Halaven Side Effects and Pain

I started Halaven back in October. My breast cancer has met to all my bones and both my lungs. I was originally diagnosed back in 1991 at 30 years old. No chemo at the time. Remission for 12 years then it returned big time. Its been 8 years now with the cancer going into remission and then returning. I've had a lot of different treatments and am now on Halaven. The problem I'm having with the Halaven is not nausea, it's pain. My legs, pelvis, ribs and spine hurt so bad. It hurts so bad I can't tell if it's the bones or muscles. I'm on Tylenol 3 with codene but lately it hasn't been helping. I was told this was going to be an easy treatment and so far is has not been. Are any of you having bone pain, restless legs even cramps in your body in places you don't usually get them like your torso? I'm at a loss here because this medicine is so new they are still collecting data so I thought I would reach out to you ladies. Thanks so much. Take Care and God Bless. Janie

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Dear Janie,
sorry to hear about your pains from Halaven. I have had two treatments so far and the side effect I experience the most is headaches. A little nausea and not sleeping well but I think that is due to the cortizon given with the infusion.
Did your problems start right away in October when you began treatment w Halaven? I understand fluid is very important and I drink herbal teas every evening, a lot of it. Sorry for not being able to help more. Hope someone else has better tips for you.

Are you Her2 pos? If so I have read about Herceptin TDM 1 which seems to ease the side effects from chemo.

Best regards, Lena

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Sorry, forgot to say, that yes I do have some pain in my torso but it has only been for a day or so and manageble
with pain killers.

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I have been on Halaven for 3 months and have experienced SE but nothing like you were talking about.... re: pain. I usually experience some nausea, headaches, very low white count, and difficulty breathing which we figured out is related to the muscles in my chest? Good luck and I hope the pain subsides.

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oh... and exhaustion!

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I started navelbine, which is a cousin of Halavan, in that they both kind of work in similar ways to defeat cancer cells from reproducing. I have muscle pain in the legs, and where the cancer is in the chest hurts (that I'm thinking is good, the cancer is crying....anyway the pain in the torso and the legs is bad, bad, bad. I'll get a chance to ask her about it next visit. So far I've avoided the big guns pain killers, but if this stuff is cumulative then I may have to use them. I was thinking maybe I've now got some kind of muscle disease or something, but the fact that it came on suddenly after the navelbine made me realize it's either the other stuff is out of my system (The PARP really took away pain, but eventually not the cancer), it must be this medicine.

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I've had three Halaven treatments and they have been, so far, quite tolerable, especially in comparison to many of the other treatments. My SE are extreme fatique after Day 1, and it hits my blood counts very hard. I take neupogen and neulasta (try explaining and getting that combo past the insurance company!) to keep my WBC somewhat normal, but my Hgb. and platelets have also taken a hit but not enough to delay me. When I started, I referred to it as my "last ditch chemo" and never really expected it to work, but I think it is working. I can't believe it!
Marlene

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I was on Halaven for about 5 months, with really nice results. Unfortunately, it too like many prior treatments (14), quit working. The main side effect I had was serious neuropathy and evolving knee joint pain. Since discontinuing the Halaven July 20, the neuropathy has greatly improved. Unfortunately, I have been left with very, very painful knee joints. It seems that patients on Halaven have such varied side effects. My counts held nicely, and overall, I felt very good, just couldn't feel my hands :) I do like the effectiveness of Halaven.

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I have completed my 2nd round of Halaven and am also experiencing body and bone aches-kind of like the flu-along with fatigue and nausea. My WBC is still ok and we know that Halaven is working so I’ll continue to deal with the SE. I have found Motrin to help with the body aches-tylenol with codine didn’t help and Emend has solved the nausea problem. I live in a state where medical marijuana is legal and I have one that actually helps with energy.
My son was 5 when I was originally diagnosed and he has just graduated from college. You’ve been fighting this for a long time and I’m glad you’ve found us. Together we make this all a bit easier.
Gentle hugs,
Susie

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I was on Halaven for around 3 cycles, and only recently stopped so I can start Radiation. When I was on it, I did have severe muscle/bone pains, and my Dr. attributed it most likely to the XGeva, and stopped the XGeva to see. But I ended up going off the Halaven, so do not really know which it was. I am interested to know that others have had this SE, and maybe it was the Halaven all along. I also experienced extreme fatigue around day 3-4, so much I could barely sit in a chair. Strangely, my bone mets were viewed as stable, but my primary breast tumor seemed to be growing. So that is why I am now going to do Radiation. I may go back to Halaven after, unless the Arimidex they currently put me on happens to work, I pray it does. I found that hot baths helped the most, other than pain meds. best wishes, Lisa

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I started Halaven In April, with 6 infusions ending in June.... Dr. put me on "chemo holiday" for a few months. I am now not on any chemicals.. (for now) While treating with Halaven I experienced fatigue, loss of appetite and just general tiredness. Now after being off for 3 months, I'm experiencing pain in the leg muscles and groin/pelvis area. Never sure if the pain is from bone mets for from the meds... I'm hoping it is just the residual chemicals still in the system. Otherwise I feel fine.. I also had hair loss which I hear is not that common.. It's coming back a bit now.. that is the least of it.
This is a wonderful blog and I do love reading comments from readers.... If I can ever be of help to any of you, pls don't hesitate to write me..... I had my original cancer in 1985 and after 23 yrs clean it return as bone mets... One is never truly free of this disease, but we can live a good life and support each other.. Our community is not a small one... we are many and we are strong... Stay well, my friends.

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Ladies, thank you so very much for all your responses. I thought I would give you a brief story of MY journey. I was originally diagnosed 2 months after my 30th birthday. Had a complete mystectomy but no chemo. I was hormone receptor positive and had already had a complete hysterectomy so they felt my hormone levels would be low enough. I did great for 12 years then it returned. It had met to all my bones and both my lungs. That was 8 years ago and I have been fighting it ever since. I have times of remission and then we start again. I don't consider my cancer as terminal, I consider it as chronic. I REFUSE to consider myself terminal. I have been on many different chemos. My kido's were little kids when this started and then it hit them again while two were in high school and one in college. I feel bad because they have all managed to find jobs in a 20 mile radius from my house. I know my little one wanted to be in South Carolina but they won't go far. The love of my life is my grandson, Mason, who is 2 years old. My daughter is expecting her 2nd child in February so as you can see, I have way to much to live for :)

I wanted to know if any of you have had a problem with Medicare or Insurance paying for your Halaven treatments? I got a call from my doctor's office this morning saying they needed to post-pone my treatment Friday because Medicare is no longer going to cover the drug. Once Medicare stops paying for drugs, regular insurance follows. I was so worried about this because Europe has already stopped covering the drug because of the cost. This makes me so upset. We have enough to worry about without having to worry about cost. If this drug works so well, why would they keep it from us.

As for the SE, my knees have been killing me and so have my legs. My tummy is not upset at all! I didn' lose my hair with any of the other chemo's that I've been on but I am on this one. It's funny because when I started this drug they said it should be an easy one and now all the patients at the center are having some pretty painful SE. I also have found that Advil helps because of the inflamation. Tylenol 3 helps somewhat but not much so I may just stop taking it. My pain management doctor put me on Morphine Patches last time and it was horrible to get off of so I don't want to do that again.

I know I talk like I'm in so much pain I can't move but that's not the case. I actually just returned from a short trip to San Antonio where I had a blast with my niece and nephews so I continue to put a smile on my face and push on. After all what's the point in surviving cancer is you can't LIVE LIFE!!

Take care sweet ladies and again thanks for all your support!!

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hi dearest ladies,
since marianne died i got so sad that i kept away from the site, but you all are so wonderful and i miss you too much.
have been on halaven since feb. it has stopped progression in lungs and also so zapped tumors there as well, plus one in uteral area and one in chest.
only treatment that has worked for me.
going for scan soon and am scared as usual.
my SE,s are extreme fatigue {have to sleep a lot }, loss of hair,knee pain and muscle weakness constipation.{for this i take miralax and prunes}.
no loss of appetite. when i don't feel like eating, my husband tempts me with things i love or we get take out. that gets me hungry.
i was lucky to find a wonderful woman to clean my place so my husband is not overwhelmed. i know she will quit if and when we go back to ca.
i had peripheral neuropathy but oncologist took me off halaven for 6 weeks for intensive tests. halaven continued to work when i was off it! now neuropathy gone......STAY AWAY!
i had a terrible virus. maybe because of low wbc count.has lasted for 10 days. receding now.
i have had some very lazy days, but i enjoyed myself by reading and watching tv programs that i love. and napping.try not to be hard on myself. i was always a doer. am an artist but have not picked up my brush since my son died and i got this beast. {coincided}
have started to see my dear friends and plan to see more of them as well as more of my daughter and sister etc. i love people and don't want to be a recluse.
have had some small bouts with depression but have fought it off.

the weather here in ny has been so awful, but cooler now so i hope to get on with my life.
what's the sense of treatment if i am going to be a blob?
i also see more wrinkles. skin all over very dry. mother sister and daughter all with beautiful skin. i had it too .think it is from halaven,not age.{ although hair loss and wrinks really not earth shaking but uplifting to look nice}
love you all and continue to hope that halaven fights the alligator.

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So have none of you had any issues with your insurance companies not paying for your Halaven??? I'm in Texas and they are putting a stop to it here until the manufacturer agrees to take a lower cost. I'm at a loss.

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