Halaven - Day 1
Comments
-
SS thats great news about your TMs. You should definitely celebrate!!!!
Bab
0 -
Oh Kandy - that is a lot of pain meds! So sorry you are dealing with this. I pray that radiation can offer some great relief. I remember getting dilaudid in the hospital through my port when I had my major stomach surgery. That med is strong and worked well when I really needed it.
Babs - thanks and great to see you again here! How was your trip?0 -
Kandy and Southern:
I hope you are doing well after your second shot of the cycle. Off week is coming up!
My last week was physically very miserable. Upset stomach and diarrhea filled the 6th and 7th days, which I was supposed to regain my appetite. Can't even look at food
Fortunately, I planned to skip the second shot because I am going on vacation. Today my GI system finally quite down. Hopefully I can handle the 10 plus hours on flight.
0 -
Cling - so sorry this last cycle caused issues for you! Before your vacation is not the time for Halaven side effects to go rogue! I'm praying you have a good flight with no crazy side effects and that you can sleep. Your system will calm down the further you are out from the infusion - thanks goodness. Really hoping your trip is fantastic and you are able to make some fun memories with your son!
My infusion was pretty uneventful today. Was quite tired, but I did get less sleep last night. Hoping all goes as it has the past infusions. Tolerable and I know what to expect. Of course, the only good thing about the 2nd infusion on a cycle is that I'm one week closer to my off week.
Kandy - how are you feeling?0 -
Accidentally hit submit too soon.
I want to say I'm praying for each of you daily - for physical and mental healing. This MBC wreaks havoc on us in every way!
Sending much ❤️
0 -
Hello everyone, thankful 2nd cycle almost done. Looking forward to week off. The last couple days my taste has changed quiet a bit. Anyone else have that trouble? It's getting difficult to eat cause it doesn't taste right. Everyday seems to be increasing with pain. Im starting radiation next week on 2 places in my back. But this morning I woke up to lots of places hurting. Ribs, sternum, neck. The list goes on and on. Wonder if they can radiate my whole body, lol. Im actually feeling a little on the down side, the situation just seems to get worse and I'm not catching a break. Trying to keep faith that I know God is in control and will be walking beside me all the way. I also wanted to let you know my hair is growing back. It had started growing a little before I switched to Halaven but it's growing good now. Maybe 1/2 inch. Excited to get something back, but worried about does that mean Halaven isn't working, hmmmm. Hope everyone is doing well. My thoughts and prayers are with you all. May it be in his plan to find a cure soon, and spare us all. Keep the faith
0 -
Hi Kandy -
Sorry to hear about all of your pain. Praying that radiation zaps those cancer spots causing all that pain. I have a metallic taste in my mouth most of the time. Food still tastes OK but a bit off. Even water tastes more metallic, which is so annoying. I know Cling's taste buds are affected by Halaven too, so this seems to be another side effect we have to endure.
After a few weeks on Halaven, my hair started falling out a lot. I couldn't stand it after a few days and I shaved it down to about 1/4 inch or less. Now it's growing. The problem is I think with Halaven, I wasn't going to go bald but just have much, much thinner hair. That would have been OK if I started out with thick hair. Unfortunately, my hair is pretty thin to begin with, so thinning with Halaven made it look terrible. You could see my scalp. So, I'm wearing a wig now or mostly, a cotton cap. My hair is growing and the Halaven is working so far based on significant decrease in TMs, if that makes you feel any better. My MO does my TM bloodwork after every cycle, so I'll have them tested again the week after next.
Take care, Kandy. You have been through a lot and deserve to catch a break. Will pray for healing and pain relief - we all can use that! 💕0 -
Kandy - my wife will be having her 2nd infusion of halaven tomorrow. Even she has started noticing loss of taste. So I am guessing it's just a nasty side effect from the treatment
0 -
Kandy:
During the infusion week my taste buds are gone for at least 4 days, sometimes the entire week. Even water tasted awful. My hair was never totally gone after 18 weeks of Halaven. It is very thin, but still too much to put wig on, so I just let it be (better than most bold men). I also thought there are some new short strand coming out too. Your experiences just reaffirm my hope. Wish RO will be able to relieve your pain.
0 -
hello everyone, just wanted to check in with a update....i was supposed to start my 6th or 7th round of halaven on friday (chemo brain) but the doc ordered 2 more bags of red blood instead...that makes 6 bags in 4 weeks....since no one else seems this low , i'm thinking it must be the parp inhibitor that is doing it or maybe something else... my doc is making me get a bone marrow biopsy done on thursday, this has me worried....has anyone else had to do this?.....can i have mets in my blood?.....my hair is showing no signs of growing back in fact my whole body is getting smoother but my taste buds are doing ok....i had my brain scan on friday, will see the doc tuesday but no phone call yet so thats good...stay strong my friends and i will try to do the same, its hard when you're so tired all the time....my body is tired, not sleepy just tired....btw DDs wedding was beautiful (wish i was too)
0 -
Hi Nan -
So glad you checked in and happy to hear that your DD's wedding went so well! I haven't had an issue with my RBC or hemoglobin - they are a bit below normal but not bad. What does your MO say? I do know that will give you such incredible fatigue. I'm sorry you are having such a difficult month - 6 bags in 4 weeks is a lot!
My experience is that I did have a bone marrow biopsy in late 2013 when my MO was trying to determine why my TMs were going up and no cancer was showing up on a CT scan or bone scan. The doctor who did mine was wonderful and I will say the pain was not near what I had conjured up in my mind. They did find from that bone marrow biopsy that I had 5% cancer in the sample and I was then officially diagnosed Stage IV and started Faslodex shots. (Little did they know at that time that the major culprit was the breast cancer metastasizing to the lining of my stomach wall. That took another 4 1/2 months to find that out and then I was put on Abraxane.) I would ask your MO what exactly the purpose is for your biopsy and would your course of treatment change if they find cancer in the sample. My case is obviously different than yours as I hadn't been diagnosed Stage IV yet. Just wondering if this procedure is really needed? You are already on IV chemo, so I would want to know what your MO is going to do differently if the sample is positive.
Please keep us posted. I'm saying a prayer right now for you tonight.
Sending a big hug to you!0 -
Hi Kandy - how is your radiation going? Is your pain still as bad today? Praying that you have begun to feel better.
I started my 4th round of Halaven yesterday. TMs went down 41 points (6%.) Not bad but after great results from my 1st two cycles, I was honestly hoping for more. Metallic taste is back again - ugh.
How is everyone else doing? I feel so much better on my off week that I hate starting up again. I have a busy few weeks. I'm helping to host a bridal shower on Saturday- 35 women expected and we are doing a full breakfast. Fortunately it's not at my home but we have done a lot of planning! Then next Friday - Sunday is my church's women's retreat. I debated whether or not to go as that will be my 2nd infusion week of my 4th cycle. I do love these retreats though that are only ever other year, so I'm going to plan on going.
Take care all - praying that Halaven is working for each of you. 💕0 -
8th Halaven infusion today. I'm hanging in there. No pain - just tired. The only thing good about the 2nd infusion in a cycle is that the following week will be the off week.
Would love to hear how you are all doing. Praying for good days for all of us.0 -
Hi Southernsurvivor,
I'm actually feeling better than I was. My upper back doesn't really hurt at all now, my lower back still does but definitely more manageable. I met with my MO today. I will get scanned the end of next week to see if Halaven is doing any good. We are anticipating progression again. My tumor markers have been spot on every time. Once again they doubled, now I'm over 3400. He wants me to try Keytruda, although it is only being given to triple negative patients. He is starting the ball rolling to see if they will give it to me. I'm hoping they will cause I feel like I'm running out of good option. So far, nothing has worked since hormonals stopped working. I think I need more than prayers now, I need a miracle. Praying for each one of you, that treatment works exceptionally well. Hang in there ladies.
0 -
Oh Kandy, sorry about the TMs. My TM numbers have always been right on too. So weird how these chemos work or don't work - seems a complete crap shoot to me! My MO is looking at Keytruda for me too. I thought that you needed to have a certain mutation if you were ER+ and my MO needs to see if I have that mutation based on my last tissue sample from Mayo 3 years ago. I sure hope someone still has that sample. I was way too sick to even think about the sample at the time.
Hormonals seem to have stop working for me too. I have too long of a story but I personally think Faslodex jump-started my cancer progression twice. I used it when I was first diagnosed Stage IV and then my duodenum was blocked 2 1/2 months later. After other failed IV and oral chemos, 3 years later I was put on the Ibrance/Faslodex combo and 3 1/2 months after that I had progression via CT scan. The reason we went back on Fas earlier this year was due to the Guardant360 blood test, which basically said the Ibrance/Fas combo would work. Well, it was totally wrong! Ugh.
Keep us updated - sending virtual hugs your way
0 -
hello.....i'm off all treatment for now (very worried bout that).....the results of my bone marrow biopsy showed that i have a rare disease called "Pure Red Cell Aplasia" it means my bone marrow stopped making red blood cells completely.....there is a chance that my meds are causing it so they stopped it all and are running a bunch of blood work....the doc doing the biopsy had a hard time finding marrow and it really hurt but i doubt they could have discovered it without the biopsy....now i understand that the marrow biopsy will get results right away instead of checking dozens of issues in the blood and maybe still not seeing it...
i will check back in when i know more.....has anyone ever heard of this PRCA?
0 -
Nan, so sorry to hear about your RBC disease. I have never hear of this before - so glad you did get the bone marrow biopsy for diagnosis. Your doc certainly knew what to do. Truly hoping that your meds are causing it and by stopping them, it can go away.
Please keep us updated when you have more information. I'm saying a prayer right now for you for increased strength and energy. Hang in there, dear Nan!0 -
southernsurvivor.....thank you so much for your prayers....i know that is what is keeping me from totally freaking out(being on prayer lists), i must say i've been unbelievably calm about all of this since dx and the only way i can explain that is the power of prayer so thankyou
0 -
Hi ladies. Joining you here now and hoping for my second treatment of the first cycle tomorrow. It was supposed to be Tuesday but neutrophils tanked from 631 two days prior to 20. Needed to be close to 1000. Anyone else have this issue? We'll add neupogen next time.
I also developed a tumor fever as result of this med which points positively toward its effectiveness though I spent a few days in the hospital ruling out infection.
I'm a bit confused on the matter of hair loss. Is it complete or just thinning. What about lashes and brows?
As for metallic mouth...definitely have that. Makes me want dessert all the time. And I was doing so well with cutting back on sugar.
0 -
Hi Kaayborg, so glad you found us! Sorry to hear about your neutrophils being incredibly low - I have not had that issue. I did have a low fever my 1st cycle 1st infusion Day 2, but it went away with Tylenol. I never had it again.
From my experience with the hair, I don't have total loss, but it is extremely thin. I guess they call this "thinning" but I may as well be bald as it doesn't cover my scalp at all. (I just finished my 4th cycle (8th infusion) and next week will be my off week.) My eyebrows are barely there - almost gone. Still have some eyelashes left, but at least 1/2 gone. I actually shaved my head after a few weeks on Halaven as my hair just started falling out in strands. It has started to grow back but as I said, so terribly thin that it really doesn't matter. I wear cotton caps or my wig.
I still have the metallic taste in my mouth. Does make me want sugar too. I do suck on lemon drops, which can't be good for my teeth but makes me feel better.
Keep us updated on how you are doing. Just a few of us on this thread.
Hugs to you all today!0 -
Kaayborg - 20 is a real low number for ANC. You should be really careful and avoid external contacts. It seems you were not given neupogen and if thats the case I am not sure why. My wife's ANC dropped to little over 1000 (or 1.0 in some charts) and the MO immediately gave her two shots of neupogen over next 2 days. That way her ANC is still low but holding above 1.0.
Her hair loss is almost complete after second shot of Halaven. Eyelashes still remain - for now at least.
0 -
That's interesting lmwl. I have neuopogen leftover in my fridge from carbo but was told not to use it. Not used to treat low counts but to prevent them so we'll add next timeout this time I have to wait. I'd like to have used it right away as I would have waged good money they'd end up too low. Hmm....
I'm also confused a bit between ANC and what is now reported in my labs as neutrophil segmented. Anyway that is now what should be 1000 and is 20. Lots of questions to ask today. Not scheduled to see MO but she texted and told me to ask to see her.
0 -
Kaayborg - what's the standard range for neutrophil segmented if thats what they are measuring ?
From Wikipedia:
"Absolute neutrophil count (ANC) is a measure of the number of neutrophilgranulocytes (also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood."
So it seems ANC is count is one way of measuring segmented neutrophils.
If you have issues getting Neupogen approved from insurance, ask them about Granix or Zarxio. Its the same thing. If fact my wife once got Granix and got Zarxio the other time.
0 -
Thanks. I've got worked out now what result I'm supposed to be looking at for ANC. They got a new system so it is called something different...segs plus bands, absolute. No matter really 30 is the ANC and that is still crazy low. Waiting for today's labs now. Gonna ask again about neuopogen to treat versus prevent.
0 -
Since my wife is pretty new to Halaven, can some of you share how long you have been on this drug ? Months, 6 months +, years ?
0 -
lmwl...I'm interested to know answer to your question too. I did ask MO to give her best approximation as to how long a good response to eribulin might last and she said 9 to 15 months...and so of course I do hope to beat that. Don't we all.
Congrats to me, my liver enzymes are normal again. MO said that was the fastest response to eribulin she's seen. Helps to counter what was also probably the fastest progression she's ever seen. Gonna try again for the 2ND treatment on Tues. 90 anc today. She said using neuopogen to treat rather than prevent simply isn't effective. Sometimes it's done in extreme cases like sepsis but even then it doesn't do much... ??? Ultimately I trust her so we wait.
0 -
Kaayborg - congrats on your test results. As TNBC is infamous for growing fast, it is also equally famous for shrinking even faster. I am hoping that all of us on this thread will be able to take advantage from Halaven for a long time to come.
I hear your MO's logic on Neupogen. End of the day as long as you are clinically doing ok and she is there to take care of you, thats all that matters.
One of the TM tests for my wife came back and its showing a downward trend. Waiting for 2 more. That gave us some relief. If scan this month end confirms stable disease / shrinkage, we have plans for stopping Halaven and reconsidering hormonals / targeted therapy at that time. I think in your case if you continue getting significant benefit from Halaven, you may want to look for some promising TNBC trial (there are many).
0 -
LetMyWifeLive:
14 months. Gave me the lowest TMCs I'd ever had - 27, for months! I run through treatments, so bets are others will get more.
0 -
Thats great blainejennifer. Really encouraging. Thanks a lot and wishing you many more months / years on your current treatment.
0 -
Hi all -
I wanted to check in to let you know I started cycle #5 of Halaven (infusion #9) today. Also, found out my TMs decreased 94 points on cycle #4. On the first 4 cycles my TMs have decreased about 63%, so I feel like I've finally found a treatment that is working! Just watching out for neuropathy.....
I'm tired today but finding this chemo tolerable so far. Have lost most of my hair, eyebrows, & eyelashes. The actual chemo and premeds plus extra fluids only take about an hour (although the waiting time can double that!)
How is everyone doing? This thread has been quiet for awhile. I know Kandy has stopped Halaven and has moved to another treatment. Look forward to hearing your current experiences.
Praying for you all - hoping to hear more successes on this chemo!
Take care,
Sheri0
