Exemestane and Joint/Muscle/Tendon Pain
I know this subject has probably been done over and over but I am interested in finding out if anyone has had success with controlling severe pain caused by aromatase inhibitors. I have had endometrial cancer and breast cancer. Both primary cancers. Both hormonally driven. As a result I need to stay on HIs possibly for the rest of my life. I'm 54. This journey started when I was 49. I did 14 months on Letrozole and 11 of them were pure hell. The pain I felt was unrelenting. It started in my hands but quickly moved to hips, knees, ankles, feet. Standing was horrible. Walking any distance impossible. I tried: Exercise - aqua aerobics and swimming Tumeric Duloxitine Magnesium Ibuprofen Celebrex My oncologist changed me to Exemestane and I have been on that since February this year after a 4 week break. It is much better but I still have pain when I stand and walk and have developed issues with my Achilles tendon which is very painful. I have dropped the Duloxitine and Tumeric (the pain didn't get worse because of this), still take 100mg of Celebrex morning and night. Use Voltaren emugel and Magnesium (soluble) at night. I take Vitamin D. I have been going to a specialised gym that works with cancer patients and that has also helped but currently I am not going because of the Achilles problem. I have seen a rheumatologist, a physiotherapist, exercise physiologist. I really would like to find a pain medication that actually takes the pain away when I walk so I could walk and get back to the gym a some semblance of normality. I have recently also stopped working, partly because of these issues. So, any suggestions/ideas I can talk through with y medical team.
Letrozole side effects
Last monday at the age of 52 i started my daily dose of Letrozole. Fast forward 7 days and i feel like ive aged 30 years. Every bone & joint hurts, even bones in my face hurt ! My Oncologist said she was concerned i may not do well on letrozole given my pain in recent months (none of which i had before BC). Should I stop? Will it get better or worse. Cant sit on the loo without screeching from pain in my knees. I want my old self back and i want it now 😡
Feeling anxious about Letrazole and Radiation
I have been blessed with a very good GP, after a clear mammogram my GP referred me for an ultrasound due to a strong family history of cancer. At that ultrasound I was found to have a small tumour. I have recently had a wide local excision and sentinel node biopsy and yesterday I found out my margins were clear, stage 2 size 10mm very happy with that! That was the easy part I am now going for radiation treatment and then they want me to start Letrazole. I am so worried about the side effects of this drug. I am a nurse and have decided to take time away from my busy job while I have radiation. I already suffer with a severe form of erosive osteoporosis arthritis in both my hands which is extremely painful and also had to stop HRT recently which has resulted in sleepless nights and soaking wet sweats. I'm so worried this is going to make things a lot worse. I live alone and so far I have coped so well with my diagnosis but today feeling very tearful and worried about how I may cope in the future with working and being alone. does anyone have any great advice or coping skills. Thank you
Letrozole - Is there a light in the darkness?
I'm very, very cautiously expressing hope that things may get better on Letrozole. Some of you may know that I have been one of the unlucky ones to have very severe side effects from the AI. Joint pain, soft tissue pain and injuries have been hugely debilitating for almost the entire time I have been on it (ticked over 2 years at the beginning of August). Well, I hesitantly say this... I got home from work on Thursday, got out of the car and thought, "that's weird - almost no pain". Now this is the time of day that I am usually struggling really badly and hobbling into the house as quickly (joke) as I can to medicate. No need to hurry. I am still feeling that way. And it can't be due to warm weather because it has been freezing here. I am not abandoning the medication that has taken the edge off the pain enough to make it manageable, but I am hoping that I have turned a corner. I have to admit that I'm also in slight state of disbelief and a bit suspicious that things could change so radically. My oncologist said a couple of appointments ago that often after about 12-18 months pain settles down but I think we were both disappointed and resigned that this wasn't happening for me. Given I am on this for at least 8 more years that's no minor obstacle. I realise that it might get bad again but I can now hope that it will also get better and maybe this will also give others hope for the same.
Topical Cream use on sore hands/thumbs from Letrozole/Tamoxifen/Exemestane
Hi guys As with many of you - i've had extremely sore hands (and thumbs in particular) since starting Letrozole and then changing to Exemestane 6 months ago. Initially, the pain was manageable - but just now, I can't even use tongs to put food onto a plate! It is quite debilitating. It is now 24/7 pain and become worse in the last 2 weeks. I am aware of whenever I awake during the night - it is a continual pain/ache/numbness ..... and worst of all, it is now affecting my ukulele playing & even my fishing! :( My fingers feel like fat sausages (swollen) and now don't bend well and are not good at holding things - I can't form a fist anymore! :( SO ..... when in NZ a few years back, I grabbed some Sports Liniment Cream developed by one of NZ's best Sport's Injury Specialist, caller Percutane! It is available in Aussie at Amcal Chemists, I believe. It is similar to Voltaren. I put some over my whole hands/fingers this morning and am already feeling the results - I've rubbed my nose & my lips & they are burning like hell!! So if it gets thru my skin & attacks the pain areas like it has there already ..... I am hoping it will work wonders!! Some info on it below (I don't have any affiliation with the product - but have used it previously for shoulder pain & it worked.) I'll just have to be careful when I go to the loo!! What do you use for the relief of hand pain (in particular)? Does it work for you?? How Does Percutane Pain Relief Cream Work? Percutane Pain Relief Cream contains four key ingredients that together help soothe pain and discomfort in muscles and joints Capsaicin (Capsicum fruit oleoresin) is a substance derived from the seeds and membranes of certain plants that belong to the nightshade family, such as chillies and capsicum.11,12 It is used, among other things, to help relieve muscle and arthritic pain.11 It is believed that capsaicin reduces pain by temporarily reducing levels of the neurotransmitter, substance P, which relays pain signals to the brain.12-14 Neurotransmitters are chemicals that help communicate information between nerve cells. There are numerous clinical trials that have been performed that show Capsaicin is very effective at providing pain relief. Arnica: Arnica (Arnica montana) is a herb that has been used for medicinal purposes since the 1500s. The fresh or dried flower heads are used in creams to soothe muscle aches, reduce inflammation, and heal wounds.1 The anti-inflammatory effects of arnica are thought to be due to one of the compounds it contains.2 In a clinical study, arnica was shown to improve pain, stiffness, and function in people with osteoarthritis of the knee.3 Another study showed that arnica was as effective as ibuprofen in reducing pain and increasing function in patients with osteoarthritis of the hand.4 Burdock: Burdock (Arctium lappa) is a member of the daisy family and has been used for centuries to treat a range of ailments.8 The seeds of the plant contain compounds that have anti-inflammatory effects.9 Burdock is also believed to be useful in treating a number of conditions including arthritis and skin problems.10 Aloe vera: The aloe vera plant has been used for thousands of years to treat a number of conditions.5 These include wound healing and inflammation.6 Aloe gel contains substances known as glycoproteins and polysaccharides. Glycoproteins speed the healing process by stopping pain and inflammation, while polysaccharides stimulate skin growth and repair.5 The SCIENCE behind Percutane: How do these ingredients help Arthritis Sufferers? Substance P is involved in the development of and inflammation associated with arthritis.14 Studies have shown that topical capsaicin is effective in reducing pain in osteoarthritis and rheumatoid arthritis sufferers. In one study, capsaicin substantially reduced tenderness and pain in people with painful osteoarthritis of the hand.15 In another study, after 4 weeks of application, capsaicin reduced pain in people with osteoarthritis of the knee by 57% and in people with rheumatoid arthritis by 33%.14 How do these ingredients help neuralgia and Post Herpetic Neuralgia (PHN) sufferers? Percutane gives relief of nerve pain/mild neuralgia and the pain of shingles rash and PHN by topical application (to be used only on unbroken skin). It provides temporary relief of nerve pain/ mild neuralgia by inhibiting Substance P, which transmits pain signals to the brain. Substance P is thought to contribute to certain types of skin pain. Because this pain is similar to that associated with PHN, researchers have investigated whether capsaicin is effective in treating PHN.13 One study looked at people who had had PHN pain for 6 months or longer and found that after 6 weeks of application of topical capsaicin, pain and the ability to function were significantly improved. In addition, the improvements continued in 86% of people who kept applying capsaicin for up to 2 years.12 In another study, significantly more people with PHN treated with capsaicin experienced relief from pain compared with those who used a placebo cream. After 6 weeks, almost 80% of people experienced some relief from their pain.13 How do these ingredients help Fibromyalgia sufferers? Fibromyalgia is a condition associated with chronic musculoskeletal pain. The majority of people affected are young women in their 20s’ or 30s’. It’s not known what causes the pain, but one theory suggests that substance P may be involved.16 In one study, people with fibromyalgia who applied capsaicin for 4 weeks on tender points reported less tenderness than those who applied a placebo cream. After 2 weeks, people who applied capsaicin to their hands had a significant improvement in grip strength.16The use of Medicinal Cannabis Oil in Cancer Treatment - WEBINAR next Tues (Aus Time)
The use of Medicinal Cannabis Oil (MCO) in the treatment of Cancer is a much debated topic - yet it is still not readily available to Australians, even tho many countries in the world allow it's use for both quality of life in those with cancer, pain relief & some claim to be NED after using MCO ... many who've used it also rely on it for both stimulation of appetite, pain control and the ability to live your life with some degree of dignity and enjoyment. There are many different strengths in MCO - to deal with mild or chronic pain thru to extreme pain - and discussion with a professional is recommended to determine the strength/dose you require. Usually MCO is taken as a number of drops, under the tongue (sublingual). I've used MCO to help control the aches & pains brought on by AIs .... but it is very difficult to get prescriptions in Australia as many GPs refuse to do them - and as the Oil is not available on the PBS - it is a prohibitive price as well, even if purchased from the chemist using a script! :( - basically, legally, it can cost Hundreds of dollars a month, which is ridiculous, given how easy it is to make the oil if you can source the ingredients. Please read this thread for an interesting insight into MCO by a BCNA member who was an ex Police Superintendent ... https://onlinenetwork.bcna.org.au/discussion/7766/why-i-support-cannabis-law-reform/p1 If you would like to know more about the use of Medicinal Cannabis Oil in the treatment of Cancer .... register for these! Here is a US Webinar presentation (that will be recorded - tho you need to register to be able to access to recordings) ..... as it is 4am Aussie time!! Watch it at home, at a convenient time. Join Liz Roglan present on a 2-Part Series called Medical Cannabis and Cancer: What You Need to Know . The webinars will focus on the medical, evidence-based, botanical data and research, including a variety of patient case studies, all cited & peer reviewed literature. REGISTER HERE - you can add a question at the time of registration: Part I- Cannabis 101 the Plant & How It Works within Your Body https://us06web.zoom.us/webinar/register/6816463220927/WN_jED8sRV1Sk2qOT49AZCHIQ Monday, April 4, 2022 at 10 AM PST | 1 EST (4am Aussie Time!) Part II- Practical Applications in Cancer Care https://us06web.zoom.us/webinar/register/5516463230179/WN_CKJkdjmkTiKXVJajSRZmdg Friday, May 6, 2022 at 10 AM PST | 1 EST (4am Aussie Time!)
Joint pain after treatment has ended
Hi lovely ladies, I'm just wondering if any of you have experienced joint/bone pain once your treatment has ended? I finished Chemo 6 months ago and at night experience pain particularly in my hips and down one leg. Its not there all the time. I am taking Exemestane tablets which I am unsure if they are the cause. Thank you in advance xx
