Halaven - Day 1
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thanks, danishgirl! Appreciate your post and happy about your NED status! Interesting that you're back and forth between halaven and AI's. Hope halavan gets me to NED. Have had just two treatments with no serious se's. No hair loss as yet. But you're right about the fatigue. If I close m eyes, I find I'm catnapping! I can deal with that!
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Hello to all,
I hope everyone continues to do well on their Halaven!
This is some interesting news/information about Halaven, I like the part where he says "erubilin appears to have some novel biological effects...", hope that means stronger cancer killing properties!
Dr. Christopher Twelves on Eribulin Mesylate in Combination Therapies for Breast Cancer
http://www.targetedonc.com/videos/christopher-twel...
Hugs to all!
Maureen
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Maureen, Thanks for the link to Dr. Twelves. The reason I was started on Faslodex and Halaven at the same time was because my TM's were going up and my scans were showing progression. I was very sick either from the abdominal mets or Afinitor. I wonder what combinations Dr. Twelves has tried. MaryAnne
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well, tomorrow is the 1st treatment of my second round. My hair is coming out in the bed and the shower, I am trying to comb it once a day so I can keep it as long as possible. Fatigue is my worst side effect. Craving cookies, too, but since I need to gain weight I won't worry about that. Nice to see some activity on the thread
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Hi Gatorgal-
I agree, it's nice to see some postings here- was starting to feel alone! Glad (and sorry) to have some company....I've been getting about 9 months out of my treatments, so fingers crossed on this one- my 1st scan on this onewill be late Feb/early March sigh. I have the fatigue issue too- but still tolerable. And I am not combing my "hair" much these days either- that made me smile when I read that.
Danishgirl, I am I encouraged to hear about your combo treatment. Thanks for sharing!
Everyone stay well
Maureen
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I sure would like to get 9 months out of a treatment and I would really love to see NED in my future! I will be scheduling a scan for the 27th of this month and hope for some good news. Hoping to soon have another biopsy to send for genetic testing to see if my tumor's characteristics have changed. Maybe I'll be able to have targeted therapies in my Arsenal for down the road. My husband is out of town for a couple of days so I am really taking it easy. Washed my wigs last night and got them ready! Love being bald in the winter (if I have to be bald) so I can just throw on a wool cap! A good weekend is wished to all
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So glad to see this thread. Will begin Halaven in two weeks. Back read posts and they have been so helpful. My first occurrence of breast cancer was Dec. 1996. Was cancer free until 2012. Then here it raised it's ugly head again. First in right breast (mastectomy) supposedly cancer free. Next again in right breast area (changed Onc, so glad I did) had chemo was cancer free. Then showed up in my lungs stage IV. Had a different chemo and was once again cancer free. Next showed up in bones and lungs again. Did a trial. It worked amazingly. All cancer gone. Then it stopped working around June of 2015. There were 2 lesions on my liver. Started on capecitabine. Had nothing but trouble with this one, including blood clots in December and it did not work. So now I am going to start the Halaven.
Would very much like to join your group. Hope I did not give more information than you needed. Just felt good to tell it.
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Hi woodburns, so glad to see you posting. I've only been on halaven for a couple of months and there's not a lot of posting going on, I'm really glad to see you! You can't ever give too much information! No worries there. Do you remember your other chemo and what you had on the trial? I've had lots of different chemos. I think you can see them when I post. I was hoping I wouldn't lose my hair but a couple of weeks ago it started coming out. A lot came out, then it stopped. So I guess I've got half a head of hair. Very, very thin. Can't go without a hat or wig. Strange that it just stopped like that. I had a cat scan today and get results tomorrow. Goes without saying I'm hoping for good results. In my heart I feel it's working because I am having some side effects. Specifically major fatigue and minor constipation. I feel tired all the time. Was your original cancer in your right breast? I'll check back and let you know my cat results. Again, welcome! Sorry you're here though, if you know what I mean
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Thank you for the welcome GatorGal! Your treatments do show up when you post. How do you get the treatments to post like that? Please do let me know your cat scan results. Will say prayers that it is all good.
Had to go back through my 3" file to find all my treatments. I have a tendency to get all these treatment names confused. Going through the file did me some good. The following are my treatments:
1996 - Ductil Carcinoma insitu - Left Breast Mastectomy No chemo, no hormone blocker
2011 - Breast cancer reoccurance Right Breast. Right breast mastectomy no chemo, no hormone blocker
3/13/2012 - Breast cancer reoccurance bones and lungs. Docetaxel, Cyclophosphamide - bones lungs
8/14/2013 - GDC-3200-PIK3 phase 2 pill form, Xgeva inj. Fulvestrant inj. - 2 year trial - tumors in lungs and bones. SE: Drug induced Diabetes (wound up on insulin by the time the trial drug stopped working.) once I stopped the trial drug Diabetes is gone. Myopathy hands and feet. Diarrhea. Hair loss.
5/29/2015 - 2 metastatic lesions liver - Vantictumab + Paclitaxel - trial, SE: Myopathy hands and feet. Did not work for me. Fatigue. Did not work for me.
8/25/2015 - 2 metastatic lesions liver - Capecitabine pills. SE: Myopathy in feet and hands, blood clots in legs and lung, shortness of breath. The blood clots were the first time I have ever been hospitalized for a SE. This one did not work for me either.
Around 2/8/2016 - 4 lesions in liver - Halaven every other week.
All the treatments up to the 5/29/2015 treatment had cleared all signs of cancer. But then I would get mets elsewhere. The
I lost my hair with a few of these. Have been wearing wigs for years. I finally have hair growth of about 3/4 of an inch and I am sure it is going to fall out again. So getting out my trusty lint brush. I run it over my head when my hair starts falling out. Feels good and I don' have hair all over the place. My husband said he likes me in the wigs because instead of taking close to an hour to do my hair (my hair was my biggest vanity and every hair had to be in place) I pull on a wig and go. LOL!
Well I have probably worn you out with my book. Will be watching for your CT-scan report.
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Very strange, I posted earlier and it didn't go through. Of course I can't remember what I said! I got a good scan report. There has been some Shrinkage in the right lung and the Liver mets are unchanged. I'm happy with stable!! Onc will keep me on halaven since it's obviously working some magic. My counts are all low so he's going to stretch treatments out a bit. Instead of two weeks on, one week off I'll go to two on and two off. Can't say I'm not happy about that. I've been so tired all the time! I didn't sleep at all last night and I'm guessing I was worried about the scan. I usually don't stress out like that but I know I will sleep well tonight. They are scheduling a liver biopsy next week and will send it off for further testing, Think targeted therapies. Fell as,eep typing so going to bed. Good night, all
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So happy about your scan GaterGal. Shrinkage is great and Stable is good. After reading all the posts, I almost can't wait to get started. Isn't it strange that we dread the side effects and then we are relieved when they show up because that lets us know it is working? How have your blood sugars been on this? My biggest fear is getting Diabetes with this.
Because I am on Warfarin, I had a Blood test for INR on Monday and it was a 4, so Onc had me not take the Warfarin yesterday. It is supposed to between 2 to 3. I had blood tests this morning for INR. They called and said it was a 1. Not good. Definitely don't want blood clots again. So they have changed it to 5 mg Mon., Tues., Thurs., Fri., Sun. Then on Wed., and Sat. take 7.5 mg. Hope they find the right dosage soon. Sure do not want to go back into the hospital again, but then who does? Still can't believe I was walking around for almost a month and a half with blood clots in legs and lungs before they did the PE test. God must have something I still need to do.
Need to go, forgot to sew a small pillow for a friend of a friend. She is having a double mastectomy tomorrow and the pillow is to go under the seat belt at the shoulder to keep it off the surgical area. I had one given to me for that and it sure did help.
Praying that everyone has good news on this treatment.
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OMG, Woodburns, I didn't realize how many clots you had and for how long you walked around with them. That is some scary stuff. Okay, so I have to ask what might be a stupid question, but what is INR? My sister just had knee surgery and ended up with a lot of clots in her lungs. Under control now, thank God. I pray you don't have problems with halaven and that it works for you. I had to buy one of those pads you Velcro around the seat belt because of my port. The seat belt goes right across where mine is and really bothers me. How nice of you to make pillow for people. I enjoy sewing but not that much. Is myopathy the same as neuropathy? I have had minor neuropathy issues since 1987 when I had chemo the first time. My onc can't believe it hasn't gotten worse with all the chemo I have had
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So glad your sister's clots are under control. Clots really scare Drs because only so much can be done.
INR is a blood test to see how long it takes for your blood to clot. The lower the number the quicker it clots. The higher the number the longer it takes to clot. Between 2-3 is optimal.
I had to go back and read my posts. I miss wrote. I had neuropathy not Myopathy. Neuropathy affects the nerves, Myopathy affects the muscles (weakness).
I have never had a port. I am afraid it maybe coming soon as I only have one arm that can be used. This has been going on for so long that I feel nothing when they do the stick. Now everyone heads right for the vein in the bend of my elbow. This irritates my phlebotomists that draw my blood for tests. Did you have any problem with the port? Do you still have it in? How long has/had it been in? My Onc does not like them but will use them when there is no other choice.
I am going to say good night and praying all get good scans and TMs.
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Woodburns, the port is the best thing I have ever had. I love it. Hate getting stuck. I had chemo the same day I had the port put in. Have had it in nearly four years. Can't imagine why your doctor wouldn't like them. It is so easy to have put in and doesn't hurt at all when they stick you for the chemo. You would not have any regrets if you got one. Thanks for the explaining the INR! I've had neuropathy since 1988 but it hasn't gotten any worse than it was then, I'm lucky with all the different chemistry I've had that it is still pretty mild. Still chemo tired today but worked on taxes so didn't waste the entire day! Hope everyone has a good weekend!
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Thank you GaterGal for answering my question about the port. How do you keep it from getting wet? Does it ever cause you any pain? How do you keep it clean? I am debating about asking for one. Would love to have enough information so I sound intelligent when talking to my onc. Would anyone else that has a port please tell me about your experience with it?
Today I did laundry, dusted the living room and prepared supper. So sad that I am excited about doing just those things. I have been off the capecitabine (Xeloda) for a month and am still fatigued. It was 70 degrees today. Just have to love Texas weather. One day we are bundled up and the next in shorts. LOL!!! Sat out side for a few hours watching my DH building a wood shed/storage shed. Enjoyed today so much. Hope everyone else had just as good a day as I feel I had.
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it's actually placed under your skin so it never gets wet. It is covered totally by your skin. You don't have to worry about cleaning it either. I once had a Hickman catheter and that tubing came out of my skin and had to be cleaned and rebandages every few days. I would not ever want to go back to that. Also had to flush it with heparin. The port takes no care. The nurses access it for my bloodwork and leave me hooked up for chemo. It doesn't hurt at all when they put the needle in. Honestly, I don't feel a thing. Some people get anxious about it and apply topical lidocaine before they get accessed but I have never needed it. They do flush with heparin after chemo before they pull the needle out. And no, that doesn't hurt either. I reread my last response to you and where I said I hate getting stuck I meant in the arm ....not the port! I hope others will respond to you. I know the pros and cons of ports discussion has been had but don't remember which thread. I do think it would make your life much easier!
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Thank you GaterGal. I did find a thread. There was also a link to a gentleman's blog where he showed he had one. Looks like they have come a long way. I thought that it was like a tube that hung outside the skin. And had to be taped down. My DH is not too crazy about me getting a port, but, said whatever I want to do he would back me. Silly honey, he has always backs me no matter what.
Tomorrow I go for Blood work, CT-Scan, and EKG for the trial. Will see the PA also since I saw my onc just last week. Seems strange it is a trial but it is already approved by the FDA.
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What you are thinking about was the Hickman catheter. I had one back in the 80's. I didn't like it much but it still beat getting stuck. I couldn't take a bath and had to be careful in the shower, I was always afraid I would accidentally pull it out in my sleep. Hope your testing all went well today. I had a delightful day ... Worked on taxes! Yuck
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Found out I still have the blood clot in my lung. The PA says it could take 6 months for it to completely dissipate. So I am going to put off the port. All I need is to have it let loose while in the table.
Looks like Monday before I find out about my scan. But that is fine. I have gotten to the point it is what it is. Besides I have been off chemo for about a month so expect to see some growth.
At least you got your taxes done or maybe partly. More than us
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dang, these blood clots are scary. My sister got blood clots after her knee surgery. It seems to take a long time for them to go away. I had a chemo break and had progression when I was scanned but the second scan, after just two rounds of chemo, saw some shrinkage. Wishing you well. Mo day seems like a long time to wait
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Well as I thought, the lesions on my liver have grown, and a few more have showed up. Also a lymph node around my airway is enlarged. But considering I have not had chemo since about the first week of December it was too be expected. I did get a call today that I start Halaven on Thursday. Labs at 8:00, see onc. at 8:30 and Havalen at 9:45.
Would you please tell me how you felt the next day after receiving Havalen? I would like to let work know whether or not there is a possibility that I may miss Friday too. I know I have read this before when I was going through them all, I just do not remember what was said. I will admit I am little nervous, but I don't like the alternative.
Thanks in advance.
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Woodburns,
I'm finding halaven pretty easy to take. My biggest issue has been fatigue. I could close my eyes while typing this note and fall asleep. Perhaps it's because my counts are low. I have chemo today. The decade on they give me as a pre treatment usually causes me to lose a night's sleep. I generally try to take a nap as soon as I get home, knowing I will probably be up all night once the decade on kicks in. If I don't get to sleep too early I ask my husband to just let me sleep. Even if I wake up at 3 in the a.m. It's better than losing a whole night. I have no nausea but do get constipation with halaven. Always better than the big d in my book. Will look forward to hearing how you do. Have really had no other issues. Had the liver biopsy yesterday and woke up at 5 this a.m. With pain. It has pretty much subsided with a couple of oxycodone. They will be sending tissue samples for testing to see if I qualify for targeted therapy, I am praying for that!! I'm sure it will be weeks before I hear anything. I am hoping the halaven knocks your liver lesions right back down and that you respond BIG TIME to being back on chemo.
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GaterGal,
Thank you. I did tell work I may not be in on Friday. Monday is a holiday (I work for a school district). So hopefully this will give me a good idea how it will be. I have gotten all my tools together. Lint sticky roller for when hair starts to fall out, nausea meds, hydrocardone, stool softener, Claritan, Tea tree oil, and bag balm for feet and hands. After treatment my DH is going to take me for Chinese food. It will probably be the last I have. For some reason every chemo I have make Chinese food taste really nasty, worse than the other foods that also lose taste. Not sure why.
You said they did a biopsy to see if you qualify for targeted therapy. Does that mean they are checking to see if the cancer you have in your liver is different from your breast cancer? As good as my onc is, I have not had any more biopsies since the cancer was in my breast. I am going to ask her about it. The Halaven is still working for you isn't it?
Going to head to bed. Getting up early as it is a little over an hour drive to onc.
Thank you for being here. Are you and I the only ones left on this thread
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The halaven is working. Last ct a few weeks ago showed shrinkage in the lung and the tumors in the liver and pelvic bone were stable. That's good news as far as I am concerned. I met with a specialist last November at Hopkins. She recommended the new biopsy. There's always a chance that the cancer is different. Either way, she thinks I should be looking at targeted therapy down the road since I have gone through so many chemos. She had another recommendation but I'm having brain freeze again and can't remember. I hate when that happens. Hope chemo goes well for you tomorrow. I like how fast the infusion is. Do you get decadon as a premed? That usually keeps me up at night but I'm feeling like I could sleep tonight. Hope so. Smart to take off Friday. Why push it. That will give you time to pamper yourself. You sound ready. I always coat my finger and toenails before chemo too. Don't know if it protects or not but worth a try! Will be thinking of you
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just read pbj's post again. It is ixempra that they think I should try next. Scuttlers was on it and is Ned
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Hi Gatorgal and Woodburns,
I am still here, I guess I have been lurking with not much new to add! Sorry, I am happy to see some discussions happening! I have been on Halaven since beginning of Dec and have my first scan beginning of March- so not sure how this is working. My fingers are crossed! So far se's not too bad- fatigue mostly, lost some hair but not needing a wig yet, and I am working full time and travelling with work. Nails are fine, no other real issues.
I just got my genetic test results back from my biopsy and they say "no actionable mutations" so no targeted therapy options I guess. I will have to discuss with my med onc when I see here next. They have said they would go to Ixempra as next option for me as well.
I hope you both continue to do amazing on Halaven!
Take care
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Hi Modum! So glad to see you are here too. So glad your SEs are not too bad. Also glad to hear you are working full time. I need the insurance and I am working just because of that. Plus the job keeps me busy and in a way keeps me sane.
GaterGal great news to hear Halaven is working! The ixempra, is this something they are going to add or would it be the next course of treatment?
I got fluids, manganese (spelling), then the Halaven, then Xometa. I did sleep a lot today. About to go to bed, getting droopy.
All this time I had thought I only had about 4 lesions on my liver. Today because of some of our questions my onc showed us the actual pic from the ct scan. I have small lesions all over it. Why don't they put that in the ct scan report? Apparently they only report changes. Also found out that the bone leasions are back. My DH is crushed. He broke down several times today. Oddly enough my spirits are still up. I feel like I should be scared, but seem to be very calm about it so far. If Halaven works as well as I have been seeing, then my mets should shrink or at least stay stable. I can live with that.
Thanks for listening (😊 Reading). This really is a great website.
Good night ladies. I look forward to hearing from you again
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Yeah, glad to see you Modum. Not glad that you're here because of BC but glad to see you this thread. Many years ago I visited Toronto. My nearly 40 year old son was about 6. My dh was a visiting professor for one month at a university in London, Ontario. My son and I took a rain to Toronto for a few days. I picked a hotel that was in the "rent by the hour" part of town. You could hear through the walls. Needless to say, we checked out and found a very nice hotel not too far away. Really enjoyed the city. Went to a baseball game, a nice children's museum ... And I honestly don't remember what else. I love visiting Canada. Always met such friendly people. Glad your se's aren't too bad. Fatigue is my #1 se. I could fall asleep right now. Seems like I am always fighting it. My hair is very thin. I could not go without a hat or wig. I hope your scan gives you good news. Woodburns, the ixempra will be after halaven. I hope I stay on halaven a long time. I would love to have a long run. My onc often leaves details out when he gives me reports. i always request a copy of the report and usually have questions. Well, what about this, what about that. He usually says that is nothing to worry about. I think he wants me to leave with hope in my heart! I'm sorry your bone lesions are back. As far as I know, I only have one in my left pelvic bone. I get zometa every 3 months. I think our husbands have a hard time because they are not in control. I try not to express my fears to my husband because he will want to fix them and he can't. Well, it is good to have company and I hope halaven is good to all of us! Happy weekend
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My first Halaven seems so far not to be too bad. The only SEs I have had so far is night sweats last night (had to change my night gown twice) and today food has no taste. My DH had me trying different tastes like sour, sweet etc. Sweet was still there but nothing else. Had left over beans and rice with hot sausage in It. No taste and it always tastes better the second day. Oh well, this too will be doable.
Another co-worker and friend just found out this week that he has bone cancer. They did surgery today to put a rod in his hip to stabilize him. Also did a biopsy and will know results on Wednesday. Seems like every time I turn around someone has gotten some form of cancer. What the heck is going on? Have we gotten so far away from the farm that our food and drinking water is causing this? I know I don't have the gene and I am so far the only one with cancer in the family. Wish they would find out why the increase in cancer.
I am going to go to bed on that note. Good night ladies. Sorry you are here for the reason you are, but it sure helps to talk to someone that has been there and understands.
Thank you
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good evening, all! Just reading your post, Woodburns, was an eye opener. Sometimes I have se's without realizing they are se's. I have woken up several times with no night gown on. I would find them soaking wet at the foot of the bed or on the floor. Never thought about it being a se. What a dummy I can be! And food ... Nothing tastes good to me anymore, I don't even think about eating because there's no enjoyment. My dh forces me to eat and I know I need to but I really don't want to. Duh. Another se. And when people ask me about se's I usually just mention fatigue. I was just telling my husband about your post and he is bringing me ice cream with caramel sauce! He laughed when I told him about the night sweats! It does seem like there is more cancer, not less, in th world. We need to end it!
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