Hi Janette, add my angry eyes to the list. Waiting is a nightmare!
Love Sheila. Xxx
Belinda, So glad you got a port! Funnyface
Oh my goodness, what lovely supportive new friends. Thank you so much. Today has seemed a bit brighter with the sun shining and all of you.
Sheila and Marie, just want to re-iterate what everyone else has already said...this is a very rocky road with lots of ups and downs....sometimes hard to see a way through but we all seem to eventually.
I have just had it confirmed that i now have a pulmonary embloism to add to my problems. m now on daily injections and am terrified that this means my mets have spread. Have a pet scan in 2 weeks and then the agonising wait.......
At least the sun is shining today!! xx
Thanks Tournesol, I hope all goes well with the trial. I believe they really look after you when you are on these. Good luck.
Lots of love Sheila. Xx
Hi Marie, please don't feel guilty! We are all the same. Sometimes we can forget what is happening and then it comes back to haunt us and we feel so miserable! As Bev says it really does get easier as time goes on and there are some excellent treatments out there. Don't be afraid to be your own advocate and if you have any concerns at all see your onc.
Take care and come on here as often as you need to.
Lots of love Sheila. Xx
hello, hope everyone is having as good a weekend as possible. Sheila, I was sorry to hear your recent news but your onc sounds very good and from what I've read the treatment can be very effective.
I found out last week that I have a place on a clinical trial and will be starting next week. Feeling nervous about side effects but will be glad to get back on treatment.
Thanks again everyone. Hoping I get MRI next week and then treatment plan. It would be great if all was sorted by middle of April. I have read some inspiring stories and these help me to keep positive. My daughter found one where a lady has brain mets and these have been kept stable for 7 years with faslodex which is what I am on at the moment. If only treatment worked as well for everybody.Nicky, it is pants! I do have a lot of faith in my onc though. He got me through a bad patch last summer I'm sure he will do his best to get the best treatment for me now.
Dawn, thank you. I'm glad the kadcyla is working and giving you some relief from pain.
Helen, hope you are coping with the chemo and that your pain is easier.
Have a lovely weekend everyone. I think today is supposed to be the best weather wise so make the most of it!
Lots of love Sheila. Xx
I am very new to this , so sorry if this is very muddled.I was diagnosed with bone mets 2013 . I am on Tamoxifen , bone injections and have had raiotherapy , However , it feels like it has just really hit me. I cry most days, and feel guilty for being like this, Is this mormal ?
adding my thoughts & hugs Sheila as you start out on a new treatment for this latest problem. It was interesting how many commented on their runny eyes during treatments. I used to find mine ran a bit more over the years on herceptin but more recently on Kadcyla they tend to stream at times like leaky taps! but on re-reading your post I think you were talking of one eye so your onc was really on the ball picking up something other than just a side effect. So here's hoping his quickness - and yours on reporting it will mean a really good response to whichever treatment they decide on.
I seem to be getting on ok with Kadcyla - it will be my 8th treatment next week. I don't seem to get any side effects other than runny eyes & nose. I also seem to get many days now when I don't need to top up my breakthrough meds and last week at my pump refill hospital visit I asked if they would reduce the morphine in the pump to see how I would manage. (I have morphine/bupivacaine & clonidine in the mix) 10 days on and it seems o.k. I had been getting really bad breakthru pain in my thigh and that has stopped but I still get quite a few of the nerve type sensations which although not painful can be unpleasant.
Helen I am so glad that someone is at last taking your pain problems seriously. It is so hard living with it day in day out. I hope linking up with macmillan nurse will help to get you proper management of your pain. It took me a long time and although it isn't perfect by any means it is better. Keep on keeping on!! they need to experiment to find what is going to work for you.
Belinda I hope your port is settling in 🙂 and you get to appreciate the benefits of these great little gadgets lol. If you find it is painful when accessed do ask for numbing cream to use each time. I find mine feels nothing probably because it is sited quite high up with only a thin layer of skin over it.
Congratulations to all of you who keep this thread going. It is such a amazing resource of information that we all share and just so supportive and though not a frequent poster I do try to keep up with all the posts.
Dear Sheila, so sorry to hear your recent news. I can't really add anything to what the others have said - I just want to add my cyber support to you along with everyone elses, and to let you know I am thinking of you. Wishing you all the best. Hugs, Barton.x
Thank you to all of you for your good wishes and HUGS. They cheered me up a lot!
I am feeling more positive today and if I can have the stereotactic treatment hopefully it will not be long before things are sorted. Apparently it takes 2weeks to plan treatment but I think the it is only a couple of days to do the radiotherapy.
As usual I have been doing research into this and there is some positive information out there.
Hope everyone else is OK and that you all have a lovely weekend.
Spring summer, I hope your treatment goes well.
Lots of love Sheila. Xxx
wishing you all the best as well. My thoughts are with you during this scary time but my lovely I am sure your Onc will sort out this out for you- just another hurdle to have to get across.
What does everyone think about the new lung cancer trial - mixing stem cells with gene theraphy- sounds promising doesn't it for ways forward with mets. Treatments are coming on now in so many different ways - i am on a biological (?) treatment now. Hasn't started working yet as will take a few weeks. A bit scary too as I am getting worse before it gets better and my breathing is not good!
I'll let you know how it all goes though. Have bought a vanload of cut daffodils and they are now throughout my flat and look lovely. Really cheers me up the smell and colour
Sorry to hear this Sheila - your team sound on the ball though. I hope it goes smoothly for you and is successful. In the meantime will be thinking of you and sending positive thoughts.
Shelia, sorry to hear your rotten news, at least your Onc is on it early and hopefully they can get you started on the treatment soon, stay strong Shelia (easy for me to say) your made of strong stuff girl 🙂
Sending you a HUGE hug Janette xxxxxxxxxxxxxxx
Not good news I'm afraid. Have got a lesion at the base of my brain and a couple at the side. Onc is booking me for an urgent MRI and then if possible I will be having stereotactic radiotherapy. If neuro specialist thinks this will not be possible, I will have to have wbr but hopefully stereotactic will be the treatment. The lesions are very small and there is no swelling so he thinks treatment should be successful. He said most patients don't find out until the lesions have progressed more but my eye symptoms warned him early. He is certainly on the ball so can't fault him.
So feeling a bit down at the moment but hopefully scan will be soon and then on with treatment. He doesn't seem too worried. I asked though what if treatment doesn't work and he said that is when it becomes life threatening. At the moment it seems stable.
Will let you know what happens next.
Lots of love Sheila. Xx