FEMARA
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2fun, I am going to try that!
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My oncologist discussed this with me in May (first visit with this Onc). Went off Femara June of 2017 after 4 yrs .. am still dealing with what appears to be serious eye issues..pain..anxiety..and most of the other se’s. Keep up with side effects they are constantly adding them. I am too tired to deal with anymore “new normals”. I want to live as much of a quality life as I can as long as I can and that does not include Femara Arimidex or Tamoxifen..tried them all. Just hope some of this damage and that is what it is will be reversed now that I am off the Femara. As far as it coming back in 20 yrs..I could step in front of a car tomorrow. My plan is continue turning it over to God and enjoy my life.0 -
My side effects went away once I went off of Femara. My joints in my fingers and toes went back into place and the inflammation is gone. They were red and popping out. My hands and toes looked like they belong to a 90 yr old arthritic woman.
Tamoxifen has helped rebuild some of the bone mass loss I incurred while on Femara and anastrozole. After what I have been through, I can tolerate my tamoxifen night sweats.
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Good for you NanaJan! I'm with you!
The SE I experienced were toxic and rather than subside, even when off the AI's, have just morphed into physical damage that I am continually "managing" and attempting to "correct" one way or another.
Turning it over and living life!
Hugs to you!
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ktab, glad that the tam was better for you. Can I ask why they still have you on that since your diagnosis in 2011? I thought it was for 5 years?
2ndgen, so sorry that you had permanent damage to your body, I have bee afraid of that too. I guess we will see.
Nanajan, just to clarify: Your new onc discussed the accupuncture with you? I agree that quality of life is important.
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Brenda, I'm glad the Advil and Tylenol are working for you. I was taking 3 Advil at bedtime and just switched to 1 naproxen. Very little relief. I'm ok during the day, just stiff getting up after sitting, but during the night I still have pain mostly in my thighs and behind the knee. Been off letrozole for 3 weeks.
Nanajan I think you have a good outlook. Can I ask what eye issues you have? I had very dry eyes that resulted in double vision. Since off the letrozole, that has gone away.
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gkbuser - Since I am an intermediate risk for recurrence, it was strongly recommended I be on adjuvant therapy for 10 years. The original plan was to be on Femara for 5 years then switch to Tamoxifen. I did very well on Femara during the first three years and then all of a sudden I started to have severe joint inflammation problems which was very visible to the eye. My Onc then switched me to Anastrozole for the next two years. When I was switched to the Anastrozole the side effects were more tolerable but not gone. I stuck it out for the two years and then was flipped over to tamoxifen. The only real side effect I am experiencing or noticing from the Tamoxifen is night sweats. I am post menopausal so I am only guessing that is why the tamoxifen doesn't affect me the way it does in younger women.
BC.org actually has an article about this. https://www.breastcancer.org/research-news/ai-use-...
My Onc told me switching me to Tamoxifen will help with the bone loss I experienced from taking Femara/Anastrozole. My last dexa scan showed some improvement in area where I became osteopenia.
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thanks ktab, you explain that well.
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so I had my first acupuncture treatment this morning. It took about an hour. But that included time just sitting with the doctor and talking to him about my pain. He is also a family practice doctor 3 days a week. Does acupuncture the other two days a week. It was not painful. 28 needles. Then the needles in my lower back were hooked up to a slight electrical impulse. It sounds horrible but it only felt like someone tickling my lower back with a feather. They let that be on there for 20 minutes then took the needles out. $125 not covered by Insurance of course. And I go back in a week. He said we should know after three treatments if this is going to help. It's not like I walked out of there miraculously cured, but I walked out of there with hope.
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gkbuser - I hope you have good luck with acupuncture - it did help me with neuropathy in my feet. Question - did your Dr put needles behind your ears? I really think the ear treatment I had for DIEP surgery (for nausea) relieved my joint pain from Femara. Been 8 weeks and I have some stiffness but no more pain after that. Worth a shot?
Lanne
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lanne, i dont think so. Something to ask about. Thanks!
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gk, will look forward to hearing how the acupuncture works for you. I want to discuss it with my doctor since, though my pain is lessening, it's not going away.
I'm almost to the end of the bottle of the expensive Solgar Curcumin and I can't say there's been any change while taking it. What seems to help the most is the Mo Maggie cream I use at bedtime. It's at night that the pain is the most bothersome.
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hi everyone! I’m an acupuncturist and would be happy to answer any questions folks may have regarding acupuncture.
It can really help with the side effects of cancer treatments - so much so that I did my fixed rotation shift at a cancer center in my final clinic rounds while in school.
As long as the acupuncturist is versed in oncology, it should definitely help with some aspect of feeing better!
I’m so happy to hear folks are giving it a try :
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LovefromPhilly
Thanks for the offer! Where/how would you treat someone suffering from joint pain and stiffness from AIs?
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LovefromPhilly-
Can you give us a short explaination of how/why acupuncture helps with pain from A/I's. I am wondering if this can help me. The pain is getting bad. I am going to ask my MO about it at my next visit. I don't even know if we have an acupuncture facility near me. How about with our low white counts on our meds ( Ibrance )? The needles are small, but still, they are breaking the skin. Could that be a source of infection? How do you determine who is a reputable acupuncturist, uses sterile technique, and works with cancer patients?
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So, woke up this morning with less pain and a bright attitude! I am guessing it was the acupuncture. 😊 I also have this broader feeling of wellness/positiveness that is difficult to describe. Best I have felt in months! This is very exciting given that he said it would take three to four treatments to really tell if it was going to help. So I'm very hopeful about this. I will keep you guys informed.
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gk, AWESOME! I am so happy for you!
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gkbuser-so glad you’re feeling better. I was going to post the other day about how it sometimes takes a few hours to a few days to see a difference with acupuncture.
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hi everyone!Yes I am very happy to answer questions
I’ll try my best to respond:
1) where the needles go really depends on where the pain is - so let’s say I have pain in my ankles, then local acupuncture to the ankles would be indicated as well as points that are along the meridians (aka channels) that pass through the ankles. I’m including a picture of a drawing of the kidney meridian/channel for a visual. There’s a bit more to it all, but this is a basic explanation.
2) how it works: the Chinese call it moving Qi and blood/circulation and western medicine likes to define the process as that we are affecting the neural network as well as extracellilar matrix is full of proteins and fluids and ions and anions that are all causing a movement of communication across different areas of the body.
3) the needles used are all sterile and used only ONCE. They are individually packaged and wrapped by medical equipment companies. There is no chance of causing an infection. The only precaution I would say is that if you’ve had lymph nodes removed from an armpit region and have lymphedema, that the acupuncturist should not put needles in that arm just in case. Same as having blood pressure taken or blood taken - you want to avoid this if possible.
4) you should always make sure your acupuncturists license is up to date and they have received the proper training. There is State by state licensure as well as a national certification board called the NCCAOM. Just as you wouldn’t go to a doctor that wasn’t medically licensed, do not go to an acupuncturist who is not medically licensed. I did a 5 year medical school training in Chinese medicine and it was enough to allow me to be a primary care provider in the states of Oregon and California. Your practitioner should be well trained, knowledgeable and ethical.
I find an easy way to find acupuncturists near you is to simply type into Google your zip code and the word “acupuncture” and see who comes up. Then you can check out their website and/or call them to ask about their practice and make sure everything is kosher.
Hope this helps!
Brenda
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LovefromPhilly-
Thanks for the explaination. I called my insurance carrier today and asked if my plan covered acupuncture. Of course, it does not. Next I am going to look who is licensed in our region and call to ask about fees.
How often should one get these treatments to be effective with pain issues----bone mets, A/I use??
I will be paying cash and cannot afford too many treatments.
Isn't it ridiculous that insurance covers opoids, but if I want a drug-free alternative it does not cover that. You would think in the age of substance abuse they would cover other methods of pain control.
Any advise out there for pain control, other than drugs and all their side effects---further constipation, doped feeling, etc.
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candy, I couldn't agree more. I have been doing hot Epsom salt baths at night. I feel it really has helped some and helps me sleep a little better too. I think essential oils have been shown to help with some of the side effects of Cancer Treatments too. I sometimes drip lavender oil into the Epsom salt baths. Massage, yoga, I wish Insurance helped us with any of that. I have been youtubing yoga for cancer survivors and just doing yoga on my own to save money. I think if we can get relief in these non-invasive ways that's way better. We live on a tight budget too so I feel your pain. Had a heart-to-heart with my husband about it and he said we'll come up with the money somehow, save money on something else I guess.
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I'm on the same page with you all in terms of insurance and costs. It's a total bummer that many insurance companies do not cover these very effective and helpful services in many states. I have to pay out of pocket too
I would ask your potential practitioner if they have any sliding scale options and/or packages for oncology patients that they offer. Most acupuncturists aren't in it for the money - and you'd be surprised about how many of us provide discounts so this medicine can be accessible to those in need. I definitely do this in my private practice.
What I tell people about how many times to go is the following: we want to get “on top" of the pain cycle which typically takes about 6-8 sessions, at least one a week. Think about it like if you were seeing a physical therapist for an injury or post-op recovery. You would need several appointments to see results. Same thing with acupuncture. Some people see results immediately which is fantastic. Once the issues being treated are under control, then people often move to coming in every two weeks or three weeks. Some people come in once a month for what I like to call “tune ups."
In terms of helping with neutropenia, I have seen acupuncture along with Chinese herbs helps raise WBCs. Don't knock it till you try it. It takes a couple of months for the herbs to start working, so be patient. But it does work!
In Philly, we have an amazing organization called Unite For Her that offers holistic services for free to breast cancer patients. I get free massages and acupuncture, a free CSA share and a free membership to my local gym through this organization. It's AMAZING.
I would look into the different BC organizations and see if they offer any type of financial assistance towards services. I also receive a grant that I use to pay my therapist that I see every two weeks. My oncology financial services team helped me find that money!!! It's out there - you just have to do some asking around. You may want to start with your oncology departments social work/financial services folks and see if they can help find you money for these types of things
Good luck!!! Brenda
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yes and for the pain from the AIs - my protocol at this point is alternating Advil and Tylenol before bed at night (pain is worst at night for me). I sit in the hot tub at my gym at least once a day if time allows. Hot water/baths REALLY help the pain.
I get biweekly massages which feel amazing (good to find a person with oncology massage training and discuss your medical health history with them).
Exercise has HUGELY helped me too. I try to do at least 3 one-hour workouts a week if not more. I try to get out and walk at least 2-4 miles a day if I’m not working out. Movement is my friend
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re help with expenses ... if you struggle with hospital bills or factoring them in to future plans, call your hospital's business office and ask about payment plans, quick pay discounts and any other available programs. I found out that mine had programs to help with deductibles and other out of pocket costs for patients in need. While they can't give financial or insurance advice, they can tell you who in your community can.
See if your hospital has acupuncturists on staff - and what you might be able to negotiate. Also, acupuncture sessions can treat s multiple of problems per session - pain, neuropathy, energy levels, etc. it really is amazing and so many recent studies have shown its effectiveness for ppl recovering from cancer and cancer side effects
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well I pulled a muscle in my back Tuesday morning getting dressed for work. So, in addition to the chronic back pain that was exacerbated by the letrozole I now have acute lower back pain. The good news is I'm going in for round two of the acupuncture on Friday morning. Then after I pick my daughter up from school we need to pack and hit the road for a family wedding in Indiana. I'm kind of worried about how the road trip is going to be with a bad back but we have heated seats so I guess I'll just alternate between the Heat and some ice packs that I can pack and put in a cooler. I also stayed home from work yesterday and saw a quick care. They ordered me some Flexeril. I guess we'll see if that helps. I'm going to try to work today and see how that goes. I hope all you ladies have a great day!
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everyone, anyone...
Just picked up my Femara prescription.... does it make a difference what time of day you take it? Side effects any different???
Thanks! I’m very nervous about starting this
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calee, I always took mine in the morning, but I dont think it matters. Dont be too nervous, you may do just fine. Blessings to you.
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calee, I take mine in the morning, not for any particular reason except that's when I was used to taking my daily vitamins and supplements, and Ibrance, nowadays.
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I have been doing yoga and it has made a big difference in my pain and stiffness. There are lots of YouTube videos that can get you started.Be careful with the use of essential oils. Oil and water doesn't mix, so putting it in bath water can be dangerous unless you emulsify it first. This is a great article explaining it. https://wholenewmom.com/health-concerns/essential-...
Wow Brenda that organization sounds amazing. If there was something like that in my area, I sure would take advantage.
Gkbuser I hope your back is better and your trip wasn't painful.
It's 6 weeks today since I stopped the Femara. I can say that my pain is pretty much gone. Still bothers me a bit at night, but I continue the naproxen and magnesium lotion before bed. I was supposed to get a call back from the MO nurse about starting tamoxifen, but didn't. I feel so much better, I hate to start the cycle again.
Hope everyone has a great weekend!
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so I'm happy to report that I had my second acupuncture last Friday. Pain in my right shoulder is gone, back pain is down to about a three. Started out as a 7. My foot pain is also significantly better probably down to around a 2 and it was up to an eight at one point. So far I'm very encouraged with the acupuncture.
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