As said in pevious discussion I have secondaries in my liver and lungs and was just diagnosed and so far have had one taxotere. My concern is that whilst reading the other discussions it has became clear to me that people on this site with private health care in my situation are being afvised that taxotere or taxol combined with Avastin is the best option available to them.
I am absolutely livid that my onc did not supply me with this information when she met me to discuss the fact it had spread, however I can appreciate that she advised me that the the best treatment available was taxotere (I just didn’t realise she was referring to the best treatment the NHS could give me and not necessarily the best treatment available) and unfortunately I did not ask her the right questions at the time or maybe she would have provided me with the information.
My onc is on holiday so I have a meeting with another onc tomorrow at 9.30am as i am due to get another taxotere at 10.30am tomorrow.
I would really appreciate any comments from you folks in relation to this especially regarding the following:-
If you have private health care and just been diagnosed with secondaries and have never already had a paclitaxel drug like taxotere or taxol what has you been advised is the best treatment for you and does it include avastin.
It would appear some NHS trust have agreed to provide taxotere/avastin already, if you are at a hospital run by the NHS and know that the trust is supplying it could you provdie me with the name of the hospital etc.
If you are in the NHS and have been allowed to purchase this drug to go along with your treatment and the NHS hospital have been happy to administer it for you instead of saying it’s all private or what we can offer you please let me know. Could you also let me know what the cost of this treatment is please(if that’s not to cheeky to ask) and where you are purchasing it from.
I would appreciate as many responses as possible so I can look at the full picture before I speak to the man tomorrow. Maybe I’m barking up the wrong tree any comments would be greatly appreciated. 1 to 1 of 1
From reading lots of avastin threads, if you pay for it yourself you have to pay for all treatments you recieve ie youd have to pay for the taxotere as well as.
Im sure there are more ladies out there with more experience.
I too am looking at avastin as a treatment that if able would love to try, Im on Xeloda at the moment and some ladies in the USA pair it with avastin with great results, it seems the norm there it makes my blood boil to think we are still trialing here when its so readily available over there bloody penny pinching government.
Well thanks for that, I will ask the onc tomorrow as the fact that it can be combined with Xeloda is news to me, however the way our NHS is run that could be years in coming. I have read some newspaper articles that suggest that some NHS hospital trusts are already allowing this, I don’t know what truth is in it hence the thread.
I have also read Debbie from Cornwalls story, she won her battle is is now receiving it on the NHS after a big fight, I appreciate that Debbie is further down the line than me and may have been running out of other options however I will be interested to find out the response for the members on this site.
Hi Diane,
Just spotted your post. I was diagnosed 3 weeks ago with secondaries in both lungs and lymphatic system. I am lucky to have BUPA through my husband’s work and started on fortnightly Avastin combined with weekly Taxol last week. I was told I wouldn’t have got Avastin on the NHS so am very grateful to be having it. I gather they are trialling it at the Royal Marsden in London but I don’t know where else.
I do feel it is bad that these things are not available to all and really am thankful to be able to try it.
Take care Diane and good luck with your oncologist.
If you look on CancerBackup or Cancer Research UK you can find details of hospitals trialling Avastin.
There can be serious side-effects from Avastin - I know of one user on these boards (sorry - hope your ears aren’t burning!) who has had to stop taking it partly due to kidney problems it may have caused. While I hope for it to be sanctioned for BC usage (another gun in the arsenal, I hope) it must be shown to be safe. As you are probably aware, the American FDA initially refused to approve Avastin on the grounds that the risks outweigh the benefits though this decision has since been overturned. So I doubt your onc was deliberately withholding information from you, the jury is still out on the Avastin debate.
I was diagnosed 2 weeks ago with invasive ductal with secondaries in lungs and liver. Not fully up to speed on drugs but am being treated at the Marsden on the NHS and start chemo tomorrow (TCH - Taxotere, Carboplatin, Herceptin) - I am er/pr- & HER2+. Am just wondering whether your onc’s decision has anything to do with your receptors or a medical reason? The reason I ask is because my onc told me that they had chosen this combo, which is a relatively new treatment regimen, because Taxotere avoids heart risks that you can get if you combine herceptin with anthrocyclines (no idea of spelling or brand name) and gets the same results. Anyway, i shall ask whether they offer Avastin/Taxotere when I’m there tomorrow & will report back.
Hi ladies, please forgive a newbie with primary BC entering this discussion. I opted for private treatment as lucky enough to have BUPA cover but have had only surgery and recon so far. Appt tomorrow for results and treatment plan and as I read more and more, and become increasingly hostile to the idea of being ‘messed around with’ any more, one question on my list is, what difference(s), if any, would there have been to date, and are there any differences in treatment regime OR options, between private and NHS? I wish I’d gone into this in far more detail prior to going in for surgery but better late than never. The actual regime offered to me may not include the drugs you are discussing here but in principle, I’ll let you know what I am told. Lyn xx
Hi Palomino98,
As I mentioned in my earlier post I too have BUPA insurance which I didn’t have on diagnosis of my primary 5 years ago. It is early days for me but regarding the possible difference between private and NHS options which is a thorny issue all I know is that when I was on the NHS I was not offered any scans and then had a “routine” CT scan in Feb this year, privately which was abnormal (I have no symptoms whatsoever). I then had a PET scan which I definitely wouldn’t have got on the NHS, was told by my oncologist I would have had to wait a further 8 weeks (instead of 2 days)to have a further CT scan which would have been awful to wait that long not knowing. Also. I know I wouldn’t have been put on Avastin on the NHS and I’m also to have 8 weekly PET scans (I have to trek to London as no PET scanners in Wales)which again I wouldn’t have on the NHS. I’m not trying to rub anyone’s nose in it who is on the NHS as I have never faulted my treatment but these are just my observations from this experience this time and who knows whether the outcome will or would be any different on a different regime. It is obviously early days for Avastin but I’m willing to give it a go.
Thanks for all your comments, my breast cnacer is triple negative therefore herceptin or hormone tablet can tot slow it down at all. That’s why this drug that can give me a longer cancer free prognosis would be good. I know all the reports are not great on it. I just can’t get it out of my mind that it is being offered to private care patients and not those on the NHS - I only want the best treatment available for me adn a bit worried that this is not what i am being offered at the moment.
I have had great care by the NHS, they found the lump in my chest on the Tuesday did a biopsy, had me back for the results on the Thursday, bone scan Friday, CT sacn Monday, onc Tuesday and I started chemo the following Wednesday. I cannot fault the level of attention and care I have had throughout the whole serve and commend them for it. It’s just a pity when it goes further up to the purse strings in a farse.
I can’t believe that there was an extentsive trial carried out on mixing taxanes with avastin from 2001 to 2004 and here we are 2008 starting to do trials in the UK. I was told not to surf the internet looking for medicines abroad that would be better, if they work I was assured that the NHS would be using them. This would appear not to be the case with this drug and it scares me to think of how many more drugs take forever and day to be given permission to be used by the NHS. Precious time that some of could do without having to wait for.
I also believe that when hospitals are doing trials that the trials should all become available UK wide (since we’ve waited longer to get here in the first place) We live in a technology where distance should not be an excuse we live in the 21st century where we can communicate with people 24/7 the results could all be pulled together and analysed at the hospital leading on the trial. Again I think that comes down to money Marsden are doing a trial with Taxotere and Avastin at the moment, I read somewhere that 8 people are on it - why couldn’t I have been offered that trial and the information they required be filled in and completed in Edinburgh by their professional staff that do trials all the time as well. Surely that would give us all at least an opportunity to decide if we wanted to participate or not.
Sorry that’s my rant over, I am going for my chemo again today so started the steroids yesterday 8 of them and have been up since about 4.45am LOL The onc won’t get a word in edge ways when I meet him today I wonder if he’s ready for a steroid, livid mad nutter!!!
First of all not all private medical insurance is the same. I very much doubt that the company I am insured with (AXA PPP) would fund avastin (they made a fuss recently about funding carboplatin and gemzar because not on NICE list of approved regimes for advanced bc)
Secondly, just wanted to urge some caution on avastin…it is not the best thing since sliced bead (or rather since herecptin…which for her2++ cancer really is a breakthrough). I agree with the comments jennywren has made. There are doubts about the safety of avastin and the trials show improvements in disease free survival, not in disaese related symptoms or overall survival (mind you I think we need a debate on the relative importance of these three categories.)
Whether or not a PCT/Trust will fund Avastin is up to them. You can apply for the drug, provided your cons recommends it. If your cons can provide evidence that Avastin is suitable and needed the PCT will look at your case and make a decision. They don’t have to wait for N ICE approval and can pay for drugs that are off licence. So good luck, get your ONC on board and get him to fight for you. I began the campaign to get Avastin, which benefited Debbie but unfortunately my circumstances changed and I have not been able to get it. I was on Taxol and wanted to add Avastin, unfortunately my cancer progressed and I had to stop Taxol, so I missed my window of opportunity. I am still fighting for the right to co-pay for treatment , ie pay for Avastin without having to pay for all my treatment. I have not given up and if my circumstances change again I will be re-appltyng for Avastin as I have discovered that it is being used with other drugs now. I am afraid that this issues is one that won’t go away and you have to take on the fight. Go to the media and make a fuss if the PCT/Trust are not helpful. Contact me if you want to know what I have ben able to achieve. I don’t suppose the moderator will want me posting the details here. Remember, united we stand, divided we fall. Good luck, keep well but don’t over tire yourself.
I was diagnosed last June with liver secondaries and was offered Taxol and Avastin (paid for privately as my husband has health insurance organised through work). My onc said he felt this was the best treatment available though this was obviously before the recent concerns were raised. He definitely wanted to combine it with Taxol as that was the published trial, though he did say he would not have selected Taxol otherwise. So it is interesting that people now are having it with taxotere and indeed other non-taxane chemos. My insurance company though would not pay for Avastin to continue after 6 months - my onc would have liked to have continued with it for a further 6 months (in a similar way to Herceptin treatment).
Joolzie: because you are HER2 my understanding is that Herceptin would obviously be the best choice for you. Avastin and Herceptin are both monoclonal antibodies but whereas Herceptin is designed to stick to the HER2 receptors/proteins, Avastin targets the protein VEGF. For anyone HER2+, Herceptin will work better than Avastin I think. But for those of us who are HER2-, Avastin may be an option.
As Jenny and JaneRA have said though, it really isn’t clear whether the benefits Avastin offers outweigh the risks. My own feeling is that like so many of these trials they are not really very specific in terms of the people they take onto it. So might Avastin work better for those with liver mets than (say) those with lung? Also I believe there is some evidence (but couldn’t find the link earlier) that those at most risk are the older age group. However it doesn’t (as JaneRA has said) seem to have the same benefits as Herceptin though I think this is what was hoped for when it first appeared - ie that it could do for HER2- people, what Herceptin has done for HER2+ ones. Jury is definitely still out!!
Hope your chemo went ok this morning Diane and that you had a productive discussion with the onc.
Hi Diane
I had Taxotere + Avastin through BUPA because of my job. Avastin was a second choice - my onc would have preferred herceptin but I am HER2-. I have had a good response to the chemo but it is impossible to say whether this is down to one drug or another - or possibly the combination. I can confirm the seriousness of the potential side effects though - I had to have very extensive heart function tests before they decided to go ahead with the Avastin. It’s all pretty experimental at the moment, though like you I was happy to take a chance it. We want as many chances as possible on our side! I also agree with the burning injustice of one rule for some and one for the others.
Hope your onc was able to come up with something decent for you
I asked my Onc about Avastin as I had started taxol and she said that she was not unduely concerned that it wasnt available as there are plenty more proven treatment s available.
Kay - interesting that your onc wouldnt have chosen taxol if he wasnt giving the Anvastin whereas taxol was my onc 1st choice. Shows that there doesn’t seem to be any standardised approach.
Thanks for you comments, Mills you seemed have looked into this very well. Would you give me an update on what you have found out obviously through discussions with you onc etc and could also let me know how long you have secondaries for and what your situation is at the moment - if that’s okay.
The stand in onc explained to me yesterday that there have been trials combining taxotere with avastin all over the UK that he seems to think the drug company will be submitting the findings in about June this year - however it can take from 8 months to a year to be approved or indeed rejected by NICE. The current study I looked into carried out in America over 722 woman was with Taxol not Taxotere (which is the stonger of the two withing that calss of chemos) so there is hope that the taxotere option may turn out to even keep the progression of the cancer returning away even longer that taxol does. The trial mentioned above took all people that had secondary breast cancer therefore they reported that it was difficult to determine the results about if it prolonged the survival rate. However my onc says that has definitely been proven and his point was that you may get extra time at the beginning but when you require your next chemo it seems to not be as effective therefore overtime it seems to claw the time you have been progression free back.
I did ask if because avastin was not a chemo if this could be administer again and he said yes it could be, infact the trial in America should great results for people who had even had taxol, or epi.cmf ect. with the study showing an average of if you took taxol again by itself an average time with progression fo 5 months compared to about 13months if you got the aviston as well. (roughly not got the study in front of me at the moment)
The study also showed that people with Triple Negative seemed to get good results.
I have another meeting in about two weeks with my own onc when she returns from her holiday and am going to ask her outright if it was here in my position what treatment would she want - regardless of money and see what answer I receive.
I am also going to question things like the trials in this country have been carried out on patients who have just been diagnosed with secondary breast cancer and have never received a taxane drug before. Obviously if this is the same as the results with Taxol it does not increase the years of survival - however if that is the case is not important that we now trial this drug on people like for example Debbie Hirst who is running out of options and her onc and mine when i said it backed it up that when using this drug they have seen the tumour literally melt before there very eyes. This would have to question then if we use it when options are running out it would be more beneficial that at the beginning and must increase your survival time. It may be that it can be used in both cases as my onc did suggest that it could be used more that once and there are a lot of similar drugs coming through.
It really bugs me that trials are being done worldwide on this drug dating back to 2001 and yet here we are in 2008 still trialing it in this country - all be it with taxotere which may prove to be better. But i don’t see if it is licensed to be used why we cannot trust the well reported trial in other parts of the world instead of being so far up our own a**ses that we feel the need to do it our self. We live in a global society at the moment and if Europe and America have studied taxol/avastin combined to give good results then the intelligent people at the top in Nice should study these trials results and make a decision based on the very detailed reports not try and prolong the time they can get away without prescribing it. Fair enough with the taxotere that has just started being trialled but we should be able to it with Taxol right now!
My dilemma is even if I get to pay for it private it’s how much money I am prepared to spend when the outcome does not increase a longer survival and I am very well at the moment. I kind of feel I will have no choice but to keep my pennies for the day when I may be in a situation like Debbie when it was a case of survival.
Mills your knowledge, and anybody else’s would be widely appreciated - it will give me a bit more ammo when I meet my consultant in a couple of weeks.
I know that my experience has no relevance in terms of Avastin and related drugs discussed on this thread, but at my results appt yesterday I asked my conslt to define any differences between NHS and the BUPA-funded early treatment I have had, and the regimen they are recommending, and he assures me there is absolutely no difference EXCEPT that under the NHS I would have been unlikely to have the two surgeons that operated on me working in theatre together (senior conslt breast surgeon and the senior conslt plastic surgeon). Some way down the line I may be in the position some of you have already reached - may I wish you all the very best success and satisfaction with your treatment options, whatever decisions are made.
Diane 1W
I share your frustation. Keeping us going when we are fit is better than waiting for a crisis, unfortunately that is not NHS Policy. Avastin does increase the length of time between progression. There a no trails that I know of carried out on women at my stage, so how can they say it won’t work for us. We should be included in trials The trials in this country are not phase 111, ie excludes those of us with secondary cancer that have had previous chemotherapy. I agree, if it is proven in another country, why re-invent wheel!!! Our frustration at not having access to the latest drugs is shared by the drug companies who have just announced that if the NHS and NICE do not get their act together, buy/use the drugs that are already available/proven, they will take the business to another country. My status is that I have lots of mets in spine/hips/femurs/ribs/liver. I am waitn for a brain scan to see it it has spread to my skull/brain. I asked for Avastin when I was on Taxol but was redfused and was not allowed to co-pay. Taxol then stopped working, cancer progressed and I was switched to capciterbine. So far it seems to be working. I have recently learned that Avastin is now given in combination with lots of other chemo drugs and this is something that I am keeping an interest in as I feel that I will need Avastin in he near future. Its a post code lottery as to whether your Trust/PCT will let you have it. My message is to make a fuss and get as much media support as you can. I hate to sound cynical but NHS ONCs must find it difficuly to recommend drugs not paid for by the NHS, are they going to upset their employers!!. If you avhe a good ONC, ask him to apply to the PCT for funding and see what happens, if the refuse, appeal. Sorry if this sounds like fighting talk but unfortunately nothing is going to change unless we make a fuss and fight. Good luck. Keep well
Today I had my 6th Taxol and fourth Avastin all went well.
Before Avastin, checks are made on urine and blood pressure; questions are asked re tiredness and breathlessness if satisfactory, treatment starts. For my first three treatment I was in the Friday clinic due to Good Friday break the second cycle moved to Thursday clinic. I am trying to find out from the other patients if they are funded by the trust or on the trial, but as they know about my campaign they are a little more discreet I think as time goes on this will change and I will have a bit more info to report back. I have not been able to speak due to radiotherapy so that hasn’t helped. A few months ago I asked my onc if I were a private patient would he advise Avastin he answered YES.
Just one more thing - when I was told my condition was terminal and didn’t look good I made notes asked questions and kept a record of the onc’s answers. This has proved invaluable its all there and dated. I would have been lost without it. If you ask a direct question they have to answer. It will be four years in May and I have asked a bloody lot of questions many of which I had forgotten until I checked my book!