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anyone any knowledge of Megestrol Acetate for hormonal dependent cancers?

28 replies

dizzydixies · 28/03/2008 18:54

anyone?

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dizzydixies · 28/03/2008 20:03

bump - anyone?

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fledtoscotland · 28/03/2008 22:04

i work in a cancer ward and it is prescribed for some cancers (breast and gyn off the top of my head). what do you want to know?

dizzydixies · 29/03/2008 08:37

hi fledtoscotland

its the latest thing they are trying for my mum as nothing else seems to have worked. The cons said he doesn't think it will do any good but they'll try it anyway I don't know what to make of it anymore and my parents don't seem to be asking the right questions

does it have known side affects? I know most medicines have pages and pages of possible side affects but just wondered what to expect with this treatment

thanks

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fledtoscotland · 29/03/2008 13:20

hi DD - from my experience it isnt an uncommon treatment but i'm not sure of the success rate. let me double check the common side effects and will get back to you tonight (am off to a 2nd birthday party now).

Blandmum · 29/03/2008 13:23

It is a progestogen. It has steroid like effects and can help with a sense of well being/appetite etc

Dh was on it for a short while and he has pancreatic cancer. They have switched him to a 'regular' steroid now.

The megestrol didn't have any major side effects on him, but did mess up his blood sugars a little (he is diabetic because of the tumour)

dizzydixies · 29/03/2008 15:35

thanks guys
MB am sorry to hear what your dh is going through, I hope the steroids are working better for him

Fled I just don't understand WHY she's been given them am beginning to think its as a last gasp effort rather than telling her there is nothing else to be done

am trying to resist googling it all as have freaked myself out on several occasions now re my mothers health and none of it has helped

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Blandmum · 29/03/2008 15:41

From dh's experience,when they don't think that there is anything more to be done, they tell you and don't offer you anything. This happened to us in the run up to christmas, then the doctor read of a new study and offered dh a second line treatment.

The days of things being hidden from the patients have long gone, and dh's consultant has been totally honest with us both from the outset, and involves us in the decision making about his treatment.

One other thing, even if this treatment is paliative (symptom reducing) rather than curative not only will it give your mother a better quality of life but more life. Good paliative care can extend life a little.

I hope that things go well for your mum

Blandmum · 29/03/2008 15:42

Oh and don't google. You will scare youself shitless and upset yourself.

Contact Macmillan or cancer Bacup, they will give you honest, supportive advice

dizzydixies · 29/03/2008 15:47

thank you, was thinking of going to our local Maggies centre, they apparently have excellent relative care there - she refuses to go to hers but then thats her choice

this is her 4th cancer in 5 years and she's had several doses of chemo/radio therapy and more operations than I care to remember - we're now at the point of seeking advice from a geneticist (sp?) and no more operations allowed as she she's not in a strong enough state to cope with it

I think these pills are maybe a bridging thing, cons says theres no more to be done chemo wise and operation isn't an option at the moment

doesn't help when she won't ask questions re her treatment and brother and I are left wondering, I know its her choice and have to respect that but its not easy on us either, esp him as he is biologically related and depending on results he'll have to start getting checked too

thank you for your replies, am wishing all the very best for your dh too

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fledtoscotland · 29/03/2008 21:03

sorry dizzy - just logged on. please dont scare yourself and going to the maggies centre is an excellent idea. megace (megestrol) is a progesterone. i have no experience of it being used for pancreatic cancers - i have only seen it prescribed for breast and ovarian cancers ie cancers that are hormone receptive. i think the theory is that these cancers have a positive response (ie grow) with oestrogen so but using progesterone, it may reduce the tumour. i dont know any specific success rate as i dont work in a specific breast unit (that is a different ward) but my understanding is that different breast cancers are responsive to different hormones. you will have heard of herceptin, well that is also hormone specific which is why it isnt a universal breast cancer treatment. it depends on the type of cancer your have (or your mum has).

as with all hormone treatments, the side effects tend to be weight gain, nausea, and pmt symptoms.

dont know why your consultant has suggested he is prescribing a treatment that may not work. its sort of the wrong attitude to have in this line of work.

questions your parents should ask... um, possibly try to find out the type of tumour, its staging (how advanced it is as that will affect the treatment on offer), why the consultant doesnt think megace will work if he's prescribing it?

HTH xx

dizzydixies · 29/03/2008 21:15

hi fledtoscotland

am not sure if he HAS prescribed it for that its what am wondering as my mum won't ask the questions you've recommended.

I haven't met this oncologist so don't feel I can phone as ask myself. I know the bowel consultant and he has previously explained things to me but its not his 'area' so don't feel right phoning him again if you see what I mean?

she's had bowel/colon cancer which has been treated with several horrific operations at rosshall

breast/lymph cancer which was chemo and radiotherapy at great western in glasgow

cancerous lump cut out of leg

and this latest one is some form of ovarian cancer which has not responded to the chemo, they can't get to it with radiotherapy because it would cause untold damage to stomach etc and the surgeon won't operate as she's not fully recovered/strong enough from last op which was to remove initial tumor which has grown back and increased in size

there are also two new masses in her abdomen and two new ones in her lungs but they're unknown what they are - this last lot are all at ross hall but she's been in and out of RAH as well

am sorry to offload all this but not being medically trained you can see why I'm confused now

thank you for taking time to explain it to me though, as I said to martinbishop am fed up googling as end up completely freaked and confused.

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fledtoscotland · 29/03/2008 21:35

its a small world. i work at hairmyres in east kilbride and used to work in the victoria infirmary. would go to the beatson but its the other side of the city for me. which bowel consultant do you know? i used to work in colorectal.

without knowing the exact details of the "masses" etc, its difficult to say but if the ovarian cancer may be operable, they could be thinking of using drugs to reduce it to an operable size once she is fit enough.

phoning the oncologist is a good idea - even just to ask him general questions about the proposed treatment. maybe you could arrange a meeting with your mum. usually there is a specialist nurse working with the oncologist. she may be able to help and your mum so your arent so freaked out/confused.

fledtoscotland · 29/03/2008 21:37

sorry but also why rosshall? didnt know they normally dealt with oncology there.

dizzydixies · 29/03/2008 21:39

lol - closer than you think we hail from carmunnock originally, still have a few there

its Mr Porteous who's dealt mainly with mum and been very good to me as he knows I live in NE Fife so have to journey up and down

my mother lives in denial and will not have any kind of conversation like it - she's been like this her whole life with everything

am afraid she's of the generation not to make a fuss/bother people and it drives me demented - my brother just goes along with it so I always end up looking like the antagonist (sp)

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dizzydixies · 29/03/2008 21:41

she is using her private insurance this time, she finds it more relaxing to have her own room and my dad can come in park and stay in with her where are going in and out of the western causes them more problems - he doesn't keep the best either but insists on doing everything/taking her to all her apts etc

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dizzydixies · 29/03/2008 21:43

wasn't anything to do with the service she received at the western, they were excellent, was just for convience purposes tbh

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fledtoscotland · 29/03/2008 21:45

dont know him i'm afraid. unfortunately many people with cancer do have a degree of denial and by not talking about it means it isnt real to them. as for your brother, most men like a quiet life.

if i were in your position, i would phone the oncologist and express your concerns/fears/worries. he wont be able to talk about your mum's illness in specific terms (patient confidentiality) but may be able to reassure you. also arranging a meeting with him next time you are down would be a possibility. are you your mums next of kin? oncologists are used to denial and head-in-the-sand situations so he should (if you are NOK) discuss your mums health with you if she OK's it.

please dont use google - the internet is a fab tool but can scare you witless.

Neverenough · 29/03/2008 21:47

Talk to your Mum, ask her for her consent to talk to the Oncologist and get her to either tell him or put it in writing. It is your Mum's right to want to know as much or as little as she wishes, and also if you haven't been with her you can't know how the conversation went.
I am a GP and my father is medical too, but when my mother was put on a trial drug which my husband(a haemato-oncologist!) knew was rubbish, she was furious when we started questioning her-she had discussed it enough for her and didn't want any more chemo but was happy to trial something.
I am sorry that your Mum is so ill.
Your job is to support her in her choices really, hard though that is sometimes.

dizzydixies · 29/03/2008 21:50

dad is NOK and he is just as bad tbh
when she was in RAH once she was in a terrible state and nothing was being done, I said I was on way down to speak to consultant and ask what the plan was (she's had numerous ops for adhesions after her initial bowel/colon cancer) and he informed me I had no right and it would break my mother's heart to know I was 'intefering' its just the way they are - cannot accept that even when 31yrs old with house, mortgage, dh, dc and a lawnmower I can have an adult conversation with someone!

brother and I had decided that if we still weren't sure what was going on after last meeting with cons then we would phone him and ask - he has since decided he's not doing that so it will fall to me again

am staying well away from google but thanks

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dizzydixies · 29/03/2008 21:53

thanks neverenough I think the main problem is that dh keeps offering to try to transer and move back through so we can be closer. At the moment I'm doing 2hr return trips in one day with the kids in tow and am pg with dc3 and working part time so can't afford it long term

if we DO move we'll be able to afford a shed and nowhere decent but at least I may be able to help out more

its hard to support her when she still treats me like a 10yr old and won't tell us whats going on but I appreciate what you're saying about her choice of how much she wants to know

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fledtoscotland · 29/03/2008 21:57

firstly, phone the oncologist and tell him what's going on. although neverenough is right saying its your job to support her choices, cancer brings out so many emotions in all involved and some people want knowledge to help them deal with the situation whereas others think the inevitable will happen whether you know about it or not. does that make sense?

also most parents cant accept their children have got a life. my mum still checks i eat properly and i;m 33, mortgage, husband, ds #2 on the way and reasonably responsible job. i totally agree that any DIY tool is far superior to most family members to having a sensible conversation with.

after you have phoned the consultant, you will be in a better position to judge what to do next. i he is suggesting more treatment, then you can broach that with your parents. if he is suggesting palliation, then you can talk to them about that. BTW - palliation does not mean dying. it means symptom control rather than curative treatment.

head up and have a large drink.

dizzydixies · 29/03/2008 21:59

as soon as this baby is out in july I intend on having a very large bucket of wine, bf or not!!

thank you for everything, really helps to know am not going mad

will probably unknowingly trip over you at caulder glen or the heritage park one day lol

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fledtoscotland · 29/03/2008 22:02

well think of me in july having your bucket of wine. i've got to wait til september. maybe see you at caulderglen - i'm the stressed out one with two muddy dogs and DS trying to copy them in the mud

hope you get things sorted

dizzydixies · 29/03/2008 22:06

well will have 2 buckets - one for you too! Am 30th july so may well be into aug before I crack them open

am easy to spot too - will have my two aunts in tow and manky black dog running riot whilst I shout like a fishwife at dd1 and dd2 for legging it down the hill to the park bit as I waddle after them lol

night

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BecauseImWorthIt · 29/03/2008 22:13

Wow - you have a lawnmower!

Sorry Dizzydixies to hear about your mum. My mum died from advanced breast cancer almost 4 years ago (10 April), and one of the most frustrating things was the distance between us. She was in Leeds, I'm in London.

There was obviously a geographic restriction but also, because we weren't with her all the time, we had to think very carefully about visiting because of introducing germs/risk of infection during her chemo.

And during all her illness/treatment, she insisted on treating me as a child, rather than an equal and really telling me what was going on. This despite the fact that we were very, very close. I know it was because she didn't want to upset/hurt me, but I so wish she had really told me what was going on, and confided how she was feeling, etc.

I can't offer you any practical help but just wanted to give you some emotional support. I wish I had been able to talk to her doctors. Unfortunately, my mum died very suddenly from an infection contracted during her first bout of her second lot of chemotherapy.

So - if I were you - I'd be doing whatever I could to talk to your mum's doctors.

Good luck.