Cold Agglutinins

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BrownBagger
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Location: Central NYS

Cold Agglutinins

Postby BrownBagger » Tue Nov 11, 2014 9:54 am

Anybody else have this problem? Yesterday at chemo, they had to send my labs out to another lab to warm them up so they could be analyzed. Everything looked good, lab-wise, and my chemo session continued after about a 2-hour delay. Next cycle I'm getting the blood drawn the day before my infusion.

I don't even know what it means--what the implications. My onc didn't believe it, and had them make another draw, just to be sure. The lab said it's a relatively mild case, whatever that means.

So, I don't know what to think, other than my lab work all looks good and I feel great, chemo or no chemo.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

FatBob2012
Posts: 198
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Facebook Username: arthur.h.baker1
Location: Texas, USA

Re: Cold Agglutinins

Postby FatBob2012 » Tue Nov 11, 2014 11:03 am

Never heard of this one, except to wonder if the time between draw and delivery to lab allowed sample to substantially chill : www.medilexicon.com/medicaldictionary.php?t=1749. Anyway, Glad it all worked out in the end.

Best wishes,
Art
Stage IV 5/2012
FOLFOX + Avastin
Liver res 7/2012
Chemo 9/2012
NED 10/2012
CEA @ 5 mets lung&liver 12/13
Liver spot 3.7 x 2.5 cm found January 2014
Cystectomy 2/14
3/14 FOLFIRI 8 treatments
10/14 CEA 3 with stable METS
12/14 CEA 51 :-((

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BrownBagger
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Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Cold Agglutinins

Postby BrownBagger » Tue Nov 11, 2014 11:15 am

Yeah, 82 rounds of chemo and I've never had to skip or lower a dose. Didn't really want to start.

I didn't have a chance to discuss this with my onc yesterday, and the nurse wasn't really into trying to explain the implications to me, other than it takes longer to get the lab results back. I did email my onc at Sloan Kettering just to let her know, so perhaps I can get some information out of her before I see my local guy in two weeks. I Googled it and tried to understand the summaries, but that crap just scares me. No fan of path reports, either.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Cold Agglutinins

Postby dianetavegia » Tue Nov 11, 2014 12:55 pm

I'd sure want an answer about this. I'd heard the term but had no idea what it meant. Wonder if it's a side effect of chemo.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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dianetavegia
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Re: Cold Agglutinins

Postby dianetavegia » Tue Nov 11, 2014 1:00 pm

Found this: Cold agglutinin disease may be managed successfully using protective measures (clothing) alone in most cases. Special protective clothing is sometimes necessary in extreme cases. Therapy is directed at serious symptoms and the underlying disorder, if any is found.

Keep in mind that the idiopathic variety of cold agglutinin disease is generally a benign disorder with prolonged survival and spontaneous exacerbations and remissions in the course of the disease. Acute postinfectious syndromes usually resolve spontaneously. Anemia is generally mild.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sometimes my onc's office is so cold I think I'll freeze! I've started dressing for my appointments not for the weather but for his office temp. My visit in Oct. was an 80° day and I wore a sweater with a turtle neck underneath!

Also, I remember being sent home from chemo one week 5 plus years ago because the office lab had a machine shooting off bad numbers and they wouldn't give chemo without knowing white counts, platelets, etc.
Last edited by dianetavegia on Tue Nov 11, 2014 1:02 pm, edited 1 time in total.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Cold Agglutinins

Postby KWT » Tue Nov 11, 2014 1:01 pm

BrownBagger wrote:Yeah, 82 rounds of chemo and I've never had to skip or lower a dose. Didn't really want to start..

That has to be some kind of record or something.

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BrownBagger
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Location: Central NYS

Re: Cold Agglutinins

Postby BrownBagger » Tue Nov 11, 2014 3:46 pm

It is a boatload of chemo, but others around here have done more.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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kbedz
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Re: Cold Agglutinins

Postby kbedz » Tue Nov 11, 2014 3:58 pm

82 rounds? Just wow. Seriously.

So, this "cold agglutinins" can be treated with clothing?
Kristin Bednarz
Lubbock, Texas

DX 04/13
1 tumor, 1 node
stage 3c
surgery 4/13
24 chemo oxy/5fu completed 11/2013
radiation 11/13
completed radiation 2/14
scans clear 5/14
scans clear 9/14

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Voxx66
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Facebook Username: Michael Void Ward

Re: Cold Agglutinins

Postby Voxx66 » Tue Nov 11, 2014 4:07 pm

It's a constant learning experience. I'd never heard of this. Hope it isn't a major issue for you.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

Marian1961
Posts: 278
Joined: Wed Sep 18, 2013 10:44 am

Re: Cold Agglutinins

Postby Marian1961 » Tue Nov 11, 2014 4:30 pm

I've never heard of this and still not sure I get it! I hope it's out cause further trouble for you.
Caregiver 53 brother
Dx 09/13 stage iv, met liver
Emergency stoma
? Chemo 09/30

wifenurse
Posts: 164
Joined: Tue Feb 01, 2011 4:05 pm

Re: Cold Agglutinins

Postby wifenurse » Tue Nov 18, 2014 5:17 pm

I work in the world of cardiac surgery and we routinely check cold agglutins on all of our heart surgery patients. The way it has been explained to me is that you are either positive or negative for cold agglutins and if you are positive then it is usually in a ratio such as 1:4, 1:16, etc. Cold agglutins mean you have antibodies that affect the red blood cells at different temperatures. The higher your ratio, the more likely your blood will clot at cold temperatures. In Cardiac Surgery for an aortic aneurysm repair, we will cool the body to 19 degrees celsius - somewhere around 70 degrees F. If your agglutins are positive, the patient's blood will literally clot in front of the surgeons eyes. One surgeon described it to me as liquid turns to sand. Our perfusionist that run the heart/lung bypass machine pay close attention to the cold agglutins and we have to adjust the body temperature and how we do surgery if the ratio is high. It has ruled some patients out for surgery (ratios like 1:524). One patient that I remember distinctly was worked up for Lymphoma as you can find higher cold agglutins in those patients. It was one of those 1:500 ish ratios. We actually did a plasma exchange for that patient to bring the agglutins down enough that we could safely do heart surgery. Positive cold agglutins are fairly common, it is just the high ratio that we have to watch out for. If you are positive, and they are giving you some type of cold chemo or blood - it may cause problems. In my research I remember reading that for folks with high levels, sometimes their fingers will turn blue in cold temperatures, just because their blood clots. Hope this helps!
Christy
Wife of Jayson, diagnosed Oct 2009 CRC - age 39
Radiation & Chemotherapy Nov-Dec 2009
Colon & Liver resection Feb 2010 - Stage IV
Folfox + Avastin X 12 treatments - finished Aug 2010
NED 10/10, 1/11, 7/11, & 12/11

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juliej
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Re: Cold Agglutinins

Postby juliej » Tue Nov 18, 2014 5:50 pm

Never had that happen, but the MSK phlebotomists have issues with my hands/arms being too cold for a blood draw during the winter. They have me hold a hot pack or put my arm under hot running water and then do the draw. I walk to 53rd so I'm pretty chilled by the time I get there if it's a cold day. Maybe I need to buy a warmer coat.

Hopefully, it's just one of the many weird things cancer patients learn about that turn out to be nothing. By the way, I'm a fan of having blood drawn the day before an infusion whenever possible. It just makes everything go faster.
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

skypup
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Joined: Mon Dec 17, 2012 12:12 pm

Re: Cold Agglutinins

Postby skypup » Wed Nov 19, 2014 5:00 am

BB, are you still on Folfiri plus Erbitux? I've been put on Erbitux alone now, which is a walk in the park except for the crocodile skin. I'm wondering whether that is standard or not...

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BrownBagger
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Location: Central NYS

Re: Cold Agglutinins

Postby BrownBagger » Wed Nov 19, 2014 10:07 am

Skypup wrote:BB, are you still on Folfiri plus Erbitux? I've been put on Erbitux alone now, which is a walk in the park except for the crocodile skin. I'm wondering whether that is standard or not...


Thanks, wife nurse, for that excellent primer on my "condition."

No idea if it's going to be a big deal or not. Apparently it is side effect of chemo, but my doc's PA didn't believe the test result, based on my other data, etc. They drew more blood with the same result. So, she's a little confused. It may be an anomy--as Julie says--stuff happens to us that doesn't always make sense.

Yes, Skypup, I'm still on Erbitux. Not quite sure what you mean by "crocodile skin" but it it's dry skin you're referring to, then I get that in spades, especially in the winter. And this one is looking like another doozy. I just load up with creams and ointments and keep my hands in surgical gloves when they get too dried out. I'm also on Xeloda, so my finger tips have lots of little, painful cuts and cracks--especially when they get dry. And, I have to wear the gloves when cooking, since things like salt, lemon juice and hot sauce can really get the colorful language going. Spices up the kitchen.

The best stuff I've found for my face is Aveno baby butt cream. It stays moist but not greasy. Bag Balm pretty much everywhere else. At night I just load up with whatever's available and try not to move around too much before it soaks in.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.


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