Halaven - Day 1
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Southernsurvivor I am not having any issues walking just the numbness. I start cycle 6 or 7 (I have lost count) on Wednesday. I have found this a really easy chemo but worry with every ache and pain I am having disease progression. I want to be on this chemo as long as I can. Australia is behind America in treatments which is frustrating as well.
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Southern survivor. Thank you so much. I think I’m akso finding the Halaven easy because I had just had Gemzar which was sooooo hard for me that even before I knew I had progression I told my MO that I was coming off it.
Bab
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Thanks for feedback girls. Glad to know Halaven is relatively easy.
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Hi all! Wanted to check in with my Halaven friends to see how everyone is doing. I think we now have Babs, Jeenee, Tennille, Smax and Danzk - anyone else? Linda is no longer on Halaven treatment based on another thread - wishing her the very best. Babs - I’m thinking you may be on your way back to the US after visiting that sweet new grandson of yours. We would love to see pics when you have time.
Yesterday I started cycle #9, first infusion. I also found out my tumor markers had decreased 14 points this cycle. Not exactly what I wanted but will take it as it’s still going in the right direction. It is frustrating though going through this when it seems like the response is so slow. I guess no one said this crappy cancer is easy! Onc didn’t mention any scans. I see him again in 3 weeks, so I may mention it to him again. My last CT was in June 2017, although since my TMs have decreased a lot on Halaven, he may just wait awhile.
That’s all I know for now. Take care everyone
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I will be leaving the Halaven thread as my wife progressed on on recently.
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Hi All,
I came back late Sunday night from Paris and my beautiful new grandson. JFK was a true disaster. Been seeing lots of Drs at MSKCC as f/u from rads, the study and in anticipation of Y90. Today I see my MO and should be having a Halaven infusion tonight- will keep you posted. Before I left (for 3 full weeks) I had a Doxil infusion-my hair is soooooo thin now. Oh well. At least I was able to be away and help my dir for 3 weeks!
Letmywife- so sorry about your wife's progression-what txtment will she be on next?This sucks sometimes,
Babs
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Well I’m switching to Doxil. MO felt with everything going on now (all the y90 related appts and dd and grandson visits it would be less taxing to have 1 infusion per month instead of 3. We can keep Halaven for when it is needed
Bab
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LMWL - ugh, progression. I truly don’t like that word! The very best of luck to your wife on her next course of treatment. I pray it’s the “one.” Let us know how she’s doing.
Babs - we will miss you here too. I hope Doxil does the trick and I’m happy that you still have Halaven in your back pocket. I’ll be keeping up with you to hear about Doxil, as that is one of the few that I haven’t yet tried and is probably in my foreseeable future. So glad you got to spend 3 weeks with your DD and grandson creating some special memories. Good for you!0 -
I had 4th Halaven infusion yesterday. My hair started falling out after cycle 2, 1st infusion. I cut hair short in back, asked sons to shave it short. But they all refused . Glad I am not bald, but hate seeing scalp so easily. I prefer hats Over wigs, wore pink gator ball cap to its death back in 2009.
How often is cancer antigens checked? My dr checks once a month, but when they could not get blood return last month from port. Infusion nurse took blood from arm & said labs on her screen did not include antigens. I did not care since I had only 1 cycle done , would rather wait until after 2nd cycle complete. So far I have found Halaven tolerable. I had fall the night I had 2 nd infusion which left me in great pain in my right hip & lower back. My 3rd fall in the last 6 months, fractured left pelvis in 2 different places , lots of bed rest & wheel chair rides.
I am wondering about hand/foot syndrome. Today I have rash on face & palms of hand. Some shooting pain in left foot. On top of all this my saline breast implant is losing saline, it has gone to half the size it was. I think my son's very large dog jumped on me. My counts are so low I doubt my dr would want to do anything about it.
I have made this too long, thanks for sharing your thoughts. Sue
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Southernsurvivor / babs -
She will be starting with Abemaciclib + Faslodex combo if insurance approves it. Although she failed on Ibrance + Letrozole combo before, MO believes that she can still respond with Faslodex as a combo to a CDK4/6 inhibotor.
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Darn it those tumour markers are up by 30 points again. I know it doesnt mean much but hate seeing it anyway.
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Sue - my TMs are checked after each cycle is completed, so every 3 weeks. I do my labs the day before my doctor appointment, so he has all the bloodwork for him and I to have a good discussion. I'm so sorry about your falls - that is so scary! Do you feel lightheaded at all before you fall? I'm wondering what could be causing this. Also, I wanted to let you know I've had no rashes or HFS while on Halaven, or any shooting pain. How is your implant doing? Since it's saline, if there was any tear or hole in it, it would completely deflate. I have saline implants too and one day, one of mine completely deflated. Ended up having to have more surgery to replace it. Found out that it was a “manufacturer's defect" in the implant that caused it to rupture.
Tennille- praying this small increase is just a “glitch" and your TMs will decrease again each time. I know what you mean though, as I feel the exact same way when I have an increase. It's not fun living our lives around a TM number!
Hang in there, girls - we are in this together!
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I have found recently that 24 hours after my infusion my liver feels like it is about to explode.
It settles quickly though. Has anyone else had this happen?
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Thanks Southernsurvivor for your thoughts. I am excited to report my TM dropped from 427 to 146 after 2 cycles. Missed my treatment this week due to cold or flu, was very ache in arms, legs & hip joints. My falls were all my fault. Was walking briskly thru kitchen & slipped in puddle of water created by dogs. Recently I went to get in bed, thought I was grabbing bedsheet, but had pillow instead , as I tried to pull self into bed I lost my balance & went straight down on my coccyx. Fractured my right hip & gave myself compression fractures.Rashes on face & palms have disappeared. Have lost a lot of hair, not bald though. I read tonight of Kandi’s passing, my heart is saddened, on top of that my best friend since college has now been Dx with BC. Looking ahead to better days . Sue.
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Sue -
Wow - you have been through a lot recently. So sorry about your falls.
I am pleased to hear about your TM drop - that is fantastic! Hang in there - I fully understand the crap we all deal with and at times, it seems never ending. Better days will come.
Hugs to you today,
Southern0 -
Tennille,
I haven’t had this issue about the liver after infusion. I am feeling daily discomfort now in what I think is my liver. I feel it when I’m laying down or partially laying down. No pain, just discomfort, on the right side directly below my ribs. Time for a CT scan to see if something is up. I’m sure hoping not.
Hugs, Southern
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Hello ladies. I am glad to find this thread. I was switched to Halaven after progression during Ibrance. First session was the day before yesterday, felt a bit shaky afterwards, and had cramps in my back and inside belly somewhere. I've been taking the anti-nausea drugs they gave me and it stops the cramps. Today I slept loads and loads. Hopefully by day five I will feel brave enough to go to work, I have a big expedition.
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aramantha - Welcome to our small group here. I also had progression on Ibrance and then next up was Halaven. I will tell you Day 3 and Day 4 (Day 1 being chemo day) are my worst days. Also, the side effects of my first cycle, so the 1st two infusions, were the worst side effects I’ve had. I’ve now had 9 cycles and side effects aren’t too bad. Days 3 & 4 continue to be the worst days for me but I still function OK on those days. I’m glad you have good anti-nausea drugs. I’ve only felt nausea a few times on Halaven, so I hope that will get much better for you. On other chemos I’ve felt really nauseous, especially as my mets are in my abdomen.
Take care and keep us updated on how you are feeling!
💕 Southern
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Southernsurvivor, I too sometimes feel a little more 'aware' of my liver. I have just had a scan and although I havent seen the report yet the Onc called and said all was stable and my treatment was staying the same.
My worst days are Thursday and Friday with Monday being my infusion day. They are pretty manageable though. I usually just feel a little more tired and my mouth gets gross and sore. My bowels arent too happy these days and Buscopan is my new best friend.
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Hi all -
I saw the PA yesterday and my TMs only went down 3 points. Disappointing to say the least! I will be dong a CT scan in the next few weeks (on my chemo off week.) It’s been 7 months since my last one so it’s time. Really praying this Halaven hasn’t stopped it’s effectiveness. It’s been manageable and I’ve gotten used to which days are not so good and try to plan around them. I’ve been on Halaven 6 months now.
Hope everyone has a good day!
Southern0 -
Halaven really seems to have a short life which really sux because like you southernsurvivor I have managed this chemo well and know exactly which days will give me gip. Mind you this week has been my off week, I am due back Monday and yet my abdomen has really not been great at all. My tumour markers are also playing up. I had a scan 2 weeks ago and Obc said all is stable.
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Thanks for the welcome Southern Survivor, and hello lovely ladies. I had my second infusion today, and will start xgeva on Monday. SE okay, first week was glorious, crampy stomach lasted about three days, but it was tolerable, and then I felt great. Today I feel a bit fluish and shaky, crampy stomach, vague headache, but happy. I have read through the first twenty pages of this thread, and hope to read more, but there sure are a lot now ! Southern Survivor, I really hope that Halaven has NOT stopped its effectiveness.
Best wishes to fellow halavenites
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Hello Sue, Tennille, and Amarantha! Babs may be coming back here too I think I read on another thread. How is everyone doing on Halaven?
I'm sitting here in the cancer center waiting room drinking my drink for the CT scan. Finishing up cycle 10 of Halaven (had 2nd infusion for that cycle last Wed.) and I didn't feel that well this weekend. I'm so tired and just overall didn't do anything this weekend. Stomach was a little upset, but not bad.
I'm actually glad I'm doing a scan as it has been about 7 1/2 months since my last one. My last one was right before I started on Halaven. My MO follows my TMs closely as they have always been “spot on" for the past 10 years. The last 2 cycles my TMs were pretty stable and didn't drop like they had the previous 8 cycles, so we will see what this scan shows.
I pray all is going well with the few of us on Halaven. We just need our stupid cancer to be beaten down by this stuff.
Hugs to all!
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I have just finished cycle 8. Tumour markers are slowly rising but LFT's are good and my scans say everything is stable.
I have a rotten cold I cant shake though and I am scheduled for ureteral stent surgery next week. I am anxious about GA's as it is so I better be fit and healthy.
Im also finding my mouth issues are getting a little worse each cycle. Woke up this morning with 2 juicy blood blisters in my mouth. Oh the joys. I cant complain though. It could be worse.
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Hello Southernsurvivor and Tenille.
Both of you are further along than me, I just had infusion number three. I was told that my hair would not fall out, but guess what. Yup. I started Jan 26, now its Feb 16, and my head went through the stage where all the follicules hurt, and now if I pull lightly on a clump of hair it will just come out. Last time I did chemo (four years ago) this is how it started, I ended up pulling a lot out, then having head shaved and getting wig. I've promised myself to let it fall out naturally this time without my help or shaving head, and pray that some of it will stay on my head, my hair is long thick and beautiful, so no wig is going to satisfy me. I made an appointment with a wig place for next week though. How are you both doing hair-wise ?
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Hi gals -
Tennille - I hope your cold goes away so you’ll feel good for your surgery. Stable is good - yea Halaven! Blood blisters sound miserable. What is your MO giving you for that? I haven’t experienced mouth issues yet.
Amarantha - my hair started to fall out a lot in the beginning. Everytime I would comb my hair, strands would just come out by the handful. I had my sister shave my head to about 1/4 inch long as I couldn’t stand it any longer. I thought I would end up bald. Well, my hair stopped falling out and about 1/2 of my follicles remain. (I kept more follicles on the sides and back of my head - the top of my head is the worst.). Bottom line is I may as well be bald as the hair I have left doesn’t cover my scalp, so I have to wear a cap or wig anyway. I keep my head shaved short to about 1/4 to 1/2 inch long now and just cover it up. If I had started out with beautiful thick hair, maybe I would have been able to still style it and just have thinner hair. That’s not my case though as my normal hair was fine and thin.
I got my CT scan results back and they were quite good as compared to the last one done in June 2017. Several small improvements and some things stable but no more ascites, which was great. I do have some thickening in one part the bowel which was there previously but now has an “incomplete distention” - whatever that means. They suggested getting a colonoscopy to rule out any underlying lesion, so that’s what I will schedule in the near future. Honestly, reading the scan was almost like a foreign language. I wish they would write in layman’s terms. Overall decent results and MO was happy. I will continue on Halaven. Cycle #11 starts next Wednesday. In the meantime, I’m going to enjoy my week off!
Take care all!
❤️ Southern
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Hi Southernsurvivor, congratulations on your good CT scan results. I hope thickening in the bowel isn't a horrible thing. You are right they are in a foreign language, the thought has occurred to me to ask the regular doctor to translate for me. Thank you for telling your experience with your hair loss. I'm rather horrified to be going through this again, as I had really not expected. Hair is just falling all over the place, and in huge globs. I have so much to lose too, so even with all this much lost I don't think you can really tell (unless going through the wastebaskets) I hope it will stop before I'm entirely a bowling ball.
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Southern survivor. Great results! So happy to hear!
I get scans on Tuesday. Y 90 on 3/2and start back on Halaven on 3/8. I hope it stays effective for me as I’m realky running out of options!
Bab
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Great to hear your scan results are positive southernsurvivor
Amarantha my hair started to fall out in chunks but I didnt shave it, I got it cut short instead because I was told it may not all fall out,which it didnt. Its now growing back but its completely grey and my eyebrows are gone. Such a lovely look.
Still have a rotten cold. Spent 24 hours in hospital in isolation because im neutropenic but sent home to my little disease breeders because I have no temp ha ha ha
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Babs, welcome back! I’m sorry Doxil wasn’t working for you but glad you could come back to Halaven. I know exactly what you mean about running out of options. Me too - I’ve been through too many different treatments in 4 years and it’s scary. Keep us updated on your Y90.
Tennille - so sorry you were in the hospital! Colds can be the absolute worst. I sure hope it clears up very soon. You have upcoming surgery this week too, correct?
Amarantha, sounds like your natural hair is much better than mine ever was. 😀. Hopefully it will stop falling out soon and you will not need a wig.
Sue - how are you doing?
I have a gastroenterologist appointment tomorrow afternoon (I got lucky as someone cancelled.) This is a doctor that has been with me the last over 3 1/2 years since my belly mets were found by Mayo in May 2014. I’m taking my last 2 CT scans with me for him to review and then will be scheduling an colonoscopy (and maybe an endoscopy.) Hopefully, he can figure out this “incomplete distention” in the intestines and also, since I have belly mets, an endoscopy may be helpful too since I have had one in a few years now. I’ll keep y’all updated.
Goodnight all!
Southern ❤️
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