My face to face appointment Friday : Hi Ladies, I... - My Ovacome

My Ovacome

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My face to face appointment Friday

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Hi Ladies, I’m going to try posting this again.

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

73 Replies

So sorry to hear this Angela. Let’s hope the letrozole can keep things at bay whilst you wait to speak with Prof Jayson.

I really do think you’re going the best thing getting a second opinion, your onc sounds like he has given up and you don’t need that!

Take care and keep positive xx

Thank you for caring. Angel x

Dear AngelaYour post arrived in my inbox as normal. I'd seen your previous post but wasn't sure if you had seen the replies.

I was so sorry to hear about your face to face....I'd really hoped you'd had some positive news.

Sorry too to hear you're feeling so unwell today .....I'm sure all the upset will have effected you. I hope tomorrow finds you stronger.

I'm glad at least you have been able to start the Letrozole straight away and hope you respond really well to it.

Love

Liz xxx

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

Hi Angela

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

I’ve got everything crossed Lindy. It’s been a difficult few days as you’ve all experienced.

Angela x

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 .

Good luck xxx

So good to hear from a Manchester Lady. Angela x

So sorry for your news but good that you are seeing Prof Jayson. How long do you have to wait? Always tough waiting over the weekend. Thinking if you.

The Professor will have received the letter from the oncologist by now. Just living on tenter hooks. Angela x

I know that feeling- I am with you crossing all fingers and toes.

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,

Sashay

So sorry to hear this lovely.I really hope you get better news soon Angela.

Take good care please xxx

Thank you Angela x

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!

Thank you Delia Angela x

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.

🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

You need all the hugs we can send!

Iris ❤️

Thanks for all the hugs Iris. Prof Jayson does sound special. Angela x

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 think Professor Jason is a world wide trials specialist and may take more ‘risks’ than other oncologists. Angela x

Thanks Angela, he sounds like a wonderful card to have up your sleeve! ❤️

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

Thank you Lesley Angela x

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

Have you tried using the laptop to add the photo? I put a photo on my profile the other day and it was really easy. Good luck with Prof J. Sue xx

I have tried Sue but I don’t have any recent photos on my lap top. I’ll have get my daughter to help me. Angela x

Okay, just thought it might be easier. All the best Sue xx

I think you’re right Sue. 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.

Love from Angela x

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

Thank you for that Jane, much appreciated. I’m pinning my hopes on him and the Letrozole. Angela x

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

Thank you Gwen - just wishing and hoping for a result Angela x

Oh dear. So truly sorry. Letrozole may help and maybe a trial? Praying for you hugs from paris

Thank you Ruebacelle hoping for a miracle but aren’t we all! Angela x

Hi Angela

I will pray that Prof Jayson can give you the options you deserve

Don’t loose hope

Rest today and do something you enjoy to take your mind off of all of it

Keep us posted

Sending hugs and positive energy your way

Margaret

Thank you Margaret

Angela x

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.

Much love xx

Thank you so much. I certainly will let you know what happens next Angela x

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

Thank you Donna. The Doctors I deal with are wonderful. I’m just hoping the Prof will be even more wonderful. Fingers crossed 🤞

Angel x

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

I thinks trials are the only hope Kath. We don’t have any trials suitable in Sheffield at the moment. Thank you

Angela x

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

Music to my ears Di. Thank you. What are you on now ? Angela x

Hi Angela. I have everything crossed that the Letrozole works and that Prof J can find something for you. I do hope yr feeling better today x Kathy x

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

Love Angela x

Got everything crossed for you

Thank you Love Angela x

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

So sorry Melanie I’ve asked for a second opinion. Maybe you should do the same. I wish all the best Love from Angela xx

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 ,

D

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

Love Angela xx

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 .

kind regards, D

Thank you Dollie Love Angela x

How are you doing today? x

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.

Love from Angela x

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

💙❤️💙

Thank you dear Jane, I think of you and your lovely mum so often. Lots of love

Angela 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.

Lots of love

Liz xxx

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.

Love Angela x

Dear Angela. I'm so glad you have the appointments organised at last and really hope you get some positive news next week.

Take care.

Love from

Liz xx

Thank you Liz, Love Angela x

I really wish I could help with your tummy but I can't think of anything you aren't already doing. Maybe the nurse specialist could help?Liz. Xxx

I rang the CSN tonight and left her a message. She’ll probably ring tomorrow Love Angela x

I've rung them a couple of times in the past and they were really good. Fingers crossed they can help.Liz xxx

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