FEMARA
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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.
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Kiki / I began Biotin toward the end of chemo at the suggestion of my MO for hair regrowth. I noticed my fingernails got stronger and faster growing fairly quickly. My hair came back in nicely only to later be thwarted by Letrizole. I think I was on Letrozole 9 months or so before the hair shed got bad. I went to a dermo who also recommended Biotin and Jarrosil drops. You can find the drop on Amazon. I take 10 drops in a glass of water every day. I stopped it once for 2 weeks or so and noticed a big hair shed. Went back on immediately.
I’m blessed to have an MO who works with me to combat side effects. It is manageable for me. Sending prayers to all of you who are suffering. May you find some peace and relief.
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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.
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susy...I refused anti hormone therapy from the start for a variety of reasons. Im 3 years NED. I lost 30 pounds and try to exercise daily. This has been shown to lower recurrence rates by 40 percent. Anti hormone therapy in general lowers it by 50 percent. Most people gain weight and have trouble exercising while taking anti hormone therapy. Excess weight increases estrogen levels. So in my book its about even. I also take several supplements. Of course this is a very personal decision and I would never advocate what others do.To answer your question about follow up care, I don't really have any. I see my BS once/year and he does a physical exam of my foobs and axillary area.That is it! Good luck and keep us posted.
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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!
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HapB,
I do not know the exact relationship between high calcium, breast cancer and hyperparathyroid. I do know that calcium is a mineral that is extremely important to our bodies and the parathyroid regulates the amount of calcium in our system.
I have learned from these forums and from the Norman Parathyroid Center - that you MUST get rid of that tumor on your parathyroid. Don't let any doctor tell you you can wait. From what I have read, waiting only causes more problems.
Lots of good information here: www.parathyroid.com
Also, please join the discussion in the group "Parathyroid disease and breast cancer." (sorry, I don't know how to get you the hyperlink to the group, but do search for it and you will get there.)
I am sorry to see that you also had a very difficult time with the AI medications. Extremely rough for so many of us. Stay determined to do what is right for YOU.
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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.
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2FUN....Hi there. I was 62 at diagnosis with 2 grown children and twin infant grandsons. My age definitely contributed to my decision. I'm not sure I could have made the same one with small children at home. These are not easy decisions. Good luck to all.
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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!
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Hi - just thought I would add one tidbit here regarding calcium. I am working with Dr. Neil McKinny, a Naturopathic Oncologist who has written, "Naturopathic Oncology, encyclopedic guide for patients and physicians." (You can order this online) When I was discussing calcium supplements with him he even with Femera he did not recommend it as he stated cancer uses excess calcium that the liver does not process. It just keeps getting recirculating in the blood for cancer to use to form tumours. Tumours are made through calcification. So he said I should be getting enough calcium through my diet but he did recommend vitamin D3 and K2 mk7 as the K2mk7 helps the body absorb the calcium so it does not circulate in the blood.
Hope this maybe some help.
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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
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I'm not sure where to post this. I'm not really even sure what I'm asking - LOL. But what about platelets? My oncologist takes a full blood count at my appointments. It's been a full year since I've gone through radiation. My platelets are low. What does that mean? Is that normal with Femara/breast cancer/lumpectomy/radiation? (I'll look at my chart and post specifically which platelets I'm talking about exactly, etc. tomorrow if I need to, but if anyone knows offhand) Thanks!
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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:-)
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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:-)
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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:-)
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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:-)
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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.
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MO-Beth Here is a really good website that my help for blood level counts. It has a nice chart with normal ranges on it towards the end.
https://www.texasoncology.com/cancer-treatment/che...
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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.
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Materials provided by American Osteopathic Association. Note: Content may be edited for style and length.
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I was tested once and I was on suppleents at the time and I was in range. The second time I asked for the test, my PCP is compliant and again I was on supplements and still in range. I am assuming if I hadn't been on magnesium supplements it would have been low.
What bothers me is my endocrinologist never advised me that I needed magnesium for bone health as he oversees my osteoporosis. Why is that?
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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.
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Hi - The arthritis in my hands really flared up (swelling & shooting pains) on Letrozole. A homeopath recommended CircuVein. After two months of using this supplement, I am symptom free. Best wishes.
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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.
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Has anyone tried Celebrex for pain from AIs?
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Grannyd can you post a pic or link to the circuvein? I want to make sure I get the right thing. Thanks
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I started on Femara post-radiation and was sure it would kill me. The SE's were horrible. My MO switched me to Tamoxifen and added more K2. I still haveSE's but so far they are manageable. I also had Thyroid Cancer previously with damage to my para-thyroids as a result of having my thyroid removed. That created an issue with low calcium. My doctors have me on Calcium replacement, D-3, K2 MK-7 as well as two forms of magnesium. My doctors monitor all the supplements as they are all interactive. As long as they are being absorbed, I don't have muscle spasms, joint pain or other side effects. My GP is willing to monitor my supplements if need be. I still have issues that keep me from being as active as I would like, but I can manage daily life.
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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
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gkbuser I've been asking my MO about it. She hadn't heard about the off-label studies showing joint pain relief, so I emailed them to her to review. I would be interested to try it. My aunt had a large car accident in her youth and has a lot of bone/joint issues her whole life. As she had gotten older, the pain had become really unbearable combined with aging joints. She went on it and said she's felt better than she has in 10 years and doesn't notice side effects. She's a nurse and I know she worked to try many options. So that seems promising.
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I took Celebrex for foot pain many years ago. It caused thunder like cracks in my head. There’s a name for that I can’t think of. I was swithched to Vioxx which did the same thing and it was taken off the market after I stopped it on my own.
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Hi all!,
Marijen, To be a little clearer... In no way did one Dr. get me on the supplement track I am on today. It has been a Journey. The first supplement I took was Calcium. I was put on It after my parathyroids weren't working following my first Thyroid surgery. The first Endocrinologist I saw ran Labs and I was deficient. My muscles even in my toes would spasm and cramp up. That got better with supplementation. I was told to keep Tums with me and to take a couple when my muscles went crazy. That first Endo tested calcium, potassium, sodium, vitamin D-3 and magnesium. He was horrible about educating me though. I'm a person that needs to know the big picture, I'm also a teacher and don't mind doing research. I soon realized I wasn't absorbing the calcium. I did a lot of reading and learned that calcium needed vitamin D3 and K2 MK7 to be absorbed correctly and not end up somewhere we don't want it. My PC Doc has been willing to monitor my magnesium, potassium, B12, D3, and my MO also fine tunes my levels. Losing weight, gaining weight, Thyroid hormone levels and other meds all seem to effect how vitamins and electrolytes are working. For a while my potassium was bottoming out and my blood pressure was rising. It is a continuous never ending circle of adjustment. I take at least two types of magnesium. Magnesium LThreonate and Magnesium Glycinate. I order all in capsule form with the least amount of additives. I use a slo-release form of calcium if I can find it. Some forms of magnesium like magnesium citrate have laxative qualities so I stay away from them. My Dexa Scan before I started Tamoxifen was good and my blood level is around 9, so I guess my calcium is being absorbed and getting to all the right places.
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