Contemplating stopping treatment!

Dear Cosmo girl,

Having had both AIs and chemo treatments myself, I get you!

First and foremost, you should be your own advocate. Cancer is such a big disease in itself that your MO/RO's main purpose is to keep you alive as long as possible. There is no cure but a good number of treatments to keep us alive. Yet, the quality of life factor is not to be overseen..

ın many treatments the SEs are somewhat managable with SE treating meds. Yes! You ask for them!

You should have an oncology pyshiatrist well aware of each AI/chemo SEs, so can prescribe easing mood/anxiety/sleep meds.

You should have an oncology experienced pain doc likewise.

A pulmonologist, cardiologist, oncology dietician as well.. I found out about these during my past 5 year experience and now feel in control& mostly living days with good qol.

MOs do suggest things if you ask but they have their main concern to keep you alive, no matter what.

Right after dx, I was awake a full week as SE of taxotere, had great muscle /tissue/joint pain.. oh and as I was also on Xeloda, I had a heart attack. Well, my condition was so bad that MO skipped asking whether I had heart condition(which I had).. lucky I survived. Was immediately put on heart pills so that I could continue on Xeloda 5 more years with minimal SEs.. the cardiologist realising I wasn't sleeping at all, put me on mood/anxiety & sleep pills, later referring me to my psychiatrist. These docs and and meds are for times like this..

as ı had severe PE, the pulmonologist took control of the situation and in two weeks I could breathe normally.

MO was informed of all this, in fact they shared info.

Your diet is important, you need professional advice. Many SEs of treatment can be controlled with basic things.. I suggest you have a look at my cancer diet thread.

This is a very bumpy road, only the ones with MBC can get you. Don't expect much from loved ones. We are here for you

I suggest you first consult with a psychiatrist and start on meds.. will feel the difference immediately, trust me. I have my meds adjusted with each new treatment, this is normal, not a luxury.

Please feel free to ask, pm anytime. I have had so much support from my BCO sisters and the BCO team, I will be happy to share whatever I can.

Yes, each country have minor differences in treatment protocols, but what I have summarised above is standard worldwide!

Hugs,

Ebru

SORRY! I DIDN'T REALIZE UNTIL I POSTED THAT THIS THREAD IS JUST FOR STAGE IV ---- mods can remove

Cosmogirl, the AI you're on (letrozole) gave me the worst hot flashes (though not constant, like yours) and made all my muscles and joints hurt. I switched back to anastrozole a few days ago, and already feel a bit better. Maybe you could ask you doc to let you try that before you give up on all treatments? Our bodies are all different, and react to drugs differently. Worth a try? Whatever you decide to do, I hope you start to feel better soon (((hugs))).

Cosmogirl -  hang in there!    I can't believe your team is telling you there is nothing more they can do.  Perhaps it's time for a new team!   There are other options out there.  Ebru gave you some terrific advice!  I hope you take her up on her offer and reach out to her.  Don't allow yourself to spiral down.  The fact that you posted here is sign that you don't want to go down that path.  Where do you live?  In the US or UK?

Cosmogirl,

It sounds like you are very depressed. Given our situations, that's not an inappropriate response.

The hot flashes have been wearing you down, and your medical team isn't really listening to you. Can you call them - right now - and ask for the name of a therapist familiar with a cancer patient's needs? Their service will relay the message to them, and you should have a reference Monday morning.

There are some antidepressants that minimize hot flashes (I think it's Wellbutrin), and can help your neuro-chemistry stabilize while you are in treatment. You mention that you've tried some of these medications - was Wellbutrin one of them? Wellbutrin sometimes works better in combination with another of the SSRIs. It's one of those things you just have to keep trying till you get the right combination.

It sounds like your team is focused on your cancer's stable phase, but they aren't paying attention to your heart and mind. They need to stop that.

If you feel you can't hang on till Monday, go to your local ER and tell them what is going on. Is there anyone at home for you to talk to right now? I'm a bit worried about you.

Please keep in touch. Cancer is hard, and I hope you get the intervention you deserve.

Cosmogirl, I don't mean to intrude on stage 4 thread but have you been given paxil? I was taking paxil with my anastrozole and also exemestane it helped with the hot flashes and related symptoms. I had terrible trouble with joint pain but no hot flash symptoms.

Cosmogirl I've never had hormonal therapy but chemo put me in and out of menopause over a short 4 month period. I'm on Effexor 75mg and Gabapentin 900mg, both supposedly help with hot flashes but they didn't for me. I kept complaining about flashes every half hour from about 5pm till the early hours, I was worn out from stripping off, then getting cold and redressing, only to have to strip off again 15 minutes later. The young registrar told me to practice meditation! The Onc mentioned Clonidine but then dismissed it saying it lowers Blood pressure. I was desperate so eventually I went to my GP and asked for it, on top of the other drugs. I now take Clonidine (Catapress) 100mcg at 4pm - my GP wanted me to divide it over 2 doses but after trial and error I worked out that this worked best for me. Although I still get flashes they are not as frequent and I rarely sweat much any more, it is such a relief! CosmogirlI don't know if this would be suitable for you but since you haven't tried it perhaps you could discuss it with one of your doctors? I hope you find relief soon!

Cosmogirl, you have a lot of suggestions on how to manage hot flashes.

I have a completely different idea.

I'm really unhappy that your care team is not listening to you. I can see their point of view in a way. They want to keep you alive for as long as possible and have seen many worse side-effects than bad hot flashes. It sounds like they are trying to help but nothing is working.

You have the right to halt any treatment for any reason. If you can't live your life at all and you're totally miserable it's time to ask the docs for some other kind of treatment. Xeloda or one of the other chemotherapies. Those can cause other issues/side-effects which you may not be happy with, but you can certainly try. Because the hormonals still work you can always go back to them.

Alternatively, what about stopping letrozole for a week? You can tell them you are doing it so your care team can feel informed, and you can see whether it's the letrozole or the zoladex.

Just wanted to point out that in Cosmogirl's top level post she indicates that she has been on Tamoxifen but is now on Letrozole.  She mentions being on letrozole again in a later post.