How are people with liver mets doing?
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Darling Grannax my thoughts are with you today. Take a breath. Let your body cleanse from the AA meds and then relook at things. You need to have a trust with your MO. If you need to seek another opinion that is ok. And YOU are the patient, so YOU need to do what is right for YOU. We are here for you. Love ya.
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Grann, that is terrible! Don't let the doctor make you 2nd guess yourself. You know what you're doing. The eye rolls and constant arguments are not good. It might no be best to take daughter and SIL with you if they cannot be supportive with your decisions. There comes a point where the harm outweighs the benefit and I really believe that is where you were with AA. They have no idea what it feels like. Do they not realize that we will tolerate a heck of a lot for a drug if it's beneficial?
I am on abraxane with no steroids. The only premeds they give me are 2 Zofran pills. I thought the whole point of abraxane was no allergic reactions as opposed to taxol.
It's so hard sometimes to make the right decision and when the doctor and/or our people don't see things the same way it makes it even harder! I think a 2nd opinion is definitely in order, and then maybe a change in oncs depending how it goes.
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HLB, yay no steroids. I have already decided that when the time comes that my onc says I had better do a taxane again, I am going to tell her I have paid my dues with the steroids and the Benadryl, and I will insist on Abraxane with just zofran, too. “HLB's onc lets HER go without steroids..." (Said in a whiney kid voice.)
Thank you, SandiBeach. The awesome thing is that my feet do not hurt when I dance! I baby them the rest of the time.
Grannax, you have been going through a rough time. I’m picturing you soon with a new treatment and a new oncologist, and feeling much better. Don’t doubt yourself. Hug.
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Grannax, I also took Abraxane with Zofran only or with no premeds at all. I did the same with Doxil. I did do Benadryl and/or steroids the first dose of each to make sure all was okay and then ditched them. I had severe anaphylaxis within minutes of starting Taxol but had no problems with Taxotere or Abraxane.
I received my PET results. Some minor liver progression, which is disappointing. I don’t know if the Halaven never worked, stopped working or it is just that I had 7 weeks off after I stopped Doxil waiting for trial during which time my liver mets grew a lot. Good thing I have the trial finally lined up although I have two extra weeks off after my 2-week Halaven recovery period. Breaks make me uneasy. Today was a rough day for a few reasons. Sometimes I question whether I an an idiot for being so hopeful.
Has anyone heard from Kaption? I have been thinking about her lately.
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Awww JFL I would be sad, too. Here you are encouraging me and you're having a rough time yourself. You are DEFINITELY not an idiot. I'm glad you're in the trial.
Breaks bring mixed emotions. That's a fact. I'm on one, too. By the time I start X I will have been on ineffective treatment for five months. I'm petrified of what my PET will look like in April. Knowing MO she will probably interpret results and say I didn't stay on AA long enough.. Grrrr When in fact it will be that I have not been on X long enough. I'm going to pus for PET to be in May or June.
Shetland we have had so many similar treatments and you are ahead of me. You're one of my examples. What new treatment do you think I should be on? I'm feeling comfortable with X as soon as I start it. Not comfortable changing MO, sort of scared she'll put me on something different. I really want to give X a try first.
HLB. Thank you for your empathy. Yes I think I will talk to my daughter about not going next time. She sometimes in nerves me when she's there. It's not a big deal appointment next time anyway. No results to discuss, just evaluation of first two weeks on X.
Candy that's exactly my plan. Get all AA out of my system, it affected me so badly in so many ways. I know I'm not coo coo because so many of you had AA nightmare too. My opinions are validated by all of you.
I'm deciding not to decide until I get back from NYC. I'm even going to try to forget about her till then. No matter what I will not take steroids with Abraxane. Mind made up on that issue. Been there done that.
Here's to NYC and Phantom and runway and interviews and feeling beautiful. 💞
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Grannax- Enjoy the runway! Can't wait to see the dress. I think you are wise to try to forget all the noise for a little while and revel in your NYC adventure.
I stopped taking DH to my MO appointments- I was getting annoyed with him in them- then realized his joking around or taking the MOs side had to do with his own anxiety in my situation. I take notes next to my questions and am much happier on my own at the appointments.
My primary care doctor retired and my new one was so combative (not used to patients who know a thing or two I think) and I agitated about it for months and just switched to someone new-I heard she was nice- nice has to be part of the care.
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NKB I hear you loud and clear. I tape my appointment anyway. My MO is combative about patients who know a thing or two, too. She's told me point blank she doesn't like patients to read their labs or path report. In my 26 years I've never had one like this.. in this visit she said Oh, you like to read stats. No I don't. Oh, blogs. No, I dont. I read on BCO and I have a lot of friends, people, not stats. To which she says I'm not going to argue with you. Mouth hanging open, I was speechless.
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Grannax, seems like a red flag that your MO doesn't like patients to read their scans or pathology reports. Strange. I used to have an MO that didn't like to be questioned. I think it stems from insecurity and worry about what the patient thinks about them.
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crosspost with Gemzar thread
interesting . My WBCs were low, as expected, so you know how you have to go back to get your nuelasta shot the next day? Well they gave me a little plastic "patch" that kinda looks like a small digital toy and stuck with tape to my arm. It inserted a needle and small cathiter under the skin. The needle retracts and the cath stays in. In 24 hours it will go "off" As in KABOOM! And the medicine will start a slow 45 minute drip into my skin. I can then remove the plastic pod and viola!
Do y'all do that? It's been about 7-8 years since I have had nuelasta , so this is news to me .
Sunset
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Sunset, I've seen commercials for that neulasta device. Really nice to skip that trip in to the office just for a shot. I had neulasta 13 years ago and it was not available then.
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Hi Sunset, I used the Neulasta patch a few times last year. It IS bizarre, but always went well! I always had them put mine on my stomach. Sometimes, when it would start ticking, one of my dogs or cats would be laying next to me on the couch and they would look so surprised!!!
Take Claritin today (I normally started a day before) and for a few days afterwards. It is supposed to lessen the chance of a reaction (bone pain) due to the histamines that will be released with the production of WBC. I did this and never had any problems. My MO recommended it and many people on BCO have used it for this, too!
Best,
Katty
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Grann you seem in much better spirits which is great! The more I read about your MO the more I think a change is in order.
It's so hard with this disease to decide the right move sometimes, and our family can make it so much harder when they think we should do something different. Of course they are worried and want the best for us but the pressure can lead to guilt and sometimes even a meltdown. For me it's my parents. I can't even comprehend having a child dealing with this. I'm sure it's worse for them than it is me. A few weeks ago my dad wanted me to do Budwig. He got all the supplies and was sure it was going to help. I tried it and I CAN NOT eat it!! Like eating thick glue. The kind my mom used to make with flour and water when we didn't have any. And the taste staying in your mouth like peanut butter. I make a face just thinking about it lol. He was so disappointed. And of course I felt terrible.
It's frustrating about the steroids because it's not necessary. I hate them too. I need 3 Ativan just to calm my roid rage and it make me eat like a lumberjack.
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I'm going to Aubrieland today. That's anywhere my granddaughter is, especially when she is performing. She is my joy. Today it's an eight minute competition that's an hour's drive from me. She's in 6th grade and is competing DI. Discovery Imagination, I think. Her group has to solve a problem. This one is something about pet rescue. I'll find out more later.
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Grannax, aren't Grands a joy? Believe or not, we four grandparents + *the kids* (son and DIL) are taking the grandson, who is a vehicle freak, to a Monster Truck Jam tonight at NRG Stadium. Should be an ear-splitting hoot! Grand will have noise cancelling headphones on! Have a great time today at Aubrie's event, so glad you are up to going!
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Katfuller15,
Hope you are doing well. Just curious if your MO has figured out the next step. Has MO considered CDK7 inhibitors?
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Hi Bornfighter, I just started Halaven/lyand we are trying to get Keytruda approved for me. I have been on Ibrance/fulverstrant. Worked very well for 13-14 months. I have the BRCA2 mututation, ESR1, and the microsallities ( which that one could possibly get me approved via compassionate use by drug company).
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Thank you JFL for your reply. You are right Z is always upbeat and hopeful and her posts are really missed. I hope she is enjoying her private time with her family. Hope you are doing well also and keeping the beast at bay. I miss all the ladies on this board , theyare special and unique and each oone of them is a hero. Hugs.
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In 2015, when I was diagnosed with a Stage IV recurrence after twelve quiet years since Stage1B in 2003, I set one firm goal.
I reached that goal today, and am CELEBRATING my milestone 20th wedding anniversary!
Hubby and I have known each other since 1978 when we were in our mid-20ies, but due to trials, tribulations, and life in general, we didn't get married until we were well up in our 40ies, and darn it, I want as many years together as we can get!!!
CELEBRATE! CELEBRATE! DANCE TO THE MUSIC!
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kattysmith— Congratulations on your milestone HAPPY 20th wedding anniversary!
Not too many people can claim such an accomplishment!
Best wishes to you and your husband for continued love and happiness!
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Love the goal you set and that you reached. It's time to party🎆🎈💕👏🎤💘 Kattysmith
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Kattysmith...Love seeing happy news like this!!! Happy Anniversary ❤️
PB
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mioamix. You live in NYC, right? Tell me about the weather for this weekend. I'm packing my bag for my trip. I leave early Friday. You can come watch or visit me. I'll be staying at the Watson Hotel Friday night and Saturday night. . Im a Survivor Model for SMGlobal Catwalk. Representing Say Yes to. Hope, Surviving in Fashion. Hope I get to see you. Vicki
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Hi Vicky..it will be in the mid 30s on sat and Sunday with 40% chances of snow on Sunday...it will drop further at night, so i suggest you pack your warmest coat, hat and scarf, and think in terms of lawyers.
Unfortunately I will be in the Berkshires this weekend, otherwise I would have loved to have meet you and your family...have fun at the show and enjoy everything this greatcity has to offer....
Best of luck with x....I don't understand,however, why you are getting abraxene with it.
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No she says abraxane when I fail X. If I had wanted to I'm sure she would have given me A. I've heard about ladies doing well on X for years. I wanted to give it a try before going to Abraxane.
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Have a wonderful time Grann!
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Grannax- Have a WONDERFUL time this weekend. And we expect pics!!!!!
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Grannax, have another fabulous fashion show and enjoy NYC! I live in Florida now but used to live in NYC. If I were there I would have loved to meet up!
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Have a wonderful time at the show and in NYC Grannax
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Grannax, safe travels and have a wonderful time!!!
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Apparently a new approach to liver cancer treatment could reduce the side effects!
New chemo drug keeps platinum nanoparticles on target for liver cancer
https://newatlas.com/platinum-nanoparticles-liver-cancer/58491/The words Trump and intelligence should never be used in the same sentence without a negative qualifier. Sent from iPad.
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