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Halaven - Day 1

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Comments

  • stagefree
    stagefree Member Posts: 360
    edited June 2017

    hi all,

    Will meet MO next week to schedule my first Halaven infusion, so mo 2 cents yet. All I can say for now is that she is moving on to this right after two huge doses of Taxotere, having avoidrd Gemzar in my current skyhigh TMs (3000s).. so I presume this IS another big gun, given in high doses. Cling, I'll definitely check out the supplements you mentioned. Nan, I'd go for shortcut wig, not to risk it the last minute, as I do remember maybe Susan saying having lost most hair than she did on Taxol...

    hugs all

    Ebr

  • cling
    cling Member Posts: 263
    edited June 2017

    Nan812: I am sorry that you fell tired and bone weary. That must be from the lingering SE of gamma knife. Hang in there. Halaven should be easier.

    My third (off) week on Halaven is really easy. Feel almost back to normal. My hair starts falling off but unlike under CT before, right on 14th days chunks of hair showed up everywhere. This time hair fell in small strands. One nurse told me Halaven will thin out hair but may not go completely bald. My wig is ready, but I am not shaving first. Monday will start my second round of shot, still working full time. Chemo Brian did sink in but manageable. I made sure that I walk 20-30 minutes each day to counter the fatigue. I learned from BCO board, exercises help raising blood counts, I think it really works. My blood test prior to second Halaven shot was in normal range, and each time after even just 10 minutes walk, I feel better than before.

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    hi cling and free...thank you...im not sure of the cause (gamma or chemo) but my head is so tender that a wig was impossible to wear longer than a half hour....it somehow feels wrong to keep taking it off then sneeking it back on..(im not fooling anyone)...so last time i went thru it everyone just had to get used to my long blonde hair being gone..i honestly think it was harder on them cuz they were the ones looking at me lol...i have a nice half moon scar right over the top of my forehead (about 7 inches) from my Craniotomy last month and the whole top of my head is so tender still,gamma knife was last week... ive tried those lil stocking caps with no luck...i was thinking about a nice henna design over it lol....i would love to wear some fun wigs if anyone has any ideas on how to make them more comfortable, i would love to hear....ive read that some still keep brows and lashes....that would be so nice...this whole thing is hard enough without having to look so sick on top of it...cling, im a big fan of walking and playing in the dirt in my garden, its nice to know that at least some of the things i enjoy are actually good for me....thankyou again everyone for sharing so freely on these pages...keep shining bright

  • cling
    cling Member Posts: 263
    edited June 2017

    Monday started my second round of Halaven. Saw Onc first and she wanted to have a scan after 3 rounds to determine if Halaven is working. The day after infusion, the stomach started grumbling, small amount of snacks and Pepcid smooth it (PCP told me I can use Pepcid up to 80mg per day) . Try to stay with fresh and bland food, so as not to have an upset stomack. Fatigue is a major problem, but I tried to walk for 5 -10 minutes when I am about to fall asleep during the daytime. Hair is still hanging there but falling in larger quantity than last week, I may have to wear wig in a week. Treatment under Halaven is still tolerable.

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2017

    Hi All

    I will be joining you Wednesday night!!! Hoping this treatment will work

    Babs

  • cling
    cling Member Posts: 263
    edited June 2017

    Babs: Do you know if your center will give you pre-Meds for anti-nauseating? I think those helped me from some SEs. The infusion process is easy. Good luck on your first shot tomorrow.

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    hello.....cling it looks like you and i are close to the same schedule....just got my second on friday...surprised at how quick this one is....se have been easy so far and my hair is still hanging on....i just got the news that the parp inhibitor got approved....it will be 12 pills in the morning and 12 at night and my mo has high hopes for it in combo with the halaven....i hope he is right especially after the fight we had to get it approved....the fda only approved it for ovarian cancer although all the BC gals in the trials did very well, i hope im in that group...wishing you all the best..

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    so the ups guy just brought my parp and i got that dose wrong....dont ya just love chemo brain....its 6 pills am and 6 pills 12 hours later...looks like the only things off limits are grapefruits and their juice and seville oranges, not sure if ive ever had one of those....there are a few things to "tell your doc about" that includes St Johns Wort....i think ill google that unless someone here knows why....OK down the hatch, wish me luck...praying for you all.....OH I forgot to add "dont get pregnant" ...

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2017

    I had my first treatment tonight. It's really fast!!! My only issue was that it's hard to get a vein on me. I hope the SEs are easy and that it knocks the heck out of my bc and everyone else who's on Halaven!!

    Babs

  • cling
    cling Member Posts: 263
    edited June 2017

    Babs: Before I started Halaven, the first thing I requested was to get my port back. In the past two rounds of infusion, it has been so easy without touching the vein on my arm! Consider to get the port back, if you anticipate more chemo treatments. Found this link on BCO threads (3/2017) discussing whether port can be on the same side more than once. Hope it helps.

    https://community.breastcancer.org/forum/69/topics/853608

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2017

    Cling I'm holding out. I hated how the Port looked. And , yes I am vain!

    Babs

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    oh i am right with you babs in the vain dept....i cried when they put mine in....its the strangest thing now i really have to watch what colors i wear because certain greens, purples, and blues will be brought out in the color of the skin over my port....its the ugliest accessory I have ever owned....besides the new scar on top of my head, lol ....lots of hugs to all

  • cling
    cling Member Posts: 263
    edited June 2017

    Up to now, two of Nurse Evan's predictions/ experiences have been correct. He told me that my hair will be thinning out but not necessarily going bald. Five weeks after Halaven I still have enough hair to cover the head. Decide not to shave unless it is absolutely necessary. The second thing he told me is the second week after injection is the worst time because of cumulative effect. My hemoglobin was 8.8 (below 9.0 minimum ) but Onc waived so I got the injection. The 3d and 4th day fatigue hit me so hard, I finally understand why someone here said it is a couch day! Back to normal now and starting the happy "off week. Onc already called to add a b-12 shot to my next injection schedule, so that I won't be so tired.

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    hi cling....i think you are 2 weeks ahead of me and its nice to hear you havent lost all your hair...mine started coming out yesterday and today my body was covered with it while rinsing it in the shower (it was handfuls) i cut it very short last saturday so i cant blame the length for all i see....so i was wondering, did you have a few heavy days then it just tapered off or was it a steady loss?....how bout brows and lashes?....thanks for the info so far.....im going to ask my doc about the b-12.....big ((hugs))

  • cling
    cling Member Posts: 263
    edited June 2017

    Nan: I lost my eye lashes and half of the eye brow after the first chemo 6 years ago (never came back). So this time i did not notice any obvious change in my eye brow. My hair, this time, did not came out in chunks, just steadily coming out every time I comb through hair. I treated hair combing as a major event of the day! Very tender and once a day! I am on the 6th weeks Halaven schedule now, but still have enough hair to cover my head. There is a Chinese proverb describing the hair as "three thousands worry threads", I guess I still have enough worries left.

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    so mine seems to be leaving my head at the same rate as the first time ......pretty steady till its gone...i guess when you can feel it and see it every where it kinda shocks you (well it did me lol) .....always hoped to be a lil luckier ....STUPID CANCER....there, you know maybe I'll just picture the cancer leaving with each hair because I really like what you said about threads of worry , thank you

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017
    Hi all - I'll be joining you all here as I'm starting Halaven on July 20th. (I had a previously planned trip to visit my parents that I didn't want to cancel, so waiting a few weeks to start.). Per my CT scan last week, I have now progressed on Ibrance and Faslodex after 4 months. Pretty disappointed as I did the Guardant360 blood test which said I should have responded well to that combination. I have had mets to the stomach since 2014 and have previously been on Faslodex, Abraxane, Gemzar & Carboplatin, Xeloda, Ibrance & Letrozole, and most recently, Ibrance & Faslodex.

    Honestly, I'm so disappointed going back to IV chemo after 2 years of being on oral chemo/hormonal meds and having my hair back. This will be my 3rd time of hair loss. I have short thinner hair that I have grown to love and appreciate and now it will be gone again. Has anyone thought about doing the cold cap? May not be worth it for me since my hair is thin and if I lose much, I would have to have a wig anyway. Just thought I would ask.

    I would appreciate any tips that you have for being comfortable on this chemo. I do tend to get nausea (I think because if where my mets are) so I will need premeds to prevent that. I will go back a read this entire thread before I start the Halaven to get caught up and gain some additional insight. Also, wondering if anyone has had a long run with this? I've only read the last few pages of posts but seems that those few have just recently started.

    Hugs to all - I look forward to sharing our experiences and supporting each other!
  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    I had my second infusion last night. All is aok thus far. No hair loss yet!!! Next week is an off week. Yeah!!!!!

    Bab

  • cling
    cling Member Posts: 263
    edited July 2017

    The 3rd (off) week of 2d round on Halaven was a real physical vacation. Appetite is back, no digestive tracts revolution. I bought a new iPad Pro as the gift to myself. However, emotionally I went thru the hell because several deaths, hospital stay, and BC diaognosis from close family and friends all happened in a few days. It turned for better as the week progress, now I enjoy the weekend before the infusion on Monday pm. Still losing lots hair everyday, but still covers my head after 6 weeks. I am hopeful.

  • cling
    cling Member Posts: 263
    edited July 2017

    On last Monday treatment, hemoglobin went up to 9.5 and I also got a B-12 shot. The energy level during this week is almost moral, and digestive tracts seem to accept the Halaven better. The whole week I felt good except a bit sleepy today (7th day of chemo).

    Tomorrow I will also get an shot of iron together w Halaven. Hope it will improve my anemia. Hair is going out fast everyday. Ready to get my wig on, but after wash and air dry, hair still covers my head! So, I will give it one more week and see!!

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017

    Cling, Thanks so much for keeping us updated.

    How is everyone else doing on Halaven? I'm trying to mentally prepare before I start on July 20th. It's been 2 years 4 months since I've been on IV chemo and not sure if I'm ready for it again. Ugh



  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    I start my second round this Thursday. No hair loss yet. And feeling good on this. Hope it's working!!!!

    Bab

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017
    That's awesome, babs - so happy you are doing well on this so far.

    Can you all tell me what pre-meds you get for this? Some say steroids (not sure what exactly this prevents) and I know I need anti-nausea. With mets to the stomach, I tend to get nauseous.

    Also, any other tips to try to prevent neuropathy or other side effects?

    Thanks in advance - any info would be appreciated!
  • stagefree
    stagefree Member Posts: 360
    edited July 2017

    hi,

    My application for H is rejected, wtf, anyways still on Taxotruck and Xeloda.. hope to oin you all soon.. good luck to us all with this one.

    Hugs

    Ebr

  • cling
    cling Member Posts: 263
    edited July 2017

    Ebru: hope your appeal for Halaven will come thru soon.

    Southernsurvivor, I am on the chair for IV, the premeds my Onc prescribed are Dexa and Zofran. It is for 20 minutes drip. The saline for 5 minutes then start with Halaven push injection from 2 to 5 minutes, followed with saline flush and close with heparin for my port. Usually 4 hours later I will lose my taste bud for 5 days. I was prescribed with anti-nauseat drugs, never have to use it. As Jennifer mentioned (she has been on Halaven for more than a year) if you can manage anemia, Halaven is very tolerable. Don't be scared, it is not too difficult , and I come to cancer center after working 7 hours in the office.

  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    Southernsurvivor. I am not given anything before or after my infusion other than saline and I don't have any issues. I assume it's too soon for neuropathy but I have started to get cramps in my hands every so often. I've had quite a few chemos and this is easy so far. Hope it stays that way!!!

    Ébru good luck on your appeal!!!!

    Bab

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017
    Ebru, how can they deny this?? Totally unbelievable - lets hope they come to their senses and approve it for you soon!

    Cling, happy to hear you think Halaven is tolerable. Besides the nausea, I think I'm most worried about the neuropathy. (Not counting losing my hair for the 3rd time which I'm really mad about.) You are certainly a trooper - working outside the home and Halaven - WOW!
    Hope my experience is similar to yours so far and can still have a good QOL.

    Hugs to all!
  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017

    Thanks, Bab - I just saw your post. I had written mine previously but apparently didn't post it. So glad Halaven has been easy for you so far. It is so interesting how we all react to these chemos so differently. I've been on many chemosso far too and have done OK on them, so hoping that continues. Nice that we can share our personal experiences- you all have given me much hope that this chemo will still allow me to function!

  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    Southernsurvivor- yes, we all react differently. I found Gemzar the toughest chemo- it drained me like crazy, hurt terribly during the infusion and made me nauseous and queasy. FYI I am still working full time daily.

    Babs

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017
    Babs, I was on Gemzar and Carboplatin together in 2014/2015 and found that very difficult, although I was also on it in a very compromised situation. (On a feeding tube for water and nutrition as duodenum was 100% blocked, so my body was so very weak at the time.) I worked full-time through my 1st cancer treatment 10 years ago. This time when I was diagnosed with mets in 2014, I was working full-time then ended up going to the ER one day as I couldn't keep anything down, and was never able to return to work again. Not a good way to "quit" work. It looks like I've been on all the same chemos as you except for CMF. I have also been on Abraxane (lasted 3 months and didn't work.) Here's praying we get a long time on Halaven!

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