TNBC Polls & Surveys - Still wonder..but what if

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Still wonder..but what if

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Forum Name: TNBC Polls & Surveys
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Topic: Still wonder..but what if

Posted By: cdenunzio
Subject: Still wonder..but what if
Date Posted: Jul 11 2010 at 12:42pm

Some of you might remember but last Sept 09 my wife Heather 36 passed away. She had a TNBC diag in Feb 2008 with only one lump about 2-3 cm, they scanned the rest of her over the next few visits and was clean. I strongly believe that if things were left alone in her case, never biopsied she would still be alive today. As if the gates are opened and the tumor cells are released into the body. I know the Dr's believe thier magic juices can kill but not in the case with her tumor type. She was tested for the BRCA early on the next month Mar 08 and negative. I know hindsight is 20/20 and I am speaking probably out of emotion. It just bothers me and will get over it. Just a thought for some of you just diagnosed maybe to contemplate things a bit. Heather probably was given every concoction of chemo mentioned on these forums and nothing worked. 18 months from biopsy gone....

Im doing ok, just venting.

Replies:

Posted By: ann u
Date Posted: Jul 12 2010 at 2:39pm

I'm so sorry about your wife - all of us here know that TNBC is a "different" breast cancer. Sometimes no matter what you throw at it, nothing works.

I too, have thoughts running through my head all the time of the "coulda, shoulda, woulda" type. In the end, you have to be comfortable with the decisions that you make.

I know you are just venting, and we all do the same -

Ann

Posted By: LauraT
Date Posted: Jul 12 2010 at 2:53pm

Cdenunzio,

I am incredibly sorry for your loss-this disease follows no rules. Thank you for speaking out of your experience and wanting to help others. Your anger and emotion are absolutely understandable.

Laura

-------------
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva

Posted By: zoomommy2
Date Posted: Jul 12 2010 at 4:09pm

Cdenunzio, you have every right to vent and be angry. Your wife was way too young to be gone. There seems to be so many different outcomes regardless of the stage of our cancer and the treatment we get. We just take one day at a time. Praying for your healing.

Lee in Denver

-------------
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda

Posted By: trip2
Date Posted: Jul 12 2010 at 6:37pm

Hi,

I certainly do remember Heather and so very sorry for you and her family.

We so enjoyed Heather, such a lively one, a fighter, a real trooper. Her loss is heartbreaking. I was just looking at her picture yesterday in this website she had submitted.

My condolences and let me tell you that what you are doing is very normal. You are in pain, grieving.

We as patients with TNBC look back and wonder all the time although we can't change a darn thing. It is a normal human behavior.

Best wishes to you,

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

Posted By: 123Donna
Date Posted: Jul 12 2010 at 9:39pm

Cdenunzio,

I can feel your pain and anger over the loss of your Heather. All of this just seems so unfair. Thanks for feeling open with us enough to vent and express your anger.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Debris
Date Posted: Jul 13 2010 at 12:07pm

God Bless you, Cdenunzio, and give you healing.

Deborah.

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs

Posted By: dmwolf
Date Posted: Jul 13 2010 at 11:24pm

Of course we remember. Your darling Heather has left her mark on all of us. I wish you peace, healing, and loving remembrance.
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: Lillie
Date Posted: Jul 14 2010 at 8:43pm

Cdenunzio,

It is perfectly normal for you to ask "what if". We all do it at times. I am so sorry about Heather, she was a beautiful person and too young to die. Thank you for sharing your feelings with us. God Bless

Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED

Posted By: chloesmom
Date Posted: Jul 14 2010 at 10:07pm

Cdenunzio,

Venting is a good thing- sometimes we need to get everything out, it helps with the healing process. Asking 'what if' is totally normal. I think everyone on this forum, at one point or another, has asked themselves, what if...

Your wife Heather was a beautiful person and way too young to die. TNBC is a beast. My Mom is battling this disease now, but the end is near, as she is on hospice.

Keep Heathers memories alive for your children.

Dana

Posted By: MsBliss
Date Posted: Aug 27 2010 at 8:16pm

Dear CD---

I completely relate to your "what if" scenario. I ask myself the same thing with regard to my sweet mom, and for that matter, to other losses I have witnessed or been a part of.

My approach to this world of cancer is completely dispassionate. I don't want the feel good aphorisms, I want the truth and the facts, so please forgive me if I write harshly.

It is a good question you pose. When your dear wife entered the medical paradigm, did their potions, surgery, and high doses of radiation, repeatedly, make things worse? Not only that, did they leave critical issues forgotten?

In my opinion, this happens. But part of the reason is that we lay down and don't participate in the process, asking questions. There is a good reason for this---they discourage it and we are frightened. We know nothing of medicine or cancer when we walk in those doors. Even doctors who have cancer are overwhelmed.

It is unlikely that the excision surgery spread Heather's tumor. Cancer surgeons are trained to respect the cell to cell risks--even excising the tracks left by biopsy core needles for this reason. They don't mess around. But it is now known that morphine given after surgery depresses the natural killer cells. The NK cells are cancer sentinels--we need them exactly when they are being suppressed. But here is the shocking state of the art. When I took my independently ordered immune study lab results to my first oncologist, who by the way is one of the top TNBC researchers in the country, he/she looked at my numbers and said to my face "the immune system has nothing to do with breast cancer". I said "What? Are you serious?". "Yes, the immune system doesn't seem to work well in the breast". This contradicts every reasonable conclusion being made in cancer research today. Why did he/she say this? Is he/she just stupid? No, of course not. He/she just wanted me to stop being interested in my disease, to shut up and take my medicine. He/she doesn't have time for this. This is a common scenario, one that many of us run into.

The other issue you mentioned was whether the chemotherapy besides being ineffective, did it make things worse? It is entirely possible. Aside from the reversible collateral damage that chemo does to the body, there are simply subtypes of tnbc that are "nuclear powered"; in other words, a body weakened by chemo or not, the cancer cell type is very strong and adaptable. One type is the cancer stem cell, and tnbc tends to have this in abundance. But what researchers are learning is that these cancer stem cells can be unaffected by chemo. Cancer stem cells divide slowly and chemo targets fast cell division. This is just one scenario. There are many. Another scenario is the problem with microtentacles. One chemo agent, I won't name it, will cause microtentacles to become longer and more active. The microtentacles make it possible for the dislodged cancer cell to embed in new areas, especially the blood vessels. Without the long tentacles, the cancer cell would be pushed through the blood vessel, fragment and die. This same agent will cause tumor shrinkage but cause circulating tumor cells to skyrocket in numbers. Fortunately, they give this chemo agent as more of a "mop up" therapy, after most if not all of the cancer cells have been eradicated. It has it's place, properly applied, but for some, it is problematic to say the least.

As for the question I pose, did they leave critical things forgotten? Well, yes they do. In my extremely harsh opinion, the neglect that some oncologists do with regard to vitamin D testing and raising vitamin D levels borders on criminal negligence. I am allowed to say that. It is how I feel. Not only do most oncologists NEVER test vitamin D levels, they don't insist on levels above 30ng per ml, they prescribe vitamin D2, a biologically inactive and cheap form of D to raise their patient's level, they don't address D3 resistance in cancer patients, and they don't tell patients that high levels of serum D3 MAKE CHEMO WORK BETTER. They know this. They have known this for many years, yet they are mostly silent.

Again, my apologies for any abrasive language and opinions. I lose my "editor" when I write about this subject.

I hope you see that your coming back here and venting your concerns was not only healthy and healing, but a wonderful testament to your love for Heather. You have given a tiny, nagging voice inside a place to express itself. It is important and I thank you.

All my best,
Bliss

Posted By: trip2
Date Posted: Aug 27 2010 at 8:56pm

Interesting Bliss,

One item you discussed, the doc saying the immune system doesn't factor in caught my eye. Actually the whole paragraph as I had never thought about that angle before. I have been rebuffed by my questions, assumed, which could be dangerous of course, either they are too busy or don't know the answers I need.

Now enter your thoughts as to let's just throw this patient off track and tell them this or that doesn't matter, hmmm, very well could be, thank you for expressing your feelings/info, found it all interesting.

You are always welcome to post your opinions, no apologies needed.

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

Posted By: CiGi
Date Posted: Aug 27 2010 at 9:50pm

MsBliss - Interesting reading. I agree that doctors don't take vitamin D deficiencies seriously. I have hypertriglyceridemia (high fats in blood), two years ago my triglycercides were 2400 (normal is 150) and it cause pancreatitis and furthermore caused ARDS (lung failure). I almost did not make it (40% don’t)! My blood is closely monitored and late last year my levels went from 300 to 1800 so there was great concern and I had massive blood work and all they found was that my vitamin D was 10. They advised me to take D3. Since the vitamin D deficiency had nothing to do with my condition, they paid no mind to it. I asked them if I was at risk of cancer and no one seemed to care, I asked my doctor, I asked my OB, I asked my pulmonologist, no one cared. Months later I found my lump and here I am. They still don’t take it seriously. I asked to have it tested before my last chemo treatment last week, I asked today since I was there getting my blood counts and she told me she didn't see any test for D. WTF!!! How many doctors do I need to keep asking to test it and they don't! I have no clue where it is at. It makes me so angry. Why don't they see the importance of it??? I keep taking my D daily praying that when I finally get it tested that they are good. I'm thinking of doing it myself, saw a post on here about it.

-------------
Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.

Posted By: 123Donna
Date Posted: Aug 27 2010 at 10:54pm

Bliss,

Your analysis and knowledge is very thorough and hits the point.

I remember reading the study about morphine suppressing the nk cells. It scared the cr*p out of me because after the mastectomy, that's what they give you for the pain. Oh well, I can't change what's done. Like you, I think knowledge is power and I'd rather know than be left in the dark.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: 123Donna
Date Posted: Aug 27 2010 at 10:55pm

Cigi,

You can order the Vit D3 in-home test kit. Here's the link:

http://www.zrtlab.com/vitamindcouncil/ - http://www.zrtlab.com/vitamindcouncil/

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: MsBliss
Date Posted: Aug 28 2010 at 1:26am

CiGi, I am not surprised that they are not following up with the D testing and advisement. When I was diagnosed, my level was 16. But they didn't tell me. They did bill me for the test, but they didn't think it was important enough to tell me. Then, they prescribed D2 which I stupidly took for 3 months. So, what do you do? Take control. Make it your business to get this test done; in the interim take at least 2000IU per day, and take a little sun. I know many people who take 2000IU per day as a matter of course. I have taken 10000IU per day since my last test! I've had my levels tested and it went up to 74 when I was getting sun, now it is around 60 even with taking 10000IU per day. But mind you, when you take high doses of D, you have to monitor serum calcium because D will cause circulating calcium levels to go up. For me, I take 150 micrograms of K2 with the D. The K2 prevents any circulating calcium from collecting along the artery walls, which is one of the concerns of supplementing with high amounts of D. But at levels of 2000IU a day, this is not high enough to cause this.

Posted By: MsBliss
Date Posted: Aug 28 2010 at 2:29am

Dear Donna,

Yes, I know what you mean about learning about the morphine connection. As cancer patients we are already on notice that something is amiss with our immune cells, we don't need to add to the problem! But we are likely all in the same boat, because the use of morphine during and after surgery is so common. We can ask for the use of a non-morphine alternatives, and / or use immune boosting supplements and maybe include the short term use of mistletoe because at least it couldn't hurt and it may help. Also, get out of the hospital as quickly as you can. Staying in the hospital for extended periods further disrupts the immune system. Must be those gowns they make us wear!

All my best,
Bliss

Posted By: trip2
Date Posted: Aug 28 2010 at 9:20am

Cigi, now that I think about it, I asked my Cardiologist, whom treated me for about everything other than Cancer at the time to do the simple Vitamin D test which they did, numbers were fine.

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

Posted By: CiGi
Date Posted: Aug 28 2010 at 9:43am

Thanks Pam. I ask all my doctors to test it and I see a lot of them and I'm still waiting. I'm a very nice, polite and patient person so maybe they're just not taking me serious. I think I need to be more demanding and make it very clear that I'm tired of waiting. My onc is really going to hear from me because she said they would test.

-------------
Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.

Posted By: 123Donna
Date Posted: Aug 28 2010 at 9:59am

CiGi,

As a rule of thumb I've read that to increase your Vit D level by 10 points you need to increase your supplementation of D3 by 1,000 iu's. For example, if your level is 10 and you goal is 60 or higher, you'll need to bump it up by at least another 5,000 ius a day. It takes time for it to get into your system so you won't see an immediate result. It may take a couple of months. I've been testing mine every 3 months at first to judge how I was doing and to see if I needed to increase my dose. I take between 7,000 and 8,500 ius a day and my levels at the last test was 68.

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: CiGi
Date Posted: Aug 28 2010 at 10:24am

Thanks Donna. I've been taking D3 4,000 ius per day. Doctor prescribed me 1,000 ius per day, which I took for months until I was dx. I increased to 2,000 ius at that point since I thought it was not enough. Since being on this site I increased to 4,000. I'll increase it again until I get it tested just to be safe.

BTW, love you're new profile pic, you really look great and so happy! I'll add a pic one day, when I find one that I like.

Posted By: trip2
Date Posted: Aug 28 2010 at 10:41am

Cigi,

One of the frustrating things of getting this disease is that we have to speak up, possibly pester or even fire a doc who is not doing what it is you feel you need.

Being diagnosed with TNBC has made a semi-monster out of me at times because of if I didn't stay on top of inadequate Oncologist's or docs (my experience) who wouldn't give me a simple test, such as one time I wanted the brca 1/2 and was ignored until I said my piece, then I still wouldn't have answers.

We are our best advocate, we pay them to give us the best care. Stand in the middle of the office if you have to until you get what you need. Your care is of utmost importance. When your Onc does their regular blood panel can they not work it in? Yes stay on them, sad to say, we sometimes have to..

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

Posted By: 123Donna
Date Posted: Aug 28 2010 at 10:52am

Cigi,

I agree with Pam. The Vitamin D test is just a simple blood draw. When my onc does it they just draw another vial when they're testing my blood. Keep pestering them until you get what you need!

Thanks for commenting on my new pic. Yes I was so happy - we were on a family vacation that I couldn't have imagined a year ago. Last summer I was recovering from surgery, hairless and going through tx thinking my life could be over. I've been changing my pics, first with the wig, then when the hair started growing back I kept updating it.

Hugs,

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: MsBliss
Date Posted: Aug 28 2010 at 4:14pm

One very important tidbit for all you vitamin D testers! If your test results are processed by Quest Labs, you have to divide the result by 1.3. They have a different calibration and have stubbornly refused to alter this. Your true number will be lower than the report. Also, 30ng is too low. That number is not a robust enough number for us. Go for at least 60. At least.

Corrected for clarity---Quest reports D levels that are artificially high. Your true number is actually lower than the report will say.

Posted By: 123Donna
Date Posted: Aug 28 2010 at 4:53pm

MsBliss,

You are so right. Constantine Edge-CAM says it should be 66 or higher for anti-tumor effect.

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: CiGi
Date Posted: Aug 29 2010 at 4:35pm

Thanks everyone for your help. I will throw a tantrum if needed to get it tested. My original test done was through Quest and it was 10. I'll need to make sure to ask which lab they send to. Thanks for the tidbit on the K2 and calcium. Need to be concerned about that because I do have hypertriglycerdemia which when my fats go up, it brings up cholesterol, so always concerned of anything building up in veins. I had an ultrasound done on my veins 2 years ago to make sure there were no buildups or bloodclots and was good then. Don't want any issues with my ticker! Like I'm not putting it through enough.

Talk to ya gals later. Have a great week!!!

Carol (CiGi)

Posted By: cdenunzio
Date Posted: Aug 30 2010 at 1:11pm

MsBliss, thank you for your kind words and honesty. "what if" will eventually apply to everyone of you. In our situation, decisions were made based usually on the docs recommendation, in addition when things got worse we went to Mayo (apparently the leaders in breast cancer, but aren't they all..) for another recommendation, they were consistent. We did 'fire' the first onc but were surprised to find the 2nd onc at Baptist in Jax wanted to take the same approach. I was the complete opposite of your opinion in participation. I attended every appt, every chemo, every surgery, every plural, etc..I researched the PARP before most docs even knew of it. Practically read every thread on this forum, read the very morbid statistics of TNBC, I was not frightened and if anyone spoke discouraging about Heather, I would rip them, including the docs, nurses, including family and friends.

One can break down issues to molecular, DNA, minerals, etc until red in the face but what I saw was a medical community who was clueless in what they were dealing with. Treating symptoms and calling success on anything that changed for the better. A great example is tumor size, when its a .5mm smaller we should double the dose. But doc, my arms and neck hurt, doc says you shouldn't have pain, the other patients dont. here take some 7.5 hydocodone apap, whatever its called. But she really needed morphine or something. I demanded the doc give her stronger, he was worried about the DEA or something, that is BS. He finally obliged. Not until the next MRI, Pet, x-ray, ultrasound and plasma-beam(sarcasm) were used that lo-and-behold we have mets in your arms and neck..Doc says, holy smokes this isn't supose to happen at the same time we are shrinking the other one by .5mm. Its all sort of pull the trigger and see what happens thing. This is were I asked the most important question all of you need to 'How many triple negative patients have your treated and what was your outcome'. I will leave it at that.

Another place that pissed me off was these Cancer Centers of America. My conversation with them lasted 5 minutes. There first words were not I am sorry about your wife, what type of cancer, etc but what is your insurance number.

MsBliss I dont believe vitamin D would have helped my wife. Her cancer all the sudden spread everywhere only after being poked, biopsied basically messed with but we asked them to.

Posted By: trip2
Date Posted: Aug 31 2010 at 12:02pm

I agree with what you have said, it is a hard truth to realize.

I felt like during my treatments (twice) they were just fumbling for something that would stick, like spaghetti on the wall. Not very comforting when it is you or someone you love. Truth be known I still feel that way when it comes to my monitoring.

Interestingly atleast for me, I have found now going thru another serious health issue that various docs in that specialty field do not seem to agree, like the nightmare is back but in another form! What is a patient supposed to do, is it like this for all who deal with a serious health problem??

Doesn't seem to be inclusive of TNBC for me, anyway.

These are my feelings folks, I've rambled enough recently, peace...

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

Posted By: cdenunzio
Date Posted: Aug 31 2010 at 2:29pm

Ladies - please, please and pretty please - do not let me steal any hope from you. Like I said earlier I am going thru my emotional thingy dealing with my loss. I read my post and sound negative, maybe its best for me to not think about this topic right now. It is not my intention to make you lie in your bed at night and deal with the 'hard truth'. This is wrong for me and yes you asked I vent and say whatever but in hind sight I would never have spoke to Heather this 'hard truth' and would be positive and reassuring. Sometimes its best not to know. I surely don't know what will happen with you. My wife died because ....I can put a million periods in that sentence to represent a pause of the unknown. I want to believe she is in a better place without pain and worry but who would steal a mommy from little children. It's sucks. I am sorry for not being sorry. You are beauty and wish all of you comfort and peace.

Chris

Posted By: zoomommy2
Date Posted: Aug 31 2010 at 4:52pm

Chris,

Don't apologize for your feelings. You and your children have suffered a loss that I can't even imagine. Your feelings are what they are and this is the best place to vent. You aren't making us deal with the thoughts we don't already have. Vent when you need to.

Lee in Denver

Posted By: Debris
Date Posted: Aug 31 2010 at 6:07pm

Chris,

May you find Peace in time - but now, let the hurt and the anger out! This is one place you can feel safe doing so.

God Bless

Posted By: trip2
Date Posted: Aug 31 2010 at 8:03pm

Chris,

Bless your heart, as already pointed out, we have learned many of these hard truths thru our own journey's or those of our sisters.

By all means, this is the place to say whatever is on your mind, we welcome you and your thoughts, your contribution to this wonderful community and our hearts break for your loss. I so wish there were answers. All we can do is our best at the moment.

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

Posted By: overwhelmed
Date Posted: Sep 01 2010 at 12:26pm

So, I am reading that Vitamin D2 does no good and D3 is needed? My Vit D level was at 22 before chemo started. It was tested by my gyn at my request. She recommended 1000mg D2 daily, which I have done since. So, has no good since I haven't been taking D3?

-------------
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-

Posted By: MsBliss
Date Posted: Sep 01 2010 at 8:47pm

Dear Over,
If you are taking over the counter D, then it is D3. D2 is only available thru prescription at much higher strengths.
Bliss

Posted By: overwhelmed
Date Posted: Sep 01 2010 at 9:09pm

You are right. I just checked and I've been taking D3 all along. Duh!

-------------
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-

Posted By: 123Donna
Date Posted: Oct 04 2010 at 11:15pm

MsBliss wrote:

. . .But mind you, when you take high doses of D, you have to monitor serum calcium because D will cause circulating calcium levels to go up. For me, I take 150 micrograms of K2 with the D. The K2 prevents any circulating calcium from collecting along the artery walls, which is one of the concerns of supplementing with high amounts of D. But at levels of 2000IU a day, this is not high enough to cause this.

I have a question about Vitamin K. Should it be K2 only or a combination of Vit. K, like K2 (menaquinone-7, menaquinone-4) and K1?

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Marti
Date Posted: Oct 05 2010 at 4:19pm

To Cdenunzio: I am so sorry for the loss of your wife, Heather. I am new to this site today. I was diagnosed with triple negative breast cancer Jan. 8, 2008. I had a lumptectomy on Jan. 16 and my tumor was almost 3 cm. Like your wife, I was told that my body was clear after surgery and I went on to have radiation and chemo. But, I survived. However, the effects of chemo have greatly reduce the quality of my life since I was given cytotoxin, taxotere and adriamiacin. I have regreted taking the chemo but the cancer has not returned. Hearing about Heather helps me to understand that we simply do not know much about triple negative cancer and, in fact, there is no way to predict its return whether we take action or not. I do not want to by cynical but it does seem to be in the hands of God. I pray that you find peace. It is a difficult thing to do. I lost my firstborn child, a little girl when she was only 2. I know loss. May God show you the way to peace and may you understand the love of God in your lifetime and find a way to move forward knowing that closure is merely a genteel phrase and not a reality. Time eases the pain but your heart records the loss of a beloved souldmate forever and ever. God Bless.

Posted By: hummingbird10
Date Posted: Oct 05 2010 at 9:35pm

Chris,

I just read all your comments and all the responses. Although I did not know your Heather since

I just came here after this May's diagnosis, I can tell everyone loved her here on TNBC blog.

I believe strongly that you have every right to vent your feelings about her journey and her

treatments. We all need to know about this. The frustrations are very understandable and

very normal. As Ms. Bliss said in her "on-point" comments we need a lot of answers.

TNBC is very complex. And it is disappointing to hear Mayo in JAX didn't have all the

answers for Heather. I don't know what went wrong. And yes, it certainly "sucks."

You are right, they don't know enough to customize our treatments. One day they will.

I've been told that may be pretty far down the road. In the mean time we all just

cont. to take and do what is suggested. But, like yourself and Ms. Bliss and others here

WE WILL CONT> TO SAY QUESTIONS, regardless of who doesn't like it!!!!!!!!!!!!

Peace and love to you and the children and Heather,

Hummie

Posted By: TNBC_in_NS
Date Posted: Oct 05 2010 at 10:32pm

Chris:

I am so sorry for the loss of your darling wife, Heather!

May you and the children find peace and a new "normal' as some of us have had to find too.

Bless you on your journey, and please post here when you need to, we are here to support you!

Hugs, another sister on the journey, Helen in NS

-------------
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear

Posted By: hummingbird10
Date Posted: Oct 05 2010 at 10:58pm

Chris,

correction to my post above...

last line should read.... We will cont. to ASK (not say) questions, regardless of who

(referring to all medical personnel) doesn't like it.

Hummie

Posted By: TracyAMac
Date Posted: Oct 06 2010 at 8:28am

Chirs, I am so sorry to learn about Heather. Your note really touched me and reminds us all of how unpredictable TNBC, and life in general can be. For myself I go from days of "bring everything on to fight this" to "I wonder what would have happened if I had left things alone." Thanks for sharing your story and your thoughts

Tracy in Toronto

-------------
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial

Posted By: hummingbird10
Date Posted: Oct 06 2010 at 9:13am

Dear Chris,

Keep posting here. Heather's additional legacy is she is providing her Triple Negative

Sisters with information about what happened to her in the hope that something

can get better---and you can agree there's a LOT to get better in the overall

treatment for us! You guys are invaluable with all your information.

Welcome here and God bless,

Hummie

Posted By: diane1234
Date Posted: Oct 06 2010 at 9:43am

Wanted to post to say that I think of you often. YES THIS DISEASE IS HORRIBLE!!!! AS I sit here unable to take a treatment because my counts are NOT GOOD. How long will it take to destroy me? We just dont have the answers.....OH GOD JUST HELP US!!!!!!! PLEASE BE WITH CHRIS AND HIS CHILDREN.......

Diane

-------------
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.

Posted By: hummingbird10
Date Posted: Oct 06 2010 at 10:16am

Dearest Diane,

What can we do to help? I'm sending hugs and kisses, but what else can we help

you figure out? You are so right about this disease--it sucks! Which counts are low,

the RBC or the one that they say can't get below a certain no? My counts are just

hanging on a thread since starting the 13 weekly Taxols. Are they giving you anything

to bring counts up?

Diane, you must REFUSE to let anything destroy you. What about diet? What about VitD3?

Tell us more so we all can at least throw in our 2 cents.

Thinking and sending more HUGS and KISSES for your recovery NOW!

Love,

Hummie

Posted By: Ashlyn
Date Posted: Oct 07 2010 at 1:00pm

Hi Diane

I am deeply sorry to hear that the cancer is back. I am currently reading a book called "Healing with Whole Foods" by Paul Pitchford, 3rd edition. It's a big book 2 inches thick but I find it easy to read, well written and informative. I agree with Hummie re diet.

God's richest blessings.

Ashlyn

-------------
32y-o, married, one 5y-o girl. Dx 13/5/10. TNBC, stage 2A, sentinel node biopsy 2 nodes+. Neoadjuvant chemo 5 x EC. Bilat mast & axil dissec on left, Oct 10. 0/13 nodes. No evidence of disease.

Posted By: diane1234
Date Posted: Oct 09 2010 at 12:53am

The platelets are to low. We have delayed chemo one week. Hopefully we can go next week and I will be able to get chemo. Yes it is tough. I manage by taking one foot in front of the other. I am also scheduled for scans next week. Let us just KEEP ON PRAYING.....

Thanks for the concern, YES I am doing the D3....I do eat the best I can. I have a pretty good book called Killing Cancer with Food. It is an interesting book.

Chris I think of u and Heather and the kids so often......

May God Bless Us All,

Diane

Posted By: zoomommy2
Date Posted: Oct 09 2010 at 1:15am

Diane,

Praying for your platelets to get back up where they need to be for chemo to continue. You are a fighter and an inspiration!

Lee in Denver

Posted By: trip2
Date Posted: Oct 09 2010 at 10:51am

Diane all my best wishes for good news on the scans,

Let us know...

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

Posted By: 123Donna
Date Posted: Oct 09 2010 at 11:14am

Diane,

Thinking of you and wishing for good scans.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: hummingbird10
Date Posted: Oct 09 2010 at 2:03pm

Diane,

However you do it, eat your way to higher platelets!!!! We are all in your corner,

rooting you on. Here's for good scans. Keep thinking positive.

Hummie

Posted By: MsBliss
Date Posted: Oct 09 2010 at 6:13pm

Diane,
When did you start taking D3, how much are you taking and do you know what your levels were/are?

Bliss

Posted By: hummingbird10
Date Posted: Oct 09 2010 at 7:50pm

Open Question: What are some of the great foods to help stop this disease?

Maybe we need to start a list. We can all add something that we've been told to

include, something we've read about, etc.

1. berries: straw, blue, rasp., bl. rasp, bl.

2. pomegranates

Hummie

Posted By: diane1234
Date Posted: Oct 09 2010 at 11:15pm

Bliss..... I started taking the D3 after my original dx. I was at a 27. Last i was checked. Right after the mets were confirmed and it was 33. I had to take 10000 iu a day to get it up. MY CHOICE TO DO THAT. I hope this helps....

Lots of Love,

Diane

Posted By: T1N0M0
Date Posted: Nov 27 2010 at 10:51pm

What is the RDA for D3? My oncology nurse practitioner told me to take 2,000 iu a day.

-------------
Dx Aug 3 2009 - Lumpectomy -1.2cm - Grade 3 - 0/3 Sentinal Node - 4 AC - 12 Taxol - 29 Rads - Finished 6/18/10

Posted By: krisa
Date Posted: Nov 27 2010 at 11:28pm

T,
I take 10,000 units of vitamin d3 a day( I may miss a day here and there)I was taking 5000 units a day and having my blood checked every three months.. The trend went from 21 to 60 in a year and then started to go down last tested it was 49. So I upped the dosage and will be checked in January.

Posted By: 123Donna
Date Posted: Nov 27 2010 at 11:53pm

T,

There is another thread that has lots of information about Vitamin D3. Please check it out. I take 7,000 to 8,000 iu of D3 a day. I was checked a few months ago and my levels are now around 66.

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page1.html?KW=Vitamin+D3 - http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page1.html?KW=Vitamin+D3

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Pink Warrior
Date Posted: Nov 28 2010 at 3:14pm

Hummie,

V8 makes a "VFusion" juice with Pomegranate and Blueberry juices. I keep it in my fridge at all times.

Kim

-------------
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin

Posted By: Katastrophe
Date Posted: Dec 08 2010 at 3:14am

Hi guys and gals,

I have been reading all your posts and I have been contemplating what to write that has not already been said by all of you wonderful ladies to Chris.

The thing that springs to my head over and over again is this .... We like to think that when we get sick, that if we go to the appropriate doctor he will find a solution and miraculously cure us. If he does, then he gets our undying gratitude, (and we get to live) if he does not, then we start to question every single thing that has been done to us from start to finish and we want desperately to place the blame. Was it his/her fault? Was it our fault? Did we choose the wrong course of treatment? Did I wait too long?

The list is endless. My point here is this ... We like to believe we have choices in our lives about which path we should take to make our lives full and rich and healthy and happy, but the truth is from the moment we are able to decide things for ourselves we make errors ... from brushing our teeth incorrectly (causing us tooth decay) to choosing our life’s partners (only to find out in some cases, they are dicks!)

The thing is, at the time we thought that we were doing the right thing.

They say, “the road to hell is paved with good intentions”. I believe, that our destiny is preordained and the outcome is already written. We like to think that we have control on our lives, and when it’s out of control we like to find someplace or someone to point the finger at. When in reality it was simply just “meant to be”.

I am so sorry for your loss Chris. You need to focus on the fact that you have had a wonderful woman to share a part of your life with. She was lucky to have had a loving and caring man to share with her the good times as well as the bad. Some people don’t get that in their entire lifetime. Remember only the good, as the bad will eat you up and spit you out. I am sure she would not want that.

Luv Kat xxx

-------------
Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.

Posted By: zoomommy2
Date Posted: Dec 08 2010 at 4:15pm

Kat,

I, too, believe in the Plan and it's already in action. I do, however, believe that we have to help ourselves. I don't think if we lie down on the highway that God will save us just because that's not in the Plan He has for us. We have to help our doctors do their best to save us by being an active participant in our care. We can do all the right things and it may not work. I think that's the Plan working. I don't have all the answers or even many of them. Just my two cents worth.

Lee in Denver