26-10-2018 01:35 PM
Well done on the Letrozole! I genuinely believe that reading about other people's side effects can influence what we experience, and I anticipated having every awful SE under the sun, but it's fine! I'm sorry to hear about the bone scan; perhaps you can schedule it for another day when you feel more mentally prepared for it? At the end of the day, it *is* your choice.
Keep us posted, OK?
26-10-2018 09:11 AM
It's very good that your BCN is kind, sympathetic and ready to act as your advocate; don't every feel that you shouldn't contact her because other patients have a greater need, you are just as important as everyone else.
As for Macmillan, it's not necessary to have been asigned to them by your hospital in order to obtain help from them. You can phone them on their advice line, Macmillan Cancer Support, at 0808 808 0000, and find out how they can help you in your part of the country. A friend of mine who lives in a rural village in North Yorkshire, who hadn't been assigned a Macmillan nurse either, contacted them and was able to arrange for weekly home visits from a Macmillan nurse who gives him counselling sessions to help him cope with everyday life. He has cancer of the bone marrow, but at present is still able to live a reasonably normal life and can still drive. Thanks to this nurse, he is able to keep more cheerful and make good use of everyday to his satisfaction, whilst allowing for fatigue and other limiting factors.
All the best, and I do hope you can enjoy some pain free time.
26-10-2018 01:35 AM
Your comments have been taken on board, but again unfortunately a Macmillan service was not offered so I am really on my own with this.
Maria, I do agree of course, that having no s/e's does not mean the drug isn't working. I think I just wanted to give myself courage to continue.
But hurray!! I have taken a letrozole tablet on four consecutive days with no s/e's, although I think I must have some anastrozole left in my system from two weeks ago, which is a bit worrying.
To put the cat among the pigeons, and inciting lots of arm waving from all the ladies here, my surgeon offered a bone scan to see if the cancer had spread to my hips as I had pain (from osteo-arthritis). I agreed to it, but when the appointment arrived, it was a 3 to 4 hour wait between the injection and the scan which could take up to an hour lying still without moving.
No contact to be made with another lady to pass the time to talk to in case she was pregnant or had a small child in tow, as I could be giving out radioactive something or others. I didn't like the sound of all that, so after discussing it with my BCN, I asked her to cancel it, and she agreed immediately as she had that scan herself and knew what it entailed.
I was torn between knowing what was what, and staying in ignorance. After all, ,ignorance is bliss and tis folly to be wise.
To add to your comment, my son said the other day, Mom, you have to die of something. Having enjoyed a healthy, happy life so far, full of activities too numerous to mention, I will be grateful for a few years yet but it would be nice if they were not painful and miserable.
Best wishes and hugs to everyone. Keep smiling.
25-10-2018 01:32 PM
I agree with everything you said, specifically re-biological depression and the possible effects that estrogen depletion/endorcrine therapies may have on these particular individuals. I also agree with what you said re-women who have predisposing hormonal imbalances. It shouldn't be a "one size fits all" approach with these meds, but sadly it is. I'm also really pleased to hear that you had a clinician who was able to advocate on your behalf.
Side effects, indeed, need to be taken seriously, and I also agree that quality of life is important.
We all have to make decisions that we feel are best for *us*, and I ditto your final sentence-we will all die someday.
25-10-2018 10:19 AM - edited 25-10-2018 10:31 AM
Marla, I am sure you are correct that there are many factors to consider when explaining side effects different women experience with individual AIs and with Tamoxifen.
Not only does smoking and obesity (as opposed to mild over-weight) contribute to a range of health issues, but other cancer treatments can cause long-term problems. There is evidence that women who have had chemo involving taxanes are more likely to get more severe joint and muscle pains with endocrine therapies than women who have had no chemo. (I'm not suggesting people should avoid chemo for that reason. )
There is also the question of how oestrogen depletion affects individual women. As all endocine therapies are designed to block oestrogen by some means, this is something to take into account, along with possible long-term effects of oestrogen depletion on the body as a whole, including the brain. Again, different women are likely to have different medical profiles. A specialised nurse on the Breast Cancer Care site told me that most women who have a history of depression find they have to come off endocrine therapies. I'm referring to severe depression of a biochemical nature, and not the general distress of having cancer or dissatisfaction with everyday life.
Having been on Anastrozole for 9 1/2 weeks, and having eperienced a gradual increase of the severity of a range of side effects to a debilitating level, I stopped taking it. My BCN referred me to a clinician in the local Breast Clinic. The doctor, who had specialised in cancer treatments for 20 years, took my concerns seriously, especially as I have a long history of problems with hormonal imbalance: PMT as a young woman, the menopause, HRT, coming off HRT (I was ill in bed for a week) and then having to cope with the menopause difficulties without any assistance, which took some time.
The clinician wrote a very helpful letter to my Consultant Oncologist (I wasn't due to see him, or more likely his registrar, until the end of January), asking him to give me an appointment to see him personally within the next few weeks, with a specialised pharmacist present.
The clinician was disarmingly honest, said she knew very little pharmacology herself as she left it to the pharmacists in the cancer hospital, and that I needed specialised advice which she couldn't give. She also obsered cheerfully that very few doctors know much pharmacology and, as every patient is different, the approach is to prescribe one drug, and if that causes problems to try another, until a medication is found which the patient can tolerate. She observed, with a big smile, that the knowledge held by the medical profession is very limited in comparison to what is unknown.
Another problem is that pharmaceutical companies, on whom research depends, focus their research on the benefits of their products, and do not explore the adverse effects. So, adverse effects are picked up on and listed by a gradual process during trials and through the yellow card scheme. I have been told this by a consultant pharmacologist whose research is funded entirely by pharmaceutical firms. New drugs, once licensed, are strongly promoted by their manufacturers as the research is very expensive and the pharmaceutical industry needs to recoup the money they've spent, promptly.
Before trying another endocrine therapy, I shall be weighing up very carefully the possible benefits against the probable problems, especially those that are likely to be long term, taking into account my medical history. Quality of life is extremely important to me. There is no point in making myself ill to the point of being dependent on other people, simply to extend life by a few years.
The reality is we all have to die some day.
24-10-2018 02:09 PM - edited 24-10-2018 02:10 PM
Just to add: I think that whether a woman experiences some of the side effects (i.e., joint pain) may also depend on their pre-Letrozole health, and mobility, etc. For example, I have osteoporosis in my family, though I haven't yet had the bone density scan (my oncologist is not in a hurry to scan me), and so I don't know if I have osteoporosis, *but* I have always been relatively "supple", and flexible, in good physical shape, and my BMI is at the high end of normal (I love a potatoe)!. So I'm not obese, I *am* in the normal weight range, but high end of normal, and just wonder whether joint pain is related to BMI or weight? I'm only putting this out there because my mother has severe joint pain, bursitis, is awaiting a double hip operation (both hips) and is overweight. Her weight and pain make it hard for her to mobilize. And so I see what weight can do to one's overall health. It's just a thought. My main point is that I think it's really important we consider *all* possible factors in what might be contributing to a particular side effect, before concluding it's the Letrozole.
24-10-2018 02:00 PM - edited 25-10-2018 01:42 PM
I couldn't agree with you more re-the side effects one experiences with Letrozole depend on how far into the menopause they are and whether they were on HRT. I've never been on HRT and was confirmed "post menopaussal" when I started Letrozole. I probably had very little estrogen in my body when I started on Letrozole. I haven't had a hot flash in months if not years and if I do get any now, they are short-lived (over within 20 seconds)-it's more like a "wave" of heat, but nothing my A/C (in my car), or a hand held fan can't help with.
24-10-2018 01:57 PM
24-10-2018 01:51 PM - edited 25-10-2018 01:35 PM
I just thought I'd throw my two-penneth in because I, too, am on Letrozole (about 2 weeks in) and luckily, bar the occasional joint pain (on a scale from 0-10 it's a 5-6 but duration=2/10 so very tolerable), I just wanted to pick up on:
"Now the side effects have stepped up, but surely this is confirmation that the drug is working properly".
No, this is not necessarily the case, because this would also suggest that women who are not experiencing side effects (SE) are not gaining the full benefit of the drug, i.e., the drug isn't working.
It's a myth to think that side effects mean a drug is working and the lack of SE's mean it isn't. I just thought I'd point that out. Some women have SE's and others don't but this is not an indication of whether the drug is working. You'd want to have further ultrasound scans etc. to check whether the cancer is shrinking. I understand that Letrozole has been shown to shrink cancer (not all cancers, but some, i.e., ductal ones if I'm not mistaken) and a scan would be the way to assess whether the drug is working-not the side effects.
22-10-2018 03:16 PM
22-10-2018 03:03 PM
22-10-2018 02:39 PM - edited 25-10-2018 06:25 PM
Firstly, many thanks for the info regarding the size of the tablet. It did not occur to me about the extra packaging. That's a relief and very helpful.
Your comments re. website information contradiction makes sense also. Yes,I could make an appointment to see the oncologist but the clinic at my local hospital has been moved to another hospital across the other side of the city. This hospital is huge and I hate to "take a seat" for an hour waiting time. It is at least a two week wait to get a GP appointment just for advice when dozens of patients want appointments more urgently than me
Another thing, a lot of the cancer forum threads are from ladies whose oncologists have told them to take a month or more holiday from taking it. Or they go away on holiday and do not take it until they return after three weeks or so (and dread starting it again)
I will do my very best with this new drug.
22-10-2018 01:48 PM
I am in the UK too, and am fully aware it is possible for breast cancer patients to obtain information and advice from their Oncologist and GP by making appointments. I do this myself. Your BCN can assist you to do this. It is far better than relying on 'advice' from Internet sites and forums, which can be seriously flawed.
As for research on the Internet, reputable sources of information such as Breast Cancer Care, Macmillan and Cancer Research UK, all advise patients to keep to the full dose of endocrine therapy unless otherwise advised by their Oncologist. They advise against lowering the dose.
If a patient has forgotten a dose of their AI, Breast Cancer Care and Macmillan booklets advise not to take an extra pill because some of the previous dose is still in their system and they would than have too much of the drug, which has its own dangers. This advice does not translate into 'it's all right to lower your prescription and have your pill on alternate days'. They are simply saying that if you miss a dose, it is better to wait for the next time it's due and be slightly low on the drug for a few hours, rather than overdosing. They don't mean you can keep skipping doses; they all say that to do that can decrease the protection given to you by the drug. They strongly advise that you should keep to the stated dose, unless otherwise advised by your Oncologist or GP.
There are many Internet sites which hand out misinformation and are not reliable. On researching online, it is advisable to keep to the NHS, the Lancet, NICE and the BMJ for searches.
All the best.
22-10-2018 01:14 PM - edited 25-10-2018 06:28 PM
After reading the information booklet given to me by the BCN, I did hours of research both on anastrozole before taking it, and also on letrozole.
Below is the thread I posted re. anastrozole side effects.
"After having two lumpectomy ops. I have been taking anastrozole for five months.
Hours of research revealed it is a very powerful drug and very effective at blocking estrogen production. Also that if a dose is missed, there is sufficient in your system from the day before. This is also stated in a booklet the hospital breast care nurse gave me.
The website said that estrogen should be controlled not squashed and that 1mg on Mon/Wed/Fri would be sufficient.
I started with 3 to 4 tabs. a week for one month, then tried 2 days with and 1 day without. Now the side effects have stepped up, but surely this is confirmation that the drug is working properly.
The doctors will simply prescribe 1 mg. a day to one and all, as it would be time consuming to say start slowly and build up the dose gradually. but I thought it was worth a try"
Here in the UK. we do not have oncologists to informally chat to. We only have the BCN. We cannot informally chat to the GP either.They have not got the time or the know-how. I always research on-line any new drugs given by the hospital or GP before taking it.
22-10-2018 10:02 AM
You have specified a rather unusual regimen for taking Letrozole. Do you mind my asking, is this an approach advised by your Oncologist or BCN, or is it something you have arrived at yourself?
It is very important to take medications in the manner we are advised, or they might not be effective at all. Different drugs will have different doses to allow for differences in their chemical nature. Some medications need more packing in the tablet than others, so will be administered at what appears to be a higher dose. It doesn't mean that a drug given at a higher dose is going to be more powerful or have worse side effects than one at a lower dose. You might find it helpful to ask your pharmacist about this - I'm sure they can put your mind at rest.
The half-life of a drug is the time required for the concentration or amount of drug in the body to be reduced by one half. It doesn't mean there is enough in your system to skip doses, in fact it is very unwise to do this unless advised by the doctor supervising you. (Forgive me if you are acting on your Onc's advice.) For some drugs to be effective, it is important to maintain a particular level in your system.
You do need professional, expert advice on this. Your problems with Anastrozole could relate, at least in part, to the effects of oestrogen depletion and not purely to the drug itself. Perhaps a specialised pharmacist could help you with this.
All the best
22-10-2018 07:38 AM
Happy Monday Rosie,
was as wondering how your doing, just stopped taking the dreaded Letrozole after almost 3 years, feeling so much better after 3 weeks a little frightening at time asking myself am I doing the right thing ??
Wishing you you lots of luck Tili x
22-10-2018 12:25 AM
I am starting on letrozole this week after stopping anastrozole (Arimidex) after six months because of evil side effects. I am going to take it every other day for two weeks, then I will take it two days then miss a day for two weeks and so on.
I did this with anastrozole but I could not manage 1mg a day of it. All the side effects kicked in big time after two months of slight s/e's. Really awful time.
Letrozole has a "half-life" of two days, meaning I can safely miss a dose because there is enough in my system from the day before. According to the little booklet the breast nurse gave me, letrozole can diminish or even shrink existing tumours.
I am worried about the dose being 2.5 mg whereas anastrozole was only 1 mg. Can anyone help me on this please? Is it a more powerful drug which can turn out to be worse than the anastrozole (anasty tablet).
14-10-2018 05:35 PM
Going back to your first question, I agree with Loolarch and Sandra49. Most people are drawn to a web-site like this once things have started to go wrong, so the comments are bound to be more negative. You are unusual in thinking ahead and looking for the pros and cons.
I took Letrozole for about two and half years before I realised I was in trouble. During that time, I was regularly asked how I was getting on with Letrozole and I thought I was OK. It is difficult to tell the side effects of the drug from the effects of the menopause. I was 69 when I started on Letrozole, so way past the menopause. I only gradually realised that I was getting more cramps in different places and feeling in more of a fog than before. Was this menopause? was this ageing?
Two things made me question the drug. I developed glaucoma and was worried there could be a connection with the Letrozole. The cancer specialist went through the assessment tool with me. The connection with eye problems is possibly not really there. Also, it seems the preventative effect of Letrozole is highest in the early years and decreases as time goes on.
The other factor which un-nerved me was that I began to lose weight without really trying. You might have thought I would welcome this, but after a few weeks and a few kilos, I got scared. I have put back some weight now I have stopped the Letrozole. I think I have lost muscle mass, but sadly not the fat. I continue to take the alendronic acid and combined vitamin D/calcium to prevent against incipient osteoporosis. I still get annual mammograms.
This forum has been very useful. It has put my feelings about the side effects into perspective. It is all very individual. However, the drug is a very powerful one, and I would have benefitted from more explanation on how to cope with its effects from the beginning. I signed consent forms for surgery and radiotherapy, but nothing similar for the drug regime.
Pippi - I wish you the best in your treatment. It is good to hear what others have to say, but ultimately the decisions have to be your own. Good luck.
10-10-2018 08:59 PM