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Old 11-26-2009, 03:14 AM   #1
Ellie F
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Beta Glucan and herceptin

I have read on the board a while ago and checked with my onc about beta glucan needing to be activated for herceptin to be effective (pten pathway.)

I believe it is found in mushrooms particularly oriental ones.

Are there any other natural sources or do you need supplements to obtain sufficient amounts?

Ellie
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Old 11-28-2009, 06:36 AM   #2
Becky
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Re: Beta Glucan and herceptin

Just for this reason, I took maitake mushroom supplements. I had a specific regime. I took 9 capsules per day (545mg standardized) for the week during Herceptin (3 days before, day of, 3 days after). During the rest of the time I took 4 per day. I still take 4 per day now.

Oatmeal also contains beta glucan but you just need to take enough to make a difference. The dose was my own idea. I am still here so who knows what I ended up doing right?
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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 14 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 11-28-2009, 07:50 AM   #3
Ellie F
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Re: Beta Glucan and herceptin

Thanks becky
i think it was a post from you that brought beta glucan to my notice. I had remembered maitake mushroom supplements but have had a lot of difficulty getting it here in England. I am now hoping to import some from the states.
Is there any particular brand you think is good?
Thanks Ellie
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Old 11-28-2009, 01:08 PM   #4
Becky
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Re: Beta Glucan and herceptin

I get mine from viable herbal solutions online. They are located in Morrisville, PA.

http://www.viable-herbal.com/
__________________
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 14 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 11-30-2009, 10:30 AM   #5
Leslie304
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Re: Beta Glucan and herceptin

Hi ladies - I met with an integrative medicine doc who has 'prescribed' Maitake D-fraction extract. 53 drops twice per day, every day. She says the research looks promising! She strongly urged me NOT to take antioxidants when treatment is done. Evidence shows over consumption of them can proliferate cancer cells!
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 11-30-2009, 12:01 PM   #6
Ellie F
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Re: Beta Glucan and herceptin

Hi Leslie
Can I just clarify what you meant by antioxidents? Do you mean vitamin and mineral supplements?

Thanks
Ellie
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Old 11-30-2009, 12:34 PM   #7
Leslie304
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Re: Beta Glucan and herceptin

Hi Ellie,

Yes, any supplement that is considered antioxidant such as Vit C. She says eating foods rich in antioxidants is fine, but do not supplement in pill or liquid form and don't juice! She says we should not try to achieve moe than 100% of any nutrient and that's exactly what supplements do, is exceed the 100% RDA. I was going to start taking antioxidants as soon as my treatment is done. Now I will consult with a naturapathic doctor as well and see if I can decide who makes more sense.

Leslie
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 11-30-2009, 12:36 PM   #8
Leslie304
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Re: Beta Glucan and herceptin

Oh and, the Maitake D-Fraction is not an rx so she didn't really 'prescribe' but recommended.
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 11-30-2009, 01:39 PM   #9
Ellie F
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Re: Beta Glucan and herceptin

Thanks Leslie
The juicing is interesting. I often do an occasional juice when I get days when I have not managed to get any fruit and veg. Guess it's people who juice all the time that may have the problem
Ellie
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Old 02-15-2010, 05:57 PM   #10
angied808
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Re: Beta Glucan and herceptin

i've never heard of this - where can i find more info? i've done 7 herceptin tx but have quite a few more to go.
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Old 02-18-2010, 08:11 AM   #11
TanyaRD
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Re: Beta Glucan and herceptin

Here are a few studies I found. One is specific to monoclonal treatments, like Herceptin and Rituxan. There are 3 listed here. All of them are very early and small studies so we must use some caution in applying results to the entire population. The results in beta-glucan / anti-cancer research are impressive, however, and more research needs to be done in this area.

http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract[back]
http://www.ncbi.nlm.nih.gov/pubmed/10529508[back] http://www.ncbi.nlm.nih.gov/pubmed/17161824[back]
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Old 02-19-2010, 11:26 AM   #12
ElaineM
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Wink Re: Beta Glucan and herceptin

Thanks Tanya. I forwarded the studies to my naturopath. I have taken Maitake with Reishi and Shitake every day for 11 years. I also cook with shitake and the other mushrooms when I can get them. I never needed shots for my blood counts, so I think the mushrooms with beta glucan help. I read that even common white mushrooms and other common mushrooms are healthier than most people think, so I use them for cooking too.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
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Old 03-30-2010, 08:19 AM   #13
BMW2
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Re: Beta Glucan and herceptin

Hi: I am taking Host Defense Mushroom capsules (these are a mixture of various mushrooms) and I noticed that they contain cordyceps extract (a type of mushroom). I recently read on Herbs 2000.com website that women who have had breast cancer should not be taking cordyceps. Has anyone else heard about this?

Thanks
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Old 03-30-2010, 10:01 AM   #14
Becky
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Re: Beta Glucan and herceptin

Although a great herb for boosting immune function, apparently it is not good for hormone positive breast cancer. Not sure if you have hormone negative.
__________________
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 14 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 03-30-2010, 10:41 AM   #15
TanyaRD
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Re: Beta Glucan and herceptin

This is on the Memorial Sloan-Kettering Herb site and mentions one animal study with possible increased progesterone production. See the summary below followed by the link.

Mechanism of Action

Cordyceps stimulates the number of T helper cells, prolongs the survival of lymphocytes, enhances TNF-alpha and interleukin 1 production, and increases the activity of natural killer cells in cultured rat Kupffer cells (3). Enhanced proliferation of erythroid progenitor cell in the bone marrow of mice is also shown (8). One study suggests that cordyceps can stimulate progesterone production in animal cells (5). Another study shows that cordyceps may be effective against tumor celIs by down-regulating MHC class II antigen expression (7). In addition, anecdotal data suggest reduction of cyclosporin and aminoglycoside-induced renal toxicity, although the mechanism of action is not known (4).

http://www.mskcc.org/mskcc/html/69193.cfm
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Old 03-30-2010, 04:03 PM   #16
Rich66
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Re: Beta Glucan and herceptin

Does the integrative doc point to any study regarding antioxidant supplementation? What I can find doesn't seem to support that notion. Seems to be issues regarding certain supplements with certain treatments though.
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Old 05-21-2010, 12:41 AM   #17
pibikay
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Re: Beta Glucan and herceptin

Hi Tanya
What is a natural source dorBeta Glucan.My wife is allergic to mushrooms
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Old 05-21-2010, 05:17 AM   #18
TanyaRD
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Re: Beta Glucan and herceptin

PibiKay,
Bakers yeast, oats and barley are also considered sources of beta-glucan. Most studies that I am aware of are based on the mushroom source. I did a quick pub-med search and did find some very positive (albeit small & animal based) studies with yeast-derived beta-glucans.
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Old 02-19-2011, 06:41 PM   #19
Gift
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Re: Beta Glucan and herceptin

Pibikay,

I've just got BetaGlucan from my "supplement" doctor. It's in soft gel form and made from black yeast (if I remember it right. I'm in hospital for Chemo taking, will look at its package once back home). This product is from Japan.

Hope this helps
Gift
__________________
dx July 2010 with ER 80% PR - Her2 +++, 7 cm tumor
3 rounds AC (stop after round 3 since the tumor didn't shrink)
3 rounds Herceptin until tumor gets smaller to 4 cm
Lumpectomy on 12 Dec 2010
TCH x 4 (6 are planned but low WBC), 35 hits Radiation, and one year Herceptin
Jan 2014: met to bladder and then liver and lungs
Jan 2014: Operation to remove 3 cm. tumor from bladder
May 2014: started Taxotexe & Tratuzumap (either Herceptin or Herculis, being a part of Mylan research)
Oct 2014, 3: finished 8 cycles of Taxotere & Tratuzumap
Oct 2014, 24: only Tratuzumap every 3 weeks
Jul 2015: progress in bladder - operation and keep on Tratuzumap
Dec 2015: progress in bladder still & met to ovaries
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Old 02-20-2011, 12:19 PM   #20
ElaineM
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Wink Re: Beta Glucan and herceptin

I did a search on Maitake mushrooms and found alot of interesting articles that might be interesting to those who want to know more about mushrooms.
http://www.ncbi.nlm.nih.gov/pubmed?t...ke%20mushrooms
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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