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Old 04-12-2011, 07:48 AM   #1
TriciaK
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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
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Old 04-12-2011, 11:41 AM   #2
Sheila
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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
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 04-12-2011, 11:43 AM   #3
ElaineM
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Wink 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.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
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Old 04-12-2011, 11:25 PM   #4
Adriana Mangus
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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.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane

Last edited by Adriana Mangus; 04-13-2011 at 12:07 AM..
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Old 04-13-2011, 12:03 AM   #5
Adriana Mangus
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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
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane

Last edited by Adriana Mangus; 04-13-2011 at 12:16 AM..
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Old 04-13-2011, 12:25 AM   #6
Trish
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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
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 04-13-2011, 07:13 AM   #7
Lori R
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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
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 04-13-2011, 10:42 AM   #8
TriciaK
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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
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Old 04-13-2011, 12:42 PM   #9
schoolteacher
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Re: What to do now??!!TriciaK

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

Amelia
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Old 04-13-2011, 03:04 PM   #10
Pam P
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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
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 04-13-2011, 04:27 PM   #11
Becky
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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
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 04-16-2011, 05:40 PM   #12
Gerri
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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,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
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