Halaven - Day 1
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Hi Daywalker, sorry to hear you have a delay in your treatment. Hopefully with a few extra days off the neutrophils will bounce back and you can continue with the next infusion.
I had my second infusion of second round. No steroids today as I coped without them last time. Not much has changed; mouth ok'ish ,no sickness or other gastric issues, not excessively fatigued, but I am definitely slowly saying goodbye to my hair. Is this a sign it's working? I hope so.
Sadiesservant, hope you are well and get your next dose of Halaven.
Best wishes to everyone reading this thread.
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Hi Denny. So.. is your hair coming out in chunks or? I haven't seen any obvious signs of hair loss but do think it looks a bit thin on top. I'm doing well - infusion #2 of round #2 tomorrow assuming my blood is cooperating.
Sorry to hear about your delay Daywalker. I know I always worry when there are delays although I suspect it is not as crucial as I imagine. Hopefully you blood bounces back and you get the next infusion under your belt asap.
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Hi Sadiesservant, the hair on my head is thinning, no clumps yet. My eye brows and lashes and body hair seem ok, but more residue in the bottom of the shower tray!! Hope you dont feel too fatigued this time round.
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Hi everyone. I've been here a long time but don't post very often. I started this treatment this week after being on vinorelbine which hadn't worked. Had to have a blood transfusion before the treatment so took quite a while in the hospital. Hopefully next week shouldn't be there long. I managed to work yesterday (day after treatment) and have felt ok. It does seem to have affected my taste. A few things I've tried to eat that I normally like taste awful. Fingers crossed this treatment works for us all
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Hi Nicky! Sorry to hear about your tastebuds, ugh..I use an anti-bacterial mouthwash (tastes like cheap medicine yuck), so not sure if that is what is helping my tastebuds to work decently. I have come across quite a few ladies on this forum who have had tastebud issues, so it can to be a thing on this drug
all the best, and may you soon enjoyall your favourite flavours xx0 -
Hi Nickie69, wow, well done for working the day after the infusion. I am not having too many problems with my mouth, but as a precautionary measure I have been using Diflam oral rinse, milder than Corsydol which was recommended to me in the past and was too strong for me. I am about to try Oralieve toothpaste, expensive, but it has helped a friend who had mouth issues for ages. Sorry, I am not sure these products are available other than in the UK. I hope everyone can find some relief from side effects.
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I've been trying the Oralieve toothpaste and mouthwash and the dry mouth is a lot better so thank you for suggesting those. Most food tastes bland so I’m having spicy foods.The main side effect I have now is sleep (someone else mentioned it up thread). I thought it may of been the steroids but after a week of 1-3 hours sleep a night I was struggling to function. I ended up going to the doctors and being prescribed sleeping tablets. Am managing 5-6 hours sleep now. The doctor would only give me enough for a week so I will speak to my oncologist this week to see if I can stay on them. Hope everyone is doing well
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Hi Nickie69, glad to hear the Oralieve products are hepling. I hope the oncologist was able to give you something to help with your sleep problems.
I am on day 1, round 3, I found out today my neutrophils were down to 1. I was given the Halaven, but on day 3 and 4 I am going to have to inject myself with Filgrastim; to stimulate growth of white blood cells. This has not happened on previous 2 types of chemo and I am not looking forward to injecting myself. I have the nurses at the hospital on standby in case I cannot do it. If anyone has any tips about mitigating side effects [apart from taking painkillers] I will be grateful.
Hope everyone is getting the treatment they need on time.
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Sorry to hear about the blood issue Denny. I had my bloodwork this morning and so will see how mine look. The numbers were great after my first cycle but I must admit that I am feeling the fatigue even more post cycle 2 so wonder if things have tanked a bit. I don't think they do the injections here typically. Instead they lower dose (although I am still at 80%) or delay by a week. I had a one week delay when I was on Vinorelbine but that was after they increased my dose. I'll know later today if all is well for infusion #1 of round #3...
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Hi Denny, I had a three week gap between my first and second infusion of round 1 due to low neutrophils, and I still have the Fulgastrim injections… happily I could get treatment two days ago and have been injecting myself. The one thing that made such a difference to the bone pain caused by the injection is Clarityne, apparently the bone pain is caused by a release of histamine. Hope this helps!
Well my hair is mostly gone after two infusions, and I’m very tired for about three days but trying to manage it with lots of water and health shakes.
Keep well Ladies x0 -
Hi Sadiesservant, hope your bloodwork was ok and you got to start your third cycle.
Daywalker, thanks, I now have an anti histamine ready .
I managed to do the filgrastim injection myself , I hated looking at the needle going into skin! Ok so far, but I have to do it again tomorrow , then that's it until next blood test. My hair is going thin , particularly above my temples, like male patterned baldness. I think my neuropathy is a little worse but other than that coping ok at the moment.
I hope fatigue isn't holding you back from doing things you enjoy.
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Hi, me again, I hope it is quiet on this thread because you are all doing well.
The filgrstim injections worked for bumping up my neutrophils, without more side effects. I have been given two injections for this weekend so that the numbers don't crash again after this infusion. Thankfully ,no new side effects, just more of the same; hair thinning slowly, dry lips/mouth sometimes. I have fallen asleep a couple of times when at home, sitting in the armchair , but have been ok when I go out and am engaged in what is going on around me.
I have been going out more; shopping , meeting with friends and family as Omicron appears to be waning here in the UK. I am tired of being classd as 'vunerable' and locking myself away. I am well enough to get out and about, I dont know how long this will be for, so want to do as much as I can, while I can.
Thinking of you all.
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Glad to hear you can inject yourselves with Filgrastim better than not having treatment but still not nice to do. I was admitted to hospital on Tuesday. Went as normal for blood test and covid swab and asked the chemo nurses if my distended stomach and swollen legs were a side effect of the chemo. They were concerned so checked my bloods and had to have a blood transfusion (again). Then they sent cultures, more blood tests and urine sample to get checked and thought I may have ascites. Bilirubin was high, platelets and white blood cells low. Was very uncomfortable, struggling to eat and I looked pregnant. Had chest X-ray and ultrasound. My liver is enlarged and that’s what was causing it. Was relieved it wasn’t ascites and only had an overnight stay. Deferred my chemo for a week. Hopefully I can start my 2nd round next week. Hair slowly falling out and no other side effects any more.
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Nickie69, ooh it's so scary when the medics say 'into hospital now'. It is the place to get lots of tests and results done quickly. I am pleased you are home and it was not ascites. I hope you can get some supplemented shakes [complan] inside you and build up your strength for the next chemo.
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Nicky, I’m so sorry for your hard experience! But relieved that you only had to stay one night. May you recover well and may this the chemo work powerfully on those mets xx
I had treatment yesterday, just been sleeping a lot today, my biggest side effect has been this fatigue that feels like your whole body is pulled to the ground, but Im looking forward to a two week break!
All the best ladies x0 -
Nicky, sorry to hear you had a night in hospital but I’m glad they were quick to check it out. I find it hard to know when something is significant or not. It sometimes feels like an innocent question starts to snowball and next thing you know… Good to hear it’s not ascites. I have a large liver and one tumour near the capsule that causes me grief. They’re always surprised it causes discomfort as the liver doesn’t have nerves so typically has to be full of cancer before you have pain. Um… not always…
I’m with you on the two week break Daywalker although I find the fatigue is at its worst on my week off. Blood looked good yesterday so off for infusion number 2 of the third cycle today.
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So sorry to hear about your fatigue sadiesservant, it stops you doing so much when it kicks in. Well I can’t have my 1st of 2nd round tomorrow as my platelets are too low at 64, they were 50 last week. I have an appointment with my oncologist Friday morning to discuss treatment options. The nurse said if it’s like this after one round then it would probably be ongoing. Sounds as if I’ll be on a new treatment quite quickly although I have no idea what. Hope this treatment works for you all for a long time x
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Saw the oncologist Friday. She said not good news. My liver is failing and my bone marrow is disintegrating. Advised me to get my plans in place regarding my children (single parent), I have 3 children still living at home ages 23, 11 and 10. Wasn’t expecting that at all. She is trying me on the lowest dose Taxol chemo weekly to see if my liver and bloods can deal with it but it will be the last treatment I can have. Started the Taxol yesterday. Hope this treatment works and gives you all good results
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nickie69, I am sending you the biggest hug. I have been told twice to get my plans in place, the last time in 2013. My sincerest wish is that taxol gives you more time with your family.
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Dearest Nicky, oh I’m sorry for the unexpected news… what a shock! My heart feels so with you in this hardship, and being a mom just adds to it xxx I am a Christian,I’m praying for the taxane to work gently yet speedily. Nothing is impossible for the God and Father of our Lord and Saviour Jesus Christ xxxx
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Hi, I am just back from my latest chemo. My oncologist asked to see me, as a rash, I have had twice in the past, has returned, before it has been linked with failure of treatment. I asked to continue with the halaven without an extra break, with the addition of the dreaded steroid and antihistamine to relieve the itch. I requested we hold off the filgrastim injections [ rash is a known side effect], but acknowledged I may have them next time as my neutrophils are low. I am feeling better than I have done in over a year and I know the lump in my breast is shrinking, but you never know what horrific path this nasty, secretive cancer will take you next. I will have a scan after the next complete round of halaven.
Just as covid restrictions have eased here, my best friend has been tested positive, so I wont be seeing her in the next two weeks. Along with the depressing news about Putins war, it's not been a good week. Sorry , I just need to offload.
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Hi Denny, I’m sorry about the hard week. So many things weigh in on us as fragile yet precious human beings. So please offload all you want xx I feel you also on the Ukraine tragedy, that really is hard for me emotionally. As the Proverbs writer said The heart of man is desperately wicked, who can understand it? I see it play out right in front of my eyes on tv and the internet and it makes me feel helpless to be honest, especially since so much seemingly depends on strong yet wise leadership and these days that seems a bit thin on the ground.
I had a two week break between cycles, my haemoglobin and iron levels took a dive which explained that terrible tiredness I had for two weeks straight, my throat and eusophagus got badly inflamed and I’m not going to lie but I had my moments of nah this is not for me, oh and my first tumour marker test (which is an eye sore to look at) since treatment began showed no budging… at least it’s not up but still I was hoping for an Armageddon on those numbers haha xx my hubbie just informed me that we will be swimming in the ocean today (I live close to the sea and mountains here in Cape Town so am extremely grateful for the beauty of nature)
Apologies for the long post but know that myheart is with you ladies xx
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Hi, second attempt at an update!! I had chemo yesterday, neutrophils lowish but no filgastrim injections this time. My hair is shedding slowly, my taste is a bit off , no other mouth issues. Neuropathy the same. My rash has stopped spreading and is healing, but I have the weird sensations of steroid overdrive and antihistamine drowsiness. It will be good to get to sleep before 2am and not feel tired all the time when I stop the streoids next week, my week off.
I miss catching up with others on this site ,but you need some patience to navigate here at the moment. Good wishes for the weekend everyone.
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Hi, am I talking to myself? I have read elsewhere that Sadiesservant , sadly, has not had the outcome with halaven we would all wish for and is moving on to another treatment. My side effects are the same as before. I had another infusion yesterday , due one more before I go for a scan, scananxiety is starting.
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Yes, unfortunately Halaven is a bust for me. It’s nerve wracking when the list of treatments gets shorter and shorter but there are still a few left for me. I have a biopsy scheduled for the 12th and then may go back to Xeloda. Hopefully my bone marrow will hang in there as that was the reason I didn’t stay on it. At this point my primary concern is to get the liver mets under control.
Sending positive thoughts to all of you for a good long run on this drug.
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Hi Sadiesservant, so sad to see you have to move to a different treatment. I’m also moving to Xeloda next week due to horrible neuropathy caused by Halavan. I’m disappointed because it seems like Halavan was working due to dropping tumor markers. I hope Xeloda treats you well and works wonders on killing the bad cells xx
Denny, all the best with the scan, I trust the news will be positive xxx I’m having a scan this coming Monday… to be honest I’m just so tired of scanxiety I suspect my brain has switched off that part because I’m like whatever… which is very unusual for me!
All the best dear ladies! Xx0 -
Shoot Daywalker! So sorry that you have to make the switch as well. One piece of advice, make sure to get a good moisturizer and keep your hands and feet well hydrated. Xeloda is notorious for hand and foot syndrome. I’m not looking forward to that aspect (goodbye stylish shoes!) but will deal with what I need to in order to get the liver under control.
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Hi Daywalker, Sadiesservant a hug each. I hope Xeloda works for you, I was on it for a short time , but that was when i was hr+ . The xeloda thread is active and if you have any concerns contact Denny123 , she was really helpful to me. I bought specialist creams and socks and never had foot problems. May your side effects be minor and it works for a long time.
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Hi , as expected my scan result showed a mixed picture ; halaven worked on breast and lung mets but there was progression in liver. My oncologist is going back to last years biopsy to choose the next treatment , it must be difficult, as I have had all the obvious ones. He is talking of another chemo alongside immune therapy if appropriate. I wont be missing the rash the halaven aggravated the last 3 infusions and the worsening neuropathy. I now have a 2 weeks break at least to enjoy life.
Enjoy Easter your way. xx
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Darn it Denny. It’s interesting that three of us failed on Halaven at the same time. Sorry you’re also looking for another treatment. I’m still on a break as I wait for tomorrow’s biopsy. It’s anxiety inducing as, on top of the liver issues, I am having a lot of right shoulder and arm pain. I’m worried about possible involvement of the brachial plexus. I am so done with the constant pain!
I’ll be thinking of you. Let us know what you decide on. Hug
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