Hi all :) Firstly, this forum is amazing and I am so grateful for it and all of you who take the time to share and respond. When you feel like no one else can relate it really just gives one comfort.Im 41, was HER2 positive, chemo & surgery done. Mid way through radiation. I have been on Zoladex from during chemo (8 months)Chemo side effects were minimal and it was effective, I perhaps did not notice side effects and was running on adrenaline or in survival mode. Now that, some time has passed I have noticed some side effects that are bothering me and want to get off Zoladex but chatting to my oncologist about it, her recommendation is to stay on zoladexBone pain, fatigue, hot flushes, irritability, disturbed sleep, belly fat, weight gain :( are the side effects I have been experiencing. Not to mention the injection can be painful.I have to have herceptin for the next year every 3 weeks and zoladex every month for 5 plus year and the letrazole for minimum of 7-10 years.These are my protential options Zoladex & Letrazole Tamoxifen Remove ovaries + LetrazoleI guess what I am looking for is to hear about your experiences or route you took and whether the symptoms subside or anything to manage them. Does eating better and exercise really help with the weight gain or is it inevitable?Look forward to hearing from you.Feeling overwhelmed today

Hi @Cheri I'm HER neg, Est and Pro POS, so not the same as you sorry. I am on Tamoxifen. I struggle with fatigue, although it is gradually improving, and actually lost weight when I started. The hot flushes were waking me at least 6 times a night. Mu oncologist recommend I try acupuncture. Within 5 weekly sessions the hot flushes are no longer. I now just go monthly which works. Any longer between sessions they come back. Good luck with your decisionXx

@arpie the cannabis oil sounds like a great natural alternative, can I only go through my oncologist for that or do you get it from a official supplier here?

@Cheri - You can ask your Onc (or any of your medical team) if they are able to prescribe it for you - but there are also some Trials that you can take part in.@Cindi was able to get onto some - she is in the North Sydney area .... where abouts are you (roughly)?A mix of THC and CBD has worked for me (10:10) - but you must be aware that if THC is 'detectable' in a roadside saliva test, if pulled over, that it may be a problem. However, I have a letter from my Onc saying that I am on CBD oil for the treatment of Cancer Side effects and hope that IF I was pulled over, it would help - and whilst I've never been tested yet .... I make sure I have it on me when in the car, just in case I am pulled over for a random roadside test. I take it at night before going to bed & reckon that it works its magic overnight & is less likely to be detected the following day. You need to work the dose up slowly (they will advise you on that - it is called Titration.). And is well worth a try ;) Good luck xx

Hi @Cheri ,I'm so sorry for everything your going through, it's hard. I was wondering which area in Sydney you are? as I'm having acupuncture at the Well Being Center at the Mater Hosp. in North Sydney for the side affects, it's really helped. I have it once a week.I've had breast cancer in both breasts & had double mastectomy, so grateful I didn't need Chemo or radiation. Then I was put on Extemazine hormone blocker, now on Anastrozole.The hot flushes are a bit less, although the acupuncture may be the reason.I take Magnesium, made up in a compounding chemist at Crows Nest before bed which helps restless legs.Next week I'm starting yoga at the Wellness centre.But I DO think exercise helps, I have been very weary and much more tired lately, but still try to go to my gym to do cardio and bone strengthening weights as much as I can. I haven't put on weight.But I haven't really had the energy to get on here much lately, & still have brain fog :( The sleeping problem and aches have bed taken care of with the CBD oil in the day and the oil with the THC in it an hour before bed ensures sleep :)I can't recommend the oil highly enough, it's definitely helped me.If you want to private message me I can give you details on the Doc I found who prescribes it for me.Good luck & sending hugsCindi xx

Hi @Cheri, when I was taking mine, I got them both at the discounted rate. I have a pensioner concession card though, so not sure if that made a difference.

Zoladex & Letrazole or Tamoxifen or Remove ovaries + Letrazole

Cheri
Member
11 months ago
@Tri thanks for your feedback, much appreciated, Do you know why you did not have to have zoladex? (if you don't mind sharing)
Fantastic news on completing the Herceptin treatment.
Cheri
Member
11 months ago
@Cindi Thank for the feedback , much appreciated. I am in the Ponds , its north west of Sydney. Yes, I would like the details of the Dr for the THC and CBD, thanks. I cant private message you for some reason.
Tri
Member
11 months ago
Hi @Cheri thanks for the good wishes- ☺️
I have been through menopause already and
I think that’s why I wasn’t prescribed Zoladex.
Cheri
Member
11 months ago
Would any of you know if letrazole or zoladex can be covered by Medicare or private health as they will be taken long term?
FLClover
Member
11 months ago
Hi @Cheri, when I was taking mine, I got them both at the discounted rate. I have a pensioner concession card though, so not sure if that made a difference.
Cheri
Member
11 months ago
@FLClover thank you
dobsonj
Member
11 months ago
Hi @cheri,

I was diagnosed with metastatic breast cancer (de novo) aged 51 and didn't have to have chemo and radiation. When I first started treatment in March 2023 I had zoladex, letrozole and kisquali not at the same time but gradually. After 4mths I had my ovaries out and am now on letrozole and Kisquali.

The hot flushes and fatigue are still with me but not as potent as they were in the beginning, you can talk to your oncologist about medication to reduce them and it does work. Fatigue is my biggest issue at the moment and I am still working on it.

I thoroughly recommend the removal of ovaries, mostly because I really don't like needles and that was a big one. One thing one of my favourite nurse mentioned was that the more they pinch to inject the less you feel it. Also, it is less pills, needles and medications you need to manage in the long term.

I hope you feel better and stay well!
Regards
Janet
Cheri
Member
11 months ago
@dobsonj thanks Janet, that is good to hear about your experience, thank you for sharing. Yeah I had the zoladex done y.day and the anticipation of that needle and the quick pain , I don't think one will ever get used to it.

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