13-08-2009 08:58 PM
No neither an English teacher and not very academic, passed my first and only A Level when I was 30 and pregnant with my daughter.
I don't mean to sound matter of fact in a bad way, but sometimes you do have to face the truth. I was with a friend today and we were talking about how I am dealing with this. I told her that I had two options; first option is to get on with my life, survive as long as I can and make as many good memories as I can for my dh and kids and the second option is to hand someone a shovel and ask them to start digging my grave. The second option doesn't work for me!
Yeah, I did cry a lot at the start and then on the emotional days following chemo I cried a lot and at times got quite despondent. But I just had to pick myself up, dust myself off and get on with it. My eyes often fill with tears when anyone talks about the future. My boy said that he hoped I'd be well enough to go with him to Scout and Mum Camp. That's at least 6 years down the line (he was only invested into Beavers a couple of months ago! That one really got me going.
I gave up on the wig when the weather got hot. I too notice a difference in how people treat me when I have wig or headscarf on.
I see my consultant every 3 weeks, but it is being done under private medical insurance via my husband's employment. I don't know if I would see him so frequently if I was being seen under the NHS.
My mum would have been heartbroken to see me going through this. It's really tough on my dad, he's 80 next year and has already lost his wife and one son. I do wonder if there is any genetic connection, but mum's cancer was so advanced with secondaries everywhere that they never found the primary cause.
The Herceptin and Femera should hopefully stop the tumours from growing (at least for a while), there is a slim possiblity they may even shrink some more. If they start growing again its another course of chemo. My bloods are done every three weeks too and my oncologist is keeping a close eye on my tumour markers.
The Femara hasn't affected my sleep yet, but I've only been taking them for a few days.
I have a story to tell about my Zoladex injection but that will have to wait for another time.
I may be quiet for a couple of weeks, so don't worry if you don't hear from me.
Take care and have a great weekend yourself.
13-08-2009 07:22 PM
Hi snoogle,what a brilliant essay(only joking!),I`d hazard a guess that you`re either an English teacher or a very academic person.
I would also assume you`re a very brave lady,you sound so matter of fact about your illness,did you have a "crying every day"stage at all? That was every night during chemo for me,I had FEC,not as bad as I thought it would be,I usually had my weep when I took my hat off at bedtime. I did start off with a wig but shelved it when I lost eyebrows & lashes,got strange looks with it on,just got kind smiles when I had a hat on. Your G.P.was a bit slow in getting you treated,has your kind of b.c.got a name,mine is I.B.C.but when I said to my BCN was it the worst kind,she said no,it`s just how it presents itself,mine like yours started off very sore G.P.junior partner said "get your self some decent bras" so I wasted 6 months.
I`m so sorry you don`t have a mum,in a strange way I`m glad my parents haven`t been here to see me ill,my dad would have been heartbroken. Do you blame your genes at all,I was worried that I was going to set my daughter and grandaughters in the firing line but have read that my kind is caused by injury or infection,so,please
God I won`t. How often do you attend hospital to see consultants etc.and is the purpose of you starting Femara to shrink the b******?
I live in north Manchester so I`m under Tameside for surgery and Christies for chemo & radio. Christies saved my hubbys` life 57years
ago when he was 2,kidney cancer,they called it radium back then.
How did Femara affect your sleep,I haven`t slept a night through since diagnosis so I can`t blame the tablet. Hope it suits you,have a nice weekend, love Mags xx
12-08-2009 07:01 PM
I was diagnosed in March of this year. One night in bed I turned to cuddle my dh (dear husband) and screamed out in pain. We examined my right boob and it was very swollen and hard. It had gone like that very suddenly. I went to see gp next day who diagnosed (incorrectly) non-breastfeeding mastitis (never heard of it - neither has anyone else I have spoken to!). After a week of antibiotics there was, of course, no change so went back to gp. Scans followed, biopsys and bone and ct scans. All of which concluded that I had the breast cancer with secondaries, including but not exclusive to my liver. So far I have had 6 cycles of taxotere (3/4 dose) 4 of them with carboplatin, 7 doses of herceptin and, as you know, I have just started the femara and zoladex. From my diagnosis I have been on a dairy free diet (there is some lactose in some pills I have taken/have to take), I don't eat red meat and abstain from alcohol. I also bought a juicer and have at least 8 fruit/vegs juiced every morning, with some other stuff thrown in. I also try to drink at least 3 cups of green tea a day. I take some supplements as well. May seem a lot of effort, but I figure what have I to lose.
I haven't been at all well during the bad points of the chemo, just about returning to almost human during the good weeks. I have lost most of my fingernails, and look like a chronic nailbiter. Which I am not! My toenails are probably on the way out and I have lost one which was loose and I caught and ripped off!. The reason I have put weight on is because of the affect on my metabolism by the steroids. When on them I could eat two plates fulls of main course in one sitting and still be hungry. During the bad points of chemo I could barely eat at all. Even now I get extremly tired very quickly, but don't know if its chemo fatigue or cancer fatigue.
My kids are 6 (boy) and 10 (girl). From finding the 'lump' we have been as honest with them as we can for the ages and understanding. We try to give 'new' information to them when they are together, so that they both know what is going on and can talk to each other if they feel the need. Obviously the eldest is more aware of what is going on and is more emotionally affected on a day to day basis. The younger one has all the facts but the emotional process is a little different for him. We try to talk as openly as we can, although my daughter tends to ask dh the more difficult questions. I have to add that their school has been incredibly supportive about the whole thing, even sensitively covering cancer in my daughter's class for their PSHE module on illness. Her class all now know that I have cancer and one or two parents have commented on this and say how much their children want to be 'there' for her.
Even though your children are older I know from experience that your diagnosis is probably just as tough for them as it is for my two, albeit they can deal with it from an adult perspective. I say this because my own mother was diagnosed with cancer two years ago this month. Sadly she passed away within three months of her diagnosis. It must be so very difficult for both you and your daughter living so far apart.
The jabs went well. Have to say with shamed face that I flinched and yelped (well it was an implant) whilst my little on just sat still and didn't move a muscle!
In answer to your other question I like to have the facts. Indeed I asked about my prognosis when my secondaries were diagnosed. So I guess I am the bottom line kind of person. Tell me the worst and I'll do whatever I can to make it better. If my time is limited tell me so that I can make the most of it and help prepare my loved ones.
It is very refreshing to have this correspondence with you, someone who has primary, because I think mostly on this site we are separated by the nature of the threads.
I seemed to have written quite an essay, hope it is not too long and you haven't fallen asleep yet!
12-08-2009 10:26 AM
hi Snoogle, yes,mx is mastectomy,I`m only just grasping all the abbreviations for the terminology,some of you girls have missed your way,I never get nuch info out of the medical bods,that may because they`ve got me sussed as a real yellow-belly so they don`t want to make me any more scared. Since my other boob got sore,I don`t think I`d sleep at all without my Zopiclone,I wish he would have said a reason why instead of insisting it` not another cancer. When was your diagnosis,how was it found? what treatment have you had so far?
do you ask for the bottom line or would you prefer if they sugar coat it?I`m assuming your chemo didn`t make you very sick if you put weight on,in the 9months since my dx my start weight was 65kilos,current weight 59k,the removed boob was 38DD so that accounts
for most of the lost 6k. How old are your kids and are you coping well with raising them through your illness? My daughter is 38 with 2 daughters,12 & 15,they all live in Holland. My son lives with us still,he`s 34,so well past the stage of going out getting plastered
every night. Hope the jabs don`t upset either of you too much,
take care love Mags x
11-08-2009 09:55 PM
Given the additional potential side effects of the jab you are probably a lot better off.
Not sure what you mean by mx? Probably just being really dumb! Given its in the same sentence as op I guess you mean mastectomy (spelling?). If so, then no. As I have secondaries that particular horse has somewhat bolted. The only time that surgery would be considered is if the tumour in my breast was growing and the secondary tumours weren't and apparently that is very unlikely.
My GP didn't have much choice on prescribing as I had a copy of the letter from my Oncologist which stated that this was the treatment he wanted. Good job I did as she hadn't received the original when I went to see her!
I have put on 2 1/2 stone since I started chemo, even with the nausea. I put it down to the steroids. I have already gone down half a stone since my last chemo session.
The lady at Healthcare at Home rang today and I will have my first lot of herceptin at home with them on 26th August. Not sure that I am really looking forward to the injection tomorrow. My GP is doing it, was a little surprised as I thought it would be something they would get done by the nurses in the treatment room. My little boy has to have his Hep A booster 10 minutes before I am due to have my injection so there may be a bit of mutual whinging going on - ha ha!
On the subject of moaning I have to say I don't usually swear a lot, but since my diagnosis the expletives keep on flying out of my mouth!!!!
11-08-2009 06:03 PM
Well I`m deffo not missing out on your jab,I`m 57 so you could safely
say I`m post menopause! Having said that,it`s only 18 months since I last had a period,thought I was going to end up in the record books, they just kept on coming. I`m just finishing my 3rd pack of Femara,
my G.P. tried to wriggle out of giving them to me,I didn`t argue with her I told tales on her to my Mcmillan nurse,soon got `em then.
I had my mx in May this year,was just about feeling human when I was put on Femara,that coincided with my rads which made me feel more poorly than chemo(just realised I`ve already told you that).
Can`t say I`m jumping over the moon yet,have told my hubby to stop asking how I am,he gets despondant when I keep saying"s***". I get an awful lot of Cramp from my op,have you had mx? This weeks problem is sore groins,I already told you about my other boob being sore,
the surgeon dismissed it (kindly)next doc I see is onc on Sept 3rd,
will have to see what he says. I get a lot nausea and my appetite
isn`t a patch on what it used to be. God,it`s brilliant to moan, have you read the posts about Asda bras,I got One today,its great,
can`t believe it was £35 cheaper than the 1st I got. Feel free to moan to me,I`d do a lot more moaning if I still had youngsters,poor
you. Keep in touch, Love Mags x
11-08-2009 04:53 PM
I am having the injection because I am not yet officially menopausal. I have been in a temporary one whilst on the chemotherapy, but my oncologist believes that the symptoms I am having indicate I will return to pre-menopausal within a few months. Apparently Femara doesn't work if you aren't post-menopause, so the injection forces the body into menopause. I am not sure if it will be temporary or permanent, but as I have no intentions of having any more children that's beside the point. After all holding this cancer at bay for as long as possible is my number one priority. Regarding your comment about the cost of Femara I did notice an amber warning box on the gps screen when she went to prescribe it, I didn't have chance to read it but would presume it was a cost issue warning. She did state that initially she could only prescribe one month in case I couldn't tolerate it to ensure no pills were wasted. Hopefully I'll get it on repeat prescription after that.
Thanks for the link to the website. I will try and have proper look later when I have some time and some peace and quiet, the children have a friend round at the moment and they are playing hide and seek. All very noisy!
I haven't heard of Ad-cal. I may look it up and mention it to gp tomorrow. I am taking calcium and vitamin d tablets so don't know if they do the same job.
Yes it would be good to compare notes. How long have you been taking Femara?
11-08-2009 10:49 AM
good luck on our pill,can I ask what the injection does,I suppose I could look it up but I`m such a scaredy-cat,I will start thinking that I should be getting it. When I was going for rads,i became friendly with a lady whose daughter lived in U.S.A.and she`d got hold of a really informative booklet,printed in the States,nothing frightening just facts and figures,mainly showing its` superiority over Tamoxifen. Theres a website address in the booklet-
http://www.femara.com. Maybe you could read it on-line,there`s also a patient support line but would probably cost a bomb to ring from here
18669533627,if this was a normal American number,it would be preceded by 00. Well do keep me informed,we can compare notes occasionally,did you get Ad-cal for your bones and what did you do about sleeping tabs? Love Mags xx
11-08-2009 08:01 AM
Hi Mags and Julie and Tracey,
Well saw my gp yesterday. Started letrozole/femara this morning. I decided to try the mornings and have a supply of sleeping pills just in case I have problems. My gp will give me the zoladex injection tomorrow and thereafter three monthly.
I see my oncologist again next Tuesday, a week early because he is not available the following week. I am still waiting to hear when I will have the herceptin. It is being done via a Healthcare at Home service and this wll be the first one wth them. All previous ones were done at the hospital.
My husband read through the potential side effects of the Femara last night and we were both amused that I already suffer/suffered a number of the same side effects from chemo anyway!
Best wishes to you all,
07-08-2009 11:15 PM
Thanks for your comments.
I have heard that taking femara in the mornings helps to prevent sleep problems.
I got virtually every side effect from chemo to varying degrees, so hopefully won't be the same with these. However, chemo did shrink the tumours so I am not going to complain too much!
I am already taking a few supplements which I should probably tell the gp about and will ask advice on taking glucosamine.
07-08-2009 10:39 PM
Don't recall any reference to femara affecting the other boob. Glad for you that yours is primary. All you can do is mention it to any relative 'professional' that you get to see and if you are still unhappy then all you can do is insist on it being investigated.
Apart from the herceptin which I started in March with the chemo, this will be my first long term anti-cancer drug. I hope with the emphasis on long term! The herceptin is intravenously, which from the next dose will be done at home rather than at hospital, so that will be an experience! I guess the injections will be at the doctors surgery, however, my dear husband is very good at giving me subcutaneous stomach injections as he had to do it the day after every chemo.
It's always good to get a different perspective. Hope all goes well with your appointment.
07-08-2009 10:24 PM
my tumour was primary I think,at first appointment after mx the doc said there were 2 tumours,2.5cm &0.8 plus 5 nodes. When you looked up S.E.s,was there any mention of Femara affecting the other boob,
it`s very tender but doc gave me a good probe and said he was sure there`s nothing wrong with it(apologies if I`ve already told you about this). I will be seeing chemo& rads consultant in 4 weeks,will be glad of a 2nd opinion. I`m sure you`ll be pleased when I tell you how he praised Femara,is this your first long term anti-cancer drug?
Take care, love Mags xx
07-08-2009 10:02 PM
I have been on letrozole (femara), herceptin, zoladex (implant) and Zometa(biphosphonate) for over a year. This is for secondaries.
I do get very tired and will not lie, extremely achey.
I found for me, it helps to take femara in the morning, to help with sleep problems.
I would try not to worry about the side effects, just wait and see what happens.
Some people have no problems whereas some struggle. A bit like chemo, everyone reacts differently.
A lot of people find that glucosamine helps with the aches and pains.
07-08-2009 04:12 PM
haven't beentold how long i'll be on it, but guess it will be for as long as it works. I am on the herceptin on that basis. Do you mind me asking if yours is primary or secondary. Mine is secondary, liver and bone mets, although secondary diagnosis was one week after pimary diagnosis!
Current plan is for three weekly blood tests and consultations to make sure we are keeping on top of it. Chemo shrunk liver tumours as much as could have been hoped. so hopefully this combination will halt its growth and if i'm really lucky it will shrink it some more, although that is a very slim possibility.
Found list of possibile sideeffects of the letrozole and zoladex online - starting to wish I hadn't looked!
07-08-2009 03:01 PM
hi Snoogle, thought I`d pass on a tip from my B.C.N.,if you`re going to take a sleeping tablet anyway,she advised taking Femara about an
hour before bed then if you`re going to be prone to any queasiness,
hopefully you`ll sleep through it. It works for me,usually a sweat wakes me around 5am,but can get straight back to sleep. How long do they tell you that you`ll be on it for,it`s 8 years for me but G.P.will only give a monthat a time,believe it costs around £75-£80
per packet to N.H.S.,good job we`re worth it! Love Mags x
07-08-2009 11:38 AM
Rang my local chemist this morning, they keep letrozole as a stock item so shouldn't have any problems.
I got a copy of my oncologist's letter to my gp today which contains request for the letrozole and zoladex so I may ring the surgery on Monday and request an earlier appointment than the one I have. Even if GP hasn't got her copy of the letter I can take mine. I'd rather start the treatment sooner than later.
Thanks for you help and advice. I will be requesting more zopiclone as well! Thank goodness we now have free prescriptions!
06-08-2009 09:31 PM
Thanks for the warning. Is it a distribution problem or a cost issue. I had read about problems on another thread, but was not sure why it was occuring.
I wonder if my regular chemist would get them in if they knew it was going to be an ongoing prescription request. It may be worth me having a word with them. There are quite a number of major supermarkets around here that have pharmacies as well as a reasonably sized Boots, so hopefully I will be okay.
06-08-2009 07:44 PM
I can heartily recommend "zopiclone"sleeping tablets,they go very well with Femara,can I also warn you,Femara can be difficult to obtain,not many chemists stock them. It may be worth getting out your yellow pages to see who`s got them x. Good luck, love Mags
06-08-2009 02:47 PM
Thanks for your reply. I see the doctor on Wednesday for the prescription. I have found some other threads (I didn't initially realise it was same as Femara!) and there is a lot of reference to insomnia so I will ask advice on time to take it. I sometimes needed the help of sleeping pills when on chemo, probably more to do with the steroids than anything else! I may ask for further prescription of the same sleeping pills, unless there contradict the femara in anyway!.
Hope your side effets reduce!
05-08-2009 07:01 PM
I am not on Herceptin but I am taking Letrozole (Femara) and the 3 monthly injections Zoladex. I get a bit of stiffness and aching from the Zoladex and tingling in the hand and arm from the Letrozole. I have been taking the tabs last thing at night and noticed I'm a bit restless so am going to try first thing in the morning. Other than this (and it's not as bad as it probably sounds honest!) I have been fine with this combination. Good luck with it and I hope you have no side effects at all.