Elastomeric pump

11Balboa

Hello everyone...I wish you all a great day. My boyfriend will be having 5fu delivered through an elastomeric pump for up to five days...takes it home after he gets his other drugs the first day of treatment. He will have a port put in soon. Has anyone had this pump , mainly any problems sleeping with the pump? I'm sure he will have more instructions at the infusion center...just seeing any tips or advice here, thanks!

LitlCJdoll

Several answers....

Hello,

 

I didn't get the 5 FU via a pump but I do know that several people here have received it by that method and when they see this post they will answer you. 

I am glad he is getting started on the treatments. I'm sure you are both a little apprehensive, about side effects  and disrupting life but it's what we all have to go through on the road to defeating our cancer.

Just know we are here and we know how hard it gets.  Feel free to bounce questions off us---- and look to his Oncology Team, First, for all questions, and problems. They will have answers specific to him and his case.

Stay tuned for the people here with their experiences in that specific treatment with 5 FU. 

Best !!

Crystal

wbcgaruss

Hey I'm The Same As

LitlCJdoll I did not have the 5fu by the take-home pump but I have seen people at the cancer center where I was getting treatment

with the pumps. Many use them so they must not be too hard to deal with and they let you go home.

I am sure you will be OK with it-Take Care-God Bless-Russ

 

Logan51

Yep

I had the take home for both my 5-FU & Cisplatin. They'll give you a pouch to put the pump and bag of 5-FU in. They should explain everything to you. Remember there was a shut-off switch that I accidentally enacted on one of them and had to make a phone call to the number they had given me. Got on Monday AM, and bag was empty Friday AM before I went in, so I shut off one of them. Bit of a hassle in that you have to be careful, but in the big picture it is not a big deal. Remember being careful when I went to bed, but had no incidents with that. Remember the number to call was 24/7, and hope you'll have the same in case the pump quits on you, or any other issue happens.

I didn't know that was how I would be getting my Chemo until the day they hooked me up to my port. I just made adjustments, slowed down for the 4 days. Drove myself to and from Radiation sessions, and went to a couple stores looking for a pouch for 2 pumps/bags- Chemo gal had no clue, because they only had pouches for 1 pump and bag, and ended-up spending $5 @ Walgreen's to get a kids fibre-like lunch pouch that worked. 

LitlCJdoll

See?!! That was a great answer.

And there should be a couple more, who've had the same experience.

Our Logan has Superpowers and has protection from the Highest Levels in the Universe --- We need his strong Vibes and the wisdom he has attained from many Hard- Fought Battles.....  Thank you, Logan !!  ?⚡?⚡⚡

LitlCJdoll ??

 

11Balboa

LitlCJdoll said:

Several answers....

Hello,

 

I didn't get the 5 FU via a pump but I do know that several people here have received it by that method and when they see this post they will answer you. 

I am glad he is getting started on the treatments. I'm sure you are both a little apprehensive, about side effects  and disrupting life but it's what we all have to go through on the road to defeating our cancer.

Just know we are here and we know how hard it gets.  Feel free to bounce questions off us---- and look to his Oncology Team, First, for all questions, and problems. They will have answers specific to him and his case.

Stay tuned for the people here with their experiences in that specific treatment with 5 FU. 

Best !!

Crystal

Thanks,

Thank you for your response and support..this is a wonderful group of people. My boyfriend has actually been on chemo three years ago , with radiation, and now is having his second recurrence of his cancer( esthesioneuroblastoma). What is different this time is the drugs they are using and the way it will be delivered, thus the take home pump. No more radiation as he reached his limit the first time around. He's had surgery three times now and the drs say chemo is his only path now. we had hoped the surgery would get clean margins, but that didn't happen. He's been told the five year survival rate for this very rare cancer is 5%..... he's three years now and we are hoping he is going to be that 5%. I have followed your posts and truly admire your strength, it does bring hope and encouragement to others..... Russ is cool too!

11Balboa

Logan51 said:

Yep

I had the take home for both my 5-FU & Cisplatin. They'll give you a pouch to put the pump and bag of 5-FU in. They should explain everything to you. Remember there was a shut-off switch that I accidentally enacted on one of them and had to make a phone call to the number they had given me. Got on Monday AM, and bag was empty Friday AM before I went in, so I shut off one of them. Bit of a hassle in that you have to be careful, but in the big picture it is not a big deal. Remember being careful when I went to bed, but had no incidents with that. Remember the number to call was 24/7, and hope you'll have the same in case the pump quits on you, or any other issue happens.

I didn't know that was how I would be getting my Chemo until the day they hooked me up to my port. I just made adjustments, slowed down for the 4 days. Drove myself to and from Radiation sessions, and went to a couple stores looking for a pouch for 2 pumps/bags- Chemo gal had no clue, because they only had pouches for 1 pump and bag, and ended-up spending $5 @ Walgreen's to get a kids fibre-like lunch pouch that worked. 

Thank you

Hi, this is great info, thank you. My boyfriend has been on chemo before,just not with this pump. Did you just set the pump alongside you when sleeping...it didn't roll off ever? I've read where you shouldn't put it under the blankets. Was the switch you mention turning off a clamp or something else? I am thinking of sewing a pocket on a tshirt so he can set the pump there when he gets up to the bathroom,hands free ,lol!

Logan51

switch

was on the pump. been over 12 years, so memory isn't the best. recall there's a long tubing between bag and port, and yes- kept the bag on the blankets. only will be for 4 days, and I just kept my 2 pumps/2 bags in the lunch bucket thingie I mentioned. 

as for bathing: you don't need to shower. just clean-up with a wash rag and soap. washed my hair at a sink with a handled kitchen pan for the water. know of others who complained about not being able to shower, which is baloney in the big picture when you're talking only a couple months in a fight with C.

sorry to hear he's maxed-out on the Rads. truly am.

LitlCJdoll

11Balboa said:

Thanks,

Thank you for your response and support..this is a wonderful group of people. My boyfriend has actually been on chemo three years ago , with radiation, and now is having his second recurrence of his cancer( esthesioneuroblastoma). What is different this time is the drugs they are using and the way it will be delivered, thus the take home pump. No more radiation as he reached his limit the first time around. He's had surgery three times now and the drs say chemo is his only path now. we had hoped the surgery would get clean margins, but that didn't happen. He's been told the five year survival rate for this very rare cancer is 5%..... he's three years now and we are hoping he is going to be that 5%. I have followed your posts and truly admire your strength, it does bring hope and encouragement to others..... Russ is cool too!

Thank you,

Thank you!!  I

Your sweet comments made my day!! I needed that nice note, today.

It very tragic that he is going through this, yet again and trying to achieve a successful treatment this time. 

I know exactly what it's like, for the cancer to be advancing and you have to put your hopes on the next treatment they prescribe, or the clinical trial-- and you are hoping with all your might for a hreakthrough.  Or at least, in our case because Randal's had already Metastacized widely--- just hoping for slowing down the growth and spread.  Just a little more time please ...

He is lucky to have you, being very involved in his care and so knowledgeable about it.   You are a very strong team together!!

I hope he gets through the 5 FU chemo relatively well, but I know it's a harsh treatment.  Let's hope it does the job it's supposed to!

Please keep us up to date and if you ever  want to " talk" , feel free to Private Message me anytime.  Your story/ his story weighs heavy on my heart.

 

Crystal

Logan51

MG knows more than I do

I did not have an Elastomeric pump. Googled the term to see what the "ball" was about, and realized it's a different type of pump than the 2 I had for 96 hours. I went thru tx back in early-2009, and my two pumps were I-pad sized battery powered pumps and literal IV-type bags you could see the liquid in. So, MG would be the one to advise you best.

motorcycleguy

11Balboa,

The pump wasn't a huge deal. The one I had was a compressible ball, about the size of a tennis ball. I wore it in a belt pocket (fanny pack?), and it slowly collapsed, and infused the 5FU.

You get it attached, keep it on for 5-7 days, and go back and get it removed. I repeated the process 3 times, myself. You just set it to one side in the shower. 

I'm not saying it was a lot of fun, but the infusion ball itself, was not as difficult as it may sound, at first.

The 5FU though, for me was challenging. I found myself VERY tired at times. Make sure he gets the rest he will probably need. Also, please make sure your boyfriend keeps up on NUTRITION!! If he can still eat, that's fantastic - or even if he can drink high nutritional (caloric) smoothies - it would be a big help!

I wish you and your boyfriend the best possible outcome. I'm very GLAD he has you to help him; he will always appreciate it!!

MG

11Balboa

Logan51 said:

MG knows more than I do

I did not have an Elastomeric pump. Googled the term to see what the "ball" was about, and realized it's a different type of pump than the 2 I had for 96 hours. I went thru tx back in early-2009, and my two pumps were I-pad sized battery powered pumps and literal IV-type bags you could see the liquid in. So, MG would be the one to advise you best.

Thanks for the update....I

Thanks for the update....I did get the feeling you had a different kind of pump when you mentioned the switch..things have changed as they always do. I do appreciate your responses and hope you're doing great.

motorcycleguy

11Balboa said:

Thanks for the update....I

Thanks for the update....I did get the feeling you had a different kind of pump when you mentioned the switch..things have changed as they always do. I do appreciate your responses and hope you're doing great.

11Balboa,

As always, I'd be glad to give you all the support I can. Please feel free to PM me on here, if that would work on your end.

(I'm generally better at answering messages, than watching the Forums.)

Thanks,

MG

LitlCJdoll

11Balboa said:

Thanks for the update....I

Thanks for the update....I did get the feeling you had a different kind of pump when you mentioned the switch..things have changed as they always do. I do appreciate your responses and hope you're doing great.

Its amazing and encouraging

Its me again,

 

What's amazing is How Much we can all go through...the punishing surgeries & treatments, some of which do truly change our lives going forward.  And yet, these men who answered you here are great examples of how, the ones of us who do our best to Fight----  we can usually pick ourselves back up, and from whatever point that all the punishment leaves us,  we still get Up and move on from there. Wherever it is.

 

I know you said his cancer has come back.  That's very sad to hear and its a rough go..  I myself, mine has returned 5 times plus a new primary which came up after radiation.  And it was "mad"!! it didn't care that it had been radiated... It grew fast and invaded everything in its way.  More surgeries, and a very close margin of only 1 millimeter.   My first Primary tumor ?  No clear margin in the back. "The margin was Indeterminate'. So, right there I was set up for all those recurrences....

 

Yesterday, I had my Yearly Physical, with my long time Primary Care physician.  In his Notes he wrote this :

*""Again I am very impressed with her resilience and perseverance and upbeat attitude in the midst of her very challenging circumstances."*

 

He wrote many more sentences just like that.  From the beginning, he's been blown away at how I keep picking up, and moving forward.

I'm not trying to brag here..... But its a fact I have a tremendously heavy load.  Even before my cancer, things were piled against me. From birth, with a genetic blood disrase, which is the likely source of my aggressive cancer. 

He knows this well because he has been my doctor since 1994.  My cancer was diagnosed 2017 ( but it was present in me, years before. We know this)

 

I think its some kind of stubbornness I have, to keep trying to present my best self....   to keep going. Like its a challenge.!

I am tired though!!!  Yesterday, my weight was 72 pounds, clothed, and he heard Crackles sounds in Both lungs, still. The pneumonia is still present, though I can move air, better than in May through July.,  he said.  I see Pulmonary next week.

 

I guess what I'm saying is stay strong, for each other.  Changes come, its inevitable whether its cancer or something else. Just do your very best to get through, to fight back,  and don't lose your sense of humor! Enjoy whatever good you can create or Find in each day.

 

And look at the examples of these fine men who posted here!!  They are really, really Amazing!!  

 

Crystal