Letrozole, insomnia, CBD oil

MJ04

Hi everyone,
This is my first post.
I am struggling with weight gain, insomnia, bloated feeling, low mood and joint pain.
my breast surgeon has changed me from tamoxifen then letrozole now I have a script for anatrozole.
i have tried cbd oil for insomnia as well as temazapan, melatonin, phenergan.
i would love some advice, feedback from others struggling,
thankyou

primek

Anastrazole was the best thing I did to changeover as my joint pain is almost non existent now. It really made a huge difference.
With bloating I started taking note when this happened and discovered it was related to dairy and eventually I was diagnosed lactose intolerant. Sometimes things aren't related to the medication. 

iserbrown

Insomnia isn't something I have experienced,  thank goodness!  There's a fact sheet by BCNA that may help 
https://www.bcna.org.au/resource/fact-sheet-sleepless-nights-breast-cancer-and-sleep/

Take care 

kmakm

Hi @MJ04. I am on Letrozole and have had/am having a devil of a time on it. I am determined to continue, and after just over two years, this is where I'm at with coping.

I work with a very supportive GP. She is not an expert in BC survivorship but she is open to hearing me, researching, and thinking laterally. I feel supported by her. You say your BS has prescribed you the hormone supressors. My understanding is that this is usually done by an oncologist. Is there a reason for this? I ask as oncologists can be better placed to make suggestions on what can help.

For the aches and pains (particularly bad at the moment in Victoria's cold damp weather), I am prepared and able to take paracetamol all the time. It doesn't get rid of the pain but it often takes the edge off. I have a reserve of stronger painkillers for when paracetamol doesn't cut the mustard. In non-Stage 4 lockdown times I see an osteopath once a fortnight. This helps manage the pain, giving me some relief for a few days. My GP writes a care plan for me that helps with the cost of a few appointmennts. I tried acupuncture, which some find great, but it did nothing for me.

I am on an anti-depressant. I started on it during chemo and have since increased the dose twice. I have never had depression before but have resigned myself to not even trying to come off it until I've finished taking Letrozole. I still get very low, so I can't even imagine what I'd be like if I didn't take it! I strive to do the other things recommended for depression: regular exercise, regular sleep, healthy food. I don't always succeed but I keep trying. It helps to spend time doing what makes you happy. This is often a struggle for me, particularly at the moment (Covid19 🙄), and with a large family to care for I often feel guilty for taking time for myself, but I'm getting better at it. I also see a psychologist. I don't always feel better after seeing her but it always acts as a release valve.

Weight gain?! If I had the answer to that one I'd be rich! I only have to look sideways at food and I gain... The best I've got is cut out the sugar, don't drink alcohol and fill up on vegetables.

I have struggled with sleep since I was diagnosed. Letrozole has been a disaster for it. It's a long story (involving a menopause clinic, tears, waiting lists, a resignation, and a registrar...) but I've ended up on a drug called Syquet. It's actually an anti-psychotic but has the happy side effect of acting like a sleeping pill. But without the addictive properties. I don't think I can be on it for the duration, but when my anxiety skyrocketed during the first lockdown I was awake until 2 or 3am, and it was making functioning normally (not that I know what that is anymore!) impossible. Syquet has been a godsend. I still get low but most nights I get some sleep and I always fall asleep quickly.

It's taken me determination, persistence and a ton of research to keep ploughing on. I hope some of this (a very short version of the last two years) is useful to you. All I can say is hang in there. K xox

Gavroche

Hi @MJ04 and @kmakm

I am sorry to read that you are suffering badly on Letrozole.

I am also taking it - when I started I had the generic brand and did have shoulder and wrist pains. I then swapped to the brand version Femara and have had no pain whatsoever following this switch.

I read that Generic
drugs are required to have 80% active ingredients to match the BRAND
drug. The remaining 20% are “fillers” which differentiate the generic
from each manufacturer and the Brand. While these fillers are very
small amounts, many women swear they trigger various side effects for
them. Many pharmacists and doctors will insist the differences are too
tiny to have this effect, but again, many women would disagree. It has worked for me and I am  very grateful.

arpie

So sorry that you are struggling @MJ04 .... it is horrible that the ‘cure’ almost seems worse than the original ‘condition’!   Welcome to the blog tho - I hope we are able to help you thru this shitty road that we are all on.  Where about are you? Which state/city? We may have members nearby who can point you to local services that may also be able to assist you.  You can add your town/state to your profile.

Weight gain, insomnia and aches and pains are the most talked about side effects from AIs ... yet many professionals still pretend they only affect a ‘few’, when the posts on BCNA obviously prove they are widespread across all ages and stages of recovery. 

I’ve had weight gain, aches and pains and insomnia and am on my 3rd lot of AIs - currently on Anastrozole/Arimidex.  I am taking CBD for the aches and pains, but take THC before bed, for insomnia.  My Onc is supportive of me and I have a letter from her in my wallet, saying I am on it for cancer side effects, in case I ever test positive in a roadside test.   

Please check out this thread ... and feel free to message me with any questions 
https://onlinenetwork.bcna.org.au/discussion/19569/medicinal-cannabis-oil-amp-reduction-of-pain-improvement-in-well-being/p1

take care and all the best xx

MJ04

Hi Everyone,
thank you so much for your messages. It’s really nice to be part of a supportive group.
I live  in Adelaide and I’m not part of a support group.
I am a public patient at the RAH.  I only saw my oncologist during chemo now it’s one of the breast Doctors. I do feel that I would be better trying to see my oncologist to discuss the awful time I’ve been having with letrozole.
Thankyou for your support everyone.

MJ04

arpie said:

So sorry that you are struggling @MJ04 .... it is horrible that the ‘cure’ almost seems worse than the original ‘condition’!   Welcome to the blog tho - I hope we are able to help you thru this shitty road that we are all on.  Where about are you? Which state/city? We may have members nearby who can point you to local services that may also be able to assist you.  You can add your town/state to your profile.

Weight gain, insomnia and aches and pains are the most talked about side effects from AIs ... yet many professionals still pretend they only affect a ‘few’, when the posts on BCNA obviously prove they are widespread across all ages and stages of recovery. 

I’ve had weight gain, aches and pains and insomnia and am on my 3rd lot of AIs - currently on Anastrozole/Arimidex.  I am taking CBD for the aches and pains, but take THC before bed, for insomnia.  My Onc is supportive of me and I have a letter from her in my wallet, saying I am on it for cancer side effects, in case I ever test positive in a roadside test.   

Please check out this thread ... and feel free to message me with any questions 
https://onlinenetwork.bcna.org.au/discussion/19569/medicinal-cannabis-oil-amp-reduction-of-pain-improvement-in-well-being/p1

take care and all the best MJ04 said:

Hi Everyone,
thank you so much for your messages. It’s really nice to be part of a supportive group.
I live  in Adelaide and I’m not part of a support group.
I am a public patient at the RAH.  I only saw my oncologist during chemo now it’s one of the breast Doctors. I do feel that I would be better trying to see my oncologist to discuss the awful time I’ve been having with letrozole.
Thankyou for your support everyone.

arpie

How long ago was your surgery @MJ04?  You should really be reviewed by your oncologist at least yearly & you should be able to book an appointment earlier if you have specific concerns, which it sounds like you do.  I see my surgeon, Onc and Rad Onc at@MJ04 t once a year - usually for 5 years.

I actually didn't get on that well with my original Onc, so changed and am really pleased I did, as my current Onc is very supportive and sympathetic to my side effects.  I'm now onto my 3rd lot of AIs due to nasty side effects (starting off with Letrozole, then Exemestane and now Arimidex which is a MUCH better for me.) I have found that the CBD oil has 'taken the edge' off the general aches & pains, so not aware of it 24/7 like before (tho not 100%) and am no longer taking anti inflammatories or pain killers, which is good.

Make sure you don't mix the temazapan and the phenergan, as both have 'sleep' properties ...

Take care xx

Gavroche

Hi @MJ04 and @kmakm

I am sorry to read that you are suffering badly on Letrozole.

I am also taking it - when I started I had the generic brand and did have shoulder and wrist pains. I then swapped to the brand version Femara and have had no pain whatsoever following this switch.

I read that Generic
drugs are required to have 80% active ingredients to match the BRAND
drug. The remaining 20% are “fillers” which differentiate the generic
from each manufacturer and the Brand. While these fillers are very
small amounts, many women swear they trigger various side effects for
them. Many pharmacists and doctors will insist the differences are too
tiny to have this effect, but again, many women would disagree. It has worked for me and I am  very grateful.
I really hope you find relief. xx

Afraser

I don’t think there is any doubt that some people are affected more severely by Letrozole than others - like chemo reactions, it’s hard to work out what are the triggers and ‘cures’. I agree that fillers can cause some reactions but many people have tried several brands only to find that, after a temporary alleviation, the old problems recur. I’m on femara with no aches or pain but switched to arimidex for three months to see if it helped vaginal dryness (it didn’t) but I did not have any new or different side effects. It’s frustrating and depressing for those who are struggling on for a benefit they believe in but can’t quantify or guarantee. Strength to you all.  

Sister

@MJ04 There is a facebook group "Adelaide Breast Cancer Friendship Group" that is quite supportive and they do have face-to-face catchups on occasion.