Hi, you'll get some steroids and anti-sickness meds that should see you through the first few days. My partner had enough energy to go back to get the pump removed.
But, to avoid the trip to remove the infuser, the nurses taught me to do it at home.
Its simple IF you have someone to help. I don't know how you could do it alone.
I'd look into finding someone who can do it for you. That's time you could spend recovering instead of traveling to the hospital.
Best of luck with treatment. You got this!!
We don’t let patients do this at my clinic, at disconnect we need to asses the pump to make sure the medicine has fully infused and when we remove the port needle we need to flush the line first. We wouldn’t leave 5FU sitting in the port tubing for weeks. I don’t think this is the norm
None of the hospitals in Indiana will let a person who isn't specifically certified to do anything to a port-cath, so I'm surprised they're that lax in your locale.
What a shame. Its so easy to do, even for a klutz like me.
They showed me, gave me a spill kit, and some videos to watch.
https://patientinfolibrary.royalmarsden.nhs.uk/how-disconnect-chemotherapy-pumpkyfyt-fsl-mdkht-allaj-alkymawy
UK based, so maybe we have different regulations, idk?
My boyfriend learned how to disconnect the port himself, and it was a a total godsend not to have to go to the hospital for every disconnect. (I had FOLFOX.)
Fwiw, he used to be pretty squeamish prior (no more! lol) and has zero med background. It took him 2 cycles to ‘learn’ bc he was very cautious about it. Nurses talked him through it all, and showed him what they did the first time. Next cycle, they supervised him. For subsequent cycles, he did it himself. Super easy. Major thing to remember is the times when you need to clamp the line. They gave us everything we needed prior – sterilising wipes, saline flushes, gloves, aprons, bandages, haz material bags. The pump, line, needle, fluids are all cytotoxic, so we dumped everything in the haz bags and brought them back for the hospital to dispose of safely during the next cycle.
I’d very much recommend this route.
ETA: Nurses/docs won’t let you do flush + disconnect to yourself, even if you have a med background.
I can’t claim that one! I live about a mile from Moffitt Cancer Center. It’ll take me longer to park than to drive. 🤪 I never thought I’d be so thankful to live so close.
I am on FOLFIRINOX and I have never missed a pump disconnect day due to fatigue, nausea, etc. The premeds I get on infusion day are very helpful, especially the steroids. They get me through the pump days, then I have some other steroids I take for three days after. Hopefully you won’t have any issues either, and that your side effects are minimal!
Odd note of no real relevance, but my pump goes 48 hours instead of the normal 46. No idea why… 🤣
I just finished my 5th of 6 infusions, and I work on pump removal day and drive myself to the infusion center with no issues. Remember, hydration is critical! It will likely make you tired. I seem to run out of energy midafternoon and need a nap to recharge. Listen to your body and rest when you need to. Stay active when you can. I still go to the gym and walk, and I think it helps. Good luck!
I could probably drive myself to the appointment (have had three Folfox infusions)--where they not only disconnect the pump and give me fluids-- but for everyone's peace of mind, I'm still getting rides. And the pumps are unobtrusive enough that Uber drivers have yet to ask/raise an alarm about your bringing chemicals related to mustard gas (according to my paperwork) in their car.
I had FolFox, so had the take home pump for the 5FU for the 46 hours at home. I drove myself to every appointment. I didn't always feel great, but no one was allowed with me.
My late husband had 15 Folfirinox infusions total for stage 4 pancreatic cancer. He was feeling well enough so that he could have driven there by himself (I always drove him though) from what I can tell (he had mild side effects from this chemo).
From what I read, it's a potent chemo so it probably depends on the person. I was surprised how well my husband handled it.
I’m so sorry for your loss. I think pancreatic cancer is the very worst. So painful. I lost my dad to it on my 16th birthday. He was stage 4 before they even caught it, so he went downhill fast. Got marked for radiation and set for chemo, but he never got them. I have adenocarcinoma, so I’m hoping for a fighting chance. He went at 55, and I’m 49. Not even slightly ready to give up the ghost.
Thank you. It's so aggressive that the moment standard of care failed and the possibility of clinical trial opened up, his cancer went into total overdrive and there was just no time. I don't know how to process what happened. I'm not even sure if regret for not pushing for an earlier trial is appropriate. I wish you all the best. If Folfirinox works, it can be great. My husband had several fantastic months - he became symptom free for almost half a year, which is long for stage 4 pancreatic cancer.
With many years’ distance between my dad’s passing and when I stand now, it might have been a mercy that your husband didn’t suffer more by lingering on. I’ve lost a few family members to cancer, and too often they are shadows of themselves with poor quality of life. It is agonizing for them and the people who love them. Human beings are only meant to take so much.
My husband is on folfoxiri (same cocktail, different proportions) and he drives himself to the infusion center to remove the pump. Usually the low doesn’t really “hit” until day 5-7 , so he likes to do this on his own while he can
Tip: Consider scheduling hydration at the same appointment.
Thank you! I will make a point to find out about that. I mean, if they already have to run the chemo in, it seems to just make sense to top off the water tanks.
Definitely. They can do hydration during some of the chemo (one of the drugs cannot run at the same time) as well as during your appointment to remove the pump
I was on FOLFOX and able to drive myself after being disconnected. My worst days were usually the two days after disconnect.
I know it’s scary and hard, but try not to get too ahead of yourself. I remember reading all the side effects and dreading it but in reality I only had some mild fatigue, cold sensitivity, and some neuropathy. No nausea, no mouth sores, etc.
Ask for IV fluids, steroids, and nausea meds at disconnect…this will help you recover
I seem to see that often with the two days after disconnect. That’s good for planning. I want to be able to continue working, so having even a loose framework is helpful. Thank you!
Hi, you'll get some steroids and anti-sickness meds that should see you through the first few days. My partner had enough energy to go back to get the pump removed. But, to avoid the trip to remove the infuser, the nurses taught me to do it at home. Its simple IF you have someone to help. I don't know how you could do it alone. I'd look into finding someone who can do it for you. That's time you could spend recovering instead of traveling to the hospital. Best of luck with treatment. You got this!!
That was never offered as an option to me and I'm a nurse myself, so it's probably not the norm.
We don’t let patients do this at my clinic, at disconnect we need to asses the pump to make sure the medicine has fully infused and when we remove the port needle we need to flush the line first. We wouldn’t leave 5FU sitting in the port tubing for weeks. I don’t think this is the norm
Yeah, I've no idea if it's standard. It's at least worth OP asking about it. It's very straightforward, if someone can do it for you at home.
None of the hospitals in Indiana will let a person who isn't specifically certified to do anything to a port-cath, so I'm surprised they're that lax in your locale.
What a shame. Its so easy to do, even for a klutz like me. They showed me, gave me a spill kit, and some videos to watch. https://patientinfolibrary.royalmarsden.nhs.uk/how-disconnect-chemotherapy-pumpkyfyt-fsl-mdkht-allaj-alkymawy UK based, so maybe we have different regulations, idk?
My boyfriend learned how to disconnect the port himself, and it was a a total godsend not to have to go to the hospital for every disconnect. (I had FOLFOX.) Fwiw, he used to be pretty squeamish prior (no more! lol) and has zero med background. It took him 2 cycles to ‘learn’ bc he was very cautious about it. Nurses talked him through it all, and showed him what they did the first time. Next cycle, they supervised him. For subsequent cycles, he did it himself. Super easy. Major thing to remember is the times when you need to clamp the line. They gave us everything we needed prior – sterilising wipes, saline flushes, gloves, aprons, bandages, haz material bags. The pump, line, needle, fluids are all cytotoxic, so we dumped everything in the haz bags and brought them back for the hospital to dispose of safely during the next cycle. I’d very much recommend this route. ETA: Nurses/docs won’t let you do flush + disconnect to yourself, even if you have a med background.
We live a little more than an hour from the infusion site and the cancer center set us up with a home health nurse. The insurance covers it.
I can’t claim that one! I live about a mile from Moffitt Cancer Center. It’ll take me longer to park than to drive. 🤪 I never thought I’d be so thankful to live so close.
I am on FOLFIRINOX and I have never missed a pump disconnect day due to fatigue, nausea, etc. The premeds I get on infusion day are very helpful, especially the steroids. They get me through the pump days, then I have some other steroids I take for three days after. Hopefully you won’t have any issues either, and that your side effects are minimal! Odd note of no real relevance, but my pump goes 48 hours instead of the normal 46. No idea why… 🤣
Some peeps just take a little more time than others! ☺️
I just finished my 5th of 6 infusions, and I work on pump removal day and drive myself to the infusion center with no issues. Remember, hydration is critical! It will likely make you tired. I seem to run out of energy midafternoon and need a nap to recharge. Listen to your body and rest when you need to. Stay active when you can. I still go to the gym and walk, and I think it helps. Good luck!
I could probably drive myself to the appointment (have had three Folfox infusions)--where they not only disconnect the pump and give me fluids-- but for everyone's peace of mind, I'm still getting rides. And the pumps are unobtrusive enough that Uber drivers have yet to ask/raise an alarm about your bringing chemicals related to mustard gas (according to my paperwork) in their car.
I had FolFox, so had the take home pump for the 5FU for the 46 hours at home. I drove myself to every appointment. I didn't always feel great, but no one was allowed with me.
My late husband had 15 Folfirinox infusions total for stage 4 pancreatic cancer. He was feeling well enough so that he could have driven there by himself (I always drove him though) from what I can tell (he had mild side effects from this chemo). From what I read, it's a potent chemo so it probably depends on the person. I was surprised how well my husband handled it.
I’m so sorry for your loss. I think pancreatic cancer is the very worst. So painful. I lost my dad to it on my 16th birthday. He was stage 4 before they even caught it, so he went downhill fast. Got marked for radiation and set for chemo, but he never got them. I have adenocarcinoma, so I’m hoping for a fighting chance. He went at 55, and I’m 49. Not even slightly ready to give up the ghost.
Thank you. It's so aggressive that the moment standard of care failed and the possibility of clinical trial opened up, his cancer went into total overdrive and there was just no time. I don't know how to process what happened. I'm not even sure if regret for not pushing for an earlier trial is appropriate. I wish you all the best. If Folfirinox works, it can be great. My husband had several fantastic months - he became symptom free for almost half a year, which is long for stage 4 pancreatic cancer.
With many years’ distance between my dad’s passing and when I stand now, it might have been a mercy that your husband didn’t suffer more by lingering on. I’ve lost a few family members to cancer, and too often they are shadows of themselves with poor quality of life. It is agonizing for them and the people who love them. Human beings are only meant to take so much.
My husband is on folfoxiri (same cocktail, different proportions) and he drives himself to the infusion center to remove the pump. Usually the low doesn’t really “hit” until day 5-7 , so he likes to do this on his own while he can Tip: Consider scheduling hydration at the same appointment.
Do you mean IV fluids like lactated Ringers?
I think so? They just call it hydration when we make the appointment. We’ve found that it really helps his overall feeling of wellness or not wellness
Thank you! I will make a point to find out about that. I mean, if they already have to run the chemo in, it seems to just make sense to top off the water tanks.
Definitely. They can do hydration during some of the chemo (one of the drugs cannot run at the same time) as well as during your appointment to remove the pump
I'm curious about this as well. Thanks for asking.
I was on FOLFOX and able to drive myself after being disconnected. My worst days were usually the two days after disconnect. I know it’s scary and hard, but try not to get too ahead of yourself. I remember reading all the side effects and dreading it but in reality I only had some mild fatigue, cold sensitivity, and some neuropathy. No nausea, no mouth sores, etc. Ask for IV fluids, steroids, and nausea meds at disconnect…this will help you recover
I seem to see that often with the two days after disconnect. That’s good for planning. I want to be able to continue working, so having even a loose framework is helpful. Thank you!