funding issues???

Hi ladies, sorry to bother you ,but i am about to explode. Just come back from hospital where my sister was due to have her 7th round of halaven.The nurses were very appologetic, could not give her her chemo, and said that funding had run out and that my sisters consultant wanted to wait until after scans to decide next treatment!!!. NO WAY !!. She hasnt got a scan for another week and then her oncologist is on holiday for 2 weeks. My sister is already concerned as her tumor markers went up last cycle . Halaven has worked well for my sister, brought her markers right down and improved her symptons. The consultant had said, he would not change treatment on markers alone, he would wait for scans. Really worried that my sisters symptons,pain will increase again as it has, every other time she has stopped one treatment and been waiting to start another. Her oncologist is so laid back. He ought to be in her f…ing position and know how it feels. To make matters worse i have read on this site that halaven can be carried on ,and indeed is depending on what hospital you are being treated at.I am so angry ,scared and frustrated right know. Tried to phone PALS ,but they are closed till monday. Chemo nurses were also concerned about her being left so long. They will speak to him monday morning. It is not fair,Dont need this right now .sorry for the rant xxx

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Hi Flo 12 can understand your frustration,not a lot I can suggestg other than would your sister consider a different onc.I had an onc who was laid back and could not understand me wanting aggresive treatment so I not only changed onc but also hospital.I would suggest a second opinion but as this would delay her treatment it would be a risk you would have to consider.One of the reasons I changed my hospital was because I felt decisions being made were more finance related than whether or not it was the best treatment.
Re tumour markers,my treatment at 2 different hospitals have never been related to tumour markers.many ons do not use them as they consider them unreliable as other things,rather than progression,can cause them to rise.I hope her scan goes ok, I have had treatments stopped after scans but rarely before as it is not easy to say how it is working without the scan results.

Lxx

thanks lucinda, we have had a second opinion at the royal marsden in the past (paid private) and i think this is what we will do now. london is 3 hours away so don,t feel that we can do that as a perminant option. I feel her oncologist just goes with the bog standard protocols and doesnt understand that she wants to be treated agressively , in fact we have had an arguement once before over the pretty much the same thing. The trouble is ,he says he is going to arrange scans ,then forgets until you remind him. he backtracks on what he says.On this occassion despite her tumor markers going up for the first time on this treatment he said he would not change her treatment on tumours markers alone. (good). However when she went to the chemo ward one week later, the nurses said he hadnt prescribed it due to funding and she would have to wait until after her scans for him to decide what to do.(NOT good).infact he is away on holiday for 2 weeks ,so she will be left without treatment until the begining of april?.I know cromercrab and others have been allowed to continue Halaven, in America some ladies have been on it a year.The other oncologists at our local hospital are not ideal, None of them specialize in breast cancer. Just want a suitable plan in place, not to be left in the dark and not abandoned, I am going to phone PALS on monday for advice. thanks for listening. I hope your treatment is going well right now. best wishes xx

Flo I actually go to Royal Marden Sutton for my treatment,following a second opinion my gp arranged for me I asked to stay there for my treatment.It is a 3 hor round trip but worth the effort.I have just started on everolimus/exestemane combo and hoping it lives up to it’s reputation.i hope you get some results with PALS on monday.

L xx

Thanks lucinda, think my sister feels very disheartened right now , have see her tonight , she feels that she is becoming more breathless again. Not happy to wait 4 weeks or more for next treatment plan . She is phoning ward tomorrow. I will be putting my concerns in writing . They may pay more attention. Will go down to London as soon as we can get more scans and results for second opinion , bloody annoying ! Think my sister would be happier to travel to another hospital and transfer her treatment , as we have both lost confidence at the one we are at . Very cross, especially as I have worked for the same trust for 25 years. My opinions will be voiced, This is so unfair. Standards of care should be excellent for all, it is so wrong how some get access for treatments and some consultants don’t know what you are talking about ! . Rant over , thanks a lot lucinda . Best wishes xxx