Halaven - Day 1
Comments
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Babs, thanks for checking in and for the well wishes. I'm following your progress on your trial thread and praying for great results.
Kandy, I get it about the TMs. Mine have been as high as over 3,900 about 3 years ago. It's sad as a little over a year ago, I was less than 400 on Xeloda and then they started quickly rising by a significant amount. I switched to Ibrance and they were somewhat steady after the significant increases on Xeloda but then never declined. Only increased more which is when I went to Halaven. Needed to go back to chemo. It's frustrating when you feel you work so hard and suffer such side effects, and then the TMs increase so quickly. It's a roller coaster ride for all of us.0 -
Getting the second shot of 5th round. I am going on vacation and the diarrhea after each meal caused by Halaven is the most inconvenience for vacation. Got some ideas from ibrance thread that some of them got a hold or extension of rest period for vacation or needed rest. So I asked Onc if I can skip some chemo schedules. Got approval to skip one round or one shot. After thinking, decided to skip just one shot, the day right before leaving for vacation. I want to be able to taste various pokes in Hawaii
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Cling. Enjoy that vacation in Hawaii. Enjoying Life is sometimes more important than a treatment
Bab
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Cling - awesome you are going to Hawaii! I need to plan a trip somewhere soon - need something to look forward to.
Kandy, how are you holding up? My second infusion of cycle 2 is tomorrow. I didn't think the first infusion of this cycle was as bad as in cycle 1. The metallic taste hasn't been as bad this time either. Maybe my body is adjusting? We will see how tomorrow goes. I am tired but I have been quite busy, as my Mom has been in town for 2 1/2 weeks.0 -
Hey SouthernSurvivor, I was thinking about you too. Second infusion for cycle one for me. Besides the fact of being overly tired, I really haven't had any side effects. No metallics taste, thank God. The tiredness is better than it was last week but I still fall asleep when I don't mean to. But like others has said, it might be from all the stuff my body has been through and not just the Halaven. If it works, then I would definitely be happy to stay on it. But, my hip and back have been hurting more, this in the past has meant chemo wasn't working. I hope maybe this isn't the case this time. I still don't have the report from my biopsy back, hoping they can tell me tomorrow. Good luck tomorrow, I'll check back in to make sure yours went well.
Enjoy the moment, praying for each of you.
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Bab, you enjoy your trip to Israel too!
Southern, do plan to do something you wast to do. A small goal or wish will make life easier under the chemo SEs. The real attraction in Hawaii is my son! Since he moved to Hawaii 9 years ago, we only see him once a year. I am excited to see him for 2017!
Kandy, it takes time for any med to work. Before my scan results were known I had lots soft tissue pains and TM jumped 300 points, I was pretty sure Halaven is not working. Scans after 4 rounds relieved me of the anexity. You only had one infusion. Be patient, and enjoy your SE free time. Hope you get the 2d shot smoothly.
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Kandy. I too though Halaven wasn't working as my TMs were going way up but the scan showed it was. Give it some time!!!!
Bab
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Second infusion completed. It went well except for the fact that it took the pharmacy forever to get it up there. Waited 2 hours for a 10 minute infusion. What a waste of time. Anyway, so far feeling pretty good. I am really hoping that you ladies are right and this one will work. Guess since I've not had anything to really work in a while, I'm feeling a little pessimistic. I did get my biopsy report back. Nothing has changed. I was really hoping maybe it had went to her2 positive but I wasn't that lucky. Anyway, I will trudge on down this path for now. Wishing you all the best, and always praying.
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Kandy, my infusion was uneventful too, which is a good thing. I had to wait a long time for them to do bloodwork, which was so annoying. Only one person working in a cancer center drawing blood at 1pm today. It was ridiculous. Of course, they had to check my bloodwork before I could get chemo. Surprisingly, my WBC was normal again today. I'm just not used to that after Ibrance! My RBC count was a bit low but not to bad. Came home and did laundry, which is never-ending. Otherwise, I was pretty inactive today. I need to try to do a bit more activity tomorrow. Enjoy your night. 💕0
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Hi Kandy and Cling - how are each of you feeling today? Today is usually one of the two days on my cycle that I just don't feel that great. Just blah. Sure enough, I woke up and threw up bile. Feel OK now.I haven't done that since I started Halaven, so not sure what that's all about. I plan to just stick around the house today. I ran a lot of errands yesterday and need a day to stay in, knock off some things on my "to do" list, and rest when I want to. Praying you two are doing well and the Halaven is working for all of us.
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Good mor SouthernSurvivor, I really hate you got sick this morning. My MO told me before I started Halaven to stay on Compazine the first 2 days after I get chemo. They give the first dose at the cancer center before I get chemo. Then I take it every 6 hours rather I think I need it or not for 2 days. So far, I haven't had any nausea or vomiting. So, maybe try that. I'm extremely exhausted again like last week just fall asleep sitting up. Since it has happened both times after chemo, I'm sure that is causing it. I hope your day improves. Praying for each of you
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Southern and Kandy:
My Halaven SEs have been very regular following a pattern after 6 rounds. With steroid and Zofran pre-meds, I am usually ok on the second day. The 3d & 4th are miserable with physical reactions. The energy level is low, taste buds are gone, and I have diarrhea after each meal. So, today is a miserable day, plus my office was out of power in the pm, so I came home early to nap! From the 5 the day on, the body starts going back to normal. Good thing is next week, we are all going on theoff week! More reprieve! Hope your SEs are tolerable.
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Cling,
Your schedule is the same as mine - 3rd and 4th days are my worst! Low energy and tastebuds are bad too, although I don't have consistent diarrhea. I also have the metallic taste in my mouth, but it hasn't been as bad as the first cycle.
Yes - glad we all have next week off. I know we all need it.
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hi sisters.....i havent checked in here in a while and was wondering if any of you are having blood issues from the havalen?.....i have had double doses of procrit at my last 4 infusions and 3 blood transfusions in the last 3 weeks....im so tired i just fall asleep sitting there like you are kandy....im still taking that parp inhibitor daily and am wondering if that may be the reason....im scared to drive now cuz if i get stuck in traffic i may just fall asleep lol....my last set of scans look stable so the drugs must be doing some good, i gave up my hair,lashes,and brows right before my daughters wedding so it better be doing something right....keep shining bright
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Hi Nan,
Sorry to hear you are so tired - that is not fun!
My bloodwork is actually quite good. WBC normal and RBC and hemoglobin are only slightly low. Looks much better than when I was on Ibrance. (Now, I definitely don't overall feel as good as when I was on Ibrance, but I guess it's not because of my bloodwork.) I hope your Onc can figure out what drug is the culprit.
You are right - drugs must be doing something good if your scans were stable. Whoo hoo for that! It's crappy to have to lose your hair. Third time for me and it never gets easier. Hope you have found a fabulous wig for your daughter's wedding!0 -
Hi Nan,
Sorry to hear you are so tired - that is not fun!
My bloodwork is actually quite good. WBC normal and RBC and hemoglobin are only slightly low. Looks much better than when I was on Ibrance. (Now, I definitely don't overall feel as good as when I was on Ibrance, but I guess it's not because of my bloodwork.) I hope your Onc can figure out what drug is the culprit.
You are right - drugs must be doing something good if your scans were stable. Whoo hoo for that! It's crappy to have to lose your hair. Third time for me and it never gets easier. Hope you have found a fabulous wig for your daughter's wedding!
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Hi all - how's the "off chemo" week going, Cling and Kandy?
Nan, thinking of you and hoping you are feeling better.
It's amazing how much better I feel on the off week! My husband and I are going on Sunday to see my older son who is 3 hours away at college. I'm looking forward to getting away, even though it's just for the day. Will be so good to see him!
Praying for each of us that Halaven is doing its job! Hugs to you all!0 -
Days on chemo off week always feel wonderful! Southern, enjoy your trip to see your son.
I will have my first shot of next round on Tuesday because Monday is a holiday for my cancer center. One more day on the off week! Then, because I am going to visit my son for 10 days, Onc allows me to skip my scheduled second shot, so that I will have two weeks off chemo, hurray!
Kandy, have you regain some energy on this off week?
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Cling, l guess I might have a tad more energy. This week hasn't been so grand for me. My back and hp has been very painful for the last week. I haven't been able to sleep in our bed. Only can sleep a hour, then it wakes me up. Been cat napping sitting on the sofa. So I am pretty exhausted. I went to the cancer center today. MO increased all my pain meds and he sent a note to my RO to request him doing radiation for pain management. Hopefully that will help. I hope everyone is doing great. Keeping all of you in my prayers. You are never alone, he is walking beside you every step of the way
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Cling, glad you are skipping your second shot. We do have to balance things in life and it will be so worth feeling well on your vacation. Have a wonderful visit with your son!
Kandy, I'm so sorry to hear that you are in such pain. Chronic pain is miserable. I'm glad your MO is on top of your condition and exploring your options in addition to increasing your pain meds. Saying a prayer for you right now for pain relief and wisdom as your move forward. Please keep us posted.
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Hello ladies - I join the Halaven thread today on behalf of my wife. He was diagnosed with bone mets in Feb 2016 which progressed to her liver in Jan 2017. Halaven will be her 3rd line of therapy after Ibrance / Letrozol and Xeloda.
It will be great if you can share some experiences like how long you have been on Halaven, how tolerable it has been so far and if anyone experienced hair loss.
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LMWL. I was on Halaven for a short period but it was working and I found it quite tolerable. Since I had recently gone off Taxol before taking Halaven my hair was growing back so I didn't notice hair loss. I am now in a study for the mutation I have which consists of taking pills-no chemo. I made the switch because I was going to Israel for 2 weeks ( I'm here now) and to Paris in December for 3 weeks when my DD gives birth there. Trying to work out my chemo schedule while away was just too much!!! If this current treatment fails me I'll go back to Halaven. Fingers crossed that it is working and fingers crossed your wife finds Halaven easy to tolerate and successful at keeping this monster we have at bay!
Babs
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Thanks Babs - I remember you from bone and liver mets thread. Hope you are doing well and the trial is giving good results. What trial are you on and what mutation is the treatment based on ?
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LMWL- I'm in a clinical trial of GDC0077. Here's the link ( hope I did this right!) I find the pills easy to take. My first few days on them I felt a bit queasy, but not anymore. I'll know if it's working when I get my next scan which is 8 weeks after I started this trial. Fingers crossed!
https://clinicaltrials.gov/ct2/show/NCT03006172
Babs
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Good luck Babs. Unfortunately my wife does not have the PIK3CA mutation, hence not eligible for any related trial.
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LMWL. Are there other trials she could qualify for?
At Mskcc they seem to always have something. It's just a matter of finding the right one for your wife
Babd
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Babs - At this time, her MO is not talking about trials. She seems to have a ER+ disease that has very few mutations (if any) and one that grows slowly, but it grows. So I am hoping there may be some good trials for her but I am still searching.
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Hello, I am new to this forum and live in Western Australia. I am about tp start Halaven on Monday after being one of the small percent of the population that cant metabolise Xeloda. Hoping that SE are tolerable as I am a single mum to a large family. Any advice and feedback would be great.
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Hi all and welcome LMWL and Tennille -
LMWL and Tennille, for some info, I would suggest reading the posts starting on page 55 (posting dated August 8, 2017 to current.) I posted some info for Kandy who was just starting out at that time. Sorry, I'm not sure how to copy it over to a new post and not feeling well enough today to type it over again. Hope that helps.
Kandy, how are you feeling today? Are you still having pain?
I did want to share some good news and give some hope to those new to Halaven. My TMs have dropped over 50% after 2 cycles on Halaven. (One cycle being 2 weeks on, 1 week off.)
This past cycle was a decrease of 400 points - the largest cycle decrease I've ever seen for me on a hormonal or chemo. Yes, my TMs are high, so hopefully this news can be encouraging to others that if one kind of treatment doesn't work, another one just may. This is my 7th kind of chemo/hormonal treatment in 3 3/4 years. Needles to say my MO is thrilled right now with these results and so am I. I'm happy to see some good news FINALLY after a lot of failures.
LMWL - I did shave my head after just a few weeks on Halaven. I have thin hair to begin with and it starting coming out like crazy. I would say it's a good likelihood that your wife's hair will thin a lot, maybe not be bald completely. If she has thick hair, she may be OK for awhile. Not the case with me.
Take care all - hope you are able to enjoy this day. 💕0 -
Hey SouthernSurvivor. First of all, a huge congratulations on your tumor markers, that is awesome news. Definitely gives me a lot of hope. They are drawing mine next week, I pray I will have similar results. I'm still hurting pretty bad. I went today to see my RO. I will start radiation in 2 weeks to try to help with that. I'm hoping for relief soon. I'm taking OxyContin 80mg, 3x a day, dexamethasone twice a day, and dilaudid. I can take it every 2 hours. It's a wonder I am awake, lol. I am thrilled for you, so happy. Take care, enjoy the moment. Praying for everyone.
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