hi penny - i'm er+ve too - have asked for oopherectomy and was told to hold fire and give myself a chance so having zoladex.
you must have been absolutely gutted to get mets after getting over the 5yr progression free period - i have it in my head that if it doesn't progress soon and i do enough - drug wise - to put a cap on it now that it will prevent further progression so i hope the avastin gives you the longevity i'm expecting.
thanks for your post. will have a look at trials but don't think i can get onto any here and as i don't need it just yet as onc wants to see how i go on femara therefore he won't be referring me to take part in a trial.
did you have any children before your diagnosis? i don't know why they are reluctant to take my ovaries - as they have been quite frank about me never having children - i suppose there could be a miracle break thro into stunting BC from advancing - who knows?........... live in hope
Hi! I live in Israel and until October 2007 enjoyed almost 6 years of good health after my BC diagnosis in August 2001 at age 35. Had a lumpectomy, Taxotere with AC, rads, Zoladex and Tamoxifen, back then.
When I was finally diagnosed in April 2008, after 6 months of terrible back pain, mets in lots of bones and a couple of lymph nodes in my abdomen, I had 12 rads to the lower back and to knock out my ovaries as I am ER+. Then I was signed up for the Roche trial and started at the end of May getting Taxol every week and Avastin every other week. I have had 2 scans since then with encouraging results - the last one showing little or no uptake of the radioactive dye. I feel much better and have been able to reduce my painkiller (Tramadex) to almost nothing - i.e 15 drops a day instead of 80!
My onc. did not give me any other choice of treatment as she felt that this was the best that was available for me.
The Taxol has been difficult to endure, but after the first 11 weeks, I started having breaks. I had 11 weeks straight, then a 1 week break, then 5 weeks and a 1 week break, 2 lots of 3 weeks with 1 week breaks, and now I still have Avastin every other week and the Taxol just once every 4 weeks. I also have Zometa every 4 weeks. This is way more manageable, and I have much more energy. I can walk again and feel my quality of life has really improved.
Perhaps you can look into getting on the Roche trial?
I wish you all the best on this horrible, difficult path.
Xeloda was shown to be a good chemo for which I have been taking on and off for a couple of years. Navelbine was also another drug and gemcitabine which unfortunately is not funded by my PCT. Tyverb also showed promise on the chemosensitivity test but again this is not funded but I have managed to get Avastin. As I said so far so good.
Cathy - definitley going to get a nice slice of cake with a coffee today - although think eating more fruit and veg is doing me good anyway - don't want to be nourishing any growth. Won't be able to pay for Avastin if i need it but have come up with some fund raising ideas which i will need to put into action and then if i don't need it before it becomes available on the NHS i can donate the funds to breast cancer unit at my hospital.
Spike i totally agree with different cancers sensitive to different chemo - don't know why chemosensitivity isn't done at time of biopsy - wouldn't that make sense? therefore treatment would be way more specific - if you have an infection and need antibiotics in hospital they send off blood cultures and see what bacteria is growing and can therefore give you antibiotics to target that bacteria. I did have a good response to tax (for primary) but not to FEC - and although side effects of tax not pleasant for me FEC was even worse. Did they offer you an alternative chemo after testing - could they tell if Avastin would have a good effect from the chemosensitivity test?
I'm on Avastin and am doing okay so far without too many side effects. I had liver tumours last year of which presently are now in remission through a procedure called chemoembolization and then laser to remove them completely. I am however having problems with my bone mets at the moment which is causing a considerable amount of pain in my right hip.
I agree with what you say Maria in that anything is worth a go. Drugs work differently for everyone and not one drug works the same in other people. I've had a test called chemosensitivity which determines which chemo best works against your cancer. This means that you are not wasting your time on a chemo that won't touch your cancer. When I was diagnosed with secondaries I was put on Taxotere. I only managed 4 cycles due to the bad side effects including being admitted to hospital for a week with septicemia. When I had another scan it was found that the cancer had grown whilst on Taxotere and then 3 months later I had the chemosensitity test which showed that Taxotere would do nothing to fight against my cancer.
We can't give up hope and we shouldn't discourage people from trying drugs which may not show promise in clinical trials. Each to their own but as I said before drugs work differently for different people. What about anti-biotics which work for some but not others, surely cancer drugs must be the same. I've met a gentleman who was recommended herceptin through the chemosensitivity test for his prostrate cancer. Herceptin has not been passed for use in prostrate cancer but it has worked for him and he is still in remission.
Good luck in whatever you choose to do.
You have made me laugh , post my primary I lost about 40 lbs went running three times a week, drastically reduced fat and alchohol consumption and WHAM look where that got me by 2007, massive liver involvement and a few bone mets thrown in, clearly I was nourishing the cancer as well! Being serious I suppose I feel I tried, being sad I think why did I bother!
As for Avastin Maria - I am on it, jury is still out, i think it is helping, but if I had to pay for it myself I wouldn't and couldn't as the costs are extraordinary....
I wont feel guilty about the odd latte and muffin then!! and i do want to put on a bit of weight as after diagnosis in Dec i was so stressed i lost a good 10-12lb - was paranoid that it was the secondaries eating away at me but think it was just stress! Maybe there is a lot in the saying "a little of what you fancy" being good for you.
Well i suppose if the hormone treatment was doing its job sucessfully you wouldn't be going for the trial drug so it makes sense. Again i hope it goes well - will be watching for your posts
I don't believe in the diet stuff either. When I had my first primary I changed my diet and lifestyle completely. I left work, became a student, adopted a non meat, non dairy, non sugar, low carb diet. I ate lentils, brown rice, loads of veg, some nuts and seeds and every now and again some steamed fish. I went to the gym three times a week, lost two stone and felt fantastic. Then wham! I found out I had a 3cm lump in my remaining breast. I decided I had obvoiusly been nourishing the cancer, as well as the other cells in my body. So I went back onto chocolate and ice cream and so on.
Re treatment while on trial drugs - I am allowed to stay on bisphosphonates but am not allowed other hormonal treatments or chemo at the same time. I have to clear any supplements I am thinking of taking too.
Now you're just being greedy - 94 is a perfectly respectable age to die at 🙂 - but i hope you get to 95 with your full faculties and remain well
I want to live till I'm 85 or 95 but I won't.
I am nearly 60, and have just applied today for my state pension...I think I'm luckier than those like you younger than myself but my personal hope to live is no less strong for my age. I do hope I get the first payment in three months time...and 2 years yes would be great! Otherwise a huge waste of a personal lifetime of National Insurance.
I don't think I have any control over how my disaese speads and that clear knowledge...that sense of relinquishing control of the uncontrollable helps me.
very best wishes to everyone living this expereince (I refuse to call it a journey!)
Jane - all i can say is from my own experience that my oncology team have been very good about not setting me up for a fall - indeed when the reg asked me last year what my expectations of follow up would be - i said to be scanned every 6months for at least the 1st 2 years her reply was that i needed to understand that psychologically this would put me under a lot of pressure (ie results day!!) and that they believed positivity a huge factor in enjoying life. I would think it goes against all their professional and personal ethics to put you through a treatment for the benefit of the future - they are trying their best to lengthen our lives not worrying about their future patients. If all doctors were afraid of facing death with patients we would have no oncologists. They are very aware on choosing their speciality the implications - if that were so they would all be going for GP jobs (for both the hours and the pay!) if private treatment and money were what they wanted they would all become surgeons - thankfully this is not the case.
I think you are very brave in wishing to die at the time of your choosing - maybe with time that will come to me - but i don't think i would ever be able to make that decision - at this stage i see cancer as a disease which has a process that i have every intention of interrupting. I don't see it as grasping a straws - i see it as taking as much control as is possible by having a positive attitude (as much as is possible) Death is something i consider will happen in at least 30-35years time (when i have had a chance to draw my pension for at least 2years!!) Ibut for that to happen i need to give everything a chance.
I wish you well and hope you get as long out of this life as you want.
I disagree that consultants don't set us up for things that don't give us a 'fighting chance' They know only too well that the drugs on offer are of limited benefit for many pateients, and that Phase 1 trials are basically about testing for the future. Some go along with a philosophy that trying any drug is better than facing the fact of treatment failure (many oncologists cannot face the failures in their trade). I personally think this is all tied up with the general culture of death talk avoidance. It is very hard to face the truth of our own mortality, the fact of the current fallibility of any treatments for cancer. Treatments for advanced cancer are at heart palliative and not curative though some tretaments do a very good job for some cancers of prolonging life.
I also don't do anything lifestyle like because I don't think diet/lifestyle will affect the progression or not of my cancer. I have a reasonably healthy diet but eat pretty much what I always have. I yawn at stories about eating and beating cancer.
For me hope is not solely based on the promise of treatment...I think we each has to find hope in the living that we are doing now. I am under no illusions that cancer is going to kill me..it will...I know there isn't a cure for me out there. I hope my death might be delayed (as much in my case by a slow growing cancer as by drugs).I hope my demise will not be drawn out, I hope I will not suffer and I wish I could die at a time of my choosing.
- deirdre i have said to my onc to keep me in mind for trials - he is aware as its a colleague/friend of his at the marsden that is conducting/involved in your trial. i think he wants me to give the femara a chance first - which is fair enough - i know that i am a little impatient as once i heard secondaries i was gutted - knowing i would never be going for that 5 and 10 year appointment to tell me i was still in the clear!! however am really grateful for the care i am having and have confidence that my consultant is very aware of the different trials. do you know - can they test samples for androgen sensitivity? are they already doing it? please please keep me updated on your progress - i hope this trial knocks the hell out of secondary cancer for you - it must be scary - do you have to come off all other treatment while on trial drugs? i mean the likes of zometa for instance?
- debs i am HER2-ve so lapatinib (Tyverb) wouldn't be any addition to me. Its not directly the health service that are not doing their job its NICE trying to be efficient with the funds available - however sometimes this is at the cost of lives it would seem. Avastin is available in the EU - any ideas on our rights to treatment in the EU - i know the NHS can pay for you to have an elective procedure done on the continent if you have breached your waiting time in the UK but don't think this extends to cancer and other secondary treatments.
-Jane i don't blame you for being angry. I don't know anything on PARP inhibitors - sorry - but if you are feeling strong enough i think anything is worth trying - something has to work is what i think. And the consultants wouldn't set you up for something that they didn't feel had a fighting chance - they're not going to put you through unnecessary psychological stress never mind physical unless they feel they can give you hope. Keep us posted and good luck with decision making.
Have any of you changed your lifestyles. I was reading about the effects of macrobiotic diets, gerson therapy etc. there do seem to be a lot of people who swear by them. Dr David Servan-Schreiber's case was interesting - he discovered he had a brain tumor while conducting research (a neuro scientist) - had it treated and it came back. Had it treated again with chemo and rads but after the 2nd time decided to change diet - eating organic - cutting out red meat and dairy etc - nothing that the nutritionist at the haven wouldn't recommend. Anyway he is still disease free - 9yrs later. I'm not personally someone that could replace western medicine with alternative treatments - so i quite like the fact that he advocates both. Anyone have any experience?
I consider myself very informed and involved and as such know there is little left in the drug cupboard for me (triple negative breast cancer regional metasteses).
I know that drugs such as iexempra, avastin, and sutent are used in other countries for triple negative breast cancer but for me I don't think the proof of their efficacy is worth the 'fight' to get them. Anyway as far as avastin is concerned neither rmy local onc nor an onc at the Marsden recommeneded it for me and I accept that judgement.
I am currently on vinorilbine for the second time...basically my last chemotheapy drug. I may go to the Marsden to discuss Phase 1 trials for PARP inhibitors...or I may not.
I am very angry that there there appears to be little radical research for new drugs for breast cancer, and in particular that new drugs for triple negative cnacer are barely on the drawing board. Why is cancer resaerch so badly failing so that desperate cancer patients are forced into lobbying for drugs which will barely give them a few more weeks...if that?
one of Richard and Judy's researchers rang last summer and they were hoping to cover the story once Alan Johnson gave his report on co payment. I do know he has kicked arse regarding funding for cancer drugs and that is still going through the motions. Even though I have avastin I am still making loud noises whenever I can. Not just breast cancer if there is an illness and a drug to help then that drug is a point of need therefore the health service is not doing it's job by denying it.
Have you asked about lapatinib?
Terry, hope Mrs T is o.k.xxx
Hi Maria, yes, that's the trial. It is a phase 1 trial and I think it is being conducted at just two hospitals at the moment (of which the Marsden is one). It's an accelerated dose study, which means that the first six women involved will receive the drug at the lowest dose, then the next six at a higher dose, and so on in batches of six till they reaceh the highest dose they think is safe. I've been told that if the drug doesn't do anything for me at the lowest dose I may be moved onto a higher dose.
It's interesting this drugs in the cupboard thing, because since I was diagnosed with secondaries it does seem as though the number of drug options has increased, what with the recycling of chemo drugs and now the recycling of hormonal drugs. Whether they work or not is a separate matter, though! One of the reasons I chose to move my care to the Marsden was because I knew that I would be more likely to have access to new drugs there than at my old hospital. You may want to flag up to your hospital that you are interested in trial drugs - they are not for everybody and being involved in a phase 1 trial is a bit scary but I am sure that my insistence on being offered whatever was coming up that might be suitable for me helped to bring me to the attention of the phase 1 trials team
Thats awaful - i really hope something works and soon. It sounds like your wife is having a very close eye kept on her and that the care in Spain is second to none. I'm not sure that Abiraterone is licensed for use in breast cancer yet so probably only available in trials - i am not sure about this tho.
All my very best to you and your wife. Please keep in touch with her progress
Here in Spain all the drugs are available, costs are not even a part of the equation, scans are done usually monthly. We have been on this road for nearly three years now, at first because the caner as so agressive they gave her six months to live, but she was a very strong ( Physicaly ) lady so she tolerated the Xeloda and Txotere really well.The Femara did not work at all.
However the cancer seems to be very aggressive, a great perecentage of her liver is affected along with her spine ( she has lost 4 inches in height, she was 5ft 11 inches tall ), her pelvis, the dctor agreed was like swiss cheese ( we do try to look at the lighter side ! )
All the drugs available I am sure they will offer however both my wife and I know time is not on our side.
Kind regards to all
Deirdre - are you on the trial being conducted by Dr Johann de Bono? I find the thought of giving pure androgens and oestrogens to hormone +ve pts counter productive as well but will definitely research that one - sounds interesting. You say when you were dx with secondaries you looked at everything available in the drug cupboard - seems like you will probably always know whats available and take an active part in planning your treatment - which is exactly what i want to do - all my doctors, nurses and radiology staff have been absolutely wonderful but i think for me to stay positive and fight this head on i need to stay informed and involved.
Thank you all so much
Deirdre - abiraterone was the 2nd drug i asked my onc about today - he was aware of it so asked him if i could be included in trials if he felt it suitable - will have to wait to see how femara goes 1st. Are you on any other hormone tx like the AIs or Tamoxifens? I really hope the abiraterone works for you. But can i just say i am delighted that you are getting so many of the drugs that are out there - to find out what works for you - thats whats important. I know they can judge best treatment on whether your tumor is ER+ve, PR+ve HER2+ve and now seemingly AR+ve - but obviously this is not accurate enough. Don't understand why the DNA of a tumor cannot be identified and therefore destroyed at this stage in cancer research. Please keep me posted on Abiraterone. Thanks again for post.
Debs - what a nightmare - thank God you are on Avastin. It goes back to we need to have all the drugs available to allow our oncologists to make the right decision with us for the best treatment. I phoned Westminster PCT today when i got home to see if there is any way i can apply for Avastin in advance of needing it - as i don't want to be in my 11th hour needing funding and having to fight for it at that stage! - seemingly not - i have to wait until its needed and then my consultant can put in a request to have me treated as a special case - which will be difficult as i am sure there are many before me and after me whos' cases are equally as special. Thanks for your story - its inspiring - have sugested that perhaps a visit to Richard and Judy might enhance my chances??!! 🙂
Terry - if the combo is not working for your wife maybe you should ask for a change in treatment. If she is hormone +ve maybe you should look at the abiraterone trial - see if its available in spain? Maybe the side effects is clouding your judgement - i didn't feel too hot on taxotere - aching body, low energy and as was on steroids had a nightmare time dealing with paranoia!! was better for 2nd dose as i was prepared. When do you go back to oncologist? Why not get a scan to see if any improvement or deterioration is evident. Best of luck to you both x
Thanks again for all your comments
My wife is on Avastin and Taxol here in Spain, we are not convinced it is worth the side effects so far, and progression seems the same as before. The side effects so far have been pretty hard.
Hi Maria, I am currently on a phase 1 trial for a drug called abiraterone. It's a hormonal drug that works higher up the chain of oestrogen production than the aromatase inhibitors such as arimidex and femara. It has already been trialled on men with prostate cancer and had good results - some men have been stable for over two years. They seem to think it will work with breast cancer but it will be a couple of months before I will know what it is doing with me. I've only been on it for a month.
I decided to go onto this trial because I really didn't want to have any more chemo just yet and, unlike many other phase 1 trials, there is some existing data about how effective it is on another cancer. I think, if it works, it will be another line of hormonal treatment for ER positive women.
There is more hormonal stuff going on too. Yesterday my consultant told me that they are now recycling hormonal treatments. He said they are also given pure oestrogen or pure androgens. Seems counter intuitive to me, when current treatments are designed to starve the body of oestrogen. But sounds hopeful nonetheless.
I was like you when first diagnosed with secondaries - I started to count all the drugs there are in the cupboard. It gave me a feeling of control - whether real or imagined.
I am so sorry you got so little time out of the combo treatment - i would have expected longer too. My secondaries are new - i asked for a CT scan to be done before i finished treatment for primary. I have only finished rads 2 days ago. But post op in november i had a surgical review andthe histology showed all LNs 18/18 were +ve - albeit encapsulated - but it freaked the hell out of me so they kindly agreed to scan me - and lo and behold mets were there on CT and MRI - but not on bone scan due to poor quality scan and they thought maybe as it was so early on. I had clear CT, MRI and bone scan before i started chemo on May 28th- so they were really not expecting this.
I agree with not getting carried away with hype - but at the same time i want to have the chance sooner rather than later to get some control on this. I am ER+ve (285) and would have expected the chemo to work as it appeared to put me into an early menopause.
What treatment are you on now? how is it going?
Hi Maria, I was on taxotere and avastin as part of the Phase 3 trial every three weeks from Feb to June 08. Then I stayed on Avastin alone until October 08 when scans showed progression. So I had nine months out of that regime. I was expecting more.
The consultant at the Marsden told me that they had been running their own head to head trials using taxotere alone against taxotere and avastin combination. They found that adding the avastin to the taxotere resulted in a longer progression free survival of a couple of weeks. It hardly makes it seem worth it, both financially (when Avastin currently costs many thousands of pounds per dose) and health wise - I had raised blood pressure, slow wound healing and was generally tired while I was on Avastin. I can understand, therefore, why NICE are not rushing to approve Avastin. On top of this, the manufacturers were asked to repeat their PHase 3 trial, so any information currently is given with a manufacturer's slant.
Furthermore, studies also show that it is more effective when given as a first line treatment for secondaries. I think if it is used later on it is not so effective. I understand you need to know what is available and have some idea as to what you might want to push for, but most of the doctors I have spoken to are not enthusiastic about Avastin. Sorry if it sounds like I am putting dampner on it, but I think that it's important not to get carried away with the hype.
The reaso i am keen to have Avastin is that there have been studies in the US that have showed that patients who received avastin in combination with taxol had significantly improved progression free survival of 11.4 months, compared to 6.11 months with taxol alone. Initial overall survival data is also promising and shows a trend towards improved overall survival. I don't think the combo has been used enough to say how much it may improve survival rates. I am 37yrs of age and really want to hammer this curse of a disease into a long remission. The fact that avastin (and other monoclonal antibodies) work by stopping formation of blood vessels needed for tumors to grow makes me think that on top of hormone treatment this is another way of preventing the cancer from growing and i want to throw everything at it. My consultant is actually in favour of Avastin - but did say there is some evidence to suggest that it might not be as effective in hormone +ve cancers, and although i would like to go ahead now and have avastin he has said that even if it were readily available or i had funding that he would not prescribe it "at this stage". However i had FEC and Taxotere to treat the primary - i had little to no shrinkage on FEC and this is a 1st line tx advocated by NICE - it just shows that we are all different and i want to do all i can to ensure that i give myself the best chance.
I understand what you are saying but as i say i want to give it my best shot and although as you say it probably won't help me - i'm a glass half full girl and would like to think it probably will help me
Thanks again for reply
My view on avastin is not widely shared by many people with cancer but for what its worth I'd say to you:
read the trial evidence for avastin in advanced breast cancer and you will find it is very disappointing and there is not evidence that avastin with taxol (for example) gives any improvement in overall survival than taxol alone. There is some evidence that avastin may improve progression free survival but even that is dubious. The preliminary results from the current taxotere/avastin trial at the Royal Marsden are disappointing.
NICE has not been able to discuss avastin for metastatic breast cancer because the maufacturers (Genotech/Roche) have not been able to provide sufficient dat/evidence.
You will read on sites like this about people who genuinely believe that avastin has prolonged their lives, but this is anecdotal evidence and it is impossible for an individual to claim that it was the avastin shrinking the tumours or the chmeotherapy they had to accompany avastin.
So I'd say....why are you wanting avastin particulary as your own oncologist is not recommending it? Don't agonise over a drug which probably won't help you anyway.
I have BC with bone mets. I am on zometa, zoladex and femara. I was wondering if anyone has been having Avastin on the NHS as a special case? If anyone has managed to find any independant bodies to apply to for funding of treatment?
I have spoken with my consultant re:Avastin and although he would not recommend it as treatment just yet has agreed that there will probably be a place for it down the road for me - however if NICE haven't got off their butts and agreed to it being prescribed for advanced BC then i would need to pay for it which would make it unattainable for me.
Any advice would be very welcome.