oxaliplatin side effects - 9 years after treatment

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: oxaliplatin side effects - 9 years after treatment

Postby Robino1 » Wed Dec 13, 2017 9:52 am

More than likely. If it has THC in it you will need to get it from a dispensary, depending on where you live. CBD oils and such are legal in all 50 states. They do not have THC in them are are made from hemp instead of marijuana.

I'm on the fence of whether or not CBD oil does anything. I'm not using it regularly so that pretty much colors my experience. I think it depends on the individual and their chmistry make up. Also could have something to do with mind over matter. It's amazing what the brain is capable of doing.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

delemur
Posts: 13
Joined: Fri Dec 08, 2017 10:54 pm

Re: oxaliplatin side effects - 9 years after treatment

Postby delemur » Wed Dec 13, 2017 12:45 pm

susie0915 wrote:Where do you get this? Do I have to go to a dispensary?


Yes. The salves I used have both THC and CBD in them so you have to get them from a dispensary.
- Sex: Male
- DX Age: 41
- Tumor Location: Proximal = 9 cm; Distal = 1.5 cm
- Tumor Type: Adenocarcinoma
- Tumor Size: 1.7 x 1.2 x 0.8 cm
- Tumor Grade: G2: Moderately differentiated (intermediate grade)
- Stage: IIIB
- Positive Lymph Nodes: Yes
- Radiation + Chemo: 03/16/17 - 29 days / 3000mg Capecitabine
- Surgery: 05/16/17 - LAR & Diverting Ileostomy
- Chemotherapy: 06/16/17 - 62 Days CAPOX / 56 Days FOLFOX
- Surgery: 11/27/17 - Ileostomy Reversal

Ragnorsdotter
Posts: 2
Joined: Sun Sep 08, 2019 3:54 pm

Re: oxaliplatin side effects - 9 years after treatment

Postby Ragnorsdotter » Sun Sep 08, 2019 4:20 pm

Thanks so much for saying this Debbie I had mine as adjuvant therapy after successful surgery for stage 3c which is bad but i really miss my brain i was lucky to be put in a trial by my surgeon where i had 3 months instead of standard 6 months my oncologist was livid about that. I had a lot of issues that she ignored and when 3 years after I became totally disabled with chronic pain and fatigue she was incredibly nasty told me not to come back except for scan referrals. All along she refused to help w documentation that wd have allowed me to take advatage of partial paid leave benefits or short term disability and as it turns out when I had no choice but to pursue them I found hospital had contract for disability reviews with my employer. But I really started having the pain and fatigue during chemo and I figured it would pass. She made me feel unstable when I would ask for help and that frightened me. I couldnt lose my health insurance so i had to work in that condition which led to bad reviews and eventually attempts to remove me from my job. Had i taken leave i may have recovered better or made better decisions. I had read in the bad reviews that i wish id read earlier that she was a politician before all else. I just had such faith in the hospital because my surgeon was truly a saint. I am not sure i needed the oxaliplatin considering this was adjuvant therapy, I wonder if something with less side effects would have sufficed but i didnt know a thing and was so terrified to leave my 3 kids orphans i completely put myself in her hands. I think she was studying its effects on my eggs because she would make me get tests from my gynecoligist that she could have ordered but for some reason didnt want to and my gyn thought they were odd requests. As those reviews said she was a charmer until you were deep into treatment and then she went cold apparently didnt visit her dying patients. So as others have said I am here perhaps it saved us but quality of life is a big issue I had to fight rooth and nail for disability retirement once I realized I was not getting better. I get that they are not social workers and that the research can help other people but they know very well that they understate things that affect our ability to plan for the future yes i survived but not to heal myself or my children from trauma of uncertsinty and the changes I wemt thru that i did not understand but to fight to keep my job and insurance when I could hsve had 2 years partially paid leave.

zephyr
Posts: 244
Joined: Thu Aug 18, 2016 7:31 am

Re: oxaliplatin side effects - 9 years after treatment

Postby zephyr » Sun Sep 08, 2019 7:15 pm

susie0915 wrote:I'm a year and a half out of treatment, and my neuropathy in my feet hasn't really improved... My neuropathy in my hands has improved I used to drop things quite a bit. My feet don't hurt just tingle and feel weird. Doesn't prevent me from doing anything, but barefoot on hard services is uncomfortable. I generally wear shoes or slippers. Now that it is getting cold I think it can make it worse. I don't know what solutions there are. My oncologist just says it takes time and may never go away. It is quite annoying.


Same here. I'm almost 3 years out from oxaliplatin.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

NHMike
Posts: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: oxaliplatin side effects - 9 years after treatment

Postby NHMike » Mon Sep 09, 2019 7:31 am

This is a revival of a thread from two years ago but it's always relevant. I have no improvement from neuropathy and I'm 15 months out so I expect that this will continue. I read a paper on the long-term side-effects of Oxaliplatin and Cisplatin a few days ago and it talked about medical effects and that it's an area that we don't know about but the platinum drugs have been in use for about fifteen years and there are a lot of studies on the side-effects of platinum-based drugs so the area will receive a decent amount of attention going forwards.

One of the papers said that the measured levels of platinum in blood were still strong after seven years. The thought came to me that losing blood (as in donating it) could deplete platinum levels as the body made more blood to makeup for the lost blood. I don't know that donating blood is a good idea, though, with platinum in it. I haven't looked up the guidelines on platinum chemo. In general, I do think that you can donate blood some period of time after chemo ends.

I am focusing on Yoga Balance Poses to counter the effects of the neuropathy in my toes. I do Warrior I, II, III, Tree Pose and Half-Moon Pose regularly (4-5 times a week) and have recently added a stretch similar to Side-Angle Pose. These poses help with flexibility and core strength too. I'm sure that there are other poses that help with balance but this is a core set that I do and they're easy to remember. I also do regular training to hit as many muscle groups efficiently as possible and these are deadlifts, squats, shoulder press and bench press. I like to do pullups as well because I enjoy doing them and they take very little time.

As far as chemo brain goes - I definitely felt it while under treatment. I have some cognitive loss but I can't tell if that's due to the chemo or just the normal aging process. I try to play chess regularly, debate, analyze and reason and my job is moderately math-based so I get some exercise there. I am trying to read more books as well.

So I'm fighting the downsides of platinum-based therapy with what I think helps.

Medical science does not know the long-term outcomes. We were all science experiments and our data is used to benefit the next set of patients. One of my coworkers had Breast Cancer in the 1980s or 1990s and was treated with a chemo drug that was later found to cause MS. She has MS and she can't walk now. She was in a lot of pain earlier this year but I'm chatting with her and she is doing somewhat better physically with PT but I'm not sure about her pain (I asked). But her life was extended by a few decades before symptoms started showing up.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

MetastaticEquilibria
Posts: 40
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: oxaliplatin side effects - 9 years after treatment

Postby MetastaticEquilibria » Mon Sep 09, 2019 11:41 am

I am over a year since having to stop oxaliplatin, and feet still feel cold and half numb. Hot water helps — a really hot bath, even just a foot bath, makes them feel a bit better for a while. Hiking or other exercise helps, too. Anything to get the blood flowing, I guess.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

Claudine
Posts: 88
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: oxaliplatin side effects - 9 years after treatment

Postby Claudine » Mon Sep 09, 2019 12:18 pm

My husband is nearing 1 year since finishing Xelox and if his hands have definitely improved, his feet have not (that seems to be the case for others, from what I read here). I massage them every night and that helps. The worst is when he's sitting for long hours at the computer. A real bummer because we love hiking and that's definitely much more limited now... And Xelox didn't work, so he got all this nasty neuropathy for naught :(
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 (activity on PET scan, no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm hypermetabolic left adrenal mass 03/14/2019, 4.4 cm 05/21/2019
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3
Scan 05/21: Multiple small lung nodules shrinking or stable compared to 03/14 scan.

Ragnorsdotter
Posts: 2
Joined: Sun Sep 08, 2019 3:54 pm

Re: oxaliplatin side effects - 9 years after treatment

Postby Ragnorsdotter » Thu Sep 12, 2019 12:42 pm

The neuropathy is well documented but metal exposure and autoimmune connections are not I am sure it is an open secret among professionals but it sucks that they don't prepare us for the possibilities. Planning would make the extra time that it may buy us have greater quality of life. According to articles this is becoming more of a concern as we have longer life spans (google the excellent long term survivorship challenges colorectal cancer patients) but let's be honest that does not happen. Totally understandable that doctors dont have time or necessarily need the skill sets involved to be good doctors but there needs to be more investment in health educators and social workers and when you are in that terrifying place it should be provided not just available in a CYA capacity I know I was not together enough to reach out for that kind of support. And if such practicioners are not considered serious members of the health team it is a problem. We deserve at least this much

Gravelyguy
Posts: 199
Joined: Thu Jul 05, 2018 6:03 pm

Re: oxaliplatin side effects - 9 years after treatment

Postby Gravelyguy » Fri Sep 13, 2019 9:11 am

For me the hardest part post Oxy chemo was the brain impairment. Everyone said how good I looked but I knew, and so did my family to some extent, that I was not as sharp as I was pre chemo. It took over a year to not stumble over words and to be able to make a quick response to a question. These are tough skills to not have when you are a teacher. I am thankful that I am nearly back to pre chemo sharpness but nobody told me it would take as long as it did.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0


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



Who is online

Users browsing this forum: Google [Bot] and 21 guests