Kiwi ladies who need encouragment, but all welcome.
Comments
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Oh. Re the tamoxifen- it also made me go down a size boob wise & my monthly visit was much lighter!
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Hey Cruise. LOL your machine looks familiar. Heres what I know about Tamox. (Im a bit rusty) I did Tamox for 2 years before moving onto Arimidex (an AI) . It is generally given to pre-menopausal woman as the AI's (aromotase inhibitors) do NOT work unless you are post menopause. You take Tamox for estrogen positive tumors. I can't remember about progesterone. Theres one thing that pricks my ears up in your case. Its not unheard of but very few woman on these boards have Estrog- Progest + Her2- status and also your dx says you're triple negative. You might want to query this and get more info on this from the med team. You certainly need some clarification here. There is a Tamox thread here at BCO if you want to take a look in there.
Tamox is not without side effects. Sometimes serious enough for woman to quit taking it. The worst ones are : Theres about a 2% chance (i think) of getting uterine cancer. It can cause thickening of the uterus. It can give you headaches and hot flushes. The upside is it can increase your bone density unlike the AI's.
None of these big guns are to be taken lightly and each woman needs to weigh up the good outweighing the bad. To do that means you need to be informed to make the right decision based on what YOU want. The AI's are very slightly more efficacious than Tamox but have their own nasty side effects like seriously aching joints and bone loss. All this is weighed up trying to figure out the lesser of 2 evils. The risk factor and QOL (quality of life)
HTHs Let us know how you get on. Hugs.0 -
Hi kt, ... interesting you had a bit of bone loss on Tamox. I don't remember that being a side effect but it very well might be in a small amount of women. Thats great those thin lizzys are at least helping and are OK for a couple of hours while youre still healing. See I told you though that going without is BLISS
.... OK, maybe not when we want those all important lumps to show, but hey, thats not all the time.
Kruise another one women complain of frequently is weight gain. For me personally I seemed to tolerate it OK but did have some mild side effects. I heard this both from my med team and here on these boards: You can tell Tamox is working by the fact you get hot flashes. I don't know how they come to that conclusion, but its fairly widely acknowledged.0 -
Hi Musical.
There are some studies done on bone loss in premenopausal women on tamoxifen. I've pasted a link below.
I didn't know about it either till I had a Dexa bone scan & found I was osteopenic.0 -
Hi kt. Thanks for your link and any correction if I've got anything wrong.
This study looks to be very old, in relation to medical studies. It says 1996. I was told that tamoxifen has a small benefit in relation to bone density. I don't remember anything about whether this difference was dependent on whether youre post meno or pre meno as described in this document but that is interesting for sure. I MAY have been told but just "missed it" as we all do when trying to take in so much.
In looking this up Im reminded of a couple of other things. Theres an increased risk of clots, especially with surgery. After discussion with med team, I remember stopping 2 weeks before surgery and about a further week or so post surgery.
Heres some excerpts from a NZ data sheet .pdf. I havent got the link but have got the date and whose article it is. I couldn't see anything about bone loss or increase.
Edit: (bold italics below, mine) Kruise, I've seen in this document where there is a place for using Tamox on Neg tumors, even though it is stated it is primarily for estrogen positive tumors. Since you have some positive nodes, in the overall scheme of things, your med team would have taken all into account and come up with a plan unique to you.
FILE NAME: tamoxifensandoztab.pdf
QUOTE:
Name and address
Novartis New Zealand Limited
Private Bag 65904 Mairangi Bay
Auckland 0754
Telephone: (09) 361 8100
Date of preparation
October 2010
Mechanism of action
In breast cancer patients, at the tumour level, tamoxifen acts primarily as an antiestrogen, preventing
estrogen binding to the estrogen receptor. In women with estrogen receptor-positive/unknown breast
tumours, adjuvant tamoxifen has been shown to significantly reduce recurrence of the disease and
improve 10 year survival, achieving a significantly greater effect with five years treatment than with 1
or 2 years treatment. These benefits appear to be largely irrespective of age, menopausal status,
tamoxifen dose and additional chemotherapy. However, clinical studies have also shown some
benefit in oestrogen receptor negative tumours in patients both with early and advanced disease
which may indicate other mechanisms of action.
Warnings and precautions
According to one study, women who have taken unopposed estrogen therapy, who are obese, or who
are continuing to take tamoxifen after therapy for more than 5 years may be at greater risk for
endometrial cancer and consideration should be given to closer monitoring of these groups.
A number of second primary tumours, occurring at sites other than the endometrium and the opposite
breast, have been reported in clinical trials, following the treatment of breast cancer patients with
tamoxifen. No causal link has been established and the clinical significance of these observations
remains unclear.
Retinopathy and keratopathy may occur and patients should be asked to report the following
symptoms of ocular damage without delay:
Adverse affects
Cataracts have commonly been reported in association with the administration of tamoxifen.
Uterine fibroids, endometriosis and other endometrial changes including hyperplasia and polyps have
been reported.
Cystic ovarian swellings have occasionally been observed in women receiving tamoxifen.
An increased incidence of endometrial cancer and uterine sarcoma (mostly malignant mixed Mullerian
tumours) has been reported in association with tamoxifen treatment.
There is evidence of an increased incidence of ischaemic cerebrovascular events
and thromboembolic events, including deep vein thrombosis and pulmonary embolism, occurring
commonly during tamoxifen therapy.
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Thanks kt and musical for the info. I WILL do a bit more researching too - and read some of the threads on here.
It has just come out of the blue really so I guess the more info I find out the better. I do presume they do have their reasons for wanting me to take it and I'm sure if the possible benefit wasn't greater than the side effect risk profile they wouldn't be wanting me to take it.
He said I can have a week or so recovery from finishing rads but then wants me to start it next week some time so I have a week or so to get my facts and figures sorted :-)
I actually thought I had gone through menopause already with the AC treatment - as do suffer hot flushes, night sweats and haven't had a period since but he said that there is a chance that my body could still start up again. I really don't think so though. He just made some comment like 'You can't get pregnant on Tamox' but is he stating a fact with that or advising that I better use contraception as well because it's not a good idea to let myself get pregnant...hmmmmm ....confusing. I certainly don't want to get pregnant and prior to bc had a Mirena which I'm sure caused the bc to grow especially now they tell me there was a small progesterone receptor amount.
Nothing is ever simple is it???
K. xx0 -
Kruse, youre right, simple and BC don't belong in the same sentence.
Worse, sometimes we soooo just don't want to study this or just cant take anymore in. We're all different. I'm sooo grateful to my hubby who was able to string stuff together and be intelligent about things when I wasn't.
"but he said that there is a chance that my body could still start up again."
Yea the burning question is whether chemopause is permanent or not. With me it wasn't. Just thought I'd say that. Sometime, i think just after chemo, they did a blood test which supposedly showed I was post meno. I wasn't, so they deemed me peri meno, hence tamox for 2 years. Didnt want to risk no benefit from AI tx . You absolutely must be post meno for the AIs.
" 'You can't get pregnant on Tamox' but is he stating a fact with that or advising that I better use contraception as well because it's not a good idea to let myself get pregnant...hmmmmm ....confusing."
Heres a little more from the pdf. regarding pregnancy. It appears you can become pregnant. Again, emphasis mine.
QUOTE:
Women should be advised not to become pregnant whilst taking tamoxifen and should use barrier or
other non-hormonal contraceptive methods if sexually active. Premenopausal patients must be
carefully examined before treatment to exclude pregnancy. Women should be informed of the
potential risks to the foetus, should they become pregnant whilst taking tamoxifen or within two
months of cessation of therapy.
UNQUOTE0 -
Hello All
I too refused to wear pink on Breast Cancer day. I met up with friends for a wine and they were in pink and wondering why i wasnt. I didnt have the heart to tell them that its not about the pink, fluffy, good vibes every one likes to relate too. For me it was hideous, raw, sore and I was bereft at being so disfigured. Still now, after a year, I have an aching arm, scar tissue build up and nerve damage. I have severe pain where the port and drain was. However, because of this pain I have recently had an MRI and 2 weeks ago a head to toe bone scan. All good, no mets detected. Next week Im having a muscoskeletel ultrasound on this area close to my ribs. I then see my surgeon again and he will decide whats to be done with me lol. I have been off work for a year and a month so far. Hopefully by next Feb I will be sorted and will be able to return to my old life with 2 breasts that look normal and a nipple. Thank You for listening to me and good luck to all those continuing on this journey. I loved the pic of the little calf too. How wonderful to get out there in nature and be part of the ebb and flow of life. You are all so brave and inspiring.0 -
Hi Patc,
I hope that your pain can be sorted out. Hope its nothing major causing it, nerve damage?
It will be nice to be back to normal for sure (or a comfortable new normal)...
Kruise, I only went into chemopause for 3 months after AC. Don't be scared of Tamox- as I said it was easy for me, if you do it I hope its easy for you. Just make sure you're aware of possible SEs, then you can treat or stop as needed (eg vit D, Calcium or whatever onc recommends to maintain bone health). Most other SEs like clots, uterine c are pretty rare
Musical- there sure is a lot to read about, anyway search tam & premeno bone health- there are a few studies mentioned on the board too. Not sure how new they are, but since my scan showed osteopenia I thought it was interesting
So, I had my first 'proper' day back at work...I'm tired & a litttle tender but ok. The thin lizzie bra worked ok- might try the smaller size next time & see if it helps it not to ride up..(my only real complaint- don't really want the 'boob inserts' up by my collar bones!)
Take care all
kt0 -
kt, according to the NZ data sheet, deep thrombosis isn't rare. It actually says common. Also, the threat of uterine cancer doesn't stop once you stop Tamox. These are potentially very dangerous side effects especially to people who are predisposed to these more than others. My point is not to scare people off but give an informed choice. I have other things to research now, some Im about done with Tamox. I just put this up to be of help.0
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i am on tams, and have been ok on them apart from normal s/e, but the big thing was that with me not having a thyroid gland, they should of put my thyroid dosage up at the time and did not, so that left me the tamoxifen, stopping the thyroid from absorbing into my body and i puffed up like a balloon, my neck and face was all puffy, and my breathing was terrible, some people at mums party wondered if i was going to need oxygen, the heaviness in me breathing, the thyroid doctor said, they should of increased that at the beginning when i took them, i am now much better, my blood pressure was very high and my blood sugars have all dropped and i go to the medical gym too. its for people like me, who have medical issues with diabetes and so on and that is helping. the thyroid doc said it was potentially life threatening and told me that while i was away and felt un well to to A E in Whangarei and they contact him. apart from that i have not had too much problem. they should raised the dose, like they would if i was pregnant. i am much better now. the number of times i was makingnthe bed and had to lie on it before i had finished, i was so tired.
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i am also going to Gyny on 11th Dec as my monthlys started up again and going to have an ultra sound at some point, he wants to check lining of uterus. i know its needed, but i hope its not one they fill you up with fluid and they make you hold it while they insert that thing inside you, i had one years ago and it was not nice. transvaginal ultra sound, it was. oh Gosh.
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news today, has item,a machine that is used in chemo to stop hair loss. it is at mater hospital and they had a lady with BC doing the trial and i don't know how many treatments she has had, but her hair has remained with her, its a hat or helmet you wear that's cooled right down and its the coolness that helps the hair to remain in place. very interesting that would be progress for alot of ladies who have been against chemo for those kind of reasons.. progress happening. it could be used for male cancers and uterine cancers soon to, but just at the moment, breast cancer is getting the trial. by the looks of it.
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Regarding the Tamox and thyroid, they should have had that sorted. It's negligence.
Have you got a link regarding the hair tx?0 -
Good news about the hair treatment machine. Damn should of got breast cancer next year instead!!!! 😜😜😣
I'm on a mission of detox and healing now. My body is spinning I think with having crossed the imaginary finish line. I think it has just gone 'thud'. I have bugger all energy and low vitality. Any hints on how you have picked yourself up to keep on keeping on. Am going to try acupuncture next week.0 -
No we heard it on the news at lunch time on tv, but they saying its called cold caps and been around for ages. and Trish was saying there is a posting in the chemo section about it. the way they talked on the news as it was a new experiment. if thats what you are referring to. i had never heard about it before. it is in Ausy and racy used it. i believe. its the only time i heard was today and we caught it half way through.
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Hi all haven't posted for awhile. Taxol continues to go well with my only real side effect being exhaustion 2 days after treatment. It looks like they may continue it for longer than the usual 12 weeks with me. I've already lost my hair and actually quite enjoy being bald but had a little read on the cold caps. You can rent them from http://www.penguincoldcaps.co.nz. I think they've been around along time everywhere but New Zealand.
Hope everyone is going well and enjoying the warmer weather.0 -
Yeah shazza youre right. Cold caps aren't breaking news. In fact most people who've done chemo know they've been around for a long time. As for availability in NZ dunno. Theres a thread here that's been going for a long time and its still going. I didn't look into it much since I had too much to think of at the time and I'd just had my hair mowed off from chemo anyway.0
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sorry, i am abit green to some of these gadgets and as i did not have chemo, it would not of been an issue, infact there were alot of things i was not told about and i probably should of asked. one thing i did ask was about the DVT as my mum had it bad most of her life and 22 years old one went to her heart abit jammed there and she was actually shopping in the middle of the city in Auckland and collasped in a shop. it was a close call and infact i was not born til she was 28.but i told the hospital about it and it was a family weakness, like thyroid is and they did not think it would be an issue for me with the tamoxifen. i was worried, but they are the pro's,( i think.)
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Morning all.
Said on the Aussie thread that the cold caps have been here for years . People were suggesting them when I had chemo 6 years ago. I think what the news item was about is a machine which is being trialled - its not approved in the US yet.
Think I am getting over my chest infection thank goodness. Had better get showered etc and on with my day.
Big hugs to all.0 -
Chest infections are the pits. Glad youre getting over yours. I still have traces of that cough that makes your eyes water (grrrr) ...it deosnt give up easily.
Shazza, hope you do well on your chemo. Yeah one good thing is your hair is super easy to do lol....thats one thing we all have in common (aside from cold caps). However we know that BC is such a broad spectrum of possibilities with so many different tx's. Im not familiar with the taxanes as I did 4 rounds of FEC. Can't even remember what those long pharmy names are. I post now and then on a neuropathy (rant) thread. Hope you don't have that to deal with. Someone said FEC indeed can cause PN but I was told different but apparently the taxanes commonly cause it. Anyway, mine was pre chemo and it SUX.
Kruise, hope you are doing better today. I remember dragging my butt down the road regardless of how slow I was (and it was about 25% my usual speed but too bad). We do what we can and thats good enough for me. Do you have a nice day in Wellgtn? We've had a batch of quite cold SEers in PN. Looks like its coming right today though.
Hope everyones doing well.0 -
one thing i keep forgetting to ask musical, how is your mum these days? hope she is doing ok.
am going out with hubby today in truck, 2 weeks and it will be over for at least the drivers, one run only that BIL, will do. i don't drink alcahol, but i think i will buy some champayne and celebrate. the freight is getting heavy now Christmas is approaching.. When you got new drivers and they unsure of area, its only a relief one, but he got truck stuck in marton in some farmers paddock and went down a one way street wrong way and hit a car that only been on road for a week. Hubby is pulling his hair out. so to speak. we have got to the stage of counting how many sleeps we don't get. i will go out and assist hubby,he needs me more than the gym does today with his splitting headache he has. catch ya, later xxx
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Thanks for asking Annette. Not so good, she's in secure care now, but has a body thats still amazing. All I can say is Dementia IS THE PITS. I cant believe how much it IS THE PITS. It's another one of those "if you havent been there you can't possibly know what it's like". Meaning, I can't possibly know how my poor mum feels but Im trying. It's unimaginably hard on families.0 -
Hi all.
TGIF! I'm so glad to have my first days back at work behind me- now for the weekend
I think we are having the alpacas shorn, not sure exactly when. I'm sure they'll appreciate it now its getting warmer.
Kruise, you have to pace yourself at first- it takes at least as long as your in treatment to get over treatment (if you see what I mean)...make sure you do some fun stuff just for you
Shazza, Im glad things are going ok for you too. I hope it continues to be doable!
Alyson, I'm glad you're recovering- did I read somewhere you're going to the Aussie get together, sounds like fun
Midnight, you must be relieved all that trucking business is nearly over! Champagne definitely sounds like a good idea!
Musical- I feel for you watching your mother go thru dementia
Hopefully she's not too aware of it herself?
Well, have a good weekend!
kt0 -
kt, please give your alpacas a pat for me? I soooo love their eyes. At the moment our 2 fully grown sheep (really they are just hoggetts) are NUTS! Lately theyre doing that sproinging thing in the evenings and bound up to the paddock next door that has cows in it. They all take off booting out, tails in the air, and hubby and I crack up! They must be all feeling good. Too much grass at the moment and they are piling on the weight. They need to go in the freezer but we need some replacements for the grass.0 -
Freshly shorn alpacas & one of the cats.
Hope your weekends have gone well
kt0 -
And here's a pic showing those big eyes you like Musical0 -
Aw that is cute. is it a girl for boy. one of ours had a new born today to, except mama was having a job trying to get him out, so BIL and Hubby had to help her and its ok. Alpacas are very lovely animals, they are alot easier than sheep. they don'y get fly strike and you don't have to crutch them, we had our shaun earlier this year, he did it like the sheep, not on a table. we had two farm students help from massey. they are very inquisitive the way they put there necks up and look at whats going on. i notice most animals are nosey, cows are. not so much sheep though, they mind their own bussiness and keep doing what they doing. some of our alpacas need the dentist badly, buck teeth, they need braces, lol. but the eyes are so soft and lovely, calves have lovely eyes too when they small, big brown eyes. its a very cute baby, i can't spell the name, crear,,???? lol. lol the cat and alapacs are cute too, i might have to have to save that too.
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lol. your baby is so cute, KT, i have made him my screen picture. have been hunting for a nice pic. and that is so lovely to look at. and now he will be there for a long time. has it got a name?
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They are lovely piks kt. Thankyou for posting them. They look well shorn too and the animals look in good nick. I don't know much about them,(except their eyes are so gorgeous) as Im more familiar with the usual farm animals of old. I love cows eyes too. Especially jersey cows. As for calves....oh sooo cute.
Well thats another busy weekend over. Seems to be that way these days.0
