Hi my lovely ladies it's been a while first I would like to apologist for not replying to any of your reply's, it's been 6 weeks and the shingles i had on my face which affected my eye is now just starting to feel better.the last 6 weeks has taken up all my attention away from my cancer,so this week back to my oncologist to see where i am with treatment,my 125 is up t0 1000 and it seems that the chemo is not working ,I've had a lot of chemo in the last 4 years, my oncologist said that there will be no more chemo. my last scan show stable results in original cancer but the spot on my adrenal gland had enlarged.
what are my options she has given me a course of Anastrozole and in 6 weeks I will have a blood test ,I did ask if she felt that was a good option, as i understand it pro inhibitors are given when your 125 is down she said a 30% chance. if not she has recommending a trial drug called Prexasertib.
Has any one had good results from Anastrozole or heard of Prexasertib
I'm sending my best wish to you all love and hugs Lorraine xx
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lorraine71-Australia
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Hi Lorraine. Lovely to hear from you. I was thinking about you yesterday and wondered how you were. My shingles hasn't budged a bit. Been on the tablets over a month now. Dr Google says 3 to 5 weeks so what's going on? So sorry to hear about the non-working chemo. Same here. We're walking the same path at the moment. Haven't heard of either of the drugs you mention but I don't research much into it. I hope you get some good results on either one. I started hycamtin last week. No side effects apart from tiredness but hair may come out. Don't know if I'll get this week's dose as bloods down. Have test today. It's a right old game. Sounds like you have a good oncologist on your side.
I hope your shingles hasn't damaged your eyes. It's not good getting it near your eyes I'm told. Get better soon. Love and hugs from a sweltering France. So hot here. 38 yesterday. More of the same today. xxxx
HI kryssy, Sorry love to hear you have singles also it a horrible thing, I'm in my 6th week and the nerve pain that went into my eye has now stop, when it came I would scream and cry, like a big sook, I did not want to leave the house and go out into the public encase I got a attack.
I did read keep the area cool so try having cold showers or better still a cold bath might help you ,being so hot over there this could be easy.
I've been spraying my rash with Avene thermal spray water I keep it in the fridge and spray all day I think this cools the rash and has helped to dry it up.
My eye seams to be ok I've been going to a eye specialist.
As you said it's a right old game, so here hoping we are both in it for quite a while..Take care my friend Lorraine xx
That's not good Lorraine, but does sound like you have a plan, so keeping my fingers crossed for you on the new drug. No experience with either of the ones you mentioned, but hopefully someone will have some thoughts.
Glad to hear the shingles is finally clearing up, painful horrid stuff.
HI Dawn, Thank you for best wishes, I've started the Anastrozole one tablet a day I go back to see my oncologist in 5 weeks with a blood test, also make up my mind if I will go on the test.I've been with my oncologist for 4 years and do truest her.but the news that she feels I'm running out of opinions makes me want to have a second opinion, just to give me peace of mind.Take care Dawn hope the trial keeps going in the right direction Lorraine xx
Hi, Thank you for your reply, my shingles is a lot better it is painful I wish I had knowen about the vaccination, I think it's a good idea we all talk to our Gp or oncologist as my immune system had got so low that is why it happen.
I'm glad your trial is giving you good results, can you ask about having a port in?
I've had mine now for over 3 years with no problems, I forget it's there you can keep working it's not noticeable at all.
Take care and thank you for your wishes will keep in touch ..Lorraine xx
Wasn’t expecting to hear this from you 😕 I believe Anastrozole is a hormone blocker (like letrozole, tamoxifen etc), and quite a few of our community have given those a try with some positive results, or a period of stability.
Just looked up the trial drug, and it seems to be having a bit of a ripple. It’s on Phase 2 so they must think there’s enough promise to it otherwise they wouldn’t invest the money.
Let us know what you decide to do. Sending you a big hug, Vicki xx
HI Vicki,I've started the Anastrozole for 6 weeks then go back with a new blood test also gives me time to see if I want the trial, it seems as if I have little choice.
MY oncologist has been good over the last 4 years I think I thought I would just keep fighting but she told me no more chemo, I have had a lot in the 4 years.
I do trust her but would like a second opinion.
I hope your trial gives you good results take care will keep in touch Lorraine xx
Thank you love,Shingles is a lot better now back to my treatments,I've started the Anastrozole tablet for 6 weeks , in this time make up my mind about the trial.
Hope all is well with you take care also Lorraine xx
HI Jo,Thank you for the love and hugs ,shingles a lot better now concentrate on my treatments, I know you have had a bumpy time lately I hope it's a lo better take care Lorraine.. love and hugs back to you xx💙💙
As Yoshbosh has said the Prexasertib is on a Phase 2 trial so that is always encouraging. It seems to be doing trials for both BRCA mutated and wild type BRCA so directed at those without the mutation. Also participants included that have had prior PARP treatment. I have found 2 trials for it.
HI Roni, Thank you for the information, I'm on Anastroxole tablet for 6 weeks I don't feel confident in them, I go back with a new blood test in that time i can make up my mined about the trial, it seems i don't have much choice but to give the trial a go.
Will keep in touch ..Take care of yourself Lorraine xx💙💙
So glad you're shingles is improving, Lorraine. So sorry that the Chemo hasn't appeared to work, though. Let's hope the new tumour grows slowly and the others stay stable for a good while yet. Sorry, I know nothing about Anastrazole, I'm afraid, but wishing you good luck with it.
HI Solange, Thank you for your best wishes,I can take my courage from you 11 years and you are still not giving up,I hope we both continue for quite a while yet..
HI Linda, Thank you so much for taking the time to reply to my post,I've started the Anastrozole tablet for 6 weeks then go back to my oncologist with a new blood test,in that time will make up my mind about the trial, I think I don't have too many opinions so will take the trial. You take care of your self ..:Lorraine xx
Hi Lorraine ,I was wondering how you were, sad it’s not the best news but thankful your oncologist has a plan . I hope the shingles are retreating , sending a big hug across the oceans to you xxJulia
Hi Jules, Thank you for thinking of me ,yes the shingles is finally settling down,sending you hugs from down under and hope your treatment of carbo/caelyx is giving you good results..Take care Lorraine xx💙💙
Hi , I am off on a cruise round the Med on Sunday so I really hope it is working , I don’t feel ill so hope that’s a good indicator ( this chemo given now instead of watch and wait so I could go on cruise ) . Blooming skin is driving me nuts but it has been hotter than normal here . All family on this cruise making memories . Hope whatever the new treatment is it is successful.Speak when I get back , much love xxJulia
Hi Lorraine, Glad to hear that you are starting to feel better from the shingles. It’s good that your onc has some other options in mind for next steps, and I’ll be keeping everything crossed that one of those brings you really good results.
HI Gina, Thank you I am feeling better from the singles, I think it would be a good idea for all our lovely ladies to talk to they Gp or oncologist about the vaccination, I got shingles becourse my immune system for so low.
Thank you for keeping everything crossed, I hope it works so you can uncross everything..Take care Lorraine💙💙 xx
It may be of interest to the other ladies - I asked my GP about having a shingles vaccine & he said I wasn’t in the correct age bracket (70 in UK). Nor for the pneumococcal vaccine...as usual I couldn’t think quickly enough to say, “But what about prevention for someone who has had OC?” So I will ask my Oncologist. A (nursing) friend was worried because the shingles vaccine is a live vaccine...so I’ll try to find out more info.
HI Linda. yes defiantly talk to your oncologist first, my Gp told me to check with Amanda my oncologist and she said no, not while I was on treatment. this is hard as I always seem to be on treatment,it is a live vaccine.
Here in Australia if you are 70 and over it's free , you can pay for it if you want.arfter seeing my shingles my daughter has been to see her GP it's $180 she feels it worth it.
Shingles can develop at any age more so if you have chickenpox, I wish I had know about the vaccine earlier.
Very sorry to hear the latest chemo has not had the desired effect, Lorraine. Although... most of your tumours are stable. Wouldn't you rate that as positive? How are you feeling overall, aside from the %) (€& shingles? Still holding up ok... tumours/treatment not causing too much trouble right now?
Fingers crossed you get into that trial, and it shrinks your tumours. Or maybe after a while, chemo could become a viable option again. Or a different hospital may offer another treatment/trial, via a second opinion.
Aromatase inhibitors / anti-hormone treatment sometimes seems to get thrown into the mix as a last resort. Oh, let's try these.. can't hurt. But they might just do the trick, so yah, I'd definitely try them if I were you.
Actually I'm rather desperate to get on them myself, as I hope they will help to lengthen the time before my next low grade OC recurrence. Will speak to my oncologist on Friday and hope to have a prescription in my hands this week.
Hi Maus, thank you for your reply, yes the original cancer is stable but my 125 has gone up to 1000 and when the chemo did not bring it down, I had the scan and this showed the one on the adrenal gland had enlarged.
I've started the Anastrozole tablet for 5 weeks then will go back with a new blood test to my oncologist, it gives me 6 weeks to decided if I will go on the trial.
I hope you have that prescription in your hand also..Take care Lorraine xx💙💙
Hi Suzanne, Thank you love for your wishes .especially with the hard time you are having I hope you are home now and feeling a lot better and can now eat a nice meal.
This link may be of help. It’s one recommended as reliable.
It’s good to hear your oncologist is exploring further options, I’ve read the trial details myself, finally something that’s available to wild type patients who are platinum resistant. Good luck xx
HI Jessica, thank you for your reply,My oncologist has given me time to think about the trial as I don't have too many options at the moment it 's a good idea. I've started the Anastrozole table for 5 week then I go back to my oncologist.
Thank you for the link very informative..Take care of yourself Lorraine xx
So glad your shingles are clearing up and that your oncologist has a plan. I am new to the world of cancer so I am sorry I cannot share any experience/wisdom but I can send my best wishes! Good luck xx
Thank you for your reply and best wishes, so glad you have found our lovely site we have some amazing ladies who can give you advice and encouragement at all times,,
HI, Thank you for your reply, the shingle is a lot better now back to the cancer treatment.
I think it very important that we give encouragement to each other especially the new ones, as we all remember when we were first diagnose how scared we were
The ladies one here have help me so much in the last 4 years,we have had some very sad post but when ever I've needed advice you have been there for me,
It certainly looks as if the trial drug has promise. When do you have to let your oncologist know if you’d like to start the trial? Or is she suggesting you definitely have the anastrozle first?
Hi, I've started the Anastrozle tablet I go back in 5 weeks with a new blood test as for the trial I can let her know then, but I'm sure if I decided before hand she would put me in for the trial now.Take care Lorraine xx
Hi Lorraine, I don’t post very often but do read daily, was hoping someone would mention anastrozole, I was given this in April of this year as hopefully a holding measure for a small re- occurance wont know if it’s working till I go back in October, side effects are bearable,tiredness and a few aches and pains but I’ll try anything if it delays chemo again ,glad you are feeling better and fingers crossed this will work for us both.
Hi ,I;ve started the Anastrozole tabets one a day,this is for 6 weeks then back with a new blood test to see if it has results. I hope it will give you the results you want and yes fingers cross it will work for as both..take care Lorraine xx
Hi Lorraine--did you ever find out if you can have the shingles vaccine if you had the shingles? I would get that if you can...twice would be too much, and so glad it is better for you. As far as your trial---from all I read, what I see on this forum and another I am on, there is something that works for each of us but what that something is, is different for everyone so l hope whichever you do (or both if one doesn't work) is your magic potion. Fingers crossed and hoping to hear good news after 6 weeks time. oxoxox Judy
Hi Judy, My Gp wanted to give me the vaccine but my oncologist said no not now, if you are over 70 it's free or it's $180 my daughter has booked herself in as she said arfter seeing me she was scared of getting it.
Thank you again your encouragement I'm on the Anastrozole tablets the trial also sound good.
Hi Nancy, I'M BACK.😀 yes the shingles was hard it took all my attention away from my cancer ,now I need to look at my options as you said,the trial sound like a good option.
Take care of your self hope all is well as can be Lorraine xx
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