Thank you for your concerns, you are very kind. . I had a long chat with my B/C nurse yesterday as I have had palpitations and we also discussed the bone scan, but I am still persevering with one tablet a day of letrozole. My surgeon wants to see me again this Friday to discuss my reluctance to have the bone scan. I am thinking of agreeing to it (once again).
It isn't the scan that bothers me, it's the 3 to 4 hour wait between the injection and the scan, and having to drink 3 to 4 glasses of water, and walk along long corridors. I have got a degenerative lumbar spine disc disorder which has misaligned my back, making walking very slow and difficult and I have to sit down every 50 yards or so which immediately relieves the backache.
Paulus mentioned self prescribing, and I agree with her that I would not be too happy with any side effect which cripples me. I am running a family home with my two adult sons, who are both on powerful medication for non-curable conditions,so I am their main carer. I am also still driving and have just re-newed my licence, just like Appletree's friend. So of course, I am scared to bits about what may or may not happen in the near future.
Everyone on this forum has their own problems to contend with, yet they have written kind words of support and advice for this stubborn old lady. Just wonderful all round, thank you.
Best wishes to you all.
Hi Tinkerbell, I'm very concerned for you on a few points. I have been on Letrozole for 2 years, plus a trial for Palbociclib for a year . I have had to tweak my Letrozole brand to get one that suits me, and also the time of day I take it. My oncologist is more than happy to chat and explain everything to me. I take a list of questions along to clinic every month, but he invariably answers everything before I can ask! My lead nurse is the same. In fact I pop into Maggies where she is based every week for a cup of tea and chat. It seems you don't have that relationship which I feel has left you short of professional support. I think you have made a very general, and sweeping statement re NHS. Perhaps I'm very lucky as I am not far from both hospital and Maggies centre. This relationship means that I trust their medical advice and know that my success is their success. As I haven't tolerated Palbociclib very well he has altered my prescription and schedule so that I am managing the dosage and consequently my secondary mets have shrunk. I am not a medical professional, and although I think I am very well read on my meds, reading is not researching. Research is funded, has a beginning, a middle and an end. My personal feeling is that twiddling with dosages without any medical knowledge could do more harm than good.
Finally, as the chief Onco here reminds all us secondary BC girls , Google is not a doctor, and the daiky newspapers are not medical journals, no matter what they print.
You appear to be a very strong person, and I wonder if you could use this strength to have a constructive and positive discussion with your professional team, either face to face or on the phone. Are they aware you are self medicating? You don't actually say. I am really worried you are putting your health at risk. Best wishes. X
I was automatically prescribed Evacal D3 1500mg ( apparently these replaced AdCal ) when prescribed letrozole. I have some scoliosis in my lower back, and have had back twinges for years - I'm 63 and was diagnosed in March this year - and the bone/DEXA scan showed 'some' bone thinning. I declined the offer of bisphosophonates though, as I won't risk any 'jaw necrosis' as I have pretty rubbish teeth as it is. ( I think I was extremely fortunate that it was the therapeutic radiography consultant who told me about that, in that it is rare but it does happen - I don't think the oncologist agrees with my self-prescribing, which is fair enough, but I have to live in this body, as much as I appreciate her help and advice ). I've been on Letrozole since June/July. I can't honestly say if they are causing me any problems, but my joints are definitely clicking a lot more !! All the best everyone x
Hi. Yes I do. I take the calcium tablets from H&B with vitamin D combined. I think they are really helping me, so not just in terms of healthy bones, but my legs and joints. I stopped taking them for two weeks in the summer and I could hardly walk. I have no idea if this is scientifically proven. But this is what I have found. Good luck.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.