Dupuytren Contracture
Moderator moved @jaynie_000 comment to dedicated discussion post: This is my first post on this platform. I see my oncologist tomorrow, but I have developed a painful and growing nodule on my ring finger / knuckle on the underside of my palm. It’s getting larger and more painful. I am on femara since 2020 when I got diagnosed with stage 4 metastatic breast cancer at age 53. My first / initial diagnosis with early breast cancer was in 2009 and I was 42. I took Arimidex for 9 months but couldn’t cope with the pain in my feet. I changed to Aromasin and it ultimately dissolved my Achilles tendon. I required it to be grafted after it broke. I was on Aromasin for 6 years and gave up on AI’s due to their effect on my tendons and continued pain in my joints and feet. Fast forwards to now and I have had plantar fasciitis (pain in arch of foot) and now I’ve discovered the nodule on my palm. I can’t hold the steering wheel of my car well or open a jar with a tight lid. Any action that requires grip hurts. My oncologist has previously said that Femara can cause tendinitis so I’m ready for her to say give femara a rest for a while. But she has also told me that aromatase inhibitors essentially are the only drug that holds the cancer at bay. Because my cancer is hormone receptive. Ultimately my cancer will recognise an AI and work a way to get around it. When that happens it’s a whole new approach to treatment. So I’m not keen to go off Femara for any period of time. I will put up with side effects. I live in Sydney close to the CBD. I have most of my treatment and appointments through the Mater hospital at north Sydney. I have huge trust for my onc. a professor and specialist when it come to MBC. I am keen to know how you have found the radiation treatment. Did it work? I know an excellent hand surgeon but if I can avoid surgery then I will pursue that option. And my biggest question is …Femara the cause of your Dupuytrens
Trodelvy - any info to share?
Hi, I am reaching out to see if anyone else has commenced Trodelvy chemotherapy and if yes, what are your side effects experiences. I am only in 1st cycle, 2 weeks on/1 week off. Main reaction has been some insomnia and bad fatigue. Wondering about hair loss and at what stage, if anyone has experienced this? Does fatigue get worse? Any other lurking side effects to be aware of?
On herceptin and perjeta , stage 4 , itchy skin and now itchy scalp -anyone treated itch sucessfully
I’ve been on H&P for over 12 months -experiencing itchy skin for last 4 months or so. Mostly red spots on chest and shoulders/back Told oncologist and am using cortisone cream on chest and shoulders; also getting DEX with each three weekly H&P infusions . NOW have developed itchy scalp - last night I ended up getting a freezer block and putting it on my head in bed ,which whilst seeming to,help is tricky in that the freezer block does melt so end up with wet pillow. Freezer block square so doesn’t mould onto scalp properly I’ve tried taking antihistamine tabs as well , itch on back/chest better although hasn’t gone im seeing dr again this week so will ask her what I can do , but thought I’d ask if anyone here had same issues and what did you do to help ?
Kisquali
FYI - I did post in private group last night but no response so thought I'd try here as well. :-) Hi there all, Strange question for you all for a Sunday night - I'm on my 13th round of Kisqali, still on 3 tablets which is highest dose. I'm taking in combination with Letrozole and the bone strengthening injection every 2-3 months. I'm doing really well on this treatment combo and apart from ridiculously disgusting dry feet that are revolting and foot pain, nausea and tiredness, I can't complain too much!! Recent PET scan has shown that my bone mets are still present but not active according to oncologist which is amazing news apparently. My question is, I think my hair is thinning out and I have a "sore head". Only way to describe it is it feels as though my hair has been up in a "tight ponytail" and scalp is sensitive. Of course, I will check with oncology nurse tomorrow but thought others might have similar experience that they could share. Can't ask anyone at home to check for bald patches as single mum here and don't want to freak my kids out totally - I think that was the hardest part of my original cancer journey for them when I shaved my head as it was all falling out from chemo. Other question for musing this late on a sunday night is, are there others in this group on Kisqali or Ribociclib combo that have been told they are doing really well - I can't seem to shake the feeling that the PET scan got it wrong!! Thanks in advanceAsk the Expert: Managing cognitive changes related to breast cancer treatments with Jo Lewis
Good afternoon everyone :) We are hosting our next Ask the Expert event on the 24th of May at 7.00pm AEST. Many people report mental fogginess, feeling vague, memory loss or concentration problems during and after treatments including chemotherapy and/or hormone-blocking therapy. These side effects are often referred to as chemo brain or chemo fog, but the formal term is cognitive impairment. Research is being undertaken in Australia and around the world into the best ways to manage cognitive impairment, however there are strategies that can help. It’s important to speak to your treating team for advice and support if you are having cognitive problems. At this Ask the Expert event, we will hear from occupational therapist Jo Lewis and BCNA member Kate Keogh Murray. Jo has over 20 years’ clinical experience as an occupational therapist and her clinical work specialises in workplace rehabilitation and work health and safety. She is currently completing her PhD, investigating how cognitive changes experienced by women with breast cancer impact on return to work. Kate was diagnosed with early breast cancer in 2017 and is currently experiencing cognitive changes due to her breast cancer treatment and prescription medication. This session will address what you need to know about cognitive impairment following breast cancer treatment, including key causes and symptoms you may experience, effective strategies and practical tips to help you manage symptoms, and where you can find help. During this Zoom event you will be able to ask Jo and Kate questions. Please share your questions prior to the event via the question box on the registration page, email events@bcna.org.au or during the evening via the discussion box on your screen. Please click here to register. Thank you, IsabellaAsk the Expert: Living well with lymphoedema with Maree O’Connor
Good morning everyone! Sharing that we are hosting our next Ask the Expert Digital Event next Thursday evening on the 7th of April, which will focus on living well with lymphoedema. The event will run from 7.00pm - 8.00pm AEST via Zoom. To register, please click here. Lymphoedema is swelling that occurs when lymph fluid builds up in the tissue under the skin. It can develop after surgery or radiotherapy to the lymph nodes under the arm and surrounding area. Surgery and radiation can interrupt or damage some of the nodes and vessels that lymph moves through, resulting in a backup of fluid in the tissues (lymphoedema). While there is no cure, early detection and ongoing management and treatment are important to prevent lymphoedema from worsening and to enable you to live well with it. At this Ask the Expert event, we will hear from lymphoedema physiotherapist Maree O’Connor and BCNA Consumer Monique Bareham. Maree is lymphoedema physiotherapist with over 30 years experience in the management of lymphoedema for people affected by breast cancer and Monique was recently announced as South Australia’s 2022 Local Hero for her advocacy for compression garments for lymphoedema after her own personal experience of lymphoedema following breast cancer treatment. This session will address what you need to know to be able to live well with lymphoedema, including symptoms you may experience, how you can reduce the risk of developing lymphoedema, current and emerging treatments, where you can find help and what you can do to help manage lymphoedema. During this 60-minute Zoom event you will be able to ask Maree and Monique questions. Please share your questions prior to the event via the question box on the registration page, email events@bcna.org.au or during the evening via the discussion box on your screen. Event Details: Date: Thursday 7 April 2022 Time: 7.00pm - 8.00pm AEST Where: Online – from your computer, tablet, or laptop Your Local Time: WA: 5.00pm NT, SA: 6.30pm QLD, ACT, NSW, TAS, VIC: 7.00pm
Herceptin 11 years on
hi everyone long time since I have been on here as things were going as well as can be expected but now I have this cough which I have now had for approx 10 months that just won't go. My GP says my lungs (which is where my mets are) sound fine but the cough is heavy and loud with a high pitch - it even scares my dog lol. It is so tiring to cough like this it sounds like its loose but its not. I already have fatigue problems and this makes it worse. I am coming up to infusion number 200 so wondering if it the cough is due to being on Herceptin for so long. Has anyone else had any issues like this? I hope everyone has survived covid-19 lockdown and is doing well Sue
WTF 2020
Good evening everyone...I really thought 2020 was going to be my year! Anyone else? First the fires...floods...then I thought I was having a heart attack which turned out to be Takotsubo cardiomyopathy..say what! Then COVID-19...millions lose their job...and thousands lose their lives 😢...isolation and now they found a lesion on my skull and I had a MRI this week...to say I’m not worried is a big fat lie...and yes Dr Google has not been my friend...I’m just waiting to be told when I’m seeing the neurologist. If it is malignant what should I expect, I know every cancer is different but I’m thinking the worse...can anyone help with some positive stories please xx
Anyone else on Herceptin & Perjeta indefinately???
Hi Ladies Hope everyone is doing well, it has been ages since I last visited. I was wondering if there are many out there who are undergoing herceptin and perjeta treatment every 3 weeks with no end date like myself. I have now been doing it since about April 2016 and while my side effects are fairly minimal; I have started thinking about what I might expect if things continue the same. I imagine the build up in my system will increase the side effects, so far my heart function is fine....but wonder if it will stay that way. Most people I have talked with only stay on this treatment for the 12months, but as mine travelled into my spine the oncologist says this treatment will remain as it appears I am "responding to treatment". Thanks, Kari
