hormone therapy

Hi @Jessiemydog 🙂. 

Hi @Jessiemydog .... Welcome to the club that no-one really wants to join!  Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you.  Nothing is off limits.  We have ‘private groups’ for some more personal discussions .... so feel free to join any of them, if they suit you. (Specially the Invasive Lobular Group.) We put up any helpful info we find.

We all know the absolute turmoil that comes with the bc diagnosis .... specially after a ‘clear mammogram’ and no family history. This was my story.  My MG was clear just months before my wonderful GP found it, by accident!  I was diagnosed with ILC, had lumpectomy, Rads and now on AI Tabs.

Have you had your surgery/got your pathology yet?  The Oncologist will go over your options to reduce the chance of recurrence.

everyone reacts differently to the AI tablets, so with a bit of luck, you’ll be one of the ones with minimal side effects!  I hope so!

You can put Letrozole in the ‘search bar’ and there will be volumes on it and other AIs ..... but try not to assume it will happen to you!

Whereabouts are you?  Cit/town? You can add it to your profile.  Then others may be able to point you to specific assistance in your area 

take care, all the best with your treatment options xx

Thx Arpie
I'm new to this, love the quick response.
Cheers

Hi @Jessiemydog. Some of us have fairly vigorous reactions to AI meds.

After 4 years on Letrazole, I can honestly say that the side effect I find most remarkable is that I'm still alive and, as far as I'm aware, disease free. 2016, when I had my recurrence, I honestly didn't think I'd see out the decade. But here I am.

I'm fatter and stiffer and achier and crabbier, but I'm still here. Mxx

@Jessiemydog I had lobular - had surgery, chemo, rads and now Letrozole (which is supposed to be the best one for ILC).  I have to say I have not fared particularly well on it but on the other hand, I'm still here.  My suggestion is to start it with the thought that you will not have any significant side effects because that may well be the case.

I have been on Femara (Letrazole) since early November this year. Ie about 7weeks.
So far, I don't believe i am suffering side effects.
But I do not know what is happening to my bones yet.
I have sore knees and hip, but this is not new, I have Osteoarthritis.
It's hard to know what is age related, I'm 62.
Like all of my treatments, I have gone with the treatment advice given.
I believe that this has been my best chance to be cancer free.
I have gone into each treatment with an open mind, re possible side effects.

8 years ago had DCIS , lumpectomy and radiotherapy.
Sept this year
was diagnosed with ILC same side.
,ER and PR positive.HER neg.
Grade 2
Had a masectomy and implant at the  same time.
I'm 57 and still perimenopausal. 
Not happy with first onco as she wanted to put me on letrozole.
Seen another onco and she suggested to put my ovaries to sleep by either 24 months of injections or getting my ovaries removed and been  on letrozole.
Taking my age into consideration not sure what to do.
My breast specialist has suggested to take tamoxifen and then move onto letrozole as he  says I'm at low risk
Has anyone been in my situation?

I agree with everything that has been mentioned so far. I was diagnosed with ILC exactly 1 year ago. I had a clear mammogram and US in February 2019 and then noticed something and had it checked and so it began. 4 x AC, 12 taxol, BMX (my choice) expanders and then implants put in 4 weeks ago. My nodes were clear and I had clear margins. I have been on Femara for 5 months. I have slowly developed stiff fingers and feet - mostly in the morning, but once I get moving it vastly improves. I am 54. I had a hysterectomy before my diagnosis, but I kept my ovaries. I just went straight onto Femara, but my doctor said that even though AIs are the ideal treatment for ILC, if I couldn’t tolerate them, I could take tamoxifen. 

I agree with @Abbydog and I approach each treatment with an open and mostly positive mindset and keep everything crossed that I won’t experience the side effects. My oncologist is excellent and wants me to let him know of any side effects I may have as he said there other options to explore - change brand; have a ‘holiday’ from the AI etc. He explained that different people react differently to different brands so sometimes it is worth trying another brand. He also said that sometimes having a short break and then restarting kind of reprograms the person and their side effects may lessen - he said they don’t know why this happens, but it can happen and is worth trying. The other thing is, and this is where it becomes very individual, it all depends on your individual pathology and the overall benefit that is gained from completing each of the different treatment options - chemo, rads, AI/Tamoxifen. 

I am determined to continue with the AI as it is incredibly effective in the treatment of ILC. I am also taking various supplements to help with the aches - I am not really sure if they are doing anything, so after the crazy festive season I am going to do research on myself 😂 and just take away one thing at a time to see if I notice any difference. As I said, my oncologist is always supportive - even if he does raise his eyebrows at times - and he suggested I just change one thing at a time as, in his words, ‘you could be spending a lot of money on something that isn’t doing anything’. 

@arpie and @Zoffiel do you take any supplements for side effects? You always have great suggestions and at the moment I reckon I will start rattling if add anything more to my potions but if it works, I am up for it! I have read that drinking lots of water is helpful and acupuncture can also help. 

Just from our responses, you can see how varied our experiences are. Yes, I am stiff and at achy at times, but I just keep my eye on the bigger picture. I guess, the only way you will know is when you try whichever medication you decide on and if you find it too tricky, you can try something else or decide to stop, as ultimately it is your decision. Your doctor may be suggesting tamoxifen as there are potentially less side effects. Don’t forget, you may have minimal or zero side effects. Good luck with your decision

Hi @Jessiemydog,
Diagnosed late 2019 aged 54. Still had periods. Lumpectomy, radiotherapy then a few months on Tamoxifen, which caused endometrial hyperplasia. In my case, the Zoladex and Letrozole combo I'm on now is to put me into menopause ASAP instead of letting my periods continue and fuel my hormone-positive BC. I think it makes sense and the gynecologist agreed. I really hate taking these drugs, but I feel they are the best I can do to try to prevent a recurrence. Like @Mazbeth  and everyone else, I'm also trying various ways to deal with side effects, especially joint pain. Exercise, stretching, fish oil, vitamin D, magnesium with tumeric supplement, Panadol Osteo. I suffered from depression before all of this. I continue taking low dose escitalopram, but I need to talk to my GP as my mood swings are now very erratic and the lows are much lower than before. I'm in it for the long haul so I'm aiming to iron out the bumps as I go along. That's the best any of us can do.

All the best. L x 

Hi @Mazbeth ... I’ve been taking the magic oil for nearly 2 years now and I believe it is really helping me cope.  As you know, the longer we are on the AIs, the better chance of not getting recurrences (or so we hope!)  I started taking it shortly after starting Arimidex (after 6 weeks on Letrozole and 6 months on Exemestane.)

I am still a bit achy and creaky, but that ‘extreme pain edge’ has been reduced bigtime.  My Onc and surgeon are aware that I am on it and my Onc has written me a letter saying I am on it - which I keep in my wallet, in case I have a positive roadside test (which is highly unlikely as the oil I take is not ‘activated’ so should not have any ‘high’ content.)

take cate xx