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Old 10-07-2008, 11:53 AM   #1
Mary Jo
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Question....CoQ-10

Hello everyone,

I have a question about CoQ-10. I went to Walgreen's to purchase CoQ-10 today but when I got their I found it comes in all different mg. From 75 - 100 - 120. I purchased the 120 mg (boy that stuff isn't cheap) and thankfully, Nature's Bounty had it for "buy 1 get 1 free." Before I open it though I want to hear from you who take this as to how many mgs. I should be taking. If I got the wrong mg. I will return it and get the correct dosage.

Anything else you feel that is important to share about this supplement, please do.

Thank you,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 10-07-2008, 07:19 PM   #2
Becky
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I take 300 mg per day (100 mg pill with each meal) BUTTTTTTTT... you have to work up to it. I would start with 50 mg pills and take one with breakfast and do this for a couple of days. Then, after 5-6 days, take 2 50 mg pills per day (one with breakfast and another with lunch) and do that for 5-6 days, then take three a day (I think you get it). After you take 3 a day, you can then start upping the strength like take 100mg for breakfast and 50mg for lunch and 50mg for dinner and do that a few days etc.

Sometimes I only take 200 because I had a lunch meeting or something. My husband's cousin sells nutritional supplements and told me if I was going to take any supplement, it should be CoQ 10. I started during Herceptin (took 400mg then) and just never really scaled back much.

I hope this helps.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 10-07-2008, 07:33 PM   #3
Mary Jo
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Thanks Becky. Yes it does help BUT since I posted earlier today and hadn't heard anything I decided to open the 120 mg. bottle and took one with dinner. How about if I take a 120 mg. tablet every other day? Or every third day? After a few weeks of that, start working towards taking it daily? Could it harm me by taking a 120 mg. tablet already? I got 2 bottles of 120 mg. because they were buy one get one free. I really don't want to go buy anymore if this won't harm me HOWEVER if it could I will not take it the way I am.

Your opinions are appreciated.

Thank you,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 10-07-2008, 11:39 PM   #4
SoCalGal
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MJ- I take 400 mg daily at once with my morning protein shake. I take chewables from Douglas Labs - they are extremely expensive but I consider them vital. I never was told to start low and build up. Right out of the gate I started w/the 2 chews a day and it's been at least 18 mos. I am seen on a weekly basis by an MD/ PhD (pharmacology) at UCLA's integrative oncology dept so I feel this doc is VERY trustworthy. CoQ10 is very good for many things - especially protective for the heart. Thump thump.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 10-08-2008, 04:37 AM   #5
jhandley
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Smile Q10

hi.
I have done a lot of research on Q10. Whatever dose you take if you come off it, it is imp. to come off it gradually...as the heart doesn't like it if you come off suddenly. It also has a half life of 30 hours so best not to take it just before chemo... I stopped 3 days before to let the conc. drop to 1/4 ..it is a powerful antiox. and may interfere with chemo.....seems to be ok with herceptin.. i would love to see a proper study being done re. herceptin.
It is fat soluble so take with food....can cause insomnia in high doses..for me 300 mg is max. can cause mild nausea in high doses.

there is more....it normalises the bcl-2 gene which tells cells to die at the right time..so it is well worth the money!

cheers
jackie(down under)
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Old 10-08-2008, 12:48 PM   #6
mimiflower07
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great topic..did not realize that i was suppose to start slow so hey...i took 300mg at the get go and now am settled at 400mg! No looking back...but heres the catch. My muga was at 72% before chemo then 3 mths later 62, three mths later which was Aug my muga dropped to 55% *&%..it. I wondered if there was a mistake. So now i hope i can increase my score to beable to complete the herceptin. Also i'm schedules to have my oop oct 16 but the anestitist(sp?) once to see me regarding my muga scores. Is it possible that they will denie me my surgery with a 55% muga going into surgery. Perhaps they'll send me for another muga. Gee didn't think about this affecting my surgery! Any thoughts from you wise ones.
thanks...suzanne
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suzannne
dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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Old 10-08-2008, 05:46 PM   #7
Becky
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400mg of CoQ10 will give you the maximum heart benefit (there was a trial that pinpointed 390mg).

Exercise will help - especially brisk walking one hour a day for at least 5 days. I don't know if you have an exercise regimen or not.

My echo didn't change between chemo and herceptin (had them separately) but it did drop at the end from a start of 65 to an end of close to 50. In fact, I had 2 more to go when I hit 50 and we (my onc and I) just decided to finish them since it was close to the end and my major drop occured close up at the beginning.

You have not dropped 15% and you are not below 50 so self advocate until those things happen.

When did you start the CoQ 10?
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 10-09-2008, 09:42 AM   #8
Alyce
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supplements? Absolutely NO supplements?

I have always been a strong believer in preventative medicine and have taken coQ10, fish oil, protein shakes, glucosamin/chondroitin etc. During chemo I stopped all except for a multivitamin. Now I am on my last 3 months of herceptin and take femara. I can have calcium+D, multi-vitamin, Cosamin DS. At my last visit to my Onc. I asked about supplements. They absolutely do not want breast cancer patients to take supplements! The justification is that there has not been enough research to prove the good of supplements and there isn't enough to prove they don't feed cancer in some way. What a bummer! Part of me believes that there is no money in preventative health care so the medical world wants to ignore it. I am reading many of your posts and see that you are taking supplements. Is this with Dr.s approval? I am very curious about what if anything your Onc. has suggested. We are about 95% vegetarian so I hate giving up the protein shakes, but if there is a valid reason I will not go against my Onc. advice.
I'd really like to hear from all of you who are interested in the dietary piece of recovery.
Alyce
2008 - lumpectomy
Her2 positive stage 1
Chemo, radiation
one year Heceptin
Femara (no side effects! I swim 5 times a week)
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Old 10-09-2008, 09:08 PM   #9
Barbara2
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My onc is aware of the supplements I take and has no problem with them: Co-Q10, Turmeric, multivitamin, calcium.

An opinion from another onc (Dr. Pegram) regarding supplements:

"If you have a good balanced diet, you shouldn’t need them. But if you eat like I do, then you probably should take a one a day. Half of my patients admit to taking supplements; the other half just take them and don’t tell me! Everybody’s taking something. They’re all taking different things so it’s impossible to study. If you take them in moderation, it’s probably not going to hurt anything, but there’s no data showing that any of the supplements actually work in breast cancer. So the best thing, I think, is a healthy diet because if you do that then you shouldn’t need any supplements."
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 10-10-2008, 01:16 PM   #10
Vic
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CoQ-10 and other supplements

It's always great to hear what others are taking to maintain and improve their health. I thought I was taking a decent amount and my CoQ-10 is low compared with yours.

Since my cholesterol is a bit high, I've been taking Solaray (love this brand!) of Red Yeast Rice Plus CoQ-10 twice a day and I see that there's only 30 mg. of CoQ-10 in each capsule. So, maybe I'd better add a separate one to up the dose a bit.

As for my other supplements, I take NutriCology's Multi-Vi-Min without copper & iron, Vit. D-3 (2,000 IU), MSM, Turmeric, RXOmega-3 Factors (EPA 400 mg/DHA 200 mg), and Cal-Mag Citrate.

Big virtual hugs,

Vicki Z
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Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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Old 10-10-2008, 09:48 PM   #11
donocco5w4
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In the 1990's there was a report of 4 metastatic breast cancer patients taking 390mg Q 10 daily (they were also on chemo) and the mets disappeared. I dont know what to make of this but who knows?. Ill try to find the pharmacy ournal I read this in so I can give an exact reference. Apparently q10 decreases the action of the anti-apoptosis BCL-2 protein and allows predominance of the pro-apoptosis BAX protein.

Paul
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