I had a disastrous appointment with the oncologist yesterday. I went through the whole treatment menu to no avail. The disease has spread to places I didn’t know I had so I appreciate that there is nothing left for me only Letrozole which I took last night. I’m pinning my hopes on Prof Jayson finding something for me but not very confident. I feel really ill today and can’t eat. Maybe I’ll feel better tomorrow.
Thank you all so much for your care and concern
Love from Angela x
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I’m sure all the worry and stress is making you feel ill Angela. Try to get a good sleep - easier said than done I know- and hopefully you’ll feel better able to deal with this tomorrow. When will you hear from Prof Jayson? We’ve all got everything crossed that he’ll come up with some ideas for future treatment. Xxxxx
Hi Maria, I’ve no idea when I’ll hear from the Prof but I’m worried about his reply of course. He will have received the letter from my oncologist by now. Angela x
Sending hugs…I hate it when you get bad news on a Friday and have to stew all weekend! I hear such good things about Prof. Jayston, hang in there and see what he says xx
Angela, as per my previous reply which you may not be able to see I am so very sorry to read that you have no options other than letrozole. I am hoping that Prof J can come up with something. My thoughts are with you xxx
Sorry to hear this Angela . When do you see the Professor.He is my oncologist,he is so easy to talk to ,and such a kind man . I do hope that he can offer you something.he won’t give up on you .
Hi,Angela. I have seen that you were having some trouble posting. I have been thinking of you and hoping you were doing okay. I’m sorry to hear that your visit with your oncologist was not a positive one. I hope and pray that Prof Jayston has a good path forward for you!Best wishes from Louisiana,
Oh Angela. I’m so sorry. I hope you’re feeling I’ll just because you’re upset. I’m really hoping Professor Jayson will have options for you. Sending hugs!
Hello Angela,I so hope the Prof can give you some good news. I don’t know about your new drug but I hope it works for you, or that something new will come out of your meeting with Manchesterlady’s professor, he sounds special 🤞🤞
All I can do is add my hugs with the others so you’ve got those to support you.
Hi Angela,It's such a tough journey and each time we hope for good news from the onc and it's gut wrenching when the news is bad.
Hearing about prof Jayson makes me wish I was living in England at the moment. But I don't understand how he seems to be able to offer treatment that other oncs don't? I mean, why don't they all have access to the same tool box?
Anyway, I hope he has a better answer for you. Xxx
I am so sorry to hear that you have had a disappointing consultatation - absolutely devastating for you. Keeping everything crossed that the latrozole works for you and that Prof Jayson can come up with an alternative treatment for you. Xx
Hi Angela, I believe you use your phone to access healthunlocked, I normally use my laptop. Do you have a laptop at home you can try and use. All the very best with Prof J and I hope the Letrozole works. Big bear hugs Sue xx
Yes Sue I have a laptop. Things are almost back on track with Healthunlocked, except I cannot put a phot on my profile, which I feel is important. Angela x
Hi Angela - So sorry you are feeling poorly. I hope you can get some nourishment into you to keep up your strength, whatever you fancy. I've found letrozole helpful but it tends to leave me somewhat achy. A warm shower can be helpful to soothe the joints. Hope you are able to get your consult with Prof J soon! All the best! Deb in Colorado
Good to hear you’re coping with Letrozole Deb. If not perfect - is it working for you? How long have you been on Letrozole? This is only my 3rd day and not feeling 100%. I’m hoping this will pass as time goes on. Angela x
I've been on it for about 8 months now. I'll know a little more about its efficacy for me by Friday - I have a PET scan Wednesday and see my oncologist on Thurs to review results and strategize accordingly. When I first started it, I was told it would take some time for side effects to manifest, and then they might abate somewhat at about the 3 month mark. I didn't really get the abatement as far as the achy joints (unfortunately), and I plan to bring this up at my visit Thurs and see if my oncologist thinks I could try a different drug that has a similar action and see if I tolerate it better. She suggested that might be a possibility depending on how things went. I do hope you get feeling better soon! Deb in Colorado
Thank you for getting back to me Deb. I haven’t got the achy joints yet but I don’t feel particularly well in the afternoons and evenings. I have only had 3 tablets up to now so I don’t know if this is the cancer or the tablet. My appetite isn’t very good either but I’m hoping all these things will improve eventually. Good look with your scan and will you please let me know got you get on.
I’m so sorry you’ve had this news Angela, I hope the letrozole holds things while the wonderful Prof tries to find a plan for you. He’s an amazing consultant who has a truly exceptional team working with him at the Christie which is a centre of excellence and which undertakes world class research. He’s so approachable, really easy to talk with and always answers questions in terms we ordinary people can readily understand, you’re in the best hands possible IMO. Take care lovely lady ❤️Xx Jane
Hi Angela, Sorry to hear your news. Prof. Jayson was my oncologist and has so much experience - perhaps an option (hopefully amongst others) may be a clinical trial -please ask. Good Luck and Best Wishes Gwen Xx
Oh I am really sorry to hear this. Like everyone else I hope you get some help from your Prof. My thoughts are with you and I know you will let us know what he says.
So sorry about your troubling news. I hope that your Prof will help you in some way. Sorry that you aren’t feeling well today. This disease is a physical and a mental strain on us. I live in the U.S., so I don’t know about the drs. over there. Sending a hug and will keep you in my thoughts and prayers. Donna xx
Hi Angela I have everything crossed for that all goes well with you when you see Prof Jason. I have seen him a couple of times as I am at The Christie. He is lovely to talk to and I'm sure he will have something for you. He also runs a lot of trials you might be suitable for one of those. Anyway wishing you all the best and let us know how you go on. Kath xx
Sorry you had such a disappointment at your clinic, & hope Professor Jayson can help. In the meantime, if Letrozole can slow things down for you, it's better at the moment than no treatment at all. It kept my oc stable for 2 years. Di
Thank you Kathy, I have only had 3 tablets up to now and don’t know if it’s the tablet or the. cancer making me feel unwell. I think about you when I hope for a trial as my oncologist worries that trials can be very dangerous and there to help future cancer patients maybe not me. I’m going to have to take that risk if there’s nothing else left for me. I think about dear Laura, nothing helped her in the end. I’m hoping for a phase 2 or 3 trial but I suspect that’s what everyone would wish for. I hope you’re still keeping well. You’re phenomenal
that's so sad to hear that and I today feel the same as you reading that, I also am on letrozole but it's not working for me and my markers have shot up dramatically in a such a short space of time, I don't know if there is anything left we can try, I really hope they can find something that will still give us more time.. best of luck to you
Hi Angela, I hope you are feeling better and I hope you got some good news from the oncologist regarding further treatment options . Take care and best wishes ,
Good morning Dollie, no more good news from my oncologist only Letrozole to hopefully hold back the cancer. I had a bad fall in the bedroom 2 days ago which has thrown a spanner in the works and naturally caused some pain. Thank you for caring
Hi Angela, I’m really sorry to hear you had a fall. I’m sure you got a terrible shock . Hopefully the letroxole will work for you. Im not familiar with that drug , is it used for hormone sensitive subtypes of ovarian cancer? I’ll keep you in my prayers for a good outcome. Stay strong , i know it’s not easy .
Not too good at the moment Sticky. I seem to have tummy ache constantly. The doctor suggested Tramadol , which scared me stiff. I’m taking Paracetamol about 4 times a day but it doesn’t help. I haven’t heard from Professor Jayson at The Christie. I don’t think my tummy ache is from Letrozole as it started before I took it. I’m not eating much and trying to eat healthily. I’ve not had anything sweet for over a week now, only tinned pro ones. Sorry to be miserable. I hope you’re still keeping. Please let me know.
Don't worry about eating healthily, just have whatever you fancy. I hope you hear from The Christie today and keep on with the Letrezole. Sending you a big get well hug, lots of love, sticky3006 xx
Hello dear Angela Really sorry to hear about your tummy ache and your fall. I can understand you not wanting the Tramadol. Can your gp suggest anything else? .....continual pain can be so depressing.
Keep thinking about you and hope you hear back from the Prof very soon.
Good afternoon Liz, my tummy problems seem to accumulate over the day. I force myself to eat very small meals but by my evening meal I’m absolutely stuffed and consequently feel even worse. My only consolation is reaching for as many different laxatives as I dare to take and pray for some relief in the mornings. Tramadol will be put on hold as a last resort. I heard yesterday from Professor Jayson and a liver and pancreatic surgeon in Sheffield. I have an appointment with both of them next week so fingers crossed one of them will have an answer for me.
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