Lessons from my first Oxilplatin infusion
Lessons from my first Oxaliplatin infusion.
This forum provided valuable insight unavailable elsewhere to help prepare for my first round of Oxaliplatin. I recognize that others have far more experience with this issue than I, but I thought I would summarize things I learned for others like me who search the forum in the future. Please add your thoughts and tips.
1. Review this forum for tips, side effects and problems you may encounter. I reviewed numerous information sources to prepare for my first Oxaliplatin infusion, including grilling my oncologist, but nothing prepared me as well as this forum. The people who post here have real-world knowledge of these issues, as opposed to others with academic knowledge or agendas to pursue. No one else warned me about the pain of washing my hands with cool tap water, tossing a cold TV dinner across the room, feeling that consuming unheated water was drinking glass shards, or many of the other symptoms I experienced. But because I read the postings I was better prepared. Thank you all.
2. Request a reduced dose at your first infusion. Thanks to those who mentioned this possibility. I had an 80% infusion and still suffered serious side effects. I cannot imagine how much worse it could have been with a 100% dosage. Start slow and see how it goes is my recommendation.
3. Get the infusion in your left or non-dominant arm. I had pain in my arm upon starting the infusion which later felt like my arm had been breaded in glass shards and given a vigorous massage. The nurses initially wanted to put the needle in my right arm which was more convenient for them. Thankfully I insisted they do it on the left, which allowed me to have a functional dominant arm after the infusion.
4. Do not allow a trainee to insert the needle. This one is from the school of hard knocks. I am being treated at a teaching hospital. I allowed a trainee to insert the needle, which seemed to me to be about 4" long and 1/16 of an inch wide. She caused a lot of pain and bruising. I do not know if a more experienced person would have done a better job, but I wish I had insisted that the experienced nurse insert the needle.
5. Plan for the process to take all day. My oncologist said the infusion would take one hour, so I planned accordingly. In fact, the infusion suite was like a bus station, it took me 45 minutes to get a chair. Once I was in the chair, they took 2.5 hours to prepare the drugs. The pre-infusion drugs took 30 minutes, the infusion took 2 hours and the post-infusion dextrose and clean up took another 30 minutes. I got home 9 hours after I left. Hopefully your procedure will be much more efficient, but you should be prepared for the worst.
6. Get your anti-nausea drugs in advance. Thanks again to posters on this forum who alerted me to this issue. My oncologist did not mention anti-nausea drugs and only provided me with a script when I called his nurse. I had horrible nausea and having drugs in my pocket saved me the embarrassment of puking in a grocery store when nausea overwhelmed me. Get the prescription and the actual medication in advance.
7. Have gloves ready to go. Thanks again to the forum. I had real problems with sensitivity to the cold. Summer is coming and gloves are hard to find in the store. Thankfully, I had gloves sitting on the top of the refrigerator, all washed up and ready to wear when I got back from the infusion. Boy, did I need them.
8. Allow for down-time. My strategy was to hope for the best and prepare for the worst. Fortunately, I had a clear schedule and lots of time to deal with the side effects. If you have the flexibility, it is good to have a week available to evaluate how the chemotherapy affects you personally.
9. For people with hairy arms--shave the area of the arm where they will do the infusion, it will avoid the pain of tearing off the adhesive along with your arm hair.
Thanks all for your tips and assistance. This was my first and perhaps last Oxaliplatin infusion. I will post more on that as I get time to do some research.
Comments
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Port
Ask if you can get a port for your chemo infusions. How I would have hated to have to get stuck in a vein every time I got chemo.
Your expreinces are important to all who are searching for help as they start their journey. Great post!
I am sorry you were hit hard with the cold sensitivity and nausea. I can only hope things don't get worse, but..... Well, you already seem to know the score 'hope for the best while preparing for the worst'.
Good luck as you move forward on this journey.
TRU
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One Down
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.
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Another vote for a port
I had a port, but even so, the chemo mucked up my veins just passing through them. I suffered from severe pain any time I had to have an IV or blood draw that couldn't be done through my port - not pain from being stuck, but actual pain from having something in my vein. I learned that for months after chemo, if I was having a blood draw or anything done with a vein to prep the area with a lidocaine patch so that I could tolerate it. They couldn't even use IV sedation on me when my port was removed - the pain from the presence of the IV had me in tears. (Port removal with just local anesthetic was fine, but the dr had wanted me to have an IV in place. It was too painful; they had to remove it.)
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I have discomfort with my
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.
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I had problems with my port..
I had problems with my port on my third infusion the Oxaliplatin escaped into my neck. It was very painful and scary.
It was removed and a new port installed on the other side.
I got a blood clot around my juggler vein. I did the 80 day course of Xyrolta. This nasty medicine caused bleeding (I would not recommend it).
If you feel uncomfortable talk to your doctor about it.
Good Luck
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No problem with my port
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.
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The port definitely helps
The port definitely helps though they had to strip the end after installation by running a probe/tool from a crotch area vein to clear the end. This post reminded me that nine years ago I was just finished with the chemo rounds and going to Vegas to celebrate getting through it all. Be sure and do something nice for yourselves after dealing with all the hassles.............................................Dave
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Husband starting his first infusion June 1st.
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
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Cold sensitive
will the cold sensitivity begin right away?
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DependsTeresa0287 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
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Cold sensitivity
Mine hit as soon as I got home and went to wash my hands with regular tap water. I am glad I had read other people's posts and was not too surprised. But the hard part was not being able to drink anything that was not heated. It lasted for about two weeks after the first infusion and I have not had a follow-up one.
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Mine was gradual and got
Mine was gradual and got worse over time. I hated not being able to drink something even cool. It was winter but I didn't always want something hot to drink. I really cannot describe the odd feeling in the throat when you drink something cold. It's really unpleasant but not exactly painful. Some people have said it's like swallowing glass shards but its not painful like that, it's more of the feeling of swallowing something crunchy.
I'm probably just wimpy but my plan was to stop the oxy chemo without doing tha last few treatments. Particularly after reading that in Europe the protocal is 6 treatments, not ten or twelve. It was just too nasty and it was winter so it was awful. I suspect doing it in the summer would be not so bad. I found that I was getting really stressed from touching things that I didn't expect to get 'shocked' by but getting bit anyway. I'd be walking around the house saying things to myself like 'seriously?' 'are you kidding me?' or 's**t!' when I did something like just turn a light switch on or off and getting the reaction.
I hope it does well for you!
Jan
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Mine has been gradual as well
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?
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Steroidsgsmith53 said:Mine has been gradual as well
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?
Yes, it is awful. I was told it was due to the steroid part of the infusion.
Tru
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Mine Was The Build Up TypeTeresa0287 said:Cold sensitive
will the cold sensitivity begin right away?
Took a few treatments (but I did not have the Oxiliplatin the first treatment)
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I have had good luck with my port as well
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
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