question to phil in arizona

[meighan]

hi there, I read a previous post of yours about getting a red face and the itchys with oxciliplatin..........well my husband is on round 11 of folfox6 and round 10 was hell and he also had those symptoms around an hour into it they stopped gave him benedryl stalled him for an hour but were able to get the dose in just slower but then he had a fever that night and well as we all have had just not a good day.........Anyway it is round 11 they gave him benedryl and steroids prior to treatment and slowed it down to 3 hours instead of 2 and just 30 minutes into it the red face and itchy's. So they are stopping the oxciliplatin all together now, and he is discouraged. What happened to your treatment since the allergy???He only has one treatment left and i saw some were switched to folfori, MD is considering it. Will it even do anything for one treatment??? She states there is not alot of literture on this and we want to be aggressive but not at the cost of his overall health of course.......... know you went through this would like to know what you were offered and what you decided?? or anyone else out there been here would love some advise.......... just trying to get to the end of this and feel like we made the best decisions, hard to come this far and have this now........he is looking to me and we are looking to the MD but it seems like all just statistics how do you know you are making the right choice???? help i can't lose it now we have done so well....................

[Phil in Az]

So they are stopping the oxciliplatin all together now, and he is discouraged. What happened to your treatment since the allergy???..

Well when this happened to me, it was during round 8 out of 12 rounds. The way my onc explained it - he said that at this point, i've had 8 successful rounds w/ the oxi, however at this point the risks of continuing treatment w/ the oxi are pretty high. I run the risk of another allergic reaction, or even shock. (i guess i gave the nurses a pretty good scare that day) So my onc is recommending that i proceed w/ the remaining treatments w/o the oxi. I'm fine with this course of action. This past monday/tuesday was the first treatment w/o it and to be honest, it was nice not having the side effects i used to get.

When you boil it all down - while yes, getting the oxi for these remaining 3 rounds would be better in terms of treatment - at the same not getting it doesn't expose me to a reoccurance any more than if i were to get the oxi. Not at this point in my treatment. If this were to have happened on my first or second treatment, then i'm sure they would have found a suitable alternative.

The other factors that come into play are the severity and advancement of our cancers, he only has 1 treatment left right? Personally i wouldn't be too freaked out by this. I was told that this is not an uncommon thing to happen at this stage of treatment.

Hope that helps, Phil

[meighan]

Thanks for the reply, today is a new day and feeling much more calm then yesterday when it all happened. He is going forward this treatment with just the 5fu and leucovorin and feels much better without the side effects from oxciliplatin also. Last treatment is up in the air but the MD did explain there is no real benefit or not to continue as he has already got much more then most tolerate..........he has a CAT scan next wed the 25th and i think between that and yesterday our nerves are just a little shot.. just want to get to the end of this and be able to celebrate something. You sound like you are only a few from the finish line yourself??? We are playing with a trip to disney (not original i know but fun just the same) Hope the rest of your treatments are uneventful. You can ignore my other message was just a little desperate to know someone else who had this happen and not feel so alone.....plus i couldn't help but notice the similiarities your case had to my husbands......that old saying comfort in numbers i guess.........no one at the hospital had seen that reaction before, yours??? Well one more hurtle in this long road behind us lets hope.

[Guest]

Hi Meighan,

I too had an allergic reaction. Mine was on my 5th treatment. They stopped the treatment immediatley and told me that was the end for me. I was given a shot of benedryl and a steroid and sent home with a 7 day course of steroids.

For the next 6 weeks I was in what they called a cooling off period. Afterwards I went on to take Xeloda for 6 months. I have been cancer free for 2 years now.

Don't feel funny about freaking out about the reaction. We all want things to go smoothly and when they don't it seems to trigger all those emotions we are holding in. Fighting cancer is such a roller coaster ride. Hope the CAT scan comes back with nothing but good results.

Mary
Stage 3C Colon Cancer Survivor

[Phil in Az]

You sound like you are only a few from the finish line yourself???Hope the rest of your treatments are uneventful.

Me too!!! If all goes according to schedule, my last session will be the monday/tuesday after Thanksgiving. Yay!

You can ignore my other message was just a little desperate to know someone else who had this happen and not feel so alone....

Not at all!!! I believe that is one of the reasons this board is here for - to help out when someone here is scared out of their mind. It's good to hear the good news, at the same time it's good to be able to give comfort to someone like you and your husband who may need it. Lord knows i've been scared out of my mind more than once through this journey and if it were not for my support group, both on this board and in my life - i don't know what i would have done.

[Jeni61]

Just wondering as I read this, as a rectal cancer patient with surgery coming and chemo coming after ...

Does anyone out there finish all their Oxaliplatin ????

Jeni

[suzieh]

I finished all 12 treatments, neuropathy hit at about treatment 10. We had to reduce at treatment 6 due to weight loss ( more than 10%) and not intolerance. I received it through my port. I did not like the cold intolerance but of course that went away.
SuzieH

[Phil in Az]

Does anyone out there finish all their Oxaliplatin ????

Jeni

i wasn't aware that people didn't finish it.

[northern lights]

I finished my treatmens last week. On the 12 treatment I had an alergic reaction. They had to administer benedryl, stop the chemo for a bit and then start the infusion slower. I did manage to take it all in, but it was a little scary. I had a dose reduction after round 3 due to extremely low whiteblood cells.

I was told that it is normal to have a reduction at some point. The doc base the dosage on statistics, but everyone metabolises it differently. I was told it would not effect the outcome.

It is always nice and reassuing to know that you are not the only one out there.

Sharon