How are people with liver mets doing?
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BAP, that is really encouraging. Can't remember, but did you talk to them about diuretics? There is some combo of two, that cancel out some of the side effects. If you are interested, I can ask my wife.
Nicole, that is crazy about an abraxane shortage. How can that happen? Offshore production?
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pretty sure Abraxane is made in the US. Bristol Myers Squibb hasn't said what the issue is, just "manufacturing delay". Next update is mid-Nov
https://www.accessdata.fda.gov/scripts/drugshortag...
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BAP, you are really amazing, your doctor is right! Saulius
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I haven’t been keeping up here because I’ve been preoccupied with with my situation. A horrible mess up happened in regard to the clinical trial I was about to start.
It turns out that I don’t have the correct ESR1 mutation to qualify for the trial. It’s a long story but the short version is that the ct coordinator made a big mistake by not reviewing my records correctly. The worst part is that she told me two months ago that I qualified, got my hopes up then on Friday sent an email saying I don’t qualify.
Yesterday, my MO called me. She’s very upset about this error and says it will go to the top. Meanwhile she is has sent my records to another cancer center here to see if they have a trial I qualify for. Also, if I do not, she wants to use Exempra +Xeloda. She’s concerned about how long it would take to get expanded access for Trodelvy. She doesn’t think we have time to wait, based on my MRI.
Needless to say, I’ve been an emotional wreck since Friday. But I feel better today knowing my my MO understands and that we have a new plan of action.
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Grannax2, So sorry about your situation. Some mistakes are more serious than others and your MO taking it to the top is important. I hope your next options turn things around quickly!
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Grannax, that is just terrible. What a screw up. Praying that another good option for you will take its place.
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Grannax,
What a mess. Have they checked with MD Anderson about trials? I know you don't go there, and I don't know where it's located with respect to where you are, but my impression is that they have so many trials, it's a likely place for a search?
Good luck. I hope it works out for you.
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Oh Grannax I hated to read your post. You do not deserve this. I am glad your MO has a Plan B and I hope this next treatment option really gets things under control and fast. I cannot advise you on the clinical trial options as I don't know that much about them. My prayers are with you.
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hey husband ,
I was in diuretics once but they took me off I can’t remember why. But now I have an indwelling drain so I can drain whenever which is helpful !
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Oh Grannax what a disappointment, glad to hear you are going to the top of the pile and I hope a treatment/ trial that suits you starts soon.
B.A.P. enjoy the felling of being a superwoman, even if only for a few days. How often does a doctor call anyone 'amazing'!!
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Grannax, oh I'm so angry on your behalf. HOW could they make such a mistake?? Ugh. I'm glad your MO has a plan B and I'm glad you're feeling calmer about this. This disease throws enough curveballs that we don't need them from the medical team that's supposed to be helping us...but I guess we're all fallible and make mistakes. Still. Grrrrrr
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Denny -it’s true ! I like proving them wrong
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Putting this here, even though it could go a bunch of places. Many of you know my saga from this past spring, with 44 days in the hospital, etc. I had a CT scan in June as a baseline after all of that. I had another one today (3 month scan) and the report was up an hour later. I have bone and liver mets. The bone mets were basically stable from the June scan. The liver mets, however, said this: "Marked interval improvement in hepatic metastatic disease" and then the report gave a bunch of measurements showing decrease in size of liver mets.Since my surgeries in April a week apart, I've also had evidence of pleural effusions, but those, too, seem to be decreasing.
I am so relieved by this. I feel like I've gotten a reprieve (why do we always have to feel this way?) I am currently on neratinib and xeloda, but a low dose of each.
Just wanted to let you all know.
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BevJen, That’s a fabulous report! Enjoy the reprieve and the relief 👍😊
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BecJen- fantastic news!!
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excellent news bev!!
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awesome news Bev! so happy for you
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Grannax, I’m so sorry about the issue with your trial. It’s awful. The one positive is that you clearly have an MO who is in your corner. Hoping you land on another treatment that holds you steady for a good long time.
BevJen, fabulous news. So happy for you!
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Good news BevJen
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BevJen, we celebrate with you! Saulius
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BevJen and BAP, I'm doing a happy dance for both of you!
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Thanks everyone. I’m glad I have your support.
Happy Dance Bev Jen.
I’m having my PET today
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Bev soo soooo happy for you!!!
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BevJen, that is just excellent!
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Woohoo BevJen !!!!!!!!! So happy for you !!!!!!!
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BevJen, glad this treatment is working. Hope it continues. Hopefully your QOL is good.
I am on Keytruda, Carboplatin and Gemzar. Since my blood counts were very low, my MO has dropped the carbo and I am on weekly Gemzar.
Nicole, it is interesting to note that you had zero side effects with halaven earlier but now having fever. I am experiencing the same with Gemzar - I had no SEs in 2018 but started having fever for two days after Gemzar infusion. Taking Tylenol helps.
I only hope everyone has regression in liver Mets. I have yet to see this with my treatments. Next treatment maybe halaven for me.
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Wow. Well that was unexpected! I had my first infusion of Vinorelbine today. I had zero nausea but immediately had a bit of an odd sensation in my body, felt it a bit in my chest but particularly in my stomach and gut. By the time I got home, I had a definite stomach ache which persisted for several hours. Well, by about four hours after the infusion… BIG D.
WTH? I actually find it a bit amusing (sometimes you just have to laugh at the “crap” we have to deal with - forgive the pun). I was so focused on the typical SE of constipation (it was a huge issue for me when I was first diagnosed due to Zofran - I remain convinced that it could be used as a weapon of mass destruction) that I was considering taking proactive measures. Thank goodness I decided to wait and see…. It could have been epic. LOL.
Otherwise so far so good. Now, let’s hope it shrinks those little fiends in my liver
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Bev- great news. Enjoy
sadiesservent- hope you’re doing better. Hope D clears up and you feel better.
Had ct today but can’t understand most of it.
Bev
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sadiesservant, hope the diarrhea goes away quickly & you tolerate the treatment well otherwise
Ohionana - oh frustrating when you get results before the weekend. Generally in the report look for the section labelled "impressions" or similar. The rest is just radiologist talk. Even drs just skim that and skip to the impressions part. Hope that helps you with it...
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I got my PET report today. It’s not good.
I was surprised to see that there are mets in my left, fourth rib. That is new. The rest is not too surprising. Everything got worse in my lung and liver. Plus new ones The word innumerable was used to describe my liver mets. U
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