FEMARA

HapB - of course it doesn't hurt to try. If you're going to try then do the Letrozole, it's the most effective.

So do you take all the good stuff? Like VitD3, calcium, magnesium, K2, melatonin, DIM? What about surgery? Did you have it yet? It's hard to follow everyone's situation.

I hesitate to ask this question because I don't want to scare anyone but has anybody had trouble with their nails? I think I'm going to lose my thumb nail. The skin all around the nail is very tender especially at the end of my thumb. The nail has also turned yellow and is thicker. Don't know if it's the letrozole or the Ibrance that I've been on for 1 1/2 years or both.

The only way I can keep my fingernails is to keep polish on them. It adds a layer of strength to my nails, which are so thin and weak. Weekly manicures would stress my nails so I get SNS manicures every 3 weeks and have to remind the manicurist to be gentle with those drills.

I'm taking Femara for treatment. Not as a preventive. I really don't know how those of you taking it as a preventive stand it! Even though my life depends on it, the side effects are so bad, I can only take it every other day. And even then, I have to take "vacations" of a couple of weeks every now and then. My cancer has been stable for over a year. So, everyone is different, but no one should feel guilty about not taking it. If your cancer returns, you can take an AI then. I'm happy I had 3 years after my initial diagnosis with no Tamoxifen or AI.

Bossomblues...So sorry you are suffering. Just my opinion but I definitely do not think 3 weeks is long enough to see if it was the Femera. I personally would give it a lot longer. Unfortunately some SEs of aromatase inhibitors can be permanent, especially joint issues. Hope that is not the case for you. Good luck and keep us posted.

HapB I think you are right about that. I don't think the doctors want to acknowledge the worst side effects as the AI is sometimes all they have to offer. And if the side affect IS listed it can be dumbdowned as in the case of blurry eyes - means a lot more than we suspect. And it could be the doctors don't warn of side effects for several reasons, one being it is suggestive, and two we would be more likely to say NO. Then what. The Letrozole generic is over $500 a month retail. Some body is getting that money, I'm not sure how it works.

HapB- HI- I also take Zometa infusions. Did they have you get clearance from your dentist? I also advice if you can to take Benedryl before and after treatment and be well hydrated and ask them to run it for a half hour. The first infusion affects some people( not everyone) and the Benedryl and water does help.

I also have ridges on my nails now and I never had chemo. I am thinking it is from estrogen depletion. I remember my grandmother having these ridges, maybe it also hereditary?

I started on Tamoxifen( pre-menopausal) was put into surgical menopause- bucked changing to an AI for a year- finally started on Armidex was on it for 3 months and I ached so badly it ruined my dream trip to Alaska- GRRR- Was taken off a month and started on Letrozole( Femara) my joint pain was so much better but my BP went crazy and my Cholesterol went up. My bones also thinned so 10 months later back on Tamoxifen again. Went for my appointment Sept 1 with my Oncologist my BP was up and I was suffering from anxiety and insomnia. I was put on Effexor and was taken off Tamoxifen until Dec. I am getting a 2nd opinion this Thur and hoping I am put back on something. I have been on these meds for 4 years combined.

They are saying 10 years now?

HapB you can go to interactions at www.drugs.com and put in all your meds and save (if you sign in) and voila - it will show you any alerts, high, med, low. automatically. And I try to not encourage the docs to give me more meds. Death from doctor/hospital error is right up there with the big 7, i.e. a lot of people die from treatments and/or screw ups.

I had a Zometa infusion last week and did some research beforehand about how to mitigate side effects. Here's what I learned: zometa causes a proinflammatory reaction that can feel like you have the flu - achey, fever, headache, nausea, etc. Studies show that taking Tylenol (acetaminophen) before the infusion and for a couple days after will reduce the severity of any side effects. Also, be sure to drink a LOT of water before and after the infusion to flush the excess from your system. It is excreted through your kidneys and can cause damage if your kidneys are impaired, so have your BUN and creatinine levels checked beforehand. Don't take ibuprofen as this can compound any kidney problems. I was expecting the worst, but followed the advice above and had zero side effects. I will be getting another infusion in 6 months and will be a lot less nervous about it next time around!

Edited to remove the word "anti inflammatory"

I was on Ibrance / Femara and had a rough time. Now dealing with an enlarged heart and pulmonary hypertension that could be drug induced or could be from lupus, which I have. EDITED :::: Cardiologist said the scare was due to a false positive - I do not have either. What a he L L of a week, and now I am going to live through that since heart is good. Pulmonologist today, they rushed me in instead of to an ER, very nice to be taken care of... Breathlessness seems to be a combination of so much including Xeloda, due to the week it started being it's worst. We are tweaking everything now, the tx have gotten me thus far and the onc is hopeful and pretty sure I am stable and perhaps very clear of cancer lump node masses or even singular. And yes, Femara is part of my story, it did help.

Perviously posted this - and that is why the links leading to this answer...... I wonder if anyone has heard of personal experiences where either of these caused enlarged heart / cardiomyopathy - cardiomegaly ? Or Faslodex or Arimidex or Xeloda, if you know.

I do know no matter what Femara is not a drug I would revisit. I did better on Arimidex and it was hard too.

For the hair / nails. Biotin supplements. Inexpensive. Doubling up on the recommendations has not hurt me at all.

Bluebird I just recently posted some studies on AI affecting the heart and the lungs and the immune system. I'll see if I can find them. Maybe at AI and Walking Away.

Marijen - I will watch for your link or info here then. Thank you.

Long story short - our family has the gene characteristic MTHFR C6677T. Common enough and sometimes nothing happens to you. You need no folic acid, use methylfolate that absorbs and B12. Easy tweak if you know what and how and how much. But we also are swamped with autoimmune issues - hypothyroid esp. I also have lupus, scleroderma perhaps, hypermobility of joints with toughest bring the left hip where it pops out daily, ouch. And now the pulmonary hypertension which is supposedly causing the enlarged heart, rheumatologist thinks. But tests are needed to be sure and at what degree.

I am looking at what if this was caused by one of the chemo drugs or the hormone targeted drugs. Just in case. I need to know before I continue on anything at all. Have done a lot of research and more each day.

So thanks again.

Estrogen Paradox in Pulmonary Hypertension

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34060...

Ndgrrl, you had thinning bones even though you're taking Zometa? I've been on Zometa for almost two years now. Before I began, the MO ordered a baseline dexa scan which was normal. After being on it for a year, I asked about another dexa scan, but the MO said I should be fine because that's why I'm getting Zometa. She was concerned if the insurance would pay, but relented and ordered one. Again it was normal, and the insurance paid.

HapB, the dentist clearance for Zometa is because of the potential for osteonecrosis of the jaw (ONJ). There is more potential for the ONJ to occur if necessary dental work is performed after one starts Zometa, so it's essential to have any major dental work, e.g. root canals, crowns, tooth extractions, etc., done beforehand. I also hydrate well before, during and after an infusion to help my kidneys. My center also does an automatic fluid flush afterwards, and I insist on the half-hour infusion. To date, I haven't had any problems with SEs.

In the donut hole at $3700, out at $4950. In the donut hole you pay for 40% of brand drugs and 51% for generic. The insurance pays 10% and the rest is discounted. To stay out of the donal hole you have to watch the total costs year to date and cut back on any real expensive drugs if possible.

Before I posted here on the drug price problem, I had already called insurance, Novartis (the maker of Femara) about their patient assistance fund, and had also called various patient assistance programs. None of them could help. Femara used to be included in the Novartis program but it is no longer. For many drugs, assistance is available for one person even with incomes as high as $75k. But not for Femara.

I was already paying a lot for Femara. I am curious about what others are using for a Medicare plan. Perhaps I need to change. Mine is a BC/BS PPO Advantage Plan. I think I paid $293 the last time. But $720!

The limit in my plan on medical expenses is $3500 but the limit for meds is $4000 to get out of the donut hole. I have no idea who I got into the gap but it must be mainly Femara brand name because I don't have that many meds.

Asthma meds are brand name only and I just stopped taking them. Forteo for osteoporosis is brand name and expensive and I don't take it. Reclast was actually on the Novartis Patient Assistance list, if anyone else needs this info.

The MGH pharmacy told me about a manufacturer whose generic is closest to the brand name- Breckinridge. So nice of the pharmacist. I am trying one pill of this generic, tomorrow- just picked up the one pill for 97 cents! If I don't react, I'll get more. If I do react, I will get the brand name again for $720. I may start cutting some in half to save money, too.