Removing Oxipltin good or bad??

Xenia princess warrior

good afternoon,

I am my husband caregiver and I was wondering if anyone else went on maintence chemo? He has colon cancer which metisized to lungs and kidneys. He was on oxiplatin,avastin, levarocon, 5fu pump, the 48 hr bag of 5fu wore home, then we would return to remove bag and get neulasta. He has had 12 treatment, his original CEA was 6800 now 33, he had good shrinkage but last scan(May) showed very little shrinkage. His doctor was worried about neuropathy & damaged other organs so they decided for him to no longer be on oxiplatin. I know he is worried as I that they took him off the oxiplatin that he will have growth. Has anyone been on this treatment then changed?

Trubrit

Hello

Removing Oxaliplatin is a good idea, when the body either reacts, rejects or cranks up the side effects, especially the neuropathy. 

I have long-term neuropathy caused by Oxaliplatin, and if your husband can avoid that, it is best.

There are many others here on the forum, who have changed from the Oxi to other chemo cocktails, and are doing well. 

Its all so scary. Ask as many questions as you like, you will be sure to find someone - or many - who can answer you. 

Tru

Annabelle41415

Oxi

When a medication is giving him neuropathy it's time to quit.  Mine also is permanent, like Tru's, and even asked the doctor to stop it at treatment 5 but she didn't and now suffer daily.  If he stops that there is also other treatments that he could use.  I'm glad to hear he has such a positive reduction in CEA from the treatment, but it could be they can put him on something else that will continue to help.  My doctor wouldn't switch me but ask your doctor some questions about what their opinion is.  Wishing him the best.

Kim

Xenia princess warrior

Thank you

thank you for your help, being on it has helped him greatly but we were concerned when they took him off, thanks for the reassurance.

have a good day

 

Macdougal

Switched to Folfiri

I was on a similar aggressive cocktail and removed the oxali as soon as the neuropathy in my fingers and toes became permanent.  My CEA peaked at 246 and came down to 46.  Your husbands drop is so dramatic it is a real cause for celebration.  I’m now on Folfiri but had to drop the Avastin for 3 cycles for a biopsy and scope.  I’m now back on Avastin but the last full workup prior to that showed a CEA up 50%, continued minor shrinkage of the big tumors but minor enlargement of the small tumors.  I’m eager to see the effects of returning to Avastin.  So the chances of growth are real (for me, hopefully not your husband) but I have faith in the Avastin and am glad to hear he’s on it.  

Macdougal

Switched to Folfiri

whoops duplicate post.

Update  - I wasn’t expecting CEA results for 3 days but just got them and my CEA is down 10 points to 61.  Yay Avastin!  I wish you similar results.

 

Joan M

I was on maintainence chemo for 13 months

I had 8 round of Folfox with Avastin from March 2016 tro July 2016 then went on Xeloda and Avastin every 3 weeks until August 2017.  My doctor said it stopped working for me so wanted me to start on Folfiri. My tumors had shown slight growth, so it wasn't too scary.   

I hope your husband does well on maintainence chemo.  Some people are on it for years with no tumor growth. 

Xenia princess warrior

Macdougal said:

Switched to Folfiri

whoops duplicate post.

Update  - I wasn’t expecting CEA results for 3 days but just got them and my CEA is down 10 points to 61.  Yay Avastin!  I wish you similar results.

 

Good news the Avastan is

Good news the Avastan is working. Have a good day

Xenia princess warrior

I can not thank you all

I can not thank you all enough for the reassuring words. May each of you have a good day

Annabelle41415

Xenia princess warrior said:

Good news the Avastan is

Good news the Avastan is working. Have a good day

Wonderful

I'm glad it's working.  If you have any future questions, please let us know.  And you have a great day too.

Kim

Mommy T

I was pulled off of Oxaliplatin

I was pulled off Oxaliplatin after my 5th cycle due to optical nerve swelling in both eyes. My vision issues started in my 4th cycle but I dealt with it. Called my local Oncologist, he told me it had nothing to do with chemo drugs.  I never had problems with my eyes prior nor did I have problems in my good week.  I was only having major symptoms during chemo treatment.  I listened and went for my 5th cycle - mistake - I lost vision in both eyes ONLY for seconds,  every 45 min. or so.  It was enough for me to say no more.  I called an eye doctor and he too did not want to admit it was chemo drugs. I have 20/20 vision. I had called my Oncologist at UCD and she mentioned I fell in the 1% class of vision issues on Oxaliplatin.  To me the quality of life is more important than quanity, at this point. I am having to get a spinal tap to relieve pressure on my brain to help my optical nerve. Might put me on another drug, depending on the pressure in my spine.  Just thankful every day I wake and have another day with my family.

Mommy T

I agree SandiaBuddy

I agree with your comment. I was very frustruated with the Oncologist and Opthomologist.  I had researched it myself and found case studies showing vision problems with Oxaliplatin. Another article showed Ocular changes with Oxaliplatin. "Ocular Toxicities" It sounds like they are just now finding these things out because they are using the drug more often to fight colorectal cancer and it does look like it is working for alot of patients. A quote from one of the articles "Oxaliplatin will continue to be used widely, so clinicians treating patients with it must be alert for unusual toxicities such as those described in the article." Clinical Journal of Oncology Nursing. It does sound like it is reversable but if it goes on long it might cause blindness. These drugs are nasty but they have to be to fight the cancer.

SandiaBuddy

Mommy T said:

I was pulled off of Oxaliplatin

I was pulled off Oxaliplatin after my 5th cycle due to optical nerve swelling in both eyes. My vision issues started in my 4th cycle but I dealt with it. Called my local Oncologist, he told me it had nothing to do with chemo drugs.  I never had problems with my eyes prior nor did I have problems in my good week.  I was only having major symptoms during chemo treatment.  I listened and went for my 5th cycle - mistake - I lost vision in both eyes ONLY for seconds,  every 45 min. or so.  It was enough for me to say no more.  I called an eye doctor and he too did not want to admit it was chemo drugs. I have 20/20 vision. I had called my Oncologist at UCD and she mentioned I fell in the 1% class of vision issues on Oxaliplatin.  To me the quality of life is more important than quanity, at this point. I am having to get a spinal tap to relieve pressure on my brain to help my optical nerve. Might put me on another drug, depending on the pressure in my spine.  Just thankful every day I wake and have another day with my family.

"never heard of that side effect"

So many of us on this board have been told by our doctors that they have never heard of a side effect, when a little research shows that it is a known side effect.  This experience is frustrating and dangerous.  I really am not sure if they are uneducated as to the side effects of the drugs they use, or if they use the "never heard of it" statement as a strategy to encourage "compliance."

Annabelle41415

SandiaBuddy said:

"never heard of that side effect"

So many of us on this board have been told by our doctors that they have never heard of a side effect, when a little research shows that it is a known side effect.  This experience is frustrating and dangerous.  I really am not sure if they are uneducated as to the side effects of the drugs they use, or if they use the "never heard of it" statement as a strategy to encourage "compliance."

I'm so sorry

You must have had a very extreme case with the eye issues and for that I'm so sorry.  I'm glad you got a reduction and hopefully your vision will continue to improve.  My eye's were also affected and just being in to the eye doctor told them that chemo made my vision totally worse.  My eyes would twitch and go around my eye balls and lose focus but only for short periods but it would happen often and no one wanted to contribute it to the chemo.  I'm just wishing you the best forward and glad you quit that oxy drug that is causing all of this. 

Kim

Mommy T

Annabelle41415 said:

I'm so sorry

You must have had a very extreme case with the eye issues and for that I'm so sorry.  I'm glad you got a reduction and hopefully your vision will continue to improve.  My eye's were also affected and just being in to the eye doctor told them that chemo made my vision totally worse.  My eyes would twitch and go around my eye balls and lose focus but only for short periods but it would happen often and no one wanted to contribute it to the chemo.  I'm just wishing you the best forward and glad you quit that oxy drug that is causing all of this. 

Kim

I am concerned though of quiting oxi

Thank you for your post back. The doctors have no other course for me but to wait for my follow ups. Now, that I stopped - I question the intrigity of the cycles that I finished.  I can't tell you weather chemo actually worked for me.  I am frustrated - they left me with a bunch of side effects but it sounds like everyone is in the same boat.  The doctors check on us but we have months in between to deal with other issues. I guess it is a waiting game for everyone diagnosed with cancer???  We just need to live life everyday and make the best of it.  I feel very close to everyone on this blog even though I haven't met anyone in person.  It is nice to have people to chat with. 

Annabelle41415

Mommy T said:

I am concerned though of quiting oxi

Thank you for your post back. The doctors have no other course for me but to wait for my follow ups. Now, that I stopped - I question the intrigity of the cycles that I finished.  I can't tell you weather chemo actually worked for me.  I am frustrated - they left me with a bunch of side effects but it sounds like everyone is in the same boat.  The doctors check on us but we have months in between to deal with other issues. I guess it is a waiting game for everyone diagnosed with cancer???  We just need to live life everyday and make the best of it.  I feel very close to everyone on this blog even though I haven't met anyone in person.  It is nice to have people to chat with. 

Symptoms

If you ever find symptoms that you think are weird or unusal please contact your doctor and don't wait months in between appointment times to do it.  Call the office right away.  My nose bleeds got so often that calling the doctor was the only way that I'd found out it was common - wait they didn't tell me that.  Yup, they don't tell you a lot so call the doctor to find out if it is common.  I'm glad that you found this group helpful. Ask away as we are always here to help.

Kim

plsletitrain

Oxali and side effects

I realized the oxaliplatin was really a tough one.  I had it discontinued on the 7th round.  But I guess it is effective because it shrunk my lung tumor to more than half.  But I had it stopped so it growed again.  I might go through it again as I just had a lung met removed but who knows.  I've always set the line that quality of life is more important to me so my stand in this is: as long as I can tolerate the side effects, I'll try to do it.  Good luck on your decision.  May you find peace in moving forward.

TerryGibbons

I was discharged from

I was discharged from Auckland (NZ) hospital yesterday clear of cancer !  My cea is down to 1.8 after 12 cycles of Folfox5 but my fingers and toes are very annoying. They stopped the Oxy about cycle 8 .I am feeling blessed compared to some of the people i have seen at Oncology. 

Cancer is a killer and we appear to talk about it much easier now as it used to be a subject (Bowel) tabu. 

Best of luck everyone, take care. Terry 

jland

I was on it for a year

I was on Oxaliplatin, Avastin, and Xeloda For 12 months (cycles). They warned me that the Oxaliplatin would cause neuropathy in my hands only if I touched something cold or metal like a shopping cart. I also could not drink anything cold for the two to three weeks after my infusion. It always went away after three weeks. The Xeloda for me was the worst of all three. It dried everything out. My eyes became criticaly dry and I could no longer read anything without reading glasses. I also had hand and foot syndrome, where my hands and feet were so dry that my skin was just peeling off. The worst side affect of all has been chemo brain. I can’t tell you which one of the three medications was the culprit, but today I fight with very bad short term memory loss and it hasn’t gone away. After 12 cycles the ct scan showed that the large tumor in my colon had shrunk a little bit and the nodule on my right lung stayed the same. The nodule on my liver also stayed the same. In January of this year the tumor began to block everything so I finally became a candidate for surgery. In March of this year the tumor was removed and I had a temporary ostomy. Ten weeks later the reversal was done. In June I had a ct scan where it showed two new nodules on my right lung and the nodule on my liver was the same.

So with no chemo for seven months it did spread in my lungs.I was really ready for a break and wanted to just relax and enjoy July and August. That didn’t happen and June 19th I started a new chemo and the drug is called Camptosar. I have one infusion per week for two weeks than one week off for a total of six cycles and then I go back in for a ct scan to see if it worked.

I have not had any issues with neuropathy since I stopped 7 months ago. There is a website called Medivizor and they will email you the latest clinical trials and medications and stuff. The information they email you will only be specific to your cancer.

I wish everyone well and hope we all become survivors of this horrible disease.