FEMARA

This is why I would rather take my chances and not take this drug. I had a very active life before all of this and I miss it. I don't think I am cut out to sit on the couch and watch TV.

suzy, did you have any of the genomic testing that gives you your estimated risk of recurrence with hormonal therapy.. Do you have a strong family history of breast cancer and how old are you if that isnt to forward to ask? I assume the agressiveness of follow up will look at some of that.

Julia, 

Do not think you are alone if you choose to go off the AI's. I, too, thought I was going to die and said "enough!" The people who have no to few side effects often don't understand just how debilitating the AI's can be to some of us.

I tried both anastrozole and femara - couldn't tolerate either one and felt like I was crippled. Although some of the side effects went away over time, others have permanently damaged my joints and I still suffer from various problems even after quitting them last year. (several hand surgeries due to carpal tunnel, trigger finger, venous reflux in my legs, swelling, back pain, tarsal tunnel, etc. I also have high calcium now and I suspect I have a tumor on my parathyroid that has to be removed. Non-cancerous, but harmful to my body for a number of reasons. I'm learning now that there is a connection between breast cancer and parathyroid tumors.)

Follow your instincts - and look at data. Each one of us has a different diagnosis and a different journey - I've learned that we each have to advocate for ourselves because doctors follow a protocol not mindful of our individuality and they don't have any way of testing how specific drugs will affect each person. You're in a good place by searching for information on these forums, the members of these groups are who I know I can turn to when beginning my research on questions or issues. I am grateful for everyone's experiences, willingness to share and resources offered. 

I empathize with the angst of quitting the AI's - all the questions, all the fear, all the medical "expert" pressure - the only "right" thing is what you choose. I came to the conclusion that the AI's were going to kill me faster than the chance of getting cancer again. If it comes back, I will deal with it knowing every decision I have made has been the best decision I could make at the time. 

I wish you strength and courage. 

dtad, do you mind me asking how old you were at dx. I really struggle with all of these decisions.

I not only had BC, but endometrial cancer dx the week after my first lumpectomy. Then they found a growth on my thyroid (benign). My endocrinologist says they are all related, we just don't have tests yet to identify the connection.

I find I get so tired that I am exercising every other day! Thanks for the support ladies!

HapB, 

Not yet - I just got my first high calcium reports last week... spent the last week immersed in research and info collecting. I got blood drawn for calcium, PTH, Vitamin D and a general panel today. I am filling out paperwork for the Norman Center tonight. As I've said on the other forum, I don't want to believe this is happening (one more thing?) - that old denial thing - but thankfully these tumors are not typically cancerous and given everything I've been through with this breast cancer journey, I can't ignore this and must keep moving forward and get it taken care of ASAP. I'm still in the middle of dealing with other issues (lymphedema and veins in legs, hands, back) but I'm hopeful removing this tumor will help ease all that a bit, too. 

I had my thyroid (not parathyroid) removed when I had my TE exchange. I had part of my thyroid removed 15 years ago. Relatively seeking it's an easy surgery, but it is another surgery. I had 4 surgeries in 8 months, and surgery is a lot of stress on the system. Good luck!

roaming star, would you share your dosages of D3 and K2? So he believes this is good protection from osteoporosis? Did he mention magnesium? Thanks

gkbuser - regarding the amounts of D3 I think that it depends on a couple of factors. 1) where you live - in Canada most of us are deficient in vitamin d. 2) Your heritage - if you have darker skin you need more vitamin D because your skin reflects not absorb this from the sun. My heritage is part Cree so based on this I was taking 4,000 mg (2,000 morning - 2,000 night). But now that I am going to be on Femera I am going to up this to 1,000 in the afternoon. As for vitamin K2 mk7 originally he (Dr. Mc Kinney)said 100 mg in the morning and 100 at night but that was when they were going to put me on Tamoxifen. Now they are going to put me on Femera so he increased the K2 mk7 to 100 mg in the afternoon as well.

MO-Beth - re platelets - if you google blood lab results for chemo for breast cancer for there are some really good websites that explain what each count is testing, the normal range, and what low counts can mean. I printed off a sheet from one of the sites and kept it so that when I got my lab results back I could easily check how my levels were. Off the top of my head - i couldn't tell you:-)

gkbuser - regarding the amounts of D3 I think that it depends on a couple of factors. 1) where you live - in Canada most of us are deficient in vitamin d. 2) Your heritage - if you have darker skin you need more vitamin D because your skin reflects not absorb this from the sun. My heritage is part Cree so based on this I was taking 4,000 mg (2,000 morning - 2,000 night). But now that I am going to be on Femera I am going to up this to 1,000 in the afternoon. As for vitamin K2 mk7 originally he (Dr. Mc Kinney)said 100 mg in the morning and 100 at night but that was when they were going to put me on Tamoxifen. Now they are going to put me on Femera so he increased the K2 mk7 to 100 mg in the afternoon as well.

MO-Beth - re platelets - if you google blood lab results for chemo for breast cancer for there are some really good websites that explain what each count is testing, the normal range, and what low counts can mean. I printed off a sheet from one of the sites and kept it so that when I got my lab results back I could easily check how my levels were. Off the top of my head - i couldn't tell you:-)

Hi, Roaming Star, thanks! Well, I did that when I first got the results and it said nothing about breast cancer or radiation or Femara and the only thing I can find on breastcancer.org about platelets is people waiting for them to go up so that they can take chemo treatments. Hm. The team of docs keep saying I'm just fine. The oncologist hasn't said one word about it at all. She only mentions the bone density issue. I'll ask her about it next time and bring the answer back here in case anybody else is wondering. That will be in April.

FULL STORY

There is a caveat to the push for increased Vitamin Don't forget magnesium.

A review published in The Journal of the American Osteopathic Association found Vitamin D can't be metabolized without sufficient magnesium levels, meaning Vitamin D remains stored and inactive for as many as 50 percent of Americans.

"People are taking Vitamin D supplements but don't realize how it gets metabolized. Without magnesium, Vitamin D is not really useful or safe," says study co-author Mohammed S. Razzaque, MBBS, PhD, a professor of pathology at Lake Erie College of Osteopathic Medicine.

Razzaque explains that consumption of Vitamin D supplements can increase a person's calcium and phosphate levels even if they remain Vitamin D deficient. The problem is people may suffer from vascular calcification if their magnesium levels aren't high enough to prevent the complication.

Patients with optimum magnesium levels require less Vitamin D supplementation to achieve sufficient Vitamin D levels. Magnesium also reduces osteoporosis, helping to mitigate the risk of bone fracture that can be attributed to low levels of Vitamin D, Razzaque noted.

Deficiency in either of these nutrients is reported to be associated with various disorders, including skeletal deformities, cardiovascular diseases, and metabolic syndrome.

While the recommended daily allowance for magnesium is 420 mg for males and 320 mg for females, the standard diet in the United States contains only about 50 percent of that amount. As much as half of the total population is estimated to be consuming a magnesium-deficient diet.

Researchers say the magnesium consumption from natural foods has decreased in the past few decades, owing to industrialized agriculture and changes in dietary habits. Magnesium status is low in populations who consume processed foods that are high in refined grains, fat, phosphate, and sugar.

"By consuming an optimal amount of magnesium, one may be able to lower the risks of Vitamin D deficiency, and reduce the dependency on Vitamin D supplements," says Razzaque.

Magnesium is the fourth most abundant mineral in the human body after calcium, potassium, and sodium. Foods high in magnesium include almonds, bananas, beans, broccoli, brown rice, cashews, egg yolk, fish oil, flaxseed, green vegetables, milk, mushrooms, other nuts, oatmeal, pumpkin seeds, sesame seeds, soybeans, sunflower seeds, sweet corn, tofu, and whole grains.

Story Source:

Materials provided by American Osteopathic Association. Note: Content may be edited for style and length.

HapB

I have been tested for Magnesium every time, but during chemo for some reason they didn’t test Vitamin D. I was deficient going into chemo and deficient coming out but it corrected by the time I had my blood work post radiation.

Shelly, thanks for info on Biotin and Jarrosil. It's good to know what works for keeping our hair healthy.

I've gotten through my first month of letrozole with some of the common, pesky SEs (hot flashes, foggy brain, minor body aches), but nothing unbearable. I sure hope it stays that way. Good luck to all.

Grannyd can you post a pic or link to the circuvein? I want to make sure I get the right thing. Thanks

Wow threeC , I haven't heard of a doctor knowing to give the four supplements together. That's good news. I'm on calcium for osteoporosis, would you mind telling us what kind of calcium and the two forms of magnesium? Thank you.

Edited due to autocorrect