Please allow me to introduce myself

Please feel free to read, share your thoughts, your stories and connect with others!
retiredteacher
Posts: 109
Joined: Sat Oct 21, 2017 1:34 pm

Re: Please allow me to introduce myself

Postby retiredteacher » Mon Aug 05, 2019 12:37 am

OK. I have absolutely nothing of value to add to this conversation. But I truly appreciated and could identify with the Alice's Restaurant reference. Carry on ...
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Sun Aug 11, 2019 2:02 am

Hi boxhill,

boxhill wrote:I just want to clarify that the drug under discussion, which goes by various brand names, stimulates WHITE blood cell production (hence neutrophils), not platelets.


Yes, good clarification. Actually, it looks like a possible side effect of Filgrastim is reduced platelets: https://www.neupogen.com/. Yikes.

And cheers, retiredteacher.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Please allow me to introduce myself

Postby Rock_Robster » Sun Aug 11, 2019 4:22 am

MetastaticEquilibria wrote:Hi boxhill,

boxhill wrote:I just want to clarify that the drug under discussion, which goes by various brand names, stimulates WHITE blood cell production (hence neutrophils), not platelets.


Yes, good clarification. Actually, it looks like a possible side effect of Filgrastim is reduced platelets: https://www.neupogen.com/. Yikes.

And cheers, retiredteacher.

Yep, good point - thanks.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Tue Oct 29, 2019 7:03 am

A quick update on my situation:

Folfiri+Cyramza ended up not working out. To keep my platelets and neutrophils above chemo threshold required lowering the dose so much that it stopped working on the tumors.

To pile on the good news, I ended up hospitalized again with jaundice due to bile duct blockage. Let the Good Times Roll.

A biliary stent brought the bilirubin levels down. The cause of the blockage is not entirely clear. Could be regrowth of the liver tumors, though this is hard to discern from CT scans. Could be hardening tissue from the proton radiation. Or... something else? In any case bilirubin is only mildly elevated now with the stent. CT shows lower 2/3 of liver draining well, upper 1/3 not. Good enough for now.

CT also shows increase in spleen size, likely due to the same tumor or dead tissue blockage in liver (? My guess).

Started Lonsurf+Avastin. After first week, platelets down to just below threshold, so doctor said let’s try again in a week. You can guess the punchline: platelets even lower the second week. Going in this Friday to see if third time’s the charm. I Can’t Stand Up for Falling Down.

Will also be getting CEA and CA19-9 measurements this Friday. No good reason to expect they have improved, though, since I have only had half a round of Lonsurf since last set of measurements.

Starting to look into Plans, what are they now, D, E and F? In any case, Clown Time is Over.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please allow me to introduce myself

Postby Claudine » Tue Oct 29, 2019 9:47 am

Oh man, I'm so sorry to read all this. What an effin' disease. Good playlist though... Maybe add "I won't back down" (but not "Free Falling")!
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Tue Oct 29, 2019 3:36 pm

Claudine wrote:Oh man, I'm so sorry to read all this. What an effin' disease. Good playlist though... Maybe add "I won't back down" (but not "Free Falling")!


Good suggestions, thanks. Definitely not ready to back down yet.

Tangent: I knew a kid in high school who was a huge Tom Petty fan. Was always raving about what a genius he was. Recently learned that that kid ended up becoming Tom Petty’s friend and official biographer! Nice to see someone’s dream come true like that.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Please allow me to introduce myself

Postby Siti » Tue Oct 29, 2019 4:07 pm

I hate this disease! So sorry about your on-going issue with platelet count.

This is not chemo/cancer related but I contracted dengue fever many years ago and I was hospitalised for 5 days because my platelet count was depleting significantly. The best local remedy was to drink papaya leaf juice. Essentially cold pressed juice of papaya leaves — it worked for me almost immediately and it worked for numerous others, all friends, relatives or colleagues.

Before writing this post, I wanted to be sure that I wasn’t recommending something from an old wives tale but I am surprised to learned that there are clinical studies that worked. I’m not certain if the mechanism of action would work for chemo related side effects but no harm investigating further!
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Tue Oct 29, 2019 6:07 pm

Siti wrote:I hate this disease! So sorry about your on-going issue with platelet count.

This is not chemo/cancer related but I contracted dengue fever many years ago and I was hospitalised for 5 days because my platelet count was depleting significantly. The best local remedy was to drink papaya leaf juice. Essentially cold pressed juice of papaya leaves — it worked for me almost immediately and it worked for numerous others, all friends, relatives or colleagues.

Before writing this post, I wanted to be sure that I wasn’t recommending something from an old wives tale but I am surprised to learned that there are clinical studies that worked. I’m not certain if the mechanism of action would work for chemo related side effects but no harm investigating further!


Yes, I have read papers on papaya leaf extract being effective for low platelets due to oxaliplatin. I have tried it before, and in fact am taking some now, though I have never had any clear results in my case. Still, doesn’t seem harmful, so worth a shot on the off chance. But glad to hear someone else has heard of those studies, too. Thanks.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Please allow me to introduce myself

Postby Siti » Wed Oct 30, 2019 4:24 am

How are you extracting the juice? My mom used fresh papaya leaves, then pound them with a mortar and squeezed the juice into a small shot. I drank it raw, fresh. I don’t know if there is a difference but in the west, people take them as tea or pills.

Sending positive vibes your way!
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Wed Oct 30, 2019 5:05 am

Siti wrote:How are you extracting the juice? My mom used fresh papaya leaves, then pound them with a mortar and squeezed the juice into a small shot. I drank it raw, fresh. I don’t know if there is a difference but in the west, people take them as tea or pills.

Sending positive vibes your way!


Thanks!

We don’t grow much papaya around here, so I have been using pills and drops. Don’t know if effectiveness is lost, but the paper on oxaliplatin and papaya extract seemed to be using something similar.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please allow me to introduce myself

Postby Claudine » Wed Oct 30, 2019 9:39 am

Neat story about Tom Petty!
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Sat Nov 09, 2019 9:50 am

Update: against all reason and expectation, both CEA and CA19-9 went down. Liver function numbers still slowly improving. Does this Lonsurf stuff actually work, even just a half cycle’s worth?

Doctor cast a blind eye to rising-but-still-low platelets, and allowed me to have another half-cycle of Lonsurf, at 2/3 strength. No Avastin this time. Will find out in December what CT and tumor markers say.

So, as Dr. Alban would say, Sing Hallelujah!

Though I hardly feel like singing or even getting out of bed. This Lonsurf is almost as bad as Irinotecan. No diarrhea, but terrible fatigue. And I am in great daily pain in my abdomen, which makes It impossible to concentrate on anything else, or even eat.

We’ve tried all sorts of painkillers, and the most effective one seemed to be Loxoprofen. But Dr. is worried about damage to kidneys from long-term usage, so as a safer alternative he has prescribed copious amounts of Oxycodone. Which seems to work, more or less, but that whole addiction thing is a concern. (Had lots of fun weaning myself from Fentanyl after a previous hospitalization.) Hope I don’t have to fly internationally soon, because the paperwork and customs declaration seem unlikely to be fun.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please allow me to introduce myself

Postby Claudine » Mon Nov 11, 2019 12:49 pm

That's fantastic news ME! Well, the decrease in CEA and improved liver functions, at least. Not so much the pain :(
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Mon Nov 11, 2019 5:18 pm

Claudine wrote:That's fantastic news ME! Well, the decrease in CEA and improved liver functions, at least. Not so much the pain :(


Thanks!
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 52 guests