I was taught by the hospital  to disconnect at home after the first few weeks. i also had my sister give me the neulasta injections once they taught her. How liberating!! Easy too.

Later, after needing fluid ivs a few times a week I was assigned a home nurse who accessed my port once a week on Monday and I learned how to do the fluids myself. I would the  disconnect at end of week and start the whole process again on Monday.  Super convenient giving yourself fluids as needed while watching Netflix on your couch. My insurance covered it. All it took was a prescription from the oncologist.  He had kind of mentioned the possibility in passing and I jumped on it but never would have known it was possible.

had them show him on the second tome how to disconnect himself. Going back drive him nuts. He would just bring the empty pump to his next visit.

In regards to invasive, quality of life decreasing 5FU infusions, I can't figure out why more pts. aren't prescribed CAPOX vs. FOLFOX.  The onco. world has known since 2004 that Capecitabine is superior to 5FU.

Oral capecitabine vs intravenous 5-fluorouracil and leucovorin: integrated efficacy data and novel analyses from two large, randomised, phase III trials.

https://www.ncbi.nlm.nih.gov/pubmed/15026800

If you don't feel like reading the studies abstract, here is the important info.

"Capecitabine results in superior response rate, equivalent TTP (Time to Progression) and overall survival, an improved safety profile and improved convenience compared with i.v. 5-FU/LV as first-line treatment for MCRC.............Capecitabine is a suitable replacement for i.v. 5-FU as the backbone of colorectal cancer therapy."

Adam

My husband had a home nurse disconnect him.   he was so ready when it was time that if they were late he was calling them on the phone.  He couldn’t wait to be disconnected.   He was diagnosed with stage 3 pancreatic cancer in 2015.  He is doing well. 

PamRav said:

For nuc

In answer to your 5FU / capecitabine question...

some of us just dont do so well on the oral version.  I did fine with the 5FU infusions, but had real quality of life issues with the pills.  Hand and foot issues, ( to the point i had to stop walking for exercise) vision issues, etc.   

I agree having a pump for 48 hr is no fun, but compared to everything else ive been through, not really such a big deal. 

Wish the oral would have worked for me.

Pam,

I'm glad you found that 5FU was a good alternative for you, that's the most important thing, you found what works best for you.

However, multiple studies have shown that for most pts. (of course not all), Cap. is the better chemotherapy drug of the 2.  Better response, improved safety, improved quality of life, all while still having equal disease free survival and overall survival as 5FU.

But, maybe I didn't state the question correctly.  I should have said, "I can't figure out why more pts., prior to beginning chemo, aren't given the option between receiving CAPOX or FOLFOX". The pt. should be allowed to make an informed decision after being explained the differences between the 2.  If the first chemo choice doesn't work well with the pt., switching to the other chemo can be easily done.

I would imagine that if pts. were given the Capecitabine choice, along with its benefits over 5FU, most would not start their treatment with the more invasive 5FU.

Adam

nuc said:

Pam,

Pam,

I'm glad you found that 5FU was a good alternative for you, that's the most important thing, you found what works best for you.

However, multiple studies have shown that for most pts. (of course not all), Cap. is the better chemotherapy drug of the 2.  Better response, improved safety, improved quality of life, all while still having equal disease free survival and overall survival as 5FU.

But, maybe I didn't state the question correctly.  I should have said, "I can't figure out why more pts., prior to beginning chemo, aren't given the option between receiving CAPOX or FOLFOX". The pt. should be allowed to make an informed decision after being explained the differences between the 2.  If the first chemo choice doesn't work well with the pt., switching to the other chemo can be easily done.

I would imagine that if pts. were given the Capecitabine choice, along with its benefits over 5FU, most would not start their treatment with the more invasive 5FU.

Adam

 

Adam:  There are some old discussions of the profit motive to give infusions instead of pills (that are generally filled at outside pharmacies).  I think the reimbursement policies have changed, but at the time my cancer center got 10% of its budget from profit from the infusion center.  For what it's worth.

nuc said:

Hey Buddy,

Hey Buddy,

Pretty sad if doctors are suggesting infusions rather then pills, just to make the cancer center more $$. 

It'd be interesting to hear which of the 2, the Oncologists would choose for themselves, if they got cancer.

This again, strongly reaffirms the absolute need to do your own research and advocate for yourself. 

Adam

 

Agreed.

nuc said:

Pam,

Pam,

I'm glad you found that 5FU was a good alternative for you, that's the most important thing, you found what works best for you.

However, multiple studies have shown that for most pts. (of course not all), Cap. is the better chemotherapy drug of the 2.  Better response, improved safety, improved quality of life, all while still having equal disease free survival and overall survival as 5FU.

But, maybe I didn't state the question correctly.  I should have said, "I can't figure out why more pts., prior to beginning chemo, aren't given the option between receiving CAPOX or FOLFOX". The pt. should be allowed to make an informed decision after being explained the differences between the 2.  If the first chemo choice doesn't work well with the pt., switching to the other chemo can be easily done.

I would imagine that if pts. were given the Capecitabine choice, along with its benefits over 5FU, most would not start their treatment with the more invasive 5FU.

Adam

 

Adam,

I was informed of both method from my oncologist in which I chose the CAPOX treatment: Oxaliplatin via IV drip every 3 weeks, Capecitabine pills for 2 weeks, then 1 week off. The Oxi drip would last about 2 1/2 - 3 hours at my cancer clinic which I didn't mind. I would either read or watched TV. Sometimes I would just napped. I preferred the IV mainly for convenience. I didn't want to have the pump inserted in me and to go back and forth to disconnect the pump after 48 hours.  I was also made aware that in case I had a side effect in the midoe of the night and with the clinic is closed, I would have to go to the ER which they might be unfamiliar with oncology care and could cause delay in treating me. AlI is not what I wanted to go through if I was feeling sick. I often wondered why majority of patients here were given the pump. I don't ever remember from reading of anyone here that had/has the same IV treatment as mine, or if they were given a choice to choose which treatment. I was diagnosed stage 3 colon cancer in July, 2017. Had surgery in August. Adjuvant chemo from September 2017 to February 2018. That was 8 treatments total. I'm still under my oncology care but I've been NED thus far. 

nuc said:

Hey Buddy,

Hey Buddy,

Pretty sad if doctors are suggesting infusions rather then pills, just to make the cancer center more $$. 

It'd be interesting to hear which of the 2, the Oncologists would choose for themselves, if they got cancer.

This again, strongly reaffirms the absolute need to do your own research and advocate for yourself. 

Adam

 

Fortunately when I was diagnosed my oncologist actually preferred the capecitabine for the reasons you have mentioned.  However, he was one of the only ones recommending it at the time.  The unfortunate part was that my insurance would not cover the pills at the time.  They would, however, cover the infusion, which based on what they paid for the oxaliplatin infusion should have been much more than the pills.  I was fortunate that I could make my own choice and I opted to pay out of pocket for the capecitabine since that was the recommendation of my oncologist.  I did experience pretty severe foot side effects which made it painful to walk but I made it through.  

I also opted for the capecitabine while doing radiation which allowed me to continue golfing and doing activities I couldn't while hooked up to the pump.

I do feel the pros and cons of each need to be given to the patients so that they can then make an informed decision as to which is better for them.

SandiaBuddy said:

Same

I started on the same course as yours but dropped the oxaliplatin.  I had to do quite a bit of demanding to get them to do this instead of a port--which was totally unacceptable to me.

It's easier said then done, to advocate for yourself. 

Good job, Buddy

Adam