Starting Chemo in December.2012

[Lisalouw]

Thanks border, can't believe I've got a rash already 5 doses in , I suffer with prickly heat anyway , at least that's what I think it is , I already take antihistamine for hayfever , it's driving me nuts abit , very itchy , steroid cream takes it off abit , I'll ask them on mon when I go , I normally use eurax cream when I get it in the sun so I'll take it with me to let them look at it , I've also got aloe Vera gel I'll ask about that too , they seem to be very strick , e45 or diprobase x
marie , ha ha , is your scalp still purple , think ill go for boring brown to be safe , is it you who's getting rib pain , just been reading my radio booklet and it says rib tenderness is a side effect and also rib fracture !
Hope everyone managing there aches, pains , lumps , bumps and god know what else we seem to be getting
I'm at Weston park which is a cancer hospital, and yest I saw a young lad in a wheelchair , I can't get him out of my head , poor lad , its made me shake myself and think stop moaning Lisa, lv to everyone xxx

[Mindy63]

Good luck with hair cut LisaL. One word of advice.....don't go purple!

[Border_Collies]

Lisalouw - I developed a rash the day after I finished rads. Very itchy. I took Piriton anti-histamine tablets and the rash immediately stopped itching and the spots gradually disappeared. Used only Aloe Vera gel on skin which never went even pink.
Hope the hair turns out well. Just having it done will make you feel so much more normal and have a lovely rest at your parents' home this weekend.
Have a lovely weekend everybody - I think the sun is going to shine.
B

[Guest user]

A while since i have been on here, sorry that so many are having problems.
when the chemo guy says anatrosol ( or whatever its called) will have a low to moderate benefit as only 4 out of 8 can you all understand why i havent started taking it yet? reading these posts makes me even more reluctant...had finished with menopause symptoms and really not wanting more.
I also lost wieght during chemo as couldnt eat anything,just wish i could sill say the same! shouldnt stomach have shrunk?
I am doing most things as normal , horses, allotment , shopping etc. working 4 hrs a shift and feel ok then suddenly get exhausted out of nowere? I think some of it is dealing with people at work who all seem pleased to see me back which is nice, but constantly being asked if its"all gone" and my prognosis is draining, as is feeling i need to be cheerful...
Thanks for humour again Cress the Oracle and keep up the research. Maybe" the meaning of life,the universe and everything in it" could be your next topic!
Chinup Cybele and Marie.
Hugss to all, X

[SP0]

Few days since I've been online...
Cress - many thanks for perspective
QD - love and support your declaration of intent to family. I've told mine I'll only go so far & to know what to expect if I ever issue a family invite to a holiday in Switzerland...
Cybele - I can't believe you're having such a rough time of it, heartily wishing it gets better for you soon. Try to remember it's all in aid of best chance of no recurrance. Re Tamoxifen, it hasn't made any difference to me, perhaps that's because I already had night sweats and hot flushes during chemo.
BC - you sound very wise!
Good luck Marie & Mandyp, hang in there Lolly.
Sarah.x

[Lisalouw]

Yeah QD oh new job and yeah for son passing driving test , yep tattoos very painless , one in centre of chest and one at each side of rib cage , mine looks like a black freckle xxx
my rash is getting worse , it's like a prickly heat rash , I'm only on rad 5 , thought skin problems started around 10 , I've got some steroid cream to try now , the fatigue is back too, boo! Feel like I'm glued to the spot at moment , think the driving to rads and back and parking has been abit too much , my dad took me today and I've packed a bag and me and me little boy are stopping at mum and dads for wk end , on the plus side I'm having my hair cut and coloured on tues, yeah , I'm hoping to be able to go without hat or wig and give my head a breather
cybelle, so sorry your having a rough time , I really hope things start picking up for you , I had a reaction to an antibiotic through chemo that made me anxious , depressed and hallucinate so I know how you feel , when chemicals get you mentally it's very hard to deal with
love to everyone , I'm still waiting on my genetic test xxx

[Mindy63]

QD still waiting for my various medical appointments. Trying not to fret too much. Didn't expect to hit a bump so soon, but then I am a terrible worrier.
Good luck with the radiotherapy. I was one of the lucky ones with no damage to skin at all.

[Border_Collies]

Congratulations junior QD on becoming a fully fledged driver and so pleased to hear that OH has got a job. What a relief that must be. Hours are tough though. Hope the tattoos go well. Really quite painless.
B

[QueenDrama]

Hi all

Cybele- what an awful experience for you but i do share Border Collies concern re the abrupt cessation of steroids. Both my kids have asthma and both have had prednisalone and it was drummed into me that their doses were to be gradually reduced. Sending you a hug.
Lolly- thanks for the reassurance re tattoos. I will be glad when Thursday is over.
Maire - so was everything put down to tam?
Mandyp - good luck with the results

My OH has a job parking cars at birmingham airport. He does 12 hour shifts. Yesterday he was supposed to leave at midnight but they were that busy that he worked until 1.15am! He rolled in at 2! Worse than a bloomin teenager! On the plus side my son passed his driving test yesterday! yay. so I can now remove that taxi driver badge that ive worn for the past 19 years!!!!!!!
QD

[Border_Collies]

Cybele I really feel for you as so much is being thrown at you at the moment. However, I have always been led to believe (by my veterinary surgeon) that steroids should never be stopped abruptly and that you should wean yourself off them by gradually reducing the dose. This is what I've always had to do when my dogs have been on Prednesilone.
Apparently artificial steroids stop our adrenal gland (I think it's the adrenal) from naturally producing steroids which we need to fight infection, inflamation etc. so if steroids are withdrawn abruptly our bodies are left with no steroid output. By weaning ourselves off them we gradually encourage the gland to go back into production again. Also abrupt withdrawal of steroids can cause lots of side effects with are very unpleasant and our bodies are not able to adequately fight infection until the adrenal gland is fully functional again.
I try not to take steroids if I can get away with it - didn't have them during chemo and this is because of what I've learned over the years from my excellent veterinary surgeon, with all my various collies.
Google it Cybele - don't want you to feel worse than you already do.
Take care.
B

[mandyp]

Hi all.
OMG Cybele - you did right to take yourself off the drugs....sounds blimmen miserable.
I had the blood test yesterday at the genetics. It was really interesting......I'd argued with my onc when i asked for a referral that even though my family history is not strong that there was a distinct lack of females in my family. also I quoted you Cress on the TN under 50 malarkey. And I'm glad I did as the genetisist said that despite the lack of family history....no one under 70 had cancer in my family, that the mutation can start anywhere. Anyway, should have my results in 2 -3 weeks. It was a no brainer for me to have the test. Although was tough getting blood as veins were not playing ball!!!
Also went to Docs to get prescription for dilators.... and I can't wait. Hope i get a pink bag like you Cress!!!! Also told doc about my wheezy chest and she's organising a couple of tests for me - bloods and the one where you blow into the thingy!
Glad the rain held off as I made my twins' sports day today. Their last year at infant school. Very emotional, but lovely.

It's all about bearing up really. And trying not to think too hard about going back to work!!!
Love to all
xxxx

[Mindy63]

Bloody Tamoxifen. Fume fume!
Hope your boiler had a good old service!
Snigger.

[Cressida]

Warning - load of hastily researched stuff about Tamoxifen - a drug I don't even take - follows -

Regarding Tamoxifen and liver enzymes - I have been waiting for British Gas to come and service my boiler (that's not a euphemism, even though it sounds like one) so I started googling about. I vaguely remember something about liver genetics and metobolising drugs from the days when I used to research stuff in mental health. OMG my brain must be starting to work again. Anyway, we know that different people metabolise drugs differently (Yes, everyone is different...). Turns out that a genetic difference in the CYP2D6 liver enzyme seems to alter the way some people can metabolise a range of drugs - psychiatric and, yes, Tamoxifen. About 10 - 15% of Caucasion woman could be affected (and higher in other ethnic groups). It's very new research and still very inconclusive. Can't really take a bunch of women with the genetic difference and a high risk of eostrogen cancer and split them up into 3 - one group gets Tam, one gets something they think will work and one gets nothing. Wait and see how many die. Hmmm. Would you sign up? So they have to look retrospectively at women who have the difference and have had treatment and try to understand the effect.

Anyway, it does look like it could make a difference in treatment for pre-menopausal women. But, there is no proven cost advantage to the NHS so they won't test you. Could not find out the cost of test. So probably very expensive. Also there is more than one version of the test, so you need to know you are getting the full range tested. The good news is that all this Tamoxifen hype might make some more research cost worthy and the cost of all genetic testing is rapidly coming down. Anastrozol is the suggested alternative to Tam.

So, in summary, your liver may or may not have it in for you, and it's very hard to find out.

I look forward to hearing what you discover Cybele.

Anyone else got anything they want badly researched?

[Cressida]

Mandy - I was just reading back - was your appointment for gene testing or results? How did you get on?

[Pammyx]

Coming in from the march post Cybele sorry to hear about your meltdown I have meltdowns even without the extra steroids. I am due my next chemo next week followed by rads and I do wonder how I am going to manage emotionally when the focus is off treatments, hopefully the passage of time will improve things. Best wishes Pam

[Cressida]

Cybele - rare side effects of Prednisolone do include mental disturbance - anything from depression/sleep disturbance through suicidal ideation to psychosis. Really hope it has calmed down now. Major hug, xxxx

[Cybele]

And in breaking news, last night the cumulative effect of a week of huge doses of steroids made me so crazy, aggressive and paranoid that i have had to stop taking them, with 2 days left to go.

I verbally evisceracted my poor sister during a discussion about religion and evolution over dinner, reducing the others round the table to a stunned silence. This is my nice kind loving sister who has been looking after me all week. Mybrain was so manic, so speedy, so aggressive, I was not in control of myself and behaved in a very uncharactersitic way, not realising what I had done until aftewards. (I did apologise, grovelingly, when my brain cleared, but she was deeply upset)

Then I was so wired I couldn't sleep and was practically bouncing off the walls of the the bedroom all night, msking mad plans to run away and possibly end it all. At one point I nearly took the dog out to go and lie in the middle of a field, but then I decided I would wait until morming and run away to the Orkney islands where no one could find me.

There was like 10% of my brain still being me and watching in horror as the other 90% of my brain just got more and mpre crazed.

It wasn't like this on the Dexys, which made me manic and happy. Thisi s HORRIBLE. I cannot take any more of this stuff *(Prednesilone)or my brain will explode and I might get violent, I was displaying extreme verbal aggression last night, in a very unkind way. That is not me. .

My brain is still spinning and whirring , but I have taken a Lorazepam to calm it down and that is helping a bit. The coughing is just going t ohave to get better by itself because I CAN'T take sny more of these steroids.
When is this all going to end? it's bad enough losing control over your body, but when your mind starts to go, too the weirdness and horribleness of it it just too much

[Cybele]

double posted

[Mindy63]

Well my new symptom is upper back ache. So that's pain in side and rib pain, fuzzy headedness and vision deteriorating. I have got quite a list to present to the oncologist. I just hope it is the Tamoxifen. The alternative is just too scary!

[Cressida]

Cybele - according to the recent Tamoxifen hysteria - the figure for "unacceptable" side effects is 10%. I presume by this they mean the level of people who refuse to continue to take it because of side effects, but the Onc who was on the Jeremy Vine show did not fully elaborate. For everybody else it is "well tolerated".

[lolly123]

hi
Jenny,
I started my Tamxofen before i started the Rads there was a date to start them on the packet i think i was taking it two weeks before my first Rad.
QD

The tattoos are nothing just a little scratch then they put a bit of ink there which sinks into the skin, they are painless so dont be nervous, it will be fine.
My hands are much better at the moment i am wearing a support at night and it seems to have eased the pain, just a little now so all's good, i will just have to wear them untill i can get them sorted out.
hope you all feel well soon
lolly
x

[Cybele]

QD, that is a brilliant argument, which I will appropriate to use with my own family, should it become necessary.
Mind you, given that both my mother and my sister now say they would never have chemo, after seeing what I went through, maybe they would give in gracefully if I refused to have it again..
Re Tamoxifen, I'm 7 out of 8 oestrogen positive, so I really, really should take it. Mind you, I have found out that there is a certain percentage of women for whom Tamoxifen will NEVER work, because of some genetic reason to do with liver enzymes, so there's no guarantee it will work.
I asked my oncologist about this, if there was a test you could take, and he just said it was a small minoroity of women, it would be too expensive to test people , etc etc. I wasn't convinced he was even up to date on the latest research.
But, anyway, how come they DON'T TELL YOU that it doesn't work for everyone? TAMOXIFEN THE WONDER DRUG DOES NOT WORK FOR EVERYONE, EVEN IF YOU ARE HIGHLY OESTROGEN POSITIVE. PLEASE NOTE.
Just google it - there's lot of VERY recent medical research on it.. in fact, I'm going t odo that again before I start taking it. i will report back if I find anything helpful.
Not actually sure that knowing it doesn't work for some women, and might not work for me, IS that helpful, when I'm feeling so dubious about taking it anyway. But I always feel it's better to have information about the efficacy of drugs which is as complete as possible..

[QueenDrama]

Hi all!
SP - hope 2nd op goes well
Lisalouw - what did having the tattoos feel like? im nervous!
Shellebelle- Hope the reason for the dizzy spells is found - so that you can deal with them
Cress- well said indeed
Cybele - ive already told my family that if my cancer comes back im not going to have any treatment. they argued that if i loved them i wouldnt want to leave them, I argued that if they loved me they wouldnt put me through it all again. lets hope im never in that position.
re tamoxifen. It will only work if you're oestrogen recepter positive. its not a failsafe for everyone. There was a newspaper article about 7 years ago re herceptin. it was hailed as a wonder drug but if i took it it would do nothing for me. Its all false hope and stupidity.
QD x

[Cybele]

Well said. Cress xxx


Am staying at my sister's while my OH is away chairing a conference in Switzerland - I MADE him go. He has been a real hero for the last few weeks, and was quite prepared to cancel, but I thought he desperately needed a break and some normality and people talking about something other than the torments of cancer treatment. But I love it that he offered... 🙂


Slowly recovering will to live. Burns healing quite well now, but still sore on right side of breast.



Still coughing, will need another week of steroids, Ithink. But not coughing all the time now. Extremly weak and tired and shell-shocked from all this. Was not expecting rads to be another nightmare. Not even thinking about starting to take the Tamoxifen until I am feeling much better - F*** them all.



In fact very much minded right now to refuse any more treatment of any kind, ever, even if it comes back... after 9 months of torture, and counting. I know that is irrational and stupid etc etc, and it's really important to take the Tamoxifenbut that's just how I feel right now. and I get really angry when they write about how they are going to give Tamoxifen the wonder drug to all these women to prevent breast cancer, as if they were going t ogive them aspirin - never mentioning that it will immediately give all the premenopausal women the menopause. No one ever talk about the side effects. I know everyone doesn't get the bad side effects but I'd really, really like to know how many do. Maybe i won't get any side effects but I so DON'T WANT TO PUT ANY MORE CHEMICAL CR*P IN MY BODY. The current batch of steroids aren't agreeing with me nearly as well as the Dexys - but I don't know if they're why I'm still feeling so bad. With all these drugs you just NEVER KNOW what is making you feel so awful at any given moment. That's what is really bugging me now..


Sorry, rant over, I'm feeling particularly badly disposed towards the cancer industry at the moment...


To whoever asked about when you start to burn with rads, this was my timetable: despite massive, repeated applications of aloe vera gel for several weeks before and then during treatment, I started to feel sore on about dose 10 of the treatment, and by dose 13 was badly burnt with raw, broken skin on the whole underside of my breast and around it on my ribcage, a large area, with horrible green goo oozing from the wounds. It was extremely painful and continued to get worse after the end of the treatment and was at its very worst a week after the last dose.


That was a week ago, since when it has started to heal, and is now largely healed on the left and under the breast, but still sore on the right hand side


There is no way of predicting if you will burn or not - Border Collies and I prepared in exactly the same way - I burned, she didn't.


As far as I can see, none of the creams etc make any difference whatsoever - if you're goinig to burn, you're going to burn. Once you have burned, it's best to keep it as dry as possible, so on advice of nurse all I have done is clean it with cotton swabs and saline solution several times a day, allow it as much time open to the air as possible, and use self-adhesive silicon dressings they gave me at the hospital which are very good and don't take off your skin when you remove them (unlike the ones i got from Boots when I ran out).


Hope everyone else is feeling better - and good luck to those still doing rads. Hope you do better than me! Try to follow the border Collies model, not mine... xxx

[Cressida]

Sarah - It is good news they can't find any evidence of your secondaries. Sorry you have to go back under the knife, but it seems positive to me that they think it is worth doing. I know what you mean about just wanting someone to tell you for sure it is OK. Someone on the Younger Womens Network said they feel like Schrodinger's cat (sorry to go a bit geeky) and I really get that. We are living with something that might, or might not, kill us. But NO ONE KNOWS.

I know it is not the same as being diagnosed with secondaries, but I had such a poor response to chemo that they were basically telling me that that was they expected unless I had more chemo. I subjected myself to it and it nearly killed me and it had to be stopped. I felt under a cloud of doom. I had a CT scan and they said there was no evidence of cancer. I still couldn't shake it off, but the same day my friend's dad phoned me to say his 36 year old daughter was going to die that night. He then asked me how I was and I realised I could hardly whinge about how I might get cancer back and it might kill me. I told him I had just been told there was no evidence and sent away for 6 months to get on with my life and he was so pleased for me. His daughter really did die of cancer that night and it really changed how I was thinking. I don't mean to say you should feel better for other people's misfortunes. I just mean that on that day I realised I could chose to live without obsessing about what I can nothing about. It won't change how it turns out, but it can change how I live until then. I am not Pollyanna cheery about it all (you don't have to read many posts to know that) but I just think that I have done what I can and now it could go either way, but that is not in my control. I worry about my pains, my lack of energy, my "shrinkage" and many other things, but I don't worry about being killed by cancer. Deal with today and live the best you can.

Good luck with surgery. xxx

[jenny5931]

hi
Could anyone tell me when to start hormone tablets i finished rads yesterday.
thanks
jenny xx

[Lisalouw]

Border, I'm wrong, diprobase no lanolin but e45 has, I've used the e45 for past 6 month though on my surgery scars so not sure if that , so could be the diprobase , is smells vile too xxx

[Lisalouw]

Border, could be the cream then as both e45 and the diprobase they gave have lanolin in them , I'll carry on and see how it goes , I've got aloe Vera gel too so can try that and I already take loratadine for hayfever , I'm a d cup at least I think , not been measured since my op , going to go to mns after all this and work got me a voucher for new bras , I'm still in sports bras for time being x
shellebelle, hope your appt goes ok this morning , I think ref to dizzy clinic is a good idea, is that what it's called , it must be horrible , I had an ear infection once that made me feel drunk all the time , I really hope something gets sorted , you must be getting really fed up with it , big hugs xxx

[shellebelle]

Lisalouw I am seeing Vascular surgeon this morning about aneurism and I am having heart scan next Wed. Don't know about Neuro yet. GP said would refer me to "dizzy clinic" if Onc doesn't. Yes I feel constantly off balance. It has been a week since I last took a Tamoxifen tablet and not seen any improvement so far. It's really horrible feeling like this day in and day out.

[Border_Collies]

Lisalouw - Glad the rads are under way. There are aeveral types of E45 cream and I think I read on here sometime ago that one of them contains Lanolin. That will make you itch. I didn't itch until th day aftefr I finishedc rads,i.e. day 16. I took Piriton - worked like magic. I was never sore or red. Used Aloe Vera Gel throughout. However I think the larger you are the more chance of soreness (I'm a modest C cup) because there are more fleshy folds to rub against each other ... I'm quoting my Rads Onc here. Hope it all goes well.
B

[Lisalouw]

Hi ladies , just had my 2nd rads , I'm armed with diprobase and e45 , can't wait to get it all over with , I seem to have really tired days with not so bad days , I've still not plucked up courage to dye my hair so I'm still grey so still hat and wig wearing , my feet have been playing up too , sore and I look 90 when I've been sat and start walking , when does the rads start to get sore I feel itchy already but think it's in my mind as I've only had 2 doses , maybe I'm being crazy Lisa again
cress, how's the fatigue ? , that's interesting re menopause and thyroid , I've also been plunged into early menopause , I'm getting all the symptoms , at least I hope it is as I don't want to go through it all again if not , in fact I'm having a flush now so I'm huffing and puffing , phew . X
shellebelle, how you getting on with your dizzyness , is it all the time ? Must be awful , have you any more news or heard anything from your refs to cardio and neuro , yeah for the hair x
lolly , how's the hands , you need splints , really worked for my friend , she got them from physio whom also gave exercise and I'm sure some sort of band thing , ask your doc for reff, do they do choose and book where your doc can make you an appointment while your at surgery , I would try something stronger than paracetamol just for time being too x
marie , so sorry you feeling worried all time , it's awful when every pain becomes sinister , I also get rib pain but it comes and goes and I've read a few of us have been , best to get it checked out , sending a big hug x
Sarah , I also had an unclear margin , I had my 2nd op after chemo , I sympathise with the stockings, awful arnt they , I was told 6 wk but I've been taking mine off in day if I've been active but if not doing much keeping them on , great news re shrinkage x
lv to everyone , Im def interested in the look good course , I like the idea of freebies , must find one near me x

[SP0]

I spoke too soon... Lump histology results show margin is not clear on one side, so I'm going back under the knife again next Tues.

Despite my (disappeared) secondaries, I still think it's worth it, because if the secondaries have gone, any cancer cells in the blood or lymph might have too. On a more positive note, the grade has reduced from an aggressive 3 to 1, in response to the chemo. So, again, I think worth seeing off the last bit of it, in the hope it is the last bit and any remaining is weakenned and therefore more likely to be controlled by the herceptin.

Most impressed with my surgeon, who describes himself as an "onco-plastic". He managed to get a 60g lump, bigger than a golf ball out of my breast, with just a small curved incision around the top of the nipple. Says he's going back in the same way...

Less impressed with having to wear surgical stockings for another few weeks and the increase to my hot flushes, maybe as a result of stopping tamoxifen for surgery or the anaesthetic!
Sarah

[Border_Collies]

Sarah - Yay to being tumourless. So am I so I'm told, but I still can't seem to get the rain clouds off the horizen!
QD - like you I also didn't put on any weight during chemo but maybe that's because I didn't take any steroids.

Lolly - sorry the hands are so painful - are you going to have them sorted out?
Hamley - thanks for the "bolus" explanation and I sincerely hope you're not going to get burn pain,. Only 6 more.
Cressida - just go away and play with your pink bag of goodies and watch your dvd (take a Baileys with you). I don't think you've lost your sense of embarrassment - I don't think you ever had one!!!
Seriously folk, may you all be pain and worry free. Done the first bit, second bit's not so easy.
B

[Border_Collies]

Sarah - Yay to being tumourless. So am I so I'm told, but I still can't seem to get the rain clouds off the horizen!
QD - like you I also didn't put on any weight during chemo but maybe that's because I didn't take any steroids.

Lolly - sorry the hands are so painful - are you going to have them sorted out?
Hamley - thanks for the "bolus" explanation and I sincerely hope you're not going to get burn pain,. Only 6 more.
Cressida - just go away and play with your pink bag of goodies and watch your dvd (take a Baileys with you). I don't think you've lost your sense of embarrassment - I don't think you ever had one!!!
Seriously folk, may you all be pain and worry free. Done the first bit, second bit's not so easy.
B

[SP0]

Many thanks Cress for making me laugh! Commiserations with all feeling pain & discomfort.

After WLE I felt buoyant for 2 days, as it was easier than expected. Now tearful and feeling sorry for self again. No rational explanation, think it must just be being a bit invalidy and being reminded of brutal cancer treatments and uncertain prognosis.

Technically I may now have no remaining tumours (liver & lung mets disappeared after chemo), but still no bugger can say anything really positive about my potential future. No matter how often I remind myself that I'm here now and should make the most of it, I just don't feel that way. Hoping it will pass soon. Meeting surgeon tomorrow and hoping for results of tissue samples.

Mandyp - I have "shrinkage" too (see a few pages back in the thread). It's become less severe as the weeks have passed, but is still an obstacle!

[QueenDrama]

oh Lolly - you poor thing., when i was preggers i had carpel tunnel and had a splint which really helped. maybe your doc could order you one.

Cress - i had to laugh! Your dilators are in a pink bag!!! shouldnt it be red for passion!!! I didnt put on any weight during chemo. i did after! but then ive never been conventional!

QD

[Cressida]

Me again. I just picked up the dilators. Eeek. They are in a pink bag and there is a "Demonstration DVD"

Let me know if this is too much information. Did I mention the loss of my sense of embarrassment?

[Cressida]

QD - Weight gain is common with low thyroid. There is a link to menopause, rather than to cancer. Cancer caused me to have chemo, chemo caused my menopause and menopause may have messed with my thyroid. Radiotherapy can mess with your thyroid if you have rads to that area. As you know, most people put on weight when having chemo for BC. I lost weight cos chemo made me so ill I couldn't eat, but I am not typical. Making up for it now by eating chocoalate and drinking Baileys. Not drinking Baileys right at this moment (3pm) but doing so whenever the moment seems appropriate. So nice to be able to taste and enjoy stuff.

[lolly123]

hi QD
re hands,
i was woken up on Saturday with the pain my hubby got up and got me some paracetamol, i was in tears it hurts so much, but reading on the internet, they recomend strapping up the wrist so thats what i am doing, it didnt work saturday night was woken at 4.30 in the morning, the same as Saturday, but last night was good, hoping the strap will ease the pain, will defo go back to Docs if it dont work.

lolly

[QueenDrama]

Hi Peeps
have been a bit busy so havent been on the computer at all. It was my birthday on friday. we went to see Fred Zeppelin a led Zep cover band. i stayed awake!!!!!
Shellebelle - ive been told (by a former teacher) to ask for Arimdrex if tam doesnt suit me. maybe its worth a try for you? apparently its very expensive so you have to ask for it.
Lisalouw- hows the rads going?
Sp - well done on the op.
Cressida - the thyroid thing is interesting. is there a link between that and weight gain on/after chemo?
Border Collies - glad you enjoyed your hol. Insits on a scan. im flippin well going to. I had a normal mammogram 6 months before my diagnosis.
Lolly - hows your hands now love?
Maire- i was told at my meeting with the radiologist last week that rib pain is common
Hamley - all hail to our new model! kate moss eat your heart out!!!!!
Mandy - how did the gene thing go?
Cybele- how you doing now?
I have my planning meeting booked for july 4th eek! im also going to do a breath holding trial. basically i get flooded with oxygen so that i can hold my breath for 4 mins so that the rad beams are targeted on the breast and upper lymph nodes. it should help with minimising rib pain - not sure if i can shut up for 4 mins let alone hold my breath but ill try!!!!!
QD x

[Cressida]

Ooops. That rule about the 40's is the wrong way around. Chemo brain goes on and on.

[Cressida]

Hamley - opinion is divided about when to be sure you have "done" the menopause. My GP says that, as I have not had a period for about 18 months, I am definitly done. The Onc says you cannot be sure until 2 years have passed. Generally they use the rule of 1 year for the under 40s and 2 years for the over 40s. I like to think I am in the middle of this rule. They can test you for various hormones but that will not be reliable as, if you have not finished menopause, then the levels will fluctuate but you will not know whereabouts in the fluctation you are if you have no periods. Then, of course, if you take Tam, that could throw another spanner in the works, but I don't know enough about that. So, that's as clear as mud then. I think I am done as the symptoms of going through menopause have got a lot better. I still sweat like a pig at night but hot flushes are very minimal now. I also had double chemo, so I think that would do it. I don't know how Tam would affect all this. Bet you're glad you asked now.....

[hamley]

My mx area is very pink today. I hope this isn't things going down hill for me. 6 more rads to go.

Cybele, sorry about your boob, it so horrible to have this now after all you've been through. Hang in there, you're over the worst.

Mandy, good luck with the gene thing.

BC, a bolus (I think I've spelt that right but maybe not) is a soft jelly looking rubbery thing (all technical terms, of course) that they lay over the area for ladies who've had an mx. It apparently somehow reflects the rads dosage in the top layer of skin. It's only for treatments 8-15 though.

Shellebelle, the dizzyness sounds awful.

Cress, how do you know you've been through the menopause. I'm having symptoms but don't know how to tell if it's the real thing or not. The thought of coming off Tam and finding I've got to go through it all again is too horrible to contemplate.

[Cressida]

Oh dear. We are not very good at getting over cancer and "moving on" are we? Really is rubbish that everyone thinks we are fine now and expects us to be more fun and not so whingy. Seems that having barbaric treatments for a seriously scary disease is not as easy as the pink and fluffy brigade would like think. Bahhh.

Mandy - regarding your "shrinkage" - I am collecting my dilators from the chemist tomorrow. Had to ask my GP in the end as the sexual health nurse is obsessed with my symptoms being caused psychologically. She almost convinced me (as I am not that sane frankly, and I do have a scar where my boob should be, and I have had my menopause early and I can't get a bra that fits, and I don't feel very "sexy" tbh.....). But, I have the refreshing honesty of you ladies to reasure me that it is a post chemo problem and I also watched a video clip on the Macmillan site saying it is common too. I have pretty much run out of a sense of embarrassment (anyone want me to take my top off?) and I would recommend you take a deep breath and ask too - one more thing you can get on your free prescriptions. Now I just need to get the energy together to "have a go"....

Can't remember anything else....

xxxx

[shellebelle]

Marie I too have rib pain - it comes and goes but can have it for weeks at a time. It feels like some of my ribs are badly bruised. As it is so common, I hope your mind can be put at ease, especially after you've spoken to the BC surgeon and oncologist.
Lolly Glad you're doing ok through rads, but sorry to hear you're having trouble with your hands. I only had the one dose of Docetaxel so any neuropathy I suffered following that soon recovered, however, I definitely noticed my hands are stiff and painful since starting Tamoxifen so can sympathise with Border Collies and am finding typing more of a challenge. Also have backache which is from arthritis in my spine that only came to light during chemo. It now seems to have become a permanent feature.
Hamley check you out......modelling!! I now have more hair than Jessie J, but still look like Paddy from Emmerdale for the rest of me 😞
Mandyp It's just not fair is it, coming this far and still feeling like crap. The dizziness and weakness that is plaguing me is so bad that I can't walk far without having to sit down and sometimes feel like I'm going to faint. I have a constant 'wobbly' feeling and it's getting me down. GP/Onclogist don't know what's going on so just keep swapping and changing pills about and doing more tests. At least having the tests have shown no signs of cancer spread to lungs/brain and so that's one positive to come out of this horrible situation. I think I may now be referred to a cardiologist and/or neurologist/endocrine team. Could end up with a full MOT by the end! I don't care, just want to feel ok and sooner rather than later.
Cybele I hope your symptoms improve soon too - you've had a rough ride and I feel for you. Plenty of rest, fluids, pampering and steroids x

[Border_Collies]

And another thing - Arthritic fingers won't let me (an ex legal secretary) type properly anymore. In the words of Morecambe and Wise " I hit all the right keys, but not necessarily in the right order!!" Should proof read but can't be bothered. I'll leave you to guess the no so deliberate mistakes, sorry,
B

[Border_Collies]

I have finished treatment however am now suffering again from constant backacke which is not cancer related as I've had it for about 2.5 years now. Went away completely during chemo -returned slightly during rads and the more normal I become doing everyday things the worse ity became. I have a twisted area in my spine and a twisted pelvis caused (they believe) by training dogs on my left side for 35 years. Suppose it's possible.

Manday I saw my surgeon early June and she wants to see me ahain in Oct/Nov when she will do a mammogram and examine me. It wasn't until after our meeting it occurred to me that when I presented with this last lump the mammogram showed CLEAR. No Cancer. It was only picked up on the ultra sound scan, so what is the point of just having a mammogram. I think I shall be insisting on a scan and letting them know my reasons why.

Apart from the above my life is completely back to normal. Hair is growing well, but because I cold capped I have like a halo around my head of new hairs sticking sgtraight up through the old. Hair feels much thicker but I just cannot get these hairs to behave themselves and lay down. At least they have come through straight. I once had visions of chemo curls pushing forth amongst the existing straight hair. My energy levels are good and I'm back dog training and doing the shows every weekend which means lots of driving. (Have finally got my confidence in driving back again). I also feel that the more normal things I do amongst normal people (non of whom know I had BC as I chose to tell no-one bar immediate family) the better I feel. I'm me again. Did however have to go to the dentist last week, and again next week and obviously they had to be told why I wasn't keeping my DenPlan appointments and they immediately launched into oh how are you? You're looking well. Tell us all about it. Did you have a Mx? Are you on medication etc etc etc. Came out of there feeling that I'd taken a massive step backwards emotionally and was surrounded with all things cancer again. It did however convince me that my decision to tell no-one was the correct decision for me

Hamley what is a "bolus"? Also it sounds as if your hair must be looking pretty spiffing if peo[ple are commenting on it. Good on yer!

Sorry about the cough Cybele but remember "It isn't the cough that carries you off" and I'll leave the rest to your imaginagtion.
Cressida how are you feeling now. How are your energy levels and has the Oracle come up with any more details?

Lolly I hope you get some help from the doctor with your hands. We just don't seem to be able to shed every single ache and paon, do we? There is always something to worry us.
B

[mandyp]

Meant to say eck not ECM!

Cybele just read your blog. Sorry to hear youre feeling so awful but good to hear I'm not only one with chatty lungs. I too have suffered with mild asthma so all makes sense. At least your team are taking you seriously. Lots of love m x

[mandyp]

Blimmen ECM. Thought we'd all be feeling ok by now but clearly not the case. Shellebelle like you, I feel pretty shocking. I have a persistent wheez that I'm am convinced is sinister. My back aches, I am seriously tired (not even tired, wasted!!!) and I can hardly walk as my feet are soooo painful. Oh yes and I can't even have sex as have shrunk considerably!!!!! Not even funny really. Today I can't even drag myself out of bed and I promised my daughter i would take her to tennis. And everyone I see keeps telling me how well I look!!!!!! Arghhhhh!

Rant over.

Off for gene thing on tuesday at Leeds. So we shall see. Maire - I have heard rib pain is really common after rads. Hopefully you will get some help from breast nurse and surgeon. Although every time I tell my onc about my concerns they seem to brush it off.

I asked about any further / regular tests in the future and was told that they dont do them. I would have thought that regular blood test would be useful??? What is everyone else doing?

Lots of love xxxx

[Cybele]

And things have been going from bad to worse...

'The Grim Reaper pops in for a nightcap': today's post on http://chemonights.blogspot.co.uk/