Starting Chemo December 2015

wow Angtee, what a scary story. Sorry you had to go through that. And glad you are ok!!

I know some of you have talked about skin issues. By no means am I trying to sell anyone anything but I have been selling and using Nerium skincare for the last 3 years. I have kept using it during all this and my skin has not given me any issues.

Angtee15~ Sorry to hear you ended up in the ER with the bilateral pulmonary embolisms. It is very scary to know something is wrong with your body and not feel that you are getting "heard" at your doctor. Wondering what if they are having you continue with blood thinners at home?

Less than 2 weeks after my chemo port implant surgery, I ended up with a blood clot in my subclavian superior vena cava from the catheter running from my chemo port in my left arm into my chest. I have to self inject Lovenox subcutaneous into my belly every day. I've been using my EMLA cream with a small Tegaderm patch to help numb the ever changing location i inject.

Anyone else dealing with blood clots?

I've got chemo 3 on Thursday and although happy i'm getting closer to being done with the 6, I can't help but be apprehensive of side effects from this round. #2 was easier than #3, but i started chemo anemic so i've been really run down & have those palpitations daily. I'll talk to my Oncologist about it in more detail when i see her before chemo. Was it the shortness of breath alone that sent you to the ER?

Wentisa, I had itchy bumps on the side of my fingers. It doesn't seems like dry skin. It was so itchy that I scratched and scratched to the point my thumb and index finger are swollen. My PA checked it and gave me steroid packx5 days.

wenrisa and tesla - could be hand-foot syndrome (hfs). I'm also having itching burning flaky skin on one of my pinky toes. Check here for more info:

http://www.breastcancer.org/treatment/side_effects...

I feel like I am coming apart at the seams. Mentally, physically, emotionally...I can't wait until this is OVER!

Redrock - I asked my second opinion MO at MSK this question because I had a lowish oncotype score (17)and she told me she would not advise skipping it. However, I was node positive. A, C & T all work in different ways. My take on it is to hit it hard, but again, I was node positive. This a definitely a discussion for your MO.

Yes, I had a lumpectomy first. My tumor was 1.3cm, not the same as your situation, especially since mine took it upon itself to relocate.

how'd it relocate? They wouldn't do mine even BMX because it was too large and close to the chest wall. Not an issue anymore

redrock, your approach makes sense to me. Let us know what your MO says

Hi everyone - I met with the surgeon today. This is my "halfway through chemo so what is the plan" appt. I did have a lumpectomy prior to the chemo I am getting below, but we were not 100% sure if we would do BMX. Basically he told me that my risk of recurrence is not really significantly reduced by adding on the BMX. For my situation (clear margins/nodes at lumpectomy, brca negative, triple positive on the hormone receptors) he said the biggest issue with recurrence is the Her2+ and not my remaining breasts. So for the Her2+ I am getting the herceptin for a year. He said that, coupled with going on tamoxifen (or other hormone therapy) basically leaves my recurrence risk somewhere around 1% per year. He said if I wanted to do BMX he would, but he didn't think it would help my #s with any significance.

So that being said, after chemo I still need to complete Radiation, then do hormones. I really wonder what you all think of this. I feel that I go to a great breast center - all they do is breast cancer - that's it. And he's been doing it forever - over 20 years when it wasn't even really so mainstream. But I know you all obviously are getting advice from your medical teams and I just wondered if this jived with what you're hearing. Twirp, Tesla, and Birdie you are all triple positive too, right? (did I miss anyone)....I would love any advice that you may have been given.

Part of me always felt like I would do the bmx, but then the closer I got to it, the more scared of the recovery I was. And off topic but I was born with a ortho defect and had countless major surgeries as a kid. I've had my tonsils out, I've had 2 lumpectomies (2011, 2015), and the port placement. I am kinda over it, you know?!?

Sammy3 - I am similar to you just an earlier stage. My BS strongly recommended the lumpectomy route for me given the marginal difference in potential recurrence vs. BMX. Ultimately the choice was mine to make of course. I feel very comfortable that the treatment plan I am on is addressing every aspect of the cancer that was removed. The thought of 10 years on pills is causing me serious anxiety for some reason but I will deal with that after radiation.

Cyndi

Sammie, I am wondering how your Dr gives a 1% recurrence. I think my doc said while analyzing my Oncotype score if I did the chemo it would take mine down to 10-15%. Then the other day I was reading about how Holley Kitchen died of metastatic breast cancer and the stats there said 20-30% of all early stage breast cancers will metastasize. I feel like everywhere you read you get different stats.

I will tell you one of the main reasons I decided to do the BMX is because of the radiation. The radiation and long term possible side effects worried me. Plus the fact of having to do it every day for 5-6 weeks. The other factor was I had things removed from both breasts in the past and I knew I would worry leaving my dense breast tissue there. I don't want to influence you in any way. I think it's a very personal decision. I just wanted to share.

Sugarandspice, hoping that things look up for you. The hair will grow back! :

One more I forgot earlier tip for those with bottom issues- the squatty potty. might sound silly, but it does really help and i figure anything that makes that process easier & less painful is welcomed. http://www.squattypotty.com

I too am HER2+ and am planning on HERCEPTIN after surgery. I have really heard it has been a miracle drug for many people. I'm ER- & PR-, so I think i'll only have the Herceptin. I hear that my hair will start to grow back on just the Herceptin. My *surgeon (and researcher for 30+ years) was so positive regarding my diagnosis and explained that in 2015 (when i was diagnosed) HER2+ breast cancer can be successfully treated better than ever before, due to Herceptin & Perjeta (when also appropriate). *https://www.cedars-sinai.edu/About-Us/News/News-Re...

Having night before anxiety for chemo 3 tomorrow. Not feeling great today and just really nervous for tomorrow. Upset tummy, anemia weirdness issues & basically just a bit terrified for some reason.

i too am nervous about the radiation. To be honest i don't yet know how how much they will want to do on me. My IDC tumor was 2.1cm but after chemo 1 both my Surgeon and MO said that it felt smaller in their manual exams of my breast. My guess is that depending on how small it gets that will affect how much.. i need to find out more as there may just be a standard protocol that i haven't learned yet. Or remembered from the earlier dr.'s visits when i was still in such shock.

With the discussion of Oncotype scores, i need to revisit my genetic testing results. I negative for any genetic markers but don't remember the scoring. Sometimes it all gets so overwhelming & i've just been trying to get through chemo. But the reminds i need to look at my results again.

I hope everyone is feeling better and has an easier time with their SE going forward. I'm going to look into the palliative care aspect as well.

Thank you to all of you for being so wonderful. I wish i had joined in sooner but was trudging through it on my own, boyfriend and some friends support but i still often felt alone and sad. But got overwhelmed reading everything online early- would just get enough of "cancer" for the day. However, i missed out earlier on being able to connect with others going through this at the same time. Big hugs.

Chinookmom - You shouldn't have an oncotype score with your hormone receptor status.