Back on chemo

[lalie]

Hi cookie , sorry to hear how you feel. I have secondary's in bone and liver also thickening in the lung and abdomen , diagnosed in 2013. You are lucky that tablet form worked for you as it did not me. I then went to have taxol chemo last year and when that finished in September I started taking letrozole , which was fine for 7 months . Went to my onc for scan results and it showed it not being stable no more . I'm now on a new chemo erubilin on my 2 rd session . Not had a scan yet to see if it is working but my bloods show a reduction . The bit I worry about is when the chemo finishes aand I go on another hormone drug to keep it stable will it only be for a few months again and I have to start having chemo , which always seems to fall during the summer 😞 I just keep battling on and not going to give up . Most of my days I am very positive but I feel down when I'm tired and the sun is shinning and I do not have the energy to do things. This site is brill and gives me hope and inspiration , especially when you hear the success stories . Keep up the fight xxxxx

[amberstone]

Hello Allayne   Nice to hear from you.   I suppose it is a very difficult question to ask the onco. you not only have to deal with these testing things but you also have to look at the practicalities as well, and sometimes situations/questions like yours have to be dealt with. I suppose you were wondering all the time how to ask the questions. 

This might sound odd, but in a way I hope all your information from the Onc means that you are not eligable, but if your news is going that way you damn well should get it automatically not have to deal and stress about that as well.  Good luck to you all the way.   Not got anything planned for this weekend.

I will have to read up on Radiotherapy as being told I would need Chemo I read all I could about that and nothing else.  This whole thing fills your brain space doesnt it?    Talk anytime XX Maggie

[Cookie17]

Hi Maggie, well I had the meeting this morning and it was rather surreal talking about my prognosis. I am trying to see if I am eligible for an ill health lump sum from my work regarding my pension. Trouble is a proviso is that your life expectancy is less than a year. Not an easy thing to discuss but my Oncologist was really great in talking to us about things. It was the first time since I was diagnosed that the matter had been breached. Anyway, it was not as bad as I had thought. I stay on the new medication and chemo and go back in a month to check in. Have a good weekend and take good care. Allayne x

[Cookie17]

Dear Maggie

Thank you for letting me know what happened.  What you have mentioned has happend to a friend of ours, our best man actually, who has a stage IV tumour on the brain and they are not going to give him chemo as the effect percentage wise are not worth the effects he woud go through as a result of having the chemo. It was about 1% for him. I have to say I admire your new outlook to all this and well done you.  You have to do what is right for you and I am glad the Oncologist was easy to talk to. I hope your daughter is not too worried about what has been said and talked about with you. 

I have to admit I am a little nervous about tomorrow's meeting but whatever comes out, like you, is what it will be and I will deal with it with my lovely husband who has been my rock from day one.  I was wondering how you were doing and am so pleased to hear from you.  Have a good evening. Allayne x

[amberstone]

Hello Allayne what an unusual name?  Well here goes, Went to Cardiologist Tues and he was understanding and did all ECG/Echo/Bloods Results: my heart is as good as can be for procedures I have had, so thats good news.

Oncologist:  She was easy to talk to I asked her to be honest and simple Statistics without Chemo chances of it coming back are 4%   with Chemo 2-3%.  She felt that to put me through Chemo side effects and if I got an infection (the heart has to work harder to fight infection) her gut feeling was not to offer Chemo but it was my choice.  There is such a small benefit in having it or not- so we decided that I would not have it and take her advice.  If it comes back in breast would be mastectomy, if it comes elsewhere nothing only treatment and it takes its course!  I am dealing with it now better and as far as I am concerned its gone! and I am not going to worry that every little twinge means its back!  I came out of there with a huge cloud lifted I can deal with Rads start in couple weeks. Being triple negative and family history I mentioned BRCA1 faulty gene she will see if I qualify for testing, she doesnt think I will have the gene as history not mega strong but up to the people who decide on testing. Better to be safe than sorry as my Daughter had read about this and was worried.

God luck to you on Friday, I suppose its not nice information you are asking for but you cant dilly-dally about this can you??  please let me know I will think of you also. Maggie XX 

[Cookie17]

Dear Maggie

Good luck for your meetings today and tomorrow.  I will be thinking of you and know it wont be easy whatever is discussed or agreed.  If you have any questions, do ask them and force them to put things into English speak rather than medical if you dont understand.  We do at times so we know what is happening and how it affects me.

I do hope they sort things out for you in the best way and do let me know so we can have a winge.  I have a meeting with my Oncologist on Friday to discuss my prognosis as I am trying to get an "ill lump sum" from my pension scheme but I need to be dying within a year to qualify so need to know where I stand if at all as the sums involved are quite considerable.  Also discussing my new medication and how I am faring.  All good fun but life goes on.  Have a good day Maggie. Love Allayne (Cookei17)

[amberstone]

Thanks Cookie for your reply   Hopeyou are having a better day to day, thanks for your support also.  I am off to the Cardiologist today and then the Oncologist tomorrow and she has to decide if I can have Chemo or not.  I will keep intouch and if you want a moan find me, you wont scare me now I am getting used to it and realise we are all different.     Have a nice day to day if you can. X

[Cookie17]

Dear Maggie

i am so sorry to hear your news.  It must have been frightening. You are so kind with your words.  Its never easy to be told you have breast cancer, whatever stage it is. You are extremely brave to have undergone surgery 4 weeks ago and go on here and say how you feel.  Chemo and radiotherapy are never easy to take for anyone but we all respond differenty so dont get scared by what we write here.  We are all different.  There are so many ladies out there who are there to support you like me.  You have a right to winge and feel as you do.

Anytime you want to have a moan, let me know, I am here for you.  Cookie17

[Cookie17]

Thank you Lucy for your message and links. i will definitely take a look at them.

Cookie17

[Lucy_BCC]

Hi Cookie

I am sorry to read that you are having such a difficult time, along with the support here please feel free to call our helpliners for some further support and a listening ear, lines are open weekdays 9-5 and Sat 10-2 on 0808 800 6000

You may find it helps to post in this thread which is used by forum users in similar situations to you

http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/td-p/4...

You can access further secondary support from BCC via this link :

https://www.breastcancercare.org.uk/information-support/support-you/local-support/living-secondary-b...

Take care
Lucy BCC

[amberstone]

Hello Kookie17  just want to say I have just read your post and you make me feel so humble.  I was recently diagnosed 10th June Triple Negative Grade 3 Invasive Breast Cancer  surgery was 4 weeks ago and I am worried out of my mind as to what I have and how will I cope with Chemo/Rads?  You have made me think and stop whinging and get on with it "there are a lot of ladies worse off than me"  You are so strong/brave - you must be to keep going you are as strong as the other ladies because you are doing it!!   I want to wish you all the best in what you do and how you are feeling, please dont lose hope. I hope you have some family near you when you have a bad time?  Maggie X

[Cookie17]

Sadly the Oncologist informed me from my latest CT scan that the tumour in my liver had grown a cm and therefore he has decided yet again to change my medication to see if we can knock this tumour on the head.  I am lucky than most because its an oral chemo, unlike many of you out there taking the intravenous killer.  I was put on it last year but it was too aggressive for me and was killing my immune system. So they had to take me off and put me on Anastrazole then Emestatine.

I find the hot flushes terrible now and wake up with night sweats. I thought I had seen the last of these sweats but it seems not.  Along with feeling so tired all the time, I am also seeking new palliative pain control for the pain in my spine due to the bone cancer metasteses that I have as well. Having a primary breast cancer with secondary cancers of the spine liver and lungs has been a hard fight but I sometimes lose faith.  How do yo guys out there cope? I hate being negative but there are days I sometimes just want to curl up and pray for the aggro to go away.

Thank you for listening and I hope I have put this post in the right place.