What made you drop Oxaliplatin?

[lovelife789]

I have been doing FOLFOX since Dx and during my last infusion I had a major allergic reaction. Strictly speaking, I have had 6 rounds of successful FOLFOX with no problem.

At my #7 shot, I switched to XELOX and my stomach wouldn't take Xeloda, I was vomitting like a fountain , so #7 I only had a big dosage of Oxi (with Xelox Oxi dosage is higher with 3 week interval) and stopped Xeloda on day 4. My Onc then said #7 doesn't count because I didn't complete 14 days of XELODA .

So I did my #7 again going back to the FOLFOX regimen, this is when I have had an anaphylactic reaction to Oxi. BP went down to 59/38, Oxygen level in my blood was low, throat tightened up, I felt like I wanted to vomit, hives all over from head to toe, they ended up suspending the infusion when I was 3/4 through .

A week after the reaction, blood test also showed all my blood counts were trashed . Platelets down to 58, WBC marginally pass only. The Dr almost didn't want to let me leave the building worrying about the risk of internal bleeding. But my Onc said if my blood test pass next week, he will want me to try again putting me on steroids the day before infusion, during and after. I'm a bit concerned because even if I can take Oxi next week (my #9 infusion of Oxi, #8 with FOLFOX) with proper blood count and no allergies, my blood count will not hold up for much longer as it was trashed completely and it will impact the timeliness of my treatments (instead of every two weeks, I may need to wait for a few weeks before my counts are up enough again).

I actually have had very little neuropathy from Oxi in previous infusions, but my blood count and allergies are what concern me.

I'm wondering if anybody has taken Oxi off their regimen and what made you make that decision? Any advice any experience sharing would be helpful and appreciated!

Thanks all!

[aqmdtran]

ONC took me off because neuropathy started to kicked in my tongue, fingers, and toes. But my scans and counts we're stable too so I think that's why he felt that it was okay to take me off of it.

[[Ana & Alex]]

Dear lovelife789,

I have dropped Oxi by my forth treatment after experiencing some major side effects and after reading about the results of the Idea trial.

You can read about my journey with oxi here:
viewtopic.php?f=1&t=58115

I had major neuropathy from day one until day 7-10. By my second infusion I had to be taken home in a wheelchair because I couldn't walk by myself. But that is not why I dropped Oxi.

I was having major nausea, my blood pressure was very very low, liver and blood cells were taking a really massive beating and my life quality was reduced to zero. I have been in the hospital every time after receiving Oxi and I spent the first 7 to 10 days after infusion in bed. Getting up was a real struggle and I felt like I was going to die at any moment.

After reading that for rectal cancer 4 weeks of Xelox are almost as effective as 8 weeks I decided to stop the Oxi and carry on with Xeloda only for the next three cycles.

I have my life back. I still feel tired and feel nauseated but it really manageable and I'm coming back to my old life. Next week I'm getting back to work and today I was at the university. So I'm really happy, despite all the side effects. I have one more cycle to go and then I'm done. Hopefully for life

I wish you all the best for your decision and for the next cycles that still await you.

Keep strong and live a day at a time,
Love,

Ana

[[Ana & Alex]]

One more thing:

If you take steroids and antihistamines for the allergic reaction it will get better. I had dexametason and Benadryl, and they worked wonders. After that I was on steroids for 4 days and I could walk on my own again.

If you worry about the blood counts delayed your treatment you could do erytropoetin order filgastrim shots bedore each cycle to keep red and white cells counts up.

Talk about it with your oncologist if you have the chance

[benben]

Hi,

I was dropped from OXI after treatment #7.
I, like you, only experienced mild neuropathy - but it was definitely getting worse.
My ONC actually said I had enough. I was ready to do treatment #8, but I suffered extremely low WBC count - neutrophils near zero during nadir.
I received numerous growth factor shots. They do not increase RBC - in fact number one side effect is reduced RBC. So my red blood cell counts were
beginning to be trashed as well as WBC. It's a delicate balance. My ONC was ok with the dropping of OXI - siting the recent ASCO report of 6 treatments being nearly as effective as 12.
Because of my age and work, he didn't want to give me permanent neuropathy. So last 3 treatments have been 5FU with leucovorin only as will the remaining 2 cycles be.

My WBC rebounded into normal range last week without the need for growth factor boosts. My RBC rebounded, but were slightly below normal. Platelets returned to normal volume, but still morphed a bit on the large side.

With the last severe reaction you experienced, I'd be discussing with your ONC what is to be done about it and if you really need to continue with the OXI.

best of luck.

[lovelife789]

If you take steroids and antihistamines for the allergic reaction it will get better. I had dexametason and Benadryl, and they worked wonders. After that I was on steroids for 4 days and I could walk on my own again.

If you worry about the blood counts delayed your treatment you could do erytropoetin order filgastrim shots bedore each cycle to keep red and white cells counts up.

Talk about it with your oncologist if you have the chance

This part is interesting! and thank YOU for sharing!
I will definitely ask my Onc and see if those shots can help to get my RBC and WBC up, AND whether it's worth all those medications (3-4 diff types) to just do one shot of Oxi.

My other Onc (I see two just to get a second opinion) said it's hard to say whether Oxi's power on increasing the chance of no recurrence by 5-10%, a lot of factors affect that chance: lifestyles, age, high or low risk of tumours.

I will speak to my attending Onc once again and see if he has a more comprehensive view of my treatments.

[lovelife789]

Because of my age and work, he didn't want to give me permanent neuropathy. So last 3 treatments have been 5FU with leucovorin only as will the remaining 2 cycles be.

Thanks Benben!!

Im happy you seem to have a very good Onc, there's always a question in my head: whether an Onc is treating an illness or treating a patient, a human-being. Sometimes some Onc treats the illness so aggressively that the illness is gone, but the side effects (I have seen a much longer list than neuropathy, some have kidney and severe heart issues) stayed forever.

My Dx is not easy as you can see from my signature and I guess that's why my Onc wants to be aggressive and gives me the best chance. Mets in my liver were severe, the biggest one at Dx was 9cm and I had 5 other in smaller sizes, Folfox almost killed them all and made tumours operable and as of now I'm NED according to pathology report. Therefore, Folfox did save my life for once, just don't know why suddenly both Oxi and Xeloda hate me after I'm NED.