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anyone on everolimus/exestamene got advice on se's ?

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Re: anyone on everolimus/exestamene got advice on se's ?

Im not on EE but am a BRCA 2 carrier..... I had hormone pos bc then TNBC..... Its more common to get ER+ BC in BRCA 2 about 80% are ER+ but opposite with BRCA 1 80% are TNBC.

Its the hormonal status not the brca status that keeps things under control.

Sorry you have also had to deal with some poor nursing..... We arent all bad.... And im very pro nursing so forgive my bias.... But there are lots of pressures on nurses to complete paperwork and audits and time constraints and resources etc and just not enough nurses to do the job. Xxxx
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Re: anyone on everolimus/exestamene got advice on se's ?

Hi
How is it going on EE? I am in the process of changing to this treatment but am anxious about the side affects and how debilitating they appear for those on it. 🙂

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Tink,thank you,yes,it's very ironic lol. Very proud of him,I do think our NHS is great but I do find with a lot of nurses it's just a job and not a vocation and bedside manners have gone out the window and you become an NHS number & not a person with feelings anymore.
I'm waiting to see what onc says in June I'm also telling him about lack of care at my hospital !he comes from another,if I move hospitals I probably get him again lol .then I'm back to my GP to tell him I'm not happy with care.
Yes,I'm ER+
Yes,I've got plenty of pills but they always make me sick(oromorph &zomorph) and keeping topped up on normal pills at moment which is helping & it's settling down.
I'm praying I'll keep well until October for Florida.
Hope you are doing okay Tink and treatments are being kind to you but not to C. Take care & huge hugs,Helen xxxxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Hi Helen,

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,yes,my dad's mum & his three sisters all has bilateral BC & dies in early 40s. So I got tested (it's just taken nearly a year to get tested &results & it wasn't even at NTGH lol) and I'm a carrier. My sister is now getting tested. My sons still not sure if he wants too.
Yikes,do hormones not work if you are a carrier. It does make sense as non are working for me!
It will be the same as last time no insurance apart from lost bags lol as I couldn't get anyone to insure me with MBC & USA!
Back not too bad today so at least I can potter & I'm downstairs .so hopefully it will settle down again.
Hubby was at House of Lords yesterday being thanked for the work he's done in NHS,which was very nice. And he did bring me box of chocs from there lol.
Have you got any further forward with your reconstruction or a date?
At least you did some swimming before lagers lol you worked them off lol.
Take care & huge hugs,Helen xxxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Helen

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi.linda,yippee,that's great news,no progression. It looks like it's working and lower dose is helping you with SEs.
Just found out I carry the Brca2 gene. So I'm going to tell onc in June I'm having ovaries out.because of ovarian cancer risk as with my luck I'll get that too.
Back very painful today so never even got out to see sun or even down stairs. So the last few days haven't been a barrel of laughs.
But eventually I'm getting an ultra sound on breast as new lump has grown huge in last few weeks. Second time I've toldBCN,eventually she's doing something it's only taken her 6 weeks,lol!
Yes,it's quiet again.only us old married women on here lol.
But on a happier note I've booked a trip to florida in October so I have to stay well till then & then break news to onc in June. Don't think he'll be happy! But,after awful week we need something as a family to look forward to.
Hope your not getting the thunder storms we are at the moment,it's soooo dark outside. You'll not get your painting done.
Take care &huge hugs,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Helen

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,still haven't seen GP but I go to see him soon ,regarding a painful ear!
Yes,I know what you mean about waiting for results,it just chews you up. I also know what you mean about hubby's,mine keeps saying your be okay though. I don't think he wants to come to terms with I'll not be here. We have been together since I was 16! Celebrating 30 years of marriage in June.(married at18)
Glad you have your appointment and it's not too long a wait for your operation. oh,you would be brave to go on embarrassing bodies,I watch it too. But I could never show my bits on TV lol.
Yes,it's lovely tonight. I'm hardening my plants off ready for planting out. Enjoy your gardening ,take care,speak soon,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Helen

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,hopefully coming off denosumab will have you sorted . I've not had any experience of it as on I'm IV zometa. It's like playing Russian roulette with the drugs they give to us.
Enjoy your grand kids and have fun,huge hugs,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

 

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.

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,OMG! What a day you had on Wednesday! Poor you,yes,you should have taken a day off you must have been exhausted . Is it the zometa or the EE that's put your kidney function out ? Hopefully they'll get if sorted for you. I know the zometa can cause problems.
I'm going to see if I can move to the freeman in Newcastle from north tyneside general. Im one word they are appalling !
Well I hope you are set for the Bank holiday and it's supposed to be nice weather in the NE ,yippee! I'm off to have a girly night in with my sister and bottle of Prosecco. They I'm going to Wallington Hall ( getting my money's worth out of the national trust membership ,lol)
Well,I'll say goodnight as hubby waiting to take me to sisters.
Huge hugs& take care,Helen xxxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,desi,thanks,I'm going to see my GP and ask to change hospitals.
Huge hugs,Helen xxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Hi Helen sorry you're having such a rubbish time with your treatment. I asked my GP the other day how easy it was to get a second opinion and said no problem I can even choose who I want to do it and he would send all relevant details to them, maybe that could be an option for you. Some of the ladies on Facebook have great faith in a particular proffessor at the Royal Marsden and you wouldn't have actually go there for your treatment just request there opinion on what's happening then you would have something to challenge your docs with. Xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,jan,I know what they mean but it doesn't help with anxiety while you are waiting for scan to see if all is okay. Fingers crossed for you,huge hugs,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening all

 

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.

 

Best wishes

 

Jan

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Sheila ,thanks,feel totally deflated by whole place. It's a battle every time I go with them. All I want is to get my treatment without the added stress of no medical support and with staff that are at times incompetent and uncaring .
Feeling very down today.
Huge hugs to you,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Hi Helen,

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,good luck with your scan tomorrow,fingers crossed.
I've just said to my hubby I want to change hospitals as the standard of care at mine is shocking,BCN,who never returns calls,bloods not sent off,bullying from onc nurses,mammograms that have gone "missing" an onc who until last time hadn't even looked at original scans.
My mets are in spine(top,bottom) pelvis and ribs. My markers have gone up every month for 10 months and still won't do CT scan.
Yesterday found out markers have gone up nearly 80 points so it looks like the letrozole only worked for 3weeks,totally awful day (rang to talk to BCN ,who wasn't there & hasn't returned phone call yet again)
What worrying me is I haven't had a single treatment work for me and what has the cancer been doing unchecked for 10 month in rest of body.The tumour in breast is now poking through breast and a new lump has appeared! So it's been growing but anywhere else is anyone's guess! Sorry for my rant having a feel sorry for myself day.
Thinking of you today,huge hugs,Helen xxxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Janice

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Jackie

 

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.

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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,thanks lucinda,I know I do get the impressing its oh what's the point from them. But I'm seeing him in June so I'll nag him again. I just think it's my hospital ,the care is shocking no wonder it has such a bad name. But I would feel happier if they took the primary away.but I don't seem to have any say in my treatment. Still haven't had a scan after nearly a year from diagnosis . Sick of asking for one.
Thank you for telling me about your experience ,it has helped me be more determined to go for it. Glad your treatment is easier for you and long,long may it kick the squatters butts.
Huge hugs,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi all

 

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.

 

Best wishes.

 

Jan

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,jackie,yes,it's very quiet on here ,not the same anymore. A lot of the experienced ladies don't post. I miss Belinda's posts as she was a long term ER+ survivor and it always gave me hope reading them. Hopefully they will pop in just to let us know they are still well.
Huge hugs,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,oh yack to going back to work but at least a short week and May Day bank holiday coming up !
glad reduced dose is better for you ,long may it last.
My appetite went when I was on tamoxifen as it made me so sickly,I lost a stone and a half on it.every cloud ....
I went to hospital on the Wednesday and was told I had BC from ultrasound I had that day and I would be have mx .and also CT & bone scan. Was told to come back following week for results of biopsy . Meanwhile got CT scan on the Friday and BC nurse told me I had spine mets. So when I went back on the Wednesday doc said it was pointless doing a mx now. Biopsy said I was ER+ so hence the hormones. The onc who I'm under now is the one I'm asking about the mastectomy.
I know what you mean about this site,everyone is leaving for Facebook sites I think. There only seams to be a couple of us still posting,such a shame. I've joined inspire an American site just for secondary BC and it's really good,lots of information,but it's taken me a while to navigate it lol. I'm useless with computers(iPad which I use now) I still use my name 2catlady on there if you fancy having a look. (I've actually managed to put a photo of myself on!!think it was a fluke with my skills)You have to be a member to get on to it as you can make your comments only for members to read.There's a couple of people from here on there too,who use the same names.and have said hello to me. Speak soon ,
Take care and huge hugs,Helen xxxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,wow ,that's fantastic news regarding markers. Hopefully a reduced dose may be easier to tolorate .Celebrate and eat an Easter egg,that's what I'd do lol.
You've had fab weather for beamish,I love going there,I like the old fashioned sweet shop!!
I'm still in two minds if a mastectomy is the way to go for me,if I ever become stable (hopefully when I see him in June) he will discuss it. I don't blame you getting a second opinion ,and getting your reconstruction sorted if you are not happy with the results.
Oh yes,you certainly find out who your friends are. I have some wonderful friends who I don't know what I would have done without them.They keep me sane! We spend so much time at m&s at the silverlink ,I'm sure they think I'm the leader of a shoplifting gang!!
Well,I'm off to feed my boys,so enjoy the rest of the sun.
Take care,huge hugs,Helen xxx
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Re: anyone on everolimus/exestamene got advice on see's ?

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Morning Catlady

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,are you okay?
Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda, good luck with the oncologist , hoping your treatment is working well for you.
I've,never had a mastectomy or chemo. I was put on tamoxifen straight away but it did nothing and markers kept rising so 19 weeks ago I was put on letrozole which seemed to be failing as well until last week !!
Yes,losing hair is very upsetting,I think that's the bit I'm dreading the most when I do chemo. Even with a secondary diagnosis ! A "friend" did say to me it will be okay for you as you had short hair when you were younger!! Oh yes that helps! Not! I have a shoulder length bob at the moment. Same"friend" said oh I thought you would be wasting away by now after I hadn't seen her in a few months. I try to avoid this "friend" now!
Take care and huge hugs,Helen xxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

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.

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Re: anyone on everolimus/exestamene got advice on see's ?

Morning,Linda,yes,all hospitals and even oncs in hospitals do things differently,and we are their guinea pigs. My markers were only 28 when I was diagnosed with primary and bone mets at same time.They have gone up a 100 every three weeks for the 10 month until they were in 1000s. But all of a sudden dropped 100! So hopefully when I go in just over two weeks they are down again.
Have a great day with your grand kids and enjoy the sun.
Take care and huge hugs,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Morning Catlady

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Morning Desi

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,desi,thank you. I'm a bit scared to get my hopes up until next markers in three weeks,as I've emotionally crashed before when I thought things working and they haven't been.
Have a fantastic time in Wales with hopefully lots of sunshine,take care and huge hugs,Helen xxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Hi Helen I was wondering also how it had gone for you as you say hopefully Letrozole has kicked in and you can remain on that for some good time. Best wishes and good luck xx

Linda could I ask what the tumour marker level is that takes it into abnormal? Mine last time was 32 which the onc said was normal but wondering how close to the top end that is. Hope you enjoy your time off I'm going to Wales for a week on the 19th and hoping for some sunshine or just dry would be good! Xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,oh that sounds lovely, champagne high tea.
Well,onc and myself had total shock yesterday. Markers were down 100 so are now in 900 ! They have gone up 100 every month since diagnosis (. I did have small coming down once of 9 in jan .I was happy but onc said it was nothing to get excited about and he didn't think letrozole was working) so we were all ready to change treatments yesterday to EE .so he's now keeping me on letrozole for two more months to make sure markers coming down is not a fluke. Then at last he said he'll scan me as it will be a year since I've had a scan and keep me on L or change to EE. If I hadn't decided to have bloods taken on Thursday as I was seeing him on Monday after zometa he would have changed treatments. Hopefully it's taken letrozole 18 weeks to kick in and I'm praying markers are not a fluke.
Hopefully we will get some sunshine next week for your week off,as I'm planning to do some pottering in my garden too. It is supposed to be sunny today,not a help if you are at work though.
Good luck next week at oncs and my fingers are crossed your markers are down.
Take care and huge hugs,Helen xxxxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,I know what you mean about being tired ,I used to have so much energy ,now I'm totally shattered. But a lot is down to not sleeping well.
No,I didn't know that about EE ! I was reading posts on the American website and they are always mentioning AA trials ( they call our EE AA) and I did think, trials? Is that not a treatment!?
Well,guinea pigs are very sweet and tough little critters ,just like all of us lol.
I've lived in Cullercoats since I was a little girl. It hasn't changed much apart from a couple of nice coffee shops. Still as peaceful as ever ,and lovely views.
I wish the Sahara would blow some heat never mind sand our way,yes,roll on summer. Unfortunately ,the roller coaster of treatments is a ride we can never get off.
Take care and huge hugs ,Helen xxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

 

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,I'm having zolodex injections to make me menopausal . Just had one today,ouch! They had to do this as tamoxifen didn't work and the other hormone treatments are for women who are menopausal .
Wow,you have had a busy weekend! If I were you I'd go on the sick,knickers to work! Yes,it's so unfair the insurance farce for us MBC. My onc said I was okay to go and most of his patients don't get insurance or if they do the insurers squirm out of paying.So I went with none .
I'm at onc on Monday ,so that's when he'll tell me according to BCN ( after 4+ weeks trying to get her to ring me back!but that's another story. Or should I say it's what I expect at NTG)
Oh,I don't know what's happened to the sun,my dad used to call Cullercoats gods little acre ! I got a solar fountain for my little barrel pond and the sun has never shone since lol.so I'm to blame for no sun in tyneside ,sorry!
Take care & huge hugs ,Helen xxxx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

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

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Re: anyone on everolimus/exestamene got advice on see's ?

Hi,Linda,no I've never had chemo. I've been on two hormone tamoxifen and letrozole but both never worked at all. I'm starting the E/E when I see the onc next. I take zomorph and oromorph for the pain and had one blast of rads when I was first diagnosed . Hopefully EE will work and pain will get a bit better,fingers crossed. Surely one treatment will work. I'm 48 now. 47 when I was diagnosed . Yes,we went to florida in January . We thought we had better before the chemos come into play as I wouldn't like to risk going with no health insurance then.
I'm glad your hubby is on the mend,shingles is not pleasant.
I'll let you know how I get on with the EE ,hopefully not too many SEs.
Take care and huge hugs,Helen xx
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Re: anyone on everolimus/exestamene got advice on see's ?

Evening Catlady

 

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.