Hi there Ive been on letrozole for 3 months or so now and good news, the tumours have shrunk! Taxol and carbo didnt work for me, then I had the surgery and have been on letrozole since June. Ive seen the radiology report and its very encouraging-everything has shrunk! I still cant quite believe it but I just thought Id share with you all (sorry I havent posted for ages but Im trying to put this in a box and not talk about it all the time), hopefully it will give others some hope and encouragement that there are things other than chemo.
I would like to add that since my diagnosis in Nov 2011, I have been drinking green juice, wheatgrass, apricot kernels, having reiki and generally not 'fretting' too much. I will continue to eat/drink superfoods. All through treatment my bloods were good. Oh and my ca125 was always around 120 but its now at 5.
Hang in there, theres always another option.
Love to you all K xx
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sunny1
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I'm so pleased for you and it's given me some hope that it will do the same for me. I've only been on it for three weeks and it's my 5th line chemo. I see my Onc on Monday and hope my CA has shown some improvement or at the least not got worse. I hope things continue well for you.
Good to hear......i wonder can i ask was this offered, or did you ask. The reason i ask is my wife has had carbo/taxol (jan - may 2011) Taxol for 4 weeks in Nov/Dec 2011 and then gem/carbo (dec 11 - June 12). The Onc is talking of her going on a phase 1 trial. But i guess we are hoping for another crack at an established chemo first.
So if this is working for you, as it appears to be, i wonder if there were any special circumstances that led you to this one.
Hi there, I had 3 cycles of taxol/carbo that didnt do anything to shrink the tumours, then I had my debulking. I was then referred to the Marsden and they suggested letrozole, so my onc put it on repeat prescription and then I was scanned again 2 weeks ago which showed the shrinkage (one nodule had gone down 25%). So for now Im on 4 monthly scans to monitor it.
Thanks so much for posting up your good news. You will have given so many of us hope this morning that every week new treatments are available and that one day there will be a treatment for us all.
I say congratulations on your stunningly low CA125 count. 5 is pretty amazing!
Thankyou so much. I havent been on here much but I had to share, as I know how much 'bad' news there is and I cling on to all the positive stories as much as the next person. Hope, its a wonderful thing. (No denial in my camp but I have cancer cancer doesnt have me)
Well I look up what foods are best for the immune system (after all, thats what we need to boost to kick this ***** out of town)....I mix up whatever I have in the fridge, so that usually comprises of some greens kale, spinach, celery, beetroot, carrot, coriander, apple, always adding ginger and lemon, and a sprinkle of turmeric and black pepper (anti inflammatory), anything really, Oh and the main thing is wheatgrass. I grow my own now, I have a couple batches always on the go. I also sprout mung beans and add them to salads and juice them too. I eat goji berries and occasionally add spirulina and maca to my diet.
All through chemo and since then I have juiced. My iron has never been low, people have always commented on how well I look and I feel back to 'normal' after the debulking which was 6 months ago.
Wow thanks for this tip. Just as soon as I rediscover my juicer I'm going to have a go at this. If you don't grow your own wheatgrass what sort of shop do you go to buy it. I've just started the Budwig Regime. My sister has been a cancer survivor for 38 years. Three incurable and aggressive cancers. She's followed the Hay diet and takes plenty of exercise. She believes her body has now found the ability to fight cancers. All her moles have disappeared. She's certainly a testament to positive thinking and living though not everyone is as lucky to even be given this opportunity.
Good luck and I'm hoping you continue sling the same route. Xxx love Annie
Hello Sunny,
Thats BRILL NEWS !!! well done, and long may it last.
Thanks for the boost for us all today, gives us something to hold on to.
This is wonderful news! Letrozol, like so many other drugs, does not oblige every ovarian cancer patient. But we have to keep trying just in case luck could eventually be on our side. Thank you, Sunny, for sharing with us a hopeful piece of information. I'm also experimenting with juicing these days, lots of organic lemons, beetroot, celery, ginger, pineapple, kale..I wonder if it makes any difference but somehow I can feel something is clearing up..
The juicing will be having an effect to your body. How many times do we hear 'you are what you eat', it stands to reason if we put goodness in our body then our organs are going to lap it up!!!! I have much more energy, glowing skin etc when I juice, if I get lazy (my biggest problem with it) then I soon feel lethargic, depressed and out of sorts, I know its my body craving freshness!!
I am presently 3rd. line chemo and had my 14th, of 18th, weekly sessions on monday.I only finished last set of chemo in november which was taxol and carboplatin.Because it reoccured so quickly in may, they could not offer me the whole treatment as they said it was too soon so they put me on weekly taxol. the results of my scan showed all the tumours are shrinking, actually a better result than after the last treatment as only some of the tumours had shrunk then,my tumour marker was 445 and was down to 23 after 13th. treatment so i am delighted! as this is the 3rd. set of chemo in 2 and a half years so was afraid of becoming immune to it.I have still 4 more to go so should even drop lower.we all live in hope and push on as life is precious and for the living thank you all for the listening ears it means so much to know others know exactly where i am at.xx
So pleased for you, K - from another K also on Letrozole: my 5th week! My CA125 was down to 26 after chemo finished last Nov but it's steadily gone up, last bloods said 100, so my oncologist decided to try me on this sooner than we expected. I think my GP nagged her to get me on it, bless her. For some reason, I was more scared of starting this drug than chemo, weird. Like you, am eating healthily and even losing some of the sratted steroidal weight gain. As per my nutritionist's instructions, have given up all milk products, (I so miss cheese), coffee (waaahhhh) and alcohol - not much missed although I did give in to a couple of small glasses of champage last month when on holiday. Anyway, thanks for your positive news and good luck xx
The only side effects I seem to have on letrozole are the hot flushes (which could be because of the debulking so I have a double whammy really), and I get a bit of joint pain. Its usually in the backs of my heels in the morning, and sometimes in my elbows. However, I can put up with that if its kicking this cancer into touch. Im interested to know how you fare on it too-lots of love x
Hi again, ditto with the debulking, the surgeon was pleased with his work! Post-op & chemo, I had hot flushes off and on, they seemed to have lessened before I started on Letrozole, but I notice I now have hot, sweaty moments, usually when in public, chatting to friends! They definitely appear to be happening more regularly, in short bursts then I cool rapidly. I also have developed odd days of muffled hearing with loud tinnitus (I had that a lot with chemo, then it also reduced) but it comes and goes, so I've stopped thinking about it so much. I was warned about painful joints, so far I feel nothing different to before, so can't say if there's a change. xx K
Hello sunny1, sorry for delay in replying, the ovacome website seemed to not to want to load earlier today. I am doing ok, I think: I haven't had the achey joints (yet) that I was warned about but have had severe heel and ankle pain. I thought it might be plantar fasciitis so my GP got me an appointment with a podiatrist who recommended stretching excercises, which do help. It's still tender now and then, but has eased a lot, allowing me to go for walks again - I was hobbling around very slowly and not enjoying being out and about. I'm definitely having the strongest hot flushes followed by extreme chills - I didn't have them as badly following the debulking last year! Onc says it means the letrozole is doing it's job, so I welcome them. My CA125 did go down a bit according to my last blood test (from 100 to 88). My scan was a bit of a shock though - new nodules - but they are tiny and the onc seems to think they are calcified. May be the letrozole or may be residual chemo effect, who knows. She wasn't too bothered, or at least didn't show me she was! I also experienced a cycle of dizziness and flu-like feeling since I started taking the drug, plus really bad tinnitus, this came on practically every 4 days. I dread them as they make me feel quite ill, but again my oncologist wasn't too concerned and she doesn't think it's connencted. Maybe I had a bug. I have had an occasional feeling of nausea but I've only taken anti nausea pills 3 times and it does fade.
So I carry on with getting fit, eating healthily, excercising and doing stuff I enjoy - I went to Stockholm for a long weekend and loved it, although I did have one day when I was in tears due to my poor feet hurting and it really hit me how my body was letting me down. But I bounced back and enjoyed the rest of my trip. I've been to a couple of theatre nights and films and have more planned. I've given up all dairy products on the advice of a nutritionist (dodgy from the hormone pov) and she also advised my giving up coffee - sob! My onc agreed with my giving up the milk & cheese but can't see why coffee has to go. So I have the odd one if I feel I need a treat.
Thankyou for all your comments, I am so glad that it has had the effect that Id hoped, by giving some hope. Im under no illusion that this will 'cure' me or get rid of it but the fact it has shrunk just almost knocked me off my chair. For the first time since diagnosis I had the confirmation that finally, something GOOD has been told to me. After failed taxol/carbo and then getting poorly after debulking (post op internal infection resulting in sickness for 9 days and 2 blood transfusions etc etc), suddenly things are going my way for a change.
My onc said that she hoped the letrozole would stop/slow the growth. To hear that it had got smaller was beyond anything Id imagined!!!! If it continues this way then Ill be doing cartwheels through the cancer ward (erm well maybe not but you get my drift)
Love and hugs and hope to all of you. This thing is so so hard to live with, especially when people are always saying 'You're so strong' etc makes me think 'You dont know what its like when every day my waking thought is "Ive got cancer" and have to haul myself out of bed to face another day with this could over me' But hey, this is turning into an essay so Ill stop now!
Hello all, just an update on me and the letrozole. Had my recent ct results today and there is minimal shrinkage still going on, so the onc said for me to have a scan in 6 months rather than 4! She said my cancer is slow growing so it means slow to respond too. So all in all its good news and again I feel like I have a bit of a reprieve. Im continuing to juice every day and have been on the apricot kernels too for a year, I KNOW they are working. Am going to start on curcumin too. Still have reiki about once a month which helps my state of mind too....Love to you all xx
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- but they are tiny and the onc seems to think they are calcified. May be the letrozole or may be residual chemo effect, who knows. She wasn't too bothered, or at least didn't show me she was! I also experienced a cycle of dizziness and flu-like feeling since I started taking the drug, plus really bad tinnitus, this came on practically every 4 days. I dread them as they make me feel quite ill, but again my oncologist wasn't too concerned and she doesn't think it's connencted. Maybe I had a bug. I have had an occasional feeling of nausea but I've only taken anti nausea pills 3 times and it does fade. 
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Letrozole
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