What to do now??!!TriciaK
 

I just got a call early this morning from my oncologist's office that they received approval for havalen for me! I am so shocked, since I have did not expect it to be approved! After discussing options with so many of you here, I had decided that I needed to try abraxane. Your posts and my research afterwards convinced me that it would have less side effects than anything else right now, and after trying 3 combinations in a row with horrendous side effects, I am really gunshy!I asked the nurse that called to set up an appointment with the oncologist this week or at least have him call. I am confused now though about which to try---the abraxane or the havalen. Can anyone give me feedback on side effects of havalen compared to abraxane? Of course with my current SE record there is no way to know for sure how my poor old body may react, but I am determined to try something else and am not ready to give up. I will also do research on havalen as well as getting his take, and see if I can find anything that will help me decide abraxane . The hives still cover my body except face, hands and legs, though I do believe there is some improvement. I realized there are two kinds of hives: the one from gemzar is a measles like, bright red rash, while the tykerb/xeloda combo caused blister like hives. It's been over two months since it started and it still looks and itches pretty bad, but I am anxious to get started on another regime ASAP since the tumors are growing. I appreciate any of your comments, suggestions, thoughts, prayers and speculations! I love you all so very much and send my warmest thoughts and prayers. Hugs, TriciaK

Re: What to do now??!!TriciaK
 

Tricia
As you know I have been on Halaven since December 2010. I was the first in the midwest to get it. I ended up with feeling tired, slight nausea, or lack of hunger. I had them give me Zofran and Compazine IV at first, and that took care of it. I now take care of it by taking oral Zofran and hour before, and up until this latest event this past week, drove myself for treatments (75 miles each way.) I usually feel a little sluggish for a day or 2, nothing unbearable, I did the whole week at San Antonio after my first treatment, I just know when I'm tired I rest. I have never had Abraxane, but my friend seemed to have worse side effects with that. If you go on Halaven (Eribulen), just be cautious with your white counts. I am now on Neupogen 5 days week one, & Neulasta day 1, then day 7 then a week off cycle. It melted away all internal nodes, and took care of skin mets on my neck that grew even while on TDM-1. Even after my life threatening experience last week, I was able to get the Halaven today....I think you will do fine Tricia....it has proven to work miracles on many patients already. By the way, I did lose my hair, but it is growing back while on it, and its only been 4 months. Hoping it is your miracle Tricia....by the way, I am also on Herceptin with it.
Love to you
Sheila

Re: What to do now??!!TriciaK
 

http://halaven.com/
http://www.fda.gov/NewsEvents/Newsro.../ucm233863.htm
http://www.abraxane.com/
http://www.abraxane.com/drug-side-effects.aspx

I am enclosing at least two links for each drug so you can read about them and decide which one you want to try first. There is no reason why you can't try one and if that one doesn't help you can try the other one.
Halaven is a new drug for metastatic breast cancer. Sheila has had experience with it, so hopefully she will respond to your request for information. I think she had some success with Halaven. If you find one of her posts she has some information in her bio about Halaven too.
Abraxane is believed to have less side effects than Taxol, because the binder/delivery system used is less of a problem than the one used in Taxol.
Have you seen my post in your thread about rashes and skin issues? I had a bad rash on my face. All my doctors thought it was cancer treatment related. However, I later found out it was from the binder or filler in the generic version of the blood pressure medicine I was taking at that time. If you are taking other medications perhaps the skin issues are from one of those.
We are behind you with our fingers crossed whichever treatment you decide to try first. All the best to you !! Let us know how you are doing.

Re: What to do now??!!TriciaK
 

Hi Tricia, I think you have received excellent support and ideas from our sisters.
I'd just want to send you a BIG hug and much love. You are my HERO.

Adriana.

Re: What to do now??!!TriciaK
 

Tricia,

I had the same problem while on tykerb, my doctor prescribed me steroids, the same day I had the meds., the itching and discomfort went away. I can't remember the name, and I just cleaned up the medicine cabinet last week. Wish I could be of more help. Please take care.

Much love to you,

Adriana

Re: What to do now??!!TriciaK
 

It sounds like you've got two potentially good options. I lost my hair with Abraxane but I don't know if that is an issue with Halaven. I don't know if that bothers you but I would have liked not to have lost mine for a fourth time! I did like the tumour markers diving though. All the best with your decision and conquering the rash.
Trish

Re: What to do now??!!TriciaK
 

Tricia,
I hope our well meaning input doesn't cause more stress!! But...for what it is worth...one more data point. I had good luck with my initial treatment of Taxotere + Herceptin. However, I did find it challenging with a drop in white blood counts and some neuropathy at cycle 5 and 6.

I went on Abraxane as my 2nd treatment and found it very tolerable. No neuropathy and for some reason I didn't lose my hair. While it didn't work as long as the taxotere, it did seem to work.

Do you recall your reaction to taxotere or taxol? It might be a guide as to how your body would react to Abraxane.

Tough choice for sure. But hey!!! You have choices!! That is a marvelous thing.

Hmmmm...listen to your heart and your body. If you are feeling tired, I would opt for the potentially easiest option to give the cancer a quick punch but give your body and spirit a moment to rest up.

Hugs....Lori

Re: What to do now??!!TriciaK
 

Thank you all so much for sharing your experiences and encouragement! I remember so well my first two rounds of BC in 1985 and 1990, when I felt so alone and bewildered. The only person I had known with BC was my only sister, who died of it the year I was diagnosed. She was gone before I knew all the questions I needed answers to. Now I feel as if we have many wonderful sisters who are always there for each other. I will see my oncologist next Tuesday and hope I can start a new chemo + herceptin program then. I could have seen him this week, but the hives and rash are still too obvious, and he said he wanted me to be over that problem as much as possible before starting anything new. I was leaning toward the abraxane, but since I got the call about the halaven being available to me, I am thinking I should take advantage of it. It may not be offered again. As Lori said, the marvelous thing is that I still have choices! I value Sheila's experience with halaven especially and am so appreciative that she is well enough to share her thoughts. If I do as well on the halaven as Sheila I will be be so grateful . I have never lost my hair completely, but it looks so thin and straggly right now I think going bald may not be so much worse. I have several wigs and wear them now anyway. I can handle nausea and appetite loss and being tired all the time, having had a lot of experience with that in these 25+ years of fighting BC. I think the hives and rash combo has been the worst side effect, though the weird headaches, earaches and pounding heart SE's after trying navelbine this last time were pretty bad too. I am feeling more confidence and hope than I have since having to stop the tykerb/xeloda. I'll let you all know how the halaven works for me and will be watching to see how continuing treatment works for you, Sheila! I appreciate so much what you have posted so far---I wouldn't even have known about halaven except for you. Thank you all again for being there! You are all in my thoughts and prayers daily. Love and hugs, TriciaK

Re: What to do now??!!TriciaK
 

Glad to hear from you, Tricia. Let us know what you final decision is.

Amelia

Re: What to do now??!!TriciaK
 

Tricia - Just wanted to put in my limited experience. I have only had one halavan treatment so far. It was right before I was dx with brain mets & had to stop to do radiation, I see the onc. tomorrow and am hoping that I can start it again tomorrow too. Anyway the 1 treatment I had seemed to be so easy! I got anti nausea meds in iv and didn't need to take any other meds at home - no nausea and actually I didn't feel much in any se effect the next day or so at all. I'm sure like others it accumulates for at least the one treatment seemed easy! And of course the wbc and other things Sheila has experienced are true too.

I am glad to hear your update and hope the halaven works well for you - continues for Sheila - and will work well for me too. I love your posts; you are such a lovely woman and I always appreciate your words and kindness. Pam

Re: What to do now??!!TriciaK
 

Dear Tricia

You have alot to discuss with your oncologist. You have 2 directions to go and you are dealing with 2 problems so I think your discussion should focus on:

1. you have some allergy problem now
2. you have had white blood cell count issues.

I think you need to discuss what treatment plan will be easiest on these two issues so that you can at least be able to stick with something and see how/if it works for you. The white cell count can be dealt with if you can tolerate Neupogen or Neulasta. The allergy part can be tougher to deal with if that happens. And, whatever you and your medical team choose, if it is not going well, you can stop and then regroup and try the other one.

Your doctor can help you shift through these issues so your next try is easiest on what is bothering you now. Make sure the doctor explains what other kinds of side effects you might experience and make sure you have OTC drugs or prescription drugs to deal with that prior to your first infusion so you are 100% ready for anything.

You have 2 great options so don't second guess yourself or your team as long as you are 100% aware of the choices they are recommending for you. I may not have captured everything that is a concern - perhaps also ask what is easiest on the heart too.

Love and hugs

Re: What to do now??!!TriciaK
 

Dear sweet Tricia,

I love your spunk and determination! You are one of my heroes here and I always look forward to your posts. Good luck with whatever treatment option you choose. We are all cheering you on!

Love and hugs to you,