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Cheri's avatar
Cheri
Member
11 months ago

Zoladex & Letrazole or Tamoxifen or Remove ovaries + Letrazole

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 zoladex

Bone 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 + Letrazole

I 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 
letrozole
tamoxifen
weight
zoladex

18 Replies

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  • Tri's avatar
    Tri
    Member
    11 months ago
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    Hi @cheri
    I am HER2+ and had Herceptin and targeted chemotherapy. I also had surgery and radiation therapy and was started on Letrozole 3 months. 
    I have not gained any weight so far.  
    I am pretty committed to daily exercising but more for my wellbeing than as a weight management strategy. 
    I do feel mildly warm flushes, but not super hot flushes. 
    I have bone pain in my ankles and feet that seems to come on at night but I can’t be sure if this is from taking the Letrozole or not, because I developed neuropathy during the HER2 targeting treatment (ie before I started Letrozole) and had bone pain in my feet already. 
    Last Friday I finished the last cycle of the 14 month Herceptin based treatment (hooray!), so I will review Letrozole in June with my oncologist once the treatments clear my system and if needed I can try another AI. 
    In the meantime I’m experimenting with taking the Letrozole in the evening to see if it makes a difference and currently taking Panadol osteo but might try Lyrica if the foot pain continues as it’s interfering with my getting to sleep which has a knock on effect (fatigue) the next day.
    I hope all goes smoothly for you, it’s an epic treatment timeframe but I’m so glad the first treatments were manageable and you’re starting from a good base ❤️🌻

  • arpie's avatar
    arpie
    Member
    11 months ago
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    @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
  • Cheri's avatar
    Cheri
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    11 months ago
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    @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?
  • Afraser's avatar
    Afraser
    Member
    11 months ago
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    Surgery, chemo, 12 months of Herceptin and 10 years of Letrozole. No radiation or Zolodex. I had no side effects from Herceptin, as far as I know, no fatigue, aches, pains or anything like that from Letrozole but did have vaginal atrophy and bone thinning. I was also 27 years older than you when I started which has some relevance! Always good to check your bone density when you start an AI so you know what you’re dealing with - mine was excellent when I started so some wiggle room. I have maintained a reasonably consistent weight - I do walk daily, do yoga and try and eat a healthy mixed diet. Best wishes for the future. 
  • Cheri's avatar
    Cheri
    Member
    11 months ago
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    @arpie thanks for the response, sorry for the confusion I'm going to edit my post. I have a great knowledge oncologist she is lovely. I meant chatting to my oncologist, the route I want to take is not a great idea...
  • arpie's avatar
    arpie
    Member
    11 months ago
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    Hi @Cheri - I didn't have chemo or Zoladex, so don't have any experiences to offer as such ... but I really feel for you with the side effects that you are going thru. xx

    Where abouts are you having your treatment? 

    Gentle exercise and eating well should definitely help with controlling your weight & hopefully getting it down.   

    Re aches & pains, I have been taking Medicinal Cannabis Oil - and it definitely takes the edge off them and can also help with sleeping.  Ask your onc about that. ;) 

    Do you have a breast care Nurse assigned to you that you can chat with?   Failing that, maybe ring our Helpline on Monday - 1800 500 258 if you would like to chat with someone  xx

    Take care & all the best xx

  • Aska's avatar
    Aska
    Member
    11 months ago
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    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 decision
    Xx