Halaven - Day 1

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  • GatorGal
    GatorGal Member Posts: 750
    edited May 2016

    I just had the first treatment of the second round of abraxane. The first few days were pretty rough but I had a decent weekend. The worst se is the fatigue. I try not to schedule too much in any given day, scan scheduled for May 24 and see the oncologist for results on the 25th. Will get an idea if the abraxane is doing any good. I'm worried I will run out of options if I have to keep switching treatments. I know Ibrance is an option out there, I've heard both good and bad. I would have to go to a different infusion center but can deal with that. I'd rather stick with abraxane as long as possible. Was sorry halaven didn't work for me. Sure hope it works well for you!!

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2016

    well, I'm in the hospital after a bad reaction yesterday after my chemo treatment. The same thing had happened last week but i drove home and crawled into bed. It didn't start til I pulled into the driveway. Scared me enough that I did ask a friend to take me yesterday. I don't think I've heard of rigors before but that is what happened, about 20 minutes after treatment. I was still in the lobby and able to get myself back up to the treatment room where the nurses pounced on me. Demerol and Benadryl got things under control. My entire body was shaking/convulsing and my pulse ox was in the 60's, heart rate 162, experiencing severe shortness of breath, lasted about 20 minutes. The decision was made to keep me. Waiting 48-72 hours to see if it is an infection. If so, they will probably remove my port. If not, they will assume allergic reaction to abraxane and change chemo again. Being treated with heavy duty antibiotics in case it is an infection. Whew, it's good to just feel typical chemo crappy. On the good side of things, the hospital food is pretty good. lol

  • blainejennifer
    blainejennifer Member Posts: 441
    edited May 2016

    GG,

    What are the plans? It sounds absolutely terrifying! Fingers crossed they have figured it out by now.

    Jennifer

  • Modum
    Modum Member Posts: 40
    edited May 2016

    Glenna,

    Sorry to hear you had such a scary reaction! Good thing you were still in clinic! When will they know if it's an allergy or not? Hang in there!

    I hope (Jennifer, Phyliss and Suzanne) are doing well on your treatments! I am waiting for a ct scan to see what's happening with mine.....and waiting...

    Maureen

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2016

    I'm home and on the mend. They decided it was an allergic reaction to abraxane. Nothing ever showed up on cultures. The good news is my onc wants me to start Ixempra which is what I wanted to begin with! I see him tomorrow to discuss is. The bad thing is ct done in hospital shows new tumors in the left lung that weren't there before. Hope ixempra is my magic bullet. Evert time I turn on the news lately they are reporting on progress made in this war on cancer. I think we are getting close!!

    My sister and her husband have been here so I have been totally pampers. They leave today. :(

    Hope you are well doing well. Maureen, let us know your cat results!!

    Love you all!!


  • GatorGal
    GatorGal Member Posts: 750
    edited May 2016

    Saw my oncologist yesterday. Had the xgeva shot. I'm being given a three week break to get the abraxane out of my system and will start Ixempra on June 15. Sounds like se's are pretty similar to other chemo therapies. I will be getting it once every three weeks. My oncologist did tell me I have to have a driver. Other than that, I'm just hopeful that this is the one that is going to work for me!

    Hope you are all busy enjoying spring weather. Miss the occasional updates!!

    Love, glen a


  • Texasrose53
    Texasrose53 Member Posts: 290
    edited May 2016

    Hey Glenna, Fingers and toes crossed and a prayer thrown in there for something extra that your next chemo is the one for you! Keep up the positive attitude!!!

  • Crone
    Crone Member Posts: 77
    edited May 2016

    Even though Halaven has given me some hard days, you have to stay with what's working. Tumor markers were 1300+ in February, they have been dropping since I started on Halaven. Tumor Marker this week is 89 and CT shows some shrinkage in liver tumors but a few additional bone involvement.

    So for now I am very thankful for this drug and hoping it works for everyone who is currently being treated with this drug.

    Hoping that those who moved on from this drug are finding good results on their new treatment.

    Thank to the Veterans who have served our country and those who are still serving

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2016

    crone, wow, halaven is your chemo! Great news on the tumor markets. Fantastic drop! I'm so happy to hear your news.

    Texasrose, thanks for the encouraging post. I'm very hopeful Ixempra is going to be the one that works for me!!

    Love and hugs, Glenna

  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2016

    Hey Halaven Ladies,

    I just finished my second treatment of the third cycle. When I started, TMs were 180. During the first treatment, they didn't budge, but as of two weeks ago, they were 40.8.

    The second cycle was a horror show. Big fevers. Anemia. Fatigue. Really was thinking about stopping this treatment, as it was too hard. Turns out the anemia is responsible for some of the fatigue and shortness of breath. Fevers just happen with Halaven, and if they are killing cancer cells, I won't complain.

    Taking iron supplements now, feeling much improved. MY TMs are diagnostic, so onward we go.

  • Crone
    Crone Member Posts: 77
    edited June 2016

    Halaven is not on my list of favorite breast cancer treatments, actually there are no treatments on that list. Eventhough Halaven has been hard on me, it is working. Feb. 29th, CA 27/29 was over 1400, yesterday it was 49 and that is with two dose decreases.

    Hopefully each of you, will have similar results

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2016

    Jennifer and crone,

    Glad to hear you are getting some good results! Love hearing good news. A week ago I started Ixempra. Hasn't been the easiest week of my life but it could be worse. I do like only having treatment every three weeks. I feel like I will actually get a break from the cancer life. Keep up with the good results. It was nice to see your notes!!


  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2016

    GG, I hope the lxempra works like crazy for you. Crone, Halaven has been kind of tough for me, but it is working, so I'll keep showing up in the infusion room raring to go.

  • GatorGal
    GatorGal Member Posts: 750
    edited July 2016

    crone and Jennifer, hope you are still having good results from halaven, I had my second Ixempra infusion Wednesday but it's too early to see how it's doing, will be having 5-10 radiation treatments on my left iliac bone. A tumor showed up there last September but lately has been growing and causing quite a bit of pain. My oncologist things we can zap it and be done with it, I've never had radiation so am a little apprehensive, see the radiation oncologist on Monday a,m. It's always something!

    Hope summer is being good to everyone and really hope our country can get through these riots in a peaceful way with no more killings.


  • hansaim
    hansaim Member Posts: 68
    edited July 2016

    Hello, I just wanted to introduce myself. I got a call today that I would start Halaven in Aug. I was dx'ed 3 years ago and have had xeloda, Abraxane, faslodex/Afinitor. The nurse went over all the side effects with me today. I am off to Banff with my family for 2 weeks then a new chemo. My ca15-3 has been creeping up so I knew change of treatment was coming. Hope that Halaven is kind to everyone here

  • blainejennifer
    blainejennifer Member Posts: 441
    edited July 2016

    Hello Hansaim,

    I'm starting my 5th cycle, and my TMs are actually in normal range now (36), after a recent high of about 200. Nothing compared to my diagnosis numbers - 2,600.

    I'm balder than I was on Taxol, and have had more nausea, which has been easily controlled with Zofran. Halaven can cause some pronounced anaemia, which I had/have, so I had to go off my vegan diet and take iron supplements.

    What I have learned is that they expect you to have anaemia on this drug, so that when you are shattered with fatigue due to it, they can overlook the anaemia as a cause. Monitor your CBC numbers, and if you feel super tired, like not able to climb stairs without sitting down kind of tired, start talking to your team about resolving the anaemia.

    Keep us posted. So far, I'm liking this drug. I hope it likes me for a good, long time.

    Jennifer

  • GatorGal
    GatorGal Member Posts: 750
    edited July 2016

    Jennifer, good to see you're still having positive results with Halavan! Love those numbers. Welcome, ha said, and Hope that halaven is good to you as well. Had my Ned Ixempra and after my 9 days of feeling fatigued and crappy, I'm enjoying this week. next week, chemo, had a scan because of increased pain in my pelvic area and onc found my body was telling the truth. The tumor has grown quite a bit. I'm going to have 10 radiation treatments starting next Tueaday, hope it does the trick. Take care everyone

  • hansaim
    hansaim Member Posts: 68
    edited August 2016

    Tomorrow is my first infusion. A little nervous, but not much.

    Blainejennifer, thank you for the heads up about anaemia. I am already mildly anaemic and have been on iron for a while.

    Today's lab showed low WBC which is not unusual for me. But also high Gamma GT. I am worried that it might indicate liver mets, yikes...Hope everyone is well.

  • GatorGal
    GatorGal Member Posts: 750
    edited August 2016

    yeah, finished radiation and now just on arimidex and xgeva. I feel like I'm doing nothing to fight cancer but have a scan sept, 1 so will find out then if anything is working. I had energy yesterday and actually did some stuff around the house and felt good, it was awesome.

    Hansaim. Hope your treatment goes well and halaven works for you! I think we're all a little nervous when we try new treatments. I have liver mets and will now go look at my gamma GT. I didn't know that was a sign of liver mets. Learn something new everyday!

    Jennifer, hope you are continuing to do well!

  • blainejennifer
    blainejennifer Member Posts: 441
    edited August 2016

    GG - hope the radiation does the trick. It did for me when I had some hip silliness. If you had energy, that's the best sign of all.

    Hansaim - I'm starting my 6th cycle, and TMs are down to 29. After my scan, there is some talk of going off the Halaven and going to an Anti-Hormonal, to see if Halaven has put me into some sort of durable remission. We'll see. This cunning plan has yet to pass Tumor Board approval. I know my bone mets are resolved, because they don't hurt. But, the imaging is necessary to see if the wee liver mets have buggered off.

  • GatorGal
    GatorGal Member Posts: 750
    edited August 2016

    Jennifer, tumor marker sounds good. YEah, so glad halaven has worked for you, my oncologist conferred with a BC specialist from university of Pittsburgh and she recommended to him that I try the hormonals again since I had been off them for five years. I'm on arimidex and not having any se's yet but it's only been a couple of weeks. I do enjoy being off the chemo for a while. Scan on sept. 1. Hip is better every day. Durable remission sounds great!!


  • hansaim
    hansaim Member Posts: 68
    edited August 2016

    GG, you are full of good news. Glad to hear that hips are getting better. Will make a big difference in balance and mobility. I had extensive mets in pelvis but much better now. Hope that Arimidex keeps you stable for a long time.

    Jennifer, keep us posted with your scan. It would good to be off of chemo for a while. I do not do well with hormonals though the pathology showed ER+, PR+.

    I did not know each cycle of Halavenis two treatments. I am feeling fine today. No nausea, yet. Will see how it goes in the next couple of days. The hospital scheduled me for 6 cycles. I just hope that it works well and my body can take it as planned. A beautiful sunny day here in BC! Will go out and soak in some sun.

  • Emilylaughed
    Emilylaughed Member Posts: 1
    edited September 2016

    Any experience with diabetes and Halaven? My mom's first two treatments went relatively well—And from the looks of the skin involvement, it seems to be working—but during her rest week between treatments her morning blood sugar readings began to drop. (It's usually around 120. It's hovered in the 80s/90s, and today went down to 69.)

    I know there's concern about liver involvement; could that be what we're looking at? We're scheduled to go back tomorrow for her next treatment. Her oncologist is on vacation, but we'll have a nurse practicioner examen her.

    Just curious if anyone else has experienced!

  • blainejennifer
    blainejennifer Member Posts: 441
    edited September 2016

    Halaven People,

    I got scanned yesterday, and the Halaven has done its job. My three liver lesions have disappeared, and all my bone lesions have resolved. TMs are in the low 20s. I had 8 cycles.

    So, I've asked to be switched to a gentler treatment, and the Oncologist agreed. The anaemia from the Halaven was kicking my fanny. I will be moving to CMF. I know it's another cytotoxic therapy, but the Doc maintains it will be much easier than the Halaven, and should keep me stable for a while. That would be nice, wouldn't it?

    I've done Xeloda, and gotten 13 months out of it two years ago, but - according to Doc - enough time has passed, and the drug is different enough that it should work well.

    I can go back to Halaven in the future, as I will have left before I developed resistance.

    Best of luck, Halaven ladies. This stuff really worked for me.

    Jennifer

  • hansaim
    hansaim Member Posts: 68
    edited September 2016

    Jennifer, that is fab news. Not sure what CMF is. Is it an oral chemo or IV? I hope that it would keep you stable for a long time.

    This has been a slow thread. I am finding Halaven very doable; no nausea, fatigue on day 2 and 3. My white counts are taking a beating but I get Neupogen/Neulasta. I started the 3rd cycle yesterday. I have enough hair on the sides and the back of my head so I wear a cap everywhere. TM 15-3 has been dropping, from 240 to 110, so far. The plan is to scan after 4 cycles and stop after 6 or 7 cycles.

  • Crone
    Crone Member Posts: 77
    edited October 2016

    Have not posted often as my experiences with chemo has been to find the rarerest , seldom seen, side effects and make that part of my experience. I have had to stop half of treatments because they quit working and the other half due to side effects that came with the advice to stop the drug. I don't want to alarm anyone.

    After saying all that the Halaven was amazing. I had a short trial with Pablo but my platelets dropped to 35 and my tumor marker went to 1400. Halaven was started in March and after 30 days, t.m (Ca27 - 29 C) was 281 and dropped to 51.7 in July. Due to side effects, the dose had to be lowered twice and I am currently on the lowest dose.

    Side effects have been low counts, neuropathy of feet and hands, fatigue and one that isn't listed as a side effect, Mucositis of the colon. As my internist explained, the lining of the colon is like the hair producing cells and the cells in the mouth that lead to mouth sores. It was extremely painful and in NOT a usual side effect of the drug.

    My scan in July showed liver tumors shrinking, and bone mets healed. Unfortunately the last three tumor markers have been going up so I will have a scan on Oct. 13th, Metastatic Breast Cancer Awareness Day. I will go to the imaging center with copies of 13 things you should know about Metastic Breast Cancer to hand out to the staff.

    I wish I had a copy to hand the person who took my vitals yesterday. She asked how I felt and I said " like I had chemo last week". As she walked out the door she said "well it will be better soon"

    Wishing much success on Halaven to all of you, without the Mucositis, it might have been the easiest since hormone therapy.

  • Rseman
    Rseman Member Posts: 69
    edited October 2016

    Hello everyone,

    It looks like I am going to start Halaven within the next week or so. This will be my first experience with an IV chemo. I was diagonosed over 2 1/2 years ago. I keep hearing conflicting info regarding side effects. My MO gave me a choice to start Taxol or Halaven and I picked the Halaven because he said I wouldn't lose my hair and it is a faster infusion. I'm trying to fit this all in while I work full time.

    I'm nervous because I don't know what to expect. If anyone could take a moment and tell me their experience I would greatly appreciate it. In the meantime I will look back at previous posts in this thread.

    TIA

    Renee

  • cenglish62
    cenglish62 Member Posts: 14
    edited October 2016

    Hi Renee,

    I've completed 4 of 6 cycles of Halaven. I'm sorry to tell you but I did lose my hair. I'm working full time as well, I currently have my treatment on Thursday afternoons and take the next day off to rest, I feel my worst Friday night and Saturday and then go to work Monday morning. I've had trouble with mouth discomfort and I run a fever (both not common side effects for everyone). I've been on a 3-week break, my doctor had me skip cycle 5, my tumor markers have been steadily going down but the numbness in my hands and feet became worrisome. I have noticed some improvement this week just in time for cycle 6 this Thursday. I do experience nausea but manage it with medication and old school remedies (ginger ale, crackers, small frequent meals, etc...). The fever can be difficult, but my doctor told me that is not a common side effect so maybe that won't happen to you. My white cell count has been an issue at times and some weeks I get a neupogen shot.

    This drug has not been too easy for me, but with my bad days falling on the weekend I've been able to maintain my work schedule. It really helps that my employer and co-workers are very supportive. I wish you well and hope you tolerate this drug well. I've been bald three times now over the last 6 1/2 years and have a fun collection of hats. I've learned to embrace my baldness and I now know that beauty comes from within. I can also sleep an extra 15 minutes every morning not having to worry about shampooing and blow drying what used to be thick unruly hair. I wish you all the best and hope you have success with this drug.

    Celeste

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited October 2016

    Hi

    I just had my first Halaven this afternoon. Celeste, thanks for the post on what I may experience. I didnt have time to go back and read others. Saw my onc and she discussed this treatment and a couple of hours later I got it! Didn't know till then what I was going to move on to after being on a clinical trial drug combo that didn't work for me. This will be my fourth time losing my hair - just got it back after Taxol. Oh well.

    Renee, glad to hear you are also starting soon. Hopefully we can share and support each other.

    And to everyone here, wishing you success for a long time!

  • Rseman
    Rseman Member Posts: 69
    edited October 2016

    Thanks for the info!! I am starting Halaven on Tuesday and I feel much more prepared. I decided to get treatment on Tuesday despite the info that the next day is rough because my job told me to have my bad days on a work day and have my good days on the weekend when I get to spend the most time with my daughter. BEST. BOSS. EVER!!

    Celeste it is so hard being on a tough drug when it works. I had stopped my 1st line of treatment (Femara) because of side effects when it was working. I will always regret that. I had no perspective of what "hard" was for me at the time. Now I don't care. If it works, I'm staying on it.

    Hummingbird it looks like we will be on very similar schedules!

    So can I ask, how did you handle the first time you lost your hair? Emotionally and physically? Did you cut short and then just shave it off? Or just let it fall out? Was there anything you did to keep your scalp healthy?

    Thanks for writing!

    Renee