Best Of
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
Hi @tougholdcrow, thank you so much for your kind thoughts. I got back home late last night. I have to travel a while to get to appointments and then we go shopping. The scans show "less avidity" throughout skeleton, no progression and my femurs are apparently greatly improved. I am told even trainee radiologist could see the difference throughout my skeleton. Yay - I have dentist check-up this morning but that is just to ensure healing is occurring properly.
My onc is beside herself - the good scans, the tumour marker that went down again - now 11 and the neutrophil level that is the best it has ever been at 2.6. Go you good thing cacao. I take cacao rather than the chocolate and exercise - no stairs in my blood collector's building, and I have grown to love my early morning cacao and almond milk. While I love chocolate, I couldn't face Lindt in the morning and cacao is the main ingredient in Lindt dark chocolate. Onc even gave a great big tick on the results page that she gave me.
She also said that I don't have to take Prolia/xgeva given the really good result and how well I seem to be responding to treatment. She doesn't want to change a thing. She has given up on asking me if I feel pain and sneakily asks if I need another script for Pelaxia. I just said I have only used it for the dental pain and even then it gave me a headache so - no thanks.🌻🌻🌺
Re: My Husband, My Life, My Love, My Family, My Cancer
Oh Intolight - Thank you so much. I'm hoping there's something "off" about your MRI report as much as I am my scan. Re my own situation my latest is noting that the radiologist is a non-native English speaker, and wondering if in what seemed like a rush, he inadvertently used the word "metastases" synonymously with something like "lesion" or "neoplasm". One of my spots has been unquestionably thought of as a cyst for a good 5 years or more, and he just called every spot on my liver a "metastases". That just seems off to me. (Here I go, continuing to reach for straws or whatever. Well, maybe I'll be able to grab a straw or two for both of us - smile.)
Editing to add that I was encouraged by what you said about your onc thinking that your results might have been due to better imaging and not progression per se, and that staying on the same meds for the next 3 months was OK.
Re: My Husband, My Life, My Love, My Family, My Cancer
Hey Malleemiss251 - Thank you so much for the Koala good thoughts and supports. They are much appreciated. Holding out for a possible mistake or misreading on my part or something, until the onc at least, weighs in. I do not want to go off the drug regimen I'm on now. Fingers crossed.
Re: My Husband, My Life, My Love, My Family, My Cancer
This must be the week for liver lesions. I got my bone scan results back yesterday evening and all is stable there. Still waiting for the chest CT results. However, yesterday afternoon, I got the abdomen and pelvis CT results back that said, "Slight increase in size of multiple liver metastases." Needless to say, I was stunned and still am. They have considered me "bone only" with some "uncharacterized" liver lesions ever since I became stage 4. Prior to that they had seen what they said was a cyst on my liver, and then also a couple of small lesions that they said were too small to characterize. More recently, they have noted the cyst, claimed that one of the other lesions looked to be a hemangioma, and that the other one or two were "neither here nor there" according to what one ER dr told me. The onc agreed. No radiologist to date had ever seen anything that would have definitively called cancer or metastases. That were all as of about 3 months ago. Yesterday was the first time anyone said that any of those lesions was "metastases", much less all of them! I see my onc on Thursday and will see what he has to say. I don't know if he will get in touch any sooner.
I looked this radiologist up, as I sometimes do, when I get weird results, because sometimes they turn out to be a resident or something. Well, not in this case. This guy is in his late 50's and liver imaging seems to be his thing. Not sure just why he was the one who read the scan, but I think it's actually random. His "home base" here is at the "Liver Tumor Clinic" at the medical facility I go to. Usually it's just a random scan reading radiologist who reads and writes the report. I figure this guy either really knows what he's talking about, because it's his area of expertise, or he just sees liver tumor everywhere, due to his routine job (this is probably wishful thinking on my part). This report also seemed to have been written more bluntly and hurriedly than ones in the past. It came through fairly quickly to MyChart, so I wonder about that too. There's just something that seems odd about all this, unless it's just me not wanting to accept what could be reality. I got a bad/erroneous scan report last winter, so I'm now on the lookout for what could be possible errors in these things. I guess I'll just have to wait until Thursday when I see the oncologist. He usually has something positive and not as "awful" to say about what gets reported compared to what the radiologists usually write. There may also be other indicators (blood work, etc.) that I wouldn't know about, that might suggest this isn't as bad as it looks right now? Trying to hold onto some hope here …
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
@Rosebessie Thank you, Rose. I’ll let her know. She is back home now and resting.
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
For those who I told I would send my email to in the chat, I posted it wrong. I can repost it Monday. Sorry about that.
Re: My Husband, My Life, My Love, My Family, My Cancer
Sfcakes - Very interesting and helpful to read about your experiences with these scans. I completely agree that having to get the scans is anxiety inducing enough, and then even worse when there are errors or possible errors to worry about. I'm hoping that as happened with both you and Intolight, my oncologist will be able to offer some sort of mitigating commentary when I see him on Thursday. He seems to be real good at that. That's one of the great things about the doctors. They can know enough additional information to make a positive difference, but when I, as a layperson read the scan reports, I only have what the report says there at hand, with no other meaningful facts at my disposal.
Re: My Husband, My Life, My Love, My Family, My Cancer
My oncologist just called. She conferred with other radiologists and they all think it is just a finer resolution of what has been there before. Different types of scans show things clearer and in different types of tissues, etc. It fits with our discussion of CT, vs, Pet, vs MRI vs bone scan. So she wants me to keep on with my current treatment and she will rescan in three months. I am good with this. I have had liver metastasis since my first scan eight years ago so I think this may be right. My cancer also seems to grow slowly and my markers are unchanged with no new symptoms. Different scans have showed different things in my liver in the past. Thank you for your prayers and letting me take you with me on this wild journey.