Hi Ramade , thanks will let you know how it goes .Still haven’t had spinal tumour removed yet , as hoping it would remain stable .Still growing unfortunately, so guess it will have to be removed this year .Otherwise if I don’t have op , it would be risky the larger it gets ..Chat soon take care xx
Hi Ramade I’m ok pet scan Monday, so will know a bit more then .If ever you need to chat , day or night I’m here for you .Sending lots of love xxx
I'm really pulling for you here.......you’ve had a lot to cope with and it must so hard to deal with it all, when you feel that you look terrible.
sounds like that anxiety pill worked....what was it because I might well want one of those at some point.
hang on in there.......
So sorry to read this. Yes we are all in the same position even though we expect it is still such a shock.
Sending you lots of love.
Sending you huge hugs ramade. I do hope that you get a CT sooner than the one you've already got and your oncologist is able to help. A tough time for you and your family. Thank you for sharing though, it helps us all to support you and understand.
Sending you love and a hug ramade. From reading your posts it seems you have good family support, but wanted to say I’m thinking about you... Kate xx
Linda,hospice nurse came round and she can see the lumps ha ve grown and my face has palsied,I look terrible.
she said she’s getting an urgent appointment with the oncologist and seeing if they can bring forward the ct. she held my hand and said we might have to have a different kind of conversation next time. I knew what she meant_ radiotherapy and chemo have both failed.well I’m not someone who cries but I just put my head in my hands and shook. After a while she gave me an anxiety pill. I woke up 2 hours later and had to ask hubby what had happened. Reading this back I see it is an example of what we all have to face.
thankyou for hugs and kind words and helpful information.
love to all
Sorry. The first time to PM on this forum. I have wrongly sent the draft partial version.
Will try again. Please ignore the first PM.
hi Ramade, any advice/suggestion by the hospice nurse.
Nothing lose, I am using google translate to convert an article regarding the fatigue SE management from Chinese to English and then PM to you. The article was written by a radiation oncologist who had been trained in MD Anderson Integration and is now the radiation therapy director of a hospital. Maybe, you can take a look.
20 years you have been on this awful journey. You must have seen alot of new treatments come along.
I can understand what you are saying about stopping treatment. It must be awful for our loved ones seeing us suffering. I thought I would have longer between treatments like I did back in 2009. no IV until 2018. Tablet form chemo does not seem nowhere.near as bad Feel free to PM if you don't want to say on forum.
Oncologist used to say to quality of life is the most important.
Scan in March not to far away. You could decide then.
Hi Linda, my next ct is in March. I feel ashamed in a way that I am for the first time in 20 years thinking about stopping treatment. It’s the constant side effects,fatigue everything really. Tomorrow I have a hospice nurse coming to visit and I am going to talk it through with her. My hubby wants me to carry on and the rest of the family and I do understand them completely. Let’s see what she says.
take good care and I hope the gemcarbo works for you.
Sorry you are still suffering with fatigue. Have you mentioned it to your oncologist about what to expect.
Yes 11 years for me in August mets from start. I remember when I was told breast cancer and was told 5 years. Hubby was with me he was in shock. Then in the November before chemo started told bone mets as well.
In years to come there may be an injection that can be given to prevent people getting it the first place like the flu jab that would be good.
Do you know when your next scan is due?
Hi Linda, glad that you have no side effects so far and let’s hope it’s working. The fatigue from the head radiation is still awful after 8 weeks, but on the bright side this has meant I have done a lot of knitting for the baby grandchildren. Back on erubilin next week , they gave me 3 weeks off(1 cycle). I think we’ve both been going a long time, let’s hope someone comes up with a miraculous cure!
take care of yourself.
Thank you for asking. Only had 2 but seems to be going OK. Just hope it is working.
Hope you are doing OK. Have the side effects of the radiotherapy to your head settled down now.?
really sorry to hear that fingers crossed you get a little longer, and there are some treatments left.
I have not been on for a while as my lung mets have been stable for 2 years then in october found massive spread to my pelvis hip and spine plus nodules on my liver. Just finished docetaxel which has been hell but made no difference so now waiting to see if scan in 6 weeks shows any further advance if so trying TDM1... hate this disease. you take care
Hi Linda, I am so sorry you had such rubbish news!
Glad to hear that your kidneys are working well so you can start on your new treatment.
Hope it’s gentle but yet kicks the little uggers backsides, it’s a scary time and a real shocker when you get a result of progression!
I start on new treatment next week, fulvestrant and Ribociclib as they have now decided to pay my liver a visit!!
Take care, hugs Janette xx
You don't have to apologise you are going through so much yourself.
New treatment depended on kidney function which was fine. Started yesterday gemcitabine carboplaitin given every 2 weeks All happening so fast. Stable last scan September to now. Hard to believe things can change so quickly.
Can't remember now where your cancer is. Remember the lumps in your neck had changed receptor to triple negative.. We have been on this journey for so long.
Linda, I have only just seen your post. So sorry your scan results weren’t great. I hope they start you on a treatment straight away to knock those cells dead. Your sister as well, you poor thing. I’m sending you big hugs and thinking of you.
i am also sorry to hear your news and hope you get good kidney and liver results asap and have the treatment. I am new here but have enjoyed reading your posts, and hope you get some better news soon.
All the best
What a huge shock that must have been for you all. It's very difficult to del with such an unexpected death, there's nothing that has prepared you for it so there's so much more to deal with for the family left behind. I know this as my Dad was in good overall health but literally dropped down dead at the airport on his way back from a fortnight's holiday with my Mum. A real shock.
Regarding my sister she was fit and healthy then she got up in the middle of the night with a headache then collapsed with a brain annulisium.
Oh Linda, I’m so sorry to hear your results were so rubbish. You and I have been ticking along together on here for so long now so it’s a real shock to hear of the spread to the brain. I do hope that your kidney and liver function results mean you can get the treatment you need ASAP. Sorry also to hear about your sister last year, I had no idea.
Sending massive hugs.
I am truly sorry to hear that the news wasn’t good. You deserve a lot of support from all of us including me. I am going to keep everything crossed and sincerely wish that your liver and kidneys are ok for the new treatment.
Also, you have been through a lot recently particularly with the death of your sister and I send you my love and best wishes.
Sorry to hear you've had a bad scan result Lyndyloo. It's something we all dread, isn't it. I hope you find out about your liver and kidneys soon, as the waiting game is awful. And how dreadful to have lost your sister recently too. I hope you have good support around, and lots of hugs? Sending you a cyber hug for now. x x
We haven’t really “spoken” before although I’ve always read your posts since I joined just over four years ago, I just wanted to say I’m thinking about you, and really hope your liver and kidney tests are okay so you can go ahead with the treatment.
Sending hugs and very best wishes,
Went for CT scan results today. Not good news at all. Alot of spread to liver also 3 brain mets. I requested a brain scan as my younger sister suddenly died from a brain annulisium in November last year. There is a treatment I can try if liver and kidneys are OK.
Just thought I would let you ladies know as I been on forum for 10 years.
Take care everyone .