HER2 & Hercepton for Stage 3

Hello,

My husband was diagnosed with stage iv EC, mets to a few lymph nodes and right rib, He showed positive to the HER 2 gene and received Herceptin, however it helped with the lymph nodes and the rib, but did not arrest the primary site. He just completed radiation/ chemo , very tired , with weight loss, difficult to eat, no interest in anything.. and I can go on and on...

While Herceptin is being acclaimed a wonder, it does not work on everyone, indefinitely, not to sound callous .

If offered, I suggest you go for it and see where it takes you,

Best,

Although my husband is Stage IV, he does take Herceptin along with his regular chemo infusions.  After you find out if he is positive, ask your doctor what your options are. Is it a randomized clinical trial or an experimental therapy using Herceptin at a different dose or combining it with other drugs to measure effectiveness?   I thought Herceptin was considered standard therapy at this point.

Best of luck to both of you.

goty2001 said:

10 months

I was diagnosed stage IV EC 12 months ago, started out on 3 chemo drugs but then reduced and went onto herceptin 10 months ago. I credit it with reducing my tumour and making mets invisible. It also has virtually no side effects. Anybody Her2 positive& EC should at least be asking for a good reason if they're not on it..

Hi

Are you currently on herceptin? When was your diagnosis? My husband diagnosed with stage IV EC, Dec. 2011, has been on chemo, her2+, took Herceptin for one cycle, not on it now. Just completed radiation , waiting to do a scan and then now whats next.

Best

jcarol said:

Moving along but too slowly

We are definitely using Dr. Orringer as Clint's surgeon.  I think we will also end up in A2 for chemo/rad as Clint is concerned about having the "team" available if there is trouble.  We would then try to go to our home up North on weekends if Clint feels up to traveling. (It was interesting to find out Dr. Orringer has a vacation home in Glen Arbor where we live) We have an appointment for the CT for radiation next Wednesday and would start chemo/rad the following Tuesday.  We are having a terrible time getting an answer on the HER2 question though.  We spoke to the research director last Thursday who said she was "expecting" the biopsy sample on Friday from Beaumont.  However, she was not sure if there was enough material and would not know until it was sent to the lab at Brown University.  If there was not enough materail then he would need a new biopsy via endoscope and even more time passes.  I called her twice on Friday to make sure the material was received but she did not return my calls.  I plan to call our patient advocate (not her real title but) and raise hell.  The lack of personal responsiveness is a big problem in dealing with a major facility like this.  We do have appointments in Traverse on Thursday and Friday with radiation and oncology in case he is HER2+ and if we could get Hercepton there.  

Is Larry going back to U-M for follow-up on his problems or is he being seen at a local facility.  Another thing that was mentioned at U-M was that a numbing agent might be given if a sore throat made eating difficult.  Has Larry tried that route?

Thanks for keeping in touch.

 

Hi, I don't know how I missed this post. By now I am assuming that Clint has started his treatments. I hope that is going well. Larry really had a difficult time with treatments, most don't experience much for a few weeks. I wish you the best. Larry has had several follow ups at U of M. Dr Orringer has tried endlessly to achieve relief for Larry. He truly only needed to be dilated 2 times. There is something else going on with his throat or larynx, or whatever. He is currently going through testing at Huron Valley Hospital. Karmanos has been wonderful with Larry as well and has worked hand in hand with U of M. Testing is easier locally. If anything surfaces he would be treated at U of M.

I am surprised that you are having a problem getting someone to return your calls, I have never had that problem.

Please keep us posted

Laura

hello, 

those of you who travel while on herceptin, how do you do it? do you make plans in hospitals where 

you are visiting to get treatment?

thanks a lot for your answers.

best,

danièle

thanks goty 2001 for your information about travel .

How long have you been on Herceptin every three weeks? 

ARe there messages with your health profile ? 

I'm interested because my husband just started Herceptin this year ,has had six cycles of folfox along with herceptin every three weeks. 

We are in paris France and our oncologist said there is not much experience here with using herceptin by itself for treatment.

thanks again ,

danièle