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Old 03-09-2011, 08:29 PM   #1
Jean
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Wanted to share this....

Like many of you I take supplements each day and have been doing so for years. This week I added a new supplement to my routine. I had heard that Niacin was helpful in raising the good HDL cholesterol. Since I am taking an AI and we know that AI can increase the LDL level (the bad cholesterol).... so I purchased Niacin. Day one I took the Niacin supplement after my breakfast and left to meet a client. Within the hour
I had the worst hot flash (I have not been experiencing any hot flashes while on Femara) not one!!!! This felt like a burning on skin around my neck and down my arms....no sweating...but a severe burning sensation running up and around my neck and my ears began to tingle like needles. I thought I would explode and had to remain calm as I was in a meeting with a client.
After about an hour passed it began to subside.
But I was pretty shaken up by it. My thoughts were if I continue getting this I will be in serious trouble and it flet just as if a flame was near my skin. I did not think much more about it. Then today I took my vit. in the morning...went into my office and I was giving a meeting and all of a sudden Bam....I felt like both my arms would fall off from the burning heat... It .traveled to my neck area and then up to my ears....I thought my head would explode. It felt like scorching flames burning my skin, again no sweating at all just this dry flaming burning sensation. I don't know how I got through my delivery at the meeting...but this time I knew this is not an ordinary reaction for me. Again
it went away after almost 2 hrs of constant burning of my skin. I called the health food store where I purchased my vit. and the owner informed that in fact
Niacin can cause this. So - I quickly thought about many of our sisters who are suffering from hot flashes and began to wonder if you are taking Niacin or if your MV has a high element of it? That any woman who is experiencing normal hot flashes should definitely stay away from Niacin supplement.

jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-09-2011, 08:40 PM   #2
wlproctor
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Re: Wanted to share this....

good to know!
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Diagnosed 3/13/2009 from FNA, 39 years old.
4/09 lumpectomy with SNB, did not obtain clear margins.
5/09 - BMX with full axillary dissection on right side.
Final pathology report: 4cm+ high grade DCIS tumor with micro-invasive idc, 2/32 lymph nodes, ER/PR-, Her2+++, Stage IIa

7/09 - started TCH, finished 10/09
11/09 - 9 more months of Herceptin, finished 7/10

Reconstruction scheduled for Jan 2011

Expander placement completed - January 2011
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Old 03-10-2011, 05:04 PM   #3
Laurel
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Re: Wanted to share this....

Yeah, Jean, that's called the niacin flush. I have avoided it because I have worried it would be too much with my Femara hot flashes. Sounds like my instincts were correct. Thanks for the post. I understand a downward adjustment of the dosage can improve the flush as you acclimate to it. My cholesterol is borderline high. I recently read that studies indicate this is quite common for the AIs and that it does not seem to increase our propensity for CAD. Hoping they are correct!
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 03-10-2011, 08:42 PM   #4
barbarahart
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Re: Wanted to share this....

My husband has taken Niacin to raise his HDL, prescribed by his cardiologist. He takes it at night for that reason. It does get better, but the flashes come and go. It has helped his HDL and the doctor insists her take it.
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Old 03-11-2011, 12:43 AM   #5
Adriana Mangus
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Re: Wanted to share this....

Just wanted to share this...

my neighbor, also with a cholesterol problem, was placed on niacin, he couldn't tolerate it, and had to stop taking it. Hot flashes, nausea and even vomiting. Nasty effects.

Now I know to stay away from it.


Much Love to you all,

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 03-11-2011, 08:58 AM   #6
suzan w
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Re: Wanted to share this....

had the same experience with niacin a few years ago. Stopped taking it....but the first time, with that fiery attack I thought for sure it was the end of me!!!
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 03-12-2011, 08:26 AM   #7
Lori R
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Re: Wanted to share this....

Niacin must be powerful stuff.

My sister has high cholesterol and was prescribed niacin a # of years ago. We were at lunch and I could literally see a line of red moving up her face. Freaked me out. I thought for sure she was going to pass out right there at the table.

She quickly changed from niacin to another medication. That was very frightening.

Lori
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2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 03-12-2011, 04:56 PM   #8
Chelee
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Re: Wanted to share this....

Jean,
Yrs ago I had a friend I worked with. She walked up to me and was red from her upper chest to her face. I found out she was taking Niacin. She told me she had just started taking it and that was going to be the last time. It scared her! I have to say...she really looked bad...I was really concerned about her. They call it the niacin flush...they say it's not harmful...but I know my friend said it made her very uncomfortable to say the least.

So sorry to hear you went through that, but I'm glad you posted that here because I'm certain there are many women that have never heard of this before. It's nice to have a warning with something like this. Especially when most all of us on this board take all kinds of different supplements. This way they get the heads up! Thanks for sharing your experience as misrable as it must of been.

Chelee
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Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 03-12-2011, 08:11 PM   #9
Jackie07
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Re: Wanted to share this....

Hubby has been prescribed Niaspan since his stents procedure 9 years ago. He's been instructed to take an aspirin 30 minutes before taking it. Even with the aspirin, he still complains sometimes about similar side effect. He takes the pill late at night before bedtime.

http://en.wikipedia.org/wiki/Niaspan
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Old 03-13-2011, 09:15 AM   #10
sarah
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Re: Wanted to share this....

Hello,
Yes Niacin can "burn" and make you itchy but you will get used to it. interestingly I tried it recently for the same reason but it was nicianmide and I found I didn't have the reaction. Maybe speak to the health food store about a small dosage and if there is one that has a lower effect. Taking at night sounds a good idea also. take with lots of water.
good luck
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