Pain and tingling of my left leg

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boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Pain and tingling of my left leg

Postby boswind » Mon Mar 11, 2019 2:20 pm

I have been on Irinotecan and Cetuximab for the last 13 months. For the recent two months I have felt moderate pain and tingling of my left leg while my right leg and arms are not effected. I'd like to know if any one has or had similar symptoms of pain and tingling. Now I have to take Ibuprofen and Tylenol every 4 hours.

I will start Keytruda treatment this Thur (Mar 14). The pain and tingling have not gone or become less severe, although my last chemo of Irinotecan and Cetuximab was done 2 1/2 weeks (18 days) ago.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

boxhill
Posts: 216
Joined: Fri Apr 06, 2018 11:40 am

Re: Pain and tingling of my left leg

Postby boxhill » Mon Mar 11, 2019 4:05 pm

What does your oncologist say about it? Does it seems to radiate down your leg from the hip, and if so in the front or the back? Did you have any kind of precipitating event? Does it feel at all electric, or is it a dull bone ache? Is it positional? Is there swelling? It could be many things, including neuropathy, a clot, a pinched nerve, you name it. If you haven't consulted the doctor about it yet, I think you should, and make sure it is taken seriously. No point in being a hero. :)

I had pain that I would call almost electric--radiating down the front--from a nerve problem, years before CRC. I had wrenched my piriformis muscle, which was putting pressure on an adjacent nerve. Assiduous targeted stretches and so forth did no good. Couldn't sleep without hydrocodone or the like. What finally fixed it was accupuncture, which I think is really great for nerve-related issues.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda

boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Re: Pain and tingling of my left leg

Postby boswind » Fri Mar 29, 2019 5:11 pm

@boxhill thank you very much. It took a while to figure it out. This week I had MRI scan on spine L4 and consulted a spine surgeon. The spine doctor did a few tests and found the pain on my leg is not from spine.

2 weeks ago I had an MRI CARDIC scan, which shows a clot around the catheter tip. That is, I have DVT (deep vein thrombosis); I am now on a blood thinner.

Not only did the 4-year old catheter start to cause DVT, but also it caused superficial thrombophlebitis (superficial vein inflammation). It is the superficial vein inflammation that causes the type of leg pain I am having. Unfortunately, The only medicine that helps is Ibuprofen type of pain killers. Blood thinners are for treating DVT only.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

boswind
Posts: 61
Joined: Fri Apr 11, 2014 12:04 pm

Re: Pain and tingling of my left leg

Postby boswind » Fri Mar 29, 2019 5:47 pm

@boxhill I just noticed you started Keytruda on Dec/31/2018. How are things going?
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
02.07.2018 - 03.06.2019, Centuximab + Irinotecan
90 rounds of chemos received (as of 12.27.18)
CEA: 9.8 as of 12.27.18
MSS, KRAS wild type, BRAF wild type
TMB = 12 mut/MB
03.14.2019 - Keytruda

boxhill
Posts: 216
Joined: Fri Apr 06, 2018 11:40 am

Re: Pain and tingling of my left leg

Postby boxhill » Sat Mar 30, 2019 10:46 am

Keytruda is great! No side effects so far, except perhaps a little fatigue, but not the hammer-like blows of chemo fatigue. I'm going to have a followup MRI of the liver area in May, and we'll see whether it is working. I hope it works for you...I gather that since you are MSS you are one of the high TMB people?

I'm glad they figured out what was causing your pain, anyway. Hope that the inflammation fades and you get some relief.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda


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