Can we start a HER2 roll call?

mmm5

Hi ladies-

I have been through the ringer lately with side effects from treatment, I posted earlier on hip pain.

We all thought it was Arimidex but being off Arimidex, for a week no change in pain.

I have been through xrays and MRI now and I am just plain scared!!  My Onc's just don't think I would recur so early and still on Herceptin, Arimidex etc, because of my early stage at DX.

Can we put a call out there to see if Her2 gals that have had Herceptin remain NED, My Onc this week said that he does not have a node negative pt that has recurred on Herceptin....yet~

He has been giving Herceptin to early stage since 2005!

malleme

HI

I just started Chemo- taxotere, carplatin? and Herceptin. Neluasta, Deadron and most people told me before hand that the Neluasta caused that pain in the hips and joints.  I was actually warned that until you don't recieve Neluasta most people think its from one of the chemo drugs.  check the New March Chemo chat here. 

my DX 1/16/09 IDC .6cm Stage 1 0/1 nodes, ER+PR+HER2+

helena67

Add me to the list. Maybe you can ask your oncologist about his experience in node-positive patients. I always get these 'either it comes back or it does not' answers. Geez... 

mmm5

Helena67\

Hate that answer, but I will tell you I have one friend and a relative of another here locally that both had stage 3, one with golf ball size tumor and 8 nodes, one with 4cm tumor and 6 nodes and both are doing fine after five years and both had Herceptin, one only for 4 months due to heart damage. These are the only 2 people I know personally with Her2 and both are great!

ejlj

still ned here.  my one year cancerversary is right around the corner!  tina

mmm5

Ejlj

We were dxed same day, have you finished your Heceptin?

AmyA7

Howdy All! I'm very grateful and thankful for herceptin. I highly recommend watching the Lifetime movie, Living Proof about getting herceptin approved by the FDA and Dr. Dennis Slamon that was the crusader for these trials. It's so inspirational!

I've been on herceptin since June 2008 until June 2009. Node negative and 6 rounds of chemo- taxotere & carboplatin (June 2008-September 2008) didn't experience any joint pain and minimal side effects. NED and I'm approaching my one year cancerversary!!! Woo hoo!!

mmm5, it may just take more time for the side effects to subside especially from Armidex. I read another posting on this site that said taking 500mg daily of magnesium has helped with the joint pain side effects of Armidex -- some one said they felt relief from joint pain after 5 days of magnesium. -- just thought I'd share. My mottos that got me through this past year "One Day at a Time" and "This Too Shall Pass". Also, as sense of humor helps -- hard to do when you are experiencing pain I know but please stay strong!!!!

helena67

Thanks mmm5,

Good luck with the MRI results! But I understand you are stressed.

I have some hip pain too - we discussed it a little bit in an earlier thread. I already had it before I started the aromatase inhibitor but in any case it's still there a little bit off and on. I have all kinds of pains & aches, if not in my shoulder (on the mastectomy side), then in my hip, etc. I take some ibuprofen before I go to sleep now so that I sleep better. I am sure that the aromatase inhibitor does not help.

I don't know if it really helps you to hear the 'ME TOO' story but chances are good that you will be fine! Well, maybe some osteoarthritis and the annoying thought that we are all getting older...It might getter better simply with a good NSAID for a month or so or some PT...

Oneworker

Many of the women on my home thread have had joint pain, very few were on AIs or Herceptin. But all were on chemo.

You aren't going to see this kind of effect resolve within one week. Try to relax. Chemo is very hard on our bodies. It can take a couple of years for us to fully recover from the effects.

ejlj

happy cancerversary mmm5!  still on herceptin and don't know when my end date is yet.  I started with neoadj chemo with hercetin for 12 wks, then had to stop for surgery, and AC.  I restarted in October, so I think my 1 year restarted at that time.  I've asked MD, but haven't gotten a straight answer.  Are you soing anything to celebrate?  My husband is taking me to France (it's also a business meeting).  I feel a little strange celebrating, but it was good excuse to travel somewhere we hadn't been before.  Tina

malleme

Happy cancerversary to all of you and enjoy France OH wow

pameliza

Hi there! 

I had my last Herceptin treatment in February and I am NED.  I was diagnosed Oct 2007 and have had a mastectomy w/ reconstruction, Taxol x 12 with Herceptin and then Herceptin every 3 weeks for the remaining 9 months. I also have had hip pain and more recently upper back pain. I was told I had a "bone island" on my hip bone.   

I was SO happy to finish my infusions!  I am getting my port out on Thursday - YIPPEE!!!   Pam

JeninMichigan

Here are two storie for you.

First - me.   Stage IV from the start with mets to liver and bones.   Started chemo (TCH plus zometa) 5/1/09.  6 cycles.   Still do Herceptin plus Tykerb.    Was NED after 3 cycles and just had pet scan and still NED.    My oncologist said Herceptin for life UNLESS Tykerb proves itself to be as effective.   

Second - my friend.  3 time BC survivor.  First two in the breast (one then the other) - ER+ but her neg.   The third time it spread to the liver.  After a new path on the liver biopsy, the cancer had turned HER positive.  She completed round three of chemo and has been on Herceptin for over 4 years with no reoccurance.  She is NED.    :-)

Jennifer 

lexislove

Interesting thread!

One of my oncs has stated that since giving Herceptin he has seen very..very few recurences. I think in about 5 years or so we should see results of the the HERA Trial regarding long term prognosis regarding Herceptin.

Can't come quick enough in my eyes..lol

SusieSwan

My onc says the same...very few recurrences after Herceptin.  I have my two year cancerversary next month.  I've also had hip pain that comes and goes...as well as some stomach issues but I remember with my first chemo, that almost killed me, everything feeling different and I've never "felt" the same since.  Also thrown into chemopause at 41...it takes it's toll.  But I'm still here and I'm NED.

Hugs,

susan

lexislove

Ohhhh...btw..Happy Cancerversary to all the ladies who are celebrating!!!

ejlj

Hi Pam-I got one of those bone island things too.  totally freaked me out shen I was first getting my scans but they say it's o.k. 

Jen-so thrilled to hear about your NED news.  that really is incredible!  All I've heard about tykerb is the benefit it adds to crossing the blood-brain barrier where herceptin does not.  In othr words, they believe it helps treat or prevent metastatic brain disease.  That might be worth discussing with onc.  Wish you well-tina

lexi-mellame-thanks  tina

2KidMom

I finished Herceptin in December...was diagnosed Sept.07 Stage I....still NED!!

bengal

Hello you can add me as well and I agree with AmyA7 that I am so grateful to have Herceptin.

I only hope that I had enough treatments. I had to quit due to heart failure. My EF went from 55% to 25% after getting it every three weeks for 12 doses. Its now up to 40% after taking Coreg, Lisinopril and Digoxin for 5 months and counting. My onc was only going to give me a total of 18. He said some studies are showing that 12 are as effective.

PET scan clear. Dr. Slamon is a hero.

8rs

I have a quick question??  When do you celebrate your cancerversary?  Cancer free from your diagnosis date or when you stop chemo treatments?

Mitch56036

Hi,

I started Herceptin Oct 05 and finished Nov 06 - still NED and hoping to stay that way.  I was diagnosed Feb 05, mastectomy March 05, Chemo and then radiation, then Herceptin. Also on Arimidex.  I suffered alot of aching, stiff joints for at least the first 12-18months then it started to reduce.  I have put them down to Arimidex and although alot better now I still have my moments and I wonder sometimes if its just a combination of everything.  I had full CT scans and bone scans that showed nothing although my bone density has reduced slightly (obviously from the Arimidex).  I have had to push my oncologist for the scans but it has given me peace of mind.

Dx 2/05 Stage IIB, Grade 3, ER/PR+ HER2+

EGAL

Finished Herceptin May 2008 and was dx'd with brain mets Sept 2008.  It sucks!

janet11

I'm almost to the 3 year point after being diagnosed with Stage I.  I couldn't get through the full year of Herceptin due to heart damage (but a year and a half later, my heart was back to normal).

No recurrance, no problems.  My hair never came back to "normal", but that's the only permanent side effect I've had.  So I wear cute hats (*smile*).

My only problems now was that I was laid off 2 months ago after 21 years with IBM (*sigh*).  The BC hasn't been an issue for me other than getting checks every 6 months from my onc and my surgeon.

lexislove

I will be 2 years since diagnosis in September 2009. I finished Herceptin November 2008.

Sassa

8rs,

There was a discussion about cancerversary on another thread.  It appears that your date has to do with your original diagnosis.  For me(stage 1, treatment of 4ac and then one year herceptin), my date was the date of my last AC. 

For another woman who was later stage  (Stage 3, chemo, rads, herceptin and then AI for 5 years), her date started after the chemo, rads and herceptin were finished.   

mmm5

Sassa

What a great inspiration, when did you finish your Herceptin?

Mitch, you state that your aches and pains subsided somewhat after 18 months? I wonder if when we triple positive gals have Herceptin and AI's at same time that are virtually doing some of the same things we have a few less SE's when Herceptin is done?

I am really experiencing great SE's was on Arimidex for 5 months, switched to Femara and now after 3 weeks all SE's coming back. Also on Bisphos trial so 3 meds, one more Herceptin to go!

Estepp

Egal.. did you have a brain MRI in the beginning.. before any treatment started?

Mitch56036

Yes I think it is a combination of all treatments and at times I felt unbearably sore and achey in my joints  - I couldn't try a change of medication here where I live unless at a huge cost and I had already had to pay for Herceptin out of my own pocket (insurance wouldn't cover it and the Government didn't approve it until late last year).   My oncologist has had 3 patients with recurrences, either while still on Herceptin or within 6 months of finishing it - that is 3 out of 55+.  I pretty good result I thought.  I hope your scan has gone well and try and hang in there with the AI - the results to date  seem to be very positive. I found pushing myself to exercise more helped.

Sassa

Just received the results of my CT/PET scan and all other tests - NED, 2 years, 2 months out from the end of chemo (1 year, 2 months from end of herceptin).

suemed8749

Sassa: Congratulations and WOOPEE!!! I wanna be just like you when I grow up! I finished Herceptin 3 weeks ago and am waiting to get my orders for my CT/PET (my doctor sent it to the insurnce on Thursday.) After those results, I hope to be calling myself a survivor!

swimangel72

I finished Herceptin 2 weeks ago and am soooo happy! Not sure what further tests my onc will order - possibly CT/PET - I'm following in your wake Suemed!