Halaven

Hello Ladies,

I ended up not getting to start the BEZ235 clinical trial. It was a safety issue for me since one of my clotting factors has been elevated for a few weeks. So moving on, I am going to start Halaven Thursday. Have any of you guys started this medicine since it has been approved or known anyone who has used it? It is an infusion given days 1 & 8 and off week 3 of a 21 day cycle. It says it is ran over 2-5 min, but I asked my nurse and she said about 20 min. S/E appear to be typical. I am also stopping Zometa and starting Xgeva. It is a shot given monthly. I started back on my Arimedex a couple of nights ago. I am Her2 +, but I don't think at this point I will be getting back on Herceptain or Tykerb for now. Not sure why, but I will be asking. I want one of them. They are also checking on the TDM-1 trial in San Antonio for me. I have been working so hard for this original trial and have been off chemo for about 2 months and boy can I tell everything has really gone down hill body wise. Weight loss, pain, fatigue. I have even had to see a pain mgmt doctor during all of this. It has been one huge roller coaster.

Any info you know is much appreciated
Shonda

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Shonda, see UCan'tLoseMe - she just started halaven with good results!

http://www.inspire.com/groups/advanced-breast-cancer/discussion/eribilum-ha laven-update/

I'm so sorry you didn't get into the trial you wanted. Keep searching - I'm sure they'll be another one for you!
My bone pain has intensified as well. Now I find myself nauseaus from all the motrin and tylenol.
I'm praying you get on treatment soon and you rebuild your strength.

Sending you strength and hope. Julie

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Really try to get into the TDM-1 tria if you can, the results for Her2+ seem to be quite good. I had 10 great months on TDM-1 before my disease progressed. I just started Halaven have had 2 treatments with Halaven and Herceptin combined. Thus far, we are having wonderful results. My recurrence presents as a skin rash, thus we can tell that the Halaven is working because the skin rash has greatly improved. I'm tired and have some neuropathy, but not too bad. It is well worth it, given the present results. Crossing my fingers for continued success, and the same for you.

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Hi.

I read your reply in the middle of the night so I was thinking a lot about your pain. I am concerned for you in the fact that you are taking Tylenol & Motrin. Can you tell me how much in a 24 hr period you are taking of each? We can talk private if you want instead. I have sent you a friend request. I have some info that I have just learned for myself with the pain and managing it that I can pass on to you and maybe you can check it out for yourself and change your direction with controlling your pain. It is such a miserable place when you hurt and relief is hard to find or dangerous to use.

Hugs
Shonda

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I am currently on my second round of Halaven, minor side effects....fatigue mainly, alittle nausated on day 1,2 nausea meds keeping mostly at bay. My hair is starting to fall out by not bad yet, bummer. I soon get scanned on my off week this time and I will be sure to post my results.
I have a question about why you stopped Zometa and started Xgeva (never heard of it). I am fixing to look into other treatment options other than Zometa because its like about 2 1/2 weeks my hips are killing me and I am already on highest dose of Mobic daily and for the last 1 1/2 I am having to double my pain meds and sometimes that doesnt even take the pain away.
Hope Halaven is our dream drug. Wish you the best.

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Hi Connie,

Thank you for the reply. What premeds are they giving you and then what are you taking for nausea? How long do they run Halaven for you?

I have been on Zometa for 5 years. I was originally on it monthly. Then went to every 3 months due to some kidney issues from TTP secondary to Gemzar, and now I get it every 2 months. When I was not qualified to take place in this study last week I decided when I emailed my nurse that I wanted to look into Xgeva (denosumab). I had asked about it before it was approved, but no luck switching then. Here is the deal... I stated my case as I am going to have to do something different. I have severe disease in my bones from my cervical spine to my femurs. I had a metal rod placed in my left femur Dec 31 2010 to prevent a fracture and I poss. need one in my right, but it has been somewhat of a nightmare to want to go through it again. I have had a fractured collar bone that I had to have radiated. All is well with it now. I have had the L5 vertebrae collapse and I had to have a kyphoplasty procedure done in Nov 2010 to rebuild it and make stable again. Zometa is not where it is for me any more and a switch is very much needed. Since I have had the rod placed----- the areas in my body are so painful. Things are better right now for the past few days (not sure why), but I could barely walk. I was using a walker or cane. The pain was so unbearable. My onc. had me on Morphine and Oxycodone. Was not working at ALL!!! I saw a pain mgmt doctor and we changed to Oxycontin 40mg 1- 3 times a day and Oxycodone 10/325 and I am only allowed 6 in a 24 hr period. I was taking
12 before. The concern is the Tylenol that is in it. He also gave me a muscle relaxer called Zanaflex. I take 2 at bedtime on an empty stomach and that is also used as a sleep aide. (it doesn't last long for sleep though maybe 3 hrs), but it works well for the muscles. He told me that it is one that works on the tail bone area muscles. He also wanted to do a caudle procedure. That is where they put you out and then give you steroid shots. I am going to have that done on the 28th. I wasn't going to be able to do it if I had started the study, but now I am free and clear and ready to have shots in my tail bone. I believe you have to do it every 3 weeks in the beginning and then it goes out to every few months or something like that. I am also praying for Halaven to pull the cancer back which always has backed the pain off for me in the past.

What is Mobic? Have you seen a pain mgmt doctor? What pain meds are you on? I know this doubling on pain meds is just not a good thing and from some other reading I have been doing states it doesn't help any, but sometimes I have felt so desperate. My son (14) will play around with me and make comments about me being a druggie and I have had to explain that I have never gone against the directions on the bottle. It has just been a lot of medicine since December that I have been on. This is all new to me. Prior pain has always been very well controlled or I just didn't have any. It really hurt my feelings when he has made comments in the past. He has stopped now. I look forward to hearing from you.
Shonda

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I just started halaven. had my first dose last week and will get my second dose today. It only took about 10 minutes. It just takes time to get it set up. The nurses are very busy in chemo room I go to. I did have nausa on days 2-3 but other then that I have been ok so far. I of course am hoping it shrinks all the tumors in my liver.

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Hello Bonrose,

What are you taking for nausa? How many liver tumors do you have? I am really excited about this actually.. Isn't it funny that we get excited about this and we should be getting excited about that new dress or a new car. At least that is how I feel.. So far I think all 3-4 responses I have about being on Halaven have talked of nausa. That is good to know so I can ward off that evil and stay on top of it with meds. That I do not like!! Emend always worked well for me, but I believe as of Jan '11 it is only available through IV and not 3 day pill form. It is also about 300 and my ins didn't cover it so I had to apply for co pay assistance for it and was very fortunate to get it. I also use zofran and compazine.

Do you have mets anywhere else? I have them to bones severe and since origina DX, and I have some sub-centimeter ones in my lungs we think.

Today is a great day. I can already tell!

Shonda

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Shonda, please pm me your suggestions for pain medicine! I'd love to hear from you. Julie

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Hi Shonda,
For the nausa I'm taking Zofran and compazine. I was first diagnosed stage 1 in 1995. In 2005 it spread to the chest wall. We seem to be able to keep that under control but the liver keeps spreading. I have to many to count in the liver. They are small but just keep spreading. They first appeared in the liver in 2009, I tried Zoloda for 3 months and it didn't work. Then we did Avastin/Abraxane which did well. After 3 months I had to go off of Avastin as I had bad side effects. So I just had the Abraxane which worked for another 9 months then it stopped working. So we tried Doxil for 3 months. That is taken once a month. I broke out in a very bad sunburn poisioning type of rash. My onc. says she saw it (the rash) in two other patients who also were redheads. Only mine was the worse. Lucky me! Anyone now it's Halaven, just had my second dose today. I can't say I'm excited. Hopeful, I'm always hopeful. It just gets so depressing when each treatment stops working. I am about 6 years since diagnosed with mets. The first diagnoses in 1995 as the years went on I almost would forget that I had BC. Since the mets as the years go on I get more worried. I just feel like time is running out for me. I hate the way I'm feeling but I just get more scared as time goes on not less. Normally I'm a very positive person, I see the glass half full but lately I have been depressed.When all this started, I told my daughter I would be here for her graduaduation which is in June. I am so grateful for being allowed to see her grow up. But I want more time with her you know. No, I'm not dying yet or even close (I pray) but I am just more scared now then I ever was before. So I am hopeful that Halvena will work long enough for the next new treatment, etc. etc. etc.

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Hi Shonda. I have been on Halaven for a few months now and Zometa every 3 wks.. My blood counts have dropped dramatically and I have had more energy recently than I have for so long. It has been wonderful. I have not had to have the neulasta because my counts have been staying right where they belong. I have been very lucky with the nausea, but that could be because I take Lorazepam everyday.

My last treatment was Tuesday for Halaven. I have had backache before (side effect) and this time I also have pain in my hip along with the terrible back pain. This time the pain is causing me pain to even try to get out of bed. Each day it's getting better and I know it's just a side effect and that in a couple of days it will subside. I have told my doctor about this and hopefully, he will be able to give me some advice of getting ahead of the pain. I do not like painkillers, so I choose to not take them and use my heating pad, ice pack and usually 500 mg's of Naproxen help me out until my pain becomes too much for this. You have been through so much and I am wishing you much success on Halaven! I know it's done good things for me and I continue to pray that I see great results for a very, very, very long time! Take care and let me know how you are doing!

I am very hopeful about this drug and continue to try and be positive. You have had

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Hi shonda, I am going on my third dose of eribulin which I think is the same thing and I can literally see the diffetence in all my chest wall tumors. My tumors were protruding through my skin with discoloration as wellas feeling allofthem. My skin looks fabulous and my breathing has drastically improved. From what I have read this med prolongs life by 2.47 months better than any other treatment which is promising. I have lost my hair and do experience back pain but I think its cause I have spinal mets. This is under control with 2.5mg of methadone taken 2x a day or every 12hrs. I take zofran for nausea as well. I too was taken off tykerb and herceptin due to decreased heart function. I think to be a candidate for this drug you had to have been on for diffetent types of chemos. I guess that's why it's working so great for me and I hope it stays that way even if it's for a lil while ;) I wish you the best of luck

Leanna

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I have to put in a word for T DM-1. My wife is strongly HER2, and the results , after 5 doses, are amazing. Also, I saw some mention of tylenol. Be careful, those who take it, if you have liver mets. My wife does, and tylenol made her liver counts double ! Almost didnt get into expanded access for T DM-1. For expanded access to T DM-1, call Genetech at 888-662-6728.

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Thank you for the information. I will be calling them. As far as her liver counts doubling, can you tell me what hers are and which ones?

Was it her Total Biilrubin? Mine is .3 Range is .0 to 1.0
Alkaline Phosphatase? Mine is 397 Range is 50.0 to 136.0 High This has been high for a while. I have a lot of new bone stuff.
AST Mine is 38 Range is 15 to 37 High
ALT Mine is 25 Range is 30 to 65 low


Thank you
Shonda

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