to those who have quit or reduced pre-med steroids

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midlifemom
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to those who have quit or reduced pre-med steroids

Postby midlifemom » Sun Nov 08, 2015 10:09 pm

Hi all,
I know many folks have stopped the pre-chemo steroids due to sleep issues.
My problem is weight gain. I am not as active on chemo (9 months on folfiri now) so I certainly understand that impacts my weight gain, butt I'm guessing the steroids also contribute.
For those that stopped or decreased the steroids, did it make your nausea much worse? Or what other side effects worsened as a result?
Thanks.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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CRguy
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Re: to those who have quit or reduced pre-med steroids

Postby CRguy » Sun Nov 08, 2015 11:08 pm

Oh Me ... Me ... ME !!!!!! :shock:

I am the poster child for reducing dexamethasone dosage prior to chemo ...
.....I HATED IT !!!!

BUTT I had NO issues with allergic reaction or nausea ( I did 12 cycles of FOLFOX ... cannot comment of FullFury :twisted: )
... and you can read my history here at your leisure ... :mrgreen:
BUTT I ended up on just 2 mg Dex the day of chemo and nothing else after ... I hated the stuff

BUTT that is just my story, so if there are other reasons why there should be MORE Dex
.... talk to your own Docs and work out a plan which works for YOU !

I tried a slow decrease with my Onc's approval
The docs and nurses have a GOOD plan : " Easier to PREVENT a problem than to treat it after it shows up ! "
BUTT ... you have to be sure that plan is the best plan for YOU.

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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wwroam
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Re: to those who have quit or reduced pre-med steroids

Postby wwroam » Sun Nov 08, 2015 11:28 pm

After a couple of rounds of chemo I asked for a reduction in dosage of dex.
When my SO started chemo she had a pre-med of dex and Emend with Kytril afterwards. Seemed to work OK.
After the 6th round some bright spark decided to check her bg levels after dex and saline drip. She read at 16.5. I'm the diabetic and I never go over 8. That was the last dex she ever got. Rounds 10-14 were without the oxi but 15 and 16 she was back on oxi ( without dex). I can't really say that she has suffered for it's absence. She's eating fairly well and stays hydrated.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Sams wife
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Joined: Sun Jan 11, 2015 2:49 pm

Re: to those who have quit or reduced pre-med steroids

Postby Sams wife » Sun Nov 08, 2015 11:52 pm

wwroam wrote:After a couple of rounds of chemo I asked for a reduction in dosage of dex.
When my SO started chemo she had a pre-med of dex and Emend with Kytril afterwards. Seemed to work OK.
After the 6th round some bright spark decided to check her bg levels after dex and saline drip. She read at 16.5. I'm the diabetic and I never go over 8. That was the last dex she ever got. Rounds 10-14 were without the oxi but 15 and 16 she was back on oxi ( without dex). I can't really say that she has suffered for it's absence. She's eating fairly well and stays hydrated.



What are bg levels. If you can tell me?
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

rp1954
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Joined: Mon Jun 13, 2011 1:13 am

Re: to those who have quit or reduced pre-med steroids

Postby rp1954 » Mon Nov 09, 2015 12:55 am

One of the Canadian agencies should have some data on least a dozen+ patients that used IV vitamin C and K3 alongside their Folfiri programs, collected for submission by her clinic, as mentioned by Luvinlife elsewhere.

Luvinlife used 1-2 weekly IV vitamin C+K3 infusions to extend her tolerance of Folfiri for an extra ~3 yrs instead of quitting Folfiri, and was outspoken about her improved QoL and health. She eventually did quit Folfiri, sounded in part as chemo fatigue, WBC and resistance, and departed about 14 months later. To the extent steroids and antihistamines are used to overcome histamine mediated reactions to Folfiri (and -oxi), I'd expect IV vitamin C to reduce steroid and antihistamine requirements. Unlike 'roids and benadryl, vitamin C doesn't temporarily interfere or block histamine, C helps destroy excess histamine, quickly stopping many allergic reaction sequences, and reduces the excess histamine generation due to HIF-1a and inflammation. IV vitamin C can penetrate anaerobic, HIF-1a laden tissues that absorb C almost like "sugar", like a trojan component for tumor tissue treatment.

Looking back at the stories of some of our friends that had to drop Folfox due to anaphylactic reactions, they mentioned factors, like LDH, CEA levels, or Kras mutant, that make me think they probably had substantial histamine buildup that helped derail their treatments.

It would be very interesting if someone could track down the Canadian agency that got these IV C - Folfiri records. I suspect little acute followup has been done with the data, because there is so little general medical understanding of the vitamin C (hi)story, or support.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Ron50
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Joined: Fri Feb 10, 2006 7:04 pm

Re: to those who have quit or reduced pre-med steroids

Postby Ron50 » Mon Nov 09, 2015 7:08 am

It is a very long time ago but I clearly remember the dex injection before chemo. It felt like my eyelids were roller doors. I'd shut them then up they would roll. I only had two shots and declined any further.. Un fortunately for me long after cancer I developed an unknown auto -immune disease of the kidneys. My then nephrologist thought it was Minimal change disease. It usually reacts to steroids. He put me on 75 mg daily of prednisone for 18 months It took another six months of taper before I started to make my own cortisol again. Needless to say It was not minimal change disease. I can honestly say that prednisone is the worst drug that I have been on. I am not sure how I or those around me survived it. Steroids are not nice. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: to those who have quit or reduced pre-med steroids

Postby jdepp » Mon Nov 09, 2015 11:05 am

I stopped taking decadron (in any amount) years ago. For me it does much more harm than good.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

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juliej
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Re: to those who have quit or reduced pre-med steroids

Postby juliej » Mon Nov 09, 2015 12:18 pm

I dropped steroids after the first couple of infusions. They just made me feel awful -- more nauseous, not less. I was better off handling the nausea with ginger and Goldfish crackers. I would ask about cutting them down, not dropping them completely, until you know how your body will react.
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

MissMolly
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Location: Portland, Ore

Re: to those who have quit or reduced pre-med steroids

Postby MissMolly » Mon Nov 09, 2015 12:33 pm

A word to the wise: Use of glucocorticosteroids on a long-term basis can result in suppression of the pituitary gland and the communication feedback loop between the pituitary gland and the adrenal gland. The result is a serious condition called "secondary adrenal insufficiency." The adrenal glands fail to produce adequate cortisol, a life essential hormone.

I have adrenal insufficiency due to use of long-standing use of prednisone for an auto-immune condition (Lupus). I feel like I traded on serious condition (Lupus) for another serious condition (adrenal insufficiency). Adrenal insufficiency is no walk in the park. Most days I feel like I have a bad case of the flu X 1000.

Taking a glucocorticosteroid, such as dexamethasone or prednisone, is usually a balance of its potential benefit vs. its potential side-effect(s). It is always wise to take as low a dose of a glucocorticosteroid as is needed to achieve the desired benefit - whether that be benefit be reduced nausea, reduced inflammation, et. al.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: to those who have quit or reduced pre-med steroids

Postby Ron50 » Mon Nov 09, 2015 4:10 pm

Hugs Miss molly I am sorry that you have had to go thru cancer and the terrible drama of having your own immune system rebel against you. Even more hugs for having lived through the steroid cycle. Did steroids make me feel better? For about three days I felt on top of the world , then I descended into hell. It was touch and go for me as to whether my adrenal glands would kick start again. Fortunately they did ,I am sorry that yours did not. I now take cyclosporine twice a day. I have gone from losing 7 grams of protein a day thru my urine to around .7 of a gram. I will be on cyc till it stops working or I develop too much collateral damage in the form of skin cancers. It seems dreadfully unfair to survive cancer only to face equally life threatening problems. I wish you well, hugs again ,Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo


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