Breast Cancer Now Forum

Hi Di I think they all perform a similar role but there has been a trial comparing tabs and IV bisphos (BISMARK trial) and I think that the evidence is that IV is more effective. It often comes down to cost when deciding what to give you. Some people have a bad reaction to the IV type and others cannot swallow the tabs. It is just another thing to bear in mind if you feel that you need to change in a couple of years time. Hope that it is not too long before you can have your operation to strengthen your bones Barbara x ... View more

Hi Di Sorry your results were not as good as you had hoped but as you say, Tamoxifen works in a different way to Arimidex and it could help you to remain stable for a long time. You did not mention which bisphosphonates he has prescribed for you. I had Bonefos tablets for two years but after reading about Zometa I asked if he would change and he agreed. The NHS always wants Dr's to prescribe the cheapest but there is now evidence to show that the IV Bisphos actually kill cancer cells and help with pain management. Barbara x ... View more

Hi Di Sorry to hear your news about the spread to your bones and I hope that your results today do not show any further progression. I was first treated by Dr Brunt in 1993 when my primary tumour was dx and when three years ago I discovered that it had come back I was given an appointment with Dr Al Niamhi (Not sure of spelling) but you will know who he is but I asked to see Dr B again. He is one of the UK's top oncologists and I think that we should all be grateful that he chooses to stay in Staffordshire rather than defect to London. I have every faith in him and his team and I know that he is very sensitive to the needs of his patients. If you feel that you need more support have you thought of asking for a referral to the Dougie Mac Hospice day care.They are very supportive and I actually receive my intravenous bisphosphonate Zometa there which saves having to go to the hospital. Have you spoken to your GP about claiming DLA (don't ask Dr B because he is reluctant to sign the form for anyone who is not "terminal". I know that we tend to think of ourselves in this way as secondaries cannot be cured but Dr B does not think like that. I hope that you will continue to live with this disease for many years yet and I am sure that there are many treatments still available to you Good luck Barbara x ... View more

Hi Yes the dark nail varnish was to keep out the light. I had seen other posts on here where dark colours were best. My skin was also very sensitive to sunlight, not that we will be getting much of that now. My hair began to fall out after the second dose and so I asked my friend to shave the remaining clumps off. Like you I try to use dark humour and I could never get the hang of wearing scarves and so I mainly wore a wig whenever I went out but I did buy a couple of turbans, one to wear at night in bed because you don't realize how much heat you lose from your head until you are bald and another one to wear around the house You will start to feel more tired as the treatment goes on and I felt that for 4 months my life revolved around hospital appointments and blood tests. Good luck and I hope that you get a great result from the chemo Barbara x ... View more

Hi Tricia So pleased that your first Taxol went ok.Earlier this year I had 12 weekly doses and tolerated it quite well, I was never sick but my white cells were affected and so I had to have the Lenegrastim injections each time. My biggest problem was the peripheral neuropathy and I still have numb toes six months later. The skin on my heels cracked very badly but I used Udderley smooth cream to keep them moist.I painted my fingernails with a very dark colour to prevent them from lifting but unfortunately one nail did lift from the bed. Good luck with the treatment and I hope that it is successful for you Barbara x ... View more

Hi Mel Have just read your post and seen that you are being treated at the UHNS. I also live in Stoke and am under Dr Brunt who is a brilliant Oncologist.I can't pronounce the name of the other leading Oncologist but I understant he is also very good. I finished chemo in April so I haven't visited the new cancer ward yet but I wanted to wish you good luck with your treatment Barbara x ... View more

Hi Bahons Have just followed your post. If you look at the cancer research trials you will find this is a stage 2 trial ( I think it is trial 25) which ends next year. I have printed out the details to show to my oncologist when I see him next week. I'm not sure whether he will agree to me being entered and I would have to travel to Manchester but the hormonal drugs have now stopped working for me and if there is a chance, albeit a small one, of it being successful I am willing to try. Barbara ... View more

Hi Jayne Sorry you lost the connection again on Tuesday. Whenever it has happened to me I have never been unable to get back in so I know how frustrated you must have felt. It didn't log up on the screen that you were out but I think we all guessed that you must have been having "hokey cokey" problems again. Hope everything will be ok next week but we will make sure that if you go quiet again that we ask Abbey or Sophie to look into it Have a good weekend Barbara x ... View more

Hi Jayne I have been trawling through the hormonal site trying to find someone who is on Faslodex and yours is the only one that I can find.(I appreciate that it is over 12 months ago when you posted but I thought I would reply) I have had three injections so far and apart from pain where the injection is given I have had no other side effects. I am due to have a scan next month to see whether or not the Faslodex is working, I hope so because this is my final hormonal choice. Arimidex worked for a year followed by exemestane which was a non starter. Would love to hear from any others who may be on Faslodex Barbara x ... View more

HiKaren Sorry to read about the neutropenia.It always seems to happen to me at the weekend. It's not good enough though that you were left for an hour before being seen. The "red card" is given so that you are able to queue jump and I can honestly say that I have never waited that long. I understand that once the new oncology ward is open at the City General patients at risk will be referred directly to the ward and so avoid the horrid process of having to go to A & E first. Are you in contact with the Oncology cancer team (Debbie, Sharron and can't remember the others?)They are contacted via your out of hours district nurses number and you ask them to get one of the girls to ring you.They are lovely and they will not be happy that you were left waiting for so long. An alternative to remember is if you feel as though you are going neurtropenic during the day just go to the pathe lab and show your red card and they will take your bloods immediately. Anyway hope you are feeling better now, sorry about the hair loss, I did exactly the same when mine started to come out in clumps but to be honest, although I hate having no hair I don't think I could be bothered with washing,blow drying etc whilst dealing with the effects of chemo. Have a lovely Easter Barbara x ... View more

Hi Carol having dose 10 tomorrow and so because of Easter I will have ten days between the final two. Should finish on Friday 24th April if there are no problems with bloods. Think I might have to have another blood transfusion soon,I had one on the 12th March and for a couple of weeks my Hb was 12 which is great but it didn't last and today my Hb was only 9.7. It's not a problem but you are at the hospital all day cuz it takes 4 hours to give one unit. On the subject of your mammogram,If you are sent for under the "50 and over scheme" they normally write to you within a couple of weeks with the results. I had a mastectomy and so they only check to see if any spread into left breast.I assume you want to know if everything is ok in you cancer boob? Do you have a review before your chemo? if so mention it then and ask how long it will be. Good luck Hopefully we can meet up once I have some energy! Barbara x ... View more

Hi karen Pleased to hear that they have decided on a new treatment regime for you. I had the Epirubicin as part of the FEC ( don't be alarmed when you go for a wee afterwards and it is red!!!they will advise you to flush the toilet twice to get rid of the toxins) It should be kinder to you body so I hope that you are able to tolerate it. Are you having 6 doses, one every three weeks? Let us know how you go on Barbara x ... View more

Hi Karen Sorry you had such an horrendous time with your first chemo but the girls are very good and it sounds as though they acted promptly to get you back on track. I am no expert on chemos but the usual "lines" are to give anthracyclines first to see if they do the trick and then move onto the taxanes as a second line of treatment when and if they fail but obviously Dr al N had mixed the two together. Taxotere is a very hard chemo for some people to deal with and it can have some nasty side effects but it does work. I have to say I don't know of anyone who has had it as part of a combo. Did Dr al N explain to you why he was giving you this? I am having weekly Taxol which is part of the taxanes as unfortunately FEC didn't work for me (Apparently I am anthracycline resistant so I am hoping that this one works for a while for me) I am under Dr Brunt so have no idea of how patient friendly Dr N is but I always go to see him with a list of questions and he always answers and explains everything in detail. FEC is every three weeks (usually 6 doses) and apart from feeling very sick about 5 hours after treatment I dealt with it quite well so if that is your next option I hope you go on ok Good luck Barbara ... View more

Hi Karen Sorry you only had a visit rather than your chemo last week but good luck for Monday. The chemo staff are great and you will be well taken care of.At your first treament the nurse will go through the medication you have been prescribed and explain what it is for. you will probably have 1)Domperidone for sickness,2) Ondansetron which you know about,3) Metaclopromide which is an injection that has to be given by district nursing staff if you are sick once you get home and 4)Lenegrastim which is also an injection given by your district nurse for either 3 or 5 days to help your white cells to recover and prevent you from going neutropenic. I aalso had to take Ibuprofen for three days after chemo but I think this might depend on which chemo you have because I am not taking them this time Carol - I am doing ok thanks I have now had 8 doses and have four more to go. I had a scan last week and it shows a slight reduction in the size of the tumours in my liver which is good news. Afterwards I will start on Faslodex which is a new hormonal drug and I hope that I get a better response from that than I did from the Arimidex or Exemestane otherwise it is back to the chemo. Sorry to read your veins are not co-operating but I hope you are doing ok otherwise. Had a text from Oatcake about meeting up but want to leave it until after the chemo so it will probably be May time Hope everyone else is going on ok. Barbara x ... View more

Hi lipgloss Nice to see you posting again. Are you sure that Dr Brunt has suggested a hysterectomy and not an oopherectomy? This is a much less invasive treatment in which the overies are zapped and this brings on a premature menopause. I understand that this is the usual procedure offered to young women. Hope everything goes well for you Barbara x ... View more

Hi Cathy Brilliant news long may it last. My Onc has told me that the next treatment (if the Taxol works I assume) will be Faslodex.I have only read a couple of posts on here from girls on Faslodex so it will be nice to hear how you go on with it. Perhaps you could start a new thread. Have you been given much info about it? It is still in trials (SOFEA)until 2010 but I would love to hear that it works for a long time so that it delays a return to the dreaded chemo. Love Barbara x ... View more

Hi Girls I joined your club in January when I was told that the next chemo was Taxol. I have now had 4 of 12 and I seem to alternate between constipation and mild diarrhoea. I now have a fungal infection on my big toes and am taking antibiotics.I'm not sure if this is a side effect of the chemo. Last weeks blood test showed that I had been given too much Lenegrastim as my white cell count was very high so had a welcome break from the stuff but guess what? the count now is too low and so tomorrows treatment is delayed possibly until Friday. I am having a ct scan on the 11th March to see if it's working but I am not sure what the onc will be expecting. If tumours are still the same size is he likely to stop the Taxol. Can I ask those of you who have been on it for a while what your Onc's base their decisions to stop or continue on? I think that I am feeling aprehensive because the previous chemo failed and I agreed to this thinking that it would work for a while and allow me some "normality". Have forgotten what a normal life is like. thanks for listening Barbara x ... View more

Hi Carole Nice to see you again last week. What a small world fancy your son recognising Geoff from school! He did say what a nice lad he was. I have just had 4th Taxol and have got 8 more to go. I would love to meet up again but will wait until I have finished the chemo as it is every week and apart from the tiredness I am avoiding going out in case of infection. Hope that you coping with your return to work, it must be great to feel part of the real world again. Sorry to see that we have two new recruits but remember girls our hospital is a centre of excellence for breast cancer and Dr Brunt is one of the country's top oncologists. I was originally dx with bc in 1993 and the approach to treatments were very different then than they are now. It is often decided now to give a course of chemo in order to kill off any stray cells that may have escaped via the bloodstream in order to give patients a better chance of survival.Good luck to you both and I hope that you go on ok Erin - how are you doing? have you now got a decent covering of hair again. Mine has all gone again just as it was beginning to grow back. Ugh !!!! Barbara ... View more

Hi Mrs Blue I have taken oral bisphos for 2 years ( Bonefos) and the Chemist never had sufficient tablets in stock to supply me. They told me once that each tablet cost £10 and so they carried a limited amount. These were prescribed for me by the Oncologist and although I had to pay for my prescription prior to reaching 60, I never had a problem with my GP continuing to prescribe them. My understanding was that you GP is not allowed to refuse if your Oncologist/Specialist says you need a certain drug. Maybe PCT's operate to their own rules I don't know. Since my bone mets have progressed considerably I am now going to have IV bisphos, not sure if it will be 3 or 4 weekly but I hope that it stabilizes them. No idea whose budget it will come out of because I will be able to have the infusion at my local hospice. Barbara x ... View more

Hi Girls Details of the SOFEA trial can be found on the cancer research website. My understanding was that it was only available (unless you either paid or had private insurance) via the trial which is now a stage 3 trial. I think it ends in Dec 09. In the trial patients are randomised to either Faslodex and a placebo, Faslodex and Arimidex or Exemestane. Last year I was refused entry into the trial because the Nuffield hospital where I had my mastectomy op in 1993 have lost the tumour sample and without this confirmation of status I was ineligible. My Onc told me that I could pay for the treatment but after several meetings with the Nufffield, they have agreed to fund it. Spike - I read your posts regarding your treatment in Germany for the liver ablation but my onc will not agree to it. I do think now that I have too many lesions on the liver and so I am hoping that the Taxol will work and then Faslodex will keep the cancer stable. I will be over the moon if it works for the same length of time that it has for some of you. Can I ask if any of you had just one dose initially or did you receive a second one within the first month as a top up? Barbara x ... View more