De Novo Stage IV
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kbl: thank you for the info.
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Elderberry, You're welcome.
I hope your PET scan is stable, or better yet, showing less cancer. 0 -
Sincere wishes for safety and peace for Saulius and family and everyone in his part of the world. ❤️
Just got my six month scan referral too! Will be making my appointment soon!
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Dear All, thank you so much for your best wishes and kind words. Situation is tense like never before - mad man's army is just 150 km away from where I live, curfew in our border region, news only about Ukraine, our army on highest alert ever. If something, I am sending my Sandra and Vijus away and going to fight. I am proud of few things that I witness myself today: our NCI and other cancer clinics took over many cancer-patients from Ukraine, many children among them (mostly with blood cancers). Ukrainian used to be treated with older drugs and protocols, so doctors are running around like crazy, working night shifts to adapt and change everything for them. Hospitals are also waiting for wounded after bombardments. Many of us allocate Ukrainian families - elders, women and children, while men are left to defend their country. Around 1000 people arrive here every day now. Everything will be fine - we are stronger and more united than ever!
Sandra will have her ultrasound on the 24th - let's hope everything stays as before. Lots of hugs to all of you lovely and brave people,
Your Saulius
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Saulius, I find it difficult to imagine your reality right now but I join the others in wishing you well. Sending peace and good luck to you 🙂
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Good to see you post Salius. Wishing you and Sandra strength.
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Saulius: Every time I see the map I think of you and other countries bordering Ukraine and Belarus. It has got to stop!!! I feel so helpless so far away. I wish your country peace and stability. Keep us posted on Sandra's ultrasound.
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Saulius, I’m so sorry you’re having to deal with this. You are in my heart, and Im wishing the best outcome. Hugs to you and Sandra. Please post whenever you can to let us know you’re okay.
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Saulius- I am thinking about you and hoping the crazy evil ends very quickly. thank you for helping your neighbors in this very difficult and dangerous time. stay as safe as you can
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Illimae, glad to hear you are “crawling out of the other side of these horrible 5 months“
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Saulius, I am joining in to let you know that you, Sandra and your son have been on my mind and in my heart since you live close to the where Putin is attacking. Along with all on here, I thought of the thousands of people (men, women and children) who are either on or need life saving treatments that are canceled or just have to be halted due Putin and his evil assault. It was a relief to hear from you. Please stay safe - we are "in Sandra's pocket" for good ultrasound results on 3.24.
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Dear All, thank you so much for all for your support. Ultrasound was good - nothing is seen nowhere:)P Continuing marching on! Hugs hugs, Saulius
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Saulius, that's wonderful news. Congratulations. Hugs to you both.
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Saulius, congratulation! We're super gad to hear that. And thank you for the update!
The Mods
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wonderful to hear that news Saulius!
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Have not been on in awhile, between work, travel, and the trouble on the site. Many new people and moving stories, my best wishes to all. Saulius your perseverance is very moving, prayers for Sandra, you, and everyone in range of Putin's insane violence. Good to hear about the ultrasound results.
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Great news, Saulius!
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prairiesea, it’s good to see you back. We do tend to worry a little when we haven’t seen someone. I hope things slow down for you after being so busy.
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Saulius,
So sorry people have to go through the tyranny. My thoughts and prayers are for this madness to end. I hope you remain safe.
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Saulius,
So happy that the sonogram was great.
Always thinking of you and your family.
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Thanks KBL. Hope you are feeling well. I'm ok, and had a lovely time in Hawaii. But I'm still struggling with headaches and hoping for some understanding of what's causing them after a brain MRI April 5.
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prairiesea, I’m really doing pretty well. I’ve been on Xeloda and Faslodex for six months, and I think they’ve tamped things down a bit. I’m so sorry for your headaches. Please let me know how your scan goes
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Hi all, I am sorry for being offline for awhile, lots of things happened at once. KBL thanks for reaching out to me it means a world to me ❤️
too many posts I should read them all, until then congrats to KBL and Saulius for great news.Hugs
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So glad to have you back, Snow-drop. We missed you.
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Dear All, thank you so much - you are amazing. We are safe, Lithuania is safe, ready to fight if something!:) Hugs,
Saulius
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So glad you’re safe, Saulius
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Not great news.... had a CT with contrast today which MO thought I could get quicker than the PET/CT the insurance company turned down. It was indeed quickly scheduled and quickly provided to him, and he called a few hours later (on a Saturday, which was both impressive and ominous). It revealed a blood clot near my ovary, for which I'll need to be on blood thinners. It also revealed "several" liver mets. There's been one liver node showing up repeatedly on imaging for over a year, always interpreted as a likely benign cyst, until now. He wants to do a biopsy to see if this is a different type (ie.e. HER2 + instead of ER+) and also genomic testing. He also also wants to hit the liver mets with chemo asap, he didn't say oral or infusion. I took this all in saying it was not good news but also not what I have been most worried about, which are headaches getting more intense and frequent, with more lightheadedness, every day, and in one case an ocular aura. He thinks I should go to the ER where they will CT my head and possibly follow up with an MRI (we agreed on Monday as my experience when I was taking care of my mother was that ER visits on the weekend tended not to result in much until Monday anyway); otherwise I'm waiting until April 15 for an MRI that was rescheduled from April 5.
So this makes both the coming week and the coming months look very different. He assured me I could probably still make it to my graduate student's dissertation defense Wednesday, so I'll probably go. Just hoping I can, perhaps with some short term interruption, continue on with the plans I'm carefully put in place for what I want to accomplish during a teaching leave next year. But it also makes me wonder how much longer I'll be able to keep working. The leave, and my own ambitions, involved at least a year of teaching after the leave. I've resigned myself to retirement if necessary at that point; sooner would mean relinquishing more work goals than I can easily reconcile with. But, we don't get to pick.
I'll start reading up in the liver mets thread....but any info here would also be greatly appreciated. My bone mets appear stable--so can I have ER+ in my bones, as previously diagnosed, being controlled by Letrozole + Verzenio, but something else, like HER2+, in my liver and possibly brain? Would you then get treated with drugs and/or rads for both?? Or if it has changed to HER2+, have all the sites likely shifted?
Trying to stay upbeat and practical and on track with my life, but it feels like a different track. About of year, altogether, of Ibrance/then Verzenio and letrozole and my back feeling so much better I hoped I was poised for a couple of years progression-free and bone-only. This feels a bit like the confusion of the diagnosis itself, a little over a year ago. Sorry to be so self-focused when so many are going through a lot, but this was....a lot.
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prairiesea, you deserve to be self-focused. Never a need to apologize. I'm so, so sorry for what you're going through. I hope that they can figure out what's going on with the headaches and that it's not cancer. I stopped working a year after diagnosis. I give you great credit for continuing to work with all you've been through. I will be thinking of you. Please let us know how it goes if you go to the ER Monday. I don't have liver mets that I know if, so I hope someone chimes in. Hugs.
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prairiesea, I’m sorry to hear your news. I can only imagine how stressful this is for you. I hope you get some comfort from those on the liver thread. I know some people who have had liver mets who were able to get it under control and are still managing well after ten years. We’re all pulling for you to do well with your treatment. ((Hugs)
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prariesea - that first progression and move to new drugs sucks and it makes you question every ache and pain and to reevaluate the path you had cautiously planned out after you got over the shock of the diagnosis. But don't lose heart until you have all the info and remember is always ok to scream and yell and cry at the unfairness of this all. I think that is especially true for career-driven folks who had work goals they wanted to attain and were striving for and now have that control taken away. Ive been taking a step back from work to consider other goals (what would I like to learn? what would I be happy to achieve outside a traditional work environment that would work with ongoing cancer care?) for the future. Goals that are flexible and manageable that dont depend on meeting checkpoints or internal office politics that I also don't have under my control. Almost like a mental bucket list in a way!
As for testing - I understand that yes, you can have mets acting on different pathways which may have similar or different hormone receptors to the original sites. I know more than a few of the liver ladies are in this situation, so they will probably be the best source of info as to how/when this is managed.
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