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tasoulla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2010 at 10:01am
Hi Donna,
 
My mum has not much pain now and her arm is a little bit moving .
She has swelling in her armpit and in the arm and we are going to see the doctor on friday.
She is under medication for inflammation now.
 
About the D3 she is taking it(200IU) along with calcium and magnesium in the night after meal.She has a little stomach pain after receiving these 3 pills, and she's wondering if the pain is coming from receiving these 3 in the night or is better to have them in liquid.
When do you have your vitamin d3?(night or day)?
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2010 at 2:14pm
Hi Tasoulla, I take my D's in the morning and don't seem to have any reaction so it works well for me. I also take the gel caps, and I can testify that they have worked to get my levels up. My sis takes a liquid, but her levels are not rising as fast as they should. Could be the brand, don't want to say all are good or all are inferior here...
 
Glad the inflammation is not as painful. I'm still gonna make my bet that she has an awful case of Lympodema. Rats, that's just awful!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 12:58am
Hi Tasoulla,

I take about 7,000 iu of D3 a day now.  Around lunch time I'll take a 2,000 iu D3 and a 5,000 iu D3 after dinner.  I haven't noticed any problems with stomach upset.
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

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 7:43am
Another link talking about the importance of magnesium with D3.

http://www.vitamindcouncil.org/newsletter/more-vitamin-d-questions-and-answers.shtml
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

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tasoulla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 10:01am

Hi Donna and thank you for the reply!

Do you take along with the Vitamin D3 supplemsnt fo Calcium and Magnesium?
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tasoulla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 10:09am
Hi Mainy,
 
IS the 3rd week now my mum is under strong medication pills for the inflamation!!
She has physiotherapy sessions now(just started) adn still we didn't go for the follow up tests.
We wait for the inflamation to go......
We hear different opinions.......her surgeon told us not to hurry, to leave her relax and after having them.He advise us to have a mammograph per year and tumor markers only every 3 months.
In Israel the one hospital is advising for full body CT Scan and tumor markers, and the other hospital no tumor markers at all(very strange to advise that blood work is not necessary, isn't it?) and just an MRI per year.
In UK the doctor advise us just to go and see her and after to advise what is needed......
You can understand here in Cyprus unfortunately there is no good health providers! So we have to decide where to go and who to trust abroad.........difficult to choose........!
The only thing i didn't understand yet, is when it is advisable to start having the follow up tests after finishing all treatment! A standard must be followed all over the world, and not one doctos says one thing and the other doctor other things......!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 10:43am
Tasoulla, don't beat yourself up trying to find the standard of care. It seems to vary from doctor to doctor. The big thing that will help guide you and your mum is this:  Chemo has a profound effect on your body, as does radiation. You body takes awhile to come back up to speed, longer than you would like. Along the way there will be things that will crop up, such as the lymphodema that make you think something new is occuring when it's not, it's just a continued effect of the chemo.
 
So, please know that the chemo DOES mess up tumor markers. My doctor told me to expect 6 to 8 weeks where there's just no point in doing them after chemo (likewise they don't do them during chemo treatment). So the soonest you would expect to have tumor markers taken would be 6-8 weeks after chemo is finished.
 
For the scans, we've already talked about that. What you need to ask the doctors is how they will respond if you call up and say you have a persistent symptom. Will they bring you in, do tumor markers, order a CT scan, how will they respond. I say this because no matter how vigilant a doctor is, what you really want to know is how they will react to a worrisome symptom. So best case scenario is a doctor who will do 3 or 4 tumor marker tests a year for the first couple of years, some kind of a scan annually, and who will bring you right in if there is a worrisome symptom and do a scan & if possible a biopsy right away.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 1:42pm
Tasoulla,

Mainy has excellent advice for your mum.

In response to your question about D3, yes I take mine with Calcium and Magnesium.  Since I'm taking 2 pills a day (5,000 and 2,000 iu), I thought it was better to take them at different times in the day. 

Constantine over at the Edge-CAM recommends 66+ levels of D3.  I had been taking 4,000 IU a day and in the previous 3 months it only went up from 47 to 50.  It did not progress as much as I wanted so I've increased my D3 and will retest in a few months. 

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

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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 6:29pm
Donna, mine went down from 60 in December to 55.8 last week. After thinking about it I'm inclined to think I forgot to factor in the dark winter months for my levels! So if you and I both factor in the winter months, we're doin just fine! Wanna go fo an ice cream cone?
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 9:16pm
I am up to 31 from 12, in three months, taking 4800 D3 a day, 6 days a week.. so I am upping it to 7 days, and will probably take 6800 a day for the next two months and have it checked again.. doc wants it up to at least 44, I want it up to at least 54...  I am also sitting in the  sun 20 minutes a day... so we will see....
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 9:19pm
Great news Autumn!  I understand that the ideal is 75.  Mine was at 54 last month.  I had new bloodwork done on Monday so we will see how far I have come in one month.  I take 2,000 IU per day.
 HUGS, 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
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 10:07pm
Mainy,

Mine went down also.  I didn't realize it but when I had my bloodwork last week, my onc also checked my D3 level.  In March it was 50, now it's back down to 48.  I'm ready for that ice cream cone!

I went to the dentist today and after finding out I have some expensive dental work ahead of me, he told me his teenage daughter has low Vitamin D levels.  He said his wife wanted to have hers checked, but her PCP was against it.  The PCP is about 56 and very old school.  The wife kept saying she wanted hers checked and all he'd say was insurance won't pay for it.  She said I don't care, I'll pay for the test myself.  The dentist was very surprised when I knew so much about it.  I told him about the Vitamin D council website and he was very thankful.  
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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sugar77 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 10:57pm
I have no idea what my Vitamin D levels are...but it's not for lack of trying.  So far, I've asked my medical onc, rads onc, and breast surgeon to check my levels and they have all said they don't check that. My next step is to ask my Family Doctor and if she says no, then I'll find a Naturopath and pay for the test.  I've been taking 1,000 IU for the past couple of years but have recently increased to 2,000 IU. Since I live in Canada, I don't get the strong sunshine year round. The more I research this topic the more frustrated I get that I can't get anybody to check my levels.

Sherri
DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 11:11pm
Sherri, you can also go over to the Vitamin D Council and they have a test there that you can send directly in to them. There's also alot of articles there on what Canada is doing with the D. If memory serves the govt pretty much gave up on testing because it turns out everyone was low across your great land! Us TN ladies often test the lowest of any BC group and so its valuable to get with the program like you are.
 
Try the Vitamin D Council, I think it was fairly reasonably priced, don't know how they get stuff done border to border...
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2010 at 11:22pm
Sherri,

Like Mainy said the Vit D Council has an in-home test kit.  I don't know if they ship to Canada but you should check it out.  The cost of a single kit is $65 and multi (4) kits is $220 US. 

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 7:54am
This is new from the Edge-Cam on D3:

What's New  (01/22/10): Vitamin D3 in Triple Negative Disease

New evidence suggests that the triple-negative breast cancer (TNBC) phenotype has the lowest average vitamin D level and the highest percentage of patients that are vitamin D deficient, strongly suggesting that low vitamin D levels are characteristic of the triple-negative phenotype. In a case series presented by Christa Rainvillle and colleagues,  patients with the more aggressive triple-negative phenotype had a mean serum vitamin D level of 20 ng/ml compared to a mean of 36 ng/ml for normal volunteers (Whittier, CA).  Furthermore, this may help to account for the fact African American women have the highest breast cancer specific mortality rates, the lowest serum levels of 25(OH)D, and the highest incidence of aggressive triple-negative or basal-like tumors (39%), as Lisa Carey and colleagues found in their Carolina Breast Cancer Study of race, breast cancer subtypes, and survival, and the Rainville findings further support that lack of vitamin D transport into cells may contribute to aggressive phenotypic expression (especially of TNBC, but possibly also, evidence suggests, of aggressive HER2+ and IBC disease). Therefore, my strong guidance for TNBC patients is to assure consistent (3 consecutive monthly readings) optimal (66+ ng/ml) Vitamin D3 levels, with periodic retesting (every 6 months).


http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4698965&trail=20#1



Has anyone gotten their D3 levels to 66 or higher?


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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 10:29am
66 sounds very very high to me.  something that is good at an intermediate range is not necessarily better at a very high range.  remember, this is just advice from a particular individual: there is no research that I'm aware of that points to 66, or really even above 50, as more beneficial than just bringing it into the normal range.  too much vitamin D may actually provoke negative processes in the body, maybe even cancer, so don't overdose yourselves.
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 10:44am
Denise, I think if you'll look over at the Vit D Council they're indicating that until you reach the level of 50 your body is not even starting to store. They've been recommending a level between 60-90 for about a year now for patients who have cancer.
 
And yes Donna, several people here have tested above 60, I remember at least 3 but I don't know how well they have managed to maintain the level or what doseage they were using. I know I found that wintertime dropped my levels 5 points even though I maintained the 8,000 daily.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 11:59am
Thanks Mainy.  I should do my homework before I speak.  I guess at heart I am very suspicious of deviations from moderation in any direction, maybe based mostly on intuitive (not very well reasoned) grounds.  
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 12:00pm
My doctor doesn't even test for Vitamin D.  I see him in late June and will ask him for that test.  Right now I'm only taking 800 mg daily.  I have no idea what my level is.
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
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