Low Platelets, Surgery, and Chemo Dilemma

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DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Low Platelets, Surgery, and Chemo Dilemma

Postby DebZ » Sun Aug 19, 2018 5:06 pm

I'm once again at the crossroads and uncertain which way to go. Hopefully some of you have experience or suggestions!

My continuous low platelet counts caused me to sporadically get Folfox this past late winter into spring. With all the breaks, my CEA started climbing and is now 145. Scans show growth in lung mets and two new liver mets. In early August I started Stivarga and had to stop at day 11 due to extreme foot syndrome and rash. I contacted NIH but without the required platelet count of 100,000 (mine are continuously at 40s or low 50s), I don't qualify for any trials.

My hematologist wants a bone marrow bioposy (scheduled this week) to rule out issues there with platelet count, and we're fighting insurance which denied immune globulin infusions to boost count. So now I'm scheduled for splenectomy in beginning of September, but I'm not certain that's the right decision. With that big of surgery, I won't be getting any chemo until October (my last treatment of Folfox was May 23, then one week of Stivarga at only two pills a day).

Anyone been where I am right now? Should I try to ablate (if possible, have not had consult yet on that) liver tumors and do chemo with low platelets? My oncologist will give me if they don't drop any lower, and if we can get insurance to approve infusions to boost them, it's still a temporary fix. Or get splenectomy, which is major surgery and could fix platelet problem but no one knows for certain. I'm so confused!
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

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Jack&KatiesMommy
Posts: 521
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Low Platelets, Surgery, and Chemo Dilemma

Postby Jack&KatiesMommy » Mon Aug 20, 2018 9:08 am

Deb:
Since you are MSS, I would suggest having your tumor tested at Foundation One. If you have at least moderate mutation burden (I had 11 mutations including the KRAS mutation like you)then even though immunotherapy usually doesn't work for MSS patients, it may work for you. I tried this as a last resort in May...and my CEA is down to normal range and the lymph nodes in my lung area have shrunk back to normal size...with just Keytruda.

It would definitely be worth checking into....
Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: Low Platelets, Surgery, and Chemo Dilemma

Postby DebZ » Mon Aug 20, 2018 3:04 pm

I did Foundation One testing three years ago, and actually it was your story here, Cynthia, that made me ask my oncologist if I need a retest after so much time. He was going to contact them. I'm not sure if I'd need a bioposy of a tumor, or just blood work. Does Keytruda effect platelet count a lot?
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

User avatar
Jack&KatiesMommy
Posts: 521
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Low Platelets, Surgery, and Chemo Dilemma

Postby Jack&KatiesMommy » Wed Aug 22, 2018 9:55 am

Deb:
I am not sure if it would affect platelet count. Mine has been low for years (mine runs in the 80's) and it hasn't changed during the last 4 months on Keytruda.
Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan


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