De Novo Stage IV
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I'm glad the infusion worked with no much SE! Hopefully it will work the next times too!
I also opted for double mastectomy, my breast was small but very dense. I do not regret it. I'm also sort of the denovo, in the sense that my first therapy started with my mets, and not at first diagnosis.
I would just make sure, after the operation, to have a phisioterapist tell you what to do and when. Nobody told me anything at the hospital, so I ended up having a lot of adhesions on my chest. They did resolved in 2/3 months of exercise, but my chest feeled uncomfortable for months until I did the proper exercises...
Best wishes for the operation and recovery!
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Dear snow-drop, the effects of radiation treatment on tumors might come later, and I am hopeful that the cells are dying or dead, and inflammatory processes happen. You did these 25 days 2 Gy each? That is a tough protocol and SE are nasty:/
Dear sondraf… I have seen too many ladies who started "walk around the block" and ended with Marathon. Human body is amazing, and when you add your attitude and character on top, anything can happen. Lot's of hugs to you all,
Saulius
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@tougholdcrow Just wanted to add my belated welcome and sorry that you are here with us. I love your selection in username, crows are very smart birds!
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Hope everyone is doing well! I had been in “crawl in a hole” mode while waiting for scan results and thankfully just had my best ones yet. Everything is stable with the bones but they’re now saying the spots on my liver are “presumed scarring” that’s the first time they’ve said that! My team said they think it’s all dead cancer that’s left there now (never had a PET to confirm though so this is the closest I’ll get to that).
Since everything is looking good we’re going forward with both surgeries on June 27th. Just gotta mentally prepare for that now.
Thinking of you all always! ♥️
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@jobbibo, that is such good news. My day is starting with a huge smile and happy dance.
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@jobbibo Fantastic news! Glad you crawled out of that hole in all your radiance.
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What wonderful news @jobbibo!! ❤️
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dear jobbibo - congratulations! Saulius
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This is crazy…After I have my Herceptin, I have very low BP and a fever. and I have to sleep for 4 hours since I can't function. My next infusion is tomorrow.
Yesterday, I had my CBC done via my port. When I got home, I had a very low BP and fever, had to sleep for 4 hours. So now I am having a reaction to the Heparin that they use to flush my port?
Nothing is making sense anymore.
Denise
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@denny123 I don’t have a port, so I may be way off base. Could it be a problem with your port rather than the drugs? Can you have your meds through a vein tomorrow to see if you have the same reaction? Has it happened only through your port? Maybe there is an infection or something? I have no clue what I’m talking about, so just my pulling something out of the air.
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Denny,
That sounds like something you don’t need to deal with, sorry. Heparin allergies, though rare (.2-5% is the range) can occur. Port infections are often, not always, fairly obvious but I think we’ve all learned that lots of exceptional things can occur in the realm of health and medicine. Give your mo a call.
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@denny123 I’m so sorry you’re continuing to have these issues. I really hope they can try to get to the bottom of things sooner rather than later. Do they always use Heparin during your Herceptin infusion as well? Hoping they really look into it and try to figure out the culprit here. Hope you start to feel better soon. ♥️
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@denny123 I am in your pocket hoping that they find out the cause of the recent problems very quickly so your treatment can continue without worries.🌟
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Heparin is always used to flush out the port after it’s used. I don’t know if there’s an alternative.
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@exbrnxgrl Oh very interesting, my nurses always told me I was getting saline flushes when I still had my port.
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She’s kind of right! Both normal saline and a heparinized saline are used in flushing ports. Each functions a bit differently with respect to its purpose during flushing, but both are used during the process.
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Thanks all!
Since I have bilateral lymphedema (although not noticeable), I don't want to get my Herceptin in my vein.
This doesn't make sense at all. I am going to ask if they used to use the Heparin after taking my initial bloodwork. My chemo center is being remodeled, so instead of having the bloodwork right before my chemo, I have to get it 2 days earlier.
So I guess they won't use Heparin before my chemo since my bloodwork was already done. I will ask for a bag of saline, since that seems to help.
I guess we will see tomorrow, since I have to have Heparin after they remove the needle.
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Thanks for this discussion about the port. I've had chest and neck rashes twice after port flushes and was wondering if there was something different going through it on those occasions.
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Thanks all for the kind words, support and understanding. I read your sweet responses several times ❤️
Jobbiobo, congratulations on the stable and great results, and good luck with the surgeries. I am so happy for you qualifying for surgery.
Denny, thinking about you. I second the ladies about the possibility of a mild infection around the port.
Saulius, thanks for the encouragement. the radiation dose was 45 GY over 15 days. I am hopeful too that the positive effects of radiation will come along soon.
I had a CT scan and bone scan done. the good news is that the bone mets are stable or sclerotic, I'll take it. but the ct scan shows small progression in the right lobe liver mets, the left mets are stable, and the breast tumor has spread like crazy.
given the history with my MO always being unprepared for the appointment, I called him prior to the appointment to inform him about the progression! I am glad I did because he consulted with the RO. They both agreed that the changes in the portion of breast tumor are inflammation caused by radiation treatment. I hope they are right, I really do. but the radiologist's notes made me wonder, reported the tumor is now growing to the top and down through the chest wall muscle, the involvement with small margin to the chest wall (the radiologist words).
My MO's plan is to watch the TMs. in case TMs don't stop rising, we would schedule a ct scan in 8 weeks. I may have pushed him a little hard during the appointment, I requested a liquid biopsy since the breast tumor, and the mets in the right and left liver lobs are responding differently. he couldn't say no! so guardant is next, fingers crossed for great results, no mutations please…
Sondra, I shared this because I don't think my MO is communicative either. I don't mind if he sometimes talks down to me when I challenge him with tons of questions. what I've learned is if you don't ask, they won't provide.
I have learned a lot from all of you in this thread please keep sharing your experience.
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seeq,
Normal saline solution and heparinized saline are what ports are flushed with. It is possible, though rare, to have a reaction to the heparinized saline.
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@snow-drop Good for you for pushing. I know someone who is also having issues with the doc. If you don’t push, they don’t try.
As far as Gardant360, you actually may want a PIK3CA or ESR1 mutation. That opens up more options for medications. Because I got the ESR1 mutation from Letrozole, I have been on Orserdu for eight months, and I’m doing well. The progression free survival is eight months, and I’m past it. Do I have progression? I don’t know. I haven’t scanned in almost a year. My tumor markers did come down for five straight months. They are just now creeping back up. I’ve been very grateful for this med.0 -
Yay! I am okay and it WAS the heparin! My nurse said that it was used to keep my chest port from clogging. If it does get clogged, it is an easy fix.
So for the first time in 2 years, I am okay. No super-low BP or fever. I am tired like I always get after Herceptin, but not as super-tired as I have been for 2 years.
I had asked about Heparin without preservatives, and theirs doesn't have preservatives. So that wasn't the problem.
Onward….
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@snow-drop I would certainly push for some action! I had the Guardant test and have no mutations. Good luck!
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Denny - so glad you figured out the problem and at getting better today!
Snowdrop- good to see you. Wow, those are really mixed results on your scans. Getting the blood biopsy is good. Like KBL said, some mutations can open up additional treatments.
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@snow-drop Just an FYI but make sure you stay on top of them with this 'inflammation from radiation' rather than actual progression. They gave me that line for months following the November rads I had when it was clear I was deteriorating in mobility and increasing in pain from the hip and there was no way it was still 'inflammation from rads' by April. It took getting into the hospital and complaining multiple times about the hip pain and asking about potential infection (even though I didnt think I had any) to get people to pay attention, which led to the biopsy which led to the 'oh gee, guess it was progression, driven by a mutation!' To say I was angry is an understatement but it is what it is and we got there in the end but not without significant pain and challenges.
Are you eligible/in a good place for breast surgery if it is progression? Have you opened that discussion with your MO? I guess see what the blood biopsy says, that mixed result is a bit tough to work with but see what your options are. Also, are they measuring your inflammation marker - CRP I think it is - to see if its increasing? Mine was increasing because the cancer was making its own inflammation and causing fevers on its own (thanks buddy!), once I got on treatment the CRP number dropped like a rock and the fevers stopped. If they are measuring that too then it may be a distraction from what could be progression and the cancer getting going compared to 'inflammation from rads'. I dunno, yeah maybe im salty after my experience, but I dont want it to happen to someone else because an MO was too lazy/busy/excuse to investigate further. At least you have the blood biopsy coming, thats at least some action and well done you on being proactive!
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