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Bolus

Butt's picture
Butt
Posts: 318
Joined: May 2018

Appereny a bolus infusion of FU 5 can be reduced to 50 percent or dropped all together. There is no evidence that it is makes chemo better. Reduces side effects. Also you ca by your own disconnect the pump at home after 46 hours or request a home care nurse to come and get it done.Just learned it.

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

They always gave me the push and made me drive 30 minutes to the hospital to get disconnected from the pump.  My insurance wouldn't pay for a nurse to come to my home and do it.  Others should make sure that insurance pays for that as well.  Wish my insurance would have paid for a disconnect at home.

Kim

Steelkiwi686's picture
Steelkiwi686
Posts: 52
Joined: May 2019

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.

 

Trubrit's picture
Trubrit
Posts: 4859
Joined: Jan 2013

I live a 300 mile trip away from my Oncologist, so had a home health care nurse come disconnect me.  Nobody told me I could do it myself.

I also had the daily Neupogen shots at the local hospital. Not too sure if I could give myself a shot, and my hubby definitely wouldn't do it, so I was grateful insurance paid.   I guess if they hadn't, I would have gotten over the squeamies, and given myself the shot. 

Good luck with everything.

Tru

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

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.

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

She has been doing it since the beginning, since my first rounds in 2015, pretty much.  As to the Bolus, I had one treatment with the Iri, Avastin and the Bolus with no pump due to travel plans.  My oncologist mentioned those three would be fine without the pump.  Not all the time, but for a one off.  

nuc
Posts: 44
Joined: Jun 2019

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

SoCal42's picture
SoCal42
Posts: 60
Joined: Jul 2017

I had CAPOX in 2017, and it was much easier than being on the 5FU pump for 48 hours like I am now. The pills were huge though.

PamRav's picture
PamRav
Posts: 251
Joined: Jan 2017

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.

nuc
Posts: 44
Joined: Jun 2019

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

 

SandiaBuddy's picture
SandiaBuddy
Posts: 897
Joined: Apr 2017

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
Posts: 44
Joined: Jun 2019

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

 

SandiaBuddy's picture
SandiaBuddy
Posts: 897
Joined: Apr 2017

Agreed.

lhduffer
Posts: 72
Joined: Oct 2015

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.

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. 

SandiaBuddy's picture
SandiaBuddy
Posts: 897
Joined: Apr 2017

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.

nuc
Posts: 44
Joined: Jun 2019

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

Good job, Buddy :)

Adam

 

 

 

nuc
Posts: 44
Joined: Jun 2019

Hi Lily and ldhuffer,

I'm very happy that you had doctors who cared enough for you, to explain options of care with you.  Seems as if they're in the minority. 

This info. of Cap vs. 5FU has been known for 15 years.  This disease and all its treatments are already so torturous, why not show some real empathy, and make the process as comfortable and non-invasive for the pt. as possible?

  Primum Non Nocere.......Above All, Do No Harm

Adam

OnTheRoad
Posts: 14
Joined: Jul 2018

I read that Capox has a slight better outcome in terms of 5 year survival rates (about 1% better than Folfox). Capox also improves the quality of life of patients since you don't have to use the pump, etc...On the same place I read these benefits it was also mentioned that Capox has higher toxicity than Folfox, thus it is less tolerable for some people.

I hope this is really the explanation about both...... if the doctors are chosing Folfox due to $$$$$ I would be really angry with them.

BTW, I had the chance to chose between both... 2 doctors proposed different treatments for me... one preferred Capox and the other preferred Folfox. I picked up Folfox since the 2nd doctor was really known by his good work. I will try yo find out more details later ! Wink

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

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. 

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

That is so great to hear that he is doing well.  I love seeing that.  (I was DX about the same time myself)

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Great to hear that you are doing well too!

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