Halaven - Day 1
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Even though the infusion is only a five-minute push, you need to ice longer than that. They recommended to me that I ice for at least 15 minutes before the push and at least 15 minutes after. Just icing during the push will accomplish nothing. You need those blood vessels to be thoroughly chilly and contracted.
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Lulubee, thanks for that. My nurses are usually busy so it takes a few minutes from the time I sit down before they come over to hook up my port and then waiting for the meds. I’m having blood drawn this next appointment so that will give me an extra few minutes. They don’t request the meds from the pharmacy until I’m in the chair. I was hoping to avoid the cold socks because it’s cold out and the chemo room is cold.
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My nurses hold the meds until my gels have been on for 15 minutes.
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I have a question - I put everything on calendar so anyone can see what’s going on. In the info they gave me on Halaven it’s says the nadir is approximately 13 days. Is that 13 days from the first infusion or second one in a cycle? I put this on the calendar so we can plan around activities. I also have to do leukine shots for three days after and I get blood drawn two days before so I’m in that office 5 days a week when when I have those infusions.
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Stinky feet? I have competition in this house! Can’t wait for summer! I knit and crochet and bake so hoping to keep the feelings up and the tingling down.
A friend on Twitter said her oncology nurse recommended l-glutamine so I’m trying that too. It’s an amino acid so doesn’t interfere. I couldn’t find any information about antioxidants with Halaven. I couldn’t take my good vitamins with abraxane and had to eat gummy vitamins.
Has anyone had to avoid something because it interacts with the Halaven? I couldn’t find anything except ibuprofen but actual experience tells a lot
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Wanderingneedle, they mean the end of the second week. If the beginning of the cycle is Day 1 you count from there.
Interesting that someone said Day 13. I find that Day 10-12 (maybe 13) are the problem children. Day 14 (today!!) I feel myself coming back up. I would bet it is different for everyone.
Where'd you read about avoiding ibuprofen? That's my pain reliever of choice. And weekends @ 4:00pm I need it. Everything starts aching. I can practically set my alarm to it. But ibuprofen is a wonder drug so far as I'm concerned. I'd hate to have to give it up.
I'm taking B-vitamins on a 'can't hurt might help' basis. My fingertips are a little numb -- I'm hoping they'll come back this coming week.
Ouch on your having to go to the office for 5 days. Would they let you give yourself the shots at home? Would you even want to? Back in my old ACT days the specialty pharmacy shipped me the preloaded syringes. I just kept them in the fridge until I needed them.
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Pajim, my nurse gives me a printout from chemocare.com for each treatment I’ve been on. It’s not all-inclusive so I look in other places but haven’t found anything yet. Ibuprofen is a blood thinner and it’s avoided with lots of meds, almost everything I’ve had except Ibrance. An occasional dose will probably be okay but I liked using it daily.
I had my first dose today and will have to try to track my se’s and figure out what comes from zometa, faslodex and Halaven. I watch my one granddaughter after school every day and my disabled son lives with us and his wife is divorcing him and we have both granddaughters every other weekend. My husband still works and drives 1 1/2 hours each way and he helps where he can but time is sure in short supply! Being able to plan around low days would help a lot.
My vitamins have things like green tea extract and blueberry extract and high dose vitamins A and C and others. The doctor didn’t approve with the abraxane so I’ll have to ask about the Halaven since I can’t find anything.
I don’t know anything about giving shots but I’m a good patient
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Wow! That's a lot! I work full-time but that's nothing like chasing after grandchildren!!! I get to sit at a desk or in meetings most of the time.
Faslodex will give you what's euphamistically known as "menopausal symptoms". Hot flushes, dried out skin, stuff like that. SOme people get bone aches from Zometa but the only last a day or two. I didn't have any SEs from Zometa.
But yes, take notes. I would assume we get the same SEs at the same time. That's what it feels like to me. After 3 cycles I'm starting to get the hang of it.
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Well, it looks like I am moving on to Verzenio/Faslodex. Halaven kept my bone mets stable for 6 months, but I now have a teeny tiny spot on my liver.
I will stay on this thread a few weeks longer in case I can help anyone in any way.
I sure would like to see susan_02143 pop in. It's been too long since she posted and I'm worried.
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I've been wondering about susan_02143 as well, I sent her a private message and haven't heard back.
Well, I've been so discouraged I haven't been able to post for a while (or don't recall posting). I was on Keytruda and Halaven from June-Dec. with several months off due to autoimmune toxicities. First break was Aug. with acute kidney injury that responded very quickly with high dose steriods. When I was able to get the prednisone down to under 10mg (10 weeks) I was able to restart the trial (after seeing super specialist at Dana Farber). Then I was on until Dec. and developed grade 2 colitis, which again quickly resolved with steriods. An earlier CT in Aug. showed liver met resolving and no others. At this point while off in OCT, I had a CT and they found "soft tissue mets" in abd and chest. Found one lymph node that was removed for biospy on my upper medial arm, within 2-3 weeks saw it grow from slight questionable area to ~1 cm. Was taken off trial and am now getting Gem/Carb and other lymph nodes I could feel growing have now almost disappeared. This treatment is harder than the keytruda and halaven!
Will cross post.
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Lulubee, KPW, I'm sorry for the progression. I did Verzenio/Faslodex but it didn't work for me. Keep the Immodium handy but remember that it causes problems of its own. In the end I decided that Immodium was the root of all evil.
Crap that Gemzar/Carboplatin is so hard. I have heard that the platinum drugs are just hard to deal with. I always felt bad for the HER2+ ladies who get it as initial therapy for a while.
I too have PMed Susan. She lives near me but we don't come to the cancer center on the same day.
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Does anyone take something to build white blood cells? I’m on Leukine which is a shot for three days after chemo. The bone pain from the first set of shots was intense. I’m also taking l-glutamine for neuropathy along with the cold socks. I can feel that my tumor has started to shrink but I think it’s from the faslodex since I started it a month ago and I ohad my second dose of Halaven yesterday.
Lulubee and KPW so sorry to hear about your progression. I understand that feeling of disappointment and moving on to a possibly harsher and more unforgiving treatment. I hope you both do well and get a good stretch of time from the new meds. 🤗 Hugs to you both.
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Looks like it's you and me. LOL.
i don't take anything for my white cells. Whenever I show up to get chemo my neutrophils are normal. I can tell they aren't normal during the week but that doesn't seem to matter.
Glad to hear your tumor is shrinking. My TMs are falling like a stone but since I don't have symptoms I don't know how much improvement I have. We're hopeful.
I think I have this stuff figured out. Day 4 is the worst (as pointed out by others). But my fingers come back. Not all the way back, but back. I get the chills and the aches and the taste bud destruction but only over the weekend. Tomorrow is another day.
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My neutrophils fell quite low in my first cycle. During the next I started taking a reshi mushroom supplement which was recommended to me be a nutritionist when I was on Ibrance. They have not fallen into the low end of normal for my 2nd and 3rd cycle.0
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Liwi, that’s interesting. My doctor won’t let me take any antioxidants because they interfere with the process of chemo. No green tea, no vitamins with antioxidant ingredients.
Pajim, I don’t think my numbers are that low and they started me on this at the same time I started Halaven. Maybe it’s preventative to keep me able to stay chemo. He knows there’s a lot going on in my household and that I have to keep going. My tumor grows quickly (it’s big enough to see) when the meds stop working so we don’t want to stop it for something like low blood cell counts! MO said it’s the Halaven working because faslodex usually takes 6-8 weeks to show a difference. I’m hoping my achiness goes away during this week off. Don’t know which pain belongs to which medication but I would sure love for them all to go away. Good for you and tumor markers falling. That’s always a good feeling when the numbers go in the right direction!
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hi Ladies! Just a quick question. My cousin just finished the first cycle, but her condition did not get improved. Actually, her fibrinogen level decreased, I wonder how long it usually take for the medication to kick in
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I suspect it's variable. My tumor markers started dropping immediately (by the end of the first cycle) and have continued to do so. HOWEVER!!! We haven't done a scan yet so I don't know if there is actual improvement in my cancer. We assume so but no idea.
It's possible that the blood levels of fibrinogen are directly affected somehow by the drug itself, as well as the tumor. Opposite from what the cancer decrease might be. I don't know anything about fibrinogen, but since Halaven affects all sorts of other blood markers. . .
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thanks Pajim! We are waiting to check the other TMs as well. Fibrinogen level happened to drop significantly every time when tumor progressed, so it’s a quite accurate number that we pay very close attention to. BTW, does “by the end of first cycle” mean when it’s close to the end of third week? It was right after her day 8 medication when she found out the drop of fibrinogen level, so I think it’s too early to worry
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Actually when I went in for the first day of the second cycle. They measure that 'stuff' every three weeks.
I would agree it's too early to worry. You're dealing with the effects of the drug too. My first cycle everything tanked. Red count, white count. Liver function tests through the roof. I was sick as a dawg. [I had a cold virus at the same time] But lo, after the week off, everything came back to normal.
My liver function tests still fly up after the first week only to come down by the start of the next cycle so everyone has decided not to worry. My MO feels about LFTs the way you feel about fibrinogen. But I'm working on him.
It's really hard not to worry, isn't it? What's the saying? Don't let tomorrow's trouble ruin today's peace.
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lol! That’s right! Thanks Pajim
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I started my second cycle today. I’ve been noticing extra hairs in my sink so I don’t think I’ll be keeping all of my hair. I lost most of it on the last treatment (abraxane) and have been keeping it close to the skin and wearing a wig. I had a month between treatments and it started to grow back - the dark stuff, not the gray - but wouldn’t you know that’s what’s falling out? LOL! I’m going to see if I keep enough to wear it short without it looking scraggly before I shave it off again. It’s about 1/2 inch and my granddaughter likes to rub it.
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Wandering needle: Did they offer you a head freezer contraption to prevent hair loss ? If you do have a wish to keep your hair, do take the head freezer. I'm being taken off Halaven now and going to Xeloda.
Ironically my hair has chosen this time to fall out all at once. I lost all my hair twice before, the last time was when I was on a stronger dose of Halaven, it began exactly three weeks after the first treatment. Then my hair grew back while I was switched to a different chemo (Cisplatin) in preparation for my second mastectomy, and while waiting to be recovered enough to begin Halaven again. Halaven began again in November 2018, this time on a reduced dose, so my hair did not even think about falling out, or so I thought. The nurses even offered me a head-freezer contraption last time, and I refused, thinking there was no need.
Well my last treatment was the 28th of February. Here we are March 20 - I guess that is exactly three weeks later. Now look what happened. Sigh. And all my pretty chocolate shoulder length hair is now hoping to make a bird nest in the garden. Upstairs in a box somewhere, I have what was once a wonderful very expensive (synthetic) wig, unfortunately it is now all ratted and not at all what it was supposed to be. Gack.
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Amarantha, not the last treatment! What a bummer! I do get tired of wearing my wig sometimes but it keeps people from staring. I like to stay under the radar. I take my granddaughters to school and kids stare. It helps me be less noticeable. The girls were curious in the beginning but now it’s no big deal. The youngest likes to rub my head. My cancer clinic is small and doesn’t offer the cold caps. I take my own cold socks to help prevent neuropathy.
I hope you have a long time with the Xeloda and many years of no side effects!
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Checking in to see how everyone is doing? I have caught a cold which has put me down for the count again. Halaven is not compatible with colds. Luckily I have until Wednesday to recover.
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Sorry you caught a cold! Spring is just starting - could it be allergies?
I finished my 2nd cycle Wednesday. Just starting to feel a little nauseous today. I had a bad reaction last week to the leukine shots so they switched me Nivestym and I’m hoping these don’t cause any problems. I have too much to do! I don’t think my side effects from Halaven have been too bad but it’s hard to tell with the problems I had with the shots. Granddaughters are at our house this weekend so hope I get through it okay.
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Actually I can't tell what it is? But it's triple the runny nose and cough I usually get from Halaven, and it's taking longer to 'recover' from the Halaven dose.
So I assume it's a virus. At least I hope so. Stayed home from work today and got my afternoon nap in.
Sorry you're having so much trouble with the shots. Have fun with your granddaughters! I can't imagine how much energy you need in order to handle this. I'd collapse by noon.
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Hopefully a weekend of rest will take care of it! A day off of work is always in order!
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hi all! Well here comes a newbie. I'm joining the halaven group for what I hope is a long damned time. Don't we all!
Here is my brief history. I just had my 3 year cancerversary march 25. Isn't that something to celebrate! I'm er+ pr - and her2 -. I started on ibrance/ femara and got a good 18 months till whamo, liver mets. I tried a short bit of Xeloda and then abraxane and neither did all that much. I just completed 7 rounds of ac chemo and have about 7% heart damage from it. Some of my liver mets shrunk and some grew a bit. This leads me to halaven.
I had my first dose today. It was a small Iv bag full. Does anyone else get it that way? I also had premeds for nausea only. I started l-glutamine for the neuropathy on Sunday. I also had my Lupron shot today.
So far I'd say i have waves of tired, I feel great, tired I feel good. Liver all of a sudden feels achey a bit. I had two spells in different spots where I felt like a needle was just poking away at me. I am sure I'll get the stupid mouth sores bc I did on ac every stinking time.
I had two weeks off chemo from ac to halaven. My daughter was on spring break so we went to Colorado to see my son. My tumor marker, ca27.29, were 44 when I left and 47 today. Not to bad compared to some I've seen here. Of course the break raised all my liver bloodwork as well, ast, alp, alt. I did expect that.
Grr I am hoping for more side effects! Who hopes that right? I have read that it seems chemo is working when you have side effects. I know it's early and any input on that would be good.
Any other tips or info from anyone? I started from page one of this thread on vaca so kept leaving and only am to page 61 so far.
Thanks so much,
SarAh
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Hi, Sarah,
Hope you get a good response! I have only had two cycles but my tumor has shrunk more than on any other treatment. Abraxane didn’t do anything but make my hair fall out. My tumor marker CA 15-3 has dropped to its lowest ever. I use cold socks for neuropathy and also take l-glutamine. I have a little nausea but nothing bad. I take Nivestym shots for three days after treatments. It’s a colony stimulating factor for white blood cells. If I didn’t have to go back for shots I wouldn’t mind the treatment as much. Always remember to eat well when you can and take vitamins and drink lots of water.
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Sarah, welcome!
You shouldn't get mouth sores. I got them the first cycle and my MO told me it was not at all usual. I'd had a cold at the same time. Never had the mouth sores again.
Grrr. on the heart damage.
Interesting about the small iv bag. Mine comes in a syringe. The nurses put saline up and inject the Halaven into the i.v. line. In fact I'm off in 30 minutes for the beginning of cycle 6.
My TMs are approaching normal range. It's the lowest they've been in a couple of years. I haven't had a scan but we assume this stuff is working. The NP told me that whilst 30-40% of women respond (and another 30% get stable disease), those who respond do so for a long time. Raising my hand to hope that is me.
Once you get the hang of it this isn't bad. It IS full of minor annoyances, at least for me, but no major annoyances. Except what I call the Monday surprises. But that may never happen to you. We are all different.
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