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Chemo Question

Posted: Tue Mar 22, 2016 8:42 pm
by mike1965
I saw oncologist today. He wants to start Chemo on Apr. 18th. He wants to do six months of chemo with Folfox every other week. He wants to implant a port in my chest. He stated that I would go in on Mondays for six hours for chemo and then they would hook up a chemo pump to run while at home for until I returned to the office on Wednesday. My question is this standard chemo care or are there other options. Thanks

Re: Chemo Question

Posted: Tue Mar 22, 2016 8:55 pm
by HopeForJesse
Hi Mike,
I am fairly new to this forum too but I can tell you that is the exact same treatment for my DH. In the furture, they can teach someone how to remove the infusion for you after 48 hours so you don't have to always go back in the Wednesday after.
Good luck and lots of prayers for you.

Re: Chemo Question

Posted: Tue Mar 22, 2016 8:59 pm
by midlifemom
Mike, there are always options, butt 6 months of folfox with 46 hour pump is standard care.
One other option you may want to investigate/discuss with onc is Xeloda instead of the pump. I never did xeloda so can't offer much of an opinion, butt use the search feature and you will find discussions on both folfox and xeloda.
Best of luck.

Re: Chemo Question

Posted: Tue Mar 22, 2016 9:13 pm
by mike1965
midlifemom wrote:Mike, there are always options, butt 6 months of folfox with 46 hour pump is standard care.
One other option you may want to investigate/discuss with onc is Xeloda instead of the pump. I never did xeloda so can't offer much of an opinion, butt use the search feature and you will find discussions on both folfox and xeloda.
Best of luck.

Thanks MidLifeMom. I will ask oncologist about Xeloda. I really do not want the port and pump but I want to be aggressive in my treatment. I will see what he says.

Re: Chemo Question

Posted: Tue Mar 22, 2016 9:44 pm
by Ajane
Mike, if you choose Xeloda, but want to be as aggressive as possible, as a stage 3, of course you'll need to add Oxaliplatin. It can be given intravenously, but can be really hard on the veins. I can attest to the fact that it was hard on my veins via IV, but much easier via the port. If you have any issues with reflux and routinely take PPI's (Prilosec, Nexium, etc), you're not a candidate for Xelox. There was an article presented at the ASCO meeting last May indicating that PPI's interfer with the absorption of Xeloda. Unfortunately, we did not know that when I started my chemo last June. After two horrid rounds when I could not complete of Xelox, at the prompting of another member here, I started researching PPI's and Xeloda. That's when I found the article and presented it to my Oncologist. We switched to Folfox and did fine. I only needed an occasional Zantac to control the gastric upset.
Sorry for the book and the soapbox. I just don't want anyone else to go through any unnecessary pain and ineffective, ill-absorbed Xeloda!
Good luck to you, Jane

Re: Chemo Question

Posted: Tue Mar 22, 2016 9:54 pm
by mike1965
HopeForJesse wrote:Hi Mike,
I am fairly new to this forum too but I can tell you that is the exact same treatment for my DH. In the furture, they can teach someone how to remove the infusion for you after 48 hours so you don't have to always go back in the Wednesday after.
Good luck and lots of prayers for you.


Thank you for info. I am still learning about this chemo.

Re: Chemo Question

Posted: Tue Mar 22, 2016 10:48 pm
by Snapfish
There is so much to learn in what feels like such a short amount of time, but you have come to the right place for advice and input.

If you do FOLFOX, get the port. Doing chemo via IV can destroy your veins in short order. I'd recommend you also think through what day of the week you want to have your treatment. FOLFOX is different for everyone, but it seems that the days when most people are wiped out is the day of the disconnect and the day after. My dad started on Thursdays and was down for the count over the weekend (Saturday disconnect).

-snapfish

Re: Chemo Question

Posted: Tue Mar 22, 2016 11:26 pm
by Ajane
Honestly, I agree with snapfish on both issues. I remember during cycles 3-4 telling my nurses how much I loved my port. As far as scheduling goes, my chemo was on Thursdays but the clinic was always open for disconnects, etc on Saturdays till noon. I would always need fluids by Saturday (plus the following Monday and Tuesdays). I managed fine with this schedule. But the unknown factor is that some patients will need fluids before the disconnects, some not at all. So to be be on the safe side, ask for Mon or Tues.

Re: Chemo Question

Posted: Wed Mar 23, 2016 12:05 am
by mike1965
Thanks for the input. The doctor said it would be on Monday. I emailed him and asked about xeloda. He responded that I could do xeloda but I would have to do oxaliplatin by IV therefore would need a port.

Re: Chemo Question

Posted: Wed Mar 23, 2016 12:34 am
by BeansMama
Having the port makes things much easier. No fishing for a vein, fewer blown veins etc. They can use the port for more than just chemo. I have labs drawn from mine, have had a regular IV through mine when I was hospitalized, they also use it for the contrast for a CT scan.

As others have said, the chemo your onc is recommending is the standard. The pump really isn't that bad. I was getting my infusions on Tuesday, my worst days are the day after infusion and the day after the pump comes off. I recently switched my infusions to Wednesdays, I start that tomorrow, we will see if I miss less work this way (fingers crossed!)

Re: Chemo Question

Posted: Wed Mar 23, 2016 1:54 am
by mike1965
Ajane wrote:Mike, if you choose Xeloda, but want to be as aggressive as possible, as a stage 3, of course you'll need to add Oxaliplatin. It can be given intravenously, but can be really hard on the veins. I can attest to the fact that it was hard on my veins via IV, but much easier via the port. If you have any issues with reflux and routinely take PPI's (Prilosec, Nexium, etc), you're not a candidate for Xelox. There was an article presented at the ASCO meeting last May indicating that PPI's interfer with the absorption of Xeloda. Unfortunately, we did not know that when I started my chemo last June. After two horrid rounds when I could not complete of Xelox, at the prompting of another member here, I started researching PPI's and Xeloda. That's when I found the article and presented it to my Oncologist. We switched to Folfox and did fine. I only needed an occasional Zantac to control the gastric upset.
Sorry for the book and the soapbox. I just don't want anyone else to go through any unnecessary pain and ineffective, ill-absorbed Xeloda!
Good luck to you, Jane


Ajane thanks for the info. It appears I have two options to have Xeloda with Oxaliplatin where I am taking 6 pills a day for 14 days and Oxaliplatin in IV every 3rd week. Or I can do Folfox with the chemo three days a week every other week. Tough Decisions. Since it appears the Oxaliplatin has to be done I think I am leaning toward Folfox since it is three days every other week versus taking lots of pills.

Re: Chemo Question

Posted: Wed Mar 23, 2016 8:08 am
by Nik Colon
If you have the pump, I had a nurse come to my house to disconnect, my insurance paid for it, so this is an option also.

Re: Chemo Question

Posted: Wed Mar 23, 2016 8:34 am
by mike218
mike
recheck with MD about if you need to be Monday (or is it just the day they do it in his office) I ended up getting mine in the hospital Infusion room and did THursday-after the 1st few rounds actually went to work Friday (kind of a stationary job) and disconnect Saturday-(wife is a nurse) --push for what makes your life better-not blowing 3-4 days midweek because it fits MD schedule-
First few sessions wore me out but it got better -and hydrate-even if you find that you need to run IV fluids pre chemo its worth it --did 12 rounds Folfox with Emend IV for nausea
now on Folfiri /Avastin after CEA crept up and new lymph node

mike218

Re: Chemo Question

Posted: Wed Mar 23, 2016 11:07 am
by Nik Colon
For me, the first 2 days I had more energy cuz the steroids, then I crashed, horrible fatigue on 3rd. Fatigue throughout, but day 3 was my worst.

Re: Chemo Question

Posted: Wed Mar 23, 2016 12:42 pm
by kellywin
Mike - I'm going to add my 2 cents about considering Xelox (Xeloda + Oxaliplatin). I didn't have Folfox, so I can't speak to that, but I can tell you I'm glad I chose Xelox. Having 3 weeks in between infusions gave me more time to feel better and it was easier for me to work full time on that schedule. I had zero issues with Xeloda (pills). I was on it for 5 days a week for 5.5 weeks during radiation and then 6 rounds after surgery. There's no carrying around a pump and it is possible to have it in the vein (no port). Some people have an issue with the vein, I did 5 rounds (I was supposed to do 6, but the last round they ended up scrapping the Oxi due to side effects and was only Xeloda). If I were doing much more than 6 rounds, looking back, I'd probably have gone with the port, but 6 rounds is definitely doable in the vein (at least for some people). The pills were no big deal, 3 in the morning and 3 at dinner, down in one swig.

Everyone has their own personal choices, it just depends on what works for you.

Good luck!