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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I still can’t believe how a radiologist in a cancer clinic missed a one-inch blood clot and didn’t notice the change in the texture of the liver lobe. it makes me wonder if they just copied and pasted from previous reports, such a shame. I had an MRI of my abdomen today, and hopefully, the IR (who technically saved my life) can figure out an option for local therapy. hoping for good things to happen.
Denny, KBL, tougholdcrow, malleemiss hugs to you all. unfortunately I have no control over which radiologist reads my scans, it’s someone new every time. I’ve heard that some large hospitals are starting to use AI to read images instead of humans, but I’m still not fully comfortable with AI taking over so much of our lives, not yet.
KBL, I’m starting to believe that Enhertu works better for HER2+++, I wish SuperDenovo would come back and share more about her experience.
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@snow-drop it's unbelievable that the radiologist left that out of his report. How are you supposed to have faith in your team?! I wonder if your MO will start taking a look at the imaging and not just the report. Good luck with planning the way forward.
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@snow-drop my onc has always said that radiologists misinterpret the scans. I had 3 liver biopsies in 2003 and all 3 missed my liver met. And in spite of yearly mammos, my BC wasn't seen until I was Stage 4.
Lately, stuff has been seen in my scans that are false alarms.
Prayers that you will recover okay and your future scans will be more closely watched.
I'm getting my Herceptin today and dreading it. Apparently I have bacteria in my chest port??? I did get my CBC taken from my hand vein 2 days ago, and had no problems. And the last time I had my Herceptin infusion, the nurse let saline drip through my port afterwards, instead of using a saline flush. That did help.
When I get a saline tube flush, and I arrive back home, I get a very low BP (57/44). I also have severe leg pains and a 103 fever. All from a saline flush????
My 22 year old chest port still works well, though.
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@snow-drop I definitely would like to know if Enhertu has worked long-term for Her2 low.
@denny123 How did you do?
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@kbl Thanks for asking! I did okay!!!! I did have some Herceptin chills at the end, but that was probably because I had the saline flush through the line instead of a syringe.
But when I arrived home, I didn't have the severe leg pains, very low BP drop or fever. I did sleep for 12 hours.
I am amazed that it took me 2 years to figure out all of my problems. My chemo nurses kept suggesting that I just quit chemo altogether, but I sure didn't go along with that!
To summarize, apparently a heparin or saline syringe flush into my 22 1/2 year old chest port disturbs bacteria which spreads throughout my body which causes all of the problems. I could get a special port dye test which is rather complicated, but as long as I have a port flush of saline through my infusion line, I seem to be okay so far.
So I am going to continue with the CBC draw from my hand and the saline line flush and hopefully I will continue to do okay.
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@denny123 I think if nurses can’t be compassionate, they need to look elsewhere. I’m glad you’re getting some continuity.
It’s been 6.5 weeks since my last treatment, and I feel sort of human. I’m able to function better. I was looking up hospice, and it has a few things that show you’re ready to begin, and I am definitely not there yet. I have a doc appointment tomorrow and then one on November 20th with my at-home oncologist, and we will have a long discussion. My weight is staying steady, and I’m still able to eat. This is my quality I was looking for. Thank you.
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@snow-drop I’m so sorry they missed something so important! That’s so scary to think they can miss / not report things like this. I hope there will be a good plan moving forward!
@denny123 Yay so glad to hear that this flush through the infusion line seems to be working well! I can’t imagine how frustrating it’s been trying to figure this out.@kbl I’m really happy to hear that you’re getting the quality of life you’ve been looking for. Being able to function better and maintaining your weight seems like a huge win! I hope your appointment tomorrow goes well, thinking of you.
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@kbl it sounds like you might just need some palliative care. I had that after my clinical trial of Poziotinib since it was so super-nasty. I had to stop all treatment for a while to get my bloodwork back to an acceptable level. That was about 7 years ago. Since I was too sick to leave my house, a nurse came daily to do my bloodwork and vitals.
@jobbibo thanks! I sure hope that this will continue to work okay and I do feel better now. Those 3 days of nasties from my CBC and chemo were taking a lot out of me.
Well, my daughter and 12 year old grandson both have Covid. They were apparently both contagious last Sunday when I was there for dinner. Their symptoms started on Tuesday, and they took the test this past Saturday. So far I am okay and I did not wear a mask there. Since I have to get the booster in my butt (I am bilateral lymphedema), there's only one place that will give me the shot. And that place last year didn't even get the booster in since Medicare wasn't paying for it.
I sure hope that I can get the booster very soon, but have to wait for another week since I was exposed. This is their second time to get Covid, and so far I haven't gotten it. But I don't go around crowds at all.
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@denny123 Yes, I had a palliative care nurse come visit me a few weeks ago. That’s what I will use until I have the need for hospice.
I’ve had Covid once, and it was from my husband’s friend. He was visiting for a weekend and let my husband know the day after he got home that he had Covid. My husband tested positive the next day and I tested positive a day or two later. I’m thinking hopefully you would already have symptoms. It’s catchy pretty quickly. I will be hoping you don’t get it.
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