Bev please don't give up. I had tried taxotere which didn't work as well as several ai's and I was too poorly with high calcium so they couldn't give me anything. When I was slightly better my onc said he would try vinorelbine as my liver was in a mess. He said that if if this didn't work he didn't know what to try. Guess what?. It worked! My liver was much better and my lung's and bones were stable. He also said that he could try other treatments now that I had responded to this. So there is a good chance this could work for you Bev. I have a feeling ( not sure) that this goes through the BBB.
Good luck Bev. Lots of love. Sheila. Xxx
I am so sorry but please do not give up hope, when you feel stronger consider going for a 2nd opinion - you have nothing to lose and lets pray that vinorlebine is the one that will work for you. You are in my thoughts, stay strong, easy to say I know. xx
What a sh*** Illness this is. I agree with the others , get a second opinion and although extremely difficult hang on in there. You are in my thoughts and prayers. I will be sending enormous positive vibes across the country.
Please take care
Thanks Porkie, Nicky and funny face. Second one over next one this morning. Don't feel too bad as yet. Hope this continues.
Good luck today Bev. Thinking of you. Lots of love everybody. Sheila xxx
Sheila, Glad you got started, so you can get this behind you. Hoping and praying for the best for you.
Bev, It's OK to be sad. You have had a difficult time since last summer. I'm praying the rads will knock the buggers for a loop while being kind to you. Then you can get started on vinorelbine. Saying prayers! Funnyface
Thank you all for your kind comments...so encouraged by them, you really keep me going ladies! i just hope something starts working for me soon, i so need a lucky break. No response from chemo since starting last july...,makes me think if I'll be the same with rads 😩 xxxxxxx
Why do we feel bad when we feel sad ? It's allowed , lt's part of being human. Have a lovely lunch . Sending lots of positive vibes. Marie
Morning Bev, you are allowed to be sad but I am sure when you start treatment you will feel better. I do hope the scan results go well so you can then start to look forward to going on your much awaited holiday. Enjoy your lunch today, we are all thinking of you.
Sheila, I am pleased that your treatment has started, I do hope that it continues to go well and that you get some amazng results. With much love to you both,xx
Hi Bev, I had my first wbr yesterday and all went okay. The bed you lie on is a bit uncomfortable as it is a sort of metal but they put a pillow under your knees and it makes a big difference. you are only on the table about 5 to 10 mins. It took a bit longer with the planning c.t.
Feel okay today. Had a nose bleed last night and a slight headache but apart from that OK so far. I feel better now that tx has started. Good luck Bev and enjoy your lunch. Good luck Bev. Lots of love. Sheila xxx
Hi Bev, hope your scans show stability too. I had vinorelbine as my last chemo and it worked well.I had finished the course and onc thought I needed a break from chemo as I was having low blood counts etc. But it was a good chemo for me. I might have to wait longer than 6 months before I can drive again. We shall see. 6 months seems too good to be true! It is up to dvla isn't it.
Anyway let us know how you get on won't you next week. I will be thinking of you.
Lot's of love Sheila. Xxx
Thanks for all your encouragement, it really made me feel much more confident.
Saw my onc today and he also made me feel confident in my prognosis. He didn't tell me I was going to live forever but he did say that if we can get these mets sorted and keep the rest of my cancer controlled I could still be looking at years. He said he had several patient who were 4& 5 years post wbr and were still doing fine!
He said the main SE was fatigue. Nausea can happen but not everyone gets it and if I do I just need to tell the staff and I will get some meds for this. I asked how long I would be unable to drive and it could be only 6months as I haven't had any seizures and not many symptoms. I am to see him in 2weeks which was already booked. Apparently, he requested eribulin for me the day before it was taken off the drug fund and it has gone to appeal. Hoping the faslodex works but next plan already in place if not.
As you say Chocolates, he is FAB. We even had a laugh! I think I will get a sticker for my car saying I LOVE MY ONC.! Tx starts next Monday so not long.
Bev, I hope you are feeling better now. I know it is early days since you were DX. It is 2 weeks for me and I am coming to terms with it now. Good luck with your treatment and remember what my onc said about people still doing fine after 5 years. And who know what new treatments will be available then.
Lots of love to everyone. Sheila. Xxx
Well had MRI on Mon. My onc rang me this evening about 5_45. He asked if it was a good time to ring and he wants to meet me tomorrow at the radiotherapy unit to plan treatment! He says there are quite a few tiny mets as well as the one causing my eye problem (these werent seem on ct) and because the rest of my cancer is under good control at the moment he wants to give me high dose of WBR in 10 sessions! Not what i wanted but I trust him and he will go through everything with me tomorrow as the phone isn't ideal for a consultation.
Hope you are OK. I've said before, tx has come a long way recently. We just have to keep strong.
Lots of love Sheila xxx
Bev, just adding my good wishes to everyone elses. Please keep in touch when you feel up to it, but take it easy and look after yourself. Many gentle hugs. Barton.x
Bev, just want to echo what everyone else has already said. Wishing you the best of luck with the next lot of treatment..its never easy facing yet another round but we're all with you. Hope the holiday comes off. I had just got around to thinking about a holiday abroad and then got dx with pilmonary embolism so no chance!!.
Thank you all so much. My planning for RT will be after next wednesday when I'm next seen in clinic by the whole team. Then the following week I'll have radio for 5 days...and will lose all my hair...who cares??
A baldie for my holiday. Onc is happy for us to have the holiday providing i am still this well and symptom free in june. He has given the ok to fly too.
Thats the bizarre thing...i feel so well at the moment. Thats what makes this all seem so unreal.
After i have had vinorelbine he is going to apply for funding for eribulin but not hopful as less than 6 people in 100 get the funding here in wales.
But my family have said they will fund it for me! I insisted that i pay at least half but at the moment my mum is insisted that she's going to pay it all! But I'll soon talk her out of that lol!
I am stilk awaiting the report from solicitor regarding my investigation and litigation with the health trust and have been promised that this week with the hope of some competition so that will pay for treatment too if forthcoming. Speak soon ladies...hope you are all well and enjoy the weekend!
Love bev xxx
Bev, You must be exhausted...so much to take in and sort through. We are hear to chat with if and when you need too. If they decide on vinorelbine, it was kind to me. Rest up and concentrate on you! Hugs and more prayers. Funnyface
Just want to say Bev that I am thinking about you. Don't despair, treatment is so much better now. Did onc say why you couldn't have stereotactic? My onc has put me forward for this but this was just on CT results. May change with MRI? I think the decision will depend on the neurologist in the end. Hope I get to hear something soon.
When does your tx start? I hope SE are minimal and you are soon on the mend.
Will be holding your hand when you are having your treatment. Lots of love Sheila. Xxx
Just to updatd you all. I have 4 lesions in the brain. One is 3cm...2 are 2.4cms and 1 is 1.7cm. One is on the right the others on left near back. But he said that wasnt the true size of the tumours as they also contain fluid which makes it look bigger.
Cyberknife/stereoractic radiotherapy out of the question so it'll be WBRT which will cause total hair loss and fatigue. Radiotherapy will be over 5 days but will be going next week for planning first. After that will resume chemo again but wont know which one till ive had results of my ct scan on friday. Results next wed.
Onc did say that theres also no guarantee that the radiotherapy will work because of the way this cancer is behaving...borderline triple neg. Plus the fact nothings worked up to now.
And if my scan this friday shows the chemo is not working again either then itll mean a change to Vinorelbine.
Also i have to inform DVLA as i wont be driving for at least a year.
On the plus side (if there is one..) he said providing my symptoms dont worsen by June then i could still possibly fly to Greece for 2 weeks. ..lots of ifs.
I wont post again for a while as I'm exhausted but thanks everyone for your support xx xx xxxxxx