Early stage breast cancer #4 (recurrence #3)
Hi everyone, reaching out to find anyone in a similar boat which I call the SS "Lucky/Unlucky". I have been dealing with early stage BC for 18 years now since an initial DCIS dx in 2001 (1mm in size - picked up on my first ever mammogram at age 37) - had all the recommended treatment (lumpectomy x 2 for clear margins and then rads). Since then I have 3 more re-occurrences - 2004 (1.5 mm, low grade, mastectomy no reconstruction), 2011 (in chest wall scar - lumpectomy and then 6 years of Armidex) and now late 2018 a 2nd chest wall recurrence. Tumour is ER positive, PR negative, HER negative, grade 2, Ki-67 25-30% (high - although my new Oncologist suggests that Ki-67 is 'the least reliable' prognostic indicator. UNLUCKY!!! Have never had any lymph node involvement or mets. LUCKY!! Have had chest wall reconstruction surgery 3 weeks ago using a flap from my thigh - went very well with clear margins etc. Differing opinions from the experts now about next steps. Advised I should consider radiation (second time around as I had it in 2001 for DCIS), although have been warned about potential heart issues and chronic skin and bone problems. Have been told chemo is also something I should consider. I asked about the Oncotype DX test and was initially told it was not suitable for someone like myself for prognosis or treatment planning, but when I said I was planning to get it done anyway, it was suggested it COULD be used to work out if I would benefit from chemo or not. Signed up for the test yesterday. Best $5K I have ever spent - either way. But I am very aware that not everyone can afford this and think it is a great shame that Australia is one of the few developed nations that does not support the cost of this via government medical programs (Medicare) or private heath insurance. Will get the results week after next. I clearly have something odd (lucky/unlucky) going on with my tumour type, and if I have to have chemo even though there is no node or lymphatic invasion so be it. I have never posted before because I don't want to frighten anyone with my sad story about recurrences - but equally, I figure now I am in some way a good story of how early detection, ongoing monitoring etc. has kept me going until now and hopefully for many more years to come. I am back on Arimidex and my new Oncologist has indicated that I may need to stay on this forever - no worries!! Have pretty much decided not to do radiation a second time as it seems quite dicey in terms of risks and rewards. Anyone have any experience they want to share. Love and best wishes to all on this forum. Cheers MvB
Having a 4 week break from Exemestane/Aromasin ...... who else has done that?
I saw my Onc yesterday, who has suggested that I have 4 weeks off Exemestane from yesterday - to see if the hand aches (in particular) 'lessen' and to see how much of the pain may be attributed to arthritis (which I know I have - but was never at this level of pain) or a direct result of the AI. I know a lot have had a break from Letrozole ..... who's had a break from Exemestane/Aromasin? Up til a couple of months ago - I was happy to go onto ANYTHING ELSE to give a go - to lessen the side effects ..... but in recent weeks, most of my other side effects (particularly the hot flushes) have abated, so the remaining problem was really the hand pain and some hip/knee (which I had to a small degree before being diagnosed with BC.) It will be interesting to see how quickly the pain lessens & by how much. Currently, it wakes me up often during the night - and I have it all day. In the morning, my left hand fingers in particular just won't 'bend' until 1hr+ after getting up - and also trigger finger in my thumb & middle fingers. I currently can't use my thumbs to pull up trousers or disengage the hand brake in the car ..... and a myriad of other day to day things - but if I had to go onto another AI or Tamoxifen - and the 'pay off' would be to go back to hot flushes & other nasties ..... I am not keen to do that. I'd rather stick with the hand pain, even tho it frustrates me with both my favourite past times (Uke Playing & kayak fishing!) Depending on the outcome of the 4 weeks off AIs, I may then stay on Exemestane, or may go to Anastrozole/Arimidex (the one with the least number of side effects - but sadly still includes insomnia!) Anastrozole/Arimidex doesn't appear to affect the joints so much. If you are on it - how is it affecting you? She will ring me in 4 weeks to see how I am going & then decide which one to go with. She was not keen for me to go onto Tamoxifen (only as a last resort) as she said there is a slight chance of cervical cancer and other issues that she was not happy with. I had a bunch of other questions to ask, but bloody forgot (even tho I had them written down!) DUH!Vertigo on Arimidex or other AIs? Who's suddenly 'got it'?
Has anyone on AIs experienced Vertigo? I'd always thought it a minor complaint ..... but yesterday it hit me big-time & I felt HORRIBLE! I've been on AIs for 2.5 years (letrozole 6 weeks, Exemestane 6 months, Anastrozole 2 years) & recently had a couple of episodes at night when getting up to go to the loo .... feeling dizzy & wobbly on my legs - but it passed. Yesterday morning, it started in earnest even before I got out of bed. Dizzy, Nauseous, disoriented & 'crabbing sideways' instead of walking straight ahead ... and just feeling 'really off'! The Dr has given me Stemetil for the nausea. There is a manoeuvre called the Epley Manoeuvre - has anyone tried it, to realign the crystals in the ear? It can make you may be quite nauseous (and even vomit) so have a tub handy ... Here’s a good one for explaining why we get it …… a bit technical but the culprits, (the ‘crystals’) are mentioned about the 4min 50sec mark. https://www.youtube.com/watch?v=kx4mQB0QzvQ My sister sent me this link: https://www.youtube.com/watch?v=lbPbM8018CE Or you can have a go at doing it 'to yourself' ..... but should have your first procedure with a professional, so you know what to expect. https://cdn2.hubspot.net/hubfs/6063852/Documents/vertigo-remedy-english.pdf Or this one to show how the moving the head moves the crystal https://youtu.be/9SLm76jQg3g?t=130
An Onerous Life
Once I was declared clear of cancer in April 2018, 1 year after diagnosis, I slowly dropped out of the BCNA forum. I found every new story to be more distressing than the last and I couldn't hold back the tears to read. I felt I had nothing further to offer other than negative things, my life was not getting any prettier. I took Arimidex for 8 months after treatment finished and ended up psychotic. I felt better the day after I stopped. That part of the treatment I'd say, was the worst. You get told you're clear of cancer but there's one final indignity - anastrozole - taking that was worse than chemo and radiation combined. So today I met with my oncologist for the last time. I will take nothing that he can prescribe, and he had a few on offer, including more scans. My current condition is not chemo related so I should continue to see my GP and psychiatrist, is what he said. I said that I thought my current condition was completely chemo related and we agreed to differ. We did agree that he had nothing further to offer me in view of my stance and then we said goodbye. My GP considers me as a palliative care patient, his prescriptions are much more user friendly! I still go to my horse every day, I can't settle until I get to him, my beautiful magic unicorn. Other than that I have no curiosity for the people in my surroundings and avoid personal contact except wherever necessary. But it's not chemo related so goodbye forum. I've got something else - the oncologist told me so.
High intensity excercise for joint pain
Has anyone had any experience with high intensity excercise to combat joint pain from arimidex? Having been on the tablets for 9 months I am quite sore. I take panadol osteo which helps but some days I just feel like I have run out of steam and don't want to fight the pains. A quiet day snd lots of walking helps. My surgeon told me about the Exmed group. They specialize in workouts for cancer patients. I have never been to a gym. Has anyone had any experience with this?
Arimidex withdrawl
Hi everyone. I've been on Armidex for about a year now and have been experiencing all sorts of problems with my hands so my medical oncologist has decided to take me off it for 6 weeks, record pain levels, how I feel and other things and then go back on for another 6 weeks, do the same thing and go back and see him. Depending on the outcome will determine if I stay on the Arimidex or try it's cousin Aromasin for 3 months and then either stay on that or last outcome try Tamoxifen. This test will also determine if it's possibly arthritic as well or if it's the tablets. My question is how many have done this or had horrific pain in their hands and fingers when they've stopped taking this medication and what did you do to overcome it? I've not taken Meloxicam for a week either and just relied solely on Panadol osteo however today my GP has suggested Voltaren 50's and Panadene forte where necessary. Thanks in advance for responding.
Having a break from Arimidex / Has anyone experienced any withdrawal side effects?
After having a consultation with my Oncologist, it was decided I have a 3 month break from taking Arimidex. I will return onto the tablet in early December. Has anyone found any side effects or withdrawal symptoms once the tablet was stopped? Or had less or more joint pain and muscle pain once stopped? According to latest studies I was informed by the Oncologist, we can have a 3 month break out of a 12 month period and it didn't seem to make any difference in terms of recurrences. Also has anyone had a lengthy one block break from their AI? If so was there any obvious side effects? I also take a tablet for my hypothyroidism which also shares many of the known side effects applicable to Arimidex.
Some people say the strangest things!
I'm dealing with some tendonitis from Arimidex. I am wearing kinesiology tape on both my wrist and my leg. Ridiculously when I go to my physio they only seem to have the tape in bright colours - currently hot pink camo on my wrist and black cow spots on my leg. At least it doesn't have flashing lights!! So I'm walking (actually limping) up the street yesterday and a man about 30 years old (so not a little kid who simply doesn't know any better) yells out about the tape and how weird it looks. I already felt a bit self conscious but everyone within 50 metres turned and stared at us. I told myself that they were looking at him because he was the one yelling out but I just wanted to disappear. I haven't felt this way since I had no hair or eyebrows or eyelashes. Pretty sure he must be on the Autism spectrum (if not he's just a total idiot) and I keep telling myself he is definitely living with more problems than me. But what I hate is that this bloody fluorescent tape has made my issues SO OBVIOUS!! Everyone I meet asks me about it and I think I need to invent some incredible absailing misadventure, snow skiing accident, or something exotic to explain it because it always comes back to my BC. Next physio visit I'm taking my own BEIGE tape and demanding that they use that. I'm so over being the girl with BC - I just want to get on with my life.
