Lessons from my first Oxilplatin infusion

I remember marking down all 12 chemo sessions on the calander and it seemed so long.  But it will be done before you know it.  Great post.  

What Tru said (I say that a lot when she gets to a thread first )  - look into getting a port.  It is a minor procudure  (I was not even knocked out, just in twilight and cracking jokes, until I was told I had to be quiet at certain points.  Another tip:  I complied, never argue with someone who has a scapel near your chest ) and it makes the needles and chemo easier.  Everyone is different, but from reading here the port makes things a ton easier.

My oncologist started me off  without Oxaliplatin for the entire first treatment  to see if I have any reaction to the other drugs.  I didn't.  Also my oncologist did not plan for me to have it in all of the sessions, he goes with a maxiumum of 10 sessions.  Like most things, each part of what is done increases percentages a bit.  For instance, a daily aspirin has been shown to reduce the reoccurance by a few percentage points.  Same for exercise/moving. He feesl that after 10 sessions with Oxaliplatin that the benefits are outweighed by possible permanent neuropathy.   So do not let it get you down if you cannot do all sesssions with it.  It is not an all or nothing situation.  

I was shut down after 8 sessions with it as my neuropathy spiked.  Prior to the 8th session (that had Oxaliplatin )  I had some neuropathy, but it would resolve before the next treatment  Then it didn't.  He explained to me that it is not linear in progression, so that is why he stopped.  It is more going over a cliff.  There are places outside the U.S. which only give 6 treatments of FOLFOX and I was told when I was going through chemo that the U.S. was working on studies about going to 6 treatments.  So, in other words, try not to worry too much about the Oxaliplatin situation.  Speak to your oncologist to get percentages and approaches based on how you handled the first session.  I am now almost two years out from the end of my chemo (only 8 seesions with the Oxaliplatin) -   I had a met to the lung by the time my cancer was found (and it reduced during chemo, then grew), but otherwise no more CRC.  All the other suspect spots have not changed.  And I had heavy lymph node involvement.  So again, try not to worry too much.  

One down, eleven to go.  Before you know it, you will be done with chemo.  Hang in there.  You got this.

I have discomfort with my port just about every hour or so. Some patients may have none and have not even bothered by it. But of course everyone's different in every medications and so on. Mine left a massive bruise by the port along the side of my ribs!!  The nurse noticed it when she took the pump out after 46 hours. Now I am dealing with it, and a nervous wreck on what's going to happen next.

I have had a port since January. There was some swelling initially,  but after two weeks you could hardly see it. I have no pain when it is accessed. I had numbing cream but I don't even bother to use it. No visible bruising. I highly recommend it. 

Thanks so much for your information.  My husband starts soon and although he has not researched much about it, I fill him in on what I find out.  He is afraid he will read all bad information and does not want to go in expecting the worst but for me I prefer to have all the knowledge I can. 

Thanks again and look forward to the rest of your story. 

Betula

Teresa0287 said:

Cold sensitive

will the cold sensitivity begin right away?

It really depends on the person, but it hit me right after the first treatment. 

Good luck!

Tru

Mine was almost immediate, but tollerable, because I was prepared for it.

It was gradually worse with each cycle, but more of an annoyance. Since I missed the last two weeks for cycle 5, the neurapthy was complely gone. Today was cycle 5 and the onc reduced the Oxi dosage a bit. It's back, but again, very tollerable. I find myself thinking, oh wow, when it happens. We'll see what happens going forward. I aggree that it's agravating to not be able to drink anything cold for a while. Even room temperature has some of the effect. Only hot things have no affect.

What I'm finding is that I can't sleep much the night after the infusion. Anyone have that happen?

Teresa0287 said:

Cold sensitive

will the cold sensitivity begin right away?

Took a few treatments (but I did not have the Oxiliplatin the first treatment)

The steroids can keep you awake. 

Great post!

I did my 12 rounds of Folfox (which has oxy in it) ending in Dec 2016. My port is located in my left arm (non dominant) and generally it has behaved itself well. I had one blood clot in the line during the course of my treatment, but they were able to clear that out in the hospital without too much trouble.

My neuropathy was a slow onset that got gradually worse with each treatment. I found the worst cold sensitivity was in my hands and mouth. Room temperature water was like drinking a slurpy to me. I found that mine continued to get worse for a month or two after I finished my course, but now that it is several months past my completion date, the neuropathy has been getting better. It certainly isn't gone, but it is a lot better than it was. I also started my treatment in the summer so gloves weren't a big seller in the stores. I picked up a pair of construction gloves with the rubberized palms. Those worked really well and you can get them at the home depot type stores all year round. Good grip for picking up things with numb fingers.

The other place I experienced the numbness was in my feet. It affected my balance quite a bit more than I expected, especially for things like taking a shower. I had to keep a hand on the wall when I had my eyes shut rinsing out my hair to make sure I didn't fall over.

One thing I did not expect was the amount of joint pain I have had since my chemo. Feels like bad arthritis or something, mostly in my hands. I don't know if anyone else on here has had that experience or not, but that is something I have had. Again, I don't know for sure if that was from the Oxy or some other component of the Folfox, but it is at least something worth asking about.

I didn't care for the steroids they gave me for nausea, I have read there can be an insulin reaction with that and I have been pretty anal about anything that affects the sugar in my blood stream since I learned about how agressively cancer consumes sugar. Fortunately my family Dr gave me a prescription for cannabis, which I found to be really effective for nausea. (I never thought that would be something I would try at 49, but cancer has me doing a lot of things I never thought I could do)

I had a fever with every single treatment. My treatment involved an IV portion in the cancer center, followed by a 48hr take home infusion bottle. I don't know which one caused the fever, but I could typically count on at least one day where it was at 38.8 fairly consistently. I have been more fortunate than some in that I have been able to go to work while I getting treated. With that said, I still had to take off the 3 days during each treatment for sure. My chemo infusion started on Wed and I got the infusion bottle taken off on Friday morning. Wed was most of the day in the cancer center getting the IV. Thursday was my bad day where I spent all day in bed sleeping with my fever and the infusion bag to keep me company. (and my dog Ellie of course) Friday through Sunday were rest and recovery days. I was usually OK for work by Monday, but expect to be tired a <b>LOT</b>. Even months later I'm still more tired than I'm used to being.

It gets better though! There are a lot of days where the treatment sucks, but once you come out the other side, it gets better. It may be one of the hardest things you do, but try to stay positive and if you can, find people you can laugh with. They are what helped me the most anyway. I know this sounds crazy, but the other thing that helped me was just not thinking about it. Worrying about the treatment was worse than the treatment itself for me. Working and doing normal things helped tremendously. Sure, I have stage 4 cancer, but that isn't what I think about. Thinking about that doesn't bring me happiness, so I focus on things that do, and that has made my treatment and recovery a lot more easy to get through.

Thomas