How are people with liver mets doing?
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JFL- so happy for you👏👏👏
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JFL- so happy for you👏👏👏
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JFL- so happy for you👏👏👏j
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Daniel, I didn't start testosterone. My MO was open to testosterone teamed with 2nd Y90 and testosterone and tamoxifen but was a bit uneasy adding it to Navelbine and tamoxifen. I think it is the unknown factor. Not sure if testosterone has been used much if at all with chemo.
Nkb, the high blood sugar issues with Piqray are a bit scary. As much as I failed Afinitor for the 3 months I was on it, although it didn't reverse my progression it did slow it down. That leads me to believe there was some activity there, it just wasn't enough. I would not be surprised if a 3-drug cocktail with Afinitor works when Afinitor + hormone therapy does not. Lowering the dose of Afinitor seems like a good idea for the sake of tolerability.
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Today I stand up to lowered antiemetic. My messages on my portal only got me nothing. The pharmacist said NO. Now, per instructions from my MO nurse, I refuse TX when I get there. Then the infusion nurse will call my nurse and she will take care of it. It's a crazy world we patients live in. This will be my first time to self advocate in such a bold manner.💞
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Grannax,
You go, girl. You know your body better than these people do, and if the extra drugs make you feel badly, then you should stand up for yourself. My theory on this is that if they don't give you the pre-meds, they probably have to watch you more closely for adverse reactions during the infusion. So it's really easier for them to give you the pre-meds. But you should insist on what you know if right for you. Good luck!
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Grannax- I totally agree with you. We MUST advocate for ourselves. BevJen has a good theory about the nurse having to watch the patients closer if they don't take the premeds. YOU MUST DO WHAT IS RIGHT FOR YOU. In your pocket today.
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my advocating for myself was used by the nursing staff at my infusion center to change a certain protocol. Now others don’t have to wait between treatments of HP and they actually give them at the same time( not my doing).
Always speak up. I only get. A Pepcid and a small dose of steroid the day of.
Stay strong
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leftfoot. What is your dose of which steroid? Mine is Dexamethasone and was reduced to 5mg (from 10mg. Only after I begged.
Another theory is that it takes more time out of their schedule and mine. Therefore, it backs up and then they are behind all day. But, I'm going to do it. My friend who is going with me won't mind and will stand up with me.
Yes, my son, who is a doctor, is backing me up 100%. I wish he could be there w me but he's working.
Thanks, for your encouragement, ladies.
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Grannax, good for you to have a wonderful support! Would it be more effective if you spoke with a NP or the MO that you don't want pre-meds? I was advised by the chemo nurse that if I needed anything changed with my pre-meds, I should call or send the message via patient portal to the MO directly.
The chemo nurses or the pharmacist are not allowed to change anything without prior approval of the MO. So last week, when I saw my MO, I told her about the effect of steroid on me (steroid crash, water retention, etc) and she immediately lowered it from 8 mg to 2 mg. Benedryl was lowered from 50 mg to 25 mg. So now I get Aloxi (for nausea), benedryl, dexamethasone and pepcid as pre-meds. Once these orders were in the system, the chemo nurse followed this protocol.
Wondering if you have enough time to reach out to your MO or a NP via patient portal PRIOR to your next treatment day? This may help speed up things for you on the day of the treatment - just a suggestion.
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👏 for great scan JFL! Always good news to hear here. So hard to keep up with all the post on here. Love to read all the helpful ideas shared.
Grannax2- you inspire me!! 🥰 When I did taxol pre-meds I directly asked my MO to reduce dexamethasone dose and exchange IV benerdyl for oral Claritin 20 minutes before taxol infusion. That was so much better for me. I stayed awake and was functional all day. Benadryl wiped me out 2 seconds after they started the infusion and I felt terrible all day. - I don't always read through all the messages so you may already do this.
Absolutely need to be our own advocates💪🏼
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grammar- I am on 4 my of decades on infusion day. My MO won’t allow me to not have it. This is problematic sometimes in terms of sleeping day of treatment but much better than when I had to oremedicatevwith it the day before, had Benadryl and fed the day of.
Good luc
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I am cross posting here and the Ibrance thread.
Yesterday was my first 3 month PET scan. My doctor just sent me this:
Good news - the report shows the areas in the liver are smaller and there is less brightness which is a sign of a good response to treatment - that means the treatment is working.
The area in the hip is resolved!
Attached is the report.I am sobbing tears of Joy right now. I am so grateful to the Lord for His unfailing mercy!!!!
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NicoleRod, that is outstanding👏 Wishing you a very long run with ibrance🙏 I’ve been on it sufor over a year now. So grateful!
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Thank you for your well wishes. Praying for a long run as well.
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Nicole- Yes, Thank you Lord. I hope you have a long run on Ibrance.
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yay Nicole.
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Sending shouts of joy to Nicole and JFL for good news scans. May you both enjoy a good long run on your respective treatments. Hugs ~ JL
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Thank you ladies I feel like you are all my dearest friends !!!
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NicoleRod, so happy to hear the great news!!! I hope Ibrance works for many years.
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NicoleRod! Great news and you are an inspiration for those just starting on the Ibrance journey.
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Wow Nicole, wow JFL, you beautiful souls are wonderful!:)
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Nicole. Happy dance for your good news.
I did it. Boy was it a hassle and took forever. Yes, I started early Monday morning with numerous messages back and forth on my portal. Did not help. The Pharmacist said flat out NO. She is not a team player. She is not the boss of me, she and my MO are supposed to work together. Finally, I talked to my MO nurse. She's awesome. She told me to refuse TX. Long story short, I didn't get exactly what I was requesting because the antiemetics are given in a drip and do not come in smaller sizes. I had to make the split second decision to go with all or nothing. I chose nothing. Although I still said OK to 5 mg of Dexamethasone.
Happy I don't have any nausea or vomiting yet. Am I going to have constipation this time NOPE, already know that. Lol. It's a win, win so far.💞
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Grannax2, can you get prescribed antinausea in pill form? I seem to remember having that option with AC.
Also, with steroid use, I read the instructions wrong and was taking half dose by accident.
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Yes, I have it filled and ready but no nausea or vomiting. Eating like a horse. I know it comes in tablets. For now I don't think I will have any trouble getting it reduced again from 5mg to maybe 2 mg in the IV. It depends on how I do. So far is awesome. I'm thrilled.
It's all good. I'm expecting it to continue to be good. My next infusion is August 20. I get two weeks off. There will be no issues to discuss. That's nice. 💞
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I have a question... about Ibrance but I wanted to ask it here because its more about people that Ibrance stopped working for so I didn't know if those people would still frequent the Ibrance thread so I will cross post over there for that reason.
For those that Ibrance and Femera stopped working in less than a year or less than 6 months, how was your response after the first 3 months was it a big response, or was it slight or not at all and you gave it more time?
Thanks,
Nicole
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Grannax, glad you muscled yourself out of the anti-nausea meds that you did not want. Strange about the pharmacist refusing to remove the anti-nausea meds. The pharmacist is authorized to FILL chemo prescriptions, not to actually write them. Not the pharmacist's decision.
Nicole, I did 15 months on my first line of Ibrance/Faslodex/Aromasin and had a strong response after 3 months. Actually, Ibrance was only added during month 8, as it wasn't approved with Faslodex prior to then. I believe I would have made it longer on my first treatment line had I been on Ibrance the entire 15 months. Hopefully some will chime in who are in the group you are looking for - less than a year or less than 6 months.
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Hello, I just want to ask a question.
Lately I've been diagnosed with liver mets, but they were really small (Largest one being 7mm). Last scan showed a milimetric growth from 7mm to 9 mm in 1,5 months and my MO wants to change the chemo regimen. I'm having 3 weekly dosages of Kadycla and had no issues with it. No side effects, even my hair grew and at my shoulders now.. (Yey!!).
Now I'm concerned. I know that it is right to change the chemo drugs, but I've been feeling alright lately and scared of this new journey. When I asked my MO which drug will I be getting, he told me that he doesn't decided yet, but it can have some side effects. I've had AC and Taxol before and I know its side effects.
So do you have chemo because of your liver mets, which drug are you on and what are the side effects?
Lots of Love
Ece
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Thanks JFL ! I am glad you had a such a long run with Ibrance!
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I've been in an immunotherapy trial since December and have had a fantastic response (44% decrease in target tumors), until now. Yesterday was my last day in the trial because of an increase in size and number of my liver tumors. Progression showed up in my June scans, but they were hoping it was psuedo-progression, so I was allowed to stay in the trial until my scan this week confirmed more progression. My two largest hepatic tumors increased from 2.2 x 2.4 cm to 3.3 x 3.4 cm and 2.5 x 1.8 cm to 3.2 x 2.3 cm. and I have several smaller diffuse (correct term?) lesions. Other non-liver nodes have minute progression or remain stable.
So I'm at a crossroads. My gut tells me to get a referral for an IR doctor at MD Anderson to see if I'm a viable candidate for Y9, because unless I do something that is proven in many cases to slow progression in the liver (I've been following the Y90 etc thread for months), I'll be looking at liver failure in *several* months. My liver values are all good as is the rest of my bloodwork and general health. In conjunction with or after both lobes are done, I could try another convention systemic treatment to keep the hounds at bay.
BUT, my study doctor offered another Phase 1 immunotherapy trial which in my panic I consented to, but can withdraw at any point. Dr. J doesn't know why my initial trial started failing after months of success. I am the only patient in his trial who had such a good response. He postulates that my tumors may have become *cold* and therefore unrecognizable to the immunotherapy drugs. This trial would stimulate inflammation (making them *hot) in my largest tumors which would then theoretically spread to other tumors making them more succeptable to the immotherapy. Here's the short form: Preclinical Characterization of BMS-986299, a First-in-Class NLRP3 Agonist with Potent Antitumor Activity, Alone and in Combination with Checkpoint Blockade
It's a pretty hairy, invasive regime for my liver. Once a week for 5 weeks, I would have the study drug injected directly into my liver tumor. It would be treated like a liver biopsy with conscious sedation and a SIX hour recovery with possible overnght stay in case of fever. He would scan me after a month and at that point, if my tumors looked receptive, he would add Nivolumab (which I've been on) and Ipilimumab (which I know nothing about yet. I'll be up there a minimum of two-three days per week for 5 weeks and unless I bail out before, I'll start the first week in September.
I always have questions AFTER my appointments, because it takes a while for things to percolate with me. If you have any suggestions of questions to ask or any thoughts on what direction you think I should go, (Y90 + conventional or trial ) please chime in! I feel like things are happening too fast and I want to make the most informed decision I can. And, it just figures, my former MO prior to the clinical trial is leaving MDA early next week, so I won't have him to bounce these ideas off of.
I don't rattle easily, but I am well and truly rattled right now.
I'm crossposting on Y90 thread and my clinical trial thread.
Thanks to one and all,
Katty
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