Hi Ladies - thank you to all who have responded to me and making me feel welcome.
Thank you for the link to PALs and it is certainly something I will be looking into, and I'm gong to ring my Onc's office to ask for an appointment to be put in the diary ASAP.
I have my lung biopsy tomorrow but was a bit concerned today when the nurse phoned me to discuss my procedure tomorrow. He asked if I was ok to have my blood pressure taken from my leg, when I asked why he said 'as we can't use your arms' - I had to explained that it was only my left arm that couldn't be used, he said 'oh good we can put the canula in the right arm then' - i'm so glad that is is only a local they are doing and I can see what they are doing to me.
Hope everyone is enjoying the lovely sunshine that we are having.
Take care all
Hi Belinda, true, the consent form I signed to have rads did say sickness and diarrhoea, although the word sickness, the doc put brackets round as he thought it wasn't 100% relevant. So much going on, not sure what casues what lol. Tine x
Hope Helens new onc is is much better than las last one. Hopefully she will start to feel better give her my love and massive hugs! Xxxx
A big welcome to Pippie.xxx
Thank you chocolates for keeping us up to date. Xxx
Hello lovely ladies, hope you all had a good Easter. Have eaten far too many hot cross bunnies, sorry buns and chocolate.
Helen hope you had a comfortable night, Bev thinking of you.
Pippie,I'm sorry to say that your expeirnce doesn't appear unusual. I have had treatment and operations cancelled the day before, after being told that they were absolutely essential. It is difficult to handle when you are feeling so vulnerable. Also phone calls not being returned, I just won't go there. Hang on in there , keep asking the questions . Write them down so you don't forget what you want to ask. Good luck.
Janette, I too am going for some help with the big C this week. So good luck with your appointment.
To eveyone having a difficult time be gentle with yourself.
Hi Ladies - I hope you don't mind me joining you, I have been in the wings for a fortnight reading your posts, plucking up courage to join in.
I was orignally diagnosed with BC primary in March 2012, then diagnosed with mets to my spine, ribs and lungs at the end of January this year. So far, I don't know a lot about my diagnoisis due to being messed around with appointments etc. I was told originally that I was to have a lung biopsy, this was then changed to a bone biopsy to my spine, this was cancelled the night before I was due to have it - due to a problem with my blood, to which I still don't know the out come of the blood test done on the 11th March nor my lung function test done in February. I rang my BCN and asked her to have this discussed the MDT meeting which it was on the 25th March - I am now booked in to have a lung biopsy on the 8th April. I have had 3 treatment planning appointments with my Onc that have had to be cancelled, as I haven't had a biopsy on my lung yet, and there isn't one booked as yet.
Please can you tell me if I am alone in being left hanging around like this, as I feel I have been given information that I can't do anything with, and nobody to discuss it with (I haven't told many people and don't want to until I know what I am dealing with).
I hope you all have had a lovely easter, and eaten too may eggs.
Chocolates, thank you for keeping us up to date about Helen, and sorry to hear she is still bad. Hoping with everyone else that she improves today. Bev, thinking of you too, and all other ladies. So sorry I can't remember everyones names, and forgive me if I don't mention your name, but I am still thinking of you all and wishing you all the best. Gentle cyber hugs to all who can bear them, and cyber-sitting with Helen for a little while (keeping very quiet so she can sleep and repair!). Hugs, Barton.x
Lemon drizzle thank you. I hope the fatigue starts to ease now.
Nicky, I was on 4mg am and now on 2mg for one week then stop. Hope your scan goes well.
Julie thank you. Yes the fatigue is the worse.
Belinda, hope you're feeling better after your transfusion. My daughter will be round shortly and will spoil me I'm sure.
Funny face, thank you. Hoping by next I will feel much less fatigue.
Chocolates looking forward to feeling better.meanwhile eating well and enjoying food..
Lynn, thank you for your good wishes hope you're doing okay with treatment.
Jeanette hope they sort you at the Beachwood. It is really important. To have the right care.
Bev, hope you are feeling much better. My onc says that he has several patients 4to 5 years post wbr who are still doing well.
Hope I haven't missed anybody out. Wishing you a a very happy and trouble free Easter.. Hope I don't lose this post!
Lots of love to each and every one of you xxxxxx
Hope Helen soon feels much better chocolates. Thinking about her and wishing her all the best for a speedy recovery. All my love and hugs. Sheila xx
Very best wishes to Helen; hope they manage to get a handle on what is happening very soon.
Bev, thinking of you too; so sorry you had such a frightening experience - at least they are getting moving soon with the rads and I hope that they are manageable and effective, and that you can then try the next chemo. We all have such different responses to these treatments that I like to think that while there are options left there is always hope for improvement.
To Faraway and 3network3, I've just started Fulvestrant recently, along with a trial drug (something similar to everolimus). Had some nausea for a few days after the first dose but not enough to need anti-emetics. Nothing noticeable after the second dose (apart from minor discomfort at the injection sites). So will be interested to see what happens next week with the 3rd dose. Not sure if I'll actually be on it for very long because of the constraints of the trial - but my hospital does not pay for Fulvestrant normally (and neither does my second opinion hospital), so the only way to try it was on a trial and it seemed like it was worht a try as I've used up the other main hormonal treatments. Have you noticed any other side effects?
Faraway ... I'm in a similar situation as you, I'm 45 and had BC in Nov 2011 and was diagnosed with bone mets five weeks ago. I'm also on Faslodex now (was on Tamoxifen, but they took my ovaries out last year) and so I was on Letrozole. It's not that you can't try aromatase inhibitors if Faslodex shouldn't work, it' just that they might also not be effective. But like with everything else in cancer treatment, it is a matter of trial
I suffer from terrible sickness after the Faslodex, will have to ask for something against it next time. What SE's do you suffer from?
Love from Tine x