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 xoxIt'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...How to prioritise self care?
So self care is the mantra in survivorship right? I need to do gym three times a week for the weight bearing exercises to stave off the bone damage of Letrozole. Haven't managed to work that into my schedule since early last December. On the days when I'm not at the gym I have to walk because minimum of 30 mins a day exercise, preferably an hour. I have to bust stress, of which I have an excess. So I'm starting a yoga class on Saturday morning. Can't use food and booze to stress bust anymore. I have to sort out my head, get rid of the depression, manage the anxiety, so it's a psychologist appointment every two or three weeks. She wants me to journal. I struggle to find the time. She also wants me to spend 30 minutes a day doing something I enjoy, just for me. I saw my dietician today about my failure to knuckle down and lose weight. My willpower is rubbish and as you know, it's like rolling a boulder up a hill trying to lose weight in menopause on an AI. Have to eat a low sat fat diet because of the Letrozole cholesterol issues. I have to cook most days of the week for a vegetarian, three meat-eating teenagers and a Type 2 diabetes octogenarian. There's also the assorted ongoing medical appointments that seem to roll around with remarkable frequency. This afternoon on my way home from the dietician in Town, I received a phone call from my son saying my daughter was vomiting, a lot. She was already home with extreme tiredness and what she described as stress from the overwhelming amount of schoolwork she has (Yr 10). Of course it could be just that, or glandular fever, but my mind goes straight to cancer. Lymphoma probably... I also get an email from school about my nephew (Yr 8) He's got yet another detention after being given several warnings to rein in his classroom behaviour. The teacher is "beginning to wonder if he has impulse control issues". My son, starting uni next week, has done nothing whatsoever about learning to drive or getting a job and has zero money. How does he think he is going to pay for his day to day uni life? He's been sitting in his room playing computer games and watching anime since November. From the beginning of January I've made him cook dinner once a week. My niece continues to be the most difficult of them all. Almost continually rude, refuses simple requests, sulky, terrible sleep issues & much more. So to properly deal with each one of those issues takes buckets of time and buckets of money. GP appointments, specialist child psychologists and who knows what else. About to take vomiting daughter to the doctor now. My self care, if done properly, would take buckets of time and buckets of money. There are no buckets here. If there's a choice I have to prioritise the kids. Any prioritising of myself is already accompanied by massive guilt. I am really struggling to arrange my survivorship life. And that's even before I start trying to find and then hopefully get a job. How does everyone do this? How do I recover fully and lead a healthier, engaged life in survivorship, and take care of everyone else, have a satisfying relationship with my partner, a job, maintain contact with my friends, keep fit, lose weight, not be stressed and feel OKish about everything? Is it actually possible to do at all? Yours from the House of Bad Behaviour and Vomit, K
Beating the blues without antidepressants
Just wanted to share with others feeling down and depressed as a result of menopause or post treatment.... My GP had prescribed an antidepressant for my hot flashes and low mood. Crying a lot and constantly anxious. Anyway stubborn me didn't want to take antidepressants as I live with a husband who has bipolar and I needed to keep my mind clear even with the tears. I've been taking NeuroCalm for months. 1 tab at night to help sleep. My naturopath suggested I take 2 or 3 per day to help with anxiety. Up the dose a week ago and I feel like a new woman. No more crying over spilt milk. Actually feeling rather chilled and don't give a shit about much. 🙄 Still have hot flashes but not as bad. Hope this helps someone xxLetrozole - Year 2
I'm six weeks into my second year of Letrozole. The good news is my hands have remained better since I took a one month break after six months. They still hurt, both bone and joint pain, especially with the cold weather, but they've never returned to the earlier level of pain. My ankles have bone ache 24/7. This pain is now spreading up my calves. It's also spreading into my wrists forearms. My elbows remain sore and the inside soft tissue very tender. I've given acupuncture a red hot go. It seemed to help my hands initially but not so much now. It gives me pain relief for my ankles while I'm there, but none when I'm gone. It's had no effect on the hot flushes. All in all I think I'm going to pull the pin on it shortly. It's expensive and I don't think the results justify the cost. So I've moved on to try osteopathy. Many of you here have raved about it, and I've joined your ranks! It just makes my body feel better. The effect lasts for a few days, it's cheaper than acupuncture, and I get some money back from the health insurance. I've accepted that the five to ten years on Letrozole are going to be painful. There's no getting away from it, so now it's about doing what I can to help me cope. For example, the best thing about acupuncture is the heat lamp. It really soothes my ankles, so I'm going to save up and get myself one. The mental health aspect remains challenging. I discussed it with my oncologist. Cancer or menopause or Letrozole or a combination of some or all? So she has asked me to take a two month break, keeping a side effects diary for two months before, and during the break. That way we'll know what is the Letrozole and therefore if we can tweak the AI in some way. I'm going to do that in the summer so I can really enjoy the break. My oncologist was very sympathetic. She said it's often difficult managing the estrogen drop in women like me, who haven't gone through menopause before BC and then go onto an AI. She had some interesting thoughts about estrogen sensitivity. That in her experience the women who develop ER+ BC are very estrogen sensitive and therefore have a hard time on AIs. She said AIs had been tested on women with ER- BC and they don't suffer the side effects anywhere near as much to zero. She said I'm in the 10% risk range so there's no doubt about it, I have to be on it. I'd very much like not to be the woman who cries on the phone when she's talking to her dietician (who she's met face to face six times) and finds out that said dietician is leaving forever to live in London (a romance)... However it seems as if that's who I am now. Hopefully a 'side effect' that stops when I stop taking the little brown pills. Ridiculous! Oh and my oncologist also confirmed that the joint pain is arthralgia, and won't turn into arthritis when I've finished taking Letrozole. This was one of the questions that I put to the webinar doctors that wasn't answered. There was more but I of course can't remember. My right toe joint is very very sore tonight me so I'm going to take a pain killer and go to bed and try to sleep. BS tomorrow for my next check up. Nothing to worry about but I can't help but feel a bit nervous. I think the worst bit is the flashbacks to diagnosis and all the bad news I received in that office. Nothing for it though, has to be done.
SUFFERING STOPPING HORMONE TREATMENT FOR MENOPAUSE
Hi. Diagnosed two weeks ago yesterday, can’t believe it’s only been two weeks seems so much longer. Daughter is currently in the middle of HSC, so I haven’t told family yet, which sort of makes it seem like it’s not real. I’ve been reading a lot of posts and like a lot of women, I was blind sided getting a call back from Breast Screen Australia, even then thought, nah, not me. One out of twenty, my odds are good. I’ve been to the surgeon and McGrath nurse and now need to make a decision. It would be so much easier if I could get a good nights sleep. As the tumour is hormone positive, I’ve had to go off my happy gel (Estrogel). For the past week the night sweets are back. Anyone with the same dilemma? Any suggestions? TIA
Hot flushes
Hi there - for the last two years during and after menopause I have had the worst hot flushes at night. Cover on cover off all night, even to having a towel with me. BUT since the two DCIS's have been removed - nothing! zippo. Even my brain has had the fog lift, no PMS'y feelings. Has anyone else noticed that? have looked it up but couldn't find anything, if at all its been the other way. Julie.Did your period come back after chemo? If so, when?
Hi. I'm interested in hearing about other womens' experiences in this area. I'm 51 and was still getting my period when I was diagnosed early last December. Definitely peri-menopausal though, I missed two last year prior to BC. I reckon the shock and stress knocked out December's period and by January I was having chemo. My last dose of chemo was in mid-March. This week I've been feeling pre-menstrual. I'm craving chocolate like a woman possessed and today I felt the telltale uterine twinge for half an hour or so, the one I always got a day or two before my period started. Is it possible for your period to come back this quickly after chemotherapy? When we discussed it a couple of months ago my oncologist said at my age (the average age for menopause in Australia) it was unlikely but not impossible that it would return. She's ordered a blood test every three months to check my LH and FSH levels. If they rise from the low levels of my last blood test (during chemo), it'll mean a monthly Zoladex injection. Would love to hear anyone's story. Thank you :) Kate
