Should I switch to a different chemo provider, or is this normal?
Hi everyone! I'm brand new here, just had my first Taxol treatment yesterday. Reading through these message boards it seems like there's a lot of information my chemo center left out, I'm honestly thinking of switching to a different provider but wanted to ask here if maybe I'm overreacting?
Before my first treatment, I had a session with an NP to go over everything. It was scheduled for an hour but were were there for over two, she was really nice but scattered and seemed disorganized. Here are some of the issues, please let me know if I'm rightly concerned or not.
I kept asking about how common different side effects are with Taxol, and every time she just said that everyone is different. I know that, but some side effects are much more common than others and she wouldn't tell me anything about which ones were most likely to happen.
Reading these message boards, it looks like neuropathy is a very common side effect and that wasn't even mentioned. It seems like there are ways to prevent it or make it less severe, none of that was mentioned at all.
No info mentioned on wearing compression socks or gloves. I asked about a cold cap and she was very dismissive. Same with icing down my hands or feet.
No mention of taking L-glutamine or any B vitamins. Also, I was there with my partner (heterosexual couple) and she completely skipped over any info about intimacy during chemo. She was looking through her book and I heard her say "oh, this one is about intimacy" and then she turned the page! I had to ask her some specific questions, and she even changed the subject and I had to ask again.
Would appreciate any input!!
As far as my treatment, I had the first one yesterday and no side effects yet but I know they are coming :)
Thanks everyone!
Comments
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Hi @tjstyphon
Congratulations on getting through your first treatment!
I'm really sorry to hear that you didn't get as much information as you needed. Unfortunately, I think this is too common. Changing to another chemo center at this point wouldn't necessarily guarantee that you get better information. I would say stick with where you are.
I found that reading these boards provided the best information as it was actual people's experiences. I did ice my hands and feet during Taxol. You could still do that if you like. I bought my ice gloves and socks on Amazon. Search Suzzipad and you will see the ones I bought, though there are now also cheaper brands, I see.
I did do cold capping, but I got NO information from my center either. I saw on the PAXMAN website that my center had the machines. I think in the U.S. it is often not mentioned as it usually is not covered by insurance and it's expensive. I was the only one I've ever seen using the machines at my center even now when I go in for Zometa infusions. Using a cold cap is really an on-your-own thing at my center. You have to do it yourself, other than them providing the machine. I was fortunate to have DH available to come along and assist me. You have to pay PAXMAN for the 'keys' to use it and it does cause a delay starting chemo, as you have to get the cap from them. It would be nice if the U.S. started covering it in insurance policies as they do in the U.K. and then it would more likely be encouraged. Most people aren't able to save much more than 50% of their hair.
I haven't heard anything about L-glutamine or B vitamins, so I can't comment on that. I didn't do any of that.
My chemo center is tied to my M.O. clinic. I feel like I get good care there. However, as with any clinic, there are some providers I like better than others. I had one N.P. that I won't allow them to schedule me with as I found her not very knowledgeable. It sounds like you might want to put the N.P. you saw on that list for you. On the other hand, I have an N.P. that I like a lot and always request her when I am scheduling. If you don't find providers that you are comfortable with, at some point, you might want to move to another clinic. However, it would be best IMO at this point, to finish your chemo where you are at, as you don't want to delay that.
Good luck to you and Take Care.
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congrats on getting treatment number 1 done! I found it a huge relief to have 1st one done.
sorry to hear that they did not do a good job of preparing you for what to expect as far as side effects.
hopefully they gave you papers that told you what to expect and that laid out the common side effects & uncommon side effects and side effects to notify your provider if you have. If they did not give you that, request it.
At your next treatment, talk to your chemo nurse about common side effects, etc. they are really good sources of info, because they are dealing with patients directly. Hopefully they will give you more information & answer all of your questions.I definitely found a lot more info on this site as far as what to really expect & how to minimize side effects. (And this was true through my chemo, surgery, radiation and meds)
Make sure to talk to your doctor before starting any vitamins or supplements. Some things can interfere with the effectiveness of your chemo or bloodwork results.
I made sure to be well hydrated the day before, day of and day after chemo and got out for a walk every day. I felt like both of these helped minimize my side effects. The walk was a huge help with reducing stress.
take care. Hope you have little to no side effects.2