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Exemestane for Breast Cancer after care

(42 Posts)
soop Thu 26-May-22 15:46:44

Do any other Gransnetters take this medication? I have developed some troubling side effects. Would be grateful of any input. Thank you.

Kateykrunch Tue 14-Jun-22 09:40:27

dragonfly46

It is a tough one. I would like to stop taking the meds but am scared to do so. So damned if you do and damned if you don't.
I am sorry you have had a reccurence Katey but pleased it has been contained. I wish you a speedy recovery.

Thankyou dragonfly x

soop Fri 10-Jun-22 17:09:47

hulahoop I am sending you my love. X

hulahoop Fri 10-Jun-22 14:33:06

Dragonfly I am with you in the back of my mind is knowing it can come back .I was surprised when my results came back this time,I was expecting another triple neg like first time like Dr said just bad luck to get a new primary .Best wishes to you all .

soop Fri 10-Jun-22 14:22:31

dragonfly Me too. My mother had a double mastectomy and Tamoxifan ? The cancer that killed her, went to her liver. She was 62.

dragonfly46 Fri 10-Jun-22 13:39:14

It is a tough one. I would like to stop taking the meds but am scared to do so. So damned if you do and damned if you don't.
I am sorry you have had a reccurence Katey but pleased it has been contained. I wish you a speedy recovery.

soop Fri 10-Jun-22 13:09:25

Kateykrunch and hulahoop It is kind of you to share your experiences. The AI has been prescribed for a ten year period. I shall be approaching 90 when I finish the course.
As you rightly say, it is us up to the individual to make such important personal choices.
Talking things over helps enormously. flowers

Kateykrunch Fri 10-Jun-22 12:04:07

I have been told I can stop taking my Aromatase Inhibitor next February which completes 5 years treatment. My side effects eased after about 18 months, but of course quality of life is so important (I am not able to tolerate the bone meds tho). I was unfortunate to have another cancer, contained this time rather than invasive, it did make we query why I had taken the AI to then go on to have a new diagnosis, but I have to hope/presume that it stopped it being a worse diagnosis. The jury is currently out on the length of time AI’s are taken for (research ongoing) some take it for 5, 7 or 10 years. Hope everyone is doing a well as possible 💐

hulahoop Thu 09-Jun-22 19:03:05

That's how I felt a few weeks ago Soopnot like me at all it is a big decision to stop but my consultant and breast nurse both say the protection it is giving me is not very much and because I had mastectomy not lumpectomy lowered my risk anyway. I have osteopenia as well and my hair is thin from chemo first time round I think we have to do what is best for oneself and I am not trying to influence anyone I wish you all good health.

soop Thu 09-Jun-22 12:44:33

dragonfly hulahoop and growstuff
It's one buggeration after another. hmm I shall most certainly continue with the hormone inhibiting medication. I do not wish to have to deal with a further episode with cancer. I wish that there was a kinder way of dealing with the matter. I am totally "bushed". So unlike the person I once was.

dragonfly46 Thu 09-Jun-22 12:36:21

I take Exemestane but I very rarely get ITU's. I do get very stiff joints especially in the morning, it has made my arthritis worse and thinned my hair considerably but I choose to take it as I am hoping it will prevent the cancer from returning. I am not sure how long I will need to take it yet. I also take a bone strengthening medication every day instead of the infusions and Adcal.
I recently had a Dexa scan and I have mild thinning of the bones all due to Exemestane.

growstuff Thu 09-Jun-22 11:53:02

Oh dear! This doesn't doesn't bode well. There's no way I'll not take any recommended medication, but the diabetes medication I'm about to start is supposed to be the best and I want to give it my best shot. I sleep badly anyway, so that won't be a huge problem, but I don't want constant UTIs on top of everything else.

hulahoop Thu 09-Jun-22 09:17:53

Growstuff I was taking letrozole and was having nasty urine infections ,I am not taking them at the moment in fact I am reluctant to go back on them ,I was getting headaches as well which have stopped ,I am sleeping better ,my problem at the moment is heartburn /indigestion so I am having a scan later this month .Soop hope this is last infection you have had enough problems 💐to you both.

soop Tue 07-Jun-22 13:10:18

growstuff I hope for your sake that you do not suffer such a miserable side effect. flowers.

growstuff Mon 06-Jun-22 19:54:12

Are UTIs common with Exemestane? I'm about to have my diabetic medication changed to one which also has UTIs as a common side effect, so I find this quite concerning.

soop Mon 06-Jun-22 16:40:28

hulahoop grin I'm half way through the antibiotics for the latest UTI. Already sleeping much better as I haven't the urge to wee every hour throughout the night. The Consultant will phone me in four weeks time. Until then, I'm off Exemestane. I started my post mastectomy treatment with Letrozole. It's a matter of balancing the pros and cons. We must count our blessings. A virtual hug from me to you.

crazyH Mon 06-Jun-22 16:37:29

For all who are going difficult times ..flowers

hulahoop Mon 06-Jun-22 16:24:17

Hows it going soop I have not had urine infection since stopping letrozole and I am sleeping better .I also have 2 pretend boobs.

soop Thu 02-Jun-22 13:12:09

Confirmed UTI and antibiotics prescribed. Have managed to buy some Piriton. Thank you for your suggestions. smile

soop Sun 29-May-22 14:16:19

hulahoop I also take Adcal. A bone protector. If the frequent trips for a wee persist, I shall take a sample to the surgery. It may be that there is an infection.

growstuff You are not alone. We can give each other reassurance. That is a blessing. flowers

growstuff Sun 29-May-22 00:05:05

soop

Sweetpeasue Thank you for your kind words.

growstuff I have a splendid "pretend titty". To be honest, I have had no qualms since the mastectomy. It is what it is. smile

At the moment, the plan is to have a reconstruction at the same time as the mastectomy, but it all has to be confirmed.

hulahoop Sat 28-May-22 22:25:32

Should say nothing comes alone does it .

hulahoop Sat 28-May-22 22:24:17

I have just stopped taking letrozole for a few weeks my nurse agreed that it may be causing the frequent urine infections I have had since starting it !I have also started Adcal I have osteopenia nothing comes alongside it .

soop Sat 28-May-22 15:03:29

Sweetpeasue Thank you for your kind words.

growstuff I have a splendid "pretend titty". To be honest, I have had no qualms since the mastectomy. It is what it is. smile

growstuff Sat 28-May-22 13:50:06

soop

V3ra I shall most certainly do as you suggest. Many thanks. smile

growstuff It helps to share. My best wishes to you. flowers

Thank you soop. I must admit it's not a journey I really want to take, but I guess I'll just have to make the best of it. It helps to know what to expect.

Sweetpeasue Sat 28-May-22 13:44:21

I am very lucky not to have breast cancer Soop but wanted to offer my sympathy for your constant nightly loo trips to pass urine. Having Interstitial Cystitis for many years I had to go at least every hour too. It's exhausting for you and deeply frustrating, a constant torment. I'm so sorry. I knew of your prolapse bowel operation but didn't realise you had also had breast cancer. I'm so very sorry, you have had such a lot to bear. I'm sure you've checked already that there is no UTI. I hope you get these issues sorted soon, you need your sleep. Many good wishes for your complete recovery. X