This discussion was created from comments split from: Metastatic Breast Cancer & avoiding weight gain while on Letrozole ?.

Hi, I am just coming back on to the website after a few years of not being on here. Since I last posted back in 2017 with Stage 2 and went through all the chemo, radio, surgery etc. I was doing well.. then in Oct 19 I was diagnosed with Stage 4 with mets in my bones. I started Palbociclib and Arimidex in Oct 2019 and now 18 months later I have been stable for the past 6 months with the CA 15-3 markers. Occasionally I will get some nausea, but I find the tiredness is the hardness part and the joint pain in my body and mainly my knees is the problem. I am Ostrogen positive so this is a huge issue with joint pain. The Palbo is working so I am happy with that. Most of the 12 lesions in my bones have shrunk but not gone. Each month I have a blood test to check the WWC and Neutrophils and CA 15-3 markers... Neutrophils are around 1.2 which is way too low but I have not moved much in the past 18 months 1.2 - 1.9 is my range now. WWC is around 3.5 or sometimes lower but only once hit 4 which is the base range for the "normal" range. So yes I am in the "don't get a bug" category. I work in and out of the hospital system so it is challenging at times and especially with the COVID situation. I have never stopped the meds except for 1 week last June when I was supposed to have another operation to clean up the boobs from July 2016 but as I am now stage 4 my Surgeon does not want to "put me in the grave" by operating. She is very upset about this as am I cos they need some work done but "it is what it is" as I say. I am living my life and getting on with not dying just yet.

@Cath62 Sad to read your post that you are now Mets! No rhyme or reason! Just wanted to send positive energy, which you always do with others and a virtual 🫂 Best wishes ❤️

Have not been on here for a while, last post was when I was first diagnosed and about to see surgeon after mastectomy. Cancer found in lymph nodes, another surgery auxiliary clearance and full scans to check everywhere. Just before chemo started confirmed spots in liver, unsure if cancer as to small but chemo started and if spots affected was confirmation of stage IV. Unfortunately and fortunately the chemo reduced the spots so since December 21 have been on the palbociclib letrozole combination. Anyone else on here for stage IV to the liver? Current stage the spots have been reduced to a very minor scar and not progressing, my neutrophils are low at 1.2 and have dropped below that once, Took a extra week off the palbo, bone ache, tiredness and slightly thinning hair main issues, have had some bouts of depression but currently in a good head space and living life as best I can. Am welcome to chatting with anyone, how everyone is doing ok

Absolutely, @Ashanty88 - as @Cath62 says, talk to your Onc about the pain, as there is no excuse for that. Or ask them or your GP to refer you to a pain specialist. Even using Medicinal Cannabis Oil (which has NUMEROUS strengths to deal with strong pain) would probably benefit you more than man made opioids. Take care I am so sorry to read of your diagnosis, Cath xx I hope that the treatment chosen for you will be minimal with minimal side effects but still able to control the mets xx. Yes, being in the 'moment' with those 5 senses is what has been suggested for me too .... tho I need more practise xx. Take care, you are in my thoughts xxxI found this the other day with just those sentiments xx

@arpie this might be a good place to remind people that, in NSW and probably elsewhere, it is illegal to drive if using cannabis containing THC. From what I’ve read, this law might need some review and fine-tuning…

Starting Letrozole & palbociclib tomorrow

Cath62
Member
2 years ago
Thanks @iserbrown.
arpie
Member
2 years ago
Absolutely correct @Fufan ... Not all CBD oil has the THC content .... and I always take it at night, to 'wear off' too

I have a letter from my Onc that is always with me in the car/van, so that if I DO have a roadside test, I can show that to the officers. It lists my other meds & my condition & side effects and that I am taking the oil to help control the arthralgia (in particular.)
iserbrown
Member
2 years ago
@Cath62
Sad to read your post that you are now Mets! No rhyme or reason! Just wanted to send positive energy, which you always do with others and a virtual 🫂
Best wishes ❤️
Fufan
Member
2 years ago
@arpie this might be a good place to remind people that, in NSW and probably elsewhere, it is illegal to drive if using cannabis containing THC. From what I’ve read, this law might need some review and fine-tuning…
itsjustablip
Member
2 years ago
Hi @Ashanty88 - I had awful bone pain and joint stiffness with Zoladex and Anastrozole and my oncologist suggested Curcumin which I take morning and night as a tablet. It has made a big difference for me. Perhaps check with your oncologist.
Hopefully it provides some relief for you xx
Ashanty88
Member
2 years ago
The cancer l have is estrogen positive. so lm scared that cannabis May increase estrogen. It has such good reviews for other breast cancer not estrogen positive.
arpie
Member
2 years ago
@Ashanty88 - as well as doing your own research, you can do a search on the forum for Medicinal Cannabis Oil (see link below) as we've been discussing it for the last 5 years, on & off. ....

Clicking on the link below will show you some Webinars you can watch from 2022 from the search .... and other info threads as well ....
https://onlinenetwork.bcna.org.au/search?query=medicinal%20cannabis%20oil&scope=site&source=community

It should only be a matter of time before the other states 'come in line' with the current ACT law, where Canberrans can grow 2 plants each (or 4 per household) and can make their own Medicinal Cannabis Oil!

I can't wait for that to happen as it also takes the criminal element out of it as well! It is a HERB, for God's sake!! Plenty of other herbs are used for medicinal benefit!!
Ashanty88
Member
2 years ago
Thank you so much endone is so bad with the constipation . I eat a bag of prunes and coloxyl but still so much pain . I did hear about medicinal cannabis and it’s benefits as well . I will do my research,
btw l feel heard ladies 😊thank you 🙏🏿
arpie
Member
2 years ago
Absolutely, @Ashanty88 - as @Cath62 says, talk to your Onc about the pain, as there is no excuse for that. Or ask them or your GP to refer you to a pain specialist. Even using Medicinal Cannabis Oil (which has NUMEROUS strengths to deal with strong pain) would probably benefit you more than man made opioids. Take care

I am so sorry to read of your diagnosis, Cath xx I hope that the treatment chosen for you will be minimal with minimal side effects but still able to control the mets xx. Yes, being in the 'moment' with those 5 senses is what has been suggested for me too .... tho I need more practise xx. Take care, you are in my thoughts xxx

I found this the other day with just those sentiments xx
Ashanty88
Member
2 years ago
Thank you Cath
l will talk to my team . I do mindfulness at times , it seems to help . I will give meditation a go too