Anyone had a recurrance after Herceptin?

Hello - No I have not had a recurrence but I wonder the same. I finished #17 Herceptin 9/21/07. I had 4 rounds chemo prior to surgery and 33 radiation. I have a lot of shoulder, chest and breast pain. I was told this is inflamation and related to cycle. I was diagnoised 6/21/06. I was misdiagnoised with bone mets at one point. Now I have Mammogram and MRI June/July 2008. My doctors said if anything is bothering you have it checked regardless. How often are you seen or what are you doing now. 1 Mam and an MRI doesn't seem like enough to me. I wondered if you have the same? I think of the recurrence daily.

where are you? how old? how often do you get seen? i am just wondering what is a standard check list now?

I did herceptin for a year and had recurrence about 6 months after I stopped it. Recurrence was to supraclavicular nodes, under arm and liver. Stage 3 original diagnosis, now Stage IV. Am doing tykerb now which specifically targets HER2 also and it is working...slowly.

just wanted to comment on the post-treatment pain.  I had such pain and stiffness in my shoulder-front and back-pec area and underarm that started up a couple of months after rads.  then I started having lower rib pain.  my docs were sure it was from the rads.  I did theraputic massage weekly for a few months.  went to a therapist at my cancer center since she had to work on my mastectomy side, I was more comfortable with someone who works on cancer patients.  but, what really helped me was swimming.  I did alot of arm work in the pool with styrofoam barbells, and also did laps later when things loosened up.  as for the rib pain, I was sure it was mets, but had a clean pet scan.  eventually, nearly a year later, it just went away.  I think that rads do so much more damage than we expect, and the pain can last for 2 years or more, so says my bs.  I really recommend swimming if you can.  best, Pat

ps, I finished herceptin a year ago, so far, so good. p/ 

I had 6 weeks radiation, finished in July 2008.  At Christmas time, I had lower rib pain for a week.  I have had 23 out of 36 Herceptin treatments.  My onco told me not to worry about the pain, he thought it could have been pluesey (sp).  I knew it wasn't and asked for a bone scan, he said it wasn't neccesary and after a day of milling it over, I called him to demand it.  It was clear for mets.  Thank goodness.  I am not going to allow myself to be "blown off" any longer. I was told "Don't worry, it's not cancer" and it WAS!!!  I guess it takes a lot of pain and suffering to become a B@*#^.  But that what I am now

I'm confused. I don't quite understand your treatment regiment since you say you had a mastectomy and then a partial mastectomy on the same breast. Where did you have the recurrence?

Nootie, if you have concerns, your onc should write you an rx for a bone scan, if for nothing more than peace of mind.

This is my first time on this site, so I apologize for not abbreviating things, as I'm not sure what some of them mean.  I was diagnosed with IDC in September of 2006.  I did a bilateral mastectomy 2 weeks later, cytoxin and taxol as my chemo and a year of Herceptin as I was both ER/PR+ and Her2+.  My nodes were negative.  I had my last Herceptin in December of 2007, had a chest, abdomen and pelvis CT and a brain MRI 5 days ago.  All is clear .  I have had a pain in my rib "area" that hasn't been consistent, nor in the same spot, but on the same side.  I have read a common theme regarding rib, clavicle and even shoulder pain following treatment.  So here are my questions:  is the pain from radiation that people speak of?  does anyone know of a Stage 1 (tumor was less than 2 cm) but ER/PR+ and Her2+ recurrence?

I have these strange pains as well--I have four more Herceptins to go.  As Mary Jo can attest, I am constantly freaking out about having mets on the her2 board.

All I can say is, get it checked out so you can know that it's nothing!  Peace of mind is the key at this point!

Take care,

Krista

randi, i'll let you know monday - that is if i am not too hysterical.

my node biopsy in abdomen  onc said was cancer. path report said breast mets. so onc ordered a comparision with slides from original path in 06.  she doesn't think its breast.  if it is then that means herceptin did not work for me.  oh joy.  for your original question i have arthritis pain and fibro pain all the time but aside from that was feeling quite well.  haven't had a bone scan since before mast but no hot spots showed on pet anywhere else except nodes in belly area.

well i for one can answer that for sure now.  it failed for me.  the lymph nodes in my belly are positive for bc metastasis so onc told me no the herceptin didn't work for me (i'm her only patient that it didn't work for)  i will be getting other opinions to see if the xeloda, tykerb combo is the right thing to do. i read that herceptin does work for 85% of those who get it.  i always seem to be the exception.  i will do whatever treatment is advised but i have to wonder if the tykerb will work for me either.  but as i said earlier it does work for most so until you're told otherwise assume it is working for you. i had my last herceptin jan 7th and feel quite well.  my pet scan showed hot spots in belly nodes and the biopsy last week confirmed it.  i did however have 9 very positive nodes so the possibility for me for spread was very high.   perhaps you can have the bone scan as others have suggested and put your mind to ease.  will keep you in my prayers for "no problem" report.

maria

yes i blood was constantly checked.  my markers were normal till nov when cea went up to 20.8 - onc repeated and it was 18.7

i finished herceptin jan 7th and she does a routine pet after finishing treatment.  she was however very concerned about a different cancer since the ca27-29 remained normal.  as you've probably read from previous posts, i had hot spots in atypical spot for bc mets so had biopsy.  she also repeated cea at that time and it was up to 47. when the biopsy  came back bc mets, she had them pull original slides from 2006 for comparison and the conclusion was bc mets.  so that means herceptin did not work for me and i'll be going for several consultations as to the best drugs to use next.  her opinion is tykerb and xeloda but wants me to have benefit of expert opinions.