How are people with liver mets doing?
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Gumdoctor I'm so sorry to read about the low WBC precluding treatment today....
What can be done about that? I haven't crossed that bridge yet, but I'm wondering if there's some sort of medication that can help boost that count...I hope things turn around for you soon on this trial.
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Bummer Gumdoctor. Yes, there is an injection for it Frisky but I don't remember the name. The one they offered me, I would have had to come back four days in a row. Or wait a week. I chose wait a week. Also, I wonder if the trial has certain other guidelines for that.
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I was on filgrastim (Zarxio brand name also known as Neupogen) with Abraxane for 3 days after each chemo. 12 times x 3 days each time.
They are new to this study and they have to talk with the manufacturer b4 we do filgrastim again. The research coordinator told me there is a protocol allowing it but they are new to it and we have to see what the manufacturer says first...
I am very disappointed in my tx team over this today. They are acting like they never expected this. But neutropenia is the first side effect listed with IMMU - 132. If I were not so self-educated on it, I would not know the difference.
Just venting. Thank you for listening/reading...
Gumdoctor
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oh man Gumdoctor that stinks!!! Hoping those numbers come up soon!!
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Gumdoc,
I was given the neulasta patch during one chemo (gem/carb) because my counts ran too low, but maybe it's not allowed on your trial?
I'm so sorry for the frustration that comes with lack of communication and the delay it's caused in your treatment! Vent away!
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sorry gumdoctor but you know low WBC is dangerous. I understand being ready and being turned away - happened to me today after waiting an hour I was turned away for my Nupagen shot due to insurance wanting a different brand name that my clinic does not stock. Grrr
Candy - being realistic is good to keep yourself grounded but as you said, only God knows our days and I remain hopeful that I will live a long life. My dad is 81 and strong, his dad was in his 90’s before he passed I am 58
Ladies- No confusion with doxil and the red devil. my MO told me some people do lose their hair with doxil. I am using the Penguin cold caps as a precaution. My friend was on doxil for a year and her hair thinned and changed and she is not happy with post doxil hair. Since my hubby agreed to pay and be my cold cap technician I will continue to use it at least it is only once every 4 weeks
Blessings to all this Christmas season
Dee
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hugs gumdoctor. How very disappointing.
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Gumdoctor, I understand your frustration and stress. To be in a trial with so much positivity surrounding it, then not getting the treatment the day it’s due would be a kick in the gut. I guess the protocols have to be researched by your team, but sorry it has to be at your expense.
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Thank you all for your encouragement. Struggling tonight. Talked with husband about some funeral details and his looking for my life partner replacement. Contacted my cousin to purchase 2 cemetary plots he has in reserve.
Time to get some things in place.
Gumdoctor
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Gumdoctor, I am so sorry to hear about the trial frustrations. When I was in a trial, I ended up disappointed due to various delays that I thought could have been better managed and pre-empted by the trial team. I dealt with so many delays for various reasons. I was surprised at the lack of general knowledge the trial team had about these types of matters. They seemed very reactive and didn't think about any of the common, recurring issues in advance. Giving you a hug from here. Tough conversation you had tonight with your DH. I admire your strength in being able to do that. None of us should be in this position.
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gumdoctor- I hope you were able to rest.
Today marks my second day at u of c for my trial. I hope that I am able to get the treatment today. Had a brain mri yesterday. for the first time in over 5 years I feel totally out of control. Love that we have trials to help us, but really dislike feeling like a mouse in an experiment. Hard to lose all the control I had and be subject to whatever they need. Different experience.
May next week work and the treatment be what you need to keep this awful disease at bay.
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I haven't been on a trial yet. I know I would be so frustrated. We have our lives on the line and have to put up with the unnecessary stress from lack of organization and knowledge?!?! Not reassuring at all.
I've done quite a few of the things that you are doing Gumdoctor. Updated my will, got all the powers of attorney, my son is on my bank account and I already have my gravesite. I've had it for awhile because my husband died nine years ago. It was sobering to get it all in place but now I feel like I've done the right thing for my kids. I'm all about making things easier for them. There's always more to do, though. And sometimes I don't feel like doing it.
LFF I feel out of control all the time. Giving up control is not easy for me. Every time a TX fails, I'm blindsided. Then I start wondering if all will fail. I do feel pretty good about the y90 working. The recent information I've read about the statistics is amazingly good. But, it's all talking about first y90s not second. Yttrium is strong stuff. Thursday is my left lobe y90.
Keep writing ladies.💞
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Gumdoctor- Hugging you right now. No words.
Grannax- Prayers for Thursday's Y90 treatment.
I am a control freak. Always have been. Funny, ironic, that I got this cancer where truthfully I have no control. Right now I am stable on I/L treatment, but I worry about when things progress and I lose that sense of control. I think I want to be in a trial someday, but maybe not. Being in their hands and losing that control, I don't know if I would be a good lab rat. Sigh...
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Gumdoctor, holding you in my thoughts. Nobody should have to talk to their partner about re-partnering, but here we are. And I can't think of a more loving thing to do.
Grannax, adding my prayers to Candy's for Thursday's treatment.
Hugs to all ~ JL
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Candy, Jaylea Thanks I need them. I'm confident but still a little nervous. Mostly, I volunteered to do too much Christmas stuff. I have to make today productive or I'm at risk of not getting everything on my list done. What was I thinking? 💞
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Grannax,
Just posted on the other page -- it will get done or, if it doesn't, well it doesn't. Thinking good thoughts for you.
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I am on CMF every three weeks and finished the third cycle last week. My tumor markers are steadily increasing since three weeks. Any thoughts on this? Could it be a tumor flare?
I am extremely exhausted with each treatment, but I have to keep going since I am running out of options. I have only 2 things left - Halaven and Piqray , since I have PIC-3 mutation. But my MO thinks CMF would work in regressing my liver tumors . I am not so sure now.
It's a crazy ride !
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leftfootforward , hope this clinical trial works for you. I was on ca linical trial 10 years ago, and I know how it feels like a mouse in an experiment. But you are helping all the others by participating in this trial.
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Grannax praying for a great outcome for you today! you're right I submit some stuff ain't getting done.
Gumdoctor you're brave and practical. I hope your trial begins soon. You're so ready. I did my will when I became stage IV. Had the talk with my DH about moving on and he said that he would but I really don't know how that will be because of our ages and amount of time married. My DD was angry that I had that conversation with him and said she can't imagine him doing that. LOL . I've already accepted he's healthy and alive and has a future to look forward to I won't see whatever happens - reality.
Tanya
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Hi S3K5, CMF was not for me. I wasn't on it for very long and usually it takes about 3-4 month for the drugs to work. However, my CA 27/28 markers were doubling and Foundation One showed a mutation from the liver biopsy. I started Piqray last week, so far the side effects haven't been to bad. Last week my oncologist wanted to add CMF to Piqray and Letrozole and I said no. I didn't need three drugs and the pharmacist talked him out of it also. It is a crazy ride 💕
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Good Morning All,
Santa brought me an early holiday present! After 3 Cycles / 9 weeks on Xeloda, my scan yesterday showed "significant shrinkage" of my liver tumors and my TMs dropped dramatically!
My doctor, a 40-year practitioner, was clearly surprised by the great response, and he said that the radiologist was amazed at the difference between this scan and my last!!!
He even gave me a little hug as we parted.
My liver values were all good except for my bilirubin, which has risen, but I'll have another blood test in 3 weeks to see how that's going!
My holidays are going to be a LOT happier now!
Happy Holidays to all!
Katty
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Kattysmith that is wonderful news & a great Christmas gift.
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Kattysmith,
Woo hoo! What a terrific report! You deserve it after your clinical trial. Wonderful news.
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Katty- WOOHOO !!!!!! Thank the Lord. Time to celebrate.
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Katty that’s amazing news! I’m very happy for you....
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yay Kathy
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wonderful, Katty, I think the immunotherapy you had for so long is causing a much more robust response to the Xeloda treatment
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Cure-ious, that hadn't even occurred to me! You may well be right!
OR it could be because I wore my new lucky Fiona the hippo socks with a bluebird of happiness on her back!
Thanks, everyone!
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It must have been the socks. LOL. You go girl, rock those socks, Katty.💞
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Update: Last y90 in the books! It seems to be easier this time. I think the right lobe is so much bigger and the left smaller that they use less yttrium therefore less SE. I hope so, I have Christmas party number one this evening.💞
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