Halaven - Day 1
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Day 4 after Havalen injection. No se's except for extreme tiredness but I just started a new pain med so it could be that.
Wanted to add that when we discussed Havelen I mentioned that I did not know how I was going to get back every day to take the Neustra (sp) he said we don't do that here
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Woke up in extreme pain, but hope that's just because it's time to change my Fentanyl patch. My right eye is hurting and burning. Used eye drops, no help so far. Plus a general feeling of just blah. Might be a sleeping day Definitely a chemo head day
This is day 5
Continuing day 5. At 11:30, I felt like if I didn't lay down, I would soon fall over. I slept for 8 hrs. Woke up pain still in my back. The rest is gone
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Am I the only one on this tread?
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Any one else having mental side effects? Day 8-11 I feel crappy but I am also just a bundle of tears and crying. It is so bizarre. I recently saw a toddler meltdown because they weren't feeling well. I have never felt such a kinship. That is exactly how I feel. Just an emotional meltdown driven by feeling icky. The thing is, the emotional meltdown feels in excess of the icky. Anyone?
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I will be starting Halaven on Tuesday as long as my blood counts are high enough.
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Fingers crossed for you Lynne! I'm rooting for you. hugs, dee
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Lynne, Hope this new tx treats you well in all respects. Sending a hug! Jo
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Just got the news I am off eribulin and on to probably xeloda. I will hop on over to see what awaits. My body just could not maintain my white blood cells and I couldn’t get a full cycle of drugs. I wish everyone here the best
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Mik Yes, it's been messing with my emotions. I'm prone to depressive episodes anyway, so I've been on antidepressants for years. But this feels different. A sick feeling in te pit of my stomach and feel like te weight of the world is on my shoulders.
Tell your doc. meds and conceling (sp)will help.
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Thank you Dee and Jobur.
I had my first Halaven treatment today. It was uneventful which is great.
Anne45, I hope that Xeloda, if that’s what is next for you, works well for a long time.
Snooky, How are you doing? I hope you are feeling better.
Hugs and prayers from, Lynne
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Hi all,
I am set to start Eribulin next week. I have read much of this thread but not all. I trust my MO and I have been heavily pretreated so know this is likely the best next step but I am super anxious. I am on Abraxane now that worked 4 months before progression. I guess for me each new treatment change makes me more anxious than the one before.
Thank you all for the good information.
I appreciate snooky 1954 description of starting this medication and mikainsb and snooky1954's discussion of side effects.
Anne45 xeloda was my best experience with chemo, longest lasting most manageable side effects. I wish for you the same.
Mary
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Mary, Welcome to the thread. I hope that Halaven works well for you for a long time without any negative SEs. Like you, I am heavily pre-treated.
Today is day 4 of week 1. I am feeling very tired, and my appetite has disappeared. Both issues started yesterday. I don’t know if they are from Halaven, but I am reporting it here it anyway. I feel fine otherwise -no nausea or vomiting, no pain. I have just become a lump on a log.
Lynn
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50's Girl---that's about it a lump on a log. And like I have a low grade flu. No interest in anything. Week off no difference
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appt this afternoon for treatment. Since my cancer is also on my skin, I DON'T THINK Halvan is working. I noticed this a week ago. And this last week has been hell. (besidess Taxol) nothing else I've been on has worked.
I just came from my week off, felt no difference. I'm a mess of stress right now because the ONC said Halaven was last treatment for me. He says ( i'm 67) I'm not physically strong enough for any of the harsher chemo's. I live alone. I've just recently signed up for Home Health services.
Just a few minutes ago, I thought I was going to vomit. But it was just dry heaves with a bit of mucus. Nonee of my treatments have made me vomit, so I don't know what is going on. Do you think it's just stress? I took a Zofran.
I'm not a fighter like you guys. I just sit in my home day after day seeing no one. I'm a very devote Christian and Jesus has brought me through all of this. In truth I just want this to be over
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Snooky, Each of us faces this disease in the only way we can. Everyone is different. I have considered you more of a fighter than I am, so I guess it’s all a matter of perception. I have my dh with me, and I don’t know how you face this monster alone. Faith certainly helps, but there are still times when we are left feeling vulnerable and even afraid. I know you have felt unwell during your treatment with Halaven. In my experience feeling weak or sick makes everything harder to cope with. I hope that Halaven is working for you, but if it is, something must be done to lessen the SEs. It is possible that today’s dry heaves are due to stress, you are certainly under a great deal of it. I will be thinking of you as you go for treatment. When are you due to have scans to evaluate how well Halaven is working? Please let us know how you are doing. Sending you a virtual hug and lifting you in prayer.
Hugs and prayers from, Lynne
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Dear Lynn, Thank you so much for your kind words of encouragement, they mean alot. Well time to get cleaned up and ready to go. God Bless You
Not sure on scans.
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Hi Lynn, Sorry it took so long to get back to you. First, ONC said that the signs that I thought meant progression were not. (lump getting larger etc) he said unless I has new areas of where the cancer had spread on my skin, that I couldn't tell by just looking at it. Lump might well be growing but we don't know with what it could be with dead skin cells. He said to just chill about that and stop looking for signs. We'lll scan in 2 months and then we will know.
Best thing my tests showed a mutation that they have a drug for.
Thanks for all your prayers and hope that you know I'm praying for you also. HUGS
Another good thing is I'm getting (in the middle of) being signed up for home Health Care. It was very hard for me to do. Hard to admit and accept that you can't take care of yourself anymore. But things around here were getting to difficult to keep up with.
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This cycle is very different than otheer cycle. Three days after cycle, I started feeling fluish and it's gotten worse evwey day. It's time for my next infusion tomorrow tomorrow and I feel misersble. My onc told me the SE were accumlative and they sure are. I can handle it if the medicine is working.
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Hello ladies. I have failed another chemo so they are setting me up to start Halaven next Friday. I also was told I only have 2 more chemo options and halaven is one of them. They also told me to go to the other big teaching hospitals and get a 2nd opinion or try to get on a trial. Has anyone else done that?
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melmcbee, I hope that Havalen treats you gently and treats your cancer mercilessly. My MO sent me to Dana Farber for a second opinion and to find out about clinical trials before I started Halaven. It was good to get another perspective. Unfortunately, I did not qualify for any trials. The MO at DF told me that my MO was doing a great job. She did suggest Verzenio. I tried it, but my body could not adjust, and I was miserable. My TMs took a big jump, and I was switched to Halaven. I am running out of options. Btw, I found it very easy to deal with DF. I signed a release form, and they had copies of all my scans and records sent to them in a matter of days. I think you will probably have a similar experience there in Florida.
Snooky, I am sorry you are having such a rough time. Can they try a dose reduction or is that not done with Halaven? When will you have scans to find out if the treatment is working? Is Home Health are all set up? I am sure it was a difficult step to take, but we are not superheroes, and we can only do so much. You need to concentrate on your health and well-being, and let home health help you out.This is my week off. I have been exhausted since my last treatment (#2). My appetite has been poor, so I have been eating whatever sounds good. I have been napping a lot. Otherwise, I am okay - no nausea, etc. Today is my birthday, and guess what I got for a gift - hair all over the floor of my shower. Now, I don’t have much to begin with. It is still short and thin from Taxol and Adriamycin, but I was kinda hoping that it wouldn’t fall out this time. Oh well, time to get out my wigs and scarves. Being bald isn’t the worst thing in the world.
I hope you keep posting here so we can share our experiences.
Hugs and prayers from, lynn
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Hi Lynn, I was worried about you 'cause you hadn't posted for so long. Good to hear from you. HAPPY BIRTHDAY. Same for me no appetite, losing weight. Onc ordered me a medicine to increase my appetite. Worse is the depression is starting to hit so bad. Last couple of days I've slept all day and had no trouble sleeping at night. I'm trying to get in with a councelor. My oldest son wants me to quit Havelen and just let the cancer do what it will do anyhow. He says I have no life on this med. Confusing. My Onc said I could have the infusions every other week cause this is hitting my emotions so bad. My hair is coming out in the comb too.
I'm just getting exhausted with all this cancer stuff. Think I took a big turn when ONC said this was the last chemo he would put me on. He doesn't think I'm strong enough for any of the harsher chemos.
My primary told my boys they had to get over here more often. Call. Text. You know more support. I don't want to just give up but I haven't found a TX that worked for more than three months. Took all hormonals and zeloda, and nothing . (except Taxol but it was damaging my leg so ONC stopped it,) The thing is I don't have alot of cancer. My spine is loaded, a few nodules in my lungs, one small breast tumor but then there's this cancer that spread all over my breast, chest and down my side. It tears my heart out every time I see it. Small little grouped up nodules, it was fumigating but Havalen stopped that. Praise God. My brain is just a mess of confusion. My fervent dream is to die in my sleep and step into my Saviors arms. Sorry for the negativity but I'm just so sad.
Yes, of course, I'll stop by so we can talk. I sure need an understanding friend. <<<<HUGS>>>> and lots of prayers.
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I will be starting in this thread in 3 weeks. But read through and wanted to pass along what my MO said dosage would be. Thinking this may be an option for anyone having issues. My apologies if this has already been said.
Dosage 3 weeks on 1 week off at a smaller dosage of .9. My understanding smaller dose more frequent. Based on a study at SCCA.
Julie
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Hello JZm and welcome to this thread. It has been awfully quite lately. My dose is 1.4 but to help with side effects my ONC has changed schedule to every other week. Thank you for sharing your schedule. My last infusion was Tues of last week and I'm just now starting to feel alive again. Next infusion is Thurs of next week.
I hope the very best for you. I'd gladly answer any questions that you may have but,, I just don't know much about Havelen. I just started last month and haven't had first scans yet.
Hey Lynn, Hope your hanging in there. The med the Onc gave me to increase my appetite sure is working! Last night I ate three hugh suppers! But that's fine for now since I had lost so much weight. The med is MGP (Megestrol Acetate oral suspension) Apparently it's a male hormone, progestron (sp) which a Pregant female naturally produces since she's eating for two.
I'm starting to feel more alive today! Finally,,10 days after my last treatment.
Home Health starts coming this afternoon, as hard as it is, I'm very grateful. Hope that your SE's from last treatment are getting better too.
Hope both of you have an enjoyable week-end
Many Blessings
Sue
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Snooky I am glad you are feeling better. How would you compare havalon to taxol? That is what I just finished and it was pretty easy to deal with. Hoping havalon is easy for me but nasty to the mets.
I was just diagnosed with brain mets so I need a strong chemo after radiation to make sure I don't get more. So far nothing lasts more then 3 or 4 months!
Thanks
Julie
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For me, Taxol was way easier.
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melmcbee, Did you have your first treatment? How did it go? I hope Halaven is kind to you.
Jjzn, I found taxol to be easier, too, but I know that some people have found Halaven to be easy. I am hoping that my body adjusts.
Snooky, I am glad that your frequency has been adjusted. Hopefully, it will have a positive impact on how you feel. Relax and let Home Health do their job. You can’t do everything yourself. Wow, that drug really makes a huge difference on your appetite. At least now you will get the nourishment you need.
Yesterday was the first day that I felt somewhat normal. I am hoping that continues. My week off come to and end soon. I will have treatment one of cycle two on Tuesday.
Have a good weekend.
Hugs and prayers from, Lynne
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Was reading thru the beginning of this thread, my gosh, those girls were getting massive doses. Usually, in the 2. 6 range! I'm just getting 1.4 and that is suppose to be full dose. No wonder there were alot of drop outs. To be fair, Havelen had just come out so I guess they didn't have the dosing down. Like when Zeloda first came out.
Can't wait for first scans so I'll know if it's working. Spacing it out to every 2 weeks has made a world of diderence. Be thinking of you tomorrow
HUGS
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Hi snookie1954:I came upon this thread because my oncologist is now talking about putting me on Halaven since Xeloda doesn't seem to be working for me. Your experience reminded me of mine because I also have a tumor in my right breast that is breaking through the surface and spreading down the side of the breast and toward my side. I know how distressing that is. I was diagnosed in 2017 with de nova MBC. I was told back then that surgery would not be of any benefit at this stage, though I've seen studies that sound like it can improve quality of life if not survival. It's very frustrating to not be offered it even for palliative or comfort care. I'm also dealing with a separate MBC in my left breast that is HER2+ and am recieving Tukysa for that. As far as mets, what I have so far is lymph node involvement and some plueral fluid in my lungs, but not any shortness of breath or any other symptoms. The only pain I have is twinges from my right primary tumor. I had radiation to that area in January of this year and got a few weeks where it seemed to be healing up but now is heading in the wrong direction, tumor markers on the rise. Today I was told that further radiation would not be an option because if I didn't heal well enough I would not be able to have chemo. My onc did tell me that FoundatioOne testing could be an option if they could do a biopsy but I'm not getting my hopes up yet. Had you had that done? Also, have you or any of the other ladies had SBRT to their tumor or mets? I wonder if I should seek a second opinion at a bigger hospital.
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Elenes
So very sorry to hear what you're going thru. My doc. won't do Foundation 1 testing. He says mostly they just find mutations that they have no drug for, My tumor did come thru in a couple of spots and it started fumigating. Luckily antibiotics cleared up the infection, no more oozing or smell. Unfortunately my ONC is just a cancer dr. not a breast cancer dr,
Mine started with just a small bump. It looked like I had two nipples. I told them then to take the breast, but once you get to MBC they won't do it.
Honey, I have to get back to this. Should be getting ready for my Havalen apt in a couple of hours
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Three days ago I had treatment one of cycle two. Things seem to be going well. I am not feeling nearly as tired this as I did during cycle one, and I am hopeful that continues. My blood counts were all good, even my liver enzymes that were high two weeks ago have come down. I have very few hairs left on my head. It started falling out a week ago and has been disappearing quickly. My eyebrows are also thinning out.
Snooky, How is your new schedule working out? Do you feel any better?
I hope everyone is doing okay. Send us an update if you have a chance.
Hugs and prayers from, Lynne
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