Any Her2/Neu Starting Chemo in October?

The hair loss was such a shock for me.  I had very thick naturally curly hair.  About 3 inches long and got it cut to an inch long after my son's wedding.  It came out in handfulls 14 days after my first DD A/C and was mostly all gone on day 16.  My sister buzzed the remaining fuzz off with my electric shaver and she then needed a drink (rum and coke).   I still have not had any alcohol since I began tx, but onco says I can have one now and then.  Rei - a sporting goods store - has some Buffs, which are seamless head covers, like a long tube you can play around with for different effects.   And today I noticed some fuzz, like a halo on the top of my head.   And I find I am more sensitive to air/wind blowing with no hair and try to remember to wear a scarf or carry one to cover the back of my neck.   

I take vitamins, but always have, terrilee.  Vit C, D, E, calcium, zinc, magnesium and B complex.  I am 62 yrs old, so the calcium is pretty common for my age.   B complex is to help with neuropathy and my husb also took it when he had cancer per his dr recommendation.  I would ALWAYS double check with your doctor and make sure you tell you are taking them.  

One thing you may want to check out is parabens in  cosmetics. there is some controversy with it, but it has been found in breast cancer tumors.   Google parabens and check it out for more info.   Since cosmetics go on top of the skin, the question is - do they penetrate and accumulate over time.  

Good luck for a good day and week.   HUGS,  Nancy 

Hi everyone.  I just met with my Oncologist today and I'm scheduled to start my chemo on October 29th.  So it looks like I'm in just under the wire!

 I'm Her2+++ Stage 2, N2 and my treatment will be TCH 6X, once every three weeks, continuing on for one full year with Herceptin.  I'm scheduled for port placement surgery on October 21st.  I underwent a bilateral mastectomy in mid-September, with reconstructive surgery.....still so sore from that surgery, so this chemo is just another mountain I will have to climb.  I keep thinking that if I can just get through that darned first treatment that the anxiety will lessen a bit.

I'm glad to meet you ladies....maybe that mountain won't be as steep with a few friends climbing along beside me????

TNT, I'm glad to hear that you're doing well after your first treatment.  That is so encouraging.  I am happy for you.  My TCH is Taxotere/Carboplatin/Herceptin.  I've noticed that some people get Cytoxan and some get Carboplatin.....I guess it depends on the patient/oncologist.  At first, my oncologist recommended a different drug/different regimen, but the side effects scared me too much, so she agreed to switch to this regimen.  I use Sloan Kettering Cancer Center in New York.  I keep telling myself that I must have faith in the doctors and their abilities. 

 Kim, much luck with your visit to Anderson.  Enjoy the warm weather in Houston. 

 Keep smiing everyone.. 

Kim, my oncologist also told me that white blood cell count is often not a problem on TCH and she doesn't prescribe something for it unless the count is low. Though I doubt that your oncologist is prescribing it to make more money - they have plenty of business. I suspect it is more because the TCH is relatively new and he is doing it because it is what he does with other chemos.

My onc said that if my white cell count was low she would prescribe Neupogen rather than Neulastin.  It is less strong and shorter acting - she said one Neulastin is about equivalent to 10 Neupogen. If my white cells are too low on this therapy, I'll need a shot of Neupogen once a day for three days and they will teach me to inject myself. She doesn't want to prescribe if it isn't needed or prescribe something too strong because the spleen can have problems if too many white blood cells are created. And the side effects of Neupogen are suppose to be less though similar too those of Neulastin. 

Cytoxan seems to be standard in the non-Herceptin breast cancer chemos. Carboplatin was what was used in the trial of TCH vs AC-TH so that is the one proven as part of that therapy. I don't know why they used it instead of Cytoxan but I prefer to stay with the one that has been shown effective in this combination. Cytoxan and Carboplatin perform a similar function. 

Taxotere, carboplatin, herceptin is in the NCCN guidelines, Taxotere, cytoxan and herceptin isn't. If I'm not in a clinical trial, I'd rather get the guideline treatment unless there is a good reason to go off protocol. That trial sounds interesting - especially since it is 4 cycles instead of 6. 

Hi Kim,

My diagnosis is Stage 2 Her2+++ ER/PR negative, grade 2.  As far as I know that is the diagnosis.  My tumor was removed in two parts first was 1.2cm and the after my mastectomy they found a 1.8cm tumor right next to where the first one was.  Neither one showed up on Mammo/sono/MRI.  Since the margins weren't wide/clear the oncologist is listing as a 3.0cm.

At first they recommended AC then TCH, but the AC scared me and I told her that I didn't want it.  She agreed to change the prescip. to  TCHx6 plus the remainder of the year on Herceptin.  I went for a second opinion and he agreed that the TCHx6 is good for me.  I go for my muga scan tomorrow and then presurgical testing for my port surgery which is scheduled for the 21st.  I need to have a port put in because the lymph node dissection left me with only one arm for chemo and the veins are not the greatest.  Port should take care of that issue.....smile.

Thanks for the information regarding Neulasta.  My dh is calling the oncologist today to question if I need to get this shot as scheduled or can we wait and see each month if I need it.  I went to Sloan Kettering because they are about as good as it gets here in New York, so I agree with you that I really have to trust that the team of oncologists here know what they are doing....even better than little old me....smile.  However, it is important to question them and in my case refuse the AC if I am not comfortable with the drug or the side effects.  My oncologist said if it were her, she would have the AC, but she understands completely why I am hesitant to have it in my situation.  Bottom line is that every circumstance/diagnosis is slightly different so as long as you are comfortable with your oncologist/hospital, no need to worry. 

When is your first treatment?  I agree that it sounds like we are going to have similar chemo.  It would be nice to share our experiences. 

I hope that you all find peace and relief from the anxiety that haunts us during this difficult time.

Much love,

Anne  

Hi Mary Ann,

Thank you so much for your advice.  I just heard back from Oncologist at Sloan Kettering and she said that they always give the neulasta shot after TCH.  She said that they wouldn't feel comfortable changing that.  I'm glad to hear that you came through this and are doing well.  It gives me great hope.

My son 12 years old, just said the most wonderful thing to me.  He said that he can't wait until early March because that is when the flowers start to pop their heads up from there winter sleep and that is when I will begin returning to normal too!

Much love,

Anne

Hi Anne,

Sorry you have to go through this but really for me and I know I was blessed the worst part was not having any energy because of the low blood counts. Even with the neulasta my white count would go really low and I had to have the shot once for the red blood count.  Didn't have to take any other medications. I was able to work through chemo only had to take off a couple of days the week I had tx's. Take Care.  We will all get through this.

Mary Anne

Just wanted to give Herceptin ladies HOPE.  I have been receiving weekly Herceptin treatment for over 8 years. Yes, the cancer has spread to my bones over the years and other chemo treatments have been added but I have continued the Herceptin.  For a year I also took Navelbine and it was not very nice to my body.  Stopped it. Found out I had kidney failure. I have that under  control by cutting out all red meat. Local onco gave me 6 months - 2nd opinion at Duke said I should have Taxol added to my treatment.  There goes my hair again!  But I'm alive like the EverReady Bunny.  I keep going and going.

I'd love to know if there is anyone else out there that has been on Herceptin for a long time.

Kim,

I wanted to let you know that I have done 2 rounds of TCH and have not had Neulasta.  They monitored the blood counts between rounds 1 and 2, but they never dipped low enough to be concerned.  In fact, they were all normal by the time round 2 came around.  I suspect they are still normal now, but i will find out next week when I go in for round 3.  

Katie 

Thank, Linda. Chemo is this morning, and I'll find out my blood counts then as well. My hair has been falling out for a week now, and I got a buzz cut which feels so much better. My head is cold though, the mornings are cool in Colorado. 

Hi all

Just got back from being away for a week ... had to be out of the house while the wood floors were redone so we packed up our 2 kitties and went to the beach. I get so much out of all your posts ... I am so happy to have found this site.

 Kim & Katie & Linda -- I asked my onc nurse about the Neulasta shots, because after round 2 and 3 my whites dipped way low.  She said they (where I go) don't normally order the shots unless really needed, as so many people experience the bone pain.  Instead, they put me on "restriction" ... want me to follow this really strict diet and avoid contact with people -- well, as much as is possible.  Would you believe on the no-no list is pepper?  Salt is ok, but no pepper.  More later on the restriction list if anyone is interested.

Linda & kimmysue -- I hope you love your port as much as I love mine.  I have mine in my chest.  The incision healed real fast and the numbing cream I use on it is great .. not even an ouchie when they stick me or remove the IV.

bluedasher -- I had to look up muga ... I got an echocardiogram.  Is it similar?

chelli -- I had nosebleeds too for the first couple weeks.  Ewww.  But they did pass, so I'm hoping no more of those!

I'm in the middle of round 3 now of TCH (mine is neoadjuvant).  A little breathlessness has set in, which is caused by low hemoglobin, my onc tells me.  There is a shot for that ... think they'll evaluate that when I get the chemo (baby "h" only) next Thurs.  I'd have to say the worst SEs for me are/were the terrible heartburn, the constipation(!), and the tiredness.  I'm using Prilosec OTC daily for the heartburn and add some Zantac OTC when it breaks through the Prilosec.  One of my onc nurses said it's OK to go on Prilosec indefinitely -- the label says not to exceed for 2 weeks, but we cancer patients are special.    For the constipation, wellll .... if you get it, try to take stool softener gelcaps daily but you may have to resort to the real laxatives.

Is anyone sleeping, like, 16 hours a day for a couple days past a big chemo?  Then having insomnia?  I'm got some sleeping pills the docs gave me but... 

Speaking of which, I think it's bedtime for me. 

Take care,

Gayle

Linda -- that's really smart.  I hate staying in, so I do go out but make sure my friends and co-worlers know I'm under the 'no touch' rule, and I use hand sanitizer frequently.  Bath & Body Works has scented mini-sized ones that friends have given me.

Hi all - I started TC(carbo)H on 9/18 and had my 2nd treatment on 10/9.  So, I'm close to an October start. :-) I will have six treatments, then start radiation. Of couse, the Herceptin will continue for a year.

ango74 - I had the same side-effects as you did for the first treatment (plus a yeast infection!), but the 2nd treatment was much easier. My only real side-effect was being exhausted - much more so than I was with the first. I slept 10-12 hours a night on days 3-5. And I could have slept more! I hope your 2nd treatment turns out to be easier too.

I don't know if it's a coincidence or not, but with my first Neulasta shot I definitely had some moderate bone pain and a headache that lasted a couple of days. That shot was given in my upper arm. The 2nd one I got in my stomach and only had very mild bone pain and no real headache to speak of. I'm going to continue with having the shot administerted to my stomach and see how that goes.

Best of luck to everyone with upcoming treatments. Hope your side-effects are minimal. 

Kim