Kiwi ladies who need encouragment, but all welcome.
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HI All,
Just jumping in Frog to say that I hope tomorrow goes well. You're getting through it, week by week by week.
I have been in hospital since Thursday 31/5 with an embolism. I am allowed out today on "Ward Leave" which has been great. I am just about to head back in. They are not sure what has caused the clot so I was put on heparin immediately then changed to clexane injections on Saturday. I have 2 ultrasounds set for tomorrow as they suspect that the embolism may have developed in my femoral artery or the arteries in the back of my new knee (so could be a complication from my knee replacement). The other thought is that it's micro vascular disease (actually they seem to know very little). However, some good news is that they did a neck to toe CT, and it was clear.
I really didn't want to jump back into the rabbit hole, but unfortunately here I am. Hopefully it's not because of the tamoxifen, as I have tolerated it very well compared to exemestane and letrozole. I will let you know.
Good to hear from you Alyson. I hope everyone else is trucking along well.
Love
N
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Thank you Nik, for the kind words. Till now I find Taxol more doable than AC. But early days. I have only had 2 Taxols till now. Third one coming up on monday. I have heard Taxol effects are cumulative.
I hope you are doing much better than when you last posted. Congrats on the CT. Have a good weekend
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oh my goodness so much news since I last logged in.
Niki I hope that clot issue has been sorted as it’s nearly a month ago now. I am guessing they did take you off the tamoxifen because of it?
Hi Frog - sorry you have had to ‘find’ our wee group. We don’t wish bc on anyone! I’m nearer to Wellington than Auckland sorry.
Shazza - that is such a bummer about your progression. You have done so so so amazingly on the taxol every week. Can’t believe you coped so long really. I hope you are feeling ok and things are stable on your new regime.
Hi Helen. Nice to read your post. I did have to laugh about the fan on your desk! I’m sure we can all relate. I think I am the only one at work that wears just my short sleeve uniform shirt all winter long! Lol. Good that your son seems to be enjoying his new work. I’m sure he’ll be enjoying the money also.
Hi Michelle, Hi Alyson 👋 👋 hi everyone else. Donna do you still check in here?
Things with me are pretty good so can’t complain. Had my 50th Birthday on 21st June (same day the PM had her wee girl). We went to Bali for a holiday the week before to mark the occasion then a party at home with family and close friends to celebrate. My girls helped out a lot with organising everything. Hubby’s present to me was another trip to Buenos Aires for just us in August so I am feeling very spoilt on the holiday travel front. Otherwise working working working.
I started doing this Keto diet thing, through a lady called Deborah Murtagh) and lost 10kg. Went off it though travelling and birthday-ing so need to start it up again.
Hard to believe it’s July again. Where is the year going?
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Hi ya,
Good to hear from you Kruise. Welcome to the 50's club!!!
I am ok, still battling the blood thinners, the statins and the vein diliation drugs. I am still on tamoxifen with the goal for doing another 7 years, and will probably be on anticoagulants of some description for that time, as there is no definitive proof that it is/was the tamoxifen that caused it. It could well have been my knee replacement in September. I am off to see the Vascular consultant on Wednesday for a follow up. All my scans and ultrasounds showed nothing that could have contributed, so that is good and bad news for me. A definite reason why is always good for an Analyst.
How is the taxol going Frog? The end must be in sight now. I remember it getting pretty shitty toward the end, but within a few weeks that seemed to have abated and I was on the up and up. Will you be needing radiation?
Hi and kisses to everyone else.
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Hi Nik,
I go in for Taxol 7 on monday if the blood counts are all good. I have surgery after chemo and then radiation. We dont have a dateset for surgery yet.
6 more weeks to go. I am in a crazy place right now. One moment I am all excited that there are only 6 more to go and within seconds the 6 weeks seem so long.
Its a beautiful day today. Hope the weather holds through the weekend.
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it's been too long ladies...how is everybody?
I had a momentous occasion yesterday....I went for my oncology checkup at Wellington Hospital (all was good) and they told me that as it was now 5 years (on 11.11) that I finished my treatment I was now officially cured and officially discharged. It is a funny feeling that's for sure. I guess that knowing feeling that anything can change at any time still lingers with me .... but I am now officially on my own, closing the chapter...
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Congratulations Kruise! It imagine it will feel strange after all that time to not be actively monitored anymore apart from the standard mammos.
I had my 6-monthly checkup in August and after getting the MRI & Mammo results, my BS said "Well normally you'd have another checkup in 6 months, but everything's looking peachy so we could put you onto a yearly one?" And I was all "K, thx, bye!" lol He's referred me to a PS to look at possible fat grafting and I see him in December.
Was lovely to catch up with Helen in the supermarket the other day, she was looking really good
Hope everyone else is doing well. Looks like we are in for another hot summer.
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Hope you all had a lovely Christmas Day with your families, and are enjoying a wee break from work.
Best wishes for 2019 - let's hope it's kind to all of us.
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Wow over 18 months with no posts here! I hope that means that everyone is doing well and getting on with their lives.
After 3 years of clear mammos, ultrasounds and MRI, I've been recalled for 'something'' they see in my left (bc) breast. I'm hoping like mad it's just some scarring or something.
I did end up doing two lots of fat grafting and had excellent results, including the release of scarring which helped immensely.
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Just updating (for posterity because it looks like I'm the only one looking at this thread lol)
Despite my surgeon's fears that I had IDC, it turns out to be DCIS - a different one to last time though, not a recurrence. So I've had more surgery with clear margins, but of course no rads because I've already had them. He's going to talk to me about Tamoxifen as a preventative.
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I am looking Amusing! Hi!
Same thing happened to my friend after being 8 years free from IDC, turned out that hers was DCIS. She opted for a mastectomy and reconstruction, no need for chemo or radiation this time. Her surgeon was sure it was IDC as well.
When did you have your surgery?
Nikki
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Hi Nikki! How are you doing?
I had surgery on 19 October.
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I am doing pretty well thanks. Nothing really to report, I see the Oncologist, they give me more medicine (exemestane again which sucks). I am still working away and busier than ever, despite covid.
Not long since your surgery, I hope you're healing well. I know it's a weird thing, but congratulations on the DCIS, the best possible outcome, even though it all sucks!
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Thank you, and I know exactly what you mean!
Do you get side-effects from the Exemestane?
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Yes I have been on it before, and it was horrible, but I was very pre-menopausal that time. Hopefully now I am few years on it won't be so brutal. Bone aches and pain in my feet, legs and arms.
Time will tell, I have just started back after quite a long time on tamoxifen (2.5 years).
What are you on, still tamoxifen?
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Hopefully you won't get the same side effects this time.
I'm probably about to start Tamoxifen, I wasn't on anything prior to that. My BS says he wants me on it as a preventative seeing I've had two lots of DCIS. I know some people have horrible side effects and some have only mild or none so I hope I am in the latter category.
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Hello. Its been a while thats for sure. Sorry to hear you have had another scary time of it Amusing S. That's not what we need at all. Lucky it was picked up. Hopefully the Tamoxifen does the trick. Im just plodding on like an aged 56 year old. My poor old bones are taking a beating with the Letrozole. Im overdue a visit with my very busy specialist and I guess we will be having some big conversations. Some shocking liver blood test results. Dexa bone density scan shows levels have plummeted in 3 years and now an odd hearing test has the GP concerned. So now as you can imagine im not feeling that great, hence the return to the old haunting grounds.
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Hi Helen! I'm sorry to hear that you are having so many issues. I will keep my fingers crossed that they are for benign reasons. Do you see Paul Samson?
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