it wasn’t as bad as I thought especially when I was with the peope having chemo as it was free chocolate and biscuits and coffee there.When I was on my own it was in a very draughty room. Worying about it beforehand was far worse. Plus I lost a hearing aid and kept asking where the nurse had put it, then found it was in my ear all along! i was convinced it had got lost when they tested my temperature using a themometer in my right ear.
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Cipla, 2.5mg. YES. 8 MONTHS. AFTER B/ Fast
Brand - varies but currently Cresent. Have requested a specific brand (to reduce side effects) but pharmacy has no control, can only buy what are the listed brands in warehouse
Dose - 2.5mg daily. Taken at night. Seems best time for me.
Started taking after surgery in October 2020. Stopped during Chemo/Radiotherapy. Resumed March 2021 and taken ever since.
Side effects - weight gain - very easy to put it on almost impossible to lose it again Tendinitis in ankles especially left one, has restricted the amount of walking I can do dramatically. Told by Breast care nurse some brands have less side effects & to monitor but cannot request specific brand
a) Which Brand do you take ie Accord;
I’ve been on it for three months and have had Accord, Rudipharm and currently Novumgen
b) What strength is Letrozole prescribed?
2.5mg
c) Side effects Yes or No
Yes - mainly hot flushes and aching bones (but it’s hard to tell what is still chemo/radiotherapy related!)
d) How long have you taken Letrozole
3 months - due to take it for 7 years
e) Particular time of day you take your Letrozole
Just before bedtime
Hi Seagulls, how are you? Did you manage to sort out a Dexa scan? I’m surprised they didn’t give you one once they put you on Letrozole. As you might remember, I’m currently recovering from a mastectomy after having the dreaded recurrence of Lobular breast cancer and so have been put on Letrozole for 10 years and I was given a Dexa scan, results came back as having Osteopenia, so I’m on high dose Vit D and calcium. I’m also taking K2 which is good for helping Vitamin D pass into the bones I’ve been told.
Sending you lots of hugs x
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I’m answer to the survey:
) Which Brand do you take ie Accord;
I’m currently taking Amarox but have had different brands.
b) What strength is Letrozole prescribed?
2.5mg
c) Side effects Yes or No
Yes - started with hot flushes but they have calmed down now. Having some problems with my legs aching and losing strength, finding it hard when I first get up and trying to get off some seats or off the floor. Also weight gain, even though I exercise a lot more now and watch what I eat I am struggling to lose weight.
d) How long have you taken Letrozole
4 months - taking it for 10 years
e) Particular time of day you take your Letrozole
Usually about 8pm
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Are bone scans to be expected post chemo / before starting hormone therapy?
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@sbee I suspect it’s a postcode lottery. My onco team want me to take letrozole for 5 years (I’ve finished chemo after surgery) and when I asked for a scan I was told I had to go through my GP. 3 weeks later having got a phone appointment the GP asked me lots of questions (bear in mind I’d explained my reason for asking for a scan) and said I was too low risk for the NHS to pay for a scan. I went back to oncologist who also said she couldn’t help. So I’m paying for one myself (as it happens it’s tomorrow), £225. So don’t assume anything!
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Hi sbee, All hospitals seem to have different approaches. A DEXA scan was mentioned on the first day I received my diagnosis along with all the other things I was told then nobody mentioned it again for months. After I’d been taking Letrozole for about six months I asked about it and the breast care nurse arranged a scan “to provide a baseline”. I’ve been wondering whether to ask them again because more than two years have passed and I haven’t got an appt for scan number 2 yet.
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@sam1204 & @magl - thank you both so much for your replies. I feel very lost in the system.
I am concerned about my bone health & base line. I have entered the menopause since chemo and ache a lot. The team want me to start hormone therapy which i am reluctant to as of trauma and more side effects. I don’t understand how I / they can monitor any changes (if i took HT) if they don’t know this… x
@SueDerb I discovered I have to watch my consumption of AdCal - calcium + Vit D. After two years I thought to myself that I ought to be tested so I managed to wangle a blood test. The surgery rang the next day to tell me to stop taking AdCal immediately because my calcium levels were too high. Having high calcium levels is just as bad as having low ones. My GP said I’m probably getting enough calcium from my diet. The surgery wouldn’t give me a firm answer about whether I should stop them permanently or not so I decided to have one a day instead of two.
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Reading all these messages it seems to me that it depends on what hospital you are at.
When I was diagnosed with the recurrence I couldn’t have radiotherapy because I’d already had it on that side and there was no reason for me to have chemo, so I was told next steps would be CT scan to see if it had spread, no spreading so I was told I would be on Letrozole for 10 years. At the same time I was told that I would have a DEXA scan because of the side effects of Letrozole and then have another one 3 years later. After my Dexa results I was told I will get another scan in 2 years time. I’m not sure if it’s because I had a recurrence, although my cousin had Lobular breast cancer as well, first time for her and she also had a Dexa scan with a follow up in 3 years because she had no problems, she lives on the Isle of Wight. It’s strange isn’t it. I would say my cousin has had much more support than me too.
I hope you manage to get a DEXA scan and it puts your mind at rest.
I’m not on Adcal, so again it differs doesn’t it, I’ve also read some people having fusions to help but I just got a brief message saying i need to take Vitamin D and calcium which was prescribed, I also take K2.
xx
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Postcode lottery. No one I’ve told about being refused a scan on the nhs can believe it when you consider what drugs they want me to take and the impact on bones. It’s fairly unbelievable.
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Agree. X
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A. Accord
b. 2.5 mg
C. Yes. HAnd and shoulder pain. Sleep issues and dizzy when I’m on my week off of Kisqali
D. 9 months
E. Mid morning
- The Kisqali taken with the letrozole taps down some of the side effects.
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