No more oxaliplatin for me - now what?

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NWgirl
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No more oxaliplatin for me - now what?

Postby NWgirl » Tue Apr 15, 2014 8:58 am

Well, I met with my oncologist yesterday. Had my first round of FOLFOX a few weeks ago (had to delay it a week this time due to vacation) and was ready for round #2. I had FOLFOX back in 2008 and although it was brutal, I made it through 10 rounds. I swore I'd never do it again, but never say never. I learned if I don't eat during FOLFOX infusion (or FOLFIRI), it is much easier to tolerate. I can eat lunch when I get home - just not during infusion. It still sucks, but I can function.

So bring it on, round #2. My oncologist was very optimistic that this drug would hold things back at least for awhile and help with my back pain. I get all my pre-meds, dex, aloxi, emend, all the good stuff. Then they hook up the oxi. I make a quick trip to the bathroom, sit down and realize, my tongue itches. My tongue never itches. I turned to the chemo nurse next to me and told her my tongue itched - and that I was guessing that wasn't good. No she said, it isn't. "Now my whole mouth itches" I told her. I don't exactly remember what the chain of events were next. Thankfully my friend Maria (who ironically had just quit her job the Friday before and drove me yesterday) was there with me. I knew they'd be getting me some Benadryl - and according to Maria they shot a lot of it into my IV line very quickly. I remember my heart beating like it was about to come out of my chest. I remember getting very nauseas but not being able to throw up. I remember my head hurt. I remember my legs couldn't stop shaking and things felt very, very wrong. I remember black spots and things getting dark - I remember saying something was wrong - I didn't feel right and I thought I was going to pass out (I didn't). I remember my doctor being there watching the nurses work, checking my vitals, asking questions, giving directions - they gave me 1 mg. of Ativan and that finally helped calm me down. The blackness went away (and I did not pass out). It took a long time for me to calm down - and then I slept for 3 hours.

My oncologist said "no more oxi - it's too dangerous". This was good and bad news - I hate oxi, but it was one of my last hopes to push back the cancer. I have an appointment again with him tomorrow. He wouldn't even give me the 5FU yesterday. I don't get a bolus on infusion day - so I would have just worn the pump home, but he wouldn't even approve that. I don't remember much of what happened yesterday once this started happening. I remember my doctor saying I couldn't drive myself home and being thankful that Maria was there. I remember she got me home and got me something to eat. I remember going to bed early. Most of it was a blur. I think I remember the nurses saying this sort of episode generally happens near the end of the infusion - mine started about 10 minutes in - they said I hadn't gotten more than a tablespoon of oxi. My body made it known - very loud and clear - it wants nothing more to do with this drug.

So I see my oncologist tomorrow. Maria may or may not drive me. I think I'll tell her I can drive myself - she may not let me. She's that kind of a friend. My insurance company won't approve Zaltrap, though we did just change carriers April 1st so we may revisit that. I can do 5FU by pump; Xeloda has just been too hard on my as far as hand/foot syndrome. And we'll probably discuss Regofenarib (?) - I can't remember how to spell that. I just don't have many choices left. I've half heartedly started looking at clinical trials - perhaps I should get very serious about those now.

So that's my story. I'll write an update after Wednesday. No one, especially me, expected this. I should note I partied very hard the night before infusion. It was our celebration BBQ at my house with some of the Fight Colorectal Cancer crew. You know - perfect beautiful weather, fabulous friends, food, wine, beer - laughing so hard you think you're either going to pee your pants or bust a gut. That sort of day - but I disclosed all that to my oncologist - I'll bring it up again to make sure that didn't have anything to do with it. I doubt it's the first time I've showed up for chemo after having a few glasses of wine the night before - one last hurrah and all.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Bev G
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Re: No more oxaliplatin for me - now what?

Postby Bev G » Tue Apr 15, 2014 9:32 am

Dear Belle,

I hate this for you! It must have been utterly terrifying for you. I'm so glad everyone was right on it, and also am really glad you don't remember all that much of it...who would want to remember all that too clearly. I hope they are putting lots of heads together for a brilliant new plan. Sending you a lot of gentle hugs and much love today.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

weisssoccermom
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Re: No more oxaliplatin for me - now what?

Postby weisssoccermom » Tue Apr 15, 2014 9:35 am

Belle - I can hear the pain in your voice....a dejection of sorts. I can't even imagine what is going through your mind and I'm glad that Maria is there with you now and most importantly, was there with you yesterday. I wish I had words to tell you all the right things, to put your mind at ease and to somehow 'fix' all of this. Wouldn't that be wonderful if it was only that easy?

The words aren't coming to me now....I don't know what to type and frankly, what not to type. I know that you and your doctor had put a lot of hope and trust in the oxi. Is it possible that there is another drug, not specifically for colorectal cancer that will work? I only ask because my friend's friend who is going through treatment for pancreatic cancer failed her first line of treatment and they switched her to FOLFOX which, appears to be working.....at least so far. Doctors can and do change protocols but I haven't heard much about it on the forum but that doesn't mean it doesn't happen. Have you talked to your doctor about that possibility?

Send me a PM if you are up to a phone call. There's more to say than I can do on this board. Just know that I am sending you hugs and thinking about you and praying for you. Just a weird thought, but the allergy season up here is horrendous. I spent most of yesterday absolutely miserable even with my allergy medicine and the news people keep saying that it is SO bad this year. I have no idea if you are also affected by allergies but, just being curious here, were you affected yesterday by allergies and, if so, could that have had any bearing on your reaction to the oxi? In other words, IF you had seasonal allergies yesterday that were pretty bad, could your body have already been so strained by those allergens that adding oxi to the mix was just too much?

Hugs, prayers and good thoughts are being sent to you.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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Grace14
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Re: No more oxaliplatin for me - now what?

Postby Grace14 » Tue Apr 15, 2014 10:57 am

Belle, I don't usually respond, because my writing skills aren't that great! I felt that I had to let you know I am always thinking of you. You are truly an amazing person! You are one of the few people on here who would respond when I had questions, and you really helped me a lot with your kind words! I don't know why such great amazing people have to go through so much in life. If anyone deserves a free pass its you Belle for being so kind, and helping so many of us.

You are in my thoughts, and I hope that you can start some other treatments soon! xoxo
Diag Stage 2a R/C April 2010 at 38
Rad/chemo 6 weeks
Apr surgery July 2010
Folfox 4 months
Jan appendix removed
Feb diag papillary thyroid cancer no treatments stage1
Ned so far!!!
Mother of 4 boys 21 18 11 8

KWT
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Re: No more oxaliplatin for me - now what?

Postby KWT » Tue Apr 15, 2014 11:09 am

What Grace said!

I'm glad to hear you had a great night before and hope you get many more of those.

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juliej
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Re: No more oxaliplatin for me - now what?

Postby juliej » Tue Apr 15, 2014 11:42 am

What a frightening experience, Belle! I'm glad you had someone with you and the onc nurses reacted quickly! I had a severe reaction to an IV antibiotic once. It was one I'd had many times before and I'd never had a problem with it. I remember my heart beating too fast and feeling really nauseous, then a bright red rash appeared on the palms of my hands, then my legs, and finally my entire body. By then I had 7 nurses working on me, slapping on an oxygen mask, giving me shots of 3 different drugs, holding cold compresses on my neck, etc. The nurse who started the IV kept saying, "I'm so sorry, baby, I'm so sorry," like it was her fault. When the drama was over, they told me it happens like that sometimes. Your body starts developing antibodies to the drug from the get-go, but in amounts too small to matter. Eventually, it gets to a tipping point and your body says, "no more!" It sounds like that's what happened to you with oxi - maybe your body always had a slight allergy to it and then it snowballed. Although, I guess it could have been a reaction to one of the pre-meds? Did anyone mention that?

What about Avastin? Could you do 5FU and Avastin until you have time to research some of the clinical trials? I remember an ASCO presentation on resuming Avastin even when it was previously prescribed and that line had failed. The study showed it was still effective in 2nd and 3rd line treatments. Anyway, I'll be sending good energy (and prayers) that your onc comes up with a brilliant new plan tomorrow.

xo,
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: No more oxaliplatin for me - now what?

Postby NWgirl » Tue Apr 15, 2014 11:51 am

Thanks everyone for the support. I doubt that there's a brilliant plan out there, but we'll see what we can scrape together.

Jaynee - I'll call you as soon as I'm done here, we have a lot to catch up on anyway.

No allergies for me, just a little runny nose; and yes, everything is blooming here. I usually have the most trouble if I'm digging in the dirt and/or raking up leaves - haven't done either lately.

Julie - my doctor are both aware of the "try Avastin again" thing - so I'm on it now. I've never had trouble with Avastin, it has been an easy drug for me to tolerate. I'm guessing he'll keep me on 5FU+Avastin for now - and hopefully we can look for a clinical trial. I recently talked to an oncologist @ Seattle Cancer Care Alliance - they have nothing to offer right now but there are a few other centers we can check with. We went over my tumor pathology not too long ago (me and my oncologist) - and there's nothing about it that points to other drugs that might be helpful - such as breast or lung drugs, etc. Not sure if I'm happy about that or not - I know some of those drugs are pretty brutal.

Yeah, yesterday sucked. I just remember thinking when my heart was going crazy, my stomach was doing flip flops and the room was going black - that that wasn't the way I wanted to die - it was just way too uncomfortable - not even painful per se, just extremely uncomfortable. Isn't that weird - the thoughts that go through your head? I kept thinking when you die you were supposed to be so whacked out on morphine that you were unconscious - I mean come on - where were the drugs????? :lol: I guess yesterday just wasn't my day to go - not just yet.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

tammylayne
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Joined: Fri Jul 16, 2010 9:24 am

Re: No more oxaliplatin for me - now what?

Postby tammylayne » Tue Apr 15, 2014 12:10 pm

"Not your day to go just yet"...NOT your day...not your week...NOT YOUR YEAR to go!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am so sorry to read this happened to you, I cannot imagine how scarey it must have been. BIG hugs to you...not even my normal gentle ones...I am talking bear hugs here... :shock:

Sending lots of good thoughts that your docs find another drug to try. I agree about changing protocols...you may not remember Cheryl - Westie66, but she came to this board because she had gallbladder cancer but they had her on CRC chemo as it had shown some success...my hope is one day they will make the same discoveries for other cancers, including ours.

Good luck with your appointment tomorrow.
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

Lee
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Re: No more oxaliplatin for me - now what?

Postby Lee » Tue Apr 15, 2014 12:17 pm

Belle,

I'm so sorry this happened to you and as others have said, glad that a friend was with you. That must have been very scary, especially when your heart is racing. Once I threw up during an oxi infusion, but nothing like what you experienced.

I hope (and pray) tomorrow's meeting with the Onc has options for you. Avastian might be a good choice. Know that you are in my thoughts and prayers that the Onc does indeed have a few tricks up his/her sleeve for you.

Take care,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Val*pal
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Location: Metro Detroit, Michigan

Re: No more oxaliplatin for me - now what?

Postby Val*pal » Tue Apr 15, 2014 5:10 pm

Belle, glad you are okay and survived the allergic reaction.

One thing is for certain - there is never a dull moment on this board. :)
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

gep
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Re: No more oxaliplatin for me - now what?

Postby gep » Tue Apr 15, 2014 5:16 pm

Belle,
I'm glad it happened to you this Spring, because I think there are a few immunotherapy trials out there that might be available and easier on you than oxi. My husband went through the same thing and it was scary to watch. I don't know whether there's a desensitization process that could help but maybe? I hope that there's something.
Thinking of you.
Gloria
Last edited by gep on Tue Apr 15, 2014 9:57 pm, edited 1 time in total.
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.

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CRguy
Posts: 10473
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Re: No more oxaliplatin for me - now what?

Postby CRguy » Tue Apr 15, 2014 5:58 pm

Belle,
I am swinging chickens.... to combat the sucknitude of this.
....AND while you reload, sending MEGA I- FIVES your way !!!!!
( ps: the alarm system has now been CR Macguyverized to my satisfaction ! )

Cheers and Harmony my friend
Cheers and Harmony

Always on some kind of Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: No more oxaliplatin for me - now what?

Postby Maia » Tue Apr 15, 2014 7:05 pm

gep wrote:I think there are a few immunotherapy trials out there that might be available and easier on you than oxi.


Yes. Sorry this happened to you. My friend had an oxali reaction after the 2nd round (Xelox); not so bad, because she was having oxali at %60. She'll be back to it in some weeks, after she had a 3 months break because of the WBR.
Belle... you can take other path, now, no later. I'm positive the universe will help you : ) ((hugs))

Badass
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Re: No more oxaliplatin for me - now what?

Postby Badass » Tue Apr 15, 2014 9:00 pm

Belle, what an ordeal!!!
SO glad you had a good friend with you to witness your experience and get you home safe and cozy.
Sending you many hugs!

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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Guinevere
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Location: NE TX

Re: No more oxaliplatin for me - now what?

Postby Guinevere » Tue Apr 15, 2014 9:06 pm

Belle,
I hate reading about what you went through but so very glad you came through it alright! You're so right about how scary it is and the weird things that run through your mind when you're thinking it's the end but not how you'd ever thought it would go! Been there a couple of times and always thankful for the quick actions of the medical professionals. I'm hoping that you're able to find a trial and I'm also hoping that you'll let Maria drive you tomorrow. That would probably ease everyone's minds.

I'll be thinking of you tomorrow. Hopefully, there will some kind of good news. Regorafenib was rough for me and didn't work but there are some who tolerate it and have had good results.

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14


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