Update (treatments & CEA)

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rachelfromnyc
Posts: 41
Joined: Fri Oct 04, 2019 11:32 am

Update (treatments & CEA)

Postby rachelfromnyc » Fri Jun 05, 2020 5:15 am

Hi everyone,

I’ve been unable to sleep all night, having a lot of thoughts mostly about CEA. Plus I’ve got this 5FU bottle attached to me right now so that’s not helping. I’ve read a lot of old posts about CEA but wanted to share my specific situation to get feedback on not only that but also my treatments/current situation. To expand upon the information in my signature:

Diagnosed in May 2019. Colon primary, innumerable lung nodules, lymph nodes in the neck, abdomen and pelvis. I have had chemotherapy only, no surgeries or radiation. It’s to be chemotherapy for life. I just turned 37, this is crazy.

The primary tumor is located in the transverse colon right before it bends down on the left side. Pathology was “colonic mucosa with well differentiated invasive adenocarcinoma”. MSS, KRAS/BRAF wild, TMB 7.9. I have 9 mutations including p53. The lymph nodes in the neck were biopsied and positive. I have asked for the lungs to be biopsied but my doctor said it didn’t make any sense given they were so small and below the PET scan resolution and that the results would not change the type of chemotherapy she was ordering. The lung nodules will remain unchanged throughout my treatments.

CEA: 5/19 baseline- 13.2, 7/19- 3.9, 9/19- 4.3, 9/19, 4.8, 12/19- 2.3, 1/20- 2.5, 4/20- 5.4, 5/20- 9.9, 6/20- 11.7 (yesterday)

I started Folfox chemotherapy in June of last year and completed six rounds at max dose. No major issues with side effects, I cruised. Had a scan in October in which the primary and lymph nodes were shrinking and the lung nodules unchanged. However, they saw two new tumors in the liver (small but there). In the beginning, I asked my doctor how long this cancer was growing and she said 10 years. So I couldn’t understand how two new tumors in the liver could appear within four months and while I was on active treatment. She said they were probably there the whole time but missed on the initial CT and PET scans. Again I didn’t understand how that could happen since the CT was done at Lennox Hill and the PET at NYU, both reputable hospitals. I’m being treated at MSK now, btw. She then switched me to Folfiri with Avastin. Had another scan in December and the everything was shrinking, including the liver tumors. In January of this year, side effects became worse. I am now having nausea, vomiting, fatigue, etc. but the scans were good so I pressed forward. Another scan in March and at that time, the primary was down to 0.9 cm from 3.4 cm at diagnosis, lymph nodes continued to shrink and the liver tumors no longer seen. They resolved. Nice! Got a big hug from the doctor which I appreciated since she didn’t strike me as being into that but I’ll take it. I am continuing on with Folfiri and Avastin. Side effects becoming worse and at this point, I had dose reductions such that I’m currently at a little more that 70% of max dose. Additionally, I was given another anti nausea med in the IV, different anti nausea tablets to take home as well as steroids to take on days 2 and 3 of treatment. At first, I wasn’t taking them to see if the dose reduction was enough. It wasn’t and I was miserable. Now I’m taking everything. Another thing to mention is that since March, my treatments are spaced out to be every three weeks instead of every two in response to Covid.

Fast forward to today. I have had treatments 1-4 (19-22 overall) since the good March scan and I’m seeing a trend of three increasing CEAs. I’m very concerned, I'm panicked. Since the CEA of 9.9 in May, I have restarted the complementary therapies I had been doing this whole time but paused because of the pandemic. These are acupuncture, heat therapy and ozone. I’ve continued to take supplements. I went in to see my functional medicine doctor last week. We were doing expanded blood work, everything from standard CBC/metabolic to vitamins/minerals, thyroid, hormones, etc etc. on a frequency of every three months prior to all the restrictions due to Covid. I also see a second oncologist after scans to get her take and see if the treatment I’m being prescribed at MSK is aligned with what she would do. So far they are. But I’m thinking to make an appointment before the scan. I also see a psychologist weekly, facetime nowadays, and that is the one appointment I’ve always kept despite everything. I tried calling MD Anderson in Houston too but they are not taking patients seeking second opinions right now. I also got my scan moved up so its scheduled for the 23rd of this month.

I sent a note to the care team at MSK yesterday asking for an appointment to speak with my doctor about the CEA and moving up the scan to be even sooner. Still waiting to hear back. Lately, I only speak to the doctor when there are scans to discuss and speak to the NP in between. But I think I’d like to talk to the doctor now.

Outside of the 3-4 days during the treatment window, I actually feel great. The best I’ve felt since diagnosis. I’m cooking for myself and eating well. Sleep, digestion, mood, energy are all generally good. Since it’s nicer out, I’m getting outside to walk and ride my bike everywhere (no subway for me) but staying safe. I have a nice life for which I’m grateful. This recent CEA business has been a downer.

Thanks for reading. Please let me know what you think or if there’s other things you would like to know about me.

Rachel
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
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

Monimom
Posts: 20
Joined: Wed Jan 08, 2020 6:15 pm

Re: Update (treatments & CEA)

Postby Monimom » Fri Jun 05, 2020 8:20 am

Hi Rachel,

I don't know much as I am "new" to this disease as well. My DH was diagnosed with cc and liver mets, his liver had a couple very large and innumerable small... rendering him inoperable and "chemo for life" he's had 12 treatments and handles them well, there are issues but he gets through...so even though I don't have anything medical to share,
I wanted to reply, and pass along this,

(Although it's not me going through the disease physically, its equally difficult)

On a beautiful day last week I was sitting in front of my laptop pouring over all of my husbands last scan and lab results online, my gut was knotted and I was feeling the anxiety and hopelessness... while at my laptop I had a clear view out of the window to our front yard,

I found myself looking at the screen and looking back out the window, after a few minutes suddenly the big picture became crystal clear , and I felt almost embarrassed...

As I was staring at the screen squandering time reexamining his numbers and diagnosis ,trying to make sense of all of this, I was unknowingly , watching my husband , swinging an ax, splitting some old wood taking advantage of this beautiful day ...….

I realized at that moment , that I needed to be present in his physical well being, and not living by the "findings"...

It was a truly powerful moment , I am always telling my husband no one can tell us how long we have to live, and that we are all given the days the same way...
One at a time.

Prayers for you & this road we've found ourselves on.
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

texazgal
Posts: 155
Joined: Fri Sep 28, 2007 4:40 pm
Location: central Texas

Re: Update (treatments & CEA)

Postby texazgal » Fri Jun 05, 2020 8:56 am

Hi, as you can see Monimoms cea numbers compared to yours, cea is not a good marker for you. Those are mostly normal readings. My ceas are pretty small too, considering I had colorectal cancer in 2004 and am now fighting esophageal cancer stage 111. In fact, I sit here with a 5Fu pump on now, and have completed 3 of 12 treatments of Folfox. I also had initial treatment of radiation/chemo k kast summer. Guess it will be chemo for life now, however long that may be. Good luck to all of us fighting these horrible diseases.
DX rectal cancer Aug 04
Surgery Sept 04, perm ostomy, "BarbieButt" Sept 23, 04.
Dad passed '93 CC
DD 42 yo/w/2 polyps removed
June 2019 stage 3 esophageal cancer
Aug. 2019 28 radiations, 5 chemo
Nov. PET shows original tumor and mets resolved, 2 new mets in liver and bone.
May 2020 port installed, started Folfox hope to do 12 rounds, cure not expected

Monimom
Posts: 20
Joined: Wed Jan 08, 2020 6:15 pm

Re: Update (treatments & CEA)

Postby Monimom » Fri Jun 05, 2020 9:12 am

Hi again,
Just wanted to share the irony... right after I replied to you my husbands last CEA results were uploaded... his has increased as well. from 433 to 534... this is only his 4th marker , first increase.
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

Claudine
Posts: 386
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Update (treatments & CEA)

Postby Claudine » Fri Jun 05, 2020 10:39 am

Hello Rachel,
These damn CEAs! They cause so much anxiety... Last year when DH was on Folfiri/Avastin, after his first cycle it dipped strongly (from 58 to 17), then more slowly to a low of 3.2, then it slowly but regularly started going up again. I called his onc, who said that he'd keep an eye on it, but that since DH still had active tumors in him (that was before his adrenalectomy and L4 surgery), that was to be expected. The adrenal tumor kept shrinking (albeit slowly) while CEA values were creeping up, so the onc wasn't concerned. In my husband's case, even though CEA values never reached the really high values some people here have reported (his highest was 58), CEA is a good marker.
In terms of side effects, DH had 18 cycles of Folfiri/Avastin (or 19, I lose count) and they definitely got worse towards the end, with more nausea and fatigue; chemo is cumulative, so that's to be expected. His hair and beard have all grown back since his last infusion in January though :D
Hang in there! We found this combo to be very effective. Hopefully your next scan brings you some peace of mind despite the CEA 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 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

rachelfromnyc
Posts: 41
Joined: Fri Oct 04, 2019 11:32 am

Re: Update (treatments & CEA)

Postby rachelfromnyc » Tue Jun 30, 2020 7:58 am

Hi everyone and thanks for your support. A few things have happened since so here is another update. CEA continues to rise so it's been four in a row of that trend. The latest from last week is even higher than when I was first diagnosed and before I started any treatments. I also had my scan last week. Some lymph nodes grew, some stayed the same and some shrank. The nodes in the lungs are "solid and cavitary" so it looks like some are dying from the inside. With the exception of one 4 cm lymph node in my back, all the others are 1 cm or less and my doctor told me that she wasn't worried about them. Better news is that there's no disease in new places, the primary is stable and liver is clear (I previously had two lesions that resolved). I complained big time about the side effects so she suggested taking away the 5FU and just have me on irinotecan and avastin every other week (I was previously doing every three weeks of FOLFIRI and avastin since COVID started). I've also been getting lower back pain but she thinks its just general lack of activity and advised me to stretch and do yoga. But I think it's the huge lymph node to blame. Last week I finished the first round of just irinotecan and avastin and while I enjoyed not having the 5FU bottle, it was still awful. Nausea, vomitting, unable to sleep because I'm so hot, etc. etc. For the last few rounds, I've also I had this lump in my throat/stomach feeling, just around treatment time and lasts a few days. Probably least of my worries but still uncomfortable. Despite the mixed results, I was actually ok feeling until...

Yesterday I went to see another oncologist. This is someone I see after scans just to check my primary oncologist. Up to now, they've been in agreement so no issue. But yesterday, she said I should've never been on the 3 week schedule. I explained that was the hospital's policy and although she doesn't blame them, she said COVID isn't going away anytime soon and we have to keep on going with the regular schedule for treatments. She also doesn't think I should be on just irinotecan only and that the backbone of the treatments is either 5FU and oxalyplatin or 5FU and irinotecan so I need to always be on one of those if they're working. The tweaks should be to the avastin or other add ons. She felt very strongly that I go back to my primary oncologist and ask to be put back on FOLFIRI, every two weeks. What to do?

Regarding my side effects, she was surprised at how much nausea I was having and she has treated so many patients with FOLFIRI and they're able to tolerate for many years. For example, she has a patient that still going that been on this for like 10 years! She thinks the nausea is being caused by gastritis and that my stomach is inflammed and is a combo of being chemo-induced and self-induced (stress, etc) and that the lump in my thorat feeling is acid. So that any nausea drugs they give me won't work. She suggested omeprazole and carafate and to see my GI doc if it doesn't improve. Thoughts?
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
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

Claudine
Posts: 386
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Update (treatments & CEA)

Postby Claudine » Tue Jun 30, 2020 10:28 am

Ouch that sounds miserable - and very stressful. My husband was on Omeprazole nonstop while doing Folfiri + Avastin; without it, he would get awful gastric reflux and heartburn. He's off now, still has some gastric issues but they could be related to wearing a tight corset 24/7 and/or taking aspirin - 325mg several times a day in conjunction with Tylenol, to help control sciatica pain. If he gets worse, he'll start taking it again.
I hope you sort your chemo issues and that the larger node starts shrinking!
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

rachelfromnyc
Posts: 41
Joined: Fri Oct 04, 2019 11:32 am

Re: Update (treatments & CEA)

Postby rachelfromnyc » Tue Jun 30, 2020 12:39 pm

Ouch that sounds miserable - and very stressful. My husband was on Omeprazole nonstop while doing Folfiri + Avastin; without it, he would get awful gastric reflux and heartburn. He's off now, still has some gastric issues but they could be related to wearing a tight corset 24/7 and/or taking aspirin - 325mg several times a day in conjunction with Tylenol, to help control sciatica pain. If he gets worse, he'll start taking it again.
I hope you sort your chemo issues and that the larger node starts shrinking!


Aha! Good to know I'm not along with the gastric issues. That's exactly what I feel, gastric reflux and heartburn. Did your husband feel it all the time or just around treatments? For me it's just around treatments. My last one was Thursday and today is the first day I actually don't feel it, so that's 5 give or take.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
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

roadrunner
Posts: 25
Joined: Sun Jan 12, 2020 8:46 pm

Re: Update (treatments & CEA)

Postby roadrunner » Tue Jun 30, 2020 2:46 pm

For what it’s worth, and since you asked, I think it’s worth taking your “second” oncologist’s views re: 5FU seriously. When I was on FOLFOX, I had a big UE-DVT, neutropenia, arrhythmias, and massively elevated liver enzymes, so I explored the alternatives to 5FU (both with my team and through obsessive independent research). These discussions and the research confirmed the view that the 5FU is really the backbone of colorectal cancer chemo treatment. Irinotecan and other drugs are (with certain rare exceptions) really second-line therapies. They can work, but 5FU still stands alone in terms of effectiveness. Also, it was working for you, no? It’s a tough drug, but through meds and dosing is tolerable for most. I’m about to go back on FOLFOX, and not looking forward to it, but I do believe in the effectiveness of the drug. It shrank my Stage 3 rectal tumor by 70-80% in 4 treatments (w/Oxaliplatin). One last point — could Xeloda/Capecetibine be worked in to your therapy as an alternative to 5FU infusions? It is an oral drug that is metabolized into 5FU, and is way easier to tolerate in my opinion. For example, I had the horrid GI symptoms you complain of on infusional 5FU, but nearly forgot I was taking the Xeloda. Then again, I don’t know if that’s an option for you. Hope these comments are useful. Good Luck!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Claudine
Posts: 386
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Update (treatments & CEA)

Postby Claudine » Tue Jun 30, 2020 2:49 pm

rachelfromnyc wrote:
Ouch that sounds miserable - and very stressful. My husband was on Omeprazole nonstop while doing Folfiri + Avastin; without it, he would get awful gastric reflux and heartburn. He's off now, still has some gastric issues but they could be related to wearing a tight corset 24/7 and/or taking aspirin - 325mg several times a day in conjunction with Tylenol, to help control sciatica pain. If he gets worse, he'll start taking it again.
I hope you sort your chemo issues and that the larger node starts shrinking!


Aha! Good to know I'm not along with the gastric issues. That's exactly what I feel, gastric reflux and heartburn. Did your husband feel it all the time or just around treatments? For me it's just around treatments. My last one was Thursday and today is the first day I actually don't feel it, so that's 5 give or take.


Whenever he would eat; I don't think it mattered how far he was from the infusion...
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

roadrunner
Posts: 25
Joined: Sun Jan 12, 2020 8:46 pm

Re: Update (treatments & CEA)

Postby roadrunner » Tue Jun 30, 2020 2:58 pm

Sorry, one more point: I re-read your earlier posts and saw that FOLFIRI appeared to be better than FOLFOX for you. So perhaps a question for both oncologists is whether the FOLFIRI gains were better attributed to the irinotecan/avastin alone or *with* the 5FU (a sinergystic effect, if that makes sense). I believe I do recall seeing studies indicating that irinotecan, at least, was not super effective without complementary 5FU in many cases. Overall, I’d hate to lose the 5FU unless it was either impossible to tolerate or clearly not beneficial.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

rachelfromnyc
Posts: 41
Joined: Fri Oct 04, 2019 11:32 am

Re: Update (treatments & CEA)

Postby rachelfromnyc » Tue Jun 30, 2020 5:06 pm

Thanks roadrunner, everything you said is useful. I'm coming to the conclusion that I have to go back on 5FU. It's been more difficult because the more treatments I have, the longer it takes for me to bounce back and the more days I feel awful. But if I have to, I'll do it. And yes, it was working for me. Shame that COVID hit when it did, it actually seemed like I was getting it under control before being put on the every three week schedule. I had the primary shrink about 70% between FOLFOX and FOLFIRI. I did also ask about xeloda but the response was that it can't be given with irinotecan. Xeloda is the inactive form of the drug and has to go through the liver to become active, unlike the 5FU in the bottle and problem is, irinotecan also goes through the liver. So the worry is if that's too much for the liver. However, I will ask which of the drugs is giving the most benefit and if its 5FU perhaps I can argue to remove irinotecan instead and move to xeloda. I'll think about that. Again, thanks for weighing in and good luck to you also!
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
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

roadrunner
Posts: 25
Joined: Sun Jan 12, 2020 8:46 pm

Re: Update (treatments & CEA)

Postby roadrunner » Tue Jun 30, 2020 5:28 pm

It may also be worth checking out the review of studies linked below also. It directly addresses the question. Seems to suggest some DFS benefit to the combo therapy, but concludes that both options are “reasonable.” If the link doesn’t work just google “Irinotecan chemotherapy combined with fluoropyrimidines”.

https://www.cochranelibrary.com/content ... tLanguage=
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

radnyc
Posts: 434
Joined: Tue Apr 06, 2010 6:32 pm

Re: Update (treatments & CEA)

Postby radnyc » Thu Jul 02, 2020 3:54 pm

Please look at Jack&Katies mommy’s post above. Keytruda might be a life-saving option for your case! I would DEMAND my oncologist look into it:

“The FDA has approved the immunotherapy Keytruda for solid tumors with a tumor mutation burden of 10 or greater. This means that CRC patients with MSS tumors (with TMB of 10+) are able to get insurance coverage for the use of Keytruda! My oncologist had to petition and appeal to get my insurance to cover Keytruda for me. I have been in it for over 2 years and am a “complete responder.” I am MSS (and all my chemo options were no longer working. I had cancer in lymph nodes near my lungs when I started Keytruda in May 2018). My doctor ordered Foundation One testing and found that I had a TMB of 11....and thought that Keytruda was a final option to try. Today I am cancer free (9 years after initial diagnosis of stage IV colon cancer and lots and lots of chemo and surgeries and rfa’s.

https://www.fda.gov/drugs/drug-approval ... lid-tumors
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

rachelfromnyc
Posts: 41
Joined: Fri Oct 04, 2019 11:32 am

Re: Update (treatments & CEA)

Postby rachelfromnyc » Fri Jul 03, 2020 3:46 pm

Definitely agree with you radnyc. I've been following that thread with great interest for sure. My TMB is 7.9 but there was mention of having it redone to see if it was affected by chemo. Regardless, it's on my list of things to ask when I see my doctor next.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
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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