Halaven - Day 1
Comments
-
Sadie, Munroe, Denny, welcome. I hope we're all here for a LOOOONNGGG time!
Latte, Susan, great news! I've also responded well so far based on CA153 and bone/lung symptoms. I could hardly take 100 steps in November, but I had my 3rd cycle/day 8 infusion on Tuesday then hopped on a plane to Vegas! MO mentioned a CT "after a few cycles" but I feel so refreshed, I'm not even going to ask. Part of me wants to read all about the great things going on, but I really just kinda want to let it ride. A day without MO is a good day.
Munroe, hair loss… I hope MO is right in your case, but brace yourself. I was told 35% chance, and well…. Based on my experience and other forums, day 15 seems to be the magic day if it's going to fall. But I've also read of people getting their hair back during treatment. Fingers crossed for both of us! (I'm also a single mom of two; strength, love, peace, and good hair vibes to you.)
Regarding mutations, we haven't biopsied the new lung mets, but from my understanding, it might offer new treatment options. I had a great bone response to Xeloda while the lung mets raged. But I'm responding well to Halaven, so I don't know when we'll do that. What a crazy adventure we're on.
Best wishes to those of you starting soon. Here's to great success with minimal SEs!
0 -
Thanks Pixsie, I hope we will all stay on this thread for a long time.
I have just returned from my first infusion of halaven: drip to clear port, steroid, 10 mins of halaven, then I asked for rest of saline . I was in the hosptal for an hour , which will be shorter in future, as this time they explained the timetable of treatments and blood tests [2 weeks on, 1 week off] ,what they would be checking on and possible side effects. Then booking in next 2 blood tests and treatments and talking with oncology pharmacist who gave me some anti emetics. I feel a bit 'odd' now, but that could be psychosomatic , a new treatment is a step into the unknown, which I find stressful.
Good luck, Sadiesservant, with your first round of halaven.
0 -
Sadiesservant and Denny,
Hoping Halaven will work for both of you without side effects!
Hugs, Susan
0 -
Thanks All. At this point, I'm just hoping to make it to my appointment! LOL. We had a big dump of snow last night which threw a wrench into my schedule for bloodwork. No way I could drive. I know folks from the East Coast laugh at us in Victoria but our snow is horrible slushy stuff most of the time which makes for slippery driving conditions. Plus, we get so little snow that it's hard to justify snow tires. I normally just work from home or call it a snow day when the occasional snow flake falls. Hopefully it will be gone by tomorrow as they are predicting rain.
I find it interesting the difference between centres in how they manage the premeds. I don't think they will give me a steroid although I have had it with some treatments. I've also had them give me benadryl in the past for other treatments. Hoping that's not the case here as it always puts me to sleep. I guess there is nothing to do but wait and see. Like you Denny, I expect that it will be a longer appointment than typically would be the case as they run through all the ins and outs of this treatment.
0 -
hi SusaninSF, thanks for your good wishes.
I send the same to you on the ARX788 trial, well done for being a trailblazer and helping forward treatment for MBC patients \o/
Sadiesservant, I hope you have a safe journey and to get your appointment.
0 -
First infusion done and I feel fine. Thankfully the weather cooperated so there were no issues getting there. As I suspected, no premeds and I haven’t needed to take any anti nausea drugs. So far so good
0 -
Sadiesservant,
Glad you made it there safely! Love that the infusion is so fast.
Hugs, Susan
0 -
Round 1, day 7 of havalen. Hair ok, occaional slight blood in nose, mouth ok , appetite ok ,but some acid reflux, neuropathy same, energy levels low and so weepy. I am not the crying type ,but found tears streaming this morning ,just putting my shoes on and I wasnt having a problem!
Bloods ok, so I will have second dose tomorrow. I have asked about dropping the steroid before the infusion. I was awake until 3 the next morning and had a very red face for 24 hours( which I have had with steroids before) .I am going to take omeprazole in the morning, to offset the heartburn that started on the car journey home.
This sounds negative, but I think once I understand the cycle and get some strategies in place I can manage this.
Good luck to Sadiesservant on your next treatment. Hope everyone else is doing well.
0 -
Hi wonderful ladies, I want to introduce myself before I read through these posts… I am starting this treatment next week hopefully after some significant progression showed up in my liver, and my tumor marker went from 190 in September to over 800 yesterday…. Anyhow, I’m grateful for this forum and hope that all of us benefit tremendously from this drug. I’m er and her2 positive with liver met since Feb 2017, this will be my third chemo in 5 years with maintenance treatments in between xxx
0 -
Daywalker, I too am new to this Halaven forum but not new to Stage IV forum. Just found out that I'll be starting this drug from next week. I have been reading the experiences of some of the ladies here - each one has a different side effect but neuropathy and hair loss seem to be common.
I don't know if icing before, during and after injection would help, considering it takes only 5 minutes to get the drug injected. I am concerned about the neuropathy since I already have this. My hair has just started to grow !
Sadiesservant, how are you feeling after a week of your first infusion? Any nausea?
SusaninSF how long have you been on this drug? How are you doing?
I have had 15 lines of treatment but for some reason this upcoming Eribulin next week is making me nervous.
0 -
Hi S3K5.. I answered you on the liver mets thread but will recap (and welcome Daywalker... there seems to be a bunch of us starting this one). I understand the trepidation completely. I was the same for some reason, even though I have also been on multiple lines of treatment. This is my fourth chemo since my MBC diagnosis in addition to multiple lines of endocrine treatments (including CDK inhibitors that are often not a walk in the park!).
I can happily report that I have had zero nausea. Hooray! I have had some aches, pains, headaches and fatigue. It has all been manageable for me with the fatigue being the most problematic. (I think my days of watching late night television are well and truly gone. LOL.) I'm waiting to see what my hair does as I've heard that thinning is most common rather than total hair loss but that doesn't seem to jive with what I have read here. I don't have neuropathy... yet but agree it might be a bit tricky to do the coldpack trick with a two minute push. I think if it's a problem their solution is to dial back the meds.
Hope you both have zero or minimal side effects and great results! I want us all to get those liver mets back in their box!
0 -
S3K5,
I was only on Halaven for 3 cycles. My scan showed a mixed bag of progression in the nodules in my lungs, shrinkage in one liver tumor, and progression in another. The non-cancerous problems in my lung were all better. Also shrinkage in a periaortic lymph node. As far as SEs, I didn't experience any while on Halaven.
I had already planned to switch to a clinical trial after the third cycle of Halaven so I haven't even talked to my MO about the scan results. I will see her on 1/25. I would probably have had to switch off of Halaven anyway given the progression in my lungs. It is my lungs that are giving me the most problems.
This will likely be my last posting on this thread but you all know where to find me on the clinical trial, lung, liver, and brain mets threads.
Hugs, Susan
0 -
Round 1 , day 9, after second infusion. I was given a lower dose of steroids. I went to bed and got to sleep for a short time, but woke an hour later. I could not get back to sleep ,so here I am at 2.30 in the morning. The steroid does give me an energy boost. I got home did some vacuuming, decluttered a couple of drawers and sorted out my paper [pre pinterest ] recipes, before cooking the evening meal. I feel much better after this infusion, the omeprazole appears to have prevented the odd, queasy feeling I had last time.
This may be tmi, but just after I posted, day 7, I had bad diarrhea, which was a surprise, as for the past 5 years all the treatments I have had have made me constipated, ok now though. I stopped crying day 8 !!
S3K5 and Daywalker, I hope I have not frightened either of you and Halaven treats you well for a long time. ''knowledge is power''
0 -
Hi Denny, no worries, I agree knowledge is power! Here in South Africa we can use cannabis legally for medicinal reasons so I will try suppositories again, cannabis really worked wonders for side effects during the Taxol days.
My doctor is hopeful that Halavan will be helpful because I responded well to chemo in the past, I usually only stay on it for a few months and then can stay on herceptin for a while… with Halavan I understand that one stays on it for as long as it works.
S3K5, May this be a good and extremely useful treatment for you with very little and manageable side effects!
Xx
0 -
Just a quick check in to see how folks are doing. Second infusion of the first cycle was uneventful. Hooray! In fact, I feel I have far less fatigue than I did following the first infusion. And, while I know it's early days, I actually feel improvement in a number of ways that make me feel hopeful that it's doing it's work.
Hope you are all doing well with minimal side effects and plenty of success.
0 -
Sadie, great news!
Denny, sorry about the surprise GI problem. I hope it was a fluke!
I have had three full cycles with minimal SEs. I have a 24-hour energy boost from the steroids, and the slightest amount of neuropathy beginning in my fingertips. I had a couple of mouth sores at the end of the first cycle, but started drinking ice water during infusion and have not had the problem since. I believe I'm also responding very well based on CA 15-3 and symptoms, but we likely won't scan for a couple more cycles.
I'm having to take an additional two weeks off after having COVID, so my fourth cycle will begin on 1/25 rather than 1/11. I find it very frustrating, but it's hospital protocol.
Daywalker, S3K5, hoping for a comfortable and effective kickoff.
0 -
Hello All, Day 15 , apart from the steroids, round 2 has been much esier on me . In fact I have been feeling so well I have been overdoing things on some days. It is lovely to wake up and feel ''I can .....'' today. I need to built up some stamina ( too much slobbing on the couch while on Abraxane) and learn to pace myself. I am pleased to say I still have my hair, my mouth is ok - using mouthwash, some gurgling in the GI area, neuropathy is the same. I did get a bit down for a day, but no unexplained tears. Now I have a week off. I feel I can handle this treatment at the moment, I just hope it is working.
Sadiesservant pleased to hear you are doing well on Halaven
Thanks for thinking of me Piksie. I hope your covid infection wasn't too bad and you get the next round on the 25th. I am quite scared of getting covid , due to previous pleural effusion, staying in and being 'careful' feels more restricting than chemo. Omicron seems to have peaked here in the UK, so I am hoping to get out and about and see more people soon.
Daywalker, S3K5 let us know how you are doing, if/when you start Halaven.0 -
Great to hear Denny. I can also say that the second infusion was easier with much less fatigue. I do feel it when I push too hard though and am a bit more tired now after a few days of work. My mouth is being problematic and the baking soda rinse didn't seem to help. No sores yet but it feels like I've eaten overly hot soup or something. The other thing I have noticed is some issues with sleep. I have no trouble getting to sleep but seem to be waking after a couple of hours. It takes a bit to get back to sleep. Anyone else have trouble with broken sleep?
0 -
Hi Sadiesservant, I try to drink the recommended 2 litres of liquid each day. I have to get up in the night to go to the bathroom. (While there I use the mouthwash .) It varies how quickly I get back to sleep. If there is a problem I listen to the radio.
Enjoy what you can in the week ahead.
0 -
Denny, I’m so glad to hear you are doing okay with side effects so far!
I’m starting treatment this coming Wednesday, funny enough my biggest worry is nausea, I absolutely hate nausea! But hopefully my doctor has some tricks up his sleeve… I wonder has any of you ladies ever had symptoms specific to the cancer in your liver? My liver looks very bad on scans now, multiple lesions and the biggest being 9cm, with some cirrhosis thrown in there for ‘special effects’, but my liver enzymes are only slightly elevated, and I feel the best I have felt in five years of stage 4 treatment… I hope Halavan arrives at the party before symptoms do!
All the best everyone x
0 -
Hi Daywalker, I used to be almost phobic about being sick . My first round of chemo in 2007 changed that. Fortunately there are plenty of anti nausea meds around now . If you tell your medic team and insist you want an anti emetic,I am sure they can find one that suits you. I hope you have an easy time on Wednesday and the halaven works well with few side effects for a long time.
0 -
Hello from New Zealand! I am a stage 4 breast cancer person and the admin for the Metavivors NZ facebook page. One of our members has been told she can either try Halaven or Vinorelbine. Apparently you can't do them sequentially? Does anyone know anything about that? She also has a lot of pain in her hips and shoulders (long story) and is having a hard time being physically active. Anyone have similar issues and good luck on Halaven?
Thanks for any advice - I'll pass it along to her!
I may look into Halaven too - I'm on Ibrance and Extemestane (probably spelled wrong) with bone and liver mets. My liver markers except GGT look good, but my tumour markers (CA15/CEA) keep going up. My oncologist is threating me with IV chemo but he keeps forgetting I have insurance that covers unfunded drugs (another long story about how drugs are funded/available here). So I'm interested too!
0 -
Hi Kiwicatlady,
I had Vinorelbine last fall which unfortunately didn’t work for me so we switched to Halaven. It seems there are “rules” for access in each jurisdiction that are hard to comprehend. Here in British Columbia Canada we are allowed to go from Vinorelbine to Halaven but not the other way around. Go figure?
I’m new to this treatment and am not sure how well it’s working (it appears my kidney blockage is getting worse based on new pain). BTW, I receive the drug through an IV. It’s very quick as it’s delivered from a syringe into the line over about two minutes but still requires an IV drip through my port. Not sure if that’s the case for everyone
0 -
Hi all, I just want to give an update on my first treatment today.. the infusion was quite uneventful yay, at home now in bed because my muscles ache all over which makes me quite tired BUT I don’t mind that too much if the nausea can be kept at bay… anyways, hope the meds is working for all of us xx
0 -
Thank you so much for your response! I'll let her know. I have invited her to this thread as well.
Wishing everyone a great day and rest of the week!
0 -
Round 2 , day 2, As I was having adverse reaction to the steroids and read here some of you don't get any, I asked the oncologist if we could drop the dose again. I was on such a small amount of steroid it was decided not to have it. I slept last night, not well, but most of the night and I have not had a red face today. I do not have the energy boost but I still feel better without the steroid . I have my hair, but have noticed a few have fallen out. My tongue feels as if I have drunk a too hot coffee. No nausea or sickness. No GI problems and neuropathy is the same, but I did have a urine infection last week [cured with antibiotics] I just hope Halaven is working for me and others.
Sadiesservant, sorry to hear you have increasing pain in your kidneys, I hope it is investigated and treated soon, and you can have yout next infusion.
Daywalker, I hope you managed to steer clear of sickness or nausea and are feeling ok.
Kiwicatlady, you have so many options. Halaven is in one of many medications I have had since MBC 2013 and my oncologist has said there are others I can try in the future.
0 -
Hi Denny, I’m so glad you had better sleep… I am now on day 4. No nausea so far (yay), my appetite is fine, just very tired… day 3 was rather unpleasant with body aches and fatigue, but I managed with lots of fluids and rest. To be honest, I haven’t given my hair situation much thought! If I wake up tomorrow morning looking like a half baked zombie then my house will be EMPTY I tell you, no teenageboys in sight hahaha (one has to laugh sometimes)
Anyways, hope everyone is coping okay and most importantly that this medicine is working xx
0 -
Hi Daywalker, pleased to hear that the first infusion hasn't been too gruelling for you. Mmm, teenage boys ,thats enough to deal with !!
0 -
Hi Denny, Day 2 of infusion 2 for me and all is well. Bit of mouth trouble but not too bad. My NP suggested I try Biotene so we will see if that helps. Biggest issue is fatigue.
Hope everyone is doing well!
0 -
Hi ladies, hope you are all doing okay xx
I’m bummed because my neutrophil count is below 1000 after just one infusion AND I had those painful neulastim injections at home… anyways on the upside my total white blood count is looking good, so we will test again on Monday morning. This has never happened to me before so I feel a bit nervous about postponing the second infusion by almost a week…. Other than that most of my side effects have been due to the neulastim shots, very achy back and tummy cramps, but no nausea and normal appetite. “One step at a time” is probably the healthier mental outlook during such circumstances (which is quite the accomplishment - literally - if one considers all the treatment fatigue we go through)
All the best ladies, hope you are resting well x0
