Another update and back to MBC!

[jersey-jazz]

Saw the test results from the portal regarding the Aortic valve. In among the test results is the sighting of three new lesions in the liver. When will it stop?

[kokopelli2017]

hi JerseyJazz.

I am sad to hear this. I have been following your story closely. so much on your plate already and not good timing for that news on your liver. (although is it ever good timing😔) . please try to just concentrate on your upcoming surgery....one step at a time. this new LAVR approach is amazing and you will have such a healthier heart with minimal down time. but you know all that. and after recovery, then turn your attention to your liver....you will get through this🙏. you are a strong woman💪.

I am inspired by your resilience, your strength, and your wonderful attitude. and you write as though you are twenty something😉. you are so young at heart❤️. hang in there!

sending hugs....

carole💛

[jersey-jazz in reply to kokopelli2017]

Dear Carole - I woke up this morning and read your note. It appears that the surgery will not be right away. Thank you for your kind and thoughtful words. Carole, I was doing my own thing for all these years, minding my own business when I got to be this age. it's not my fault that I am this old!

XXX OOO

[kokopelli2017 in reply to jersey-jazz]

🤗❤️

[Nocillo]

So stressful! Do try to deal with one event at a time. We need a cure now! Take care!

[jersey-jazz in reply to Nocillo]

Dear Nocillo ---My reply to you has not appeared. It is in the ether, somewhere. To repeat, what is taking them so long? If it were their women that were suffering, they well get their finger out. To bad that we are all too exhausted to start a country wide protest.

[Nocillo in reply to jersey-jazz]

so true!

[Hazelgreen]

I'm sorry to read this, Francis! I fully agree with Carole's comments. Keep your focus on your heart, and then deal with your liver.

In any case, if your liver enzymes are all in the normal range, as are mine, your liver is still doing its job so it doesn't need your attention. Perhaps, liver lesions are common at our age (I have at least three myself).

Best Wishes, Cindy

[jersey-jazz in reply to Hazelgreen]

Dear Cindi---My blood work shows that everything but my liver is good. The ALK is extremely high and has been for several months. Lets face it. I am in deep dodo.

[Hazelgreen in reply to jersey-jazz]

I didn't learn much when googling ALP: "alkaline phosphatase (ALP)" but it doesn't seem that dramatic: "If your ALP level is high, your doctor may have you take another test, called an ALP isoenzyme test, to determine whether the alkaline phosphatase in your blood is coming from your liver or your bones." It seems the cancer in your liver is very likely the direct source in your case. Perhaps, obliterating the liver tumours you had previously wasn't the best strategy???

Anyway, Francis, you and I wish to continue living, but we are old and the body does wear out so, unless we can get new parts (such as heart valves), perhaps we best should avoid adding extra poisons to the mix...

[jersey-jazz in reply to Hazelgreen]

Thank you for doing diligence as regards ALK/ ALP. Actually, when asked for the blood results, the doctor mentioned that the ALK was the only thing of concern in my blood work and it was a reflection of the poor condition of my liver. We are damned if we do and damned if we don't. I never questioned the removal of the other lesions.

[jersey-jazz]

I see that these CT scans are disagreeing in a way with the scan on Thursday and these scans are what the dr will go by. It looks to me as if there will be a period of time before everything is in place for the TAVR surgery. Up until just a few days ago I was in a hurry to get this heart thing done and dusted. Now, not so. I need to get the cancer taken care of, if at all possble. I think they will tell me what I already know, after their staff meeting, that they will wait until the stenosis gets worse and the opening gets smaller. I am now concerned that the wonderful Fulvestrant that does not give me any side effects, is not working. So, it might be on to the third cancer treatment in three years, or not. It is all these unknowns that make my head crazy.

Of the three new lesions in my liver, one is 5.3 cm. They have appeared and grown since last July when I had two cancerous lesions microwave ablated. Had another big one ablated in 2021 and had to use the pain relief pump a lot.

Nevertheless, we are here and we support each other brilliantly. I feel it. Thank you!

[TammyCross in reply to jersey-jazz]

Three in three years. Me, too. I am so glad when they work that I forget that it is not good that the previous one stopped working. Probably not a good time to get into a clinical trial, but if you can, possibly, the oral SERD cleaned up everything for me after fulvestrant failed. The trial I was in had the protocol with this name: ZN-c5-001, sponsored by Zeno Alpha Inc.

[jersey-jazz in reply to TammyCross]

Well done, you! Thank you for the heads up.

[Mumberly]

my thoughts are with you as you are on this new ‘hurry up and wait’ schedule.

Stay strong and hopeful, as challenging as that can be. And keep the faith as I know that is a big part of your life 🙏

Kim

[jersey-jazz in reply to Mumberly]

Thank you so much for thinking of me and reaching out to me. When we need cuddles, we often get them right here.

[mariootsi in reply to jersey-jazz]

Sending love and hugs.

[fancydog]

Praying for you, this disease has a way of throwing a wrench in so many things that ordinarily would be smoother.🙏

[jersey-jazz in reply to fancydog]

I need these prayers. They will certainly help me along. Thank you!

[Granny333 in reply to jersey-jazz]

praying for you

[TammyCross]

Oh, no! I keep forgetting, when things are going well, that eventually it will pop up somewhere else. At least the liver is not the worst place.

Agree completely with Carole/Kokopelli: you are amazing! And heart first. Put aside mbc concerns (so hard, though, to do that).

And agree with your disclaimer about getting old. A couple of nights ago, I parked on a dark isolated road in Manhattan, and was rummaging around in the back for an umbrella. Police came along and shined a bright light on me. They thought I had broken into my car and was stealing stuff. Another police car came to help with apprehending me, and the first officer yelled, "It's just an old lady." I took umbrage! I am quite capable of theft!! In fact, maybe I should turn to that as my new hobby. Maybe it is time for a face lift.

Why is heart surgery postponed? How long?

[jersey-jazz in reply to TammyCross]

Damned if I know. Thats the trouble. I officially now nothing. I glean info from the portals which are now autmatically forwarded. Then I have to make up a scenario to make sense o it all. Often, I am wrong. From those portals, I deduce a delay with the TAVR. The numbers are not right for action.

I love your story which includes your feisty reaction. More power to the people!

[TammyCross in reply to jersey-jazz]

You are at MSK for cancer and Columbia Pres for heart? That is smart, just right -- but you cannot message them on the portal? My oncologist at Columbia doesn't use the portal for messaging, just posting results. This is annoying. But I have her email and that of one of the three oncology nurse practitioners, and they usually answer my questions.

That is not right that you can't get an explanation of the delay. Does your cardiologist take messages on Connect?

[jersey-jazz in reply to TammyCross]

The nurse practitioner told that the medical staff will discuss my situation at their regular early Wed morn meeting. I will know more then. I'm jumping the gun by reading the test results as soon as they are in the portal. Got home from New York, walked in the door and went straight to the computer with my coat on to rea the report.

[jersey-jazz in reply to jersey-jazz]

P.S. It is interesting that you have the nurse practitioner's email dress. When the nurse practitioner calls me on Wed morn, I will ask her for her email. It would make things easierforme.

[mariootsi in reply to jersey-jazz]

All the best Wednesday. Will be thinking of you. Let us know what happens please

[daniellebrooks13 in reply to TammyCross]

I always wonder (for a moment) who they're talking about when they call me an old lady!

[TammyCross in reply to daniellebrooks13]

Couldn't be me, or you! Who is it? Some old woman standing behind me?

There was a woman cop there, too. She was the only one who laughed when I said I was perfectly capable of stealing from cars.

[PJBinMI in reply to TammyCross]

Women get it! Kudos to that woman cop! (and I bet she has stories to tell about her male colleagues putting her down!)

[jersey-jazz in reply to PJBinMI]

Don't we all, every one of us, have stories to tell about the men near us. Mine just walked off the set, by the way. He's a "naturopath" and wants me to put a warm polstice on my liver area to cure it. However, that's another story, not so funny.

[TammyCross in reply to jersey-jazz]

That sounds a bit annoying. A warm poultice and poof, no liver mets? If only. On the other hand, can't hurt, can it? Might feel soothing

[kokopelli2017 in reply to TammyCross]

lol. funny story. thanks for the laugh😂

[NPmary]

Let us know how your doctor visits go and how you are feeling. 🌺

[jersey-jazz in reply to NPmary]

Thank you and I will.

[PJBinMI]

You have so much going on at once! It would be great to listen to that big medical discussion on Wednesday! I hope you get a treatment plan right away after that discussion, and that it sounds reasonable to you! Sometimes I joke that what I need is a transplant of my head to a much younger body! These aging bodies are so full of problems. I take so many pills every day! I have so many doctors I could field a baseball game with them. (I have to find humor in all this.) You have great medical facilities there in NYC! Does that give you some sense of security? Do keep us posted; I suspect alot of us will be thinking of you this week, esp Wednesday! Sending love, prayers, and cyber {{{hugs}}}

[jersey-jazz in reply to PJBinMI]

Dear PJinMI==You are really good medicine for me. I hear what you are saying. Rather than calling our baseball team of medical personnel, "problems", let's call it something else. I am coming up empty. Maybe we should pride ourselves on the clever way we manage these baseball teams and manage our own health as Captain . What say you?

[PJBinMI in reply to jersey-jazz]

Maybe bumps in the road? I think of myself being on a journey, and cancer seems like a big pothole! lol

[Granny333 in reply to PJBinMI]

I like this .

[Pbsoup]

goodness what a lot to go through. But you are in good hands. Who is your cardiologist if I can ask? I have an old friend who is a cardiologist at Columbia Pres. so just being nosy

So so so annoying about the liver. And that you had to find out on your own. The portals are great but also troublesome as it can be so panic inducing. Hopefully things will be clearer on Wednesday. Even if the news isn’t rosy, I feel more in control when there’s a semblance of a plan to follow. It’s all the rumination in the meantime that’s so awful.

A friend who’s a psychiatrist said when faced with a troubling situation. Imagine the worst possible outcome then imagine the best one Then using that, think about what’s most likely, which is usually somewhere in the middle The middle can be ok

Xoxo

[jersey-jazz in reply to Pbsoup]

I have one in NJ but the surgeon in NYC is a Dr George and another one who came into the room but didn't stay long enough to say hello. Dr George spent less than five minutes with me and I was studying his face so I would recognize him, next time. However, he is a surgeon and I m told that that is their way. Is he the doctor that you know? I'm now much more concerned about the new cancers growing so rapidly in my liver. Seven months ago, the second and third ablation were done and the liver was clear. The largest of the three lesions is 5.2cm. That's pretty big or such a short time. So, I suppose that they will have to act fast and I will get zapped again, three times

[Pbsoup]

at least they can still zap? How fricken scary. I am so sorry you’re dealing with so much at ones. I am waiting to get mine zapped too.

I think it is the doctor I know. Sent you a PM with a confidential story about him. You are in amazing hands.

Xx

[Ursula_I]

Thinking of you today.

Strap on that brilliant sense of humour you have!

All the best

Lucy

[jersey-jazz in reply to Ursula_I]

Dear Ursula1, thank you! It helps to make fun of the boogy man, at least for me.