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@threetree

Thank you for your concern about my condition. I truly hope that no one ever has to experience something this exhausting.

As for my tumor markers, they started at 90 and went down for several months until they reached 74, then began to rise again.

Now, after a year and two months on Kisqali, and with the continued increase, they have reached over 227 — with no clear explanation for this.

@irishlove

Thank you for sharing your experience with me; I am truly grateful for that, as well as for your prayers .🧡🧡

I have gone through almost the same experience, perhaps around the same timing.

For me, it started about two months ago, when I would cough whenever I encountered a strange smell. I thought it was normal since I already have sensitivities to perfumes and other unusual odors, so I ignored it and just used the nebulizer when the cough became strong.

But on October 7th, my temperature rose, I lost my appetite, had a cough, and sometimes the cough was so severe that it caused vomiting. I thought it was a virus due to the flu, so I took a fever reducer. After about a week, my condition stabilized and the fever subsided.

After that, I noticed extreme weakness, barely able to walk (I even started using a wheelchair) and unable to complete my sentences when speaking due to the weakness.

I decided to visit my oncologist, and after examining my lungs, he said I had severe pneumonia in my left lung and immediately requested a chest CT scan and asked me to return to him.

The scan showed that almost half of my lung was white, some areas solid and others scattered, which led the doctor to admit me to the hospital.

I entered the hospital on October 17th and spent four days there, then continued treatment at home for another five days.

During this period, my doctor asked me to stop Kisqali, but he didn’t mind me taking the Faslodex injection. I also missed the Xgeva injection for this month.

So I am currently without any treatment, for more than two weeks, in addition to the Kisqali break week.

Now I feel better, except for some fatigue and a cough that the doctor said will continue for the next month. He advised me to use cough medicine and the nebulizer.

I wish both you and me a full recovery from pneumonia and stability on our treatments in the coming period.

@cure-ious

I did only the most important gene mutation tests, and they came back negative — I don’t have any mutations.

This was the first step my doctor took after the tumor markers started to rise.

@eleanora

As for me ,I’ve completed 14 cycles of Kisqali so far, and after several months of gradual decline in the tumor markers, they started to rise again.

What my doctor told me at that time was that if the progression is limited to the bones only, it might be possible to treat the new lesions with radiation and continue the current treatment without any changes.

@tougholdcrow

Thank you so much for your kind message and thoughtful advice. 🌷

The oncologist I’m seeing now is actually the best one in my city, and the next step for a second opinion would mean traveling abroad. For now, I’ve decided to wait for my upcoming MRI results before making any further decisions.

@threetree
I feel the same way — I’m not fully convinced that tumor markers alone should determine a treatment change.

But, to be honest (and it’s hard for me to admit this), I also have a feeling that somewhere in my body the disease might be slowly progressing, even if it hasn’t shown up on scans yet. My tumor markers have been steadily rising by about 20–30 points every month, which makes me wonder if there’s something we just can’t see right now.

❤️❤️Thank you to everyone who shared their experiences and gave me advice. I am truly grateful to you all, and I also thank everyone who has kept me in their prayers.

@lafish Praying you have great results from your scans! My scan is next Friday so I understand how you are feeling!

@lafish Strangely enough, I don’t have a ton of scanxiety prior to tests; however, when I am getting ready to open the results in my patient portal, I have difficulty breathing and start to hyperventilate. That is the real moment of truth for me.

I pray your scans go well. As @norah2024 stated, tumor marker tests can be indicative for some people as to how things are going. I get both CA 15-3 and CA 27.29. They have both been within normal range following my first two treatments last year. However, I had minor progression last December and again in March of this year. Since I had started getting Signatera tests last October, the first of which was negative, I continued to get them with each PET scan. And, as you can see by my lengthy signature, my Signatera and PET results have been aligning. Since my recent PET was all clear, I am hoping my upcoming Signatera results are negative again. Has your doctor ordered a Signatera test for you?

I agree with @soldanella that it could in part be the Kisqali or just scanxiety that is causing loss of appetite. When I have a loss of appetite, it’s typically caused by a slight bug of some sort that’s going around. With all the other aches and pains I have from my medications, I’m never certain if it’s the medications or if I have some sort of bug.

I apologize for the long diatribe. I am busy watching my husband work on a simple fix to the dryer in our RV. However, it’s taking hours. We are planning a two week adventure starting next weekend. Can’t wait to get away for a while. Wishing everyone a great weekend.

Hugs, Pam 💗

@seeq - I'm sending a belated response and thank you for your previously asking about how my appointment had gone last month. (I've just been so, so tired that it's been hard for me to keep up with others posts, plus I don't have the energy to do much posting about my own situation either.) My appointment went OK and he told me that my options would be to continue with the Verzenio/Fulvestrant and get local treatment for the liver mets, or to try switching to something like Truqap or possibly Enhertu (I don't want to do that). Truqap is apparently the drug of choice for the AKT1 mutation that they found in my liver mets. It doesn't look like a "good" mutation at all, as it apparently makes the cancer cells more aggressive. I haven't read where anyone has done especially well on Truqap however, not at all as well as people seem to do with the CDK4/6 drugs and an AI. The oncologist did say that the pace of growth is very slow and that that is a "good" thing and gives us more time to make plans. My scans in September showed relative stability, so we decided to continue to watch and wait and see what the December scans show. In the meantime we will watch monthly tumor markers and I will consult with other doctors re the local treatment options.

As of now, I am going to see a liver surgeon at my main clinic/hospital in early November to discuss the situation and local treatment possibilities. (So far the onc and IR have been seeming to lean toward Y-90.) It's my understanding that the liver surgeon would be required or involved in other types of treatment like thermal ablation and more. I just don't really understand it all, so am glad to be getting this consultation. Then in late November I will be getting a consultation at another local hospital that does the histotripsy treatment. I'm hoping that with all these consultations I will be able to weigh all the options and make a wise choice about what to do. The problem is that with this liver mets development all of the options just put me one or more steps further down that road none of us want to take, and I just can't seem to get past that. I just wish I could keep chugging along with the CDK4/6 and fulvestrant for several more years - it does look like some manage that, although obviously most don't. I'm just so burnt out from all of this.

This is an update on my health condition.

After spending four days in the hospital and five days at home recovering from pneumonia, I am now feeling better and slowly recovering.

Before I developed pneumonia (and a week before that I suffered from a fever),

my doctor was uncertain about my condition because my markers kept rising, even though the PET scan and MRI of the lumbar and thoracic regions showed no disease progression.

Now, my doctor has requested that I undergo a full-body MRI to assess the status of the disease throughout my body.

The problem is that my doctor is convinced that the current treatment is no longer effective and wants to start me on Enhertu. What confuses me is that during my last meeting, my doctor told me that he intends to change my treatment plan based solely on the continued rise of my markers—even before seeing the results of the MRI that I will have next week.

I even started to suspect that the doctor is pushing me to change the treatment so that it can be administered in his private hospital, which would benefit them financially, because he always repeats that Kisqali is not effective after approximately a year or 18 months.

Is this true?

I’ve heard that many people continue on Kisqali for years. I don’t understand why he is pushing me to start Enhertu while I am under extreme stress about changing my treatment.

@eleanora

Thank you so much! I really appreciate your kind words. I hope your scans go smoothly and bring only good news. Please let me know how they turn out.