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HER2 & Hercepton for Stage 3

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

I wondered if anyone has received treatment (not in a clinical trial) with Hercepton at stage 3 N 1(locally advanced).  We are waiting (impatiently) for the test results and if my husband is HER 2 U of M would offer a chance to be be in a clinical trial.  However, if her turns out to be HER-2 positive we would want him to actually get the Hercepton (if at all possible).   It appears that it is the one drug that has proven to make a huge difference in HER2 breast cancer and could increase the odds of not having recurrance dramatically.  

Thanks.

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Hi hope you are doing well. I believe their are people on this board who have been treated for this without being in a trial. I am glad that your appointment with Dr Orringer went well. Is he going to be your surgeon? I ask because I know he is retiring soon. Also I hope he gave you the ok to travel to Traverse for treatment. Just checking in...thinking of you.

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

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.

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

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

eternalife
Posts: 36
Joined: Apr 2013

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,

 

callerid
Posts: 99
Joined: Dec 2012

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
Posts: 71
Joined: Jul 2012

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..

eternalife
Posts: 36
Joined: Apr 2013

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

goty2001
Posts: 71
Joined: Jul 2012

Yes, I'm still on it.  Every 3 weeks.  It's the only drug I'm on. As I said - little or no side effects and I'm living life to the full (writing this from sunny Sicily on holiday!).  I just entered year 2 (following diagnosis and poor original prognosis June 2012) - and if this is what borrowed time is - it's fine with me.  At some stage the efficacy is said to wear off, but I'll be in no hurry to stop it. There is a stronger version (TMD-2) in trials at the moment which I hope will be available as a next step, if I need it. You should ask about it if your husband isn't put on it.

Deathorglory
Posts: 59
Joined: Jul 2013

I'm stage IV (recurrance in lung) and was identified as HER2+.  Fortunately for me, Herceptin was approved for my situation just a couple of months prior to my diagnosis.  At diagnosis I was told that 7-8 months was my life expectancy.  I'm at 19 months and have nothing bad showing up on any tests.  It's likely not a forever thing, but I'll take whatever I can get.  I hope you're able to find similar sucess.

dfd24
Posts: 79
Joined: Mar 2011

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

goty2001
Posts: 71
Joined: Jul 2012

i plan my travel so that i'm back at base for herceptin every 3 weeks.

dfd24
Posts: 79
Joined: Mar 2011

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

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