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Halaven - Day 1

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Comments

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Hi Teachermom -

    Sounds like you are doing very well. I personally wouldn’t worry too much about a few points increase in your TMs. My MOs considers that stable too, as that test is very finicky and can change based on other things besides the cancer, such as inflammation in the body. My TMs have been moving around like yours for the last 3-4 cycles, which was OK until my last cycle jumped 32 points - ugh. Hoping for a lower number this cycle.

    Yea for your hair! I never thought I would miss my thin hair but I do! Sucks not having hair, and cotton caps and wigs are hot in the summer - no breathing for your head!

    Thanks for your update

  • Teachermom2
    Teachermom2 Member Posts: 56
    edited July 2018

    Southern,

    Let’s just hope for the both of us it’s hiccups...i like Halaven...isn’t that gross to say?! I like my chemo!

    As far as the hair thing...although I have had some pretty bad hair days...no one knows or can tell I am going through anything. I miss my thick hair but I will take this any day!

    Just wish I didn’t suffer from such lymphedema...my arm is like a Pop-eye arm and as been for years...it sucks, especially with clothes, but I always say it could be worse...

    Hugs💕💕 we have got this!! Cancer sucks but we are stronger.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Yes, Teachermom, I feel the same way about Halaven! I'm so tired of chemo after 4 1/2 years, but Halaven is mostly doable for me still and despite some not-so-great days every cycle, I can at least live life with a decent QOL most of the time. Will not be happy when I have to change to another chemo. Only harsh ones left for me.

    Sorry about your lymphedema. Sounds painful and uncomfortable. I've not had that yet and I'm hoping I never do, although I do know that cancer is “the gift that keeps on giving."

    Stay strong - ❤️ your attitude!

  • ann1999
    ann1999 Member Posts: 88
    edited July 2018

    Hi Teachermom- it’s fantastic that cold capping and havalen is working for u! Liking your chemo is only something we can relate too. I was on Xeloda for a year and looking back would say I liked it. Sorry about the lymphadema☹️

    Knowing halaven won’t last forever trying to think about next steps. In August should find out if it worked or not, if I’ll stay on it or move to something else. Has anyone else had genetic testing? I have a PIK3 mutation and I quess A/A might be next but hear that is a tough one. Anyone hear of new trials or drugs?

    It’s a beautiful day here in MN - hope everyone is having a good day.

  • amarantha
    amarantha Member Posts: 330
    edited July 2018

    Marylark - yes, after going off Afinitor - the leg swelling eventually went away and stayed away- totally away. It is only now that I can attest to it for sure, because it was partly a function of hot weather, and here we are sweltering, and my leg is lithe and thin as if nothing had every happened. It's quite the surprise actually. So yes, Afinitor = yucky. I also spent an entire week in the hospital during the Afinitor time with terrible pneumonia and high fever. It responded to anti-biotics so it was not exactly blamed on the Afinitor. But I did blame Afinitor, and I also blamed Afinitor for wracking pains in tendons and joints all over my whole body. All that went away.

  • marylark
    marylark Member Posts: 159
    edited July 2018

    Thanks for letting me know Amarantha. I look forward to this being over.

    You're a singer, aren't you? I am a classical singer and conductor. The lung issues have been hard. Add hormone deprivation and it plays havoc on the voice.

    Take good care,

    Mary

  • amarantha
    amarantha Member Posts: 330
    edited July 2018

    Marylark ! Enchanted to meet you, fellow classical singer, and conductor even ! Fantastic ! Yes the lung issues suck for singers ! and hormone deprivation sucks. I was already not looking forward to the effects of menopause, already the High C was so hard won in my voice (dram sop) but all the chemical castration did not help. However I managed to keep on performing - was actually quite busy - school shows, prison shows, recitals, opera concerts and enjoying it up until beginning Halaven early this year. I lost all interest in singing once I began Halaven, paulawildergaubert.com It is not ruled out that I could resurrect my voice. I have done it before ... but the passion needs to come back. Meanwhile, while on Halaven I began writing opera reviews, and that was a thrill. A wonderful singer/producer friend wants me to work on the old-diva-without-high-C roles - like in Fedora, and Andrea Chenier. I must admit I hate that repertoire ! Poor me ! LOL.

    oops my website has disappeared ! I must have forgotten to pay something. Oh well.

    Here is opera musica https://www.operamusica.com/artist/paula-wilder-gaubert/audios

  • jillts
    jillts Member Posts: 12
    edited July 2018

    Ahhh neuropathy anyone? Yesterday I had my second dose of first cycle and I’m getting extreme neuropathy in my hands. Not the sharp-shooting painful type but my hands feel like they’re asleep and it’s all I can think about. Does this fade between doses? I didn’t have it at all the first week.

    Teachermom, I love that you love halaven. That’s how I felt about my beloved xeloda. It beats hearing the usual horror stories that we all have. And I have lymphedema too, in both arms!

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Jillts, I really haven’t had much neuropathy. Sometimes I think I’m getting it when I feel tingling, but then the feeling goes away. I will just say be on the watch for it and I would keep a log of when you are feeling it to discuss with your MO. One of the ladies on the “peritoneal carcinomatosis” thread (she has belly mets like me) was on Halaven and had to stop it due to severe neuropathy. I don’t want to scare you, but it can be a serious side effect. Please keep us updated on how you are doing. I hope it clears up really soon. Crazy how we all experience different SEs.

  • jillts
    jillts Member Posts: 12
    edited July 2018

    Thanks, southernsurvivor. When I was on xeloda I had what you describe and it would go away. I am keeping a log and will mention it to my doctor. I know that was one of the two major SE they mentioned up front. Good times!

  • marylark
    marylark Member Posts: 159
    edited July 2018

    amarantha so nice to have a kindred spirit here. I am a coloratura and used to sing Queen of the Night, a lot of the light lyric French repertoire (Lakme, La Fee, etc), and lots of baroque music. I also premiered a bunch of weird contemporary stuff. My first round of cancer made it difficult to sing high Es and Fs, which were always reliable. Oh well. I'm not really singing professionally anymore. I would still love to do one more recital with my favorite pianist before it is all gone. I became a conductor by accident and still enjoy coaching other singers. One of my students is on the way to audition for The Voice next weekend. I think he has a good shot. It has been a joy coaching him (a country singer- I don't know much about country but know how to interpret words so it's been fun translating to a new genre).

  • jillts
    jillts Member Posts: 12
    edited July 2018

    Just wanted to post that my neuropathy that was driving me crazy on Tuesday disappeared the next day. Thank goodness!

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Yea, Jillts! So happy your neuropathy vanished. Great thing is that you have your off week to look forward to. I started my off week today - ahhh, life is so much better on the off week!

    Hugs all -

    Southern 💕

  • kriet33
    kriet33 Member Posts: 21
    edited July 2018

    Good morning everyone! I have been absent for a few weeks. I had to postpone my Halaven for a couple of weeks due to, of all things, Appendicitis! Very unexpected. Had to got to the ER with uncontrollable shaking/ chills and pain. Took about three weeks to recover from that. But now I am back. Started my second round of Halaven last Friday. Today is my second dose for round two. It was nice to have a little break from chemo, but it also made me a little nervous.

    Just wanted to check in with an update. Hope you all are having a good day with manageable side effects.

    --Liz (kriet33)

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Liz, thanks so much for updating us! I'm sure that was scary. Appendicitis of all things - ugh! I'm glad that is behind you, you are recovered and back to the Halaven routine. Always unsettling to us when we are off chemo for a bit but actually probably does our bodies good to heal and recover from the toxins. Hope your chemo goes well today.

    Take care!

    Southern (Sheri)

  • ann1999
    ann1999 Member Posts: 88
    edited July 2018

    Good to hear from you Liz. Sorry u had to go through that. Us BC patients should get a pass on all other medical issues! Glad u are doing better

  • jillts
    jillts Member Posts: 12
    edited July 2018

    Thanks SS, yes, I'm looking forward to my first off week. Today is day 5 of second week/dose and I am extreeeeeemely fatigued. I'm praying I'll feel almost normal next week. By the weekend last week I was feeling pretty good so I hope next week will be even better.

    Liz, oh my gosh, I can't imagine going through appendicitis on top of everything else! Glad you are feeling better.

  • ann1999
    ann1999 Member Posts: 88
    edited July 2018

    jillts- hope that energy level gets better. Mine never did so along with several other bad SE had a dose adjustment which really helped make the treatment tolerable. I do love the week off for sure

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited July 2018

    I am just going to jump in.... I tried to read this entire thread... but all those names. Those names that I remember so very well, who are no longer with us. I simply couldn't. I moved away from these boards last August; needed to have some separation, but new progression, new protocol. It is time for me to see if there is still a place for me here.

    I have been doing this for a long time. I am lucky. I am still here. But, with each new drug, it becomes harder and they say I still have a Low Tumor Load!!! I can only imagine what a High Tumor Load might be.

    I am actually taking the Eribulin as part of a Phase II study. Since I was randomized into the B arm, I am not getting the Pembrolizumab. I started Cycle 1 on Tuesday. Day 2 and 3 were normal, but I woke at midnight in great pain. Upper abdomen felt like it was being pulled like a rubber band, while my ribs throbbed. Never felt anything like it before. I do have tumors in that rib, so perhaps it was a flare? Maybe someone kicked me and I didn't notice? I have no idea. Otherwise, my digestive system is trying to find its new normal. My neuropathy in my feet has chanced, and I am adding the palms of my hands.

    Tomorrow morning I will do it again.

    Any tips appreciated, of course.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited July 2018

    Blood work today was strangely normal, so week 2 of cycle 1 was given. The time for treatment is so short, but the waiting for blood work, the pharmacy, and the research nurse to arrive makes the morning seem just as long as my taxol visits.

  • Teachermom2
    Teachermom2 Member Posts: 56
    edited July 2018

    Hi All,

    Looks like Halaven run might be ending already ;-( tumor markers rose again and since they are always a spot on indicator my Onc is uncomfortable. Going for a Cat scan today, bad timing, we leave on Saturday for vacation for a little over two weeks. So I got treated yesterday, had them do full dose( we had been giving a lower dose bc of neurapothy) but my Onc agreed that at least it may be slowing progression down...ugh. We are headed to Europe, so he wouldn’t start me on anything new prior to leaving anyway and I was too uncomfortable stopping and having NOTHING and going for this long. I HATE this and it’s cruel timing.

    Guess now I wait and pray the scans are not too bad...I don’t want to have to cut this trip short.

    Cancer F’in SUCKS! Hope you all are having better days!!


  • ann1999
    ann1999 Member Posts: 88
    edited July 2018

    Oh crap Teachermom- terrible timing for you! Can u get the scan results right away or at least before you go on vacation - if u want?Praying for good scan results!!!

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited July 2018

    Teachermom, So sorry to hear about your progression.... that is what brings me to this thread actually, so I know how disappointing it is. Enjoy your trip to Europe. Try to leave your cares in NY.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Hi all-

    Welcome Susan - glad you found us. You have been “doing” BC a long time! You are right. The treatment is short but I find the waiting to get it is always long..... My experience is Days 3 & 4 are the worst. After the first few days of a cycle, I tend to have the big D most of the time. Not a constant burden, but when I do go it’s loose. I take Imodium when I need to and it works well for me. On July 20, I will have been on Halaven 1 year. I’m definitely more tired/run down than at the beginning. Of course, it has taken a toll just like all treatments.

    Teachermom, I’m so sorry you are leaving Halaven as I know you “liked” it. We will miss you. It is definitely easier for me than some chemos but the longer it goes on, I feel it more. It is crappy timing for you but I hope you can enjoy your vacation and try not to worry. Easier said than done, I know. 💕

    Well, chemo tomorrow and we will see what my TMs look like. I went for bloodwork today as I have my MO (really PA - that is another story) appointment and want all my numbers when I see him. I noticed they were only drawing 2 tubes. I told her to draw a third tube for TMs. Then I had to go get the front desk to call MO’s nurse to put in an order for TMs to be run. Really?? Do I have to do everything? The answer is yes - we have to be so diligent as the proverbial ball seems to get dropped a LOT.

    Waving hello to Ann, Liz, jillts, and marylark! Sorry if I missed anyone still here - my memory is not so good these days.

    ❤️ Souther

  • Teachermom2
    Teachermom2 Member Posts: 56
    edited July 2018

    UGH!! The mind games this disease plays! So my stat cat scan my MO was not displeased with...there is no evidence of new disease..phew! And two lesions continue to shrink...just one pesky little bugger looks uncertain, but he says it is tiny and to go and enjoy the trip. So yes I am excited, but I am also EXHAUSTED from the worry and stress of the past few days. I will have a PET the minute I get back and he says that will really tell whether I need to make a change.

    I hope you all are feeling well!!

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Teachermom - happy for your results! I know it’s a lot of stress but at least your mind can be more at peace during your wonderful vacation. You are right - this stuff is totally exhausting.

    Quick update to all: TMs went up again another 31 points after 32 points last cycle. Appears Halaven may have run its course. I’ll hopefully do a CT scan next week to see what’s going on. Also, calling Mayo to schedule for a second opinion and to get some tumor samples taken, which I probably can’t get in until late August. No rest for the weary.

    Hope everyone can enjoy today and the upcoming weekend.

  • Teachermom2
    Teachermom2 Member Posts: 56
    edited July 2018

    Southern keep the faith!! I was braced for the worst and was shocked that the Grim Reeper was backing off for a bit. Maybe yours too is not enough to leave Halaven yet, tumor markers seem to play games. Although my Halaven fate is still uncertain..I am holding out hope.

    Keep us posted. Sending big hugs💕 stay strong

  • ann1999
    ann1999 Member Posts: 88
    edited July 2018

    Teachermom - so happy for u. Enjoy every second of your vacation.

    Southernsurvivor- hope everything is stable. If u tell Mayo U want them to do the biopsy it may expedite everything. That’s what I did and I got an appointment the following week. I also wish I would have been scanned there initially as I think they have better machines or maybe it was a better radiologist. Wishing u the best.

    Hi Susan - day 2-4 are worst for me - severe fatigue, nausea- just yukky feeling. Wishing the best for u.

    Hope everyone is having a good day. Having my 2nd Halaven “push” of cycle 3.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2018

    Hi all -

    Checking in on Day 4. I have decided that Day 3 is the worst! Stayed in bed ALL DAY yesterday. Didn’t even want to move to the couch. Just didn’t feel well in general - no specific pain or nausea - but had no energy, no appetite, and felt rotten. So annoying. Today has been better, but not well enough to really do anything. I have been on the couch and did 2 loads of laundry. That is it. I think I feel the effects of Halaven more now that I’ve been on it so long. I know it’s easier than many chemos, so I guess I should feel “lucky” at this point??!!

    Anyway, just needed to vent a bit and I knew y’all would get it. How is everyone else faring this weekend?

    I’m looking for a better tomorrow! 💕


  • ann1999
    ann1999 Member Posts: 88
    edited July 2018

    Southernsurvivor- it’s my day 3 - post 2nd treatment of 3rd cycle and I find it hard too. Can relate to that overall heavy fatigue that sent me to bed for a four hour nap and overall feeling of chemo in my body. Didn’t get anything done today either. However will be glad if it is working and hoping it’s still working for u too.Hope u were able to get an appointment at mayo.

    Thinking of everyone.

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