How are people with liver mets doing?
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BevJen- Responding to your response to me--- Good point about onc offering a trial before a chemo option. I am not there yet. I am on first line therapy. My MO did allude to PARP being my next option, but I will have to keep clinical trials in my line of thought for the future, maybe. We don't do them in my area, so I wonder if my MO has them in her thinking for my future. Or will she advise on the meds she has experience with--chemo.
Nicole- Don't have any advise for you. But you are in my thoughts and prayers as you move forward.
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Nicole, I would do Doxil if it were me, only for the issue you mentioned about the wedding (preserving hair). However, you can do cold caps and if you do Abraxane, I would recommend weekly (2 or 3 weeks on/1 off). I did Abraxane every 3 weeks, which is a much higher dose, and had a lot more hair loss and neuropathy than those who were doing it weekly at the same time. I lasted longer on Doxil (9 months) than Abraxane (7 months) although I took Abraxane first, so I wouldn’t say that Abraxane is necessarily more effective. As in everything else, everyone responds differently and there is no way to know. I can’t recall for sure but don’t believe you did Adriamycin when you were early stage. If not, you have never been exposed to the drug in Doxil and have an even better chance at responding than most who do Doxil after already having done Adriamycin/doxorubicin early stage. My MO wouldn’t let me do Doxil first given that it is more considered standard of care to have a taxane as the first IV chemo drug for MBC. I asked and was denied. Of course, no one wants to lose their hair, but if you must, I have no doubt you will find a beautiful wig and no one would know the difference. I did cold caps on Abraxane and managed for 6 months although I had lost a lot of hair. Toppik works wonders. At 6 month point it started to get too, too sparse and I started wearing a wig and wore it for 1.5 years until this summer. It was beautiful and no one knew at work or anywhere else.
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JFL thanks...actually it wouldn't matter as far as hair even if I start with Doxil bc if it doesn't work the wedding is not until November...(well our sons wedding) my nephews is in May and we will know after 3 months if Doxil is working or not. You are correct I have never had any chemo..till Xeloda right now. When I was stage 0 I had lumpectomy and radiation only.
My MO, if I was to say "do whatever you want"...she would most definitely go with the Nabpacitaxol first...but she said last night that if I want to start with Doxil she is ok with that. I sent her a bunch of trials I am eligible for hoping she will see a good one.
Thank you very much for giving me your opinion about which you would choose to start with. I really appreciate it.
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Grannax - It's a low dose Taxotere that follows the Xeloda schedule so my off weeks are the same. No doubt it's a TOUGH combo but my liver counts have dropped to normal range and TM's have dropped as well.
Hope you are doing well!
Lee
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Hi everyone-after many weeks of trying to find a new regimen after failing eribulin we settled on Doxil (we call is Caelyx) plus Herceptin. (have earlier failed taxol, NAB-Pac, vinorelbine/navelbine, xeloda/capecetabine, and kadcyla/TDM1. )
I'm considering buying the Foundation One gene tests -- anyone with thoughts on that? its about two thousand dollars but my USA doctor friends think it will make it easier to identify me for new clinical trials for drugs based on specific gene mutations.
Meanwhile not looking forward to hand-foot syndrome again but hoping the Doxil isnt as bad as the Xeloda which was a nightmare. When I had "doxil's evil cousin" when I was early stage (don't we all remember the red devil?) I landed in the hospital for two weeks with a zero white blood cell count. But it sounds like those of you who have been on Doxil haven't had such a bad time. I won't miss the cold cap and the hand and foot icing on Halaven.
My easiest treatments have been the NAB-Paclitaxel, the TDM1 and the Halaven. Go figure, I guess we really do all have different body chemistries.
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Leee. I am doing well. Waiting for my next scan to see how well my second set of y90s did. It's scheduled for March 20. Oh the waiting game, I still don't like it. Meanwhile, since November I have been on Faslodex alone while I've been busy doing y90s. We're hoping it's keeping my lung and mediastinal mets stable.
Thanks for the info about X and Taxetere lower dose. X failed for me and I was on Taxotere, in 2000, it was my hardest TX. Even worse than the red devil but it was high dose. Go figure, we are all different. Good luck on your new TX and keep us posted. 💞
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grannax
I got my special PET scan set for March 10 (May have to self pay)so I will find out how y-90 and current treatment is doing just 6 weeks out. Hope we can celebrate good news together!!
Prayers that insurance will kick in. Local MO did a peer to peer review to help get it covered. Now the wait.
Dee
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does anyone else have alternating chills and sweats?
Is this a metastatic ca thing? What do you do about it? The sweats don't really bug me but the chills make me feel so bad I have to crawl into bed.0 -
It might be hormone fluctuations or from a slight fever, in either case due to various treatments.
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I do. I found CBD oil seems to help with those. I am not even sure whether it is from cancer or from treatment. Or from menopause.
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Has anyone heard from Gumdoctor? It looks like her last post was on 2/18. Concerned.
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I haven't started treatment yet
It's partly what makes me so scared atm. I feel awful and weak (low albumin, low hemoglobin, low blood pressure) and I keep having these alternating dripping heat things and then so so so cold that I can't get warm for like 30 minutes episodes. It's full body shivers and very uncomfortable. sometimes my temperature changes and there's an actual fever but sometimes body temps is normal & I just feel this.
My periods stopped in Feb 2018 after my first chemo cycle & I had some hot flashes then. They've confirmed twice since then that I'm post menopausal. Maybe I've developed mets on my adrenals or ovaries since the last CT scanthats good to know about the cbd. i was just talking to my mo about medicinal marijuana yesterday - we're not sure if it's allowed on the clinical trial she's hoping to enroll me in but it's not off the table
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also I asked my dr about ablation or cryotherapy etc for my liver mets and she said I'm not a candidate because I don't have 1 large liver tumor but rather numerous little ones. Honestly I didn't even catch how many.
that sounds bad, right? Seems like my whole liver is going to be swiss cheese, even if the treatments manage to kill off the tumors?
Right now they're looking at starting me on the 18th or 19th of march with the trial if I get in, and if not then with some other chemo therapy she'll decide on0 -
Dee. Good for you! Sorry you have to pay. Boo. Yes, mine is on the 20th but I don't know when I will get the results. I pray we will share our good news. Die liver monsters, DIE.
Moth Is your HGB low enough for a transfusion? Have you been tested for the flu? I felt like that when I had the flu in18. Are you on an AI or anti estrogen? It could still be hot flashes from menopause. Sounds horrible. I've heard there are supplements that help.
I think GD started Halaven on Monday. Ill reach out to her.💞
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Granna - thx for asking. Hemoglobin is not low enough for transfusion right now. I am supposed to get albumin infused in a couple weeks. I don't think it's flu just because it's been dragging on for a couple weeks & it started very gradually. A day here and there where I'd be unusually cold in and then nothing. Now it's several times a day. Usually viral tends to hit hard and fast and then maybe linger; bacterial tends to start slow and dragg on. And while I'm coughing they think it's from the lung mets and none of the mucous looks suspicious so nobody wants to give me antibiotics. Still. I'll keep bugging doctors about it next week. I was also working in hospitals right up to the end of January - including in a hospital with a very high population of Chinese immigrants but this is also not presenting like covid.
Dee - fingers crossed for insurance going smoothly & the best possible results.
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Moth,
Re your doc telling you that you weren't a candidate for ablation -- what about y90? As Grannax can tell you, it is a therapy for multiple mets.
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I texted with Gumdoctor. She's okay but having some issues with Halaven and blood counts, etc. She had one TX two weeks ago but this week her ANC was too low. Also, the shots she takes for low ANC have been unusually painful even though she's not had problems with pain when she took them before. So, it's exhausting.
On Monday, she will go for her second TX of Halaven.
Prince Charming is taking good care of her, especially with his cooking. She hasn't had much of an appetite, though. Praying for pain meds that will help her cope with the pain from the injections.💞
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Grannax, thanks for the update and I so hope things get easier for her.
Katty
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so I live in the epicenter of the corona virus scare. It’s absolutely crazy around here. My husband is an ER doc who works at all the hospitals where people are sick and have died. I have 4 kids and schools are closing around us. And I teach at a school. And I have to travel fir treatment to a state with case of community spread disease and a state of emergency,
I’m not hysterical or that worried but this is crazy. May everyone stay safe and healthy.0 -
leftfootforward, so sorry to hear that! We have 14 cases in Sweden but that is expected to rise since so many Swedes vacationed in the Italian alps last week. The workplaces are restricting folks from Italy, France, Iran, China, S Korea from coming back to work. But the silver lining for folks like us is that people are actually washing their hands and coughing in their elbows so regular flu cases should be down meaning fewer complications for we metsters. My teenagers hoped school would be cancelled but no such luck : )
Meanwhile doing better than expected on Doxil (Caelyx), if I rest a lot it's ok so far (day 4)
Hugs to all!/AMY
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left foot forward-Prayers for protection from the covid. It sounds stressful where you are. 😷
Grannax -My local clinic will give me the PET scan answer on the same day. I'm blessed. 🙌🏻 It's weird- I want this pet scan to light up so I will qualify for the trial
MOTH-I had bland embolization to one quadrant of my liver To cut off the blood supply to that area with hopes to kill the multiple diffuse small mets. They did that at the same time as y-90 to the other lobe. Reducing tumor burden was the goal. Maybe that is an option for you. I would ask for an interventional radiologist consult. My MO did not even suggest bland embolization but she was on board with local treatment options so she referred me.
Labs on Friday showed low WBC and low platelets. Took the filgrastin shot. Feeling ok except for awful toothache.
Just had a root canal retreated this morning. Thankful that they worked me in. Such a painful weekend.Maybe I can have a normal week 🙃
Dee
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Hi All -
I have heard from some of you - thank you for your concern.
I am ok but still very overwhelmed. Had 2nd dose of Halaven today. Dealing with severe, debilitating bone pain after each Zarxio injection...in bed all day...crying...
MO gave me a prescription for low dose oxycodone for the first time today. First time I have asked for any pain meds. It is unbearable. Will do next Zarxio (Neupogen) injection tomorrow and will take the oxycodone too. I have never been a fan of pain meds but this is a major quality of life issue.
Also dealing with Army kicking me out soon. The culture shock of leaving the military is another major life challenge, with the reduction in income and change in insurance being the most challenging.
Photo shows a little bit of my rash. This covers my entire upper body and is starting on my face and legs too. It started during the study medicine IMMU132. It is continuing to worsen on Halaven.
I truly appreciate your concern for me. I am as ok as I can be with everything going on. Please don't worry. We are not looking at liver failure yet. That's the next big thing I expect and believe it is what will take me out, sooner than later. I will keep you informed or you will hear from my sister. She will be helping my husband tie up loose ends when the end comes.
Best Wishes to All, Gumdoctor
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Gumdoctor, Thanks for letting us know how you’re doing. Im sorry that you’re suffering. I hope the pain meds are helpful. My warmest thoughts are with you and your family.
Rosie
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lots of hugs gum doctor. I really hope symptoms lesson soon.
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Thinking of you, gum doctor. I hope the doc can at least get your pain under control.
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Oh, Gumdoctor! Sending love to you. Take the pain meds for sure, no shame in that. I am a minimalist, too, but there is a time to use these drugs for your quality of life.
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Gum I don't know what to say except here are some (((((hugs))))
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Gumdoctor, thanks for taking time to check-in with us. I’m so sorry you are dealing with these difficult symptoms. Hoping the your medicine brings relief from pain and reduce’s cancer soon. (((Hugs)))
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Dear Gumdoctor, we are all with you. World needs you, we need you. This is just a lower moment in your very strong heart, and things will get better soon. Lot's of warm hugs, Saulius
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Gumdoctor, thank you for your kindness and openness in letting us know what's going on while your body is under siege. My wishes hopes, and sincerest prayers that you have relief soon. I know you are being brave, but take those pain meds.
xoxo Katty
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