FEMARA
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Jean ((hugs)))
Remade, I hope for many more good years for you with your beautiful grandchildren
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Is there a way to tell if joint/muscle pain is from the femara, or from pre-existing things like arthritis? I am working really hard with an alignment specialist, but it is hard to tell if I am making progress with biomechanical issues when the pain I have may or may not be from poor alignment vs femara? SO frustrating when one day I am doing well with more walking etc. and the next I am limping and gritting my teeth!! Started on femara in May. Maybe if I am patient any AI related pain would diminish? I never take NSAIDS but maybe I am gonna have to give in for a while....
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I had my pet scan today to rule out spread of cancer as the cause of my severe pain in hips, back and left knee. Also muscle pain and cramps. I was actually offered a wheel chair several times today. I will get the results either tomorrow or hopefully Monday, then the next step will be decided. I am also off femara for this week at my chemo doc's insistance. I'll try to update you as soon as I get any news. Love, Jean
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Jean I hope for very good results from your PET scan.
Because of severe SE's, I'm off of Femara for now. Appointment with MO is in 2 weeks and we'll decide what to do then. Femara is the second AI that I've tried, Anastrazole was the first one and it gave me similar severe SE's. I'm thinking that MO will want me to go back on Tamoxifen. I'll suggest lessening the dosage of Femara, but if I'm dealing with anything like the SE's that I've experienced I definitely won't continue with an AI.
For me, joint pain came on gradually when I started Tamoxifen four years ago, and has continued when the switch was made to an AI six months ago. I don't think that I have arthritis, pretty sure that it's the medication that brings on joint pain. I'm active, go to the gym a few times a week, run and ballroom dance and the pain is pretty much non-existent with activity. If it got to the point where I couldn't do these things anymore, I'd have a big decision to make.
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I was having some joint issues especially in my jaw and some teeth pain. Took a week off of the Ibrance but kept going on Femara. Now day 3 of 2nd cycle of ibrance and I feel absolutely fine........
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Jean, positive thoughts to you....
Re Femara and arthritis, I wonder if Femara targets our weaknesses, like a joint with arthritis. I had arthritis prior to starting Femara but it got so much worse along with pain in unaffected joints. Exercise has made it bette
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Well , thanks be to God, my pet scan came back negative. Woohoo! Now to see what can be done for the pain. I was off femara for 2 weeks in August with no change. Maybe my chemo doc will be willing to switch me to another drug. Love, Jean
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Jean That is the best news ever, woohooo!
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Jean, great news!!
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yay jean!
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Thanks, ladies. Still praying for a way to treat the severe pain when I try to walk. Love, Jean
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Great news Jean
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Jean I'm new to this forum, maybe you've posted something here before about this. Have you tried other AI's? What is your MO saying? I hope for better days for you very soon.
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Any suggestions, re the joint/muscle pain, for natural/nutritional changes that have worked for anyone? I am already on an anti-inflamm diet, lots or turmeric, things like that, but wondering if I need to ramp it up a notch. I think I am going to have to start on Prolio soon and I see that this is a side effect of that product too...I am gonna go nuts if I cannot get some regular sleep!
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cbaird I haven't taken supplements for joint pain, but I do take a magnesium supplement at bedtime for sleep and it works well. I'd check with your MO about supplements, mine always asks about anything that I take, multi-vits, etc.
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Hi, I'm back again. Had my appt. with my oncologist and things are looking O.K. It will be a year on Oct. 23/15 since my mastectomy. I asked her about taking magnesium for the pain but she wasn't too excited about that. Told me to take Tylenol instead, but it doesn't work. The joints in my knees, hips, shoulders, and particularly in my hands is quite severe, but I'm very, very thankful no more cancer is showing up. Both my family physician and the oncologist recommended sleeping pills (Zopiclone) for the insomnia. I see my oncologist again in four months. It's too bad we have to be made miserable with the side effects of Letrosol, but if it will keep us alive it's worth it. The pain side effects didn't start until I'd been taking it for about 4 or 5 months. Oh well, it's a good excuse to take it easy and enjoy the beautiful fall weather and save the house-work for winter. Best wishes, and hugs to you all.
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Maggieb. It will be a year for me as well on oct 23. What does your follow up include with you mo? So far my follow ups have only included blood work. No tumor markersNo scans. Little nervous about my follow ups and whether they should be doing more. Just had my ovary and fallopian tubes out last week to do an ovarian cyst. Told Doctor get them out. Also found out I'm on the beginnings of osteoporosis which I started on actonel . Causing diarrhea as I'm trying to heal from ovaries being removed .
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Hi Thinking Positive - So far my follow up with the MO consists of her inquiring about any problems I might be having, and examining the site of the mastectomy for any bad signs - that's it. I go back to see her in Jan./16 and I think she intends to discharge me to the care of my family physician at that time. I don't know how I feel about that. It's over a 5 hr. round trip drive to the city to see the specialists for a 15 or 20 min. visit, and we had some nasty trips last winter in snow storms and cold weather (good old Saskatchewan!). I guess I should have faith in my family doc. catching any signs of trouble as well as be my own doctor. I've found out the more information you accumulate, the more books you read, the better prepared you are to deal with all that happens. There have been no blood tests ordered for me since surgery and I had to have blood transfusions because of a hematoma and second surgery. I'm going to request my family doctor for a thorough blood test and checkup in the near future. I have to get another mammo and ultrasound on my "good" breast in Feb/16. You sound like you're having a real rough time of things and I'm sorry that has to happen. Always thinking of my "breast friends" out there. Love.
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Did any of you have increased cholesterol after you started femara? I just got my latest lab results and my cholesterol is high (I've always had very low cholesterol . . . I haven't changed my diet since previous labs but haven't been exercising quite as much). It surprised me. If you had high levels did your doctor put you on even more drugs to bring the cholesterol down?
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Knitting, it's funny isn't it....the drugs we take means we have to have more drugs?! No wonder people talk about conspiracies!
Maguey, regular blood tests are a good idea. I keep putting mine off...I'm such a bad girl
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I've been switched to aromasin to see if it will help with the pain and stiffness which seems to be worsening. So far no change after 1 week. I have an appointment with the rehab doctor at Sloan Kettering this afternoon . Hopefully he can give me some relief. Love, Jean
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I have not had my cholesterol checked yet,...I can only imagine if the fermara threw me into osterporosis range within 6 months...my cholesterol must be high. Need to have them check that next time. Now taking Actonel...for the osteoporosis...which gave me a weeks of the runs...and pain on the area where they said I had osteoporosis. Needless to say I am freaking out about the spine pain...well not really pain. just a feeling that I have there... and it started the day that I started the actonel... or the day after, so I see the specialist on the 20th to discuss. She also took some blood work.. Anyone on Actonel for osteoporosis??
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Thinkingpositive, how did you know you hit osteoporosis levels at 6 months? They did a baseline dexascan for me but told me they would only re-do the scans every two years. Crazy stuff that is happening to all of us isn't it?!
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knittingPt.....my MO sent me for bone density. They compared it to the one that I had two years ago. Everything stayed the same except the spine. It was -2.5. The beginning of osteoporosis. They told me I needed to see osteoporosis specialist to follow up. I had osteopenia for years but took vitamin D3and calcium. I guess that level could have been like that prior to all of this and I didn't know. But the dr thinks the Fermara helped it into the osteoporosis level. Just took my first monthly actonel a few weeks ago and immediately had the runs for a week and also soreness in the spine area that had the osteoporosis. I went for blood work for vitamin levels and thyroid and meet with the specislist again in two weeks.
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thanks! It sounds like two years between tests is the norm!
Has anyone had increased cholesterol levels? I know it is a side effect but I eat great and exercise. I don't want to have to keep taking a drug for this and a drug for that my whole life. Geez. I'm only 39. I shouldn't even be thinking about half this stuff. Grrrrrrff
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I had increased cholesterol and I went on meds for a week. The side effect was joint pain and it made my pain worse. With the support of my cardiologist I stopped. I'm still in pain from Femar, but I have found that swimming helps. If I swim at least 4 days a week, the pain is manageable. I am also on NSAIDS Etodolac.
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I was only on Femara 4 days and jumped back to my Arimidex. The Arimidex elevated my Cholesterol from 198 to 226. which was why we tried to do the Femara. I don't know of anyone who didn't have a strong preference for one of the AIi's over another, although I do know people who struggle with all of them.
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I've been on Femara since May (I think). I had been on Arimidex before that but it made my feet itch like crazy, totally unbearable. I'm okay on the Femara. I'm achy, especially after sitting for a long time. Exercise helps, so does magnesium.
I'll take the SEs over the recurrence worry.
Jen
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Knittingpt...my cholesterol is always 140 to 150. I had it checked after 6 weeks of femara and it is 201. Lack of estrogen causes cholesterol levels to rise. I have been exercising and eating a low fat diet...Mediterranean Diet to be exact. No red meet egg whites and olive oil for my cooking. Hope this helps
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side effects took about 4 to 6 weeks for me
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