Update following on from my previous post a few weeks back.
Had MRI on Tuesday and got the call from my oncologist yesterday. There has been progression - the emphasis was ‘slight’ but none the less progression… I’m to remain on ibrance (yay…what I wanted) and zoladex but ditch the letrozole/Femara and replace with faslodex + a bone strengthener.
I know ladies often mention that faslodex ‘is ok’ and give advice on how it’s best given etc but I can tell you that this was my 2nd nightmare scenario. My needle phobia is being tested to the limits! All bitter sweet at the mo… thankful & ever so grateful to still be on ibrance but a needle in my tummy followed by needles on either side my butt cheeks is causing me to have palpitations. I was assured by my onc I will still feel the same as I am now (very good) and can continue to work ect….but honestly - I’m not sure if this is the time to leave the job I love and just focus on me 100%. I feel ‘normal’ but I’m not…my cocktail of drugs dictates everything! First set of butt cheek needles will be given coming week Friday, my controlled breathing & mind over matter exercises have began as I need to wear my big girl pants because I need this combo to work.
Don’t get me wrong, I’m grateful but scared! Prayers for us all dealing with change, challenges & uncertainty.
N x
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Ntash01
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I am sorry to hear about your progression. This disease makes us get on that unwanted roller coaster ride . I hope you will be on your way up here shortly.
On your decision on not working I’ll vote for the 100% “all you “ . I struggled with that decision for the last couple month but every time I go back and forth ( I also love my job ) not working wins every time. If you read my posts from about 6 month ago I have a lot of good information from all our friends here on how to start the process .
Good luck with your new treatment and needle anxiety which we all have I’m sure .
Thank you so much Anita, I shall read your posts for sure. It’s just difficult to be sure as the last thing I want is to stop work and regret it, not from a financial point of view but the other benefits of work - routine, interactions, being busy ect.One thing is for sure I do need to give myself 100%, so after Friday I will begin my list of pros and cons, at the moment I’m too emotionally stressed to think straight.N x
I was also almost ready to stop treatment because of my fear of needles and when I read " 2 in the muscle of the butt cheeks" I was double scared! I spent all weekend worried, not sleeping, and come Monday D day...they had 2 nurses on each side of me, I bent over a tray table, turned my feet inward, " suggested by the nurses " and I swear, DID NOT EVEN FEEL THE SHOTS!! They gave them both at once! Secret...make sure they warm up the solution prior to the shot. I have now had 3 sets, and same thing. Do NOT even feel it....I weigh about 140lbs, so dont have giant butt cheeks to soften the blow😀 just make sure solution is warmed up, and good luck!
Misspositiveattitude 😊I LOVE your name… you and I both… but at the moment it’s hard!
Thank you for responding to me, I needed that… I shall take on board all your advice. What a great idea to have 2 nurses at the same time and to know that your experiences have been good so far is so reassuring.
Your response is so hugely appreciated!! I'm about to start Fulvestrant from Letrozole, and I have been worried sick.......I'm very needle phobic and I kept seeing other comments of how these shots are so bad that people have left their cancer treatment. Seeing that the shots aren't so bad for you, gave me a sense of control back. I hope I tolerate them as well as you do!! Thank you!!
Hope the breathing works and those big girl pants do the trick. 🙂
I’ve had needles in my tummy and buttocks and, while I don’t love them, they were better than I thought. Breathing deeply and relaxing really helped me. I don’t have real needle phobia though so I’m sure it’s harder for you and I’m sorry. Love Miss positive attitude’s tip to have the solution heated prior to infection.
Not sure where you are in relation to working: age, need for income etc. but if you like your job, maybe you can keep it until you see how you get on with the new treatment? Your oncologist did say you’d feel as well as you do now.
Everyone’s different but I’ve always found as long as I’m feeling well, it’s been helpful to work and carry on life as normally as possible. Helped me not feel like a patient which I needed to best deal with MBC. I’m now retired - worked until 71 - and because I still feel well on Ibrance and femara, live life fairly normally.
It is nice not to have stress from a job but I’ve missed the collegiality, having goals, feeling as though I’m contributing etc. and now helping two NPOs as a volunteer. Feels good to be useful. Again, though, I need that. You may not and could enjoy spending 100% of your time on yourself.
Whatever you decide, I hope the new treatment works and is very tolerable. Will be thinking of you and sending all good wishes your way. 🙏🏻 Please let us know how it goes. Kathleen
I just love what I do and am fortunate not to have do it - if that were the case, walking away would be easy! I work in education and teach young adults who have not had the best start - so fulfilling.
The way you feel is parallel to how I feel, I do not want to feel like an MBC patient until I must. I’m 53 and am fortunate to have had my children young, my youngest is 19 (only one living at home) if I left work, I’d be home alone mon-fri!!
After reading your posts I realised I’ve never spent 100% on myself, it would/may be difficult to start! perhaps reducing my hours may be an option. You worked until you were 71…wowza - I would absolutely love that… but who knows!! So wonderful to read your experiences - how long have you been on this rollercoaster for?
You are so young to be dealing with this and I’m sorry. It’s so different for me at 73 now, with a full life behind me.
How wonderful you’re working with children who’ve had a difficult start in life and how incredibly rewarding for you and them. Given your love of this work, I know you’re a great teacher.
As you’re almost an empty nester, I can imagine the thought of no longer working and concentrating on yourself 100% might seem scary. But there’s a middle ground too. 🙂
If you decide to resign from this job and don’t need a salary, I bet you could find a NPO that works with children (i.e. Boys&Girls Club but there are many others) that would love to have you on their team part-time.
Having worked since I was 21, I’m enjoying the time I now have to read, have manis/pedis, see friends etc. - none of which I could do when working. Much as I enjoy the self care though, I still needed to return to work of some sort.
My roller coaster began in 2009 with stage 2 breast cancer. Had chemo and radiation daily fir 7 weeks. Thought I was done with the disease after 5 years passed and never thought about it again. Then had breast cancer stage 0 in right breast in 2018. The needle biopsy in which 10 specimens were taken seems to have got it all according to the surgeon doing the lumpectomy. So I thought I’d dodged a bullet only to find out during an MRI in June 2019 that the initial cancer had metastasized to my spine. I’m so grateful for Letrozole and Ibrance and my only complaint is the low wbcs. They’re never dangerously low though, but I am off for 3 weeks VS the recommended 1. They just don’t come back to normal any longer in only a week.
There are many on this site who continue to work and live life as productively as possible given pain/drug side effect levels. You’ll figure out what’s best for you in time.
Take good care N, and do let us know about your results. 🙏🏻K
The first time getting the shots is very scary, but if they warm them up and you can try to relax your legs, I think you will find that it's not bad.Good luck. I'll be sending good vibes to you.
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