Halaven - Day 1
Comments
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Tooyoung.... it's only been approved since Dec. 2010. I've only had 3 cycles (about 10 weeks now, 2 on and one off) Some of the earlier posts here may show who's been on the longest. Most of us talking now have just started it in the recent 3-4 months. Anybody been on it for greater than 6 months and still on it? Anybody who was on the clinical trials?
Donese: Wilbur's book is very transcendental... and she was very into alternative therapies, which obviously didn't work, but I read it for the message on dealing with cancer/caregiving/metaphysical aspects. Obviously they had greater resources than we have also (ie, traveling to Europe for extended treatments, etc)...LOL I'd like to try that !
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Hey...I've been on since the end of April, beginning of May 11' so thats almost 9 months with no stop in sight thank goodness. I have scans in March so hopefully I'm still stable. I think I do well until its time for the scans again. I have lung mets and still able to do without O2 unless I exert myself. I continue to p--y for the best for me and and everyone else.
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Good evening-
I wanted to share some really great news...Robin's mets have reduced approximately 50% in her lungs. Her onc is greatly pleased, not to mention us. I think the sponge is working...finally something. I think we will ride this wave for a while...0 -
Dear Paula, well I finally found someone that is on the same treatment as myself. I will be starting my 5th treatment tomorrow. The medicine is easy to take, even though I was told 1out of 7 lose their hair, I was the one who did, but it is growing even though I am still having treatment. The worse SE is the hand and feet numbness. It has gotten severe, everything dropping out of my hands, lots of pain in my legs, problems with my balance to the point put a shower bar up so I don't fall, and I am very careful in how I walk, sometimes feels like my knees are buckling. I see my Dr. Tomorrow before treatment to discuss the seriousness of this SE and maybe take an extra week off or lower the dose by half. If this gets any worse I will be in a wheelchair and I don't find this acceptable. With this all being said had scans and mri in December after 4cycles and I am still bone only with no progression and I would really like to make it to the 8th cycle and rest for a while. They are looking to use this drug as a 1st line of defense in the future after 1st DX, and surgery for the chemo treatment. Trial results where very good except for the hands and feet problems. I have started taking Vitamn B6, B12 and prescribed Lyrica, we will see if it helps. Please let me know how you are doing as you continue on this drug. You are right down I-35 from me, I am in Waxahachie, Texans in this fight together. Sincerely, Chris!
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Dear Paula, well I finally found someone that is on the same treatment as myself. I will be starting my 5th treatment tomorrow. The medicine is easy to take, even though I was told 1out of 7 lose their hair, I was the one who did, but it is growing even though I am still having treatment. The worse SE is the hand and feet numbness. It has gotten severe, everything dropping out of my hands, lots of pain in my legs, problems with my balance to the point put a shower bar up so I don't fall, and I am very careful in how I walk, sometimes feels like my knees are buckling. I see my Dr. Tomorrow before treatment to discuss the seriousness of this SE and maybe take an extra week off or lower the dose by half. If this gets any worse I will be in a wheelchair and I don't find this acceptable. With this all being said had scans and mri in December after 4cycles and I am still bone only with no progression and I would really like to make it to the 8th cycle and rest for a while. They are looking to use this drug as a 1st line of defense in the future after 1st DX, and surgery for the chemo treatment. Trial results where very good except for the hands and feet problems. I have started taking Vitamn B6, B12 and prescribed Lyrica, we will see if it helps. Please let me know how you are doing as you continue on this drug. You are right down I-35 from me, I am in Waxahachie, Texans in this fight together. Sincerely, Chris!
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Christine, I know, the neuropathy is horrible. Please let me know if the vitamins and lyrica work. Also Donese, glad to hear the lung mets have reduced. Thats where my mets is.
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Donese.. Great news !!!
Christine: I have a little neuropathy, bottom of feet and hands, but it seems to be worse day 1-4 of treatment; seems to go away a little the rest of the time. I am very clumsy/dropsy too. I'm sorry you are having a more severe problem. Neuropathy is bad for some, even on the Taxanes. I had to do reduced doses when on Taxotere with my orig. treatment because of it.
My hair doesn't seem to know to grow or fall out. It comes out a lot for the first couple days after chemo, but yesterday I discovered a whole new patch of baby hair growing back in.... go figure.
Elizabeth: Glad to know you're doing well on this long term. I pray I can stay on this for a long time too!
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Bunker,I'm so glad Havalen has made my lungs better symptomatically. After Dec 29th I haven't needed anymore draining of my chest. Is your Robin ok without the chest tube? I do hope so. I think I might perfer an oxygen mask. My biggest fear is sufficating. Eeeeck. I used to be on Abraxane and it just absolutely stopped working. (In my first post I said I had been on Arixtra...that stuff is for thinning my blood so I don't make clots for a cozy place for tumors to grow). Anyway, I pray Halaven works many months for all of us!!!
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Bunker,I'm so glad Havalen has made my lungs better symptomatically. After Dec 29th I haven't needed anymore draining of my chest. Is your Robin ok without the chest tube? I do hope so. I think I might perfer an oxygen mask. My biggest fear is sufficating. Eeeeck. I used to be on Abraxane and it just absolutely stopped working. (In my first post I said I had been on Arixtra...that stuff is for thinning my blood so I don't make clots for a cozy place for tumors to grow). Anyway, I pray Halaven works many months for all of us!!!
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Penny, I hope you have found your times of feeling energetic between the fatigue. I think I have figured out a cycle with energy on Halaven. I have the infusion along with 5 mg of a steroid and an antiemetic on Thursday. I can't sleep Thursday night. Friday I am really productive. Day 3 and 4 I am so tired and need to sleep long hours or I bark at the world. Nobody who loves me and hangs around me deserves me being irritable. The ONLY DAY I feel good is the day before the next cycle starts.I need the Neupogen shot after the first dose. In a few weekends I plan to go spend the weekend at my son's college to watch him sing with the glee club. I will be meeting his girlfriend's mom. I have to work with my Onc. to be sure I can have a feeling-ok-weekend for that date. I haven't felt any neuropathy with this regime. Is it inevitable? Come to think of it, I am walking a little less fluidly.
My white count is low and I need a nap. Happy Super Bowl Sunday.
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Hidin'...Havalen has help so far. Robin will be getting the chest tube taken out on Friday (2/10/12). I am hoping that things will be okay with the tube out. The last three drainings have yielded no fluid and her onc had her take another exray to make sure the line didn't kink up some place. The exray showed no kink and showned a reduction in the size of the lung mets. It was an exciting day, to say the least! We have learned to celebrate every little battle we have won. We take one battle at a time to win this war on really both of our lives.
This disease has taken so much from us all...whether you are the one surviving or the one caregiving to help the one you love survive...0 -
Hi, I have finished my third cycle=6 infusions. I do have day 3/4 less energy but feel absolutely human the 1-2 days before day 8. I am so much better on no steroid.The first time cycle 3 day 1 I came home and napped no steroid rage. I do miss the energy but not the crash, pigging out and insomnia. Am I the only one steroid/antiemetic free. The feet and fingertips are a little numb but minimal pain. I just ignore hobbies that require fine dexterity. I will continue on in my sponge haze as I do not want to think of what tumor markers may show, b ut from how I am feeling I think I will be okay.My onc. dislikes how patients become obsessed and held hostage by the numbers and the ppower they wield over us. She prefers it's about the numbers, symptoms, physical exam and scans all together. I feel like the old show wagon train may we all continue aboard with the mighty sea sponge.
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Penny: Good for you! I don't think I could do it without the steroids, but I don't like them either. My onc doesn't do tumor markers either. He says they are not as reliable a predictor as many think, except for certain cancers. He agrees with yours about the 'obsessing' over them. My neuropathy in my hands is worsening slightly, but like you, I'm just not threading needles....LOL Typing is becoming hard, as my left hand, pinkie and next finger are totally numb. I make a lot of typos that I have to correct.
I have some bad news. It looks like I've failed on Halaven too. My lymph nodes are back, and new ones on my back and neck. Skin mets growing again. All during my 'chemo free' week. I'm talking to the onc today to see what is next (am supposed to have Halaven again on Weds, start cycle 4), but may end up going to MD Anderson for discussion of second opinion/clinical trials in the near future... I'm running out of standard therapy options. This is one of the big "downs" of our ups and downs, and I'll take it in stride. I know there is other stuff out there; just have to find it, find the right one to work for awhile. I'm trusting in God and his great plan, His will, not mine.
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Karen I am so sorry to hear yor news and YES there is something out there that will work. They just haven't found it yet.
Damn cancer...why does it have to get smarter?
In this case ther is nothing wrong with being dumb!!!
By the way, I'm taking a poll...who all is on steroids and why?
Donese0 -
Karen..I'm sorry about the treatment, but glad to hear your faith is strong. I'm with you, His will not mine. Its been over 6 months for me and I just pray that its ongoing. I also pray that they'll find the treatment that'll work for you.
Oh and I have steroids in my chemo premeds.
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eag- why are they doing steroids? Is it to fight infection? To increase appetite? To help you breath?
I ask because Robin has been given a steroid pack for the last 3-4 weeks, but I think it is because her mets are in the lungs and she has had a horrible time with clearing up the fluid. She's now ok, but she just finished her third round with steroids. The Halaven has decreased the mets in her lungs and the fluid is gone and she will be getting the chest tube out on Friday.
All this rambling to just see what different people at doing with steroids. I'm long winded today.
Donese0 -
Donese. I know this sounds stupid, but I have to ask when I go for treatment on thursday what the steroid is for. All I know is I get them plus benadryl and an anti-nausea drug as a part of my pre-meds. My mets are in my lungs to, but thats the only time I get steroids. I havent ever had to have them drained, or had any fluid, which I guess is a good thing. Does she use oxygen?
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The premedication steroids is Dexamethasone (Decadron) usually. It is a small dose to prevent any allergic reaction, as far as I know. So is the benedryl. The Zofran or other are the anti-emetics (anti-nausea) drugs. Yes, Robin is getting a different way of steroids because of her fluid. They are using them to knock down the inflammatory response her system is causing (all the fluid build up). Probably because she's already on the steroids, they don't give her one during chemo.
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Yo, starting halaven. Hate to make you repeat, but how likely is complete hair loss? Can y'all say?
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Hi, Karen you amaze me. You have such a great outlook. Maybe affinitor and an AI if your onc will push the envelope with the ins. industry. Mine explained the closer to FDA approval the more likely they will cover it. Wish I could come to Texas for a huge steak and to give you a huge hug! Please let us know what your next treatment is. Please feel free to check out thelydiaproject.org or com and sweetsleepministry.org or com. They should both be able to be googled. I am spirtiual not formally religious but as my mother would say if she were alive we need to remember Norman Vincent Peale and the positive power of prayer ( even if today some might call it meditation).Treatment change is always a roller coaster,here's hoping you get your pinkie back. Smiles and a rainbow headed your way. Penny
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Kathy, I thinned terribly but am glad I did not shave my hair off. I took it down real short but it's weird trtying to do a female comb over. so with hat hair I look like a kewpie doll, just stands up.I got the tingle to the scalp after my first cycle so i knew it was just a matter of time before the hair went, shedding around the house worse than the long haired cat. Hoping you are oe of the lucky ones and get to keep yours. Penny
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My Mom had to stop Halaven due to Zombie like SE's. I kept looking online for this type of SE from Halaven but could come up with nothing. She also suffered paranoia with it. It could be partially dementia mixing with the drug. Her Onc lowered the second dose by half, and the same thing happened so it's been discontinued and on to something else. I wish you all very good results with it.
Peggy
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Peggy... that is strange! Did they rule out the anti nausea or steroids? they make ME feel like a zombie sometimes! I hope they can find something else for her without that S/E!
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They withheld the Decadron when they gave her the second dose, and they reduced the dose by half. She did have the anti-nausea meds, but she's had those before and never had a problem. The Onc says it's definitely from the Halaven. I know I've never heard of this kind of a reaction from that treatment, but she is elderly so that could have something to do with it.
Peggy
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Thx for hair info penny, Tex, MB and all. Start Feb 29. Oy.
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Hey Kathy, just chiming in..all my hair fell out, but its growing back now. I actually have eyebrows now!
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Well,Elizabeth, I am going thru the stages of acceptance. This tine I will buy a really good wig for those days when you don't want to be the pathetic sick lady. I love bandanas but don't look as hot as >>> our survivor- model. (She really is a BC patient)
I would love to ave semi- slight tatoo of where my eyebrows are naturally just so I don't create a new mask every time I apply pencil.
power to the bald!Kathy
Diagnosis: 8/30/2010, IDC, Stage IV, EhR+/PR-, HER2-0 -
Ok girls.. The Halaven quit after 3 cycles. BUMMER. I was hoping for more, but that seems to be the usual with me. My longest response was the Avastin/Abraxane which lasted almost 6 months. THE GOOD NEWS is that my bone scan looks good, very tiny progression in one hip; rest is stable. So, that made me feel better. My 'marker' for chemo's working are the lymphatic skin mets on my chest, and this week (my chemo free week after the 3rd cycle) I popped up with them on my BACK now and under my left arm in addition to the ones on my chest coming back. BUT, this is all superficial and not in any organs, etc, Praise God! I have nodes in my left eye too; will see about doing orbital radiation (I didn't think they could radiate the eye, but they block the eyeball itself and just radiate the masses inside the boney orbital area.) Doc is trying to find Doxil, but it's one of the ones that is EXTREMELY hard to get now.
I won't leave you.... I'll probably get on a Doxil board to see what's up (If I can get it!) but I'll check in with all of you. You are all special ladies, as is everyone on these BC.org boards !!
If I can't get Doxil, will do Carboplatin and some other name I never heard of... LOL Doc really wants the Doxil. I was 3 years out after treatment with Adriamycin/Cytoxan... he feels that Doxil, which is a form of Adriamycin, but different, will maybe hit it.
Praying for all of us..... ESPECIALLY THOSE WHO CAN'T GET THE DRUGS THEY NEED~!!
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Hello chicas! I apologize for not writing sooner. Busy doesn't quite cover what I have been lately.
Karen you were right about why Robin was getting oral steroids...to knock down the inflammatory response to her lung mets. I went to the onc with her yesterday and he said the same thing as you did. You are now known as Dr. Karen! All kidding aside, thank you for telling us about all the uses for steroids.
Also Karen, Robin also has skin mets. Well, they are all gone but one. The radiation doc said that he is going to nuke it a couple of times and that should get it. He is an amazing radiation doc...the skin mets were quite extensive and her skin now looks incredible...incredibly good and smooth. I'm praying for the new drugs work for you.
K-Lo (Kathy) I hope Havalen works for you
Elizabeth, it's good to hear you are well, too.
Thank you ladies for all your help, support, knowledge, love, and laughs. Without this blog, I would be still aimlessly roaming around looking for support.0 -
Dear Karen, Thank you for your update. You will be in my thoughts and prayers. Penny
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