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Opting for Cap/Ox/Avastin adjuvant chemo. Any experience?

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Met with Oncologist today.  Since I don't want a port, he said we can do Xeloda at a higher dose, along with Oxyplatin and Avastin.  Has anyone else chosen this route?  I would be interested in your experience.

I would be 7 days on, 7 days off with Xeloda.  4 pills am and4 pills pm.  They would inject the Oxy and Avastin every other week.  I will.get a CT scan at 2 months to see if I am responding.  Sure hope so!  My cancer is pretty aggressive.  Genetic testing of the tumor after surgery revealed no Lynch, but one KRAS mutation.  They know I won't respond to a few drugs.  He is sending out for more testing to see if I'm a candidate for clinical trials if needed.

 

Thanks!

Makord
Posts: 38
Joined: Oct 2017

hello! What stage are you? My mother was diagnosed stage 4 rectal cancer with mets in liver and lungs just a month ago, 2 months after rectal surgery; she opted in for Folfox 4, she didn't want a port either hence we will be entering hospital every 2 weeks for 2 days. She has KRAS mutation so some targeted drugs are not an option for her either. We try to see as we go forward if she can take Folfox 6 (same drugs as Folfox 4 but bigger dosage in one of them) or she stays with 4. Also we will see if we will risk with Avastin. The combination of Folfox and Avastin is better vs Folfox alone but my mother has serious vescular problems and Avastin is responsible for some vessel side effects as far as I read; our doctor doesn't want to add right away. We will see.

hope this helps, all my warmest wishes for the very best! Take care and share your news.

mariana 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Hi Mariana.  I am also stage 4 like your mother.  You seem like a very loving caregiver.  I will not need to be hospitalized for treatment.  Just hope my veins don't get too beat up.

Hoping and praying we respond positively to our treatments!

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I’m KRAS mutant as well and am looking at similar stuff in a month. How are you feeling these days?

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Hi, Mike.  I am feeling good overall.  I will go back to work in a few weeks.  Hope I can keep up during treatment.

Glad your surgery went well.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

That’s outstanding stuff. I’m glad you’re feeling that much better.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Do you know when you can return home yet?  Took me until week 3/4 to feel like myself again.  Light headedness has disappeared altogether.  Incisions are healed.  Mastered the ostomy.  Gaining weight...finally.  Was down to 144 in hospital.  Up to 156 yesterday.  This is a good weight for my frame.

Hoping your pain mgmt is going well.  That was the hatdest part for me.  Along with insomnia that I am still working on.  Need to be strong for upcoming chemo!

SophDan2's picture
SophDan2
Posts: 145
Joined: Jul 2017

Throughout my treatments, I did not like or want to take the antinausea drugs, so I decided to try medical marijuana edibles. I only used them 3 or 4 times during 12 treatments, but what it helped me the most with was the insomnia. i would wake up in the morning feeling like I had a good night's rest.

It really really helped.

Just a thought!

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I have my MM card and use THC oil at night many nights.  It helps a bit.  Edibles are so unpredictable!  I should experiment more.  Thanks for the suggestion.

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

I had Oxaliplatin through a IV Port and had a leak. I don't see how you can take it without a port. I had a Blood Clot develop and needed 80 days of Xyrolta after the leak.

I'm on Xeloda and Avastin as maintenance Chemo. No apparent problem, dropped my CEA from 9.8 to 3.9 and is steady.

You need to watch High Blood Pressure and Protiens in the urine.

Best of Luck in your treatment.

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

I'd think that would be difficult with no port with the oxi.  I'm not sure how they will infuse it but if it's through the veins it can wear havoc on those.  Why no port?  It was easy to put in and very accessible and easy to take out.  Just wondering why you don't want a port.  Hoping all goes well.

Kim

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Hi, Kim.

I know risks are minimal with a port but I have some odd fear about it.  Oncologist said I have good veins so I can get the Oxy & Avastin intrvenously.  And I'll take Xeloda orally instead of Folfox.  He said they do this in Europe.  And a large study showed no difference in outcomes.

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

You can always change your mind if you find that the veins start collapsing or not performing the way you want.  Just try to be open to it.  My first round was Xeloda, but needed to take Folfox after surgery and that's when my port was installed.  Good luck and wishing you the very best.  Remember you can always change your mind during treatment.

Kim

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I think you will find most people here who had the port, will scream, 'GET A PORT!'.  

I did have a freind who had IV cheom in England, and it shot his veins so much that he ended up getting a port. 

Of course there are risks, and some people have problems. Oh, but the port was SUCH a blessing. So easy to access, for me at least. No pain! The only thing I didn't like, it was place under my bra strap, which was quite inconvenient. 

But of course, it is your body and your choice, and whichever you choose, we wish you the best of everything. 

Good luck as you go back to work. 

Tru

Watersprite3
Posts: 31
Joined: Sep 2017

My doctor didn't give me any real choice in the matter - he just sent me to get the port.  I was still early in the whole process and didn't really know much about it.  You can start the chemo without the port, and if your veins start getting beat up can have one put in.  I have never regretted having mine, it seemed to make everything easier.  My only problem was if I was a passenger in a car the port was just under my seat belt.  Since I tend to drive myself everywhere (including to chemo) that didn't present much of a problem.

Like Tru said, "it is your body and your choice".  Hope everything goes well for you.

Eileen

 

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

i am so happy you are feeling better! If you don't want the port and the doctor said it ok then go for it!  you can always get it later if you have to right? My husband said it was pretty simple you don't even notice either. Whatever you do it's your call, I hope you feel good through the treatment!!! 

coloCan
Posts: 1956
Joined: Oct 2009

The oxi may cause pain in your arm when injected......

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Hi. When I started my treatment (xeloda pills and oxy infusion) my port was blocked. They had to give me the oxy using IV. It was rough stuff. It blew out my vein. I remember it hurt quite a bit and afterwards the vein in my arm was rock hard. It took a while to return to normal.

Not sure if the same will happen to you but I was very glad I had the port after that first infusion.

k

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Thanks, everyone, for the input.  That is scary that the Oxyplatin was hard on some of your veins.  I am sitting with the chemo specialist next Wednesday and will bring all of this up.  The Oxyplatin brings on the worst side effects.  It''s probably important in killing the cancer since they don't reduce the dose or remove it until the neuropathy is intolerable.  I am not looking forward to this, but owe it to my family to try everything I believe may help.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Hello Beth,

Thats the thing with Oxy - vast majority have problems with it but do it anyways. And I expect to do it wigh a port and see those symptoms myself. I gave myself an injection today and I’m scared of needles. I think that we’ve all done a lot of tough things in this journey.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I did  eight rounds of Folfox plus  Avastin (with a port) and had few troublesome side effects.  My oncologist and the nurses had warned me beforehand what to expect from the  oxaliplatin and advised me to not eat or drink anything cold, never let my feet get cold ( I wore socks at all times- even to sleep in), and wear gloves whenever  opening the fridge, shopping in the frozen foods section, etc. I do have a little neuropathy in my feet, but it's quite minimal. I hope you also have minimal side effects.

Grace/lizard44

 

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Beth:

My only experience with chemo so far has been Xeloda, just like you.  Also, similar to you, I have decided to do mop-up chemo, but with provisions.  My chemical will be FOLFOX6.

I discussed this with my onco yesterday and this was the joint decision - I will do 6 two week sessions and if prior to that point I begin to feel the effects of neuropathy I will throw in the towel.  My hands can't take any additional circulatory/sensory maladjustment.  That is the quality of life line that I have drawn.

My start date is 15 November provided I bulk up some (133 lbs currently) and my ostomy is ready to go.  To heck with my ostomy, I am ready to get this over with and put this disease behind me!!

Jim

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

 Would love for this to be behind you!!  So no Oxy or Avastin for you?  How awesome.  I think I need them vecause I am Stage 4 now.  But I am not thrilled with the Oxyplatin side effects.  

I am only looking at 2 or 3 months of chemo to start.  Maybe he thinks my veins can handle it?  You've all given me cause for concern.  I will discuss with the docs before committing.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

that Jim mentioned is a combination that includes oxaliplatin: FOL= Folinic Acid; F=Fluorouracil; OX=Oxaliplatin

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

For clarifying.  I should have realized.  Getting my official education next Wednesday.  Really nervous about this stuff, but gotta try it.

 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

It never ends, and it shouldn't.  I'm still learing stuff, and I'm five years out. 

FOLFOX can be very harsh. I will warn you. FOLFOX can be a walk in the park, or so they tell me. You won't know how your body is going to handle it until you are in it.

One thing I wish I had done differently is I wish I had pushed myself to stay a little more active at the beginning. The fatigue hit after the first infusion, and I gave in to it, by sitting on the couch. I wish I had pushed at the beginning, as the fatigue only got worse. I think (therefore I don't know) that it may not have been quite so bad, if I had pushed, just a bit more, at the beginning. 

I do have a list, if you are interested, of my own personal side effects. You may have seen me post it, here and there. Its not pretty, and most people don't suffer so, but it could be helpful, at least to give you an idea what to look out for.  

You were a champ throughout the surgery and recovery, and I have no fears that you will be a champ through your chemo. And of course, you know we're all here to route for you and help you at any time. 

Tru

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

You've been through this a few times already though. I'd guess that you were nervous before chemo and radiation, then before surgery. So this it the next thing. I'll be anxious about it too but I've seen so many people go through it despite knowing about the problems that the numbers of others make it a little easier for me to go through it as well.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

You are so right that I've endured a lot already.  It's just that I am finally starting to feel like myself and....here we go again.  I appreciate the encouragement to remain active.  I will be going back to work (from home most days), driving to infusions, trying to keep up with my family's needs.  That will hopefully keep my mind more positive.  

Deep breath.  I can do this.  

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

For the first infusion, at least, to have someone available to drive you just in case you have a reaction that might make driving difficult, dangerous, or unwise.

Grace/lizard 44

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

I agree with Grace. I feel sick and drowsy about an hour after my drip and there's no way I could drive. Either my friends would pick me up or I would call a cab. 

Frankie Java's picture
Frankie Java
Posts: 3
Joined: Nov 2017

I'm having an Avastin infusion tomorrow morning, before starting first Xeloda treatment after evening meal. My question is prosaic, but practical: can anyone report what I might expect from this first Avastin infusion? I have an appt with a neurosurgeon (my stage 4 colon cancer moved into brain in July, necessitating a craniotomy) three hours later and I"m wondering whether they'll be any issues with me driving. Thanks.

 

mysweetheartrusty's picture
mysweetheartrusty
Posts: 19
Joined: Jun 2017

I can say my husband has been on avastin on and off for a year and 1/2. It makes him very foggy headed.

The effect was cumulative over time.

He can drive now but whether or not he will remember where or why he is going somewhere is another problem.

It seems to effect him in flashes almost like someone with dementia.

He also gets easily distracted while driving with things like the radio and will just stare at it which makes him take his eyes off the road longer than he should.

He doesn't realize it....which is the problem when your own brain is not communicating the proper information.

For trips over ten miles I ride with him to keep him focused...and no fast roads. Luckily we have slow empty country road here.

Have someone ride with you in the car to judge your driving abilities before trying go too far. You may not realize you are having a problem.

He is also using with Xeloda at this point and is feeling well with limited side effects.

 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I can't help you with the Avastin question, having been on the FOLFOX/5FU cocktail, but I do want to welcome you here, and wish you all the best as you face this new trial. 

Brain mets are not common, and must be terribly frightening. 

Someone will be along to help you with your questoin, soon. 

Tru

Frankie Java's picture
Frankie Java
Posts: 3
Joined: Nov 2017

Appreciate that, Tru. 

Brain deal wasn't that bad, very little pain. Three weeks after surgery  I was playing basketball.

 

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

I'm on Xeloda and Avastin for maintenance Chemo. I feel no adverse effects personally from the Avastin. I've been on it for 8 months.

Possible effects to watch for, raise in blood pressure and bleeding.

It should not ruin your day.

Good Luck

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

Hi Beth, At the clinic where I receive my Oxaliplatin, they provide heating pad. Keep the arm warm helps alleviate some pain and discomfort. 

One thing that baffles me is that the bathroom at my clinic doesn't have warm water. After receiving the drip and washing hands in cold water is no fun. 

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