Goserelin injections

Hi all,

Only on this forum since august and have learnt so much from all of you.

I finally asked for a name of my cancer and this is what they called it.

Metastatic undifferentiated stromal sex cord tumour.

After 18 months with two rounds of chemo treatment and letrosol

Given a time frame of 6/12months and handed over to palliative care team.

Went for second opinion and this is what she has suggested, Goserelin injections.

Anyone else had these?? M told the side effects are joint pains mood swings, but mostly flare-ups which can cause the tumour to bleed.

Thanks to everyone for all the information and support so far. Long may it continue.

Ann Nora 🍀

[Lyndy]

Hi Ann

Can't help with these injections sorry! Just wanted to send you hugs! I find it bizarre that naming the thing is so powerful but I suppose it brings us up sharply against reality. I didn't really want to know my actual diagnosis for ages...I think I was hiding. So well done for naming it- I hope the injections do their stuff for you xx

[85live4ever]

Hi Annnora, it's a mouthful isn't it. When I asked the name of mine I was told it was just ovarian cancer the most common form. No fancy words seeing mine is the most common I thought it would be the easiest to treat. Sadly it doesn't work out that way.

One thing that pi*s me off is when they give you a sale by date. Even if you ask them how long you have they should come up with something like, how long is a piece of string? Because no one really knows how long you have. I was given 6 mouths & told to celebrate my birthday early. After my first line treatment & surgery my surgeon was shocked I was still a live his face was a picture. I have made 2 & a half years. Not completely out of the woods but I am still here. So please don't take that time frame to heart.

The most important thing to remember is keep asking questions, keep pushing for more treatments, get as much information about your cancer. Knowledge is power & of course keep us up dated. Lets hope the injections work for you. Take care Cindyxx

[Hidden in reply to 85live4ever]

Thanks Cindy,

I don't take any notice of the time frame that's rubbish, everytime I see the doctor he is looking at me as if I shouldn't be here. They asked me last Thursday how many hours in the day was I sleeping, I told them none which is true I just go about my daily routine.

My cancer is very rare they tell me as I had everything removed 17 years ago, so how this has happened I don't know.

I will keep taking whatever treatment I can get here (,, Ireland) and when all fails I will go to UK.

Take care you too.

Ann Nora 🍀

[85live4ever in reply to Hidden]

Hi Annnora, good on you! !! sale by dates should only be for food items like cheeses not humans.

It does seem strange having it all out such a long time ago then to still get oc.

Have you asked if anyone else on here has your type of oc? There are so many lovely ladies on here there just might be someone else with the same as you. Even if it's just one other lady would mean you could share ideas.

I live in the UK so I really don't know anything about the treatments on offer in Ireland. The only thing I know about Ireland is its one of the most beautifully places you can visit. Its on my bucket list but I don't have a passport so I can carry on dreaming can't I. Take care Cindyxx

[keeponkeepingon in reply to 85live4ever]

No passport needed to visit Ireland.

[85live4ever in reply to keeponkeepingon]

Hi there, I didn't know that. I thought you had to have a passport wow I am strongly thinking about visiting. Thanks for that take care Cindyxx

[Hidden in reply to 85live4ever]

Hi Cindy,

I think you still need photo I'd.

Thanks for your support.

Ann Nora 🍀

[Hidden in reply to Hidden]

Hi Ann Nora, I am also being cared for in Ireland. I have never been given exact information. I dont ask as I dont want to know. I actually have never heard of those injections. Would you consider a third opinion?

[Hidden in reply to Hidden]

Hi there, you know the doctor don't give us any information only tell us what they are doing. Maybe it's because we don't ask enough questions.

I noticed when I joined this group that everyone knew what type of cancer they had, CA125 and genetic details, I have only started asking these now and it was like how dare I.

We are too tolerant and put our trust in doctors when they don't always have the right answers or treatment. When we are not well either our minds are not clear.

I have started to take note of all the meds that are mentioned here and ask about them at my appointment.

My professor has shown no interest in trying new treatments that's why I got second opinion, but they ended up sending me back to him then for the treatment.

I will get a third opinion if these injections don't make a difference.

Thanks to all, hope your well Suzuki?

Ann Nora 🍀

[TriciaWB]

Hi Annnora

I'm sorry to hear your news, and I hope the new treatment helps a little,

I had Goserelin some years ago for endometriosis. Side effects can be a bit tough, but I don't think they are ever as bad as chemo, and as long as you get some oestrogen 'add back' therapy with the injections the worst of the side effects are relieved.

Basically it is being put into a sudden, extreme menopause. So whatever menopause symptoms you'd get are intensified. I had terrible hot flushes, and went through gallons of antiperspirant, pads to soak up sweat down there and lots of face wipes - I needed a bigger handbag when travelling out anywhere! Plus, in my case, some sleep disturbances and itchy skin.

If you go ahead, the endometriosis site has more information on the drugs and the hysterectomy site has advice on coping with hot flushes and other symptoms.

[Hidden in reply to TriciaWB]

God what have they given me now? I may have to rethink here,

Thanks for all this info.

Ann Nora 🍀

[Hidden in reply to TriciaWB]

Gosh, it's years since I went through the menopause and I can't even remember how it was, looks like I'm going to find out again.

Thanks for the information I will look these sites up.

Take care,

Ann Nora 🍀

[Sunfleury-UK in reply to TriciaWB]

If the symptoms are predominately due to sudden menopause then these won't likely be as relevant as the vast majority of women dx with ovca will either be post menopausal or have already had sudden surgical menopause (with side effects) due to hysterectomy. X

[airfemale]

Hi Annnora, I has these injections years ago for my endometriosis. I remember having mood swings and hot flushes. I was on the course for six months. I hope it works for you. Good luck. Sharon

[Di16]

I had those injections for a while last year. I had no problem with side effects. Unfortunately they didn't work for me. I hope they help you. I also have a sex cord stromal cancer, though mine has a different name, granulosa cell tumours. Di

[Hidden in reply to Di16]

Hi Di,

Your cancer is the nearest name to mine. I think the problem with mine is they can't understand how after 17 years later it can happen. I had everything checked out back then and was all clear.

I'm determined it won't get the better of me no matter what they say.

Hope your well.

Ann Nora 🍀

[rppizio]

AnnNora, my first instinct is to get another opinion. I have had these shots under a different name here in the states many years ago didn't work for the endometriosis.

My major concern for you would be if it could cause the tumor to bleed?

Maybe I am misunderstanding? I wouldn't' think they would want any of those cancer cells to be Loose in your tummy if the tumor did bleed?

just concerned about the side effects for you and what they are hoping this med will do for you?

[Hidden in reply to rppizio]

Hi,

I have not started the injection yet, thanks for your input here.

This was from the number one gyno/oncologist we have and she advised me she spoke to her colleagues in the states about my case as my cancer is so rare.

What I'm confused about now is the amount of people who had them for endometriosis?

Do you mind telling me what other name they are?

I hope you are well?

Thanks

Ann Nora 🍀

[rppizio in reply to Hidden]

What I had found out about them years ago is that while it treats endometriosis it is actually considered a member of the chemo family, so it would make sense why they are prescribing it to you.

chemocare.com/chemotherapy/...

chemocare.com/chemotherapy/...

Hope this helps a little.

[Hidden in reply to rppizio]

Hi rppizio,

You have been very informative.

Thank you,

Ann Nora 🍀

[rppizio in reply to Hidden]

You are more than welcome. glad I could help.

[Di16]

I had the injections under the name Zoladex. When I started having them, I posted on this & another site, & there were others who said they'd had it for oc. My GP told me he'd also given it to ladies with endometriosis & to men with prostate cancer, where I think he said it had some good results. I don't know anything about your cancer, but with the type I have, I've been told that recurrences sometimes happen up to 20 years after initial treatment, though mine came back after only 2. Was your surgery 17 years ago for cancer? Di

[Hidden in reply to Di16]

No Di,

I had massive cysts on my overies which was causing awful pain, I already had my womb out prior to this at 30 due to pollock and fibroids.yrs of infertility treatment that never worked for me did me no favours.

This is why everyone is amazed I got of now.

Ann Nora 🍀