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Old 12-27-2007, 04:29 PM   #1
AlaskaAngel
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Post More discussion about balancing vitamin D and minerals

http://www.osteopenia3.com/Osteopeni...Vitamin-D.html
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Old 12-27-2007, 08:37 PM   #2
janet/FL
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OK, Angel
Now I want the answer!! What to take!! And how much!!! LOL
I had a blood test and I was low on vitamin D. Doc prescribed a liquid vitamin D. I am trying to get more sun--but I hate being in the sun! And I live in Florida where it would seem hard not to get vitamin D. I do seem to manage not to, however. Whenever I think of it, I am reminded of you getting your sun in Alaska. You are just going to have to come here and show me how to do it!!!
Hugs for a Happy New year!
Before I close, there is an article in this months Prevention magazine about testosterone and women. It seems they have a patch now for delivery though might not be specifically for women, and it did improve their sex life. It was a short article.
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Janet
Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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Old 12-30-2007, 06:12 PM   #3
AlaskaAngel
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Red face getting what we need

Hi Janet!

Maybe it is the combination of daily exposure + sunshine that makes some difference? I don't know.... My personal example isn't the best (today is quite dark with falling snow here). Ever since diagnosis in 2001/2002 I have forced myself if there is any sun at all to go out in my swimsuit.... even if all I can stand is 10 minutes in the cold! I do take both the vitamin D that is in a multivitamin plus separately vitamin D3 pills, and some magnesium and calcium also in addition to what is in the multivitamin. Weightbearing exercise is what "pulls" the minerals into the bones (and I need to do more of that...)

Thanks for the suggestion on the article in Prevention. Five years ago there was no attention being paid to the problem even though so many women were stuck with it, and I am glad to see that various more serious attempts are being made to address it. Hopefully the best attempt of all will be finding out who benefits from treatment and who doesn't. My friend who died got zero benefit out of treatment and instead was stuck with the problem on top of knowing she would die of bc. I would have given an awful lot to have saved her from even just that loss in the time she had left.

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Old 12-31-2007, 03:42 AM   #4
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Hi Janet and Alaska Angel,
Could you post or mail me the article you mentioned? It is one of my problems and what I try is not helping. I am miserable.
Thanks
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 12-31-2007, 07:32 AM   #5
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Also, make sure you take cholecalicerol (D3) versus ergocalicerol (D2) if supplementing. For most of us, it does not make a difference but for some people (especially as we age or due to genetics), D2 cannot be converted in the liver to the 2nd stage (which is then converted to the active form in the kidney - as Angel's great link describes). The D3 form is the form that our skin makes therefore, this is easiest for the liver to use if you are supplementing instead.

Secondly, one thing this article did not address (and I am sure it wasn't supposed to) is the great benefit exercise has on bone. This includes walking/jogging as well as weight lifting (be careful of your affected arm).
This really helps too and like most things, the synergy is probably greater than just doing one thing or the other.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 15 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 12-31-2007, 01:11 PM   #6
Margerie
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Just some vit D info... I switched to Fosamax D recently. The weekly dose of Fosamax plus 2800 IU cholecalciferol (D3)
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Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 01-02-2008, 12:48 AM   #7
AlaskaAngel
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testosterone

Michka,

In the last year or so there's been more awareness and focus on the need for something to help with genital and sexual aspects of menopause in general, although not necessarily much progress for those who have the problem due to treatment for bc. I hope to read the Prevention magazine article Janet mentioned about the use of the patch now that the holidays are coming to a close, with more free time. From what I know, it still seems to require a reasonable level of estrogen along with the supplemental testosterone and that usually leaves us high and dry.....

I still also personally think that at the very least there should be some willingness and acceptance of the possible use of marijuana to see if it helps at all, instead of such limited understanding for the situation we find ourselves facing.

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Old 01-02-2008, 07:09 AM   #8
michka
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Hi AlaskaAngel!
I managed to read the articles on their site. It is interesting but as you said, it does not help the BCs. The problem is dryness.
As for marijuana, I agree for cases like ours. I started going to a pain center specialized in cancer. I will ask them about it.
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 01-03-2008, 09:57 AM   #9
janet/FL
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Sex and vitamin D--

I had bso-tah--meaning they took ovaries, uterus and since it was cancer--they took 20 lypmh nodes. I had been on supplemental progesterone estradoil--the kind that was thought to prevent cancer from occurring. I then went on an estrogen patch that was not linked with breast cancer. I got that. Before the BC diagnosis I had been on testosterone Gel for a time. Definitely worked wonders on my libido.
After breast cancer--I had no interest in sex. I think my mind had really turned me off to it--and shut me down. I was so used to being scared--I really didn't want my body touched. The reason I say this, is that my mind is now saying!!! what about sex???? I hate to say this, because no one contacted me about Second Life from my post on it, but I think that that has caused a big turn around. In Second Life I am a hot chick about age 32 who has never had cancer, knee surgery or even a cold.
I get to go out and dance and flirt and have fun. And my mind is saying--hey, grab your husband--he is in real life--and go for it!! Now I think Marijuana would do the same thing--(I did try it as a friend had given me a tiny amount and more might have been better) but Second Life is legal. The body is amazing how it can work around certain problems--like dryness. Mine did! If you were never a flirt, or never danced--there are other things in SL you might enjoy. Unfortunately, you do need a pretty good computer and some type of high speed connection. And you can let me know if you are interested as it can be a difficult program to get around in. In real life--I don't flirt. Been married thirty years.

And about vitamin D--the main subject for this thread ;-) My doc, not an oncologist gave me a liquid vitamin D Mycelle D3.
http://www.totaldiscountvitamins.com...ubfolderID=491
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Janet
Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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Old 01-03-2008, 11:59 AM   #10
AlaskaAngel
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Smile Loss of libido

Janet, I don't know where I was, but I must not have understood or missed figuring out what Second Life was. Thanks for suggesting it again.

When a person starts treatment like chemo, they don't realize how drastically different their life is going to be, or realize just how much that long period of dealing with treatment colors their outlook over time. Everybody handles that differently, some more successfully than others. There is a lot of cheerleading support for being brave, but almost no support for finding ways to get back some of the pure joy of being human.

What I think is so poorly understood is that reduced levels of estrogen cause reduced levels of libido, and just like with any other physiologic change, the feelings and thoughts are based on that very real change in how the body is functioning -- not just on the ugliness of cancer or treatment. Those who have never gone through toxic treatment have no real comprehension of the difference. They tend to think of it as just being a depressing experience.

Unfortunately when most people talk about libido they think about it very narrowly, almost exclusively in the sexual context. But libido is the capacity for enjoyment of life.... or, as it is defined in wikipedia:

"Libido in its common usage means sexual desire; however, more technical definitions, such as those found in the work of Carl Jung, are more general, referring to libido as the free creative—or psychic—energy an individual has to put toward personal development or individuation."

The depression that comes with bc is almost always explained away as being due to fear of bc or fear of treatment or self-reproach for the weight that has been gained or the loss of breasts, etc. But a good part of the depression is due to the loss of estrogen. As long as caregivers and patients are blind to that, the only available standard remedies will be to "have faith", "think positive", and/or to "take medications". Those are each important ways of dealing with depression, but IMHO, being as open as possible to alternative ways to learn to "play" again, or to have "the free creative--or psychic--energy" makes a pretty big difference too.

Sadly, those who dole out difficult treatments have been so focused on saving lives that they haven't done the research on libido to find possible ways for us to cope or to get any libido back. Instead they figure that is our problem and mostly wash their hands of it without ever preparing us to deal with it. But more recently in the last 2 years there seems to be more of a professional approach and awareness, and the start of more research about it.

I know there is a trial using pilocarpine to see if that helps with the dryness.

I personally wonder if some of the problem has to do with the loss of our pheromones, and wish someone in research would investigate that.

AlaskaAngel
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Old 01-03-2008, 02:21 PM   #11
Hopeful
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Angel,

To your point about toxicity, I thought this excerpt from Novartis' Femara web site for "Health Care Professionals outside the United States"
was relevant:

"No significant differences were observed on global physical and mental summary scores, suggesting that overall, letrozole did not worsen quality of life relative to placebo. Treatment differences in favor of placebo were observed in patients' assessments with particularly the measures of physical functioning, bodily pain, vitality, sexual and vasomotor items. Although statistically significant, these differences were not considered clinically relevant." (emphasis added)

If you'll pardon my expression, coming from the drug manufacturer, this is a real kick in the pants.

Hopeful
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Old 01-06-2008, 02:13 PM   #12
Christine MH-UK
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Perhaps the focus needs to adjust a bit

Oncologists have, quite rightly, been focussed on survival and I don't think that they really know what to do about all of the long-term treatment related effects. It is only really now, over four years after diagnosis, that I am coming to see that a fair chunk of the difficulties I still have are down to a real sadness about being plunged into menopause about a decade before I should have had it. That and the sense of no longer being able to get back to excellent health, even though the cancer seems to be gone, because the treatments took too much out of me (especially a fair bit of bone mineral density).

Then there is effect of a long period of fear as well. I was reminded of the Bruce Springsteen line 'Can't start a fire, worrying about your little world falling apart.' I felt like that for a long time.

When I was diagnosed their seemed to be more impetus, thanks to Lance Armstrong, behind the idea that the long-term needs of cancer patients needed to be better addressed. That seems to have died down, with even the Lance Armstrong Foundation focusing more on helping more people survive.
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