Zoladex and Exemestane

[Crochet girl]

Vickyb,  I still feel overwhelmed by it all still now,  we go through so much has and then we have all this to contend with after the chemo/radio has finished. The aches were eased when I switched from Tamoxifen to Zoladex,  but it may have been  the long term side effects of chemo settling. Don't push yourself, listen to your body.  

[vickyb]

Thank you for your comments, i am feeling a bit overwhelmed by all the side effects but the worse is the bone aching. This is all so new, no crochetgirl am not taking herceptin. Got 2 more weeks of radiotherapy and then will start to try and exercise again but too tired at the moment. x

[Crochet girl]

Crikey, Chez666, that sounds like  more adverse side effects from taking them in the evening! I have noticed less beardiness from Zoladex than Tamoxifen. I hope it all settles down for you. I do feel sort of stunned at the side effects I have been left with after this treatment. 

[Crochet girl]

Hi vickib,  pleased to (virtually!)  meet you.  I haven't noticed any difference in the side effects by adding Exemestane in,  except maybe my flushes are less severe,  but that may be the swap from Tamoxifen to Zoladex. I think putting weight on is completely understandable given the changes you have had to make. Are you on Herceptin too? 

[Chez666]

Hi Vicky, I am not sure to be honest but when I read other threads about the alternative drugs, a number of women has changes to taking them in the evening and were reporting improved circumstances so I just started....since I last posted my face has come up in a terrible rash but I suffered from roseacea so not too surprised but going to start back on my antibiotics, and I have started growing a beard....well perhaps not a full one but my salon whipped them out for me yesterday and suggested threading going forward ...it seems we have to poison ourselves to keep the blighter at bay. Good luck and hope you can find the motivation for exercise again, I am just starting to build up my regime again and I am sure it must be good for us 🚲🚲 x x x

[vickyb]

Hope it is Ok to join this conversation. I am also using both exemestane and zoladex, and have 2 more weeks left of 4 1/2 weeks of radiotherapy. I seem to be having very similiar side effects. Does it make any difference to what time you take the exemestane to the side effects you get?

[vickyb]

Hope it's Ok to join in this conversation. I am also on both zoladex and exemestane, half way through 4 1/2 weeks of radiotherapy. Seem to be having very similar experiences to you all. Also put on about a stone and a half, this is also due to comfort eating and not doing exercise that I was doing before and giving up smoking! Do you think it makes any difference when you take the exemestane to what side effects you get?

[Crochet girl]

Oh,  you are definitely not a wuss.  These hormone treatments do funny things to us!  I am hot,  then boiling hot,  then freezing cold.... 

[Chez666]

Hi I was hot yesterday afternoon too, but have been cold ever since. Currently in sofa with 2 fleece blankets over me. Am getting such a wuss, !!! X x

[Crochet girl]

Chez666, that is so wierd,  I had my second last Thursday and it was way more painful than the first was too! And it was niggling me all evening too.  I have been so hot since though,  I am digging my summer clothes out. X 

[Chez666]

Gilly, thanks for the tip on tonic water, OH got me a bottle yesterday and it definitely has a stronger taste and most enjoyable, I naturally assumed it came with comp chocolates but apparently not!!
Crotchetgirl, had my 2nd zoladex yesterday and that hurt more than the 1st one.....odd? Had merina coil removed as well!!!

[Crochet girl]

Thanks  for the tonic tips,  Gilly,  I will try that one. And it's reassuring to know the chem brain will improve too,  it's been particularly bad today. I'm  glad you are on the mend. x x 

[Butterfly318]

I notice you girls mid treatment are talking about your brain ----  its had a lot to deal with so please be kind to it....

Following Chemo it was like baby brain and my Husband and Son who know a lot about communicating with Dementia patients wouldn't find the words for me or help me out..... Rats

I am two years this week from last Chemo  and had reconstruction since then.  Trust me girls that fuddled brain will get better.  I used to have a note book and wrote everything down, particularly during appointments and anything important, it was really helpful.  Still got it tucked away but i don't use it anymore.

Good Luck with the rest of your treatment.  Gilly x

[Chez666]

Thanks Gilly, will give that a go x

[Butterfly318]

On the Tonic Water.  Fever Tree Tonic (usually got to go to Waitrose or Sainsbury's) is a bit of a luxury but contains natural quinine rather than manufactured.  With lemon and ice you can kid yourself it's got Gin in there.  Its a really refreshing drink and it does help with the cramps / pains.

Take Care Gilly x

[Crochet girl]

Ha,  I too would like a functioning brain!  Ah,  I see, I might give quinine a go.  I do feel more achy today. It's a good point about making choices yourself,  we really just do as we are told.  The SOFT trial looked at premenapausal woman and how ovarian suppression alongside hormone treatment plus or minus Exemestane might affect survival if they were still premenapausal after chemo or didn't have it.  If you Google it, it will come up. I think,  as  set of patients, we women with breast cancer are probably the best informed about our disease and treatment.  

[Chez666]

For,alpro,I meant soya ......wish I could find something for my brain to get back into gear!!!

[Chez666]

i read that quinnine in tonic water helps with aches and pains, not sure they put it in tonic anymore but it makes me think I have a g&t, !!!! plenty of water and then some more to help flush the toxins! Oh and I have started eating alpro yoghurt for calcium as opposed to my usual variety, it's probably a placebo effect but I feel like I have made some choices rather than the Drs etc. What's the SOFT trial ?? X

[Crochet girl]

Crikey, you had a stroke too?! That's awful :-(  I can understand why you didn't have chemo. What's the thinking behind the tonic water etc? I had a mastectomy,  then FEC-T then Herceptin which I had to stop as my heart has been affected. I had Tamoxifen for 9 months, but alot of side effects, so my Dr knew about the SOFT trial and switched me to Zoladex and Exemestane. Like you,  I'm hoping to have my ovaries whipped out! 

[Chez666]

Ps looking at lots of other posts about the drugs and people's experiences , I take the tablet after my evening meal, drink 2 glasses of tonic water in the evenings and have upped the amount of water I drink and decreased the number of mugs of tea I drink. No idea if any of this is helping but makes me feel like I am exercising some form of control on the situation #callmedeluded!!!

[Chez666]

Hi, of course I am 53 but pre menopausal however I had a stroke 3 years ago which ruled tamoxifen out. I was borderline for chemo but because of the stroke and only a 2.5% increase in my survivability the onc ruled it out. Am happy with this but am having 15 sessions of radiotherapy hopefully starting on 23rd March, have Ben delayed due a haemotoma and a burst wound!!!! How are things for you? X

[Crochet girl]

Hi Chez666, thank you for taking the time to reply. I don't want to tempt fate either but I am pretty happy so far...... That's interesting that they said a year,  I am hoping for the same thing. My first injection was painless but yesterday's hurt!  Let's see how we go over the next months.  Can I ask how old you are and if you had the chemo?  

[Chez666]

Hi, I am on thjs combination but a newby. Had my first injection a month ago, it did not hurt!! Started tablets a week ago and I don't want to tempt fate as it is very early days but so far okay. I asked for them to remove my ovaries as I did not want to be on a whole batch of drugs, but they won't consider it until things have settled post op and radiotherapy and oncologist indicated it might be up to a year before they did. I hope all goes well for you and will read the other posts with interest, thanks for starting it 👍

[Crochet girl]

Hi ladies, 

I have just been switched from Tamoxifen to  monthly Zoladex and Exemestane with a view to removing my ovaries in a few months.... I am looking for other people's experiences of this combination,  side effects,  length of time, before they settle, etc. Can any ladies let me know how they find  this treatment?  I have had a mastectomy, FEC-T and Herceptin which I was unable to finish due to my ejection fraction falling. Many thanks in advance. :-)