My CRC with liver mets journey

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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Mar 31, 2020 7:10 pm

PET scan confirmed new activity. Chemo will restart, probably Monday assuming Dr Stein can get in touch with Dr Kemeny by then. Dr Stein says 4 rounds, then scans to assess next steps. No talk of surgery even when I asked; don’t know if that’s driven by Covid or something else. Ugh.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: My CRC with liver mets journey

Postby Rock_Robster » Wed Apr 01, 2020 2:54 am

ginabeewell wrote:PET scan confirmed new activity. Chemo will restart, probably Monday assuming Dr Stein can get in touch with Dr Kemeny by then. Dr Stein says 4 rounds, then scans to assess next steps. No talk of surgery even when I asked; don’t know if that’s driven by Covid or something else. Ugh.

Sorry Ginabeewell, that’s a serious bummer. I hope they have a solid plan for you soon. Like you I’ve had two liver resections; my surgeon said if I had a recurrence he’d probably be preferencing SABR radiation, or ablation. Give the lesions sound small, hopefully one of these is an option.

Good luck,
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Wed Apr 01, 2020 9:16 am

Gina you've been an inspiration this far I can only imagine it continuing. Thoughts and prayers... no sorrys here just straight to the positive!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

rachelfromnyc
Posts: 47
Joined: Fri Oct 04, 2019 11:32 am

Re: My CRC with liver mets journey

Postby rachelfromnyc » Wed Apr 01, 2020 12:17 pm

That’s the same test that was positive for me: the anti-CCP test. The RA screen was negative. So you may have experienced the same thing: your body mounting an immune system response to early stage colon cancer. Oh also I read that MRI would be negative for RA in a case like this. Crazy right?! But I’m choosing to think of it as a sign of my body’s natural power. I could never shake the feeling that the pain was related to my cancer; but I guess I assumed it was the treatment vs the cancer back itself. So fascinating.


I also had an autoimmune condition going into my cancer diagnosis. As I was trying to understand how this cancer could have possibly happened since I don't have the typical risk factors (I'm under 50 years old, active/not overweight or anything and in general, have good habits as it relates to nutrition, etc.), I began to suspect the autoimmune disorder and cancer were related. However when I asked my oncologist and rheumatologist, they both said there's no link. As an aside, when I asked the oncologist how long the cancer had been growing, she said 10 years which lines up exactly with my autoimmune diagnosis. Go figure. Anyway, I didn't pursue it anymore but I often wonder how many cancer patients go in with a pre existing autoimmune condition since treating autoimmune diseases consists of immunosuppresants/other immune modulating drugs.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Apr 01, 2020 2:03 pm

rachelfromnyc wrote:I also had an autoimmune condition going into my cancer diagnosis. As I was trying to understand how this cancer could have possibly happened since I don't have the typical risk factors (I'm under 50 years old, active/not overweight or anything and in general, have good habits as it relates to nutrition, etc.), I began to suspect the autoimmune disorder and cancer were related. However when I asked my oncologist and rheumatologist, they both said there's no link. As an aside, when I asked the oncologist how long the cancer had been growing, she said 10 years which lines up exactly with my autoimmune diagnosis. Go figure. Anyway, I didn't pursue it anymore but I often wonder how many cancer patients go in with a pre existing autoimmune condition since treating autoimmune diseases consists of immunosuppresants/other immune modulating drugs.



That is so interesting. My oncologist last night told me she didn't think they were related - that typically people have "significantly more disease" before paraneoplastic syndrome sets in. But the things I've read online would suggest that symptoms could start months or even years before cancer is actually seen in the body, which makes sense to me - particularly if the immune system charged up and effectively kept things at bay for a while.

If it IS paraneoplastic syndrome, the RA would go away or resolve with effective cancer treatment. Is that what you experienced or are you still feeling symptoms?
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Apr 05, 2020 11:58 am

I was all set to start chemo at NW, but Dr Kemeny put a pause on it; she wants to see the scans herself to be sure it’s new activity. I guess this is her process, and it’s worked for her thus far. One more week of normalcy...
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Wed Apr 08, 2020 5:41 pm

ginabeewell wrote:I was all set to start chemo at NW, but Dr Kemeny put a pause on it; she wants to see the scans herself to be sure it’s new activity. I guess this is her process, and it’s worked for her thus far. One more week of normalcy...

I'm glad that Dr. K herself is taking a look at the scans, especially considering those 2 new mets are near cuts. She has so much expertise when it comes to interpreting scan "findings."

Then, if it is indeed something to worry about, her team will consider all the options, taking into account Covid issues, surgery delays, and the dangers in receiving chemo infusions in a healthcare center during a pandemic. She might decide to put you on an oral med like Xeloda for awhile.

Sending good thoughts your way!
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

kiwiinoz
Posts: 1151
Joined: Thu Jan 03, 2013 11:44 pm

Re: My CRC with liver mets journey

Postby kiwiinoz » Wed Apr 08, 2020 9:15 pm

rachelfromnyc wrote:
I also had an autoimmune condition going into my cancer diagnosis. As I was trying to understand how this cancer could have possibly happened since I don't have the typical risk factors (I'm under 50 years old, active/not overweight or anything and in general, have good habits as it relates to nutrition, etc.), I began to suspect the autoimmune disorder and cancer were related. However when I asked my oncologist and rheumatologist, they both said there's no link. As an aside, when I asked the oncologist how long the cancer had been growing, she said 10 years which lines up exactly with my autoimmune diagnosis. Go figure. Anyway, I didn't pursue it anymore but I often wonder how many cancer patients go in with a pre existing autoimmune condition since treating autoimmune diseases consists of immunosuppresants/other immune modulating drugs.


Hi Rachel,
What autoimmune disease did / do you have? I have Psoriasis and was taking an immune suppressant which suppressed T Cells to stop an overly active immune system. It was working well on the psoriasis but it perhaps worked too well and was most likely, according to my oncologist, the reason I got cancer. I simply note that you have a rhemuatologist, and wondered if you have Psoriasis too perhaps?
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

rachelfromnyc
Posts: 47
Joined: Fri Oct 04, 2019 11:32 am

Re: My CRC with liver mets journey

Postby rachelfromnyc » Thu Apr 09, 2020 10:58 am

If it IS paraneoplastic syndrome, the RA would go away or resolve with effective cancer treatment. Is that what you experienced or are you still feeling symptoms?


It's lupus that I have. Once I was put on medication, the symptoms went away and I was rolling along happily until the cancer diagnosis. The dose was taken down around 5 or so years ago but it was still something I had to take daily until chemotherapy started. But yes, what you said is above is what happened. Both my oncologist and rheumatologist agreed to take me off that drug once chemo began reasoning that chemo would treat both. So as of now, I don't have any issues related to lupus.

What autoimmune disease did / do you have? I have Psoriasis and was taking an immune suppressant which suppressed T Cells to stop an overly active immune system. It was working well on the psoriasis but it perhaps worked too well and was most likely, according to my oncologist, the reason I got cancer. I simply note that you have a rhemuatologist, and wondered if you have Psoriasis too perhaps?


The autoimmune disease was lupus (SLE) and it presented as lesions on my hands that never healed. So same as you, I had an overactive immune system. I was put on Plaquenil (generic: hydroxychloroquine) and it worked in that the leisions went away. In the lupus setting, I believe it acts as an immunomodulator by controlling certain antibodies so the body doesn't attack itself. That lead to my theory that in doing so, it also left the cancer unchecked and allowed to grow.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

User avatar
ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Apr 10, 2020 2:51 pm

Dr Kemeny reviewed the scans and agreed the lesions represent new activity. She wants to keep me on Vectibix and start me on FOLFIRI (previously had done FOLFOX) as well as pump chemo.

Not sure I expected anything different, but worried about the shift to FOLFIRI - what that means in terms of them feeling the tumor has developed tolerance as well as how I manage the new protocol.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

stu
Posts: 1376
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Fri Apr 10, 2020 4:00 pm

I can hear and understand your concern . However I don’t think you are where your mind is going ! I think it’s just another way to get you back to NED ! Realistically some people need a few years of treatment to ensure long term outcomes . It’s totally disappointing but it is the long term view we have here . I can remember well the disappointment in my mum’s face when she heard of her recurrence. The funny thing was it was at this point I totally felt it was the step she needed to ensure her future wellbeing. I am not talking in scientific terms just that gut instinct that all was in-fact going to be ok despite what was happening.
Can’t help you with the chemo aspect but someone else will of that I am sure .
You have no idea how I look back now and credit that chemo for giving her many years without treatment .
However it was her that had to endure it so she may have a totally different point of view . I know she prefers surgery over chemo any day .
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
Oct 2018. Another clear scan .

Claudine
Posts: 399
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Fri Apr 10, 2020 4:52 pm

I am really sorry about this setback, Ginabewell, but I can tell you that my husband had a fantastic response to Folfiri (while having fewer side effects from it that he had to Xelox). Hopefully a few cycles is all it will take to get you back to NED!
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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Mon Apr 13, 2020 5:50 pm

I think the shift to Folfiri is just to shake things up a bit. Folfiri is a strange beast - some people find it much easier to handle than Folfox, others are miserable. I needed Atropine during each Folfiri infusion for abdominal cramping and diarrhea. But I didn't have HFS like with Folfox and Xeloda.

Try to look at this as just a bump in the road on the way to NED! I know that's hard because I remember when people told me the same thing. But later on, I realized they were right, even though it felt like a ginormous bump at the time!

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

User avatar
ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Apr 13, 2020 10:38 pm

juliej wrote:I think the shift to Folfiri is just to shake things up a bit. Folfiri is a strange beast - some people find it much easier to handle than Folfox, others are miserable. I needed Atropine during each Folfiri infusion for abdominal cramping and diarrhea. But I didn't have HFS like with Folfox and Xeloda.

Try to look at this as just a bump in the road on the way to NED! I know that's hard because I remember when people told me the same thing. But later on, I realized they were right, even though it felt like a ginormous bump at the time!

Juliej


Well, Dr Kemeny had a last minute change of heart and pulled the Vectibix. I wondered aloud to my local oncologist and got the sense that she didn’t know either, her theory on it didn’t make sense (unless it was a change in strategy due to Covid and no longer wanting to pursue super aggressive treatment for smallish lesions?).

At any rate, I found the Vectibix rash BY FAR the worst side effect to date, so that news came as a relief.

I’ve thought a lot about why this recurrence is so emotionally deflating (other than the obvious). When I decided to keep working in the wake of my initial diagnosis, I got the feeling that if I recurred, THAT would be the time to quit because it would be a sign that I wouldn’t make it.

My therapist has warned me a few times of our brain trying to make sense of something so as to regain control. And I think that’s what I kind of tried to do - tell myself I would know what would happen if X happened.

The truth is that nobody knows what will happen. And my dominant emotion in the wake of the news wasn’t dread that this is going to kill me - just lots of sad that I have to get through it.

But when I got my all clear in Jan, I had a feeling it was too soon, and that I wasn’t done with cancer yet. I guess I have more to learn, it has more to teach me. Maybe the lessons I’ll learn will be deeper because of Covid - or maybe the insights I share on my Facebook-not-yet-blog will be more valuable because healthy people are scared today in a way that could make them more open to what I write. I sure hope so anyway.

Last night I was reading about medicinal marijuana and how Rick Simpson oil helps rheumatoid arthritis. The more I read, the more likely it seems that I just have RA and not paraneoplastic syndrome. But since RSO is a known anti inflammatory with at least anecdotal evidence as a cancer fighter as well - and since it helps me sleep at night - I figured worth a shot. My oncologist thinks the Dex in my chemo might help too. I did feel a bit better today so I took a second dose tonight. Fingers crossed!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: My CRC with liver mets journey

Postby lovelife789 » Tue Apr 14, 2020 6:04 pm

I’ve thought a lot about why this recurrence is so emotionally deflating (other than the obvious). When I decided to keep working in the wake of my initial diagnosis, I got the feeling that if I recurred, THAT would be the time to quit because it would be a sign that I wouldn’t make it.

My therapist has warned me a few times of our brain trying to make sense of something so as to regain control. And I think that’s what I kind of tried to do - tell myself I would know what would happen if X happened.


Hi ginabeewell,

Have been reading your journey but never replied to you directly (I'm bad with words). But I want to share with you that you are not alone feeling this recurrence is so deflating. I also felt the same when the doctor dropped the bomb saying I had a recurrence and I had to go through chemo again. Like you, I had FOLFOX (I had Erbitux a bit similar to Vectibix on the horrible rash...) before my two liver resections and the second round of chemo I was prescribed FOLFIRI and Avastin.

Erbitux was not nice, I had rash on the whole body including my scalp, so even my whole head was painful covered in rash. However, FOLFOX was not as bad, I had the neuropathy, I had first bite syndrome but not insanely intolerable. I thought it would be the same with FOLFIRI may be with more diarrheas. For me, the tummy part did not bother me, actually I didn't even have diarrheas, may be once or twice. But I had insane nausea, I exhausted all anti-nausea medication in the market and decreased dosage to 80% to pull through all 12 cycles. This is not to scare you, coz now looking back except the first two cycles when I had full dosage, it wasn't bad. It was only slightly annoying it's an "every 2 week" treatment, so you don't get as much rest like with FOLFOX being given every 3 weeks. Nevertheless, I still went to work but fatigue was comparably harder to fight than when I was on FOLFOX, not sure it was the treatment or because it was my second chemo... I had serious thinning of hair. My doctor told me most of his patients lost hair but not as much as I did. I got a wig from wig.com, it looked better than my real hair honestly. In summary, FOLFOX was easier for me, but FOLFIRI was not intolerable either.

I had the same thought as you did about quitting my job. After finishing my 12 rounds of FOLFIRI I quit. I didn't think a recurrence would mean a bad prognosis or anything (I really had a bad prognosis but that's not related to my decision), I just thought I wanted to give myself some time or a chance to myself/my body to live a different life, I had enough of a very hectic and stressful job. Been 4 months since I quit, didn't regret it for a second.

I also go to MSK for consultation, it was like so empty I didn't believe my eyes. Perhaps this not a convenient time to do chemo but may shorten the waiting time... may be? (trying to end this with a positive note :))

It took me several weeks to fully absorb the recurrence news. Give yourself some time, you are doing great. FOLFIRI was not easy but you will pull through.

Lovelife
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot


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