De Novo Stage IV
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@tougholdcrow Thank you. đź’•
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Dear tougholdcrow, I am sorry you are in this "situation". These cancers are therefore so scary - a small low grade one can have several cells that are completely different and haven't been in biopsy samples. The spreading to LNs tell that it is aggressive indeed:/ But in many cases aggressive cancers react well to treatments, so hopefully yours will too. The combo that you are getting is a very very effective one, and the people who are here, are full of wisdom and ready to help. Hugs, Saulius
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Thanks so much, @bsandra . I'm changing oncologists, but my original one has insisted that the lung nodule is not cancer. The new oncologist says we're watching it. Of course I get very worried about it, since my prognosis is worse if it is cancer. But as you say, I'm on good drugs. My lymph node biopsy shows an increase from HER2- 0 in the original tumor to HER2 1+ and a decrease in PR, so yes, as you say, the thing might be a mutant like the Swamp Creature. When I walk through the woods, I see trees that are partially eaten by termites or have bulbous parts from some other insects, and I think yes that is nature. This tree is not ready to fall yet!
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Been a while since I checked in, catching up on everything!
@denny123 So glad to hear it’s not an allergic reaction to Herceptin! I hope the slower infusion helps, can’t go wrong with some hot chocolate! I also haven’t heard of post-prandial hypotension before, I’m sorry you’ve been dealing with that. I’m glad that you’ve been able to keep it in line with smaller meals but that sounds hard to have to manage.Â
@snow-drop I hope your next scan shows nothing serious for the new spot shown, I’ll be thinking of you. I’m so sorry to hear about the problems from Xgeva, I hope you’re not in too much pain from that. It’s so frustrating the side effects some of these drugs cause. I’d be frustrated that they’re not wanting breast surgery too! Are you able to get a second opinion where you’re at? I wish they would at least consider some surgery option for you. If you get the radiation I hope it works wonders for you!
@illimae Looks like a great day you had, I hope you enjoyed those margaritas! Hope you’re doing well!Â
@kbl So happy to hear you got to spend time with your grandson for a few of days. Also glad to hear Orserdu is still doing its job yay!!Â
@harrow Always thinking of you, hope things are going well!Â
@tougholdcrow I’m so sorry you’re here but so glad you found us. I can’t imagine how disheartening it was to be treated for locally advanced cancer to then confirming stage 4. I think any oncologist who says they won’t give a prognosis because of how long we’re living now with all the advancements is exactly who you want on your side throughout this! The first time I spoke with mine she also didn’t give me one. She said “I have a patient like you that is 15 years into this diagnosis and I have no reason to believe that won’t be you too” and I cling on to that a lot when I start having darker thoughts. Finding out you’re HER2 1+ opens the door for other drugs so that’s good! Enhertu is the one I know for sure people with low HER2 can now take. Sounds like you’re on a very good and effective treatment plan now, sending all my love!Â0 -
When I had my follow up transvaginal and pelvic ultrasound done they found a third suspicious spot and scheduled me for an MRI, which I had yesterday. I just got the call this morning that none of it is suspicious for cancer, a huge sigh of relief over here today. I can now fully enjoy my vacation next week! I’ll be chilling in the mountains for a while, it’s much needed.
Because of the spots popping up in my ovaries / uterus that they think are hormone driven and continued bleeding I talked with my gyno and I’m going to get a radical hysterectomy. Having a consult in a couple weeks for that, and May 20th I’m having a consult for a lumpectomy. I haven’t had any surgeries since diagnosis and now having consults for 2 is somewhat overwhelming but I’m also glad to be able to have surgery since I’m stable.2 -
@jobbibo I'll breathe a sigh of relief for you, and I hope all of these complicated surgery decisions turn out really well.
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@jobbibo Thank you. It is great fun when I have my grandson.
I’m so glad the you got good news. I had a partial hysterectomy in 2012. If I had known I was going to have cancer, I would have had my ovaries taken as well. Please keep us updated as you go through the surgeries. And have a wonderful mountain trip.
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@jobbibo I’m so glad to hear the results are not cancer. What a relief!! The good news needs to keep rolling. Please let us know how your consults for surgery go. I hope they work out exactly as you wish. I was super hesitant about my mastectomy, but I am happy I did it. Interestingly enough, having only one breast doesn’t bother me as much as I imagined it would. Enjoy your vacation in the mountains! You deserve it.
Thinking of you all.
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Dear all, thank you so much for the kind support and encouraging words, mean a lot to me.
finally it was decided that radiation treatment is the only option for me, all 3 physicians agreed on it, perhaps surgery option wasn't in their textbook. I felt like they were playing good cop bad cop. the young BS let me down when she said that the metastasis will kill you not the breast tumor, I didn't need someone remind me of that. her knowledge came from the results of a single trial comparing surgery Vs. targeted therapy, similar outcome. honestly fighting with them only added a lot of stress. the tumor was growing and I needed something to be done quickly. not to mention it took 3 weeks for my forgetful MO to place referrals to consult with the BS and RO.
I am now in the middle of treatment hoping for the best results. radiation makes me tired, please forgive me if I cannot respond individually to your sweet messages, thinking of you all. xxxx
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Thinking of all you wonderful people! Hugs from all of us Mods!
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@snow-drop I hope the procedure has a very good outcome at the end of this struggle with the docs.
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@snow-drop I’m so sorry for all the additional stress this has been causing you. 3 weeks to place the referral, that’s so frustrating. Sending you wishes for plenty of rest and that the treatment works well!
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@snow-drop prayers for a successful treatment. We are here for you!
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@snow-drop I’m thinking of you as you get your radiation. I’m sorry it makes you so tired.
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@snow-drop I’m sorry you weren’t able to find a doctor who was willing to take a chance on surgery for you. Sending positive thoughts that the radiation will do its job! I hope your jaw is doing better after coming off Xgeva.
Thinking of you and everyone else!
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Please wish me luck today! I am at 22+ years of MBC de novo and have been on Herceptin for 21 years. I now have developed a resistance to Herceptin and no one can figure out what to do.
During my infusion, I have been getting extreme shaking and tremors. It took a year to figure out that it was actually chills. The Herceptin powder is refrigerated, but not the saline with which it is mixed. So now I ask for 2 warm blankets, hot cocoa, and I use the seat heaters. That does help a bit. And I also have the infusion for 45 minutes instead of 30 minutes.
But when I arrive home, I get the shakes again, a fever of 103, and my BP drops as low as 65/47. So I get very tired and have to nap for 2 hours. When I wake up, my BP is very high (like 185/135). I have had this fluctuating BP for as long as I have been on Herceptin, that is apparently a side effect. My heart checks out okay.
I am just worried about having a stroke.
For a few months, I did take an antihistamine before leaving home as suggested by my chemo nurses, but that made me tons worse. So that proves that it isn't an allergic reaction.
Denise
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denny, I’m so sorry you’ve developed this resistance to the Herceptin. Are you having another infusion today? I can understand your concern, and it has to be very trying on you. My gosh, to be on Herceptin 21 years is amazing. I so wish the process would go more smoothly for you. Wishing you all the best today!
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@denny123 I wish you all the luck in the world and even the universe. I hope they get it sorted out
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@denny123 I’m very sorry to hear the issues with Herceptin are still happening. I wonder if switching to the injection would make a difference? I believe it’s called Herceptin Hylecta. I hope your medical team is able to figure out how to help you soon and stay on track for another 22+ years. Keeping you in my thoughts!
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So sorry to hear this @denny123, we hope your doctors find a solution soon!
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Thanks all. I survived! I will see my onc in June so I will ask about the injection. Yesterday, I did have the shakes all through my infusion, but as soon as I stepped outside of the chemo center the shaking stopped….since it was 85 degrees. And my car was hot, so that helped. Once I got home, my BP was 75/47 and I had a temp of 101.5. Better than last time.
I have a different reaction each time so it is very puzzling.
Love to all,
Denise
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Dear denny123, wow, what a strange reaction… do you think Phesgo injection would change anything? Not cold and slow dissolving into bloodstream… hmm?
Saulius
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I had a surgery consult with my gyno earlier this week. She is willing to do a radical hysterectomy but explained how a less invasive oophorectomy should work well enough to get rid of the fibroid and adenomyosis found in my uterus since they’re both hormone driven findings. She also explained if my breast surgeon is okay with it she could do it at the same time as my breast surgery so I only have to worry about taking a medicine break once. I see my breast surgeon on the 20th so hopefully we can get something figured out there as the break from meds has been my biggest concern with surgery. My most recent Signatera test is still 0 / negative which is making me feel more comfortable to do surgery as well.
I hope everyone here is doing well, thinking of you all always!
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@bsandra thanks. I am going to ask about the shot instead of the infusion. But hair loss makes me hesitate…
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@denny123 I’m on the Phesgo injection (Herceptin and Perjeta) and I haven’t experienced hair loss. I think I recall reading on the H&P thread that it can be a side effect, but I’m not sure how common that is. The injection is great! Quick and easy. It burns a bit going in and at the end when they try to squeeze every last drop out, but the amount of burning also depends where on the outside of my thigh they choose as the site that day. I hope they can figure something out for you soon!
@jobbibo that’s great to hear that there may be an option to have them done at the same time and that there is a less invasive option for you! I can understand your concern about taking a break from the meds. For my mastectomy, I coordinated it between my Phesgo injections. For the Tucatinib, the sponsor and pharmacist said I didn’t need to stop taking the pills, but my MO wanted me to because it was an “unknown”. She felt comfortable with that decision because I was still on H&P. I stopped the pills for two weeks - one week prior and one week after. I was nervous about it but the want to get mastectomy trumped my hesitation. Good luck with your consult on the 20th! Please let us know how it goes.
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