I'm just wondering if you got anywhere with getting a second opinion?
Rubbish that you can't get around because of the pain. Did bcn get you any pain relief? I hope it calms down soon.
Fabulous that you're off to Florida in October and you must be so proud of hubby. Ironic that he's working so hard for the NHS and they're working crap for you.
I'm not sure if the brca2 gene has any bearing on what type of breast cancer you would have, so if you are ER+ only, hormone therapy could work for you I think.
Love Tink x
Sorry its abit late been swimming tonight with the daughter got back at about nine then had a couple of lagers which I know I should'nt with me trying to loose weight. Is there quite a few women in the family that have come down with breast or ovarian cancer then? Your bone mets must be really bad to stop you going down stairs. Please seek second opinion before June. Every time I read what has been happening to you and how you have been treated I find it really upsetting. With living in Washington we must have missed most the the thunder storms last night as we only had one flash of lighting. Lucky you booking a holiday. Least you have something to look forward to. What have you done regarding insurance then?I need to get a holiday booked just want the reconstruction out of of the way first. I am wondering with you having the gene whether any of the hormone treatments will work long term. Must sign off now. Work in the morning. Take care. Linda
Just thought I would update as to what has been happening. Went to oncology yesterday. Results from scans were all OK no progression anywhere which is good I suppose. She said treatment must be working and will scan again in 3 or 4 months to make sure everything is the same. Have been feeling alot better on the lower doseage not as tired and skin has gone back to normal. Went to chemo unit to pick up tablets asked about blood results that were taken yesterday. All within normal range so on paper things seem to be going in the right direction. Me and my hubby met when I was 18 and he was 21 courted for 15 months then got married. Been married now for 41 years. Have you been to doctors yet? The site seems abit quiet again at the moment. Hows all the ladies doing on the EE treatment? Busy painting small bedroom at the moment so must go before light gets to bad. Take care Linda
How have you been today? Did you manage to get an appointment with your doctor regarding getting a second opinion. Wish it was next Monday when I get my results of my tests, it is always a worry when you have been for scans. Hubby does not like to come with me to hospital as then he would have to face the fact as to what is happening to me. Typical man burying head in sand. Forgot to mention got a letter through the post about me going for my pre op accessment on 31 May regarding my reconstruction which I was not happy. Hope the surgeon makes a better job this time. I often watch embarrassing bodies on TV I was tempted to go to the one in the town last week at Greys monument to see what they thought. Gorgous night think I will go out and get some gardening down. Take care Linda
Regarding kidney function think it must be everolimus which is causing the problem. Last year I had alot of protein in my urine which I think was caused by the Ibandronate which is the same as Zomata in tablet form. I have had 2 urine tests this year which showed it had gone down to normal. I was taken off that in October last year and put onto Denosumab which the new drug which you get by injection into the stomach. That drug can react with the EE so I have been taken off it temporarily. Pleased you have made a decision regarding a second opinion. Got grandkids overnight tonight so best not stay on too long. Take care Linda.
Spent whole day at hospital on Wednesday because my kidney function is not right I had to have 6 hours saline drip then scan at 4.30 which was running late got back to ward at 5.15 then went back on saline for a further 5 hours to make sure the dye was flushed out of my kidneys got home at 11. Should have taken yesterday work as I was really tired waiting round all day. Get results when I back to see oncologist on 12 May. Still keep feeling you have been really messed around with your hospital. I have no complaints about how I have been treat at my hospital. They always checking me out which I suppose is not a bad thing. Regarding they way you have treated is awful. As I said previously I had widespread mets ribs, spine, pelvis, hips might have some in head not sure as every pain I always think they have spread further mind working overtime. If you had similar treatment to me may be you could have had 4 good with no spread. Please seek second opinion before it is too late for them to do anything. You can either ask for a second opinion from the oncologist you are under if they won't go to your GP. As you know I asked for a second opinion from the breast consultant. He was more than happy to do this as it is your right. You take care try not to worry. Linda
Went to hospital Tuesday I saw registrar, never seen this one before, would be nice to have a bit more continuity. I said I was concerned drug wasn't working as nodules seem worse, before any change I am having a scan, she said it could be keeping me stable so best not to stop until scan results,makes sence I suppose.
Trouble is I must be running out of options so I hope this is working.
I think the treatment you are getting is disgraceful! You should change hospitals. Lots of people do and I'm sure you will be glad once you have done so.
Good luck. Love Sheila. Xx
How did you get on today at oncolgists. As you say the lower dosage is alot more manageable but does it work as well time will tell on the point. Back for more CT scans tomorrow to see whether the treatment is working or not fingers crossed. Must go to bed less I will be tired in the morning. Take care Linda
Hows is your chemo going? When are you finished? The reason why I work is to take my mind off my problems. My job is not that pressurised and I only work 31 hours which is not too bad. Looks like the treatment is working although it is only early days my tumor markers have gone down to 25 from 41 in December. The worse thing about this treament is fatigue, dry itchy skin and at first acne spots on arms and a couple on the face which have now gone since reducing the dose. Time will tell whether by reducing the dose it is working. Hope the treatment is going well and you have a good break from any chemo and just go onto hormones only. Take care Linda.
Sorry I have not been on for a few days hubby has had the internet disconnected. Regarding your treatment could you not ask for a second opinion at a different hospital either RVI or QE which have a good reputation regarding breast cancer. I know they are reluctant to do bone scans very often unless you complain about a new pain somewhere. I have not had any scans whats so ever since June 2012 until I questioned why my tumors markers were going up then they arranged for the scans that is when they said my hips had got worse. What the hospital say bone scans are very hard to read they cannot measure a tumor on the bone as easy for example on the liver that is why they don't do them very often. When I get chance I will look on the site you suggested in America. If you have only got mets in spine can't understand why they are refusing further treatment. When I was orginally diagnoised with mets in October 2009 mine was widespread but after chemo finished quite alot of the mets had disappeared. I wonder what position I would be now if they had only prescribed me hormones does not bear thinking about. Not sure whether I mentioned the last time I saw oncologist they would arrange for me to have a CT of my organs to see whether the treatment was working. I go for that tomorrow. I will let you know the outcome. Must go to bed now busy day tomorrow. Linda
Helen I was just ready your post about refusal to mx after diagnosed with secondaries. There is research which backs up evidence that removing the primary, in a secondary patient, has positive results on prognosis. I had a lump in the arpit which was basically all the lymph nodes becoming matted together. I had 9 months of chemo (fec followed by docetaxol) and 35 doses of rads and it only reduced marginally. I really had to push for surgery, in fact had to change hospitals. Even then the oncs were not really very encouraging but the surgeon was really keen to do the op and felt it would help in stropping further spread. It is the best thing I ever did. I have had no problems from the surgery apart from slight restriction when I try to reach up with that arm but more to the point it made me feel better in myself. I somehow felt I was conrtolling the damn cancer rather thai it controlling me. I have since had spread to the liver but it is not major and was caught early. I am now on capecitabine, which I am finding much easier than e/e. If you really want surgery keep pushing for it, being a secondary patient should not be a reason for not doing it.I do understand you need to be stable for the operation but if you are in that position go for it. xx
I have been on reduced dose for 2 months now, not so many side effects but I don't think its working so well, which isn't surprising I suppose. My skin nodules have come back they improved a lot on full dose but I couldn't live indeffinitly with how I felt on that. Back to hospital on Tuesday so will see what they say.
Hi ladies, I agree that it is a shame that not as many ladies now use this site. I found lots of information, support and hope when I was initially diagnosed from the site and always read everybodys posts. I dont use facebook but will look at Inspire site. Linda - I went onto a reduced dose - 10mg one day, 5 the next and found the side effects were manageable at this level so good luck - I do hope you get excellent results from the combination. I am really impressed that you have continued to work - I gave up my job which was quite pressurised and long hours a year after diagnosis but miss the normality it gives so think once I have finished the chemo I am on at the moment that will look for somehting part time to keep me busy.Jackie x
Not too far till June to find out how you are doing. Been on lower dosage for a week now. My skin seems alot better not as dry and touch wood no spots at moment. Time will tell it it works as well. I suppose in one respect side effects wen't too bad if I had to go back onto. They keep asking how my appetite is as that can be affected and have you lost weight. Appetite still the same and no not lost weight would like to loose a bit about half a stone would be nice which would take me back down to 10 and half which I was before I got diagnoised. I am 5ft 5" so not too back considering I am over 60. Can't see me getting down to 9 which I used to be until I turned 50. Never mind still here I suppose. Started back at work yesterday lots to catch up on working through my e-mails, least it has been a short week.
Sorry to pry when you got diagnoised they must have done the scans before they decided what treatment you should have I presume. Did they not suggest taking lump out then? Apart from me and you there does not seem many on this site now. The bone mets site there has been nothing since you replied on the 7 April. It seems weird as the site was always very active. Weather has been good today hopefully it will stay that way over the weekend. Take care Linda
Morning again Catlady
Just thought I would send a quick reply regarding you mentioned friends. You certainly find out who your friends are when you are diagnoised with this. Went out with same friends for over 6 years now I don't see them unless I text them first. What I always think no one knows what is round the corner. It could just as easily happen to them. I will treat them the same way. I know when I was going through treatment one of those so called friends used to ring up and say if I fancied going down to hers for a take a way give her a ring. The other one used to say to my daughter ask your mam to ring if she wants to chat. Which one is the poorly one me or them. Your friend sounds like mine best avoid her will only bring you down. Take care Linda
Went to oncology last Monday. I mentioned I am really tired all the time so they have reduced by dose to 5mg to see how I get on. Got results from bloods from chemo unit on Wednesday the tumour markers have gone down to 25 which is normal. On Monday they also took a chest xray to make sure chest is still clear will not get results until next time I go unless something shows up I presume. I did not find out I had secondaries until after I had the mastomy. Sometimes I wonder whether they would have done it if they had found them earlier. In one respect I would not of gone through the reconstruction which I am still not entirely happy with. Went for second opinion to the RVI. He agreed with me so I am now on the waiting list to get it sorted out I hope.
With being on holiday this week I have managed to get to Beamish on Tuesday with grand children and daughter. We picked a lovely day for it. Wednsday went swimming at the pool near the Stadium of Light which an olypmic size pool which was good. Been looking after grand kids overnight while daughter and her friend went out and her hubby went out with his friends. Better get ready as still in dressing gown. Take care Linda
I hope your markers continue to come down and you do not have to go on this awful treatment. Without reading through all the e-mails so at the time you were diagnoised did you have a mastomy and chemo like me or did they just put you on a hormone tablet in the hope that things would settle down which sounds like they are going in the right direction. If that is the case I wish they had done the same for for me instead of going through chemo and loosing my hair which was very thick and long. It is still long but nowhere near as thick as before which is very upsetting in itself. I did mention it awhile ago about this all they said if it had not thicken up by now it will not change. I will come back on tomorrow after I have been to oncology in the morning. Take care Linda.
Sorry I have not replied quicker to you. Strange how each hospital runs things differently. I have always had my bloods taken every 3 months that is how I knew markers were going up. Even at the beginning my markers were only 200. With new treatment I get them taken every month which is a bit of a pain as they can never find a vein. Busy looking after grand kids today so better not stay on too long as they now asking for lunch already. Take care Linda
The hospital where I go say 25 is normal. After had finished treatment in 2010 mine was down to 15 until January 2013 when it started to rise. 18 in Jan, 21 in April, 25 in July then 33 in October. At the moment mine is 35. I will find out on Monday whether the treatment is working. I always ask what my markers are even though they say alot of other things can effect them other than cancer. I am much happier when they were 15. Not been to Wales they it is a lovely place. The weather is glorious today. Watching grand kids today so better not stay on too long on computer. Take care Linda
How did you get at oncology today? Had yet another busy weekend. Daughter took me and my sister to Brown's Tea Rooms in Newcastle for champange high tea which was very nice. It is suprising how many people eat out on a Saturday afternoon. I am normally doing boring things like household chores. Got next week off work hopefully we should get something done in the garden weather permitting.
I am back at oncology next week for my monthly check up. I will see then whether the treatment is working if the tumour markers have come down from 41.
Regarding sleep normally I am OK if anything I sleep too much. Before this I could function on 6 hours without feeling wrecked at my desk. Hubby has just made coffee so better sign off now. Take care. Linda
Sorry I have not got back to sooner. After being at work feel really tired went to bed at 7 for the last couple of nights must be catch up from the weekend. I am not used to being tired all the time. Not been down to Cullercoats since I was was a child. We often used to go to the beach either Cullercoat or Seaton Sluice. You are really lucky to live at the coast. I was brought up in Gateshead and moved to Washington when we got married. It has improved a lot over the last 40 years. Not sure you are aware I was on the Nice website today regarding the E/E they don't approve it for its on breast cancer patients like us. We are just guinea pigs. Looking at the news today there is a lot of Sahara desert dust settled over the UK at the moment. Roll on the warm weather hopefully we should both feel a bit better although I doubt it with no end in sight with the treatment until it fails which could be this year next year. Time take my tablets again. I will try and pop on tomorrow night if not too tired. Take care and huge hugs to you as well. Linda
Don't like to pry but you must have been young to go through the menopause with you being prescribed letrozole which is normally given to people who have been through it. Mine did not end until I was 51.
Strange how each hospital the treatment is different. I had mastectomy first then chemo then radiotherapy. Been really busy this weekend granddaughters seventh birthday last Friday which I did a little party tea. Saturday went out for a meal with the son & his wife, daughter & her husband and the 2 grandchildren. All stopped over at his house came back lunchtime yesterday. I find one of the main side effects with EE is fatigue. Hubby still does not understand about how tired I get as I used to have such a lot of energy. Personnel got back to me regarding me attending hospital appointments and making the time up which unfortunately is still the case so what I have said is I would rather loose the money than have the added stress. Hubby works for the same company. He thinks I should make up the time even though I struggle to go work each day. To be honest I feel like going to the doctor and seeing if I can go on the sick which I get 24 weeks full pay. Regarding holidays don't think I will get anywhere this year can't be bothered with the hassle of insurance. When are you back to oncology? Wish the weather would cheer up maybe I would feel better. Take care Linda
Not that long ago since you were diagnosed with primary/secondary. Have you had chemo last year then?Sounds like you are in quite a bit of pain at the moment. As you know it was 4.1/2 years ago when I was diagnosed primary/secondary had chemo, radiotherapy. Finished that in Feb. 2010 been fine until January this year when they informed me things have got worse. Not in pain at moment touch wood do not need any pain relieve. I suppose really I am quite fortunate in that respect, but still does not stop me getting down especially when I have a drink and cry a lot then and just feel sorry for myself and say why me what have done to deserve this. I feel better at work it takes my mind off things. Are they still trying different hormone treatments on you at the moment? I noticed on previous e-mails you managed to go to America and mentioned you had a teenage son. You must only be young to be going through all things. My kids are grown up and married. Daughter has 2 children boy and a girl which I pick up from school on a Friday that is one good thing that has come out of this as I used to work full time until 2009. Regarding hubby he is feeling a bit better after bout of shingles. He is not normally poorly not been on sick before had to tell him how to go on. It is like my mum used to say you take good health for granted she lived until she was 82 never had to through what I have gone through don't know how she would have coped. Never thought I would get breast cancer with it not being in the family. Sorry I do like to ramble on a bit. Keep in touch. Take care Linda.