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Inaccurate test results

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Topic: Inaccurate test results
Posted By: mainsailset
Subject: Inaccurate test results
Date Posted: May 28 2009 at 8:26am

Another reminder that tests and doctors are not perfect beings, beware all this one may be from Quebec but it is not an outlier.

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090528/quebec_tests_090528/20090528?hub=Health - http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090528/quebec_tests_090528/20090528?hub=Health
 



Replies:
Posted By: Nancy
Date Posted: May 28 2009 at 11:57am
Mainy,
 
I posted this link in the news forum, and now let me fill you in on what little I know as to Lori's test results from the anti-aging specialist.
 
Lori will join the site and post all the tests she had done.
 
Well, it seems that Lori's D tests were also innacurate, as the results from today are a whopping 44.6!!!!Angry When she had them done at the Altoona hospital, they told her they were 76, and we thought they were doing them here., but apparently they are sending them away, and who knows, maybe it is to Quest? She will now up her iu's alot!
 
So...she has Cytomegalovirus, which is a hospital borne virus, and the last time she was in the hospital was last June for reconstruction, and her breast took almost 3 months to heal! This virus produces symptoms such as short-term memory loss, Epstein Barr symptoms, fatigue, etc. Here is a link.
 
http://www.mayoclinic.com/health/cmv/DS00938/DSECTION=symptoms - http://www.mayoclinic.com/health/cmv/DS00938/DSECTION=symptoms
 
She will be on Valcyte every day for 3 months and this med produces flu-like symptoms. The doctor said that some people actually end up in bed for 9 weeks taking this med. This is not Valtrex.
 
http://www.medicalnewstoday.com/articles/139136.php - http://www.medicalnewstoday.com/articles/139136.php
 
Lori's tests show that she has a chronic virus in her system, and that is why she had shingles 2 years before dx and again about 2 months ago. However, the shingle virus is staying in her body and not coming out as the blisters as it did 4 years ago. Chronic inflammation leads to cancer. Inflammation is actually a good thing...but not chronic.
 
Lori also has MS symptoms,Cry her NK cells are low, she has hypothyroidism, her cortisol levels are  really high, her B12 is low, they did not find any metals in her blood, the RBC's were good, testosterone good, has been exposed to mono, growth hormone good, cholesterol and triglcycerides great, estrogen low and in fact only 12, and it should be at least 90, progesterone low, WBC low, and her DHEA is very high.
 
In fact, he said that her levels  were the highest of any he has ever seen...of his 3500 patients!! The range for the DHEA is  between 110-554, and hers are 1,659! This has to do with the adrenal glands, and while he said there is a very low suspicion of cancer in the adrenal glands, he is ordering a CAT scan, which she will have at Magee Women's in Pittsburgh.
 
He was glad that she had TNBC, especially the HER2-.
 
The compounding pharmacist in Pittsburgh is who will be doing her meds, not the one here in Altoona. The one in Pittsburgh is an expert, and he can get the insurance companies to pay!! She can however have lab work done her as there is one of their labs here in Altoona.
 
Not a good day, and she was pissed to say the least. Why the hell isn't every doctor ordering all these tests on every woman, and I don't mean just those dx with bc...I mean every woman and man!! The drugs that we are prescribed are not the answers, and the damned doctor does not even know to order all these tests...and trust me there were more....I just cannot remember everyone.
 
So..from fatigue to short-term memory loss, to chronic inflammation, and everything ...it is related to our body's ability to handle everything.
 
Cost per visit...$340.00, but she will not be on all these meds all her life, just the ones to keep her healthy, and hopefully help her fight off cancer.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: trip2
Date Posted: May 28 2009 at 12:24pm
Thanks for the update on Lori Nancy.
 
She will be in my prayers with the upcoming Cat.
 
Hug


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Sunris
Date Posted: May 28 2009 at 1:37pm
Nancy,

I will keep Lori in my prayers, and thanks for the update.

You have now officially ( not that you haven't before) highly encouraged me to RUN, not walk to my ONC office and DEMAND these tests. This pisses me off just to read about it.

LADIES : IT IS TIME TO TAKE A STAND!! ARE YOU WITH ME??

-------------
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.



Posted By: Nancy
Date Posted: May 28 2009 at 2:03pm
Dawn,
 
A regular doctor will not even have the levels correct. Only an anti-aging specialist will know the correct levels. That is why this is cutting edge medicine right now, and the damned insurance companies do not want to cover the office visit...unless you know how to submit them correctly.
 
As far as we know all the lab work will be covered. If you all will just read the book Anti Cancer a New way of life, it speaks to all these many ways to fight cancer. I don't care what anyone thinks of Suzanne Somers, but I am telling you that the book Ageless is filled with information and facts!!
 
 
Just the symptoms of MS is so frightening, and all this due to hormones? Yes that is right! HORMONES!! If you look up DEATH, it will say "loss of hormones". Without hormones, there is no quality of life. Do you think you had quality of life before dx of bc ....in which your body was allowing the cancer cells to grow...or after chemo and rads which destroyed the balance of hormones? I don't think so.
 
Why do you think the drug companies are fighting the biodentical hormone replacement therapy? They cannot manufacture them, yet the synthetic hormones and birth control...which are synthetic hormones are causing bc, and women are dying.
 
It is time....where is the outrage for breast cancer...another dear woman died...our sisiter...how tragic!
Love,
Nancy
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: trip2
Date Posted: May 28 2009 at 2:36pm
Hi Mainy and thank you for the information.
 
These are things we need to know even if it does add to our stress level.
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Yankeespie
Date Posted: May 28 2009 at 4:07pm

Hi all ~ Gee Nancy thank you for all that info! I for one will be checking into Bio identical Hormone Replacement. I like the idea that they check to see the status of your (overall) health before they  recommend any treatment for you. Now that makes alot of sense! You would think that should be part of everyones yearly physical examine! Not to mention being Dx with BC or any major illness for that matter,these test would be a Baseline of our over all health before and after any treatment! Makes a person wonder why they aren't doing it??? How costly could these simple test be, in comparison to the countless lives they could potentially save??

As for Lori's Vit D3 levels being off that far. She should hold the hospital accountable for that! If they are that far off on a simple Vit D3 test how far off are they on more significant testing???? That we have no way of knowing??? Where are the check and balances?? Just shows me just how important it is for us to take charge of our own Health and question everything!
 
And most importantly for us all to keep one another informed of the different approaches we are taking, and always remember to keep an open mind for alternative approaches to this Beast.
 
Blanket of Warm Hugggs,
Bev


-------------
Dx 2-10-09
Er neg Pr neg Her2 neg 1+
Double Mastectomy 3-2-09
2.7cm grade 3
Lymph Nodes neg
NO reconstruction, NO chemo
KNOWLEDGE IS POWER


Posted By: sibu
Date Posted: May 28 2009 at 5:43pm
Wow, Nancy I'm floored!

Where to begin? Thank G-d she had the full range of tests run. Guess all the answers were in those 22 vials they drew.

I always wonder about those results, the accuracy. Hasn't Lori been on fairly major doses of D for some time now?

You know my testosterone levels came back very high, which is funny because I haven't had any ovaries that produce testosterone for over a year! Hmmm...

Could Lori's high adrenals be related to her being a serious runner?

I am actually having blood drawn tomorrow for a follow-up after a couple months on bhrt, to see how it checks out. PS I don't think the article was referring to Quest, but rather Que as in Quebec's lab?

Please post about how her compounding pharmacist gets these things covered. I'm sure many will be interested. My particular regimen costs about $100 a month, and with copays that would only be lowered by $25 or so, but I know there are others who are dealing with this.

Nothing but love and infinite support for Lori, you and the entire family, my dear. I just want to see her system reach that tipping point of health and flush out all of this terrible stuff. She has battled too many things for too long. Maybe she needs 9 weeks flat in bed and let her body burn off every nasty thing. She hasn't taken a break since this all started.

She is indeed lucky to have you in her corner.

XOXOXO

Donna






-------------
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07


Posted By: dmwolf
Date Posted: May 28 2009 at 5:52pm
Nancy, I had no idea that Lori is dealing with so much.  MS symptoms especially sound really frightening.  When I was 27 I went through an MS scare, and boy did it freak me out. 

It sounds like her body is worn down.  Is she getting enough rest?  Is she too stressed at work?    A self-care sabbatical might be in order, if she can afford it.

How are you doing with all this?  I can imagine it being very hard on a mother, maybe even harder than if the symptoms were your own.  

Love,
Denise


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: Nancy
Date Posted: May 29 2009 at 7:52am
Donna,
 
The Quest labs to which I was referring are the labs in question as to the Vitamin D levels. I should have clarified that in my first post and not hacked this thread of mainy's.
 
http://www.nytimes.com/2009/01/08/business/08labtest.html - http://www.nytimes.com/2009/01/08/business/08labtest.html
 
The 9 weeks flat in bed, from what the doctor said as to the Valcyte, is not a very pleasant 9 weeks. The flu like symptoms are pretty bad, and the shingles can come out all over her body, and from my experience and hers of having shingles, believe me this is not pleasant. You feel as though you have electrical shocks at the nerve endings, and there are blisters as with the chicken pox. The doctor said she will not be contagious.
 
Once the ovaries are gone, or not functioning, due to menopause or even perimenopause,  the adrenals are to take over...this is what our bodies are to do if they are functioning properly. However, if the adrenals are blown out, or there is a mass, then they do not produce estrogen.
 
http://www.womentowomen.com/adrenalfatigue/adrenalglandnutrition.aspx - http://www.womentowomen.com/adrenalfatigue/adrenalglandnutrition.aspx
 
Trust me these test results are accurate, and if your testosterone levels are very high then there is a possiblity that your adrenals are not functioning properly either, as that is a symptom. Did you have that test? Lori was tested for everything that you can possibly think of, and this doctor uses only one lab, as from what I gather, many others do not give accurate results.
 
As to her doses of D3, she stopped taking the cod liver oil, as her onc said that 76 was too high. How can these oncs, or for that matter any doctor continue to practice when they are not continuing to be educated as to the latest findings. 76 is great, and could be higher, especially for a person dx with cancer.
 
I think what really has Lori upset is the insurance companies not wanting to pay for your bios, and the appointments also. These doctors are MD's, not some quacks as people think, and have been in practice ...some for over 50 years.They are OB/GYN's reaching out to women to help them...not just supply them with yet another drug to compound their problems. How do you think the drug name Premarin came to be? Mares urine.
 
The men have hormonal problems also, and boy are they quick to cover Viagra and all those other "get it up....keep it up for over 4 hours drugs". Of course we have old white men in Congress so that really benefits them, and they run everything.
 
Anti-Aging is a branch of medicine, just as sports medicine and a list of others. It is the drug companies in line with the insurance companies which are fighting this. There are millions of women taking biodenticals because they know the synthetic ones are causing cancer, and a "one size fits all" is not helping anyone.
 
Thank you for your concerns and support for Lori..
 
Hugs,
Nancy
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: sibu
Date Posted: May 29 2009 at 9:08am
Okay, so if she puts herself through 9 weeks of h***, is the doctor confident that it will knock out this virus?

Thank for the info. on the testosterone. I'll bring it up to my bhrt specialist when I see her next week. She said the only other time she'd seen that was with someone taking testosterone supplements. She thought there may have been something in the Chinese herbs I was taking.

My oncologist also asked me why I was taking high doses of D3. Hello?!

Love ya,

Donna


-------------
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07


Posted By: Nancy
Date Posted: May 29 2009 at 10:53am
Donna,
 
He said this "could happen", (the 9 weeks in bed), not that it would happen. She is to take 2 pills a day, and took the first one last night. There was no reaction at that time, and I have not talked with her today. This Valcyte is the drug they give to people who have had transplants. Cost...$3,700.00 per month...her copay is $35.00. Since the shingles are in her body and have not surfaced, that is a real concern, as when they stay in the body that is a chronic infection. Chronic infections can lead to cancer. That could well be the reason for the extremely high DHEA levels. The same with chronic inflammation.
 
So how many times have you heard that? How many doctors test for all these things? One out of 100,000 or more? Probably.
 
I think I posted when she had the blood work that they were testing for molds, viruses, metals....everything. In fact many years ago her son had mono, and that showed up in her test results. She had been exposed to mono through him, and that was still in her blood. Pretty amazing what is revealed in our blood, and the many illnesses that we have and yet are not treated for by our doctors, simply because they have never tested us for them.
 
As to your onc, and his statement, they are now saying that almost all of the women dx with osteoporosis are most likely just very very deficient in D3. Now that would not surprise you or me or many of the women, but have the doctors read these latest findings? Nope...just give Fosomax!
 
Drug comapnies don't care, as they have billions set aside for the lawsuits and attorneys ready to fight these women. Oh, but that could take 20 years and the women who have taken them and it has affected them ,may well be dead by that time. 23 already dead from esophageal cancer. This crap stay in your body for years after being off of it.
 
Education is the key, and if our doctors will not educate themselves as medicine progresses, then we must educate ourselves. If we do not, then we only have ourselves to blame. So much is just a keyboard away.
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: sibu
Date Posted: May 29 2009 at 1:36pm
Even when I try, I have a hard time educating myself on certain subjects.

The information that's allowed "out" is very controlled by big pharma.

As an example, I just happened across a scathing medical criticism of Gardasil. It said the "research" Wyeth did (why does that name keep popping up?) was sketchy at best, done with a handful of young girls in Africa. And now we're jumping on the "one less" bandwagon and injecting our young daughters with this while they make billions. They know just how to manipulate the FDA approval process, while fighting it for things that really help people like bhrt.

Let's check back 20 years from now and see what effects this has caused--like all the birth control pills our generation was encouraged to take.





-------------
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07


Posted By: dmayes
Date Posted: May 29 2009 at 2:15pm
Nancy,
 
I bought the Anti-Cancer book yesterday (i've sent you a PM) and could not put it down last night!
 
LADIES - BUY THE BOOK ANTI CANCER:  A NEW WAY OF LIFE.
 
It is compelling and life changing.  Some friends told me of some things to do whilst on chemo, though they hadnt read the book it was like they had.  My bloodwork was better yesterday (I had dose 2 today) than it was before dose 1.  Major change I made - adding tumeric (with black pepper) to one meal a day (usually eggs, goes great).  Using ginger and garlic in cooking, and exercising 1/2 a day Mon to Fri (when there are no kids around to stop me).
 
And this showed up in my bloodwork in 3 weeks - we all know it is not a good side effect of chemo.  Thanks Nancy for telling me about the book - it should be number one on the list and have 5 stars after it.
 
I am looking forward to finishing it and making my new shopping list - no more white bread and sugary foods at all!  Hope the family like the change - nothing else is coming in the door!
 
Best wishes for Lori - rest sounds like it is what she needs.  I hope you get some too, to keep yourself energised and positive for her.  Hugs and prayers coming your way.
 
Cheers all, Debs
 


-------------
Debs | Laugh every day, Love every minute.
Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA -
Cytoxin/Taxotere x4 end Jul09.
ReCon surgery March10.


Posted By: Nancy
Date Posted: May 29 2009 at 2:19pm
Donna,
 
I had posted an article on this vaccine a few months ago, and they were saying it was not good! So, now when will the lawsuits start on this and how many very young girls will have many complications and perhaps even die from this until it is pulled off the market. Here is the link which I posted in February. It is the second link.
 
So they tried this vaccine on a handful of unsuspecting dear young girls in Africa. Yes, what say did they have in all this" None! Now doesn't that sound familiar? Ahhhh.... yes..... it brings to mind the Tuskeege study of untreated syphilis in the African American males.
 
http://www.usrf.org/uro-video/Tuskegee_2004/Tuskegee_study.pdf - http://www.usrf.org/uro-video/Tuskegee_2004/Tuskegee_study.pdf
 
 
http://articles.mercola.com/sites/articles/archive/2009/02/19/Katie-Couric-Reports-on-Serious-Vaccine-Issues.aspx - http://articles.mercola.com/sites/articles/archive/2009/02/19/Katie-Couric-Reports-on-Serious-Vaccine-Issues.aspx
 
 
Ahhh, but the birth control pills are already having an effect on the women and it is called breast cancer and ovarian cancer. I will not believe that it only affected those who have been dx with BC+. Boy did the drug companies make billions, probably trillions from these.
 
I guess we have to start demanding more information be released and standing up for our rights as women.
 
Let's see.... in 20 years, at the rate we are going,  approximately 818,600 women will have died, and every year 182,460 are dx, that's one every 3 minutes, and there are 66,770 cases of in situ dx every year. That is in the US alone. Every 13 minutes here in the states a woman dies from breast cancer..actually from causes related to being dx with bc. Again...where the hell is the outrage. I just don't see it!!
 
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Beth Anne
Date Posted: May 30 2009 at 7:30am
Nancy,
If men were dying at the same rate the drug companies would be all over that.

Beth Anne


-------------
Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
CK3/09.Brain resection4/09 WBR
Dreaming of dancing with Ned!


Posted By: mainsailset
Date Posted: May 30 2009 at 8:18am
Nancy, I read your updates on Lori and feel this huge anger rising up. In a sense the comparison to the Tuskegee experiments you mention pretty much sum up the whole philosophy of big pharma even/and especially today. If often think it's a case of 'just how far can we push these people'
 
I  took a trip to a respected vitamin store yesterday and was startled to see how many vitamin D with 4,000 iu's were available. Some (gel caps) said to take one gel cap (4,000 iu's) every other day, some (tablets named Breast D on label) were 4,000 iu's an said to take 1-2 tablet each day!
 
I keep going back to the Vitamin D because I really think - and let's take Lori as an example (please and thank you)...they're still lumping her D results into one number. She could be suffering from a D3 deficiency which would certainly explain her counts and her MS symptoms and compromised immune system and yet have a high D2 count which is overwhelmingly disguising the real problem. I go back to the onc prescribing a D2 50,000 tablet for me to take 1x a week...never addressed the D3 for me but whoa howdie did it bring up my count!
 
Lori is all of us and all of us are Lori, we must stand together on this.


Posted By: Nancy
Date Posted: May 30 2009 at 5:29pm
Denise,
 
First to you, as to how I am handling all this? I am really really pissed, ...outraged, ...so damn angry that Lori was even dx with breast cancer, but more so now, as not one doctor until now has ever ordered all these tests for her, or for that matter any of you. Denise have you ever had all these tests? Have any of you women on this site ever had all these tests?
 
For mono to be found in her blood work, which was when she was exposed to her son 14 years ago and just sits there is unbelievable. For the shingles to lie in her body and not come out and cause an elevated DHEA of 1,659 when normal is 110-554, and know that this can mean a recurrence of cancer/mets, or death in 5 years, is unforgiveable. So she was a walking time bomb, and she was saying that maybe she should have never had these tests. I say now something can be done about it.
 
Beth Annne, you are so right if this were men dying at this rate, it would not be tolerated. Forgive me Steve and any of the other wonderful men on this site.
 
Then Mainy tells me that the RSS feed was running that cancer rates are down. Who the hell are they trying to fool? Oh that's right...how far can we push people, how many times can we lie to the American public, or for that matter to everyone in the world, and how many times will they believe us? Well, we (not me), continue to believe, and nothing is ever questioned. If they say it is so...well it must be, because they are reporting it on the national news....which is run by I think 3 old white men!! You get my drift here?
 
Don't any of you ever question as to why or how you got breast cancer? Of course you do! What have you done to deserve this? Not a damned thing!! Don't any of you ever look at your doctors/oncs and ask them where they have had their heads over the past few years that they do not even know about the benefits of D3?
 
Don't you ever ask them why they continue to believe everything the drug companies tell them? Oh that's right, they would have to forfeit their cruise next year if they did. The drug companies were threatening the doctors, and I posted the article stating that. Harvard students were rebelling against the drug companies but then...it went quiet once again.
 
When I decidesd to stop taking Fosomax, I called my GYN, and her nurse called me back stating it was of course my choice, but I did have osteopenia, and the Fosamax was helping. NOT!!! Bone pain, trouble swallowing recently. I had to talk over the nurse as she was not listening to me when I was saying that 23 women have died from esophageal cancer and I did not want to be number 24!
 
The council on D states that every woman dx with osteoporosis is most likely very deficient in D3. Do they test for that? Hell no!! Gee what do I want to take for that then? Bath tub cleaner or sunshine and a little white capsule? I opted for the latter.
 
My GYN is great, but when I go in August, I will have print outs of all the articles I have read on the bisphosphonates, and I will buy her the book ...The Truth About Fosomax. Also every article from the vitamin D council that I can find. And the book Ageless and the Anti cancer book.
 
So if we all....every woman, man and child takes about 5000-10,000 iu's of D3 every day and all of a sudden the cancer rates actually go down, gee...what will "they" have to say? It is a hormone and a very very very necessary hormone for our bodies/immune systems to function properly.
 
Lori said she will really pump up the D3 now and the cod liver oil! My sweet friend Bev (Yankeespie) is taking 10,000 iu's a day, as she is not doing chemo, but knows without a doubt how very important D3 is. Her doctor doesn't!
 
So, what do we do about this, and the testing that all of you should have but your doctors are either stupid/uneducated as to what you deserve or just don't give a damn...take you pick.
 
Look at how they treat you for chemo..no testing on the tumors, nothing, just throw everything at the cancer and hope to hell that something sticks, and then  2 years later say that a certain chemo is worthless for TNBC, and that is the one you had. Demand the testing on your tumors also!!
 
I tell you my dear women, at my age I have nothing to lose to go out there and make a stand. We have 5 daughters and 7 granddaughters many many nieces, and since the odds are 1 in 8 for bc, Lori may not be the only one dx with bc in this family. And if you believe those odds don't! It is more like 1 in 5 now.
 
I keep looking at Lori's tests, and just the MS symptoms make me sick. You all know how she lives her life, as I have told you a thousand times. Had she not researched how the body functions, and read the Anti Cancer book, and the Ageless book, and researched the anti-aging field of medicine, and what they had to offer, what would have happened? Tick-tock-tick-tock-tick-tock!
 
Ok, done for the night...just the nightWink You know I will be back!
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: mainsailset
Date Posted: May 30 2009 at 6:26pm
You know Nancy, if we on this site, got baseline D readings (from a lab besides Quest) then took the D3 in large doses, (or as much as onc's would allow) such as 5-10,000, then took another test say in 3 mos, then 6 then we can tell a couple of things
   1.  we can keep doing this and see if survival rates improve, recurrence rates drop, tumors shrink, overall health improves, etc
   2.  we can also test the idea that maybe our bodies don't assimilate D3 well
The Vitamin D council website was showing horrendous percentages for us cancer patients that have low D levels...this is something we can do for ourselves and it seems to impact the health of our whole system.
 
I think it's real nice to have a low fat diet and exercise after I've put my body through a year of chemo, surgery and radiation but that's not enough and the D3 seems a viable strategy for life.


Posted By: cg---
Date Posted: May 31 2009 at 5:41am
Dear All,
 
In the general population 80% of the population have CMV virus which lays dormant in our systems. When people have the virus present itself - it usually mimics symptoms of mononucleosis. Many people have this and are not aware of what is causing their symptoms when they have a flare and feel 'fluish'. When our immune system is compromised by chemotherapy it could awaken the dormant virus.
 
  • Fatigue
  • Weakness
  • Night sweats
  • Prolonged fever
  • Swollen glands or sore throat or both
  • Loss of appetite or weight loss or both
  • Muscle aches or joint pain or stiffness
  • General feeling of illness, discomfort or uneasiness.
  • The general standard of care is rest, good food, exercise, healthy living generally and symptomatic treatment for the most annoying symptoms.

    WARNINGS AND PRECAUTIONS FOR THIS DRUG are many and these are the indications for which this drug is recommended. This was copied directly from the 2009 CPS - Page 2249 supplied by the manufacturer Roche.
     
    Valcyte is indicated for:
    1.  The treatment of cytomegalovirus retinitis in patients with acquired immunodeficiency syndrome (AIDS).
     
    2.  The prevention of CMV disease in solid organ transplant patients at risk.
     
     
    A few of the most frightening side effects are: Prolonged usage increases bone marrow toxicity.
     
    Neutropenia                       27%                                     -
    Anemia                               26                                         -
    Retinal Detachment            15
     
    High on the list of other side effects, fever, diarrhea and many other side effects that would affect the quality of life.
     
    Connie


    Posted By: krisa
    Date Posted: May 31 2009 at 8:03am
    I appreciate this thread and the information provided.

    nancy,
    there is a connection with low levels of vitamin d and MS...and we know Lori takes her vitamin d.
    it does make one wonder if her body hasn't absorbed vitamin d properly, and how many of us might have the same problem.
    Heart


    Posted By: Yankeespie
    Date Posted: May 31 2009 at 9:12am
    Does anyone realize just what it takes for a person like (Nancy) to pour her heart out to all of us each and every day?
     
    I've been where she is now, trying to show people the truth, for their own good, and being called names like I was here on this site one time.
     
    You people just keep listening to Main Stream Media, the doctors, (that have been taught by the Phram. Co.), and wonder why there is NO CURE! You just keep putting money into their pockets, and make them richer and richer, while more and more of us die every day!
     
    I'll say this one time " I believe so strongly in my gut and in my hearts of hearts, that their conventional protocol for curing CANCER is slowly killing each and everyone of us! And that is why I choose not to take their Chemo Poisons! If its God's will that I die, than so be it, it damn sure won't be from their hand!
     
    Krisa---
     
     if you re-read the thread you would see that because of the wrong test results preformed at the hospital Lori cut back on her Vit D3. As far as I am concerned she should sue them for malpractice if she should develop MS or any other illness due to it!
     
    Isn't there anyone that listens????
     
    We need to stand up and fight all this BS.  They treat symtoms, not the cause! Not only with cancer with everything! The tests Lori had we should all be having every year, why don't we you ask! Because they are in the buisness to keep us coming back and giving them their paycheck! It's as simple as that!
     
    There is no other reason why they don't look for the cause first and than treat the illness!
     
    What pee's me off the most is, that while you people stay in your comfort zone, I most likely will die and so will you in the long run. I'm on a sinking ship and you all are the anchors that are sinking it! Because it's just too much work for you to do the research that needs to be done to wake yourselves up. Its much easier to stay in that La La Land you so despartely hang onto.
     
    Huggggggggggggggggs,
    Bev
     


    -------------
    Dx 2-10-09
    Er neg Pr neg Her2 neg 1+
    Double Mastectomy 3-2-09
    2.7cm grade 3
    Lymph Nodes neg
    NO reconstruction, NO chemo
    KNOWLEDGE IS POWER


    Posted By: trip2
    Date Posted: May 31 2009 at 9:26am
    Whoa let's calm this down please.
     
     
    It is everyone's personal choice as to how they are treated or not treated and we show our respect for their decisions.
     
    We do not attack other members in this forum.


    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: Yankeespie
    Date Posted: May 31 2009 at 9:50am
    Excuse me Pam... who did I attack?
     
    Respectively, Bev


    -------------
    Dx 2-10-09
    Er neg Pr neg Her2 neg 1+
    Double Mastectomy 3-2-09
    2.7cm grade 3
    Lymph Nodes neg
    NO reconstruction, NO chemo
    KNOWLEDGE IS POWER


    Posted By: trip2
    Date Posted: May 31 2009 at 10:02am
    Bev I am not going to feed into this but I will say that there is no doubt in anyone's mind how hard Nancy works for all of us and we love her dearly for doing so and for being Nancy

    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: dmwolf
    Date Posted: May 31 2009 at 10:24am
    Bev, everyone is doing the best they can.  The researchers do the best they can to understand the disease and develop treatments.  Doctors do the best they can coming up with treatment plans for every woman with cancer.  We do the best we can in selecting doctors and treatments.  It is all imperfect, and the state of medicine around cancer is very primitive.  No-one knows how to cure it.  I guess anger is natural, but I don't know that any person here or elsewhere really deserves it.  We're in a tough circumstance, is all.   Life is full of trials.  People suffer.  Suffering of many kinds is inevitable for every person on the planet, with or without cancer.  The question is what we do with it.  Do we shut down in anger, or do we do our best to open our hearts to love and life's many blessings?  

    Peace,
    Denise


    -------------
    DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


    Posted By: dmwolf
    Date Posted: May 31 2009 at 10:35am
    One more thought related to this:
    Correlation is not the same as causality.  Low vitamin D may be correlated with cancer and other illnesses, but that doesn't mean that low vitamin D causes these diseases, or that increasing one's vitamin D levels will reduce the risk of recurrence.    The same goes for any other metabolite or hormone one can measure in the body.   I wonder about the wisdom of taking high levels of just about anything.  Almost every vitamin/spice/supplement known to inhibit some types of cancer can exacerbate other types, even subtypes within the same cancer 'umbrella'.    It's hard to know what to do, what can help, and what might hurt.  

    I write this as a fellow seeker, unclear on how to proceed in the absence of strong evidence from large, well-controlled clinical trials.

    Love,
    Denise


    -------------
    DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


    Posted By: cg---
    Date Posted: May 31 2009 at 11:53am

    Please, anyone sitting in the Comfort Zone Lounge save me a chair! I have been out of my comfort zone since May 2007 when they told me I had breast cancer. Who Me? Couldn't Me? I almost drowned with drenching night sweats and hot flashes - because I would not take those 'breast cancer causing hormones'....and they published the study 'the rate of breast cancer is down' - because less women are using hormone replacements (I think not). The women in my family used hormones from their late 30s and early 40s (I am the only one that has breast cancer). I used glass containers - I never heated in plastic ...I never had coffee or tea in styrofoam....I don't drink, I don't smoke, I don't even use a can opener very well because I buy fresh fruits/vegetables and shop the European way.  I weighed 4 pounds more than I did 30 years ago. I loved the look of weeds long before it was fashionable or environmentally friendly - I stopped my husband from spraying our lawn 30 years ago when my children were born. I walk 7 days a week for 1-1/2 hours a day for the past 16 years....I eat my flaxseeds, my broccosprouts, my low-fat diet, drink my green tea, drink my water, avoid dairy...and I will radiate, and take my chemical cocktail or whatever else might give me a chance at living.  I do not choose one from column A (the chemo  toxic route), I do not choose one from column B (the organic natural route). I choose all of them and anything else that might make a difference - because the more time I spend looking into the cancer odyssey - the more convinced I am that we do not die from breast cancer - we die from the healthcare system that ignore us, dismiss us, misdiagnose us, misinform us, deny us and ultimately we survive not because of them but in spite of them.  What ever option that I can use to evict the intruder that lives within me I will take and hope there are more on the horizon.

    I will not take out a membership to the Woulda, Coulda, Shoulda Club.....I took it all, I did it all.  I made a conscious choice to live with one foot in the supplemental/natural world and one foot in the chemical world/nuclear world. Since it really is all just one big gamble I will hedge my bets by doing whatever it takes.
     
    One of the things we should all demand as our 'right to life' is that our tumors are tested extensively so that we have the information that will take the guess work out of the game of chance they call breast cancer treatments!!
     
    Connie


    Posted By: mainsailset
    Date Posted: May 31 2009 at 12:02pm
    Actually the correlation is the point. When the body's defenses are compromised the triggers that allow cancer to develop open their doors. The articles are not prouncing that 'low D causes these diseases'.
     
    What the articles are doing is reporting the current research results which are demonstrating that low levels of D are not only abnormally common in cancer patients (and the many other diseases it investigates) but that without the D, recurrence levels are extremely high.
     
    By comparing D's with 'almost every vitamin/spice/supplement' which obviously haven't undergone the same research, you're denying the research and you're denying yourself the opportunity to investigate it for yourself and perhaps make use of it.
     
    Yeah, we all follow lots of rabbit trails and fall down alot of rabbit holes when living with cancer and it is hard to know what to do, which way t turn, but with the D's we offered a broader range of research with more definitive results than we normally see. It is definitely worth it to take seriously.
     
    Are you taking the bisphosphonates for prevention by the way? 


    Posted By: dmayes
    Date Posted: May 31 2009 at 1:57pm

    Bev,

    It is your choice to get angry - however I have found that site has opened my eyes to many options and remedies that I was not aware of by my docs.  It has provided a place where women and men can communicate openly and be honest with each other.  This forum has allowed us to combine as a select sub-group and share knowledge.  We need to ask the doctors to do the same.  I actually told my onc about this site - he didnt know it existed and was keen to get the web address. 
     
    Maybe if we take a more pro-active stance we can help build a bridge over the huge chasm (sp?) the pharma's are creating with the docs and the reserachers.  Sure they are in it for the money - and I am sure that if they found the cure - they would make alot more.  I hope they are doing things for our benefit - it is all trial and error.  You have made your choice and good for you. 
     
    You are right - we will all die - it is enivitable!  But allow those of here to have our choice and respect that.  I started out angry - like Connie - wondered how htis happened to me.  But now I wonder how I can use my experience to help others as well.  After all - I can't change what has happened to me - but I will try to think of ways I can make a difference to others.  Having cancer doesn't give a defined expiry date - it is another challenge we face. 
     
    Nancy - wishing you and Lori lots of love and healing strength over the next few weeks.  We are all thinking of you.
     
    Cheers and hugs,
    Debs
     
     


    -------------
    Debs | Laugh every day, Love every minute.
    Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA -
    Cytoxin/Taxotere x4 end Jul09.
    ReCon surgery March10.


    Posted By: Yankeespie
    Date Posted: May 31 2009 at 2:10pm

    I post from the heart and with love for my sisters, and the world as a whole.

     

    I lost both my parents, two of my moms sisters, and one of the sisters who had cancer at the time had to hear her 10 yr. old daughter Dx with Juvenile Bone Cancer and than watched her die just 2 short yrs. later. After she buried her, she had to continue with her battle until she too succumbed to the beast.

     

    My Mom was 35 yrs. old when she received her first Dx with uterus cancer that was in 1961, she did not have Chemo at that time they just removed her uterus, it was 8 yrs. later when she was Dx with bone cancer this go around she did receive both Chemo and Rad. she died 7 mos. later. Her first Dx was 48 yrs. ago!! Their doing the best they can??? Please tell me how they are doing the best they can!

     

    I have watched first hand what cancer does to a person, I watched 5 perfectly fit humane beings one day before receiving the Dx go to a bag of bones almost unrecognizable in very short time.

     

    How can ignorance by the medical industry be called doing the best they can? Aren’t Doctor’s supposed to heal? Aren’t they supposed to use whatever tool available to heal??  Why aren’t the Doctors standing up against the Insurance Co. in their patients behalf, the very same patients they are sword by Hippocratic Oath to heal? Insurance Co. are running their practices, and they cow taw to them.

     

    We don’t put up with Ignorance of the Law, but we except Ignorance in the Medical Industry and call it doing the best they can? When are they gonna be held accountable for their ignorance? When they turn a blind eye to what they know is not right, why aren’t they being held to the highest standards on Earth???

     

    Please take a look at this link NO it isn’t cancer, but its more of what you call “Doing the Best they can”!

     

    http://iansvoice.org/default.aspx - http://iansvoice.org/default.aspx

     

    If you do click the link, please click the tab on top “Safer Vaccines” and read plz.

     

    You speak of anger ~ You bet I’m angry! Just open your eyes and heart, and than tell me you except anything but a Cure for Cancer and all other major illnesses! Until we all get angry and put a stop to all this, none of this will go away.

     

    Connie ~ Please don’t misunderstand I am not advocating one form of treatment over another! Whatever you have faith in is ultimately the RIGHT course for that individual! I support all of my sisters, in whatever they chose to do. If you believe Bubble Gum will cure you, than I’m all for it!

     

    It seems that because I chose not to have Chemo, I am not with you! Why is that? This isn’t a case of one side or another; this is about joining together for the same cause, a cure of cancer!

     

    I best end this because every time I look up there is another post!

     

    Hugggggggggggggs,

    Bev

     
     
    PS
    I was resonding to the Thread Topic: Inaccurate test results
    How has my response been turned into a Chemo / Non Chemo discussion!  Dang I just realized I'm defending something I didn't even SAY! My anger as you all have deterimined I have "to set the record straight" is their cavalier attuitude about neglect in reguards to our health!


    -------------
    Dx 2-10-09
    Er neg Pr neg Her2 neg 1+
    Double Mastectomy 3-2-09
    2.7cm grade 3
    Lymph Nodes neg
    NO reconstruction, NO chemo
    KNOWLEDGE IS POWER


    Posted By: Nancy
    Date Posted: May 31 2009 at 5:41pm
    To all,
     
     
    I posted this in the resource forum yesterday, but not everyone has the time nor the energy, with all you are enduring, to go there and read, so I thought perhaps this may be of interest. Mainy had given this to me.
     
    I made the mistake of sending it to my Lori, which of course when seeing what her D levels were last week, she can well imagine what they were at dx. The prognosis is not good for recurrence or survival from breast cancer if D levels are low when dx. But of course no one will ever know that due to the fact that probably one in 500,000 doctors ever check your levels at dx, or for that matter ever...unless you tell them you want them checked. Then you will most likely have to give them an explanation.
     
    Just one more flaw with the medical profession, of which I have very little respect, primarily due to the fact that they are led by the nose (not really my choice of word), by the drug companies, and if a cure is found, they (the drug companies) will go out of business. That's not going to happen any time soon.
    Hugs,
    Nancy
     
    http://www.vitamindcouncil.org/research.shtml - http://www.vitamindcouncil.org/research.shtml


    -------------
    Nancy
    DD Lori dx TNBC June 13,2007
    Lumpectomy due to incorrect dx of a cyst
    mastectomy July 6 2007
    chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
    28 rads ended Jan 2008


    Posted By: dmayes
    Date Posted: May 31 2009 at 7:33pm
    Nancy,
     
    Do you know how long it takes for your levels to come up.  I thought my doc ws doing the Vit D test - he said he did not.  I have been taking vit D 1000mg since meeting him, and wonder if I should now get a test done - just to see the line in the sand?  I guess I can go to my new doc and ask for one ?  Or if I take any 3 weeks of vitamins and get that added to the bloodwork - how much inprovement can I expect.
     
    As my onc is pretty switched on - and I am sure I asked him to run the test as I read that in the info - I was a bit disappointed that it wasnt there.  Maybe he doesnt liek telling u s- as we know we are very low - then maybe we focus on the mortality and recurrence and dont put our energy into gettign better and enjoying our life.
     
    Again - I am going to ask why they dont test and track that statistic - he seems very genuine and does know about the benefits of vit D.
     
    Ah - the day 3 bone ache is beginning- hope the benardyll kicks in and gives me some slep tonight - last day to take it.
     
    I am forwarding this on the my friends who kids are celiacs - might be good for her to read and maybe give vit d to her kids.
     
    Sending you hugs and healing energy
    Debs  


    -------------
    Debs | Laugh every day, Love every minute.
    Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA -
    Cytoxin/Taxotere x4 end Jul09.
    ReCon surgery March10.


    Posted By: mainsailset
    Date Posted: Jun 01 2009 at 9:42am
    Debs, my doc put me on 50,000 iu of the D2 for 4 weeks and I went from 19 to 28 in that time frame....hope that helps.
     
    Good for you for sending this on to your friends whose kids are celiac, I did the same for cousins and friends, and it brings up an interesting point, that celiacs often suffer from mal absorbtion, and perhaps we all do....


    Posted By: Nancy
    Date Posted: Jun 01 2009 at 12:19pm
    Hey Debs,
     
    I really don't know how long it takes for the levels to come up, but I will email Ronda and ask her. I do know that when you go for the D level test you are to be off D3 for a few days, and that way you get a correct level....if you have the right lab testing for it. Ask where they are testing for D levels, and if it is Quest labs, tell them you want them sent somewhere else.
     
    You also need to ask him  if you can take more than the 1000, as that is not much for someone dx with cancer. A small child can take 2000 iu's daily and safely, so the vitamin D council says as an adult you require much more. From what you have told me about your onc, I too am disappointed for you that he did not do your levels. As I said in another post as soon as a women is dx with bc, levels should be done, and I think that should be a requirement.
     
    For you not to have all tests results is just unthinkable, as how then are you supposed to manage your life. It's not a question of him liking or not liking to tell you, that is his responsibility and again...."first do no harm". He is putting your life in jeopoardy by not doing the tests and by not telling you the results. Also if your levels are low, then...if he is knowledgeable as to the amount your body needs....he should up the dosage, knowing that your immune system is not functioning properly. That's why we get cancer and many other diseases.
     
    Since D3 is a hormone, it should start helping you almost immediately. You say you are having trouble sleeping, and Lori took Unisom and that helped tremendously. It is a sleeping aid that is not addictive. You might want to ask if you can take Melatonin also, which is also a hormone...a natural hormone one our body makes until about age 45 and then drops off sharply. I don't remember your ageEmbarrassed
     
    Hugs,
    Nancy


    -------------
    Nancy
    DD Lori dx TNBC June 13,2007
    Lumpectomy due to incorrect dx of a cyst
    mastectomy July 6 2007
    chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
    28 rads ended Jan 2008



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