Going to onco Monday

Wow, Anna, I've never seen ILC with ER-/PR-, HER2+. I've seen triple negative and triple positive, which are also rare, but never your combo. Have your docs ever seen ER-/PR-, HER2+ ILC before? I'm just curious.

So glad to hear the PET was clear. The other good news is that negative ER/PR cancer tends to respond very well to chemo, and Herceptin is practically a miracle drug for the HER2+ girls. So you should have a good response to treatment.

I know it's scary with Stage IIIC and all those positive nodes, but remember, nothing is a slam dunk with cancer. There are Stage IV girls who started out with Stage I or II, ER/PR+, HER2-, node negative cancer (and who technically should have been "fine") who end up with mets. And I remember one onc telling me, "I have had lots of patients who I thought should have done well but didn't, and ones I thought were gonners who ended up doing very well." So with that in mind, just take one day at a time.

Big hugs to you.

Anna,  Just wanted say hello.  Come here to talk, it helps to get your questions answered and to be with people who have bc, too, and understand.   You have good treatments available against the Her2 and you are getting good care.  Let us know what your onc says.  HUGS. G.

Anna, I'm the husband of a wonderful woman diagnosed with bc in April. I've been posting on the "Chemo: Before, During, After: thread for the past week but wanted to see how woman with my wife's diagnosis are dealing with ILC.  I'm unsure if she is a stage iib or a stage iiib.  I've yet to ask the question specifically and am having a difficult time trying to study it out on my own.  Anyone know the difference?  I'm doing all the leg work because my wife, Diane, just wants to focus on beating this thing.  I like studying it out because it keeps me busy as well as provides me a better understanding that makes me feel more confident and also allows me to answer any questions my wife may have. 

Depending on who you talk to - her surgeon (we love her) or her onc (who is well respected in his profession but tends to talk too quickly and jumps from topic to topic) - they found cancer in 4/14 or 4/17 nodes.  The nodes closet to the tumor were full of cancer; no lab work needed (although they did the labs anyway). The surgeon removed all of the lymph nodes in her right arm on May 6.  Her PET scan came back with some activity in her thyroid, lung, liver, and ovary with only the thyroid and ovary being a concern.  The thyroid biopsy came back negative (finally, good news!)  They've yet to look at the overy. So what does it take to move from stage ii to stage iii?

Diane began chemo last Thursday with A/C and Sunday (day 3) was her toughest day.  She's scheduled for chemo every other week for four treatments (1 down 3 to go) followed by another four treatments of Taxol every other week followed by 6 weeks of radiation.  She got her hair cut short today, in preparation for the "fall out" and is rather tired.  (Can't wait to get home to see it!) She failed to take the Decadron yesterday for fear that would keep her awake.  Unfortunately, it also PREVENTS nausea so by noon, she was feeling rather nauseous.  The Phenergan helped a bit.  (She likes that because it makes her tired.  She has a VERY tough time sleeping, with or withour cancer.)  I told her that she can be awake at night throwing up or she can run the risk of being awake at night but feeling better.  She took the Decadron this morning.

Best of luck and hang in there, each one of you.  Tom n Di

Good luck with the chemo tomorrow, Anna. Keep us posted. Big hugs--you'll be less scared once the infusion gets going, I promise.

Anna - from what I've read from other women, staying active and drinking lots of fluids, especially Gatorade, seems to help with the s/e.  Don't want to scare you but be ready for Day 3.  The good news is that, for the most part, it's just that one day that's the worst, at least from what I've read and from the experience of my Diane.

Nash - Diane had the Emend (one a day for first 3 days) plus Aloxi (i.v. drip) during chemo-time. It's obvious that it wore off by Sunday.  The Decadron appeared to have helped Monday.  She was SO much better on Monday - even went to a hamburger fry last night.  She's still tired and doesn't have the stamina that is so characteristic of her.  But still a real trooper.  We're meeting with her onc on Friday and will pursue the ovary issue. Not sure if Diane's pre-menopausal or mid-menopausal and I'm not sure the role that plays in all this.  I failed women's health in high school; just wasn't interested.  But I've sure learned a boat-load in the past two months!

Thanks for the link.  I've read it before but am still confused.  She's definitely a stage ii a "the tumor measures 2 centimeters or less and has spread to the axillary lymph nodes." However, I'm not sure if the cancer has "spread to axillary lymph nodes that are clumped together or sticking to other structures." During her lumpectomy the surgeon's assistant came out mid-surgery and told us that there was visible cancer in at least two of the nodes. Ended up 4 of the 14 removed.  Just don't know if they fall into the "clumped together" category.  If I can chose, I would prefer the iia over the iiia or iiib.  Don't know if it does a lot of good knowing. We're already on this journey. Does it really matter why?

Thanks for your input and for sharing.  All the best to each of you.  And thanks for letting me sit in the back row of this very impressive congregation of women.

Tom

nash -- I have a sheet of  paper with notes on it from the onc. We need to go over it again with him because at the time he first explained it to us, we were both in a bit of a daze.  He did say that was a grade 2 tumor but I don't recall anything about what stage it was at.  He also said that the tumor was 7 mm but the surgeon said it was closer to 2 cm.  I think the final lab report said it was about 1.5 cm.  The surgeon said 4/14 nodes; the onc said 4/17.  I don't know if all that makes any difference.  We're doing the chemo thing regardless.  I was a little disheartened to learn that the odds of my wife being alive in 10 years AFTER chemo was only 13% better than if we did nothing (65% vs. 78%).  I really expected a bit more bang for the buck.  In fact, we seriously considered not doing chemo.  But after doing some more research and some rather serious discussion, Diane decided that she needed to do all she could to get rid of this thing.

Thanks for your help.  There are times when this can be difficult but I must be strong for both Diane and for our kids, all of them. (Five kids, 3 grandkids.)

Anna, glad you checked in. Tom is right, watch out for Day 3. Day 4 isn't that terrific either. But I always felt functional by Day 5. And I totally overdid it my first cycle, trying to be Superwoman (I have 2 young kids, and my late Stage IV bc mom was alive at the time, and I had to take care of her, too). But I learned my lesson, and cycles 2 through 6 I made sure to take it easy on Days 3 and 4. Things went a lot smoother that way. Good luck with the MUGA--ah, the joys of Herceptin. And, yeah, one sort of becomes a professional patient for awhile. This will all pass eventually, I promise.

Tom, hope Diane's bloodwork is good today. Keep us posted on her ovary issue.

Tom n Di, I took EMEND while on A/C and did not have any problem at all with nausea.  Check with her Onc on that, it should do the trick.  Kathy

Hi Tom,

Ask your wife's onc. about Zofran and Compazine.  I also took Emend for 3 days, but also took Zofran after the Emend was done, and had a script for Compazine on hand in case I needed it.  Compazine is a very very strong anti-nausea med if things get that bad.

Also, I wouldn't put too much emphasis on the staging thing. It's just used for the oncologists to make up the treatment plan.  I too got a little crazy about my stage, and my onc. told me not to worry about it. Plus reading too much online sometimes is not a good thing also.  Too much conflicting information out there.

Best to you and your wife!

Sue