Any Her2/Neu Starting Chemo in October?

I was diagnosed a few weeks ago with DCIS and when they did the MRI found a tumor in the other breast which is HER2. I feel extremely upbeat on the first diagnosis and even the second but HER2 has honestly taken my breath away. I have surgery this Tuesday and then will hear what is next.

 I would be lying if I didn't say I'm scared and dread the chemo and other therapies.

The Herceptin hasn't giving me any side effects but the Taxotere has (try sour candy for the metal mouth taste, it has work great for me) and the shot to boost the white cells (the bones really hurt.)

I started Sept 18 and on the second and third week I have Herceptin.  I will be doing this for 4 1/2 months, then surgery and back to chemo and radiation.

Hey there,

I just wanted to say Hi, I had my last chemo on Monday, and even though it seems like it takes forever, it will be over   I had chemo first, so still have to have surgery.

Anyway, good luck to you guys,

Laura

KimmySue,

No, I did not know about the Clariton, and thanks about the advice, my husband was doing it on the arm.

I will have to do the shots again this Sunday for 7 consecutive days.  I lost most of my hair by last Thursday so I went to shave it on Friday.  I thought it was going to feel worse (I had cried a lot several weeks ago about this but now that I actually did it it wasn't so bad).  Even my kids like my new heardo.

I've got a date - I'll be starting October 27 for 6 rounds of TCH. We are doing the herceptin once every three weeks with the TC, not every week. I had read that that achieves the same dosage level as weekly so I was glad when my oncologist said that is how she prefers to give it.

She said that low white cell count isn't as much of a problem with this therapy but that if I needed something she prefers to use Neupogen - it is less strong than Neulastin and having too many white cells created can be bad for the spleen.

I just found this board, and I'm SO glad too. I just started my treatments on Sept 22. Had the port put in on the same day AND started my period about an hour after coming out of surgery. I think that was some kind of cosmic joke.

In any case, I'd love to join your discussion if it's not too late. It would be so nice to talk to others in the same boat.

My treatments are Herceptin and Taxol for the next three months every week. The it shifts to FEC and Herceptin until March. Then surgery, radiation, and six more months of chemo. I try to only think about the month ahead - any further and I start to get a little overwhelmed.

We have four young children (4, 5, 7 and 8) and I refuse to see this as anything other than a blessing. Besides, I'm really looking forward to hat-shopping! That reminds me, has anyone started losing their hair yet? I have my third treatment tomorrow and still nothing. I keep expecting to wake up to a pillow-full.

Anna (LuvLafLern)

Kimmysue ~~ thanks for the welcome.  My side effects have been moderate -- not too awful.  I haven't had any nausea which I attribute to the Aloxi they give me by IV before my "big" chemos, as well as the steroids (by IV and also oral Dexamethasone).  Regarding hair, I started losing mine between week 2 and 3 after the 1st chemo.  Before that, I had my hairdresser give me a pixie cut.  The day after it started falling out, my husband clippered me in the shower (lol) to about an eighth of an inch and I started wearing some wigs my sister & I had shopped for earlier.  Later, my hairdresser clippered me using a zero setting, then finally my husband and I shaved my head last weekend.  Bald CAN be cute.  Even sexy.  I've found you've got wear more makeup, though, to achieve the look.

Bluedasher ~~ the wigs I got were relatively inexpensive (together, the 2 cost me about $85), and now that cooler weather is coming I'm enjoying the warmth!  I haven't found them to be too scratchy.  I also like my ballcaps.  Or just going bald (if I don't have any red spots on my head --ewwwww -- another side effect of the chemo, I'm told).  To combat that, I've been using peroxide then neosporin twice a day.  Seems to be working.  My head gets cold at night (I love sleeping in a cold room under a deep comforter) so I've started wearing a turban to bed.

One bit of advice:  If you can, get your docs to implant a port in your chest.  It makes getting the chemo SO much easier!  I've had no pain from the injections/IVs at all, because they gave me a numbing cream (EMLA) that I rub on the skin over my port about an hour & a half before.

My white count takes a nosedive during each round (earlier each time) and my chemo nurse has had to put me on "restrictions" twice, but I haven't needed any shots. I heard that they DO hurt ... lots of bone pain ... so I'm hoping I won't have to get any.

TTYL, ladies.  I'm glad I found this site and all of you!

Gayle

I am Her2/Neu, but started chemo in August.  Actually had 1 tx of Herceptin only on July 28.   I had severe anemia, caused by severe fibroids, so I had hysterectomy Aug 1.  My SE are very mild as far as I am concerned (I felt worse 6 months ago than I do now), but hair loss is definitely one of them.  I love the cold temps and a heavy blanket too, but reality is I live in south Louisiana, it's always hot here and the stork should have dropped me in Alaska!  To all who say "a wig is hot", I'm listening to you.  I've had one since August and have yet to leave the house with it on.  I wear a bandana and a baseball cap.  I'm focusing on the bonus... I don't have to shave my legs or my underarms now!

My tx: Herceptin, Cytoxan, Epirubicin, Taxotere, every 3wks.  I also get Benadryl, Ativan, a steroid, and an anti-nausea pre-chemo, I get Heparin and Neulasta post.  The Neulasta causes some bone pain, mainly thighs, hips, upper arms, ribs and spine, but they go away in a few days. 

Ask your dr. about the Topo-2 Alpha.  My onco told me he only heard about it the night before my first visit.  They had me sched for Herceptin, Carbo, Taxotere but changed it when the "positive" for this test came in.  I don't understand the whole explanation of that particular test.  My gyn and my breast specialist had no clue what this test was or what it referred to.  I think it's another tumor marker, but I know "positive" changed the course of my treatment.

This is what I found on the Topo-2 Alpha test. I'm going to ask my doctor about it when I see him next week. Thanks chelli!

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March 1, 2008
Oncology News International. Vol. 17 No. 3

Topo 2 alpha test FDA approved

ROCKVILLE, Maryland-Dako's TOP2A FISH pharmDx assay has received FDA approval for use as an adjunct to existing clinical and pathological information in determining the prognosis for patients with relatively high-risk breast cancer.

It is the first approved test for assessing clinical breast cancer tissue specimens for amplifications and deletions of the topoisomerase 2-alpha gene.

This information aids physicians in evaluating the prognosis for breast cancer patients, since patients with normal topo 2-alpha status have a better outcome than patients with topo 2-alpha gene amplifications or deletions.

The test is suitable for breast cancer patients who are premenopausal or for whom tumor characteristics, such as tumor size or lymph node involvement, suggest a higher likelihood of tumor recurrence or decreased survival.

Topo 2-alpha appears to be a molecular target for the pharmacologic action of anthracyclines, with implications for use of these agents, the Danish-based company said. In a new analysis of the BCIRG 006 trial data, anthracyclines were beneficial only in the subset of patients who had co-amplification of HER2 and the topo 2-alpha gene.

HI everyone, I am almost to the end of my chemo routine - 3 more weekly Taxol and Herceptin, pre surgery.  Had 4 rounds of Dose Dense A/C  and the tumor had shrunk 20% or so.   It is now 75% smaller and I will do a surgery consult in a week or so.   Oncologist says lump is gonna do it for me, then herceptin every 3 weeks for total of a year.   I had neulasta after the A/C tx and took 2 extra strength tylenol just before and had little achieness.   Each of us is different, so do not be afraid to discuss any side effects or problems with your doctors.  my hair was gone about 15 days after my first Dose dense tx, as was predicted. 

I am 62, so way past menopause and I think that those who are pre meno have a different protocol.   And I have not had surgery yet.  

I highly recommend a port.  Each time a vein is used - even for routine blood work, a small scar forms and over time, they have to go higher and higher to get a good spot.   Ask dr for a Rx for "cranial prosthesis" - also known as a wig.  some insurances will cover it.   Yes, wigs are hot but I can wear for few hours to make myself feel more "normal".  Hats, scarves and turbans are great and as it gets cooler, I find a sleep cap is good.   

With the port, there is one ouchie as they put needle in and one as they take it out - maybe 2-3 seconds.  I do not use numbing cream.   The metal taste is when they flush the port too fast,  ask them to do slowly and suck on ice chips.   

I know I am not an october start, but thought I would post to give some helpful info.  When I was dx, I read ALL the posts I could find.  I am the type that wants to know.  Got various meds on hand for possible constipation, diarrhea, mouth sore, etc and my kitchen counter looked like a pharmacy outlet.   DO NOT be afraid to ask dr for anything - they are the experts and it is not dumb to ask or be curious or concerned - it is dumb NOT to ask - MY opinion.

Good luck and i will check back from time to time. God Bless and may you all have a good weekend.  Nancy 

Hello, I am new to this site. I am a 32 year old mom of 2 toddlers. I was recently diagnosed (5days ago) with ibc her2/neu. I think I am still in disbelief. It all seems like massive amounts of information right now. Names of too many things and my brain hasnt even processed the fact that i have cancer yet. My dr says I will start chemo on the 15th and I will be getting A and C ( have the names written downbut still trying to get info on everything) in addition i will be getting herceptin and a drug called lapatanib. They say chemo will last 6 months followed by surgery and then radiation. This is all assumming the scans i had on friday show that nothing spread past the lymph nodes. I have read so much online, but its all kind of clinical, and I like hearing peoples actual experiences.  I am glad to hear the stories of people walking in front of me. So many unknowns can really make you anxious.

Teena,

We're on the same schedule. However, they won't start my Herceptin until round #3. I buzzed my head last Thursday, I didn't want to wait for clumps on my pillow this week. I'm a dental hygienist and needed to look "normal" at work. The wig is easier to wear without hair underneath it. I still need to schedule my port. My hubby left for Germany Oct 4 and I wanted to wait until he comes back to go in for that. Round #2 10/24 is the day he comes home.

Linda