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Nellie
Member
since
07-08-2017
19
Posts
4
Hugs
04-10-2018
09:40
1 Hug
Hi I take Dr reddys and find I only have aches with it. I get 3 mth prescriptions now to make sure I have it in stock at home. After some trial and error on other brands I asked my onchologist to write to my doctor requesting it. Then when the chemist said they couldn't get it I got it on special order because it's expensive. Felt quite pleased with myself, but it's rubbish really isn't it. We should be able to get the meds that agree with us. Hope you manage to do the same. Take care x
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01-09-2018
02:57
Hi I've been on letrozole for 15 months now and have tried different brands. Finally I found a brand that suits me better than others (Dr reddys). I do have SE with this, but can get on day to day much better than with other brands. I recently asked my onchologist to write to my doctor requesting this be written on my prescription. I now get 3 months supply too. So this month I had a mini victory when told by the pharmacy Dr reddys are a special order, as they are expensive, but I can have them thanks to my oncologists letter to my doctor. Its so wrong that we should have to almost fight for a brand that suits us. Friends who have not experienced bc cant believe this happens. So my message is dont be told no or that all brands are the same. They are not 🤔 good luck finding a brand you can cope with. X
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15-08-2018
11:56
Hi Sue different brands of letrozole are a nightmare arnt they. I not sure they will change that pack for you, I once left the chemist then realised when I got in my car they had give me a new brand. The pharmacist was really reluctant to change them and I had to go back to doctor. Only this morning I went to chemist with my prescription and was told I may not get Dr reddys which doctor wrote on prescription for me and onchologist agreed I should stay on. Apparently these are too expensive. I'm waiting to hear from doctor now. Who'd have known there could be so may problems with the meds that follow breast cancer? Good luck, hope you sort it out. 😊🤞
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10-08-2018
08:07
Morning Suehum, I know what you mean. Theres alot to take in, im still having treatment letrozole for 4 more years and zoledronic acid infusions every 6 months. I also had a bone scan recently too but thankfully that was all clear. I felt really scared of the trial but my family thought I should go for it. I remember thinking I will ask all the questions I can before I agree and then to my husband's surprise I agreed at the meeting. It just felt right. So ask them all you can then decide. Try to take every step at a time. When do they need go know?
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09-08-2018
10:26
Hi again. Yes some side effects but nothing too difficult. Hot flushes and stiff joints mostly. Try to get the same brand of meds each time. This can make a difference also I take them in the evening which seems to help. Hope you decide what the best treatment is for you soon. Once you know and get started it all seems a little more bareable. Take care and keep in touch if I can help at all x
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09-08-2018
02:15
Hi yes this happened to me too and I agree it is a difficult decision. My diagnosis shook my world. My tumour was 24mm and I was given the option of letrozole along with a trial med for 14 weeks. This was in May 2017. As my daughter was about to give birth in June I decided to go for the trial and hope for the best. It gave me time to think about things and as it turned out to help my daughter when she had the baby. This was important to me as much as getting rid of the cancer. I was fine and the tumour shrunk to 17mm by surgery which was lumpectomy then radiotherapy. I don't regret my decision. Hope this helps a little. You have to go with your gut feeling. Lots of love and best wishes. X
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05-06-2018
07:06
I can't believe I've been put on yet another brand! I began last year on Dr reddys from hospital pharmacy. This was part of a trial with another drug. I got on brillantly for 14 weeks until trial was over. Then when trial was over I went on Manx which was ok. Headaches, hot flushes and aches but manageable. Then Sandoz that was good better than manx but very soon unavailable. So Accord next, more aches and hot flushes. But yesterday back to Dr reddys! I was happy about this based on past experience but the first tablet yesterday has left me with a horrible headache and drowsey feeling like I'm hungover ( chance would be a fine thing! Can't tolerate alcohol now). So tonight I reluctantly take tablet number two. I ask the doctor each time to write it on my prescription to try to keep brand the same but he 'forgets 🙄 Sorry to rant. I know that letrozole is so necessary, but just wish it was simple!
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14-05-2018
02:22
Hi I was measured and fitted at m&s and am still wearing the two bras I bought. But after surgery I was advised to buy a simple sports bra. Couldn't find one but found ASDA on line did a range of supportive, light but inexpensive bras which were perfect. Worth a look. Hope you find what you need soon. Take care x
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13-05-2018
07:50
Hi I have lympodema 4 months after radiotherapy . I felt sore and my skin was thick like Orange peel. Bcn referred me to lympodema clinic and I have massage there every two weeks and wear a compression sleeve daily. At first I was worried about the sleeve just another thing! But I've coped very well with it and I massage myself each day too. The nurse at clinic , who is amazing, says I can choose when to wear sleeve now as things are looking and feeling so much better. I hope you get this sorted soon. It's all doable but another thing to get through. Lots of love and best wishes x
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13-04-2018
09:46
So sorry to hear your news. Just wanted to send you lots of love and hugs. Take care xx
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25-11-2017
04:59
Thank you Ali49 I had a long conversation with BCN and feel more positive now. They are all amazing people and I know they are taking the best care of us all they can, but thank you for reminding me it's gone! Something I can't quite get into my head at times, regardless of the constant reminders from my lovely husband. Take care x
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24-11-2017
08:20
Hi I'm not new to the forum. I've actually been guided by you lovely ladies for months and have learnt a lot from understanding the medical terms to knowing to expect blue wee! So thank you all for that. Until recently I've coped so well. Diagnosed in April. 23mm ER+ HR negative no lymph node involvement on scan. I was perfect consultant told me for a trial of 2 hormone drugs that would shrink and stop tumour spreading. More monitoring would be involved and biopsies along the way. This gave me breathing space which I wanted as my daughter was about to give birth in 8 weeks time, first grandchild. I wanted it to be her time not mine. So I popped the pills each day, carried on working and had very little SE so all good. Tumour shrunk and then 3 weeks ago surgery happened it went well. Results came surgeon said clear margins in breast but one of two lymph nodes involved. All along they have said it's unlikely I would need chemo and this is thought after the big meeting to discuss me is still the case, but now more radiotherapy on armpit too. I was a bit down about node involvement but got used to the idea and accepted it was still as I was told good news. Yesterday I was totally shocked to find in a letter which has gone to GP that the tumour which started at grade 2 is now grade 3! Tried to call BN but was told they would ring back and I'm still waiting. So sorry for the long explanation but actually feel better already writing this all down. My husband has been amazing but looked so worried when I today him. Love to all x
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01-10-2017
12:31
1 Hug
Hi everyone. I have been reading your posts ever since I was diagnosed in May. I have responded to a couple and sent hugs but so far have had little to say as my treatment has gone really well. I was put on a trial of hormone treatment including letrozole to shrink a stage 2 23mm tumour. Over 14weeks it has shrunk to 10mm and I've felt fine on Dr Reddy's Letrozole from hospital. Thanks to you lovely ladies I was fully aware that there are other brands and that they can cause havoc. So last Tuesday when the trial ended and the hospital said I now have letrozole from my GP the battle began. I have surgery on the 23rd of October so staying on the same brand was important to me as I have been fairly well. The GP agreed, then called later that evening to say no go on Sandoz. I asked to speak to another GP he was really arrogant and tried to say thet all brands were the same. Thanks to this forum i know that is rubbish and told him so. After what turned out to be a heated discussion he admitted Dr Reddy's were too expensive but gave me a prescription for one month to get me through surgery. I have now been told Dr Reddy's is made in India and has been withdrawn from the market due to poor quality control. So back to square one. Last night I took the first Sandoz and hot flushes kept me awake and I'm suffering again this morning. I am scared to find out what comes next. Sorry for such a long rant. I know I have been lucky so far. Love and hugs to you all. X
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11-08-2017
11:17
Hi is anyone taking part in the pallet trial? I'm on week 12. It involves taking letrozole and palbociclib. The plan is to take this before surgery to reduce the tumour and then have a lumpecomy and radiotherapy. All is going well for so far, i feel ive been very lucky its shrunk by half. Would love to hear from anyone thinking of starting or already involved. I'm beginning to fear the next steps now. When i first started i was terrified to take the meds for fear of the long list of SE but have managed well so far. Reading all of the posts from you lovely ladies has really helped me stay positive. Best wishes to all, take care x
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07-08-2017
08:20
1 Hug
Hi Nikki Just want to send you hugs. It's horrible when you first find out and the feeling of wanting to get out of your own head for a while is much needed. I continued with yoga. The one I go to is very relaxing and really helped for at least an hour. Also I love meditating and a site called fragrant heart which is free meditation was brilliant to keep me positive. Hope all is clearer and easier to face for you soon. Lots of love xx
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07-08-2017
05:35
Hi Sue. I've been on Letrozole for 10 weeks and no real side effects touch wood. I sometimes have tender breasts like before a period and hot flushes too. But I've been really amazed as my tumour has halved in size. So stick with it if you can. Best wishes x
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