Early Days on Letrozole
So, I started taking Letrozole on the 1/6/18. My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time. Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray! Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat! I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps. I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on! Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know. My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well! My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xoxAfter a break, Letrozole, continued...
Drug holiday over, today I started taking Letrozole again. At night this time. Don't know that it will make any difference but worth a try. If/when (she said optimistically) the side effects return, I'll start my curcumin trial. It's been really really good to be pain (and dandruff) free for a few weeks. I feel it's given me a boost, and more strength to continue. If the side effects don't settle down my oncologist was quite keen to put me onto Tamoxifen. From what I've read here I'm not so sure. Better the devil you know...?It's Letrozole For Me
Saw my oncologist this morning. She is giving me two to three more weeks to heal from the BMX & reconstruction and then it's on to Letrozole for 7 - 10 years. She said it makes no difference which AI I start on and alternates with each patient! She said seven years but it may be 10 as there are three clinical trials due to mature in that time. She said that it will almost certainly give me stiff joints which I'll have to manage with exercise & supplements like krill oil. She reported that other women have had success with turmeric and other supplements. I will work through all recommendations in my own clinical trials. Suggestions welcome! As I'm only (ha!) 51 and was still menstruating when I was diagnosed, she'll monitor my ovaries with blood tests every three months to see if they show any signs of trying to get me to do so again. If they do it's a monthly injection of Zoladex into the belly. Oh joy... The exercise physiologist at the BCNA Life After Breast Cancer information night was very interesting and informative. So I'm starting to plan what my exercise regime is going to look like. I think maybe something like yoga once a week for stretching and stress management, weights twice a week for warding off the osteoporotic side effects of Letrozole and improving my metabolism, and walking for at least an hour six to seven days a week for cardio health, fat burning and joint stiffness. Does that sound about right? Apart from being a massive time and money soak that is...
What to expect when coming off tamoxifen - your experience?
In a few months time I come off the hormone blocking drug, tamoxifen, which I'll have been on for ten years. What withdrawal symptoms can I expect to feel and how long may they last before returning to 'normal'? I ask because a few years ago, I forgot my drugs while on holiday, and didn't have it for a couple of weeks and instead of hot flushes reducing (which is what I expected), they seemed to get worse and I felt yuk and a bit 'all at sea'. I'm 58 now - not sure if that's relevant . What's been your experience?
Mum recently diagnosed
Hey all, I've joined this forum in the hopes of connecting with others. My mum is 69, diagnosed with breast cancer 2 months ago and now has been diagnosed with metastatic BC in spine and possibly lungs (they arent 100% sure on the lungs) as the spots are so small. Shes started oral chemo and hormone therapy today and will see the oncologist again in 5 weeks. She seems to be handling it well so far but she's not feeling sick or anything yet so i guess time will tell. Im sure its going to be a long journey and I'll be here to support her every step of the way. I currently live with my mum so im glad Im here to be there for her. I just wanted to pop in and say hi.
A side effect Chart for most of the Hormone/AI tablets ... on one page
I found this chart a while back, when researching Hormone Therapy/AI side effects - and thought this a good one with most of the oestrogen blocking meds on the one page, in groups, & showing 'most' of the side effects in an easy to read format. Please note - I wrote the 4 'boxes' of info along the top - with the alternative tablet names and explanations of the different groups of tablets. If you have MORE symptoms than listed here, feel free to add to the list in the comments below! (I can even add more dots if you like!) For Aromasin/Exemestane - I can add: Dry Eyes Extreme Hand and thumb pain Hand and thumb weakness - inability to hold/open things - I can't even tear open an envelope! Weight gain Occasional Back Pain (that I will be keeping an eye on!)
More research needed into side-effects of chemo and hormone therapy
In our BCNA network, many members report unexpected, painful and ongoing side-effects during and after chemotherapy and hormone therapy; for example in a recent discussion on ‘hormone therapy and tendon issues’. Sometimes treating medical staff seem to be unsure about causes and best treatment for side-effects. I read a study 'Incidence and severity of self-reported chemotherapy side-effects in routine care' (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184360#sec013 ) This study reports that knowledge about side-effects comes largely from clinical trials. There is little evidence coming from normal clinical care. In this study 449 people with breast, lung or bowel cancer were interviewed and asked questions about their side-effects. The study found that “3/4 of individuals undergoing chemotherapy in NSW will experience multiple side-effects during their treatment, and for over 60% this will include a serious side-effect.” The study found that side-effects were similar across the three cancer types. The authors suggest that “this information is useful for both clinicians and policy makers, who typically make treatment and funding decisions for standard practice, but often on the basis of potentially unrealistic clinical trials. This work also confirms the need for side effects to be collected using patient-reported methods, to be monitored throughout chemotherapy treatment, and highlights the importance of observational data in providing information for decision-makers that is relevant to the clinical practice setting.” Have a look at this study; it is very interesting and readable, and brings up lots of questions and ideas. Although this study is about chemo side-effects, and does not include hormone therapy side-effects; I am thinking that a similar study is needed to measure hormone therapy side-effects in the real world.
