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**Tamoxifen** the 30th thread !

996 replies

MaryAnnSingleton · 26/10/2012 15:32

Am wheeling the trolley over....

OP posts:
Copthallresident · 06/11/2012 13:34

smee When the research came out on Arimwhatever (see I can't remember names either) it was about two years after I had finished Tamoxifen but my Consultant was recommending it as by then I was deemed postmenopausal (whilst I was on Tamoxifen I had a strange thing where every 18 months or so I would have a really heavy period, my Gynae called them the last desperate shouts! ) However I had to have a bone density scan as bone loss is a side effect and the Osteopenia they found in my hips ruled it out. He was then recommending Rolisomething which has the same preventive effect on bone loss as Tamoxifen but the research was less clear on the benefits and we agreed it was probably marginal whether it was worth it.

On support groups, I never attended a formal one but in the end there were five of us who were put in touch through social networks, three with children at the same school. Meeting the friend who was diagnosed and treated at the same time, same Consultants too, was a huge huge support. We both had similar age children, husbands who struggled with it, and a pretty nasty prognosis. We laughed about it all, rubbished the statistics and had someone with whom to share the thoughts we could not inflict on our loved ones, we always say we went and looked over the cliff together, it become less scary and will always be a bond. The wider group are great too and we still all meet up but then we are all allergic to being pink, a survivor, brave ..... I assume everyone has read the Barbara Ehrenreich article? www.barbaraehrenreich.com/cancerland.htm We loved that!! It was great for our DCs too, the school were good and didn't make a fuss, they just wanted to be normal, but they also enjoyed the chance, especially the older ones, to be with other children who knew what it was like.

I've always thought that support groups were therefore a good thing. I was a bit peeved gigonde that my proper doctor, you know the senior partner you get to see if you ring at dawn weeks in advance, if there is an R in the month, was totally disinterested in a support group at our surgery, or even in putting people in touch with other who have been there, but perhaps expecting that you will relate to a random group of people enough for it to be a positive experience is being a bit optimistic. However I would say that if there is a chance it gives you even some of the support it gave us it's worth a shot.

KurriKurri The prospect of "Chemo brain" was the side effect that most upset me ahead of treatment . I could cope with losing boobs, being bald etc but having coped with Dyslexia all my life I couldn't face having an even worse memory!! Made me quite cross with my Oncy, there you are with all your cleverness and research and you are about to burn what little brain I have up!! So post treatment I threw in the dayjob and went and did an MA (at a proper RG/ 1994 uni esteemed on these threads) just to make sure my brain still worked, and I got a distinction, even in the exams which were always a problem for me, and now I'm on to a PhD. I still can't remember what day it is, but can't say whether that is Dys, chemo or age, but at the higher levels, irrelevant to day to day living, it works just fine Grin in spite of heroic levels of procrastination Wink

topsyturner · 06/11/2012 14:02

Will get Amber to check when she gets back from her gallivanting Grin , but am sure I read something about chemo killing off some of the brain cells that do remembering things ...

smee · 06/11/2012 14:04

Wow, Copthall. Brilliant to hear you're onto a PhD. That all sounds hugely life affirming. What's your subject?? Kurri wot d'you reckon? Me and you should get ourselves onto a degree course. Have always fancied a Masters. Smile

The whole bone density thing is scary. Just another annoyance to add to the mix. Oh and I love that article too. Smile

I heard on the radio, that jogging can create brain cells. Sounds a bit drastic though. Grin

KurriKurri · 06/11/2012 14:29

great article Copthall - I hadn't seen it before. And good luck with your PhD - that is pretty good going, well done Smile

Smee - I did a history Masters 30 years ago - and have completely forgotten everything about it Grin, - I'm sure I wrote some pretty snazzy dissertations too, but again I struggle to actually remember what they were about. I do remember going through some stinky dusty old documents on the very top floor of the University library - where all the strange people hung out Grin

I think if I did anything else it'd have to be purely for fun, I could probably put my psych. courses towards a general BA, I sometimes see OU courses I fancy - but they are £££££ Shock - they've doubled in price since I did mine.

Do you hear that topsy? - jogging is the way to go Grin I'll cheer you on from the side lines, as my big toe is a bit tired and I need to take it easy.

Just had a very frustrating conversation with Amazon helpline. They sent two things when I only ordered one. So I had to give both order numbers (order no's are about 20 digits long) and the bloke on the other end couldn't understand what I was saying every time I said '2' he said '3?' I was yelling 'no two....TWO' down the phone. Grin
Then he insisted on reading out my e-mail address and spelling my name out in police radio code 'A for alpha, E for echo' etc. all through my name, and he couldn't think of all the right code words, so there were long pauses while he was saying 'O for um O for----' and I was trying to stop myself shouting 'Omega, it's bloody Omega' at him Grin

Sometimesiwonder · 06/11/2012 14:31

Jogging???? FFS, I am screwed, then.

I can't remember words, names, anything really. It's a bit tricky when you write for a living.

Whoever asked me - yes, I finally got hold of weedman, thanks. He had a very attractive voice (dreamy)

Oh yes and the weed info was really interesting too, but not on the market yet, sadly....

Gigondas · 06/11/2012 14:38

My brain and concentration are also shot so heartening to hear not only one. In fact I do feel a bit all over the place as got up late and now back in bed. I wonder where my life went as dont seem to have energy to do anything much Sad. I know it's only a month and also that chemo effect cumulative but I am fed up with being under the weather (am also on anti biotics which probably doesn't help).

Funnily enough one of support nurses rang about support group at local hospital this Morning- I took details but will wait and see. My therapist was wary about groups for reasons you said smee (her actual reasoning being it can attract people Who need one to one help and that can skew the group dynamic). Think your accidental support group sounds far better copthall.

kurri did you also have to spend ages going through different options before you got thorough to The right person? Just finding the amazon phone number is a trial in itself.

Copthallresident · 06/11/2012 14:43

smee Go for it!! I haven't just enjoyed using my brain and finding it still works but I get to mix with so many different people, different perspectives on life etc. As Gigondas will testify our leafy suburb is very homogenous but my uni couldn't be less so. The MA was studying the History, Literature and Anthropology of another culture. Now I am studying how collective trauma is expressed in the literature of different cultures.... PhDs are a lonely business though, I would have quite liked to have gone on studying MAs ad infinitum but it would be a bit embarrassing signing on for another (I already had an MBA) let alone wheeled into the tutorial room for a twentieth....

I drew the line at trying to study the language, though I have a bit of the language from living there. I tried one taster session and it really reminded me of what it was like at school, everyone else assimilating it easily and moving on to put together sentences whilst I am still seeing stars on the first page! I couldn't say whether that was the chemo or the Dyslexia though, it always was a problem, hard to say if it is more so now.

topsyturner My Oncologist definitely pointed me in the direction of the research on chemo brain that was around 11 years ago . It showed that there was potentially an impact on all cognitive ability, not just memory, based on testing people before and after. I think there may have been some querying that just the general trauma and physical effects of tiredness, depression etc could have that temporary effect but I was under the impression it was becoming generally accepted. Obviously it comes under the heading "Side Effects the drug companies would prefer to suppress"

KurriKurri · 06/11/2012 14:45

Oh they keep the phone number very well hidden Gig. - it must be a State Secret Grin -
He did keep wandering off to consult with someone else, meanwhile putting me on 'hold' which was nice because obviously I can't get enough of Richard Clayderman. Hmm

Lack of energy was a big thing for me after chemo - I really sympathise. It is so frustrating, and again it makes you feel unlike yourself if you were an energetic person before. It does get better though, and a month is early days - but yes 'under the weather' is a very annoying place to be.

smee · 06/11/2012 15:08

That all sounds a bit impressive to me, Copthall. What language/ country was it, or have I missed that?

Gig, rest up. Sounds like you need to. You can help me decide what I should study. MA in fbs..? A doctorate in Slothful Working Practices..? Grin

Copthallresident · 06/11/2012 15:10

Gigondas I definitely remember that the tiredness and depression had really taken hold in that last month after my last treatment. Are you meaning a month since the last dose? So you are only just out of the normal cycle of recovery? I remember forcing myself out to a certain department store about three weeks after my last dose, end of the "bad week" when I dare not go out except to discover my white blood cell count had hit the floor again. I became terribly materialistic during chemo, something about being amongst designer things that was escaping to a totally different world. I am not normally a shopper at all Confused Big mistake, as soon as I got to the shop floor I started seeing stars but I didn't want to pass out in public so lunged for the loos and then spent ages trying to summon the energy to get back to the car, then as I left I started to pass out again and had to sit on the stairs to the Book Department, telling everyone I was fine, lovely place to sit (actually slightly better than the nearby place they give you to breastfeed Angry) The nice people in the Book Department helped me up the stairs to a chair and what was to hand? Ruth Picardie's biography!!! They say never read on in those Cancer books but actually I did look, realised she had it so much worse than me and, terrible I know Blush began to feel a bit better!! I must be a truly terrible person because watching 9/11 had the same effect when I was stuck in hospital being barrier nursed with an infection they couldn't identify after the first dose of chemo wiped out my immune system, at least I hadn't had to jump out of the 101st floor.....

Copthallresident · 06/11/2012 15:13

smee don't tell anyone, it kinda gives too much away and I do like like to stay under the illusion of being undercover but it was China / Mandarin.

topsyturner · 06/11/2012 15:48

Jogging ???

topsyturner · 06/11/2012 15:50

I think I will continue my studies into a doctorate in medicine .
I shall study at the University of Google Grin

Copthallresident · 06/11/2012 16:04

kurrismee Have you looked at the Birkbeck and Oxford Continuing Education courses? They are part of the credits system. Not sure how they compare on £££s but I know people who teach / have done their courses and would recommend them. Apparently the Oxford Online ones are quite amusing at first in that the Oxford name and the fact that anyone anywhere in the world can sign up means you get some "eccentrics" posting on the forum at first and the Oxford academics (and they are fellows) have to use all their creativity and intellect to come up with positive and encouraging comments, however they are demanding courses and after a couple of weeks it comes down to those who are serious about the course and quite good debates get going.

And I don't think a PhD is that impressive compared with finding out the Amazon phone number. All this posting is procrastination, not from my writing, but from doing battle with Eon, John Lewis, a kitchen company who clearly think that at 9 years old I should be getting a new kitchen not moaning that the one they fitted is falling apart even though they said it would last 20 years, cooker hood company (same), car tax, car service. I really resent the tyranny these people exert over your time.....

MaryAnnSingleton · 06/11/2012 18:25

oh my,all this education -am impressed,I would find studying v hard now I reckon.
I remember reading the Ruth Picardie book long before my dx,I've re read again from time to time.
Am feeling a bit queasy today but a piece of dh's cake has helped.

OP posts:
smee · 06/11/2012 19:28

Ooh, Mandarin that's very now, Copthall. How long did you live in China? It's alright you can whisper, your secret's safe with us. Smile

I have looked longingly at Birkbeck in the past. Need to get DS a bit older first I think as I have limited time to work due to 3.30 pick up and to add a degree onto that might be a stretch for now.

Our Dr Topsy's very highly qualified from all I've seen. Dr Amber's pretty impressive too. Wonder if she's having a good time..?

I read the Ruth Picardie book too. Wished I hadn't at the time, but glad now. Poor woman did go through it. Sad

Gig, hope you're feeling a bit brighter now and that the little Gig's are safely poured into bed.

MAS, how are your hands and feet? Are they any better?? Really hope so. How many drawings are you up to? Smile

Gracie's a bit quiet. Do you think she's skipped off into post treatment land, or just collapsed under a duvet?

Herrena · 06/11/2012 19:52

Hi ladies

Firstly, thanks for the kind words (although this thread does update fast and I can't keep up) about my DM's breast cancer diagnosis.

Secondly, I'd like to pick your brains please. She's got an appointment with the consultant on thurs but they stupidly haven't been able to schedule her an MRI that occurs BEFORE the appointment. So the consultant won't have anything to go on other than biopsy results I imagine. I think there will be discussion of treatment options though (chemo, basically). All we know so far from her somewhat garbled feedback is that it's grade 3 breast cancer (possibly lobular) and the consultant didn't think it had got to the lymph nodes.

I am going to attend the appointment with her on thurs. Are there any intelligent questions I should ask? I already want to ask about the genetic results from the biopsy (i.e. BRCA genes) - is that the kind of thing they should be able to tell me about? What would/did you ask?

TIA...

MaryAnnSingleton · 06/11/2012 19:54

hands and feet ok,hands are a bit sore along the creases in my fingers -they are so dry,despite copious moisturiser. If I wanted more Domperidone for nausea,would I ask the chemo unit or my GP do you think ?

OP posts:
Gigondas · 06/11/2012 19:54

Yes feeling bit better- it helps to hear that others struggled after chemo (its only four weeks) . I did smile a bit about sitting on stairs in dept store copthall. The studying is very impressive too.

Reckon gracie is recovering as I seem to remember feeling hammered after rads finished and skin got more sore.

topsy I thought you were professor of orange studies and foreign detectives at The google university.

mas are you taking the Domperidone? That and little bits of food and often does help. I made more cheese biscuits so would offer those up.

From look of fb postings and pics amber is having a great time.

MaryAnnSingleton · 06/11/2012 20:02

yes, amber is in Egypt - sounds great !
Eating snippets does make the nausea feel better- and cheese biscuits would be the very thing- again,salty stuff is what I crave. Am taking domperidone but forgot to ask for more
smee I reckon I've done about 160 drawings now...a friend has asked me to do a picture too,so hope I can manage that.
Herrena I guess I'd just ask what the treatment plan is and results from biopsy- you can ask for the printed details (I asked for my path results and got the lab report) Whether the think the cancer is ER+ and HER2+ or not...

OP posts:
Gigondas · 06/11/2012 20:09

I would try chemo unit- ime they are slicker about getting you prescription quickly. My Gp just likes to talk at me so she feels like she is doing right thing Hmm.

I found this get on The wine

smee · 06/11/2012 20:10

MAS, ask whichever's easiest to get to. One of the few upsides of chemo is it gets you round the doctor's appointment system. Are you still feeling sick then? Sad

Herrena, the genetic testing's separate and done by a different consultant. You have to have a pre-consult to discuss it all before they'll even take the blood to test. You also have to have sufficient points to be tested. There's a scale dependent on number of women in the family and it's quite draconian. Both my mother and I have been affected, but I didn't have sufficient. I had to say that a Great Aunt had probably had BC to get them to test. Hmm

I think at the appt, the key thing is to listen and take notes for her. Ask her hormone status to see if she's eligible for Tamoxifen or Herceptin. Ask timescales too in terms of treatment, so if chemo how many/ how long will each cycle take? If Rads, then how many? I found it really helpful to know how the months ahead would pan out. I'd bet she'll feel better once she knows what she's facing though. Somehow it helps to have a plan. Smile

smee · 06/11/2012 20:14

Gig, great link. Glug, glug.. Smile

mosschops30 · 06/11/2012 20:22

Hello ladies, im just dipping my toe in the water here, was signposted from my other thread.
Im having a mammogram for the first time tonirrw and ultrasound.

Very nervous and trying not to imagine the worst

smee · 06/11/2012 20:24

Hello mosschops. Sit down with us and let us hold your hand. Are you going to a Breast Clinic, or is it the screening programme?