Letrozole and Tamoxifen

Sandra has been on tamoxifen since finishing chemotherapy I think she has seen some reduction in some of her tumours as well as the CA125. She has had complications but not sure if this is due to the drug or not. Hopefully Paul or Sandra will be able to confirm this.

Hi Lorraine. Yes .. It'll be good to hear a reduction .. X x

I have high grade serous Ov. I had 42%positive receptors but the letrozole had no effect for me.

If you are fit for the trial I would have a go. You could probably keep the hormone treatment in reserve. I am on my 3 rd trial. Although the first two didn't shrink the tumours, I feel they may have held them back a while. And if you aren't responding they soon stop the trial. Once you are in the trial system you seem to get offered trials you never heard of.

Good luckxx

You're quite right about getting yourself into the trials system. It's one good reason to select a hospital with a range of them on offer.

I didn't realise you'd started your third trial already? How is it going? How do you feel? xxx Love Annie

Hi SS .. I hadn't realised there was a percentage. I thought it was yes or no. I learnt the other day that only 7% of women with Ovarian are offered trials. The trouble with response monitoring is that mine doesn't show up well on CT at all and I'm not offered a PET instead of CT. Apparently, they don't offer it in my hospital. My recurrence was confirmed when I was taken in as an emergency and was seriously ill. My oncologist recognises that I'm likely to have a series of emergency admissions if I last any length of time. My last biopsy was analysed by my local hospital and then by my cancer centre. After my appointment with my oncologist last time, I rang my CNS who confirmed just what you said ..that even hormone receptor tumours sometimes don't respond to hormone treatment. She said it was why they stopped giving it so much. When I asked if I'm hormone receptor, I was told to write in which I didn't do. My oncologist has said that my hope us a MEK trial but she can only work with what she's got, can't she? So, if I can find out if the trial in Italy is at a public hospital and not a private one, the plan is set. T xx

Most of what i,m about to say i,ve pretty much said before.

We know that in a high percentage of breast cancer cases after 1st line chemo and radical surgery, ladies are given Tamoxifen or Letrozole over a 5 yr period.which stops the disease returning and is highly effective. We also know there is a link between breast and some ovarian cancers and therefore for 15% of ovarian cancer cases then these hormone treatments can slow tumour growth or stabilise the disease. Unfortunately not enough study has been conducted to confirm this.

Most will remember Sandra was told her chemo journey came to an abrupt end last July on the backdrop of scan results which showed extensive progression in thorax, abdomen, pelvis and lymph network inc bone mets which is considered rare with OC. She started Tamoxifen as a last throw of the dice, Her scan in Nov confirmed stable, no further growth or progression. Her visible lumps on neck, groin and back were smaller. We knew her bile duct was surrounded by disease back in Jul and come Dec she started getting blockages and jaundice followed by infections. This prompted a scan in Jan and stents last month. The scan did show some progression and some stable disease, The previous areas were stable but new bone mets in pelvis and pubic bone are signs of progression. In essence it showed to me that the Tamoxifen is unable to cope with the volume of disease.

It is my belief that the decision to move to hormone therapy was too late in her journey, far better to use tamoxifen post 1st line chemo and surgery when the evidence of diseases is at its smallest or NED. This would extend remission times by months and perhaps years and rather wait for studies to be conducted in the future, oncologists, should at least try using it between chemo, there is nothing to lose but plenty to gain. Tamoxifen can be prescribed by a GP. Some oncologists are frightened to consider it but should be said it is not suitable for everyone but unless you try.

Paul..."Indigo- Blue" has just posted a question (on the question thread) and it does seem she was put on Letrozol (or tamoxifen not sure) early but it was only successful for a short time, (take a look)

what do you think ? Love x G x

Yes, maybe this is why it's not given and I wonder whether this happens in a lot of cases. It'd be interesting to know what studies have been done, wouldn't it?

When I went to a meeting at Liverpool, an oncologist there did say in his speech that we might be missing a trick with Tamoxifen... X

Dear TIna,

But you are going to a hospital that has a range of trials on offer, in fact your oncologist is the Onologist lead for these trials.. isn't this the case?

The way I see it T is that we haven't got this particular trial on offer in the UK (or have we?) if you can get on a trial in EU then this seems the way to go...but what a dilemma... my heart goes out to you... Sending you my best wishes on your quest for suitable treatment love x G x

Thank you Gwyn .. Today had a wonderful outcome though ! X x

Thank you MM .. The outcome has been very good x x

Hi! TinaB

I was put on Letrozole, March 2012 (3rd occurrence). Too dangerous for surgery & no chemo due to continuous low platelets & damaged bone marrow. There were no other options for me & was told that there was a lot of oestrogen in my body. OC attached itself to my right kidney & ureter tube on 2nd occurrence so have to now live with a kidney stent & it is changed every 6 months in hospital. In March 2012 tumour was 16x12 & after 6months had reduced to 10x7 & has stayed that way ever since. Last CT scan in November showed no change & tumour at the moment is stable. I will now be 2 years in March on Letrozole. I have been told that it will stop working at some point but it seems to agree with me. Very little side effects for me & I feel extremely lucky. CA125 is sitting at 7 but when cancer came back I only had a reading of 15 but my Consultants don't take any chances which I am grateful for & decided I was due a scan & that's how it was found. I sincerely hope & pray that you get your trial.

Look after yourself

Iris

Hi Iris ...someone did answer the prayer yesterday. Someone said, that, yes, they are running the trial and yes, I could go on the list, and yes, I could call again. Nothing was too much trouble. I couldn't believe it and wrote it in my post 'Getting treatment in another European country' so if you're inclined, you could read it. I was very moved by the humanity in your post Iris. Maybe it is very significant that you were producing lots of oestrogen naturally and maybe these hormones were causing the cell disturbances in the first place which would make your case very different and your response and outcome very different to the majority. I was thinking that if there's a category of women like that, it would mean hope for a long period of time for you and other women I've met who have told me success stories with hormone treatment. I so hope so. Love to you T x x

X x

I am taking letrozole and avastin for ovarian cancer, so far has reduced the cancer & stop further growth. Good luck everyone xx