Hormone therapy, is it worth it webcast
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I was stage 2 grade 3 with lymphnode involvement, I had 2 lumpectomies 22 lymphnodes removed and 30 radiation treatments I also had zero affects from tamoxifen although already having gone through menopause they kept me on it because I was osteporotic instead of changing me to letrozole after 2 yrs as is normal protocol, well I ended up with MBC and on letrozole anyway along with ribociclib. Now I can't even have the denosumab bone strengtheners as I got osteonecrosis of the jaw from it. I still can't help wondering if they had put me on letrozole earlier if I could have avoided MBC .0
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@blondy If you do decide in the future to go the op and have the tendon cut, be sure to ask the doctor to be clear on what the potential impact will be. I've heard of so many of these types of operations that cause major issues afterwards and hear that the patient was never given that information.
I will be going to my onc this week to discuss the joint, etc pain. I was a bit surprised at how the question about prednisolone was summarily dismissed during the webcast as it was a miracle for me. I know it is not a long-term solution and I know I can't take it continuously but in a few hours after taking it I went from barely able to stand up and walk, to being able to move freely (even squat and stand up in heels). As I do not want to take a Letrozole holiday, I'm hoping that I can take this when things get really bad or alternatively, there may be another medication that doesn't have the same problems. The onc had suggested this as I was already taking strong painkillers and I am unable to take ibuprofen to boost them. The stiffness and pain is gradually creeping back after 4 weeks but it is nowhere near what it was and I have to be honest - the thought of going back to that state fills me with dread.
I will also ask him what he is aware of about enobosarm. Maybe Professor Tilley might be induced to come to the conference in July @Giovanna_BCNA and present his research?0 -
I agree with @Sister re any thumb surgery, @Blondy. A girlfriend had surgery on her thumb (with a bit of bone removed & tendon relocated into the hole - a different procedure, but just as invasive) and it took 5 years before she got full movement back & and 10 years later, still doesn't have full movement but DOES get regular shooting pains.
Health professionals rarely tell you the truth about the actual rehabilitation time required for many surgery procedures. When I had my rotator cuff/frozen shoulder/Bicep tear corrected by arthroscopic surgery - I was told I'd be back on the water in 4-5 months. WRONG! Try 14 months! And I was VERY proactive with all the exercises, having had a frozen shoulder procedure done on the other shoulder 10 years previous, and knowing just how hard it is to make a 'come back'.
I agree re the prednisone question, @sister. I think that with careful use when the pain is at it's worst (like when I needed my hands for the Uke Festival in Feb) that it is a viable option along with other meds.
Great idea to get Professor Tilley to the conference - or better still - on a future webcast! I don't think I would be alone in thinking that this current one was so disappointing in NOT discussing how to minimise the effects side effects have on our lives (that is, if we even HAVE a life!)
I believe we all thought minimising side effects was going to be a main part of the discussion, but it was glossed over with negligible information! It really does need it's own webcast - Overcoming the Side Effects of AIs (so it is totally clear we are looking for solutions.)0 -
I thought a conversation about whether endocrine therapy was worth it would encompass the difficulties of taking it. As in, if considering if something is worth taking you have to balance your quality of life on it as well as the statistical results.0
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Is the trigger thumb directly attributed to Letrozole or is it something else? It should really be investigated. It maybe coincide that it has happened at the same time or it could be Letrozole. I am speaking from experience. Since I have had surgery (non-BC related) my trigger thumb is now a normal thumb
Just a thought! Please get it checked rather than put up with something you may not have to!
Take care
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@arpie I'm not sure that minimizing side effects was glossed over it's just that they have no answers and that the conversation would just go round in circles. I think what we need is a cross section of bc people and medicos on a panel with us telling them what it's really like, preferably a couple of medicos who have been thru menopause too. And from that, list what has worked for people in minimizing the side effects irregardless of how many studies have been done or what the results were.
I love how how they keep trotting out the exercise mantra. I've been at the gym regularly for the last 15 months, not counting the dog walking everyday, and still by the end of the day I'm stiff. Yes, i feel healthier, yes it did wonders for my mental health but improving my overall ease of mobility, no. Here i am nearly 2 weeks letrozole free and sitting here with a icepack wrapped round my right wrist after it spasmed on me taking the washing out of the machine. I know it's going to take a while longer but geeze it's frustrating.
I refuse to give up my embroidery and everything else i enjoy. If i have to do that then i would decide quality of life was better than taking this drug also considering I'm low risk.
To end on a lighter note...great news about Ash Barty winning the French Open!4 -
Not having any operation on my thumb anytime soon. I at least checked it out via xray and ultrasound. Now what did it do. Got better. I'm about 90% using it. Only got it since taking Anastrozle. I seem to blame everything and anything as a result of all the treatments. If it rained purple polka dots, you know who I'm going to blame. Thank you @Sister for your advice. I'm a hairdresser with 3 years left on my lease. I'll hobble on till then. Lol. There would be enough of us telling our oncologists about side effects, plus how we deal with them, that put into the melting pot would make a good discussion on hormone therapy. I would like to see more women having a voice, being listened to, and getting relevant answers for the greater good on a Webcast. I expect it's costly to Webcast. On Facebook you can go live for free. I didn't get anything much out of the Webcast except to reaffirm I'll stick with it. My major challenge after a half hour car drive as a passenger, is to alight as gracefully as is humanely possible when in fact I can hardly move my back, and then, walk off like a model on a catwalk, wracked with pain until I get going. Tomozzas another day. Keep shining like a diamond and sparkle like champage. Xx5
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Same here with the ankles @Artferret. Exercise or no exercise, the pain stays the same.0
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I have to spend 10mins every morning doing finger, ankle and foot stretches just to get out of bed everyday.0
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kinda glad I missed it. Improved diagnostic tools is a must, particularly for Invasive Lobular Cancer.0
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@Giovanna_BCNA - is there somewhere we can actually see the slides both the drs were referring to? I feel like I actually need to see the graphics to take in the data.........0
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Hello @JJ70
The webcast will be available shortly to view on demand and you will be able to view the presentation and slides.1
