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Starting Xeliri + Avastin

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

I'm still maintaining and even adding to my natural protocol; but with my cancer being so aggressive I'm going to add some chemo.  I've worked out a schedule of Xeloda one week on, one week off, Irinotecan and Avastin infusions every 2 weeks. My Oncologist believes this is a strong combo, so we'll know if I respond from my next scan in 2.5 months.

They were impressed that I am doing so well due to Mistletoe injections. For now, my appetite is strong, I sleep well, and have very little anxiety. I feel strong enough to handle the chemo drugs now. Expecting fatigue and hair loss. If anyone has any words of encouragement, I'd sure appreciate it.

I remain positive and want to fight this hard. 

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

I’ve been on Avastin and Xeloda For more than a years. It has prevented the spread of my cancer and reduced the size of my tumor a bit.

I get 400 mg of Avastin infused every three weeks and take 4000 mg of Xeloda daily for two weeks with a week off.

The side effects have been minimal for me. A little fatigue from the Xeloda and not much,bothering me from the Avastin.

Good Luck

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

I love hearing that you've responded so well. I won't need a port for this so I'm hopeful my veins hold up. 

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I can only relate to Xeloda and Oxaliplatin. If the other drugs are like Oxaliplatin, then that schedule sounds rough. Hopefully they are not as bad. Xeloda on/off doesn't sound too bad. I'm two on, one off and it's causing hands and feet but otherwise tolerable. I can only hope for the best for you.

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

I'm working with 2 Oncologists and one specified NOT to use the Oxi . Just for me personally. I still suffer cold sensitivity and occasional numbness in my feel from my previous Xeloda use last Summer. The Irinetecan (sp?) will most likely cause hair loss, but worth a try. They think fatigue and diarrhea will be the worst of it. I'm ready. Hope I can enjoy some of the Summer this year!  How are you doing, Mike?

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

Pretty crappy right now. My toes and fingers are a real mess (look and feel awful). I think that the Oxaliplatin has peaked though so should be improving from here. Another two cycles after this one. I'm hopeful but it's definitely a long, long slog. It doesn't compare to Stage 4 but I know a bit of what you guys are going through.

Trubrit's picture
Trubrit
Posts: 5457
Joined: Jan 2013

If its bad, its bad. No matter the stage. 

Tru

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

We are all fighting hard, dealing with similar treatments, side effects, and anxiety! Plus it makes me feel doomed when people react to my stage 4 diagnosis. I know you are absolutely compassionate and caring in your comments. And maybe I'm crazy or in denial, but I refuse to lose hope based on my stage.  

Pamcakes
Posts: 110
Joined: Jan 2018

I can't speak from my experienc. DH said the oxi mix was hell. He is still suffering, but said at 38 happy to put up with the side effects. He completed 2 cycles of Xeloda one week in one week off with Avastin on  the on weeks. The hand foot syndrome started immediatelY. You may have already experienced this and may be prepared. We truly hope you do well with your treatment. It's all so hard. I can only speak from the spouse point. I started reading the forum about the time you started and have been following your journeY. So much respect for you!!!

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

Pam, I think it's harder for our families and especially our caregivers. Thank you so much for the kind words. Since I was pretty concerned about getting a port, the Oxi wasn't really an option. I've read a lot about how it can tear up your veins, arms, etc. And I know it's powerful stuff, but the side effects are frightening. Yes, I still feel like my feet are packed in ice, especially at night. But it's something I could live with. 

Hope and pray your husband continues to improve. Keep reading, researching, and trying new things. I've decided to spend every day living, not dying. If things get bad, I'll try to continue to experience as much joy as possible. 

airborne72's picture
airborne72
Posts: 281
Joined: Sep 2012

You can do this!!  To hell with cold feet, as long as you have a warm heart.

Jim

Annabelle41415's picture
Annabelle41415
Posts: 6709
Joined: Feb 2009

You've got all the encouragement from me.  I'm amazed at all you've been through and now what you are going through.  You just seem to take all the options in place and then go for it.  I'm praying that this works and you get some relief.  Thank you for giving us an update.  I'm praying for you.

Kim

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

You are two special people here, and your encouragement and prayers mean the world to me. Jim, I just love your finish line photo for so many reasons. And I've mentioned before how much beauty and grace Kim exemplifies. I just read about how Sharon Osbourne beat CRC down after a 2002 diagnosis. It is possible. 

airborne72's picture
airborne72
Posts: 281
Joined: Sep 2012

Beth:

Ironically, this is a very special picture for me.  I was initially hesitant to post it for personal reasons.  This was my last run - a half marathon in October 2009.  I had just finished my bout with prostate cancer and struggled to go the distance.  Little did I know that I would soon undergo two spinal fusion surgeries, which ended my running.  And to top all of that, I never imagined the ravages of rectal cancer and what it would do to me in 2017. 

On a humorus note, I ran the 13.1 miles with no worries about urinary incontinence!  No one could tell the difference between urine and sweat.  Ha!

That is my only son in the photo with me.  He is not a runner but he agreed to run the race with me in my honor.  I was crying after we crossed the finish line and gave him a big, sweaty hug.  No one in the crowd had any idea of the significance of that moment.  This is one of those memories that will remain with me forever.

As you well know, our families are so much a part of our fight against CRC, and any ailment.  We have been blessed to bring them into this life and to show them the way.  There comes a time when we must hand off the baton to another runner, and let that person run the race.  It is truly touching when it is a son or daughter who accepts the responsibility and continues to run the race of life.  For me, this photograph captures that moment.

You are now facing a great challenge in your life but I know that your family is supporting you all the way to the finish line, as are the rest of us on this forum.  You can do this.

Jim

 

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

Thank you for sharing that very touching and powerful story. Your son must admire and live you very much. What more can one ask for in life? It's a spectacular photo. 

And we still have a lot of living to do. 

Annabelle41415's picture
Annabelle41415
Posts: 6709
Joined: Feb 2009

How truly blessed you must be to have a son, that really doesn't run, took that challenge with you.  Sometimes, like a challenge, is what it takes to move forward and he was willing to do this because of you.  It shows what a wonderful person you are and what a wonderful son you have raised.  You must have been both sweaty so who's sweat is on who. Glad you both finished the race. 

Kim

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Wow! Great photo and personal story Jim.  It gives me chills...  Such a treasured memory... 

Cindy

Canadian Sandy's picture
Canadian Sandy
Posts: 705
Joined: Jul 2016

Lots of prayers for you BRH. Miracles are for everyone not just me. You seem to be such a strong person and roll with the punches as I do.  Will keep you in my thoughts. 

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

Yes, I had to make a conscious choice to get out of initial shock and depression. Life is too short to waste a single day.  Please tell me how you are doing! You must still be recovering from surgery. 

Canadian Sandy's picture
Canadian Sandy
Posts: 705
Joined: Jul 2016

i am much better than I was, most of the pain has gone now. Thanks for asking. You can find really cute chemo slouch hats online. I loved mine and got many compliments. Take care of yourself.

Go to headcovers.com they have a lot.

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

I really have no idea what to do. This will be a great option!

Saraaaa
Posts: 13
Joined: Sep 2017

Hey brh. ImI mostly a silent readerr. My mom has stage 4 cancer. Can you please tell me about mistletoe injections? 

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

I will send you a message with some detail. My quality of life is amazing and I credit mistletoe 100%. I was a skeptic. Not anymore. 

Saraaaa
Posts: 13
Joined: Sep 2017

Hey brh. ImI mostly a silent readerr. My mom has stage 4 cancer. Can you please tell me about mistletoe injections? 

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

So glad to hear how you're fighting hard Beth!  It encourages us all...

Cindy   

Woodytele
Posts: 163
Joined: Apr 2017

Can you send me details of the mistletoe injections. I would appreciate it. 

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

It's not presented as a cure, but has helped me immensely. 

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

I haven't had the same combination  that you'll be on, and have never  had Xeloda, but I  did have Avastin  with 8  Folfox treatments plus 4 5-FU/Fuslilev/Avastin treatments  following    28  radiation treatments with 5-FU in late 2015. I've been on a combination of irinotecan plus Erbitux every other week  since April, 2016.  I don't remember any adverse  events from the Avastin other than the fatigue, but it wasn't bad enough to keep me from being reasonably active, getting out and doing things. My hair did begin to thin after 6 treatments with the irinotecan/Erbitux, but I had  it shaved off on the sides, spiked the top and dyed it blue  as a protest ;-) I bought a wig but it was summer and the wig was uncomfortable in the  Alabama heat. The hair grew back and  hasn't thinned out again. So far,  the chemo has kept the cancer in check ( had a CT scan today,  so we'll see if they're still working when I get the results tomorrow).  I've felt pretty good throughout treatment with only minor problems.With your positive attitude and the support of your family, I  feel pretty sure you'll come through with flying colors. We're all  pulling for you. 

Grace/lizard44

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

I appreciate your comments! My hair thinned a ton last year from rapid weight loss. Not sure what to expect when it starts really falling out. Will be yet another 'great' cancer experience I guess. Good luck with your scan results. I feel like every victory for one of us helps all of us!

Trubrit's picture
Trubrit
Posts: 5457
Joined: Jan 2013

I hope you respond as our friend Grace, has. 

All I know about Irinotecan , is that they nickname it 'I-run-to-can', because of its proclivity to keep you running to the loo. 

Hope you tolerate it well, and see much success. 

Tru

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

That's the first thing the Oncologist warned me of, loose stools. Well, for me that just means I'll use more colostomy bags. I can do it!  Thanks, Tru. You and the others here are the best support group around!

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

My oncologist wrote a  script for Lomotil  when I began the irinotecan.  I only needed them after the first infusion.  Diarrhea hasn't been a problem since,  maybe because of the pre-meds  I get before the irinotecan infusion. I always take an extra  pouch wtih me just in case, though. I also learned today that it's a good idea to take  not one, but at least two, extra bags with me  to a CT scan session. Wow- that contrast  dye  they administer can run through you and fill up a pouch in no time flat. By the time I got home I looked as though I had a fully inflated beach ball on my abdomen! Thank goodness it didn't burst!

Grace/lizard44

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

Grace, I am so glad I'm not the only one who finds humor in our situation. I can't believe I had such a fear of having a colostomy. It is certainly different but no big deal. I had to change it twice at work the other day and felt really comfortable for the first time. I wasn't affected like you were with my CTs though! 

aoccc2015
Posts: 37
Joined: Sep 2017

haha yeah I had that happen my first few rounds of iri..didnt even notice it until i got up out of the chair and like 20 lbs of a poop balloon hanging from me lol. Still at round 13 now I pop a few anti diarehea pills before treatment and the next day my bags have to be squeezed out they are so thick :). My hair actually got thicker on my head but my arm hair and leg hair is patchy in areas my body rubs against clothing at work. No real issues other then hiccups for a day... I hope it works that easy for you..take care.

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

That is encouraging! I'm definitely bringing extra bags to the infusion. Thanks for the reminder. Side note: don't know how anyone can stand the drainable bags. I switched to disposables early on. I know I'm not helping the environment much, but far less mess. :)

Ruthmomto4's picture
Ruthmomto4
Posts: 694
Joined: May 2013

i am so happy you are feeling strong enough for the chemo. My husband only did one dose of irinotecan but did 12 of Avastin. Not sure if it gave him any side effects because he was doing Folfox with it. You are totally going to rock this and get through it. No one needs hair! Actually my husband’s Hair thinned and it all fell out in his legs. Nothing noticeable though. I am totally here rooting for you and sending love and positive thoughts!!

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

Losing leg hair would be a plus! Thanks for your support, Ruth. How's your dh doing? 

Ruthmomto4's picture
Ruthmomto4
Posts: 694
Joined: May 2013

one more week until his surgery, having his stent removed on Thursday. I am just hoping nothing else goes wrong or comes up before the 1st!

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

I really get nervous counting down to a procedure, especially surgery. Your husband and family are in my prayers! 

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