincidentally have had reduced dosage before quitting it completely, it is usually because of something like trying to bring up the platelets. When people quit because of neuropathy, they just quit.
Q2: From the stories I've read here and elsewhere from a lot of patients, oncologists tend to keep on going with something if the cancer is responding and the side effects aren't too bad, in some cases even if there is a (possibly) "better" alternative out there. Because they never know in advance if the patient's disease is going to respond to *any* chemo or immunotherapy, a bird in the hand may be worth two in the bush.
Q3 Spleen, definitely. I had an enlarged spleen during folfox, which returned to normal afterward. (I seem to recall advice to wear my seatbelt and avoid activities that were risky for hard falls.) As to the prostate, I have no idea.

Re the CT scan, lots of people have scars of one kind or another in their lungs from old infections or who knows what. If they find something and they don't think it is cancer, the normal thing to do is just keep an eye on it to see if there is change. No cause for undue alarm. I have a little lung node that they decided was some kind of calcified thing. They don't even bother to do thoracic scans on me anymore. Lots of men your H's age have an enlarged prostate. Has your H had a PSA test? Something to talk to the oncologist and/or your H's PCP about.

What is the situation with the small liver lesions now? Coud your H possibly be a candidate for the HAI pump?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

Re: Hi again , hoping for opinions

Postby Monimom » Fri May 29, 2020 5:57 am

Thank you both for your replies, they are VERY appreciated !!!

I am going to try to attend his next appt. if I cannot then I will request a phone appointment for myself.

The lung streaking that was notated was never mentioned in any of his prior scans, thats the only reason I am somewhat concerned,
also the fact that his Dr. never disclosed his spleen or prostate to my husband, as a matter of fact her after visit notes online, she said they were "normal"... yet the radiologist notes scan result says "enlarged"... Did she not read the whole report ?? By nature I have an eye for detail, and don't generally "miss much" but I am not clear on if this type of omission is normal.

The only mention of his smaller lesions is that they are "stable"..
His Dr. said surgery is not an option at this point because of the liver …

Is it typical for the colon to have such a small area( 3 cm ) and the liver to have such large tumors ? as well as WHY has the colon remained "unchanged" as if the 11 treatments have done nothing for the colon?
These are ALL questions I have for his DR. … but if you want to add please feel free !!
Thank you in advance sooo much
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

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Hi again , hoping for opinions

Postby jep » Fri May 29, 2020 7:01 am

Hi Monimom,
I can relate to your frustration, as I am in a similar situation with not being able to attend my husband's visits . . . have you tried having your husband call you during the visit and put you on speakerphone? We did that, and my husband rolls his eyes about it (of course), but his oncologist was totally open to it and answered all of my questions via speakerphone . . .

Also, I totally agree with the other posters, but just to add to the responses for Q#2:
Yes, I think if the meds are working (even slowly) then it makes sense to keep going with that plan . . . my husband's last treatment was simply "keeping things at bay" and we would have kept going with that, but the side effects were really intense and his oncologist was worried about him . .

Sending positive thoughts to you and your family . . . hang in there and keep being the great advocate and caregiver that you are :)
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

Re: Hi again , hoping for opinions

Postby Monimom » Fri May 29, 2020 10:31 am

Thank you for your reply.. yes our situations are indeed similar... I just called his Onc.'s office to inquire if I am allowed to attend his next visit.. and that if not, could she take a phone call... I do have questions for her... if I can attend I will bring my notebook... lol

I dont know how I feel about the keep going with treatments plan... the benefit vs toxicity is a very important keypoint… my husband is doing real well... he is feeling good, (although his labs show otherwise) he's active and has a good appetite, I fear continuing to pump more chemicals will change this... I had read that there is a point where maximum tumor regression occurs.... so beyond that point to continue "as we have been" could be more harm than benefit

My husband has not had any surgery... and as of now he's (according to this Dr.) not a candidate...

definitely a hard situation....
How is your Husband ?? is he able to work ???
mine was supposed to return, he's waiting for his call back (he's seasonal construction)
he plans to switch to oral xelox so that he wont be hindered by the pump., but as we've learned theres nothing set in stone everything changes ..
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: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Hi again , hoping for opinions

Postby boxhill » Fri May 29, 2020 2:20 pm

I really think you need to read up on the HAI pump and Dr. Kemeny at MSK. There are plenty of posts about it here.

I am not particularly well informed about what constitutes eligibility, but I do recall that having a met outside of the liver is a problem, but I seem to recall that they sometimes do a resection and install the pump.

You should be prepared to encounter some resistance from your local oncologist, because not many places in the US do it, but there are a few (City of Hope in CA springs to mind). Kemeny has outstanding results. I think many people end up contacting MSK directly themselves.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Hi again , hoping for opinions

Postby CRguy » Sat May 30, 2020 1:23 am

I would suggest you read some posts from, and/or contact juliej
or ginabeewell
for some feedback on MSK / HAI and Dr K

They have both BTDT !

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Hi again , hoping for opinions

Postby martd » Sat May 30, 2020 10:52 am

In regards to your insurance question social security disability might be an option for you. They have an accelerated approval process for stage 4 cancer patients. After receiving disability he would then qualify for Medicare. As for the second opinion I would say definitely go for it. At least start with phone calls to all the major cancer centers, even if you feel it's out of reach or they are to far away. MSKCC , MD Anderson, Mayo Clinic are a few of the leading centers and there are many more.
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

Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

Re: Hi again , hoping for opinions

Postby Monimom » Wed Jun 03, 2020 9:41 am

Hello... I wanted to update as I WAS allowed to my hubs appointment and had the ability to ask a lot of questions …
I am disappointed that she is anti supplements of any kind, ie: milk thistle, turmeric etc... she says nothing more than a multivitamin. Do any of you take supplements ??

I asked her about the newly enlarged spleen & prostate, she said shes not concerned & said prostate is likely age related , & spleen shes not sure, maybe back pressure from liver.. I asked if Chemo could be playing a role in it and she said no.

I asked if the maximum tumor regression could have happened already since hub has had 12 cycles and the shrinkage has been slow & minimal... she said it could shrink more... I asked about the benefit vs harm from these treatments... her reply , "what are our other options??" she then said if we stop chemo the cancer is going to grow , I again brought up my concern about the Avastin "rebound effect" that I have read about... she denies it happens.

I asked about the latest CT scan showing a streaky opacity in the lung, that had never been mentioned in prior scans , she pulled up the scan and couldn't find what the Rad was talking about, and said some notate every single thing they see, and its likely nothing.

Hubs scan mentions calcifications , so I asked if that was good she said that is dead cancer, I asked if its possible the tumor sizes are also showing their size but could be dead cells and she said yes.. only way to know if it is active cancer is a PET scan , and she could try to order one, but regardless of findings her treatment will continue as is

I then asked what is the plan since he's had 12 cycles of Folfox and Avastin… (Oxi was dropped re: neuropathy) .. her plan is to continue a is... 5fU and Avastin until it no longer shrinks or hubs body cant handle... then she's start a diff regimen.

I asked about HAI pump... she said he's not a candidate , he has too many tumors on liver, I know she's NOT the one to decide this,I just wanted to see her reply, she said she can refer us to a hepatic surgeon to allow them to substantiate what shes saying. Soooo...am I wrong in my feelings of disdain ? whats you thoughts?? also his labs again are low... but he's still stable enough for treatments without interventions, I did notice his bilirubin is now high
What are your thoughts ? I am not feeling hopeful with this .. she is very chemo 4 life and thats it... it feels disheartening..
BTW... I want to add one important thing, physically , aside from the weight / muscle loss... my hub is doing fantastic, he is able to do a lot of yardwork , etc... I fear the overburden of chemo on his body will destroy this... hence my concern over effectiveness vs risk,, feel free to chime in I appreciate all of your knowledge & experience,
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

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Hi again , hoping for opinions

Postby Jack&KatiesMommy » Wed Jun 03, 2020 11:08 am

Moni:
I would get a second opinion on the HAI pump if possible. I was told that I had no other options and that it would be chemo for the remaining 12-22 months that I had left. I did well on chemo and got a second opinion from an aggressive liver surgeon at MD Anderson. He said I was ready for a liver resection. He wnet in and found dozens and dozens of tiny cancer tumors throughout my liver that could not be seen via CT scan. He closed me up and said there was nothing more that he could do. While still recovering from the unsucessful resection, I sent my records to Dr. Kemeny at Memorial Sloan Kettering and about two weeks later her office called and said that she would take me as a patient. I went to see her and she said that she thought she could hep me. That was 8 years ago. She saved my life with the HAI pump. I am so thankful that I got that third opinion.

Cynthia
Last edited by Jack&KatiesMommy on Tue Jun 09, 2020 7:44 pm, edited 1 time in total.
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(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
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Hi again , hoping for opinions

Postby boxhill » Sat Jun 06, 2020 1:37 pm

Monimom, Cynthia's post reminds me: has your husband's primary been biopsied? Do you have any genetic information about the cancer?

I'm glad you were able to be there, BTW, although I am not wildly impressed by the responses you got. It would be SO frustrating to be excluded. Your H is lucky to have you as his advocate. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Monimom
Posts: 49
Joined: Wed Jan 08, 2020 6:15 pm

Re: Hi again , hoping for opinions

Postby Monimom » Sat Jun 06, 2020 3:39 pm

Hi Boxhill,

Thank you for your reply, My husband was diagnosed in the urgent care , we went for back pain he had been experiencing, after many tests they said he had a colonic mass and lesions on his liver, some large... a liver biopsy was done that confirmed colon cancer … here is a copy paste of the findings.... I guess of all of tis , these findings were the positive in a very negative situation... I am still trying to learn … maybe it makes more sense to you.. btw he's never had a colonoscopy.

Diagnosis: Metastatic colonic adenocarcinoma
Specimen: Left liver lobe, core biopsy, estimated tumor cellularity (70%)

POSITIVE:
Tier II (variants of potential clinical significance):
TP53: NM_001126112.2, c.743G>A, p.R284Q, VAF=70.1%


VARIANTS OF UNKNOWN SIGNIFICANCE (Tier III):
STK11: NM_000455.4, c.997C>T, p.R333C, VAF=5.5%


NEGATIVE (No pathogenic mutations were detected in the following genes):
EGFR: No mutations detected
KRAS: No mutations detected
NRAS: No mutations detected
BRAF: No mutations detected
GNA11: No mutations detected
GNAQ: No mutations detected
PIK3CA: No mutations detected
KIT: No mutations detected
IDH1: No mutations detected
IDH2: No mutations detected
SMAD4: No mutations detected
CDKN2A: No mutations detected

Please see below for a complete gene list.

Comment:
TP53: The c.743G>A, p.R248Q, missense, inactivating mutation was
detected in
exon 6 of the DNA binding domain of the TP53 gene at 70.1% variant allelic
frequency. The high allelic frequency is likely resulting from loss of
heterozygosity (LOH) or deletion of the wild-type allele.
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

Wewillfight
Posts: 26
Joined: Sun Mar 03, 2019 5:27 am

Re: Hi again , hoping for opinions

Postby Wewillfight » Sat Jun 06, 2020 4:20 pm

Order foundation 1 testing as soon as possible to confirm he is MSS or lucky enough to be MSI-H

Chemo at moment looks best plan to stabilise situation, if he is MSI H that potentially a game changer so important to know.

Good luck to you both, the chemo looks to be helping which is good, try to have regimens ready to slot in at any sign the efficacy is tapering off and look into immuno trials etc
Feb 2017 (35yr) stage IIIc, surgery, colostomy, 2 nodes ( crohns colitis since 17yr
6 months FOLFOX
MSS - low mutation burden, TMB=1
NED
Rejoin June 2018
December 2018 symptoms
March 2019: recurrence , surgery , some spread to pertineum
Jan-June 2019 Folfiri+Cetux
No spread.
August 2019: partial blockage symptoms
Nov 2019: Aborted small bowel resection, venting gastronomy fitted , home TPN
Dec 2019- Jan 2020: Keytruda
Feb 2020: reaction
Feb 2020: treatment ceased, TPN withdrawn
March 18 2020: RIP Brother.

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Hi again , hoping for opinions

Postby boxhill » Sun Jun 07, 2020 11:24 am

Well, one good thing about his results would appear to be that he is eligible for treatment with monoclonal antibodies such as Vectibix and Erbitux, which are used for CRC.

I don't see any mention of MSS/MSI or of the 4 genes involved in dMMR, so I would ask about testing for that. Foundation One testing is not required to make that determination.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED


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