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Starting Chemo in December.2012

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Re: Starting Chemo in December.

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?
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Re: Starting Chemo in December.

Mandy - I was just reading back - was your appointment for gene testing or results? How did you get on?
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

double posted
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Re: Starting Chemo in December.

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!

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Re: Starting Chemo in December.

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".
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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..
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

hi
Could anyone tell me when to start hormone tablets i finished rads yesterday.
thanks
jenny xx
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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.
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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



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Re: Starting Chemo in December.

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



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Re: Starting Chemo in December.

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!
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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?

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Re: Starting Chemo in December.

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.
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

Ooops. That rule about the 40's is the wrong way around. Chemo brain goes on and on.
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Re: Starting Chemo in December.

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.....

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Re: Starting Chemo in December.

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.
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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.
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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
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Re: Starting Chemo in December.

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/
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Re: Starting Chemo in December.

Maire, I went to see my breast surgeon about my rib pains because I was worried that I may be doing harm when exercising; it hurt when I did the 'arm up the wall' things. He said that they have to leave some tissue (not breast tissue) in your chest that usually surronds the breast tissue otherwise there would just be a void. Because this was attached before my mx it took quite a bashing during the surgery and will take a long time to recover. The rib concerned is the one just below the fold under where my boob used to be.

Something great happened today. I went into Sainsburys for shopping and when I went through the check out the girl said to me 'I wish I was brave enough to have my hair cut that short, it looks great!'. It was certainly a confidence boost.

If anyone hasn't been on the 'look good, feel better' session, I would highly recommend that you look into getting on it. The goodies are fantastic, apparently worth about £250. I was asked to be the model (I don't get asked to model very often so I have to make the most of it) and it really was wonderful to be pampered.

I've done 9 rads now, with an addition of a thing called a bolus (?) which is to be used for the last 8 sessions. It was so cold when they put it on me that I jumped and they had to repoistion me. I wasn't Miss Popular. I'll ask them to warm it up from now on. I've just got some pinkness so far but live in hope it won't be too bad.
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Re: Starting Chemo in December.

Maire I'm sorry you're so worried and we are all on a knife edge with every new ache and pain. However, do you think that your rib problems could be anything to do with rads? I'm sure I can remember my rads onc saying that a lot of ladies experience weird sensations in their ribs after rads and sometimes this can go on indefinitely. In fact wen I went back for my 6 weeks check up he asked if I'd had any rib pain. Just a thoght.
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Re: Starting Chemo in December.

I've gone quiet because I am currently consumed with worry. Have got, not pain, but an ache in my ribs and I vague ache below my ribs. I am beside myself with worry that I have spread to bones and liver!!! I had no lymph node involvement so know that spread is unlikely but I just cannot stop going round and round in circles mentally. I am also very fuzzy headed and tired. Been to the doc and am seeing breast surgeon and then onc in a fortnight-routine visits. The only thing that will put my mind at rest is for either the ache to disappear (not happening) or to get multiple scans that are clear. Thought I'd bounced back but apparently not.

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Re: Starting Chemo in December.

hi,
i am doing fine since my last rads EXCEPT i am now being woken up at night with very painful hands going to go back to doctors again i cant live with this it hurts so much, read up on carpol tunnel and i have all the symptoms of that.

hope you are all feeling ok
lolly
xx
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Re: Starting Chemo in December.

My brain scan showed nothing of any great concern, other than an empty sella in my petuitary gland....or something like that....I didn't quite understand and the Oncologist was only reading from a report and as it wasn't his particular speciality, he wasn't sure whether this could be causing my dizziness so has gone off to liaise with a neurologist/endocrine person. My previous EGC's have shown a 'blip' on them. Not something that has rung any alarm bells so far, but looks like I am going to be referred to a caridologist for further investigations. As yet, no real answers to why I'm so blooming dizzy all the time, but have been told to stop Tamoxifen (again) for a 4 week period to rule in/out once and for all whether that is the culprit. The saga continues and until I'm fit enough to return to work, the groundhog days roll on.
Cress, I feel worse now than I did having chemo, so sympathise with you NOT feeling like you've had your weetabix.
On the plus side, I have a thick crop of very short hair now, and my radiotherapy burns (one on collar bone and small one on neck) are fading daily.
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Re: Starting Chemo in December.

Still wittering on about my thyroid. The Oracle needs to research everything. There is a link between menopause and thyroid problems. I have been plunged into chemo menopause. Something for others to be aware of. I am more knackered than I was on chemo and my recovery after FEC-T was much better than this. So if you are so tired you can hardly move and they tell you that it's "normal" get your full thyroid function tested.

I hope the silence of the thread is cos everyone is having a great time post cancer and has much better things to do.

xxx
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Re: Starting Chemo in December.

BC - well that burst my bubble. You are right, of course. I have now read several acedemic articles about interpreting thyroid function tests. It is my level of thyroid stimulting hormone that is low. The thing my GP seems to have done wrong is tell me a load of guff (presumably an attempt to reassure me) about why it might be low. No reason to suspect a period of over active thyroid that is "putting itself right". Low levels of thyroid stimulating hormone lead to the brain getting less thyroxine than it needs and, thus, you are knackered. It can be caused by a long term chronic illness or the use of opiate based pain killers (and some other stuff that I havn't had). The recommended way to proceed is to retest in 4 - 6 weeks before making any diagnosis. Sometimes GPs really do know what they are doing. They just need to resist trying to reassure patients with a load of nonsense.

Glad you had a nice holiday.
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Re: Starting Chemo in December.

Hi all
Back from holiday and feel I've benefited from the change of scene and mostly from spending a week with my kids and their OH's. Weather not bad, never kept us in and we managed to get sunburnt and have a couple pf beach BBQ's outside our cottage on the really sunny days. All six dogs had a wonderful time. Complete freedom for a week.

Sarah, glad the op went well and that mentally you're feeling better. Cybele sorry to hear of the burns. I had no problems at all but I am only a modest C cup. Let's hope nurse Ratchet does something for you tomorrow.

I feel for you Shebelle having to endure constant dizziness. I hope you get it sorted soon, and Lisalouw good luck with the rads.

Cress - glad you're not diabetic. However I've never heard of an overactive thyroid getting better by itself - drugs are usually needed and I would have thought an overactive thyroid would have made you rush about and get pop eyes etc. It's usually an underactive thyroid that makes you slow and sleepy. However. a whimp you are not and it's great that no medication is needed.

QD Hope you husband has some luck with his interviews. Must be so worrying for both of you. Fingers crossed.

Feels really strange not to have any hospital appointments any more. Got the dengtal hygenist tomorrow and the dentist next week and then I have to have my bi-annual eye test so I'll still be kept busy.
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Re: Starting Chemo in December.

Good news Sarah. Both re op and about feeling better psychologically.

I have spoken to GP today about my blood tests - apparently it looks like I have had an overactive thyriod, but it is getting better by itself. Could have been caused by the chemo or the infections that chemo let in. I am so pleased because (a) I am not diabetic (b) there is a reason that I have been feeling so tired and I am not just a whimp and (c) it does not need medical intervention. So I might actually start to feel better now. I just need to get it checked again in a month to make sure. Woohoo.

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Re: Starting Chemo in December.

Quick message to say WLE went well yesterday, actually a doddle in comparison to other surgeries I've had. Think the breast is a little deformed - I can see a shallow crater on the surface & the nipple points sideways a little, but hey, maybe not important in the great scheme of things. I'm actually feeling buoyant for the first time in ages!
My heart goes out to all of you experiencing discomfort with rads. Hang in there anyone who's feeling down, my 2 month depression appears to have lifted, counselling may be helping or it may just be time.
Good to hear positive results from Lisalou & QD.
Sarah.x
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Re: Starting Chemo in December.

I was just looking at Mejane's thread about the cold cap, and it made me feel sick just thinking about the cold cap.


Yesterday I read something in a novel about a woman with MS who had to go into hospital for some kind of IV infusion every month, and that made me feel sick, too.


I only have to get any kind of image in my mind of anything even resembling a chemo ward, and my stomach starts to churn.... it's weird.
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Re: Starting Chemo in December.

The burning and pain continues, so i just called the radiotherapy department and they have invited me to go in tomorrow morning to have my burn assessed by the nurse.

That will be the horrible 'there is no MAGIC CREAM' nurse, I expect. Still, if there's anything that can be done, presumably she will do it.

Profoundly depressed after 2 weeks of this.