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03-04-2008, 08:50 AM
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#1
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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Maitake extract
how many of us are taking this extract? Finished reading on this and it does sound useful for balance. Perhaps there is a connection to this plant and decrease recur.
Just more thoughts
suzanne
__________________
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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03-04-2008, 11:07 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Ohio
Posts: 212
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I took maitake mushroom pills for about a year after I finished treatment--my sister had sent me information about the potential benefits of these mushrooms so I thought it was worth a try. I'm happy to say that I'm still cancer-free after six years, so there might be something to them. I know my friend, Michele U. from Nebraska was taking them also, and she's doing fine after almost 5 years. Can't say it was the maitake mushrooms that did the trick, but it may have helped. I also took milk thistle and Co10 for a while, too.
__________________
Audrey
diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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03-04-2008, 12:46 PM
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#3
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Member
Join Date: Jun 2007
Posts: 10
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Hello to all. I also have taken a maitake/shitake mushroom supplement, for about 3 mos. now. Last time at the oncologist, my blood counts were the best since treatment ended (2/28/06), tumor markers lowest yet. Like Audrey, I also take CoQ10 and milk thistle. I was diagnosed in July of 2005, ended Herceptin in 2006, and am NED!!!! Thanks to each and every one of you for all the support and info I read here.
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03-04-2008, 06:10 PM
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#4
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Senior Member
Join Date: Jan 2008
Posts: 305
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I take a shitake rich bran formula but after seeing this post, I did some reading on Maitake and decided to add them as well.
It would be interesting to have people that are at least 5 years out say what supplements (if any) they took and what their current status is.
Audrey - I feel encouraged When I see you still Ned after 6 years you had almost as many positive nodes as me. I get so sick of the oncologist telling me I am high risk. I plan to prove her wrong.
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03-05-2008, 08:21 AM
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#5
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Ruth took maitake and reishi as well in a blended extract capsule formula. EIther that or the Astragalus or the combo seemed to have a marked affect on WBC counts. We've seen it happen twice as she went off during rads, WBC counts dropped, she went back on, and counts are UP again. Coincidence??
TRS
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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03-05-2008, 10:23 AM
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#6
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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maitake extract
now can we take this supp while on herceptin?
thanks for all the responses
suzanne
__________________
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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03-05-2008, 11:37 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Dear Mimi
You can take Maitake during Herceptin alone or Herceptin/Tamoxifen. This is the reason I began using maitake and I took larger quantities during Herceptin because.... maitake contains the active beta glucan. Beta glucan helps the inactive form of PTEN become active (and you can never know with today's technology which form you have). Herceptin only minimally works if you have the inactive form so I took maitake on the off chance I did have the inactive form and that it would help activate PTEN in me (per chance).
__________________
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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03-05-2008, 12:53 PM
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#8
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Member
Join Date: Jun 2007
Posts: 10
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What is PTEN? I'm still learning all this....
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03-05-2008, 01:00 PM
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#9
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Senior Member
Join Date: Jun 2006
Posts: 153
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I actually take reishi and turkey tails which my doctor prescribed for me. It also has milkthistle and grape seed in it. He sent it over to a special pharmacists who mixed it into geletin capsules.
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03-06-2008, 11:50 AM
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#10
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Becky, wow, a win/win, helps WBC and possibly helps treatment, I hadn't read of this!
Penelope, did your onc give you this during chemo?
Many oncologists are against supplements during chemo because they just don't know if it will help or hinder. Our onc did the same. Ruth made the choice to take the mushroom extracts and astragalus despite this because we wanted to address the WBC problem that showed itself immediately after the 1st treatment. Her response to chemo continued to be very positive throughout treament, so either it helped or at least probably didn't get in the way. We 'fessed up to the onc. when we saw her on the 2nd treatment and she said "Go ahead and take what you are taking, you have had one of the most dramatic responses I've seen this early in treatment and it's obviously not hurting you"
Ruth avoided the supplements during a six day window around the actual treatment.
TRS
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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03-10-2008, 07:18 AM
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#11
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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Becky..Maitake dosage
or anyone just wondering what dosage is best when you start on this supp? I bought the Shiitake & Maitake blend which has a 100mg of each in a cap.
thanks. suzanne
__________________
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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03-10-2008, 07:27 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I would start with the dose the bottle says or even half that much just to see how it agrees with you and then go from there. My maitake supplement (from Viable Herbal Solutions (online)) is 545mg per cap and says to take 2-3 caps two or three times per day (with meals). The day before, the day of and the day after Herceptin I would take the full 9 caps then cut back to 4-6 per day. Now I just take 2 per day. But in ramping up and down, do so slowly. Even when I was taking 6-9 per day and then Herceptin was over, I took about 2 months to ramp down to 2 per day as I felt my body was "use to" so many and didn't want to shock the system. This is even more important with CoQ 10 - ramp up slowly and ramp down slowly.
__________________
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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03-10-2008, 07:32 AM
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#13
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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wow Becky that some serious titrating going on. Think i'll take your advise and go slow. thanks for the help..what is the other supp that you mentioned for? I did not purchase that one..
suzanne
__________________
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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