Letrozole/Femara and supplements

sueinfl · August 2014

I'm overwhelmed with trying to read through 5 years of posts under the Femara thread. I am looking for what you have used to help with the hot flashes, fatigue, insomnia and, mostly, the pain. I have been on letrozole since Feb. '14 and the symptoms are just starting to hit big time.

The pains in my joints and bones are probably the worst with which to deal. I am taking 400 mg ibuprofen and melatonin at bedtime to help me get to sleep, but worry about the threat of the ibuprofen to my intestinal track over the long haul. Other than that, I am taking fish oil, curcumin, Sam-e and trying to keep my diet as anti-inflammatory as possible. Exercise helps immensely, but haven't been able to figure out how to live and work on the treadmill all day. :-)

Have the side effects subsided over time for anyone? At what point do I stop trying to be the perfect patient and ask for a different AI? I have heard that the worse the SE's, the better the result. Propaganda or not?

Thanks for any and all advice.

Sue

Kicks · August 2014

I've been on Femara/letrozole since Feb 2010 and have had no issues with it. No 'hot flashes' ( never had any when I went through natural menopause at 44 either), no fatigue, insominia or pain relater to it. 1/2 way through my 12 weekly Taxol, I developed low potassium (K) levels and still have issues with that at times even though I take it daily. I do occasionally still get pain/cramps from K being low at night but taking another K pill will have it gone within about 20 min. - I do this with approval of my Dr. The other 'suppliments' I take are Vit D, Calcium, and a 'Super B Complex'. I just added sublingual B12 two weeks ago after seeing my PA for my 6 mtu check up as my B12 was low but other B's were fine. Talk tp your Dr.

I have never seen any documentation that any med has to cause SEs to be working. In my case, it seems that Femara/letrozole has been working for me without SEs. It's been 5 yrs since IBC DX and I'm still 'here' and NED.

cfdr · August 2014

I have found two things to be helpful for joint pain: tai chi, and tart cherries. A friend with arthritis recommended tart cherry juice; I don't like to drink fruit juice because of the high sugar content, so I order unsweetened tart cherries by the pound from a place in Wisconsin...eat a handful on my cereal in the morning and another by itself after dinner.

SpecialK · August 2014

I changed the way I eat and it has made a marked difference in the amount of joint pain I was experiencing. I eliminated eggs, dairy, sugar, corn, soy, gluten, and peanuts. I no longer have joint pain, GI upset, and lost the 20 lbs. gained with chemo and hormonal therapy. I had been taking in 1200 calories of sensible food and walking a fast 5 miles a day and couldn't budge the scale - this worked. I take my meds at night - I occasionally have insomnia, but I did before also. For the most part, I am not having sleep issues, hot flashes have remained consistent since my hyst/ooph 12 years ago - not better or worse. Before you switch meds you might consider using another manufacturer of the same drug - I had a lot of problems with the first generic letrozole I took, so after six months I switched to arimidex, after a year had some negative side effects so switched back to a different generic letrozole - it was much better. We can be sensitive to the fillers and dyes used in each generic.

savgigi · August 2014

I walk a lot and find that I have no joint pain when walking but I do have joint and muscle pain after sitting for a while or getting out of bed. Exercise definitely helps. I also discovered that the combination of my statin and Femara, when taking the pills at the same time, caused quite a bit of muscle pain that would wake me at night. I changed the dosing schedule and now take 1 in the morning and the other at night and I am much improved.

mirryp · August 2014

For the hot flashes I use a frog toggs chilly sport towel found at walmart by the yoga section for 10 dollars each. I have two and keep them beside the bed and when a hot flash hits one on my forehead/neck and one across my stomach (sleep only in sport bra) reduces the terrible feeling of the flash. I carry one with me all day as well and use as necessary. Not sure how they work but they stay cool as long as damp, warm up a bit as applied, but then cool back off once removed. Now into my 4th year of treatment and wish I had discovered them much earlier. My onc also prescribed low dose Effexor.

For the muscle and joint aches I found staying active helps so much. I am stiff if I sit more than an hour or two but once up and moving the pains diminish. I walk/run or bike slowly every day and no longer notice the total stiffness after a night in bed.

sueinfl · August 2014

Thanks for all the help and advice. I have eliminated a lot from my diet, but probably need to be squeaky clean in order to get this under control. The most positive aspect is that exercise and moving helps compared to the types of arthritis that are worsened by exercise. Now if I can just eliminate any other dietary triggers.

Amazing how healthy I felt up until my diagnosis and treatment...

dventi · September 2014

Im so impressed with everyones approach to resolve your side effects.!! I follow a similar plan as you! Exercise is key - wish I could do more but work gets in the way. Yoga once a week and water aerobics (which is excellent for joint pain!!) 2 times a week.

Have added seeing an acupuncturist into the mix and have found this has helped me with side effects. Also added juicing as a snack instead of a bag of potatoe chips (ohhhh so hard to eliminate!!).

Hugs to all!!

Delufox · September 2014

I have been on letrozole for 4 months with no significant side effects. However, was just diagnosed with erathema nosodum-swelling lumps on the shin. Very painful and wondering if anyone has experienced this?

Cdvee · September 2014

I've been on letrozole for 9 months. I just had my blood work done and it showed Hemoglobin A1C at 6.8 and Glucose of 7.2 (after fasting). So now I have elevated blood sugars? Has anyone else experienced this?

sueinfl · September 2014

Oh, ow, Delufox. I hope the problem has resolved itself by now. I haven't had anything like that, yet.

Cdvee, my blood work is fine as far as blood glucose so far, but I have seen reports of it being elevated by letrozole use. Makes sense since estrogen helps metabolism of blood glucose. Let's face it. We are on a form of chemotherapy that has effects on our bodies above and beyond control of the cancer just like any other.

The major glitches in my blood work since cancer treatment have been slightly elevated MCV since chemo in 09 with normal hemoglobin (B12 is fine) and now my WBC count has been creeping downward. That is the one that has me worried. That and my med onc saying I'm fine, no sign of cancer. Every time a doctor has confidently told me that, cancer has reared it's ugly head.

Has anyone experienced lower WBC's on letrozole or anything else for that matter and had them return to normal? Should I keep my eyes open for new complications such as bone mets? It would be really tough to tell the difference between bone pain and joint pain at this point.

Letrozole/Femara and supplements

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