Anyone else w/ Her2+, ER/PR-, Grade 3 IDC ?

Metroplex -

I can't answer some of the generic questions you had, but the one I can take a crack at is why the doc mentioned that he would only got A/C if Her2 was negative.   That makes complete sense.

The reason why is that herceptin is used to treat Her2 cancers.   While herceptin is a wonderful drug, the big risk it poses is that it can be heart toxic - which is why the docs monitor your heart very closely while under herceptin care.   The good news is that generally, the heart toxicity is reversible once the herceptin stops.

Of all the chemo regimens, A/C is one that is somewhat tougher on the heart as well.   Therefore, many doctors will not give A/C in combination with herceptin for fear that it is too hard on the heart (in fact, there have been studies out there that confirm this).

That said, there are several regimens out there that have been shown to be good for her2 positive disease.  You mention a couple in your post.  TCH  is one.  

I have to get to an appointment now, but let me dig into your patent/generic question a bit more.

I hope this was helpful.

Jill  

Metroplex -

As one that has a port and has been through chemo/herceptin, I found it well worth it.  The reason why is that herceptin is usually given over the course of a year.    So...between the chemo and the herceptin - that is a lot of sticks and stuff going through veins.  I do know some ladies that did not go the port route and did fine, but others that did not go and found themselves with lots of "vein scarring" (for lack of a better word).    In all honesty, I can't even fathom going through this without my port.   I still have mine because I am still getting herceptin.   For the most part, I hardly know it is there anymore, but when they access it, I am glad I have it. 

I am obviously a little biased, but I think if you know up front that a year's worth of sticks and infusions is in front of you, then a port is probably worth it.   The rule of thumb I have seen in general, is that doc's tend to go for ports if there are more than six sticks involved in a treatment course.  

I will go back to my insurance and see what was "billed" for the port surgery.  That one I can find relatively quickly.

Back in a sec.

Jill

I also was initially diagnosed with IDC in April 2008.  ER neg. PR neg, HER2 positive, grade 3, stage 2B.  I had a lumpectomy and axillary node dissection (2 out of 8 nodes malignant.)  I took 4 rounds of AC and had echocardiograms every 3 months to check my heart's ejection fracture.  I then took 12 weekly treatments with Taxol and Herceptin.  After the 12 weeks, the Herceptin was given every 3 weeks for a year -- although I did not make it a year before a recurrence, so it was stopped early.  (Had taken Herceptin for 10 months.)  I also had 30 radiation treatments while I was taking Herceptin.  This summer, I have now been diagnosed with inflammatory breast cancer.  None of my local doctors or the doctors at MD Anderson Cancer Center where I was referred have ever seen a patient present with IBC after IDC while still in active chemo and radiation treatment.  Lucky me.  Was taken off Herceptin and am now taking Tykerb and Xeloda.  Surgery will be a few months down the road.  Regarding a port or not --- I had a port and am glad I did.  The first two weeks after the  port surgery were tough, but after that I never noticed it.  My current chemo is now oral instead of infusions, but I am opting to keep my port in case at some point I have to go back on intravenous chemo.  I just have to go and have it flushed once a month while it is not being used.  That is not a problem.  They just do it while I am at my monthly oncologist appointments.  Good luck.

I have been looking for a chat room with Grade 3, ER-/PR-/HER+ people for months now and am glad to find y'all.  I had a bi-mas 3/09 as I am 3rd generation and everyone in my family that has had it has had BC twice.  Good thing as my other breast had atypical hyperplasia.  AC was not an option for me as my mother had it her first go around and it gave her CHF (congestive heart failure).  I am on TCH, only have one tx left on 9/17 (thank God).  I also have a port and couldn't imagine going thru this without it.  Not only the chemo and Herceptin - chemo once every 3 weeks and Herceptin weekly, but the blood tests associated with the treatment also.  Not only will you have blood tests weekly to check your counts, but those of you that have BC/BS will have to have a blood chemistry the day before chemo (not even the Dr knows why - he doesn't need it).  In regards to your mother's insurance, talk with the finance dept at the Hospital, for those with limited insurance, most of the bill will be knocked down.  Also, contact the American Cancer Society and they can set you up with non-profit agencies that will donate toward your mother's bill. Metroplex, it's great your mother has you to help her, my mom had her 1st 15 years ago, then again 7 years ago, so I feel like I'm somewhat ahead of the game with my 1st go around.  Faith316, my mom did not have her cancers occur together during treatment, but her 1st one was ER+ and her second one was exactly like mine (guess I'm a mommie's girl) and the Dr told her it was unusual to have 2 different types of IDC breast cancer.  Goes to show we're all unique! 

I was dx in February 2008.  I was stage IV right from the start ....sort of.   Before my lumpectomy, I had a clean bone scan and CT scan.  After my lumpectomy, I had a PET scan and had mets to my liver and bones.    Amazing how fast this cancer can travel.  I did six rounds of TCH and after three rounds I had a PET scan which came back all clean ... no cancer.  I just had a pet scan a couple weeks ago and am still clean.   I am still on Herceptin and will be for life.  I am also taking Tykerb and will finish up my year of Tykerb in Februrary.    I am just slightly ER positive (less than 5 percent) so I am taking Tamoxifen.    I think TCH is appropriate for your mom given the damage to the heart with AC.   I think you need the chemo for the Herceptin to really work. 

If you call the American Cancer Society they will give you  huge list of contacts to get financial aid for you mom.  There are resources out there but it takes alot of leg work and persistance.  

Being Her + I would take as much Herceptin as you can get.

Jennifer 

Metroplex - my oncologist also had a chemo class, it was only a couple of hours and you learn a lot of information.  My class also had lots of pamphlets and books with more info on financial aid.  It shouldn't delay her chemo any at all as the Drs will get her in as soon as possible.

I have a friend who found a lump in one breast this last may and then had an MRI which found another cancer in the other breast- what was really odd is the tumors had different pathology- one HER+  and one HER-, I think both were ER+ but I'm not sure. She had some healing/infection problems post lumpectomy so they have delayed her starting chemo- but started her on Tamox and herceptin. She'll be doing TCH chemo (taxotere and carboplatin I believe)- somewhere on here there is a thread about that particular chemo regimen- ccbaby had that one and was ER/PR - HER + and grade 3.

I am sorry to hear about your mom's diagnosis. 

With stage 4 - she may be eligible for social security disability and therefore also medicare.  I would hope Medicare will pick up most of the cost.  Is there a social worker affiliated with the hospital your mom is being treated at?  They may be able to help guide you through applying for aid.

Good luck.

i thinnk you will find that there was a little more to it then just "comfort."  Ports are based on many things including the quality and availablity of veins.  I know in my case, I didn't have a choice, I didn't have any good veins that they could access. They tried and then I ended up doing the port.  They needed the port to get access to my veins. I hope all goes well for you.  Do speak with the social worker in the hospital.  There are resources available to your mom.  It does take some work to get them.  I would look at the thread on this board concerning a list of available resources for someone without insurance.

good luck

Metro,

 I wish your Mom all the best and hope you decide on a treatment regimen that is best for her. 

I had taxotere, carboplatin along with herceptin beginning Nov. 08 (did 5.5 cycles)  and am still doing herceptin until Oct. 09.  It is true that the AC regimen causes more heart damage and is not given along with herceptin.  Many patients opt to have TCH first, then the AC alone, then continue with Herceptin....depends upon your Mom's health and what the oncologist decides is best.  I am weakly ER +, PR- and HER2 pos+++, grade 3, IDC 50% and DCIS 50%. 

Also I did not have a port at all during all my treatments which were done in Vancouver, B.C. Canada.  They just don't like to do them unless a patient has veins that may not be able to stand up to chemo for 'x' amount of months because they worry about infection.  Some infections can get into the heart. I know there are many people who did/do have ports and did fine.  I preferred to NOT be reminded that I was getting chemo and didn't mind the temporary stick of a needle. Once it's in it doesn't hurt.  My friend recently finished herceptin and had a port all during chemo. She was extremely happy to be finally getting it out! I just think it's one less thing to worry about, but that's me. 

HUGS to your mom - she will get through this.  I hope you get someone to help with the financial side of things.  This is sure no time to have to worry about money!  Take care of yourself, too.

Tuckertwo