Halaven - Day 1
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Teachermom - I’m bummed for you. Hate to see u leave this thread! Hope Doxil is kind to you and you have great success with it.
Susan - glad u are able to enjoy that milestone with your daughter! The week off makes Halavendoable for me!
Hugs to all!
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It looks like my liver mets are responding to the Halaven and Keytruda, I just got a call from the nurses with a preliminary report. I'm very relieved to receive the news.
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KPW3- FANTASTIC news! Sooo happy it is working for you!
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KPW3. Stellar news!!
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Hi ladies, I recognize a lot of you from other threads. Please forgive me if you see this cross-posted on the Abemaciclib Verzenio thread. I just got news of progression and my onc has given me a choice of Halaven OR Abemaciclib + Arimidex. Any thoughts? Pros and cons?
As you can see from my epic bio below, this is my 6th progression in 8 years at Stage IV. I got 20 months out of weekly Taxol. Not easy-- it snatched me bald, wore me out, and jacked up my feet and fingertips--but it did the job for a good while and I am thankful for that.
My onc first mentioned Halaven, but it would be nice to walk away from the chemo chair for a bit, and also Abemaciclib would give my hands and feet a chance to recover. But then... another AI... groan. How I hate those things. I've had all of them except this next one, Arimidex. After 8 years, I think I would commit a felony for a jigger of estrogen.
Any thoughts on the side effect profiles, Halaven vs. Abema? Thanks for any insights.
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Lulubee,
I do have thoughts, but right now me and my pathetic hands are preparing food for a reception for my daughter's Doctoral Colloquium while waiting for the grandchild who we will take with us. If I don't answer back this evening, send me a message to remind me.....
susan
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Lulubee - I’ve had four cycles of Halaven which I was switched to after being on Ibrance/Faslodex for three months. The IF was working but not good enough - progression in liver so wanted to get it under control. SE of Halaven for me included fatigue++, bone pain, SOB, nausea/GI upset, little appetite, dry mouth, hair loss with cold capping and the general overall crappy chemo feeling. No neuropathy though. Symptoms were worse in the beginning and have simmered down a little. Many others here seem to have a better time with it though so don’t want to discourage u. I haven’t been on Abemaciclib but taking a serious look at it after this one - mono therapy or paired. I understand the Al “groan” - they weren’t easy for me either.
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My wife has had a terrible time with Halaven SE's, much more than when she was on Xeloda. Any advice from you ladies about what to take for her terrible stomach cramps?
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Well, darn folks. My latest scan shows my tumor has grown a bit on Halaven, so off to a new chemo for me. No new growths, so good news, I guess. I am bummed that this one didn't work for me, and also bummed to be leaving you fine people for a different forum. I will check in now and again to see how everyone is doing. I haven't looked yet, but I am hoping we have a Gemzar community here...? That is my next chemo. Anyone heard anything about Gemzar? Fingers crossed it will be the right one for me. 😊
Hope you all have a great weekend.
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Kriet33,
You've only been on Halaven since May 30, right? And you had to take how many weeks off for the appendicitis? How many treatments in total have you received?
I'm asking because maybe you should discuss with your MO giving this drug a little more opportunity to work. Most of the time for cytoxic chemotherapy, I've been told to give it a full three months of treatment. Sometimes tumor flare or necrosis can make the mass image bigger, so you've got to look at other indications, like the SUV value of the mass. Tumor flare can also increase TMs.
I'm sure your MO is clever and good, but maybe they have forgotten that you were off treatment for a while?
I'm heavily pretreated, so I don't have a huge quiver of chemo left. My instinct is to hold on with grabby little fingers to any drug that looks like it might be doing something. Point is - I'm biased.
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Blainejennifer - yes, I have not been on Halaven that long. Only three cycles, with the break in the middle for the appendix. We talked about doing another round briefly, but the oncologist seemed determined to switch to the Gemzar. It might be worth a call back, to get their reasoning behind that decision. If only to reassure myself.
Thank you for your input. 😊
Update:. I have a call back to my oncologist - hoping to hear back soon. 👍🏼
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Goody. Quiz them about SUV uptake and actual growth. More than two or three centimeters is worrisome, depending on the original size of the lesions (says the lady with an 8 cm lesion).
Halaven is just such a damn good drug, and performs better than "Doctor's Choice" in pre-treated women. Unless, of course, it doesn't.
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Just got off the phone with the nurse. She spoke with my doctor and they still want to go with the Gemzar. My tumor grew from 2 to 3 cm in approximately a 3 month span of time. Apparently that is too much to consider staying on the Halaven. We have pretty great cancer doctor's here (Illinois), so I feel I can trust their judgement. If I was in another state (for instance, I have a family member in a different state where the healthcare is, in my opinion, sub par), I might not be so trusting.
For now, I will try the Gemzar. Please do not hesitate to give me all the advice you have. I need all the info I can get. I want to get every last drop of effectiveness out of these drugs as possible before giving up on them.
Thank you for your help blainejennifer. ❤️
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Liz- no new growth is good news but darn it on the progresssion on other one/s.Previously you had thought about IR or some treatment for the liver met..still thinking about it? I am. Hoping this chemo will shrink things and I can then go for IR consult. Some ladies seem to be having great results with local treatment. Glad u will keep checking in but will also probably see u on other threads too.
Mike - sorry haven’t experienced severe stomach cramping. Could be due to several things. I’d talk with the doctor...
Thinking of everyone
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Ann1999 - they said that, if the tumor shrank enough, say 1cm or so, then they could go in and zap it. If they tried that now, with the 3 cm tumor, it would be too much for the liver to handle. It might also have something to do with where the tumor is located (segment IV).
Mike - I had some stomach pain after my first infusion of Halaven. Turns out the culprit was the anti nausea medicine that they gave me with the infusion (Aloxi). I switched to zofran in pill form, and that seemed to take care of it. Not sure if your wife is suffering from the same, but it's worth a thought. I hope she gets some relief. That pain was terrible.
Wishing a good weekend for all. I haven't found a forum for Gemzar, so I will be around.
--Liz
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Thanks kriet33. Her stomach pain is well after her infusion. She's been on her "free week" and it's still bad. My wife was ER/PR+ but it turned triple negative when she was taking Xeloda. She has extensive spinal mets now. Ray of hope though, since the cancer was eating away at her spine her calcium levels have been quit high. After the second infusion of Halaven her calcium levels crashed and are now within acceptable levels. We won't know for sure until her PET scan in mid September.
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Mike - that sounds promising. Fingers crossed for you and your wife. I hate this rollercoaster, but it is nice to have this community where we can support each other, get advice and otherwise share our experiences.
--Liz
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Mike: Buscopan with pain relief is my go to drug for an unhappy tummy plus very strong probiotic 2 to 3 times daily regularly.
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This is the first day in a long time [several months] that I feel normal. I mean my feet are numb and my fingers are tingling, but I have energy. I didn't need a nap. I made a dinner with five components and it was good! Today I made granola and a dress for my granddaughter. Would that every day could be this good.
You guessed it. Tomorrow is week 1 of cycle 3. I will be knocked back once again. I am going to remember this day and strive to have one just like it in three weeks!
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Do any of you ice your hands and feet during infusions? Or is that not suggested for Halaven?
And do any of you get Halaven without pre-meds?
Still trying to decide between H and Verzenio + AI. Have to decide tomorrow
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I do not ice my hands or feet during the 3-minute infusion/push. I do not get any pre-meds. [I think I have told you this privately, but my brain is mush and I might have meant to tel you and not actually done so.]
*susan*
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lulubee- I don’t ice and it hasn’t been recommended by the nurses or doctors. The IV push lasts about 3-4 minutes only. I get Zophran for nausea as a premed.
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My sister started Halaven yesterday. I iced her hands and feet during the infusion and she sucked ice to prevent mouth sores. The nurse said it wasn't necessary. We did it on Taxol though and figured it couldn't hurt. She also iced her hands and feet for an hour after she got home. She didn't get any premeds, but did get a post-infusion to "clear it out". Whole session took 45 minutes. Took 8 days to find an empty chair in the chemo suite to get a 45 minute treatment :-(
PS We're new to this thread but have been on other threads over the last 10 years, the liver mets threads most recently when she was on Xeloda. We've gotten so much help over the years from ShetlandPony, LindaE54 (now an angel), and others. I read her the posts so she can learn about whatever treatment she's starting on from the people here who know. She has me read them to her so I can filter out anything scary so she can keep her head calm.
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Thanks for the responses, Irish and Ann and Susan.
And Susan, you did tell me both of these things in PM (maybe your brain is not so mushy after all?!) but I then wondered if things are done differently elsewhere. You know how tired I am of icing after 20 months, and I am seriously done with steroids and Benadryl. UGH.
I think I am leaning toward Halaven now which surprises me because I was leaning hard toward Verzenio last week when I first got the progression news. But I've done treatments every which way by now-- daily oral meds with no break ever, oral meds pulsed every other week, meds injected once a month (faslodex), and now 20 months of weekly IV chemo with one week off per month. Bottom line for me: even though I loathe having the trip to the hospital on my calendar every week and certainly don't love being bald, I think overall I hold up better mentally when I know I have a week off to look forward to. Plus I always turn into a stiff 90-year-old crone when I am on an AI, and my onc wants to pair one with Verzenio. So there's that.
So... here we go. I guess maybe I'm joining you gals here on the Halaven crew come Monday?
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Lulubee- sending positive thoughts as u make your decision. Sometimes I feel we are throwing the dart hoping to hit the bullseye with blinders on. Someone’s gotta fix this. The last time my MO asked if I wanted to go on halaven or another chemo- I looked at him dumbfounded and said - Well which one is gonna work AND work the best..I won’t go into what he said - my BP goes up🤨. Maybe knowing you may get scanned sooner being on the halaven and that the verzenio may take longer to show results - helps. (Sorry don’t know if u go by TMs or scans for trmnt changes). And the week off is good!! I’m watching and waiting to see some results of the lobular, aurora kinases and PIK3 trials.
Susan- thinking of u as you are in the depths of cycle 3. You got this!!!
Hi Irishtwin - welcome to you and your sister. Halaven is doable- I can say that now after having done four cycles and a dose reduction. Hoping it treats you kindly and is a great success for you!!
Hugs to everyone!
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Hi All!
Hope everyone is feeling well. I started Doxillast Friday and so far so good... we will see. Not sure when the side effects really start kicking in. It is nice to have ditched the caps! But now I am icing hands, feet and mouth...it never ends.
Southern...you have been on my mind. I hope you are feeling well and getting some answers for you next step. The waiting sucks and although a break from chemo must be wonderful, I know the mind games that brings too. My fingers and toes are crossed for you!💕
Have a great weekend everyone
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Hello all. A happy rainy Friday to you all. Previously on Halaven, now is my first dose of Gemzar. I haven't found a Gemzar community yet, so you all are stuck with me.
Thinking of you all and wishing good results for all of us. ❤️
--Liz
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Hi Liz and Teachermom- goodto hear from you ladies. Hoping for long successful treatments for you both!
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Liz, stick around! I just got here! I figure we all need to know about Gemzar also
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Hi Liz, Lulu, Ann, Teacher, Southern, Tenille and Mike,
I hope things are going well. Liz I am glad you are staying. Your humour in bleak circumstances is a real boost. I hope the Gemzar works for you. Teacher I hope your new treatment works! We are hoping to get something like the time you and Southern got on Halaven!
We are off to a bumpy start, although not due to Halaven's SE's which so far has been very manageable, just fatigue. Mike, could your wife's stomach symptoms be something else beside side effects of Halaven? Are they checking her out?
The week before Halaven my sister developed a headache on the right side of the back of her head and a swollen tongue that wouldn't move right. She attributed the effects to a higher dose of hydromorphone for her back pain, and we spoke to her family doctor about it who told her to take Advil and Benadryl (which didn't work). However, a day later I asked to see her swollen tongue, and when she stuck it out it deviated sharply to the right side instead of coming out straight.
Thanks to some on-line articles and LindaE54's posts from a year ago on swollen tongue and headache, it seemed like her hypoglossal (tongue) nerve was being affected by metastases to C1 or the base of her skull. Also, thanks to Linda, I knew that if it weren't treated right away it could be irreversible (it was in Linda's case because they took 2 months to diagnose it!). We called the on-call oncologist who said it probably wasn't a rush but she could go to Emergency if her face started to droop on one side :-(
We went to Emerg that night (wanting to precede any drooping) and the docs there said it could be because of the new tumour near her ear, or a bleed in her brain so ordered a CT. My sister suggested to them it could also be occipital condyle syndrome, the official name for the combined symptoms of a sharp pain on one side of your head and your tongue deviating to the same side when it sticks out. They had never heard of it at Emerg but googled it. It happens most frequently in people with breast or prostate cancer and bone metastases, and usually means new metastases to the base of the skull, although can also be caused by leptomingeal disease or a brainstem tumour. They ordered an MRI when the CT showed nothing, and it turns out she does have new metastases to the base of her skull affecting her hypoglossal nerve, so they are stopping Halaven for now to start radiation, hoping to prevent the nerve damage from getting worse.
I wanted to post about this here because LindaE54's thread was the only reference I could find to these symptoms on this site and I don't think she and my sister can be the only ones on this site who this has happened to.
Anyway, my sister is hanging in there, eating yogurt and soup so she doesn't injure her numb tongue, and taking steroids to reduce the nerve inflammation till the start of radiation.
Thinking of you all, and hoping to be back on the Halaven bandwagon soon!
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