Halaven - Day 1
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I post with much sorrow the passing of our friend liwi. I texted her to see how she was doing and received a text back from her husband. Liwi (Barbara) passed on December 16, 2019, at home on hospice. May God surround her and her loved ones with peace.
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Hello to everyone. It has been a long time since posting and even coming to bco Community. I just could not emotionally recover from the bad news I received in December l, that I ran out of treatments. But I am now on Doxil. It didn't go well the first couple of rounds. They have done full liver radiation and i finally get a reduced dose tomorrow.
I came to you guys first as I found this thread easy to follow and with so much personal support.
I find myself glum all day everyday and can't pull out of it. Hopefully Doxil works to prevent progression or it is over for me. See...glum.
Mauree
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Kayla I’m sorry to hear that you are struggling with Doxil and hope that the reduced dose is easier for you to handle. I am not in the same position as you so can only offer you hugs and support at this time. Maybe seeing your local GP to help with the glumness you are experiencing might help. You remain in my thoughts and prayers, take care xx
Jennie
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Kayla, I'm sorry you are struggling but there is hope as long as you have another treatment. I say prayers and the rosary often and feel this is helpful.
Jaylea, I didn't know Barbara but am sorry to hear of her passing. It's always sad for families to lose their beloved members but I feel the sisterhood we develop here makes the loses feel personal. It could be any one of us.
Three weeks ago I thought I was at the end of my treatment plan due to an increase in my tumor markers, but I had a scan today...there's been a significant improvement and lessening of cancer throughout my bones, no new spots and the lesion on my liver is gone. This is way better than I could have expected. SO...what do I know? Absolutely nothing. I have to trust the professionals and God. He has been very good to me. Thank you too ladies for keeping my spirits up.
Amy
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Kayla/Maureen, I am sending you lots of love, and hope that Doxil will help you. Your spirit needs healing. Can you talk to a counselor or therapist who specializes in helping cancer patients? Reach out for everything that nurtures you, and know that you have many friends here who are holding your hand.
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Maureen, you have every right to be glum. Your body and spirit needs some healing. Don't discount that the Doxil itself could cause depression. Taxol took me straight down depression road. This craptastic disease stretches, bends, and breaks us a million different ways. I like Shetlands idea of counseling, or at the least some drugs. This is the time for aggressive self-care. We're here for you.
Amy, amen to good scans! I hope the SE's from Halaven are manageable so you can get a good long run of quality time.
Jennie, waving hi and hoping the fires aren't impacting your life too much. I live in Northern California and thought we had it bad with fires, but it's nothing compared to what you guys are experiencing.
Shetland, I think you're still off treatment as you await Y90. Hope your body is healing up in this time so that you're perfectly ready for the tx.
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oh thank you all for the loving support. I truly do feel it in my heart.
Kirstensmum thank you so much for your support and hugs. I hope you don’t mind me posting on the Halaven thread but it is just so full of love.
AmyQ thank you so much, I do pray the rosary often and have friends come by too to pray with me as well, but hide my truth.
Shetland thank you it is so nice to see your name and hope all is well with you. I do have aplan to join a support group with people in the same boat, so to speak.
Jaylea you always provide such loving support to everyone. Yes I think I’ll take Shetland’s idea.
My love everyone.
I will read back and see everyone’s recent posts. And get out of my own head.
Maureen
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OH Maureen, I am so sorry you're feeling so glum. but i don't blame you. it's so difficult to pull yourself out of that funk when you get the kind of news you did.
is it possible to get another opinion on any treatment options? i glad you're on doxil now and hoping that the lower dose treats you better and gets those liver mets at least stable. and i agree with others here that this is the time for self care and perhaps some counselling? maybe your cancer centre has some options.
we all here are rooting for you but sometimes that isn't enough. gentle hugs from me too. dee
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GG27/dee thank you so much for your support. It is always nice to hear from you. I definitely feel the support you give and of course others give. I have talked with a friend who may be able to help me out of these glum. She seems to be able to hear gloom and doom, and not judge me but support me.
Big hugs to everyone and hoping everything is going well.
Maure
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hi all,
my time on halaven is over, with my liver mets growing and inviting some friends as well. i will be going on weekly doxolrubicin. my MO is finally back from 6 month sabbatical and i will talk to her next thursday. i am finally starting to get rid of the horrible neuropathy that i got from halaven so i guess that would be the only good thing. best thoughts to all of you. cheers, dee
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Dee, so sorry to hear of your progression. I've not heard of doxolrubicin, but hope it treats you well. My neuropathy did get much better once I took a break from Halaven.
I did one course of Ixempra and Xeloda but had to take the second course off. I had terrible esophagitis from rads to sternum and between that and miserable SE's from the 2-drug combo (severe joint and body aches, chills, nausea) I took myself a nice extended break. DH and I are now having serious conversations about quality of life and what that means for treatment decisions. I'll be talking to MO this week to get her input. Right now I'm thinking that if I can reduce the Ixempra dosage and drop the Xeloda altogether, then I'll consider staying on this course.
Thinking of all of you, Maureen, Jennie, Amy, Shetland, Pajim, and others I might have missed...
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Hi Everyone -
I see several familiar names which is comforting.
I believe I will be starting Halaven tomorrow. It will be my 4th chemo and 5th line of tx for MBC.
Looking forward to reading more in your thread and learning from you all.
Gumdoctor
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Hi Gumdoctor, I got 7 months out of Halaven. I came into it weak from dose-dense taxol and gemzar and had a rough first 3 months, especially with neuropathy and limb weakness. I took a month off, regained weight and strength, and the last 3 months were easy - I wish I could have stayed on it longer. I think Pajim got a good long run on it, too.
The infusion itself is quick - 5 minutes. I only took Zofran as a pre-med but others have had steroids. I strongly recommend icing your hands and feet for at least 20 minutes prior to push, during, and as long as you can stand it (and don't get rushed out of the chair) afterward.
Keep us posted on how you're doing. Sending hugs, JL
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Hi everyone,
Just stopped by to say that Halaven has stopped working and that my liver mets have grown and I have more on both sides. Also I have progression nowto the lungs, and nodes have grown bigger in chest and abdomen. I honestly thought this chemo was going to be the one to work but not to be. I am starting carboplatin and gemcitabine next week.
Wishing everyone good luck on Halaven and hope that any side effects are minimal. Take care xx
Jennie
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Jennie, so sorry to hear of your progression and that you're moving on from Halaven. I've heard of several women on the Carbo/Gemzar combo, but don't know if there is a specific thread for it. In any case, I'll be thinking of you and hoping for good things from the new combo.
Maybe it's a defense mechanism, but I've started to assume that my scans will show progression. The only question is by how much. It's still a gut punch, but having that armor on seems to blunt the full impact. I've been training my family and friends, too, saying that at this point we're just trying to slow the cancer down. That makes the "how did your scans come out" conversation a little easier. And hey, maybe I'll get a good surprise or two. Sending everyone hugs, JL
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Thanks Jaylea, I have seen a thread for it but it looks fairly quiet. I will read from the beginning and see how I go. 😊 Wishing you good luck with your scans 🤞
Take care everyone xx
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Gumdoctor. I found you. How did it go on Monday?
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Hey - It went fine exxeot they would not let my husband in the building. He sat in the car for about 3 hrs...COVID-19 precautions...
Gumdoctor
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Hi Kirstensmum, I've been on Gem/carbo. I didn't find it too bad, only issues were low platelets for me. It got me to NED and that's the only reason I stopped. Happy to try answer any questions if I can remember the details.
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Has anyone had nausea lasting a week or more from Halaven? I'm on my 6th cycle and haven't really had any nausea previously but this cycle I feel on the verge of throwing up all the time. Only difference is adding neulasta. I have leptomeningeal mets so I'm terrified it means progression.
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Hi AllyBee, thanks for offering me advice on gem/carbo. 2 weeks ago my oncologist stopped all chemo as my liver is to sick to continue treatment and she has asked that I be prepared for the end. I had been getting sicker but was completely shocked at this news. (just thought another chemo) My husband is blind and she wanted to make sure that he would have support as time went on (which he has my family are very close) My dr has put me on steroids every day now and I still have hope regardless of this. I am under the palcare team for pain relief and speak with them weekly.
Thank you again for offering me your advice, I hope Halaven works well for you, I am taking a drug called ondansatron for nausea.Take care xx
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I have moved on from Halaven but check in occasionally to see how friends are doing.
AllyBee, I used to get mildly nauseous about days 3 and 4 with Halaven, but nothing that an occasional Zofran wouldn't take care of. Hoping you're past it now and it was just a fluke.
Gumdoctor, thinking of you and hoping your first round of Halaven was tolerable.
Jennie, oh my goodness, what a shocker of a conversation. I'm glad you have DH, close family, and a strong Pal care team to lift you up. I love my Pal doctor, she even offered to come to my house if it's ever needed. Sending much love to you ~ JL
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Hi ladies
I hope you’re doing well
My mom is on Halaven. She hadTNBC stage four. She only had it once, could not have the second dose of her first cycle due to low WBC. I’m frustrated because I wanted her to have this chemo asap and hopefully get rid of the cancer faster.
Anyone had issues with low WBC from the beginning? Will this still be a problem in upcoming cycles?
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Hello, quick question;
Is Halaven/eribulin considered more or less cardiotoxic compared to other chemotherapy drugs?
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Hello,
I’m not sure if anyone is using this thread anymore, but I figured it was worth a shot. Has anyone used cold cap scalp cooling with Halaven? If so, did it work? I’m starting this treatment on Friday and really hoping not to lose my hair. Just wondering if anyone has managed to keep their hair this way
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LVGirl...I am starting next Thursday the 30th.... I am wondering the same thing...it looks like this thread wasn't actually used to talk about hair failing out or not....
Also can anyone tell me how to try and prevent Neuropathy if the infusion time is so short??
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Nicole and LVGirl, I don’t remember having an issue with my hair. I had come off abraxane which made most of hair fall out and it grew back in with the Halaven but it’s been thinner ever since. I wear it shirt now but used to have a ponytail. I did some icing of hands and feet with Halaven because I sat waiting for treatment for a little bit, or getting the zometa infusion first so there was time before but they liked you to leave as soon as your infusion was done.
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Wanderingne...thank you for the response...I also posted on Facebook and am seeing people having issues with headaches..and one person having issues with neuropathy all the way on the whole leg
and having to stop because of it. I am not going to lie...my son is getting married in Nov. may be Oct. now due to COVID..and I just...really wanted to look like "me"... so losing my hair...I am going to be and already am upset about this. 0 -
I was very happy with Halaven because it stopped the cancer growth in my bones and I felt better overall. Halaven can cause neuropathy. According to my doctor that’s one of the reasons many people stop. So you need to keep an eye on it. Acupuncture works on neuropathy and works best when you start the treatment early, at the first signs of neuropathy. It helped me a lot in my neuropathy, mostly in my feet, and it never got too bad. I also used a spiky ball, soft spikes, and would roll my foot on the ball while sitting at my desk. This helped as well. My hair did thin but I did not lose it all. Other side effects I had were indigestion that caused coughing. A prescription medicine stopped this completely, pantoprozole I think. Finally, I had a very unusual side effect, which was an elevation of glucose. I worked with an endocrinologist to get that under control but it did require insulin. Remember though that I am in the 2% that have this glucose side effect. Even with the side effects I mentioned, I found this a very tolerable drug with a good qol. Once the side effects were managed I wasn’t abnormally tired or nauseous and I was able to move better because it was working on the cancer in my bones.
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thank you so much Latte! Did you do any icing to prevent neuropathy? If so how and when?
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