How are people with liver mets doing?
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Hope...my MO replied not to me directly but to the nurse who told me she thought maybe it was bc it was and "off" dose..it was like 7.5mg...or 7mg... the medium dose...I told her I think i would rather try verzenio....so she was gonna send her another message. I literally heard like a lot of ppl on FB saying they all got pheumonia and infections of the lung lining bad from Afinitor....I am going on to that drug UNHEALTHY...if I was healthy I would feel different and more willing to risk those side effects...I feel like maybe the Father either doesn't want me on that...or not on that dose...but its something...
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hey everyone !
Just got my scan results. I’m responding really Well to treatment! Most of the lesions are gone or “barely perceptible , if at all”
My largest lesion was 4 cm and it was said it could barely be measured but it’s no more than 2 cm, and the two others they could see went from 8mm to 1 and 5mm to 2.
The blip on my bone scan turned out to be a hip impingement (sclerotic tissue due to extra bone formed as a child. Irregular bone shape )
I’m still on track to complete the last 3 cycles (9tx) and then go from there
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Congrats BA'P!!!!! AWESOME
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Congrats B-A-P !!!!!
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BAP, that is great news.
Nicole, I am sorry to hear about that drug being unavailable. Sometimes I wonder too if something is a sign. Did you previously try ibrance? I can't remember. My wife switched from ibrance to verzenio, and it appears to be working. Can't say for sure if its the different cdk4/6 inhibitor, or the switch from letrozole to exemestane. Her Onc thought exemestane might be worth a try as it works differently from letrozole.
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BAP,
Your report sounds terrific. Congrats!
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Great news, BAP!
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Congratulations BAP! Happy Dance!!!
Nicole, the FDA tracks drug shortages & there's nothing listed for Afinitor/everolimus so maybe it's just a short delay? https://www.fda.gov/drugs/drug-safety-and-availabi...
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B-A-P - AWESOME NEWS! We love to hear this!!!
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hi y'all. The MRI to determine this new 2.7 cm liver mass found by CT was scheduled for 3/19, but I couldn't wait so called and found a cancellation for the Friday, 3/12 at 7 pm. These are the exciting things we do on Friday nights, right? My MO sent all my background and new CT scans to an IR I have consulted with before at Atrium in Charlotte, NC. Should get a consult soon after the MRI. Hoping I can still squeeze in a trip to see my Dad for his 92nd birthday on March 20!! He is not aware of all this going on with me. He needs peace at this time of his life. He always tells me I will understand things better when I am his age. I wish Dad, I wish!!
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Great news BAP.
So, I had my consult with my RO. As it turns out, I have limited options for local treatment but may be a good candidate for a SABR trial given that, with the exception of the liver mets, I seem to be stable with my indolent disease. Moth, I think you may have mentioned that they wanted to recruit you for this trial. Having said that, my RO wants to wait to see if the Xeloda has a positive impact as there is little point to having the SABR treatment if chemo is working - at least for now. There is no rush as I can look into the treatment at any time if chemo starts to fail or I have a stubborn met.
I scan on March 29th so we will see, at that point, where things stand. She's going to contact me again on April 6th. So, a good meeting in my view. Glad to have had the conversation.
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Sadiesservant,
Sounds like a good resolution for you for now. Hopefully the Xeloda is doing its thing and you won't need to jump to SABR just yet.
One caution, though: a trial can end recruitment, so it's not totally open ended for your to decide. In fall of 2019, I was offered a trial at my center. I declined and continued on I/F. At some point in 2020 I inquired about moving to the trial and was told they were no longer recruiting. I don't know much about how these trials figure out when they are/are not recruiting -- if it's number of people enrolled or what was in their original clinical trials proposal or what. So just bear that in mind.
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Ok well we are not going to go with Afinitor right now...now only because the dose is on back order...but going into to this unhealthy we decided to first try Verzenio... my MO just sent me this:
Hi Nicole - I have requested for to submit the prescription for the Verzenio 50 mg tablets tomorrow and seeing if we can cancel the Afinitor. One question for you. Afinitor can only be paired with exemestane or another aromatase inhibitor (letrozole or anastrozole). Verzenio can be paired with any of these or with faslodex. My preference is actually to pair the Verzenio with the faslodex so we can save the aromatase inhibitor for the afinitor that we may use in the future. Would this be ok with you? Faslodex, as a remind, is an injection in each buttocks. The shots are every 2 weeks x 3 shots and then every 4 weeks. Again, verzenio can be paired with any of them, but wondering if we could use faslodex since we might not be able to in the future. You have had both of them and know how you do with the shots, so just let me know.
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Nicole,
I think that sounds like a plan -- and it's worth trying out. That also preserves the affinitor for future use.
Personally, I don't mind faslodex -- I know that folks here have definite preferences about it, but I much preferred it to letrozole, which, as time went on, really messed with my joints. But of course you will have to decide what works best for you.
Here's hoping that the Verzenio + ? works well for you. It's actually pretty exciting that you can make this move, and I think that's positive.
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I am on Verzenio plus exemestane and faslodex. I started with verzenio and letrozole, but when mets went to bone, they switched me to exemestane to pair with verzenio and added faslodex. My MO still said my likely next treatment will be affinitor plus AI.
Right now, after quite some time on verzenio, my ANC dropped and creatinine started to rise at same time. Who knows why. So a 2 week break for me to see if this will normalize amd I can resume. My MO wants me on this as long as possible....
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Nicole, that sounds like a good plan.
I finished my third cycle of Eribulin and will start the fourth on March 17. My scans are on April 1 and 4, results April 7. I’ll finally know if this drug is working.
I’ve been surprised that my WBC has not been affected. In fact, last Wednesday it was high, so were ABS neutrophils. That indicates bacterial infection but I didn’t have any symptoms so they gave the infusion. Four days later I started having the symptoms of UTI. I was able to get on the antibiotic and AZO on Monday. The painful urination and bleeding only lasted two days. I think that’s very interesting that my labs showed indications four days before I had symptoms.
I bought my wig even though I still have enough hair to put up in a ponytail pouf. Each cycle it seems to come out more but not in clumps like the other three times I’ve lost my hair. It’s really pretty, I’ll post some pics.
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It’s kinda hard to tell what the front looks like. It’s amazing that with the lace top it looks like a real hairline. All my other wigs had bangs so the hair line wouldn’t show. I’m not sure I can wear it up in back, I’ll have to play with it. I do have a styrofoam wig head now
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Grannax- I like the wig. Pocket duty for the 1st, 4th, and 7th.
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Grannax, the wig looks great. Pocket duty also for the 1st, 4th and 7th.
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Grannax,
The wig is really very pretty -- good choice.
Thinking of you as you move to your scan period. Hope that drug is doing good things for you.
Re the UTI -- my mom passed in 2016 at the age of 92. Probably the year before, she was showing signs of something going on, and so her assisted living place shipped her off to the hospital. The docs did a test for UTI and it came back positive, although she had no signs of UTI. I was told that because symptoms don't display so much as we age, this is fairly common. So you could really have had the UTI and just not shown any symptoms of it before it showed up in your bloodwork. I now keep on hand the little box of UTI tests from my local CVS to check my urine any time I sense a change in smell or look. Of course, again, many of our drugs also change the smell or look of urine, so it's not foolproof, I don't think. Glad that the antibiotic cleared it out.
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Affinitor - it took 21/2 weeks, but is on its way. I have to get it through insurance specialty pharmacy, Alliance-Walgreen. DR office said it took some work to go through insurance (and why do they have to bless it?), no mention of a shortage. Reading possible SEs make me really scared to take, but supposedly Exemestane(Aromasin) works better with it. Also DR said she did not have anything else for me after taking me off of Ibrance/Arimidex.
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Sadiesservant, I have that trial document package here somewhere & will see later if I can see where they're at with it. I think it has been running for some time so there is a risk of it enrolling enough pts and shutting. I know someone else who enrolled very recently and was randomized to standard of care arm. She stayed on but I dropped out.... I think that means I can't try to enrol again latery because it would look like we're trying to spin the wheel over & over again so I think if I want SABR in the future I would have to go private - which I'm prepared to do if necessary.
I would like us British Columbia girls to talk to an IR about liver tx as well because that's a whole different thing & it never seems to be mentioned as an option. I have to read through the local liver treatments thread more carefully because I don't really undersand why 1 method would be chosen over another...
Fingers crossed Xeloda is smashing it anyway!
Grannax - oooooh so pretty!!!
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Thanks BevJen and Moth. Yes, I recognize that the trial may close but it appears there is not much choice as, if chemo is demonstrated to be working, I don't think I would be eligible anyway. If I have all the details correct, the purpose of the trial (I believe it is a large international study) is to see if they can demonstrate an improved OS, in addition to systemic treatment, with the use of SABR on oligo progression. I would be considered given that my pleural/bone mets appear to be stable but now I have had limited progression in the liver.
I'll know which way things are going soon...
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hi everyone, just writing to wish you all well, its encouraging to follow your progress. I cant check this site very often because several letters on my keyboard dont work and the neuropathy akes it too hard to type.I am ok but missed my last scan because Im too afraid for bad news what with being on my last treatment option.how do you find the courage? my younger daughter turned 15 today and I am grateful i could be here for that. love and peace to all! /amy
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arolsson- thank you for connecting with us here. You were involved with this group before I joined. Please know we are here and supporting and praying for you. It is so wrong what this disease takes from us. I am sorry that I do not recall your history, but are there any chances for other treatments if you get a second opinion or clinical trial? Many people on this site seemed to have found options when it seemed none were left. I pray for that for you. And I pray for peace for you, strength,and time with your family and loved ones.
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Hi all I want to thank all of you that prayed for me and wished me well and kept encouraging me and sent me PM's...you all will never know how much it means to me (and my husband, I read him your messages) and how grateful I truly am for all of you. I am feeling a bit better today PRAISE GOD!!
So you all know I was mentally feeling what I thought may have been sadness depression but I realized it was despair and there is a difference between sadness and despair. I don't want to feel despair!!! I do have an appt to speak with a therapist from my cancer center on Thursday.
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Good for you Nicole. Make sure your therapist knows what you need now and ongoing, not just what you’ve already suffered... speaking from experience.
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I just got caught up with the messages. I have been in the hospital for four days now, hoping to be discharged tomorrow. My foot started swelling up and this time it looked infected. My oncologist sent me to the urgent care, where all kinds of blood tests and imaging were done. Diagnosis was vasculitis and cellulitis. So IV antibiotics were started along with steroids. Foot looks a lot better. The MO in the hospital thinks it is a reaction to the chemo (again).
I guess I will be off Anthracycline for now. I am seeing my regularMO on Thursday and will find out what is my next option. She had mentioned Immunotherapy since I am PDL1 positive and also Anti-androgen therapy.
Has anyone here taken anti-androgen tabs and saw stable liver Mets? From the research I have done, there is no conclusive data to show this to be beneficial. Any information about this would be helpful.
Thank you all for your help and support.
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