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Nellie
Member
since
07-08-2017
33
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20
Hugs
24-01-2020
10:05
Hi I'm doing OK on the ribiciclib and fulvestant. I'm on week 3 of cycle 2. No real side effects as yet so hopefully it will be OK for a while. I also take ad cal for bones every day and have bone injection each month too. Bloods so far have been good. I do have a weird appetite. Sometimes I'm hungry but other times I just can't be bothered with food. If you take adcal I've been told to take it 3 hrs before or after other meds as it stops absorption of other meds. Scary as I'd been taking it for one whole cycle prior to being told this! Enjoy the hairdresses. Nothing like a good hair treatment to lift the spirits. Love Nellie x
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18-01-2020
11:51
Oops sorry yes it's OGX biotin and collagen. If you Google it you can see a photo then buy in boots, Tesco etc. It's around £7.00 a bottle but lasts for ever as you don't need much. I use the shampoo and conditioner. X
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18-01-2020
11:05
Hi I stopped having highlights when I was first diagnosed in 2017 and haven't had them since. I was told the trial drug I was on at the time and letrozole would thin my hair so thought ok I will put up with the grey and as it turns out there hasn't been too much grey and only slightly thinner. It's great your hairdresser can still do it though most hairdresser I've been to have been scared to try. I miss having that blond lift now and then. I can recommend biotin and collagen shampoo. I have used it since diagnosis. It was recommended on the cancer website and is easily available in most supermarkets. Enjoy your trip to the hairdressers. Take care xx
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17-01-2020
05:14
Sorry Nicky haven't got a clue how to cut and paste it all. I have tried 🙄 xx
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17-01-2020
12:21
4 Hugs
Hi i just had to let everyone know about Boots travel insurance. After my diagnosis of secondary BC to liver and lungs I informed my travel insurance company Saga, who my husband and I have annual insurance with. We have a holiday booked for Japan in April for our 40th wedding anniversary. I'm on hormone treatment and my oncologist says I'm fit to travel. But Saga said no. They could'nt seem to accept that I have not been diagnosed as terminal and said im over the threshold for them to cover. They even advised that my husband go elsewhere too, as if he cancelled because of me, he wouldnt be covered. We have asked for a refund which will be given pro rata. Several other insurances also said no. Which began to make me feel like a bit of a hopeless case. But then I rang Boots. Yes, all the same in-depth questions were asked but this time the answer was yes! Single trip cover was less than £300 for me £400 for us both. All detailed documents were sent for us to read and approve. I can't tell you how it felt to find an empathetic listener who agreed to cover me for what should be a fantastic holiday. Thank you Boots! I just need to stay well enough to travel when the time comes☺x
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17-01-2020
11:58
Hi sorry to hear your news about your liver. What a pain afer being stable for so long! Mine is in my liver and lining of my lung. I started the same meds you are about to take a month and a half ago. So far so good. No real side effects and bloods and ECG all ok. I take them in the evening but have read many ladies are told they have to take them in the morning. My onchologist was happy to leave it to me. I took letrozole for the primary in the evening with limited side effects so thought I'd do the same with these. I know it's early days and as time goes on side effects may hit me, but for now coping well. Not always easy but thinking about the NOW helps me. Hope you get on ok with it. My onchologist said it's fantastic treatment. Take care xx 💕
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17-12-2019
01:12
Hi Kinden, Good to hear your treatment is going well. I haven't started fulvestrant yet have the first on Friday. I'm on the 7th day of Ribociclib and it seems ok. I do have a cough which was very slight a few weeks ago but is very irritating now. Everyone in the family has colds so its hard to know if thats all it is. There is a slight thickening on my lung whick they said may be cancer related but the onchologist was happy the treatment plan would cover this. I'm interested in the injections you'er having as I'm breathless when I cough. Just read all of that back, sorry gone on a bit. Anyway overall i look well and am staying positive. Lots of love 💕
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11-12-2019
06:43
1 Hug
Ruby I've just read about your CT results. I hope the meds treat you well. It's a worry how they will effect us isn't it? I took letrozole after my primary BC and it was ok. I ached quite a bit but found the brand of letrozole effected this. Dr Reddys and Accord were best for me. Great news about your dad, relief for all the family. Are you going to tell them your news now you're on medication? The support of my family has been invaluable although I hate worrying them too. I'm sending you lots of love. Take care. Stay positive 💕
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11-12-2019
08:19
Hi I'm about to start Ribociclib today then fulvestrant and denosumab on Christmas Eve! Ahh well I have to have it, so will have to get on with it I suppose. Hope you are ok on yours so far. Love 💕
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11-12-2019
08:14
2 Hugs
So I had my final bit of biopsy result back yesterday. Was very relieved that it was Her2 negative which means I can start the plan today. I was told on the 31st of October that the cancer was possibly back. Since then it's been scans and tests and turmoil. My husband and I don't even remember November! I know it could still be a rollercoaster ride ahead but feel positive now treatment is beginning. Love and luck to all. 💕
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06-12-2019
05:55
3 Hugs
Hi thanks for thinking about me. The appointment went as well as it could have and left me and my husband feeling positive. The biopsy showed ER positive as before but the HR result hasn't come back yet. Meds and injections will start if that's HR- So hopefully that will be the case. The onchologist said he's 99% sure it will be. I live in Cornwall so hospitals few and far between. But if meds and injections I can have these at my GPs which will keep life normal as possible. Im 60 now, don't feel old, want to be around d for my gorgeous daughters and granddaughter. Hope all goes well for you both. Lots of love x
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04-12-2019
08:06
Thank you Jefner, it is a difficult time but a better day today. Thank you for your kind wishes. Take care 💕 x
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04-12-2019
08:05
1 Hug
Thank you Ruby. I've had a better day today a d feeling ok. Hope your CT goes well on Monday. ❤ 💕 x
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03-12-2019
03:43
5 Hugs
Hi I was diagnosed on the 31st of October and since then it feels like life has stood still. Original breast cancer was in Nov 2017. Lumpectomy and radiotherapy then letrozole followed. All was ok it seemed except letrozole made me ache a lot as did the zoledronic acid infusions every 6 mths. I had a bone scan a year ago to check pain was wow bro letrozole and when that was clear I was told by onchologist not to worry. Just meds. Then about 6 weeks ago I woke up with pain I my stomach. It felt bad but went the next day. My family pushed me to check with my GP. He said it's the meds. But would like an ultrasound to check my gallbladder. There it was. 3 small tumours on my liver. St s an followed and found a spot o lung and tummy too. Oncho,list said it's treat me for years and hopes it's hormone as the first one. Then meds not chemo. I've since had a full body bone scan and liver biopsies yesterday. Results on Friday. Feeling really scared 💕
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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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