Would like some advice on hormonal tablets and results

[lorraine71-Australia]

Hi ladies, would like to read some advice and results if anyone has had hormonal tablets this is one of the options my oncologist is looking at for me, if this latest treatment does not work,Thank you hope you are all taking care of yourself Lorraine xx

[GoldenGourd]

Lorraine I’m not any use in terms of advice on this but wanted to say hello and send you my best wishes, hoping the treatment does work for as long as possible. Xx Netti

[lorraine71-Australia in reply to GoldenGourd]

Hi Netti, Thank you for the wishes ,I'm still on Carbo/Caelyx I've had a quite a lot of caelyx over the last 4 years so my oncologist thinks the cancer is becoming used to it, so she suggested hormonal tablets as I said ,I'll know in about 3 weeks when I have my next 125.

I hope you are are as well as can be, let us know take care my friend Lorraine xx

[harpist_UK]

Hi Lorraine - I have just been given a packet of Anastrozole to try - no longer in a position for or wanting heavy duty chemo. Can't comment as yet but will let you know. x

[marylondon in reply to harpist_UK]

Hoping the Anastrozole is very effective for you . Will be kinder than chemo .

X

[lorraine71-Australia in reply to harpist_UK]

Hi Thank you I'm not sure which hormonal tablet she would put me on if I need it, I will ask her about Anastrozole. I hope it works for you best wishes ..take care Lorraine xx

[harpist_UK in reply to lorraine71-Australia]

We need to clutch every straw we can, Lorraine! Good luck!

[Maus123 in reply to harpist_UK]

Hope the Anastrozole works for you. Xx. Maus

[CharlotteSo_UK]

Hi Lorraine. My mum has low grade and she was on letrozole for 5 years which kept her stable. When that stopped working, they tried tamoxifen but whilst the ‘old’ sites remained stable, the newer sites continued to progress. She is now on a trial but they had said they would not be adverse to trying anastrazole given her good response to Letrozole.

All the best

Charlotte xx

[lorraine71-Australia in reply to CharlotteSo_UK]

Hi Charlotte thank you for your reply and pleased to read that your mum is doing ok on the trial hope it continues all the best to you both Lorraine xx

[Hidden]

Hi Lorraine, hope you are as well as possible in the blue mountains (bit nippy I expect!). I tried Letrozole which is an anti-oestrogen tablet. I tolerated it very well but it didn't make any difference to my CA125 and tumour progression. Other women have had very good responses, so it's certainly worth trying. Do you know which drug you are being offered?

Best wishes Dawn

[lorraine71-Australia in reply to Hidden]

Hi Dawn, Thank you love for your reply I don't know which one she will try I will find out in 3 weeks if the carbo/caelyx has stop working ,I have had quite a lot of Caelyx in the last 4 years so it to be expected that it might stop working. Yes it is cold and we get high winds being on a ridge in the mountains.

How are you going with your trial?..Take care Lorraine xx

[Hidden in reply to lorraine71-Australia]

It's been windy here too - good weather to cuddle up by the fire with the cat and a book! So far the trial is fine, only on week 2 and no real side effects at all ... my bowels seem a bit happier ... if they're happy I'm happy!!!! My first real indication of any impact from the trial drugs might be at the end of week 3 when I will have a CA125 result. Is there any prospect for you to try the parps?

Take care and stay warm, best wishes Dawn

[lorraine71-Australia in reply to Hidden]

Hi Dawn, My oncologist has suggested a parp. I don't know which one we will see next appointment. Glad you are managing the side effects and yes a plus if your bowels are good, I had a bowl blockage and ended up in hospital not good,

best wishes for your 125 results let me know how you go. Take care Lorraine xx

[Manchesterlady]

Hi Lorraine. Can’t give you any advise but wishing you all the very best with your treatment xxx

[lorraine71-Australia in reply to Manchesterlady]

Hi Love, Thank you for your wishes keep your chine up and as always you are not along when you are on this site ,,take care Lorraine xx

[Seasun36-uk]

Same from me - greetings from sunny (!) UK! Love to you xx 🌹🌷🌺 🔆

(I think it’s worth trying Lorraine but I haven’t any specific knowledge).

[lorraine71-Australia in reply to Seasun36-uk]

Hi Linda, thank you for your wishes and the greetings from sunny Uk ,it's cold and windy here but should not complain our winter are no where as cold as yours.

hope you are doing ok take care Lorraine xx

[Nancy222]

No advice, but I wanted to tell you how much I admire your resilience and attitude and your consistently kind help. XXOO

[lorraine71-Australia in reply to Nancy222]

Hi Nancy. Thank you for your words maybe it's not resilience as much as stubborness I know it's not curable but I just keep trying.

How are you going keeps us updated on your surgery take care Lorraine xx

[Lily-Anne]

I had hormone tablets suggested last year but then it all went a bit quiet after my chemo. Have you tried a search on here? I know it can throw up random things but you may find some good info

LA xx

[lorraine71-Australia in reply to Lily-Anne]

Hi La, Thank you for your reply I did do a search found a few not a lot of information but I will ask my oncologist about the ones the ladies have suggested at my next appointment.

Best wishes and hope you are well as can be Take care Lorraine xx

[Hidden]

Keep up the stubbornness Lorraine; anything that keeps you in the right direction.

Best wishes. Pauline.

[lorraine71-Australia in reply to Hidden]

Hi Pauline, Thank you , I'll try but I must admit this last week has been hard to lift my spirits, when my oncologist thinks Caelyx might be coming to a end for it's effectiveness,

I've just about had all Chemos in the last 4 years so where do I go from here.

She has mentioned hormonal treatment ,I don't know which one she is thinking of.

I've been looking up trials and found one on Olaparib and also on Avastin, sometimes we have to take a active roll in our treatment.

I know you have had good results on Avastin, I'll ask her as you know it's only approved here for BRCA positive at this time, I'm negative,

Maybe I'm finding it hard to pick my self up be course of the cold and very windy weather we are on a ridge in the mountains and the winds come down from katoomba and brings the winds from the snow, I hope it's a bit better over your way.

Thank you again when I read your positive post it always gives me hope.

Take care Lorraine xx

[Hidden in reply to lorraine71-Australia]

Hi again Lorraine. Just to clarify that Avastin isn't aimed at BRCA positive; I'm BRCA neg. However, it's considered to be a maintenance drug as far as I know i.e. chemo gets your CA125 down & Avastin keeps it there. Having said that 'tho, it's always worth asking questions - things are being learnt and changes made quite rapidly.

And yes, I'm sure cold weather doesn't help at all. Our winters in the west aren't as bad as yours, of course but we've had an exceptionally wet and miserable June but currently having respite of 4 beautiful days until it hits us again tonight & continuing for the week. It can be hard to keep your spirits up when the weather gets you down.

I do hope your onc will sort something out for you.

Best wishes. Pauline.

[lorraine71-Australia in reply to Hidden]

Hi, Thank you I thought it was only for BRAC positive good news, I will ask about it thank you Lorraine xx

[Jessica-DianeB in reply to lorraine71-Australia]

Have you had your actual tumour tested for any BRCA mutations. In a small number of cases the germline results can be negative but the tumour itself harbours the mutation. Comes to something when we are wanting to have a mutation to access drugs. Hence news about nariparib is great. Though those resistant to chemo have an even bigger task on their hands. I really hope the hormone inhibitors work for you. Your doing amazingly well and have given me so much hope xxx

[Maus123]

Hi Lorraine. I don't know which hormone tablets your medical team is considering, but there is apparently some research work going on with regards to anti-hormones/HMT (hormon maintenance therapy, specifically Letrozole) having a beneficial effect for high grade OC patients.. not just for low-grade:

ncbi.nlm.nih.gov/pubmed/291...

Personally, I tried Tamoxifen for 4 months but it didn't prevent my recurrence. Still hoping though (against odds maybe) that HMT - following my current chemo - will work to either extend my progression free survival time and/or bring the ca125 down somewhat. Unless my ca125 really begs to differ and considers 100 a healthy baseline.

The side effects were very manageable, so I think it doesn't hurt much to try HMT.

First, I hope the Caelyx is doing the trick for you again though.

Hugs, Maus

[lorraine71-Australia in reply to Maus123]

Hi Maus, Thank you for your reply and the very interesting information when I have my next appointment I have a list of question to ask and Letrozole is one. I am hoping the Caelyx is still effective I've have had quite a lot in the last 4 years.

my 125 has jump up to 500 at the moment so the next 125 will tell

Take care Lorraine xx

[Jessica-DianeB in reply to lorraine71-Australia]

Hi Lorraine,

Have you ever been able to have Caeylex longer than the standard 6 cycles? Xx

[lorraine71-Australia in reply to Jessica-DianeB]

Hi jessica, My history on Caelyx is 6 months this was my 3rd treatment then again as 5th treatment this time was Carbo/Caelyx I had it for 8 months, Caelyx has always given me good results, Caelyx is being used more in the last couple years and it was always noted that you could only have 6 cycles.

I've had some bad side effect the funny thing single Caelyx was harder the Carbo/Caelyx.

I took a break from chemo to try a trial drug, the trial effected my kidneys so had to stop,now my 125 is up to 500.

I'm now back on Carbo/Caelyx just had my 2nd one , for the first time my 125 has not gone down so my oncologist will look at my 125 in 3 weeks, it could be that caelyx is is not effective any more for me.

My history is as soon as I stop chemo my 125 goes up so I had quite a lot of chemo in the last 4 years.

As you know we all react to chemo differently my oncologist kept a watch on my heart the whole time I was on Caelyx as this is one of the reasons Caelyx was thought it was better to only have 6 cycles.

I hope I have help Take care Lorraine xx

[Jessica-DianeB in reply to lorraine71-Australia]

Thank you for replying

This is very interesting as I’ve recently seen a well known professor and having had 6 single agent caeylx myself with only response from 5&6 he recommended carrying on. I mentioned that my local onc always said ‘6’ . So was just interested if you had gone against the grain. I guess he’s the expert and I wonder if being a professor he has the authority to overrule guidelines for private patients. I’m nhs. So eager to chat this through with my onc. I can totally see the professors point of view! Especially as I’m currently plat resistant. Xx

[IrishMollyO]

Hi Lorraine

Last Dec I was diagnosed with Lobular Breast Cancer and was assured it was a Primary Cancer and had no connection with my PPC. I had a mastectomy and managed to skip chemo due to getting the right score in Oncotype test. It was straight to 24 sessions of Radiotherapy. Then I was prescribed Letrozole or brand band Arimidex as my cancer was estrogen driven. I did ask them if it could also prevent recurrence of my PPC but the young doctor thought I was grasping at straws I think ! I have since read that it has been prescribed for exactly that. Now I’m keeping my fingers crossed that it’s actually guarding me from all sides. All will be revealed in a short while as I’m having a scan next week and will be given the results of that and my latest CA125 test on 7jul. Will let you know how it goes. Meanwhile anything with potential positive results for you is worth trying. Take care

XXX

💚💕

[lorraine71-Australia in reply to IrishMollyO]

Hi , Thank you for your reply , I will ask my oncologist about letrozole when I go back.

I know you have been having a hard time so I hope the scan and the 125 gives good results I'll keep my fingers cross and any other body part I can and do make sure you let us know. Take care Lorraine xx

[Juleswhee]

Hi Lorraine , sorry no help at all but hope you find something that suits you xx thinking of you xx

[lorraine71-Australia in reply to Juleswhee]

Hi, Jules Thank you to one ginger head to a another I had red hair all my life then when it fell out came back totally grey , I suppose that also comes with age this is what my daughter said. I hope you are feeling a bit better loosing mum and having treatment is hard, I hope you have support .Take care keep in touch Lorraine xx

[gwyn64]

Hi Lorraine,

I have low grade serous oc. I was put on Letrozole which kept me stable for between 15/18 monthsbefore it stopped working. Had some side effects which reduced as time went on but I managed them without needing any pain relief. Post another recent surgery I am now on Aromasin (estestamine) - now 4 months on and still clear scan. No side effects that I can say for me. My cells are oestrogen positive/progestoner negative.

Best wishes to you down under.

Gwen xx

[lorraine71-Australia in reply to gwyn64]

Hi Gwen, Thank you I will ask about Letrozole when I go for my next appointment.

I hope Aromasin treatment gives you good results

It's very cold downunder at the moment, I live in the Blue Mountains and not only is it cold but the wind is coming down from the snow but our winters are not as cold as yours .

Take care and enjoy your lovely warm weather keep in touch ..Lorraine xx

[gwyn64 in reply to lorraine71-Australia]

Hi lorraine

Keep us updated pse. As far as cold and wind is concerned: we live in the North of England and I think it is pretty cold and windy here, especially this year with the "Beast from the East" blowing a continuous gale. . We also get our fair share of rain. Having said that, we have had some lovely days in the past few weeks. No chance of getting bored with our weather pattern in GB - it's always changeable!

I had a review this last week following a scan and given NED again. So pleased!

Gwen xx

[Btte]

Hi Loraine I was diagnosed with stage 3 c high grade serous carcinoma sarcoma in July 2012. 4 rounds chemo later now taking Letrozole 2.5mgm daily since August 2017. Last scan stable, due next scan 26th July. Few side effects, weight gain, joint pains fatigue hot flushes. I am getting used to the side effects. Will post results. Hope all goes well with you. Love Bridie

[lorraine71-Australia in reply to Btte]

Hi Bridie,Thank you for your concern, from the feed back Letrozole is worth looking into I will when I go to see my oncologist, glad to read your scan is stable hoping it continues for a very very long time.

Take care and keep in touch Lorraine xx

[amandanewe2]

hi hun xxx

I dont know about hormone tablets but Ive had tuning fork therapy and the lumps i felt defo shrunk and i felt so postitive good luck xxx

[gwyn64 in reply to amandanewe2]

Hi amandanewe2

Could you tell me what tuning fork therapy is?

Best wishes

Gwen xx

[lorraine71-Australia in reply to amandanewe2]

Hi Amanda, thank you for your reply i'm still hoping the Caelyx will work, I've never heard of turning fork therapy but glad you had results from it..Take care Lorraine xx

[Di16]

Sorry this reply is very late, I've been having difficulty with my emails which I only got sorted out yesterday. I've had several types of hormone treatment. We are all different, &what works for one may be different from what works for another. Exemestane was the best for me so far, Anastrazole helped a bit, Tamoxifen didn't help at all. I have recently started taking Letrazole. I had heard good things about it like some of the other ladies, so I'll see what it does for me. Di