Side effects of Leterozole

Hi mounties

I'm sorry to hear about all the side effects you're having with the Leterozole tablets. It must be very unpleasant for you. I don't have any experience to draw on to help you with your question as I haven't taken them but I did notice that your post had gone unanswered.

Hopefully you'll have had your questions answered by your oncologist yesterday but, if not, you might like to join the secondary breast cancer group and re-post your question there. Clicking on the link I've created will take you to the group.

I'm also tagging  and GRANNY59 into my reply as they're the Community Champions who keep an eye on the secondary breast cancer group and they should be able to help with your questions.

Wishing you all the best 

x

Thank you. Good to know I'm not on my own. I hate getting upset in front of my husband and family.

Went to appt with oncologist on Monday and saw his registrar who was very short with me, didn't get any answers about treatment plans. I was just told to stop taking the leterozole if it was causing me problems. No alternatives. No reassurance. So I did as I was told and stopped.

I am also having injections 4 weekly of a horrible medication denosumab xgva which stings like crazy when it goes into arm. Anyone else had this injection?

I feel completely lost as to the future. I'm sure everyone feels like that.

Can anyone tell me what the timescale is when the cancer has spread to most of the bones in my body?

Thank you. Good to know I'm not on my own. I hate getting upset in front of my husband and family.

Went to appt with oncologist on Monday and saw his registrar who was very short with me, didn't get any answers about treatment plans. I was just told to stop taking the leterozole if it was causing me problems. No alternatives. No reassurance. So I did as I was told and stopped.

I am also having injections 4 weekly of a horrible medication denosumab xgva which stings like crazy when it goes into arm. Anyone else had this injection?

I feel completely lost as to the future. I'm sure everyone feels like that.

Can anyone tell me what the timescale is when the cancer has spread to most of the bones in my body?

Hi mounties

I'm sorry to hear that you didn't get on with the registrar you saw this week. However, it's not good that he didn't answer your questions. Could you contact your CNS and tell her what you wanted to know and what happened at your appointment?

I'm sorry that I can't help as I have no experience with any of the treatments you're having. Could I suggest that it might help you to join the secondary breast cancer group and re-post your question there. Clicking on the link I've created will take you to the group.

You could also post your questions in ask a nurse and one of the specialist cancer nurses will aim to respond within 2 working days.

Wishing you all the best

x

Referring to your denosumab are they giving you the little vial to warm up with your hands before they inject? If not ask them to, my chemo nurses give me  mine pro warm up for about 10 mins otherwise it stings like mad. Ask for this the next time... if it even says to remove it from fridge 15mins prior to using but if you are already doing this then sorry your feeling pain as I feel nothing. Sorry letrozole didn’t work for you it didn’t for me either, side effects were horrendous. I’m now on capecitabine and after two rocky starts I’m doing really well and feeling the best I’ve ever felt, somedays I question my illness and then others I’m like yeah ok I’ve still got it... I’m just waiting on an op called kyphoplasty to straighten my spine where my tumours have fractured... hope you get sorted soon 

much love Jo xx 

Thank you Jo. I will follow your advice with the denosumab when I go for my next injection on the 10th oh July. 

Can I ask when were you first diagnosed with secondaries?

I am a wimp with pain after going through 13 chemo 12 years ago and the accompanying sickness.

My diagnosis is still very recent and I am still feeling very scared about my unknown prognosis and time scales.

Have you asked those questions? 

Your not a wimp, your frightened and I would be too having been through the same thing myself in 2012 so don’t put yourself down, we are the bravest people we know so don’t forget that!! 

My secondaries were in my spine, 1 in my neck, 4 in my thoracic all of my lumbar all of my sacrum and a spot on my rib. 

My first response was to cry and my fear because this can’t be cured was palpable I was an emotional wreck, I was thinking about my boys, my granddaughter my partner, everyone I would leave behind. The thought that my boys would live more of their lives without me than they every had me in it  broke me into a million pieces... then I had a really big word with myself and thought ok game on and I have gone through the rest of this with a bloody big smile on my face, I have had ups and downs, two hospital stays, blood clots and pneumonia, if your ever taken to hospital and the doctors ask if you want to be revived in the event you stop breathing and would I like to sign a DNR tell them to piss off!! I wish someone had told me that they ask everyone who was quite poorly I nearly had heart failure... anyway me getting better and getting out showed me I made the right decision and said no. 

My treatment now is capecitabine and this was the tricky start one... but now I feel bloody marvellous I’m out with my grandchildren and having them stay over.. my spine has fractured because of the tumours but I’m having kyphoplasty to straighten it again and to be honest they have just rang to say they want me to go in on Monday to have it done!!! I’m just waiting to find out if that is happening as I said no as I’d just started my chemo but my oncologist has just said to stop and have the op so I’ve rang James cook back and left a message so I’m just waiting to hear... I feel so nervous haha 

anyway back to you... you will go through a period of mourning and then depending on what kind of person you are depends on what the future holds for you but I’ll not let this define me.. 

always here for a chat, much love Jo xx 

Hi Jo. Thank you for your encouragement and good advice.

I've got tonsillitis at present so am feeling below floor level with my emotions

 Have you ever had a bone biopsy? I'm waiting to get me appt through to have one to determine HER2 status.

I had chemo in 2007 after mastectomy and found it very difficult to get through

I've heard its kinder now . My heads not straight yet. But I do hope you get your Op Monday  and wish you lots of love gr a speedy recovery and return home.

Whereabouts in the country are you? I'm in Leicestershire.

Please keep in touch xx

I'm currently on lethozole and been having horrible sore mouth my lips all white cracked plus my appitite been all over plus I'm getting joint and back pain however which is tolerable as in joint and back pain but I often have to have oral morphine at niggt though bresk through oain currently in lot atm but so I have fractured vertbrae from the csncer. Was supposed have appointment today about potentional more radiotherapy too on my skull and neck which is also painful but as was supposed be squeezed in I waited around half elven till half two to find out ward clerk didn't take my notes to treatment room so they didn't see md

I'm currently waiting to start the drug for the bones which I'm nervous for if I'm honest 

Xxx

Hey, you sound like your all over the place at the minute, you have a lot going on and a lot to think about, I can’t believe that you had to wait all that time for nothing! It’s disgraceful that happened to you. I was given letrozole and I had severe leg pain and I had to stop taking them in the end, after that I was given palbociclib which caused a few problems but after a few rounds I was doing well but after a scan she wasn’t sure that it was working and rather be safe than sorry I was switched to capecitabine and I had two rocky rounds, to be honest I think this is quite the norm till your body accepts it and now I’m doing great, I’ve just had kyphoplasty to my spine as my vertebrae’s had collapsed due to the tumours so the op was done and I was home the same day and I feel fantastic! 

You will start to feel ok, and try and write or take someone with you to oncology meetings so you know what’s been said. I suffered with dry split lips and my mouth was sore but turned out to be oral thrush which was a side effect off the chemo so they can give you something for that and I just used gallons of Vaseline on my lips and eventually they got better, let me know what drug they put you on and maybe I can help with any questions. Try not to worry and I know it’s easy to say but we have all been there. There are mountains to climb and we climb them not knowing what’s on the other side but just try to be positive it really does help 

big hug, Jo xx