De Novo Stage IV
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@bsandra I think the point is that bacterial infections don't come and go (except for sinus and ear aches). I just have problems after my CBC and infusion, and then am okay for 3 weeks.
Like a UTI, the typical infections need antibiotics to clear up the infections.
I have had this problem for several months and my doctors have been consulted.
Thanks for the input!
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@kbl, @tougholdcrow, @denny123 I got scan results - stable bone mets and all clear on ct - still have been referred for mammogram and ultrasound to keep an eye on one tumour. Blood work shows CA15-3 has dropped to 10. I have graduated to appointments every 2 months. - which means bloods every two months and not every month - so good. If mammo and ultrasound ok then scans every 6 months. Only downside is that I probably won't have scan results till January. The Australian health system is a mess, particularly if you live in a regional area.
Hope all is good with you all - in pockets with support and some bubbly🥂
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@malleemiss251 This is fantastic news, and inspiring. I hope I can get the same sort of results this month.
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In your pocket @tougholdcrow for good results. Let us know the outcome and in the meantime, enjoy some canoeing.
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@malleemiss251 That is great news, and your tumor marker is fantastic. It’s always a relief to be able to have things slow down a bit, and bloods every two months and scans every six months sounds great. I’ll be thinking of you for your mammogram. The waiting for results sucks.
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@malleemiss251 That sounds great and I hope that you will continue to do well! That is a long time to wait, but as long as they will keep monitoring you, that should be okay.
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I'm supposed to have a bone scan this month, but they keep postponing it. There's a labor shortage in the field of medical imaging, I just found out. Encourage young people to pursue this career path, because it looks like a good one right now!
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Oh also, there's an iv bag shortage because of the storms.
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@tougholdcrow, it is the same in Australia - staff shortage and saline solution shortage. My onc is less than impressed. I am also aware that people will be scheduling mammograms because pink month reminds them to do it, so demand is probably at a peak at the moment.
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@malleemiss251 congrats on the good scans and tumor marker!
@tougholdcrow I’m sorry they keep postponing your bone scan. I hope you’re able to have it soon, keep us posted!
I also found out about the fluid shortage when I got Zometa yesterday. They did a flush of saline through a syringe instead of a drip through the IV.0 -
The shortage isn't good news for me since I have to have the saline drip instead of a saline flush from a syringe. Darn.
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I went to consult with the IR about potential local therapy for my liver, and he diagnosed portal vein thrombosis, which had been missed by the radiologist in my last scan four weeks ago. The clot is too big to be missed and blocked blood flow to the liver lobe, that side appeared lighter in the CT image. I’m now on enoxaparin- self-administered injection for about 3-6 weeks. I can feel my upper abdomen is full, which is not a good sign. I don’t want to sound overly concerned, but this situation can be life-threatening, and there’s already been a delay in starting treatment, 8 weeks since the biopsy and 4 weeks since the CT scan. has anyone experienced something similar? any advice? Thnxxx
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Hi, It’s been about a year since I last posted and I wanted to check in. It’s been four years since my de novo diagnosis in October of 2020. My daughters were 2 and 5 at the time, and are now 6 and 9. I feel grateful that I have been able to watch them grow another year older!
We are getting ready to celebrate Halloween. My youngest will be Tinker Bell and my older daughter will be a jaguar. ☺️
I have been on Enhertu for 39 cycles (three week cycles). It will be 40 cycles tomorrow, and I plan to celebrate that! I’m hoping Enhertu continues to work for me, and that it helps many others as well. Sending love and well wishes to all of us on this forum! ❤️
Snow-drop, I’m sorry I don’t have any advice but I’m hoping someone here does. Well wishes to you.❤️
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@snow-drop So sorry that is happening for you! Prayers that the treatment will work well.
@superdenovo37 Good to hear from you again! Have Halloween fun with your daughters! It's good to know that Enhertu is working well for you. I have no idea what my next treatment will be in the event that Herceptin and Xeloda quit working for me.
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@snow-drop That is crazy! I think the techs are overwhelmed right now, but yeesh. Bad call. I wish I had advice, but I just wanted to relay my support.
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@snow-drop, that is appalling. I would be changing my radiologist. That could easily have been a life-threatening issue that they missed. In your pocket with support.
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@snow-drop I’m so sorry for what you’re going through. I totally get your worry. Please keep us posted. I am sending you a hug.
@superdenovo37 So good to hear from you, and that is so wonderful you’ve been on Enhertu and it’s working. I tried it for two months, and my quality of life went into the toilet. I hope Halloween is so fun and your girls get tons of candy.
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@superdenovo37 Wow, you have been through the ringer! I wish you many good years with your daughters. You are an inspiration.
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