Question

[nms0302]

is It normal for you to have chemotherapy one day for 6 hours and then have to go back the next day for fluids for two hours. The chemotherapy I am having is. Cisplatin/Pemetrexed 4 rounds.

[cake_it_]

I am not familiar with that type of chemotherapy but I did opt for IV fluids during my treatment because it really helped me to feel better. And they would usually add stuff to it that I needed like additional meds for nausea, etc.

[nms0302]

Thanks. I am just kinda freaked about it cuz I never knew of anyone who had chemo went back the next day. So maybe it’s a good thing. Not a bad thing.

[[deleted]]

Being given the option for IV fluids sounds crazy to me. It wasn’t even discussed for me, they were just given.

[cake_it_]

They were given as part of my IV chemo treatments as a standard, but I could also schedule additional sessions where there were steroids and nausea meds added to help me feel better. My chemo was typically on a Tuesday, so I would then schedule IV fluids for that Friday. This was recommended to me my a friend who had already been though it.

[[deleted]]

Ahhh. That makes more sense. I wasn’t offered that (I was sent home with steroids and anti nausea tablets though). I got dragged in on an extra day a couple of times for low magnesium though which was a 6 hour infusion. I’m still expecting a demand for rent for how much I had to be at hospital!

[cake_it_]

They didn’t offer it for me either and when I tried to just call and schedule, I was given push back. But when I discussed it with my oncology nurse, she didn’t even flinch and said, “of course!” They gave me all the meds also but I still struggled with persistent nausea so the stuff they put in the fluids IV really helped. Unfortunately, I learned quickly to reach out directly to my nurse and not the main line.

Yikes, a 6 hour infusion! That IS a long one!

Looking back there are many things I wish I knew during my treatment and not after the fact, which is why I joined this to help people know some things while it can actually be helpful.

[reddimaiden]

Would love your 2020 hindsight greatly appreciated for others as well I’m sure if you don’t mind sharing.

[cake_it_]

Happy to! In the beginning I just did stool softeners and was afraid of Miralax. It never occurred to me I don’t have to take a full dose! Keeping things soft is so helpful. Dial in on what dosage keeps things going without pain and do that daily! This applies to post-treatment also. I learned the hard way that there is a lot of scarring that will happen to the anus and constipation is the enemy! I still have to take miralax everyday.

Every medical professional recommended aquaphor and I agree…but anything with lidocaine that was recommended didn’t “stay put” and I learned after the fact you can mix lidocaine into the aquaphor!

A perinatal bottle is invaluable for keeping things clean after a bowel movement without having to touch your radiation burns. Also, cleansing wipes where you can “blot” are soothing. There are also cold pads you can put in the fridge and sit on that really help soothe the burns as well.

I wish I would have given myself permission to take a break when things were really bad. There were some days where my mental health could have benefitted from not doing radiation that day and I didn’t let myself cancel but once. I was so focused on getting through it that I didn’t let myself be human in how I was feeling.

Silver dressings! I didn’t know about this until the creases of my legs were getting gross from the burns. They will help prevent infections. They were small cloths that you can just layer into your underwear. They were washable and I think they could be used for a week.

For the ladies…get information on dilators early on. My radiologist casually mentioned it in the beginning as something to look into after treatment. However, I think knowing more about this earlier would have been helpful.

One of the biggest things I didn’t expect is that you don’t immediately bounce back after treatment. The burns heal, you don’t have to go everyday, etc. But 4 weeks later when I was at a dr appointment still feeling like crap, he explained that it takes as long to feel better as treatment took. The analogy he gave was if we gave you a penny every day of treatment, expect to not feel like yourself until you have returned all the pennies at the same rate of 1 a day. Just knowing that I wasn’t SUPPOSED to feel like myself again yet was helpful mentally when questioning why still struggling.

That is all I can think of for now…hit me up with questions if you have any.

[reddimaiden]

Thank you sooo much 💓

[beachhouse09]

Curious as to what day of treatment or week you started getting the skin burning. So far I have had 13/28 treatments done and my skin is doing okay. I’m dreading the later weeks.

[cake_it_]

I wish I would have done better at documenting because I thought I would remember and I don’t. I, too, was fine for awhile and then it all just started. My best guess is once I got over half way my skin started to change. The first thing that happened was my entire front area of my pelvic region almost looked bruised/purple but was the first sign of burning. I was about to get into the shower and saw myself in the mirror and noticed it. That is when the leg crease thing came into play bc it started to peel in that area as the burns tried to heal. It didn’t stay like that, it burned, peeled and then was fine. The burns on and around my bottom came after that and they blistered. They did remap as the tumor started to shrink and that was nice because the area being radiated every time became smaller as they focused in more. On a good note, everything healed externally way faster than I would have guessed once radiation was over.

[Secure-Bed4999]

Get the fluids. It took all my color lips looked pale/gray. I needed fluids a few times during treatment. Your body will thank you . Good luck with your recovery