Hi everyone,

I just took a trip to our local health food store in search of mushroom extract for the purpose of restoring white blood cell counts and boosting immunity.

I talked to the sales guy about my husband's current diagnoses and what I was looking for. He showed me a couple things, but enthusiastically suggested a product called Cell Forte MAX3, which is IP-6 and Inositol, plus Maitake extract and Cat's Claw. Has anyone used this? It says to take 2 capsules a day for maintenance, but that you can take up to 16 a day if you need extra support.

I have done some web searches and it seems that IP-6 and Inositol is a hot topic of study in regards to cancer.

I guess I have a couple questions. Any idea if what I bought is as good as, better than, or worse than a standard 3 mushroom complex? (Or should we use both?). And has anyone been told anything about using this complex while receiving chemotherapy? If you've used it during chemo, how much did you take?

Our onc is fairly "old school" and it's not the type of place that offers much in the way of nutritional information (although they have other good points!). I'm fairly knowledgeable when it comes to nutrition, but when we start talking supplements, I have a lot to learn and like everyone, not enough time to become an expert overnight.

Thanks for any info!

_________________
Teri

In loving memory of my best friend, soul mate and hubby, Bill (aka "bware21").
You are my most favorite person -- forever.

July 17, 1952 - July 16, 2007
(Ext. SCLC)

"Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow." - James 1:17

I take Cell forte w/inositol, but my herbologist told me under no circumstances should a person who has had/have lung cancer take maitake mushroom. He does have me on reishi (ghonoderma) and cloud musroom (coriolus versicolor/PSP).

_________________
Alisa
single mother of twin boys
diagnosed at 43 yrs. old
NSCLC dx. July 2000, Stage IIIa
lobectomy; 6 cycles taxol/carboplatin
followup w/traditional chinese medicine
(consisting of chinese herbs and many supplements/vitamins)
Celebrex 200 mg 2x/day
OPC and ORAC (2 top super antioxidants)
No Evidence of Disease since January, 2001
Lost Mother/Grandfather/Aunts and Uncles all to nsclc
Lost Father to prostate ca.that spread to lungs

Ditto Alisa.

_________________
Carol
64 Year old former smoker
1/4/05 at age 56 DX NSCLC, upper right lobe.
Staged IIA by PET Scan.
Restaged to IIIA by surgeon prior to surgery, after he examined PET and CT Scan results.
4/7/05 Completed 6 weeks of radiation and chemotherapy (taxol/carboplatin).
4/29/05 CT Scan.
5/21/05 PET Scan.
5/31/05 Met with surgeon, PET Scan showed nodule in left lung lit up that never lit up before.
6/9/05 Biopsy=OK nodule is scar tissue.
7/1/05 BRONCHOSCOPY,
MEDIASTINOSCOPY, THORACOTOMY SURGERY=ALL MARGINS CLEAN, 20 LYMPH NODES REMOVED. PLUS ONE RIB BONE. ALL NEGATIVE FOR CANCER.
8/9/05 & 9/1/05 ADJUVANT CHEMO. 10/4/05 1ST CT SCAN="Defined patchy density at the superior segment of the right lower lobe. Findings are most likely related to recent surgery and/or posttreatment change, however, this should be followed on subsequent studies".
1/3/06 Brain CT=Clear;Chest CT=Scar Tissue.
1/4/06 ONE YEAR SINCE DIAGNOSIS
4/1/06 Brain & Chest CT=NED. 6/13/06 XRAY=NERD.
7/1/06 ONE YEAR SINCE SURGERY.
10/25/06 CT=NED.
1/4/07 TWO YEARS SINCE DIAGNOSIS
5/3/07 CT=NED.
7/1/07 TWO YEARS SINCE SURGERY.
11/6/07 CT=NED
PLEASE continue to keep me in your prayers.WHEN PRAISES GO UP, BLESSINGS COME DOWN.[/size]
1/4/08 THREE YEARS SINCE DIAGNOSIS
3/20/08 CT=NED
6/20/08 X-RAY=NED
7/1/08 THREE YEARS SINCE SURGERY.
10/27/08 CT=NED
1/4/09 FOUR YEARS SINCE DIAGNOSIS
3/26/09 X-RAY=NED
7/1/09 FOUR YEARS SINCE SURGERY.
9/17/09 CHEST X-RAY CEA BLOOD TEST=NED
1/4/10 FIVE YEARS SINCE DIAGNOSIS
3/29/10 X-RAY=NED
10/5/10 CT=NED
4/1/11 X-RAY=NED
7/1/11 SIX YEARS SINCE SURGERY
10/10/11 X-RAY=NED
4/15/12 CT/PET=NED
4/18/13 CT=NEW 3MM NODULE FOUND ON UPPER LEFT LOBE

Thank you so much for that information Alisa. I hadn't heard that yet. Can I ask, did you use any Chinese medicine during your treatment, or only afterwards?

_________________
Teri

In loving memory of my best friend, soul mate and hubby, Bill (aka "bware21").
You are my most favorite person -- forever.

July 17, 1952 - July 16, 2007
(Ext. SCLC)

"Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow." - James 1:17

Why not Maitake?

Thanks for the info!!
Jamie

_________________
We are not dealt a situation we cannot handle. It is how we handle these situations, that defines who we are, and who we'll become.
Age 35 at diagnosis
[size=75]Dx December 2004 Stage IIIB
Started Tarceva June 2005(working)
Stable scans (8/2005)
Stable scans (10/2005)
Stable scans (11/2005)
Celebrating 1 year since diagnosis
1/16/06 NED--just scar tissue and/or fibrosis
4/16/06 NED--just scar tissue and/or fibrosis
7/19/06 Stability again--Thank you Lord Jesus!!
11/19/06 NED
1/19/07 NED Again!!!
4/19/07 NED Again!! God is Good!
7/21/07 NED AGAIN!! Pet was clear!!
10/25/07 NED AGAIN!!! God is Good!
01/2008 Cancer free and thanking God!!
06/2008 NED AGAIN!! Thank you God!!
10/2008 NED AGAIN!! Thank you God!!
2/2009 NED AGAIN!! Thank you God!!
6/2009 NED AGAIN! Thank you God!!
12/2009 NED AGAIN!! Thanks be to GOD!!
6/2010 NED AGAIN!!! Thanks be to GOD!!
5 1/2 Year Survivor
http://www.caringbridge.org/tn/jamie
www.memphislungcancerconnections.com
www.lungevity.org/playingforacure

[/size]

Sorry for the late reply. I was crazy at work and didn't get to this site all week.

I honestly don't remember the research my herbologist gave me about Maitake, but I know he told me not to take it, and the reason had to do with lung cancer. When I see him again, I'll ask him for the research again.

As for taking herbs/supplements during treatment - the dr. had me on a different protocol during treatment (no antioxidants) but had me on co-q 10; astragulus; probiotics; melatonin and his own blended mushroom tea (I think with reishi, PSP, licorace root and more).

After my treatments, he added on the vitamins and antioxidants along with the chinese herbs and stuff I was already taking.

Hope that helps!

Best regards.

_________________
Alisa
single mother of twin boys
diagnosed at 43 yrs. old
NSCLC dx. July 2000, Stage IIIa
lobectomy; 6 cycles taxol/carboplatin
followup w/traditional chinese medicine
(consisting of chinese herbs and many supplements/vitamins)
Celebrex 200 mg 2x/day
OPC and ORAC (2 top super antioxidants)
No Evidence of Disease since January, 2001
Lost Mother/Grandfather/Aunts and Uncles all to nsclc
Lost Father to prostate ca.that spread to lungs

Terri,
I took the IP6 & Inositol along with many other supplements/antioxidants and IV Vitamin C throughout my entire treatment. I am still taking them all now. As you can see by my profile, I am currently in remission and feeling pretty good. My oncologist recommended that I not take anything other than a multivitamin. I saw a doctor that practiced complimentary/alternative medicine, and he chose the supplements that I should take and administered the IV Vitamin C. I had excellent results and almost no side effects from my chemo! Some oncologists think that antioxidants may interfere with the chemotherapy - although there is no proof that this is true. Complimentary/alternative practicioners think that the antioxidants work synergysticly with the chemo to produce better results. I feel that this was the case with my treatments. Whatever you and Bill decide to do I wish you the very best of luck.
God Bless,
Sharon

_________________

Picture is me and my big brother Tommy who also has lung cancer.(June 2006)
Sadly, Tommy was called home 6/29/2008. May he rest in peace.


12/28/05: Admitted to hospital for L pleural effusion.
12/29/05:1400cc's drained from L lung, biopsy revealed adenocarcinoma. CT, MRI, ultrasound, and bone scan revealed multiple small pleural lesions bilateraly, several small liver lesions, and 1 small lesion on lumbar spine. Largest lesion is approximately 2 cm (on spine), all lung lesions are mm's.
1/23/06:Second opinion at Fox Chase Cancer Center - agrees with initial diagnosis Stage lV NSCLC Adenocarcinoma
1/24/06:Pet scan confirms findings on CT & MRI
1/27/06:CT directed needle biopsy of liver confirms original diagnosis of Adenocarcinoma.
2/6/06:Started Carbo/Taxol/Avastin every 21 days for 6 cycles.
2/9/06:Portacath placement for chemotherapy.
3/3/06:Started IV Vitamin C 3times/week.
3/21/06:CT revealed lung nodules are shrinking.
4/28/06:CT revealed improvement in both the lung and liver.
5/23/06:Last round of Carbo/Taxol/Avastin.
6/7/06:CT revealed 2 small spots that do not appear to be cancer in the lungs, and 2 spots left on liver that are too small to be measured.
6/13/06:Started tx with just Avastin every 21 days.
6/14/06:Reduced lV Vitamin C to 2 times/week.
8/7/06:CT still shows small spots in lung, no change in size - may not be cancer. Liver clean!!!
10/10/06:CT and Bone Scan. No change on CT, Bone Scan clean. Doc says looks like remission!!!!! Yay!!!!
1/29/07:CT shows stable pulmonary nodules with new liver mets noted.
2/19/07: Started trial with Alimta and Cetuximab.
3/27/07:CT shows disease progression in lung and liver.
4/30/07: Started Taxotere every 21 days.
6/4/07: CT shows disease is stable - Yes!
7/16/07: CT shows shrinkage in all tumors - Yes, yes, yes! Will continue with Taxotere for as long as tolerated. Am still receiving IV Vitamin C once a week and am taking numerous supplements.
8/28/2007: CT is stable, possibly slight shrinkage! Will continue Taxotere.
12/10/2007: CT still stable!
2/19/2008: CT shows multiple hypodense lesions within the liver are now larger in size; lung nodules stable. Gemzar started (2 weeks on, 1 week off)
4/28/2008: CT shows slight shrinkage in 3 of 4 liver lesions. YAY!!!
7/2/2008: CT shows all lesions stable! Yesssss!!!!!!! Will continue with Gemzar.

I really appreciate everyone's response. It seems every doctor has a different idea -- it's so overwhelming! Right now, Bill is just taking digestive enzymes and CoQ10, plus he has a few Boost shakes a week, and I have some meal replacement powder with extra vitamins that I put in fruit/yogurt (the good, natural kind) smoothies. I think I'll look for the IP6 & Inositol without the added mushroom, because it does seem to come up in a lot of research.

It can be difficult when you're researching on someone else's behalf (especialy when your onc is of no help in this area). If it were me, I'd be happily seeing multiple types of doctors to get as much info as possible -- that's how I do things. With Bill, the last thing he wants is to be running all over the place to doctors, because it makes him feel "sick," like the cancer has totally taken over our lives, which I understand completely too. He's happy to take supplements and try new things, but he's also putting his trust in me -- I'm a bit gun-shy after the Maitake mushroom thing. What I do know, is that I trust the info I receive from this board much more than any info I receive from a vitamin store.

Thanks so much to you all! Bill starts his 3rd cycle of chemo today.

_________________
Teri

In loving memory of my best friend, soul mate and hubby, Bill (aka "bware21").
You are my most favorite person -- forever.

July 17, 1952 - July 16, 2007
(Ext. SCLC)

"Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow." - James 1:17

Sharon/Alisa,
How did you find the herbologist and complementary medicine doctor? I'm looking for someone reputable in the Phoenix area (I know both of you are a long way from me), and was just wondering if you had any suggestions on how to go about it. I've heard good things about a Homeopath in Irvine, CA and am thinking of going to see him, but also looking for someone a little more local.
Thanks,
Raney

_________________
30 yo Never Smoker - Married Mom to two little boys (5 and 1 year!)
10/14/06 dx NSCLC Adeno - 4 cm tumor left upper lobe and mets to pelvis, L5, and sacrum
10/15/06 First monthly Zometa treatment
10/19/06 Began Radiation treatment to bone mets - 14 treatments total
10/23/06 Began Tarceva
11/15/06 Chest x-ray shows primary tumor no growth
Continuing Tarceva - CT of Chest, Abdomen and Pelvis scheduled in 1 month. If no shrinkage, new plan will be started
12/12/06 - CT and X-ray show progression. Scrapping Tarceva and moving on to Taxol/Carboplatin/Avastin
12/15/06 - First Chemo
1/4/07 - Primary tumor shrunk on X-Ray
1/5/07 - Allergic reaction to Taxol - Changing to different drug and trying chemo again tomorrow.
1/6/07 - Second Cycle of Chemo -Did Abraxane/Carboplatin/Avastin -No Problems
1/25/07 - CT showed primary shrunk from 5.6cm at largest point to 3 cm, less lymph node involvement, and bones stable
2/14/07 - X-Ray showed continued shrinkage and nothing new. Primary is now 1.7cm on x-ray
3/6/07 - X-Ray showed slight shrinkage and slightly less dense.
4/2/07 - CT showed all resolved except primary 2-3 cm.
4/30/07 - X-Ray showed stable - Began Avastin only
5/23/07 - CT shows stable or slightly smaller!
6/15/07 - Still stable - New Asthma due to chemo
6/28/07 - 2 new bone areas light up on PET - Left Ischium and Right Femur.
7/3/07 - Radiation started to treat new bone mets - Scheduled for 10x
7/3/07 - Brain MRI - Please no brain mets - Scheduled to receive results 7/6/07
7/4/07 - Made it to 31!
7/6/07 - 6mm brain met. SRS to be scheduled. New chemo to be started - probably a trial.
8/1/07 - Thin-cut MRI showed 11 brain mets. WBR to start tomorrow. Chemo to start in 5 weeks.
9/6/07 - Brain MRI shows stable- improved (a little early for scan), CT shows progression of primary and lymphs BUT cleared for trial
9/10/07 - First Cycle Docetaxel + Obatoclax Mesylate
10/18/07 - Out of Trial. Minor progression in primary, lymphs, and adrenal. Brain MRI looked o.k.
10/24/07 - Surgical removal of lymph node for molecular profiling trial I'm enrolled in. Should get results back from profiling w/in 2 weeks.
11/8/07 - Profile Back - Starting Camptosar and Erbitux early next week.
11/29/07 - Chest X-Ray "clearly better!"
12/26/07 - CT confirmed primary is smaller. Lymph nodes also much better. MRI showed brain improved in all but 2 spots, which are stable.
2/6/08 - CT appears stable, continue 6 more weeks of treatment
2/14/08 - Breast biopsy shows as NSCLC met
2/19/08 - Starting Arimidex and Sorafenib (if ins. approves)
3/17/08 - Post obstructive pneumonia and elevated pancreatic enzymes - reduced dosage of Sorafenib
3/20/08 - Even higher elevated pancreatic enzymes - stop Sorafenib for 3 days then restart and further reduced dose.
4/10/08 - Around 2 PM Lost the battle to live. Won the battle to be pain free.

I was so lucky - my internist referred me to my dr/herbologist upon diagnosis. I wouldn't know where to look out of NYC though. Sorry.

_________________
Alisa
single mother of twin boys
diagnosed at 43 yrs. old
NSCLC dx. July 2000, Stage IIIa
lobectomy; 6 cycles taxol/carboplatin
followup w/traditional chinese medicine
(consisting of chinese herbs and many supplements/vitamins)
Celebrex 200 mg 2x/day
OPC and ORAC (2 top super antioxidants)
No Evidence of Disease since January, 2001
Lost Mother/Grandfather/Aunts and Uncles all to nsclc
Lost Father to prostate ca.that spread to lungs