IBC lounge: roll call, support and just a good place to hang out
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Thank you 😀
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Thank you Lori I just have three more Taxol to go. Keeping my fingers crossed and final chemo on October 18. Thank you so much for always being there
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Lori, Gezmar has been going okay but we had to postpone last week's session because of low red blood cells. It is supposed to happen on the seventeenth now instead.
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Glad to hear that Gemzar is going well Amarantha, but sorry about your low blood counts. Thankfully that's one problem I haven't had yet, somehow my counts have managed to stay rock solid through everything so far.
Are you seeing any results? When is your next scan? More importantly, how are you feeling? I know you weren't too well last time we heard from you, and I really hope you are feeling much better these days.
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My mother is visiting for my birthday, and I'm managing by taking morphine extra doses to manage my pain enough to be able to visiting with her. I cannot do things like go for a walk though which is too bad.
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Happy Birthday amarantha!
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amarantha, all the best for your mother's visit and have a Happy Birthday.
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happy Birthday Amar
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Happy Birthday Amarantha!
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Amarantha: happy birthday!! How wonderful to have your mom with you on this special day;-)0
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Happy birthday, Amarantha! Have a lovely visit with your momma!
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Amarantha Happy Birthday, you are such a strong person, hugs enjoy your visit with your mother.
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Hi,
My name is Sarah & I am a 41yr old mother/grandmother/electrician/academic from Australia.
I was diagnosed with IBC DeNovo in November last year.
Currently finishing radiation and not yet on any drugs but am NED.
My hobbies are reading, gardening, writing, stoic philosophy and researching family histories.
I am a much better at listening than talking.
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Welcome Sarah. You must be pleased to be nearly through your initial treatment. There's lots of experienced people to help you with any questions you might have.
What drugs to they have planned for your next phase? Where are you being treated?
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Hi Traveltext,
I am up in Townsville. Definitely glad to be almost done with treatment. I will be starting Ibrance & Letrozole next month. The only question I have is how to get out of going back to work 😉.
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Hey Lori just a question. One of my liver enzymes ALT came high while on Taxol. Just wanted to know if it’s common Taxol effect. They want to do some more blood work tomorrow to check me for hepatitis and also will lower my Taxol dose.
Regards
Flora
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I thought I saw someone here mention they lived in Silicon Valley. If so, can you please pm me?
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Flora it's not common, but taxol can affect your liver because the chemo is metabolized by your liver. How high was your ALT? Was your bilirubin normal or was it elevated too? They will check to make sure you don't have any pre-existing liver disease that is being exacerbated by the chemo. Dose reduction makes sense.
Did you have any staging scans done? If you don't have any liver disease and the dose reduction doesn't bring the number down, it could also be a sign of liver mets, although my ALT and bilirubin were always within normal range even though I had liver mets. But we keep an eye on those two numbers for an early sign that they may be growing.
If your ALT is just slightly elevated, your bilirubin is fine and you don't have any symptoms like jaundice, I wouldn't sweat it too much unless it continues to rise.
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Hi Lori it's my ALt 128 and bilirubin is normal and ALp is 157. I had staging scans done and they were all fine. Thank you so much and let see they will tests for hepatitis tomorrow
Also I had a lot of acetaminophen with codeine. MO thinks that can also be the reaso
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MissJane78: Sarah, welcome! Glad that you found us. What an interesting introduction, 41 yrs. old mother/grandmother/electrician/academic!
blue22: will PM you.
Flo80: during my Taxol+Carbo weekly chemo period, every time I took more than 8 Tylenol that week, the liver number jumped up. Did you take more Advil like drugs? A lot of drugs affect liver or kidneys, on top of chemo, they do add up. Hope your tests are OK.0 -
yes I did take Advil anc acetaminophen. I believe you are right. They will reduce my Taxol tomorrow and I will try not to take any painkiller thus week. Will be tough but want my enzymes yo shoot to normal. Thank you so much
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Thank you so much for the birthday wishes gals. It was a nice to surprise to find them here, I didn't expect them here. I hope everyone is managing to survive. I had a lovely visit with my mother although it was too short. My doctors have encouraged me to take more morphine. I am certainly more mobile when I do. But ...isn't it bad ?
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Amarantha, the only bad thing about taking enough morphine to allow pain-free (or at least pain-controlled) mobility is that it leads to constipation. Take the morphine and feel better when you're up and around. Add some Mira-lax, Metamucil, extra fiber, prunes, whatever, to keep things moving along. Just my humble opinion.
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amarantha my doctor always had to push me to take more morphine too, but once I realized how much better I felt by listening to him, I learned to trust him when he told me take more. Please do take SB's advice because that is the one tough side effect from morphine. My dad landed himself in the ER last week after not properly managing an increased dose, causing the situation to get so bad that he passed out! Senokot S is the only one that worked for me, but you probably have different brands in your country.
I'm just sitting here in limbo for waiting for my next treatment line to be approved. I hate being completely off treatment in the meantime. Not sure if I mentioned here that my echocardiogram was still good but my PET showed significant progression throughout my lymphatics, from both supraclaviculars, all through my chest and down into my abdomen, so I'm anxious to get started on a new line even though I'm not really looking forward to it. I still feel okay though, and I guess I'm in good shape for more chemo.
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Dear Lori, what treatment do they suggest? Is it TDM-1 or some sort of combination? Is progression only in lymphatic system? I am very sorry for all what happens but am sure effective treatment will knock it back. Please hold on, please get that treatment as soon as possible. Sincerest hugs, Saulius
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Saulius he wanted to try another taxane or eribulin (Halaven), which would be in addition to Herceptin and Perjeta. I asked about moving on to TDM-1 because it's not as harsh (at least I wouldn't lose my hair just in time for Christmas again), and I'm getting tired of the "Herceptin plus xxx" routine that doesn't seem to be doing any good (although TDM-1 is Herceptin plus a chemo haha). The last taxane I tried didn't do anything at all so I do not want to try another taxane right now. I asked him if Herceptin was pointless since I keep having progression, but he feels that it is slowing down progression, that it would spread much faster if I wasn't on Herceptin. TDM-1 is the standard second line of treatment for HER2+, and he agreed to see if we could get it approved. But now I'm reading that there are very few chemo drugs that penetrate the lymph nodes. I'm not finding much research about mets in distant nodes with breast cancer, only axillary nodes, and he didn't seem well-prepared for our meeting. I'm frustrated because it shouldn't take this long to decide what treatment I'll be trying, and there's no reason why my insurance should be delaying approval for any of it. I just want to get this squared away and move forward.
My organs are still clear, liver mets are resolved and the tumors we fried earlier this year shrank and the SUV is minimal, so that's all good. Now I just need to get my lymph nodes cleared up before they decide to start spreading mets to my organs.
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Lori I pray you feel better soon and everything gets okay.
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Here's my Pinktober rant for this year:
http://malebc.org/wp-content/uploads/2019/09/Gende...
Each year I think some progress is being made, but it's a slow process.
Another thing I understand, is that many people here are doing it much tougher than me, and I really wish them well.
I lost a good friend to this disease recently and, as he said in his last days, "fuck cancer".
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I'm curious - how many people regularly read this forum? And of those of you that do - how many of you are in active treatment? Or are you NED and pop in from time to time to give those of us in treatment the hope we need?
Since the title of this thread included "roll call" does anyone mind chiming in?
How are you doing and where are you in treatment?
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Hi blue22, you can often find the answers to your questions in our signatures. I’d encourage you to put your data in so that we know where you’re up to.
Me, I’ve been here, and on the previous iteration of this topic, for five years. I’m NED, but I have so many cyber pals here that I like to support them, give encouragement, share info,etc. I’m the only man I know with this type of bc
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