TRIPLE POSITIVE GROUP

Oh, one more thing on the sentinel: my sentinel node biopsy site has been completely numb until just this week, and my surgery was Aug 3. Sensation is finally starting to return. I also had what seemed like a pocket of fluid that would accumulate during the day, then drain overnight and be gone by the next morning, and that went on for about a month, maybe a month and a half. That seems to be fully resolved now. Just thought I should give you a heads up that this is another possible result of the biopsy. Probably everyone's experience is a little different.

Excellent, laying there and doing nothing while they wave an ultrasound wand over my chest, I can do. Watching on the screen might be interesting. My mother, grandmother, and at least one aunt have mitral valve prolapse so it's crossed my mind that there could be an incidental finding.

An echo every 3 months is standard for Herceptin as heart problems is an infrequent but possible SE. Just one more important hassle as far as I was concerned. My recollection is similar to others. Lay on a table and breathe.

gamzu - the ECHO (or MUGA for some) is two things - a baseline against which to compare subsequent exams, and a check initially to make sure your heart is healthy enough for Herceptin. In all of my time here I have never heard of anyone who was not able to initially proceed with HErceptin based on the results of their initial ECHO. What your oncologist will watch for is a 10 point drop in LVEF since last scan, or a 10% decrease in function. Either of those results is enough to cause a Herceptin pause, potentially a cardiologist work up, and possibly protective meds if/when Herceptin is restarted. I have seen a handful of people have to stop Herceptin due to a drop. It is normal to see a few points decrease - I definitely had that - this type of situation is reversible at the end of Herceptin, and most oncologists expect to see it. Also important to bear in mind that the measurements in an ECHO are subjective, i.e. - subject to human error or minute discrepancy because it is a human placing the cursor for measurement with a mouse - that can result in a different score by a few points depending on who does the exam.

I wished she had been! I was a biology major in college and thought about medical school and like having this stuff shown and explained to me in detail. My oncologist immediately pegged me and hauled out the big binders with the literature. Oh, well. This won't be the first echo rodeo so maybe next time I'll push more.

I had my "chemo class" this afternoon and the theme seemed to be "your hair will fall out and you will be tired but most of this stuff probably won't happen to you." Here's hoping. They do an icing protocol with Taxol so I won't have to manage that myself, which is good. The nurse immediately identified my starting weight as an area for close monitoring and had some suggestions about using timers and being more mindful about my eating that I will try to follow. We are going to try to get through all this without a port. Theoretically I'm happy about that but I'm not sure how realistic it is. We'll see. My egg retrieval is on Thursday and the blood draws for that have bruised up the veins in both elbows already.

my friend did 3 AC and 12 Taxol without a port. She had one put in but it got infected and had to be removed right after her first infusion.

Cool that your place does and icing protocol. Of the 3 places I looked at, none provided that service, not even ice chips. I had to bring a cooler with everything.

1982M - I had a skin and nipple sparing bi-lateral mastectomy in 2010, with an almost 3cm tumor, so not low risk. I had surgery first, then chemo as was the much more common practice at that time since Perjeta - which brought the advent of neoadjuvent chemo for tumors over 2cm to recommended order - was not yet used for early stage patients. My natural breasts were in the large B/small C range with no ptosis, and my plastic surgeon indicated at the time that you definitely needed to be a candidate for this type of surgery. Have you had a plastic surgery consult at this point? My understanding is that for nipple sparing to be used you generally need to be on the smaller breasted side to allow the nipple to be in the right place on the breast when the reconstruction is complete. There are some plastic surgeons that remove, or move, the nipple but those surgeons are potentially a little harder to find. Most make an incision in the IMF, place an expander or go direct to implant, and the nipple is close to the original position it was in prior to surgery. If you are larger breasted and wanting to go smaller the nipple will not end up on the front of the breast unless it is moved. Are you planning to reduce the other side?

1982M - There are a number of members on this site with breast cancer who have had skin/nipple sparing surgeries, or do you mean the particular order you are considering, or do you mean in your location?

I was initially offered a lumpectomy - that is another thing that made me a candidate for this surgery - my tumor was well away from the nipple. That surgery would have been a disaster for me - I had a bunch of DCIS with cancerization of the lobules in addition to the IDC in the right breast, and a bunch of ALH and ADH in the left breast. Unbeknownst to anyone - even after mammo (which detected nothing), ultrasound which only saw the IDC, and MRI - I had positive nodes that met the size threshold and should have been seen prior to any surgery. I do not image well, and that is what made me opt for BMX over lumpectomy. In addition to having ALND surgery 5 weeks after my BMX, I have had a number of reconstruction issues that made me realize that if I had it to do over again, personally I would have opted for traditional mastectomy incisions, no nipple sparing, and 3D tattoos despite my initial result being beautiful. I do not have nipples now because of the complications I experienced. It is also important to note that almost everyone has no feeling in the nipple after this surgery - it becomes a decoration, and some experience either extreme flattening after the NAC is cored out, or the opposite and they always have to wear a bra. If you have a natural nipple and a relocated one they may not have symmetry or look alike. I am definitely not saying that SS/NS surgery is wrong for everyone, or anyone - and certainly the vast majority do not experience the complications I did - but I thought I should be 100% forthcoming with you. There are members, and people I know locally, who had a great result and look amazing. Unfortunately, this just ended up being the wrong surgery in hindsight for me due to a perfect storm of exceedingly thorough mastectomy, thin pectoral muscles, and thin skin.

Hi Ladies: I am writing for a friend of mine who is triple positive. She started Herceptin injections every 3 weeks on her leg and it is very painful for her. She also develops a huge bruises on the injection site. Do you have any recommendations on what she can use to make this injection less painful?

sorry, mine was an infusion.

i received my last few Herceptins as an injection. It’s a drug called Hylecta. The injection was about 3 minutes but it might feel like 10! It really does hurt. There is a material bound to the Herceptin that opens up your tissues to receive the drug and it feels like a really long bee sting while you get the injection. My nurses are experimented with using smaller needles and with where they did the injection-I think they learned that the side of thigh hurt less than the top. Good luck to your friend!

Redkitty815, thank you so much! I will tell her about the side of the thigh since she had hers on top.

My neuropathy resolved very quickly after I finished Taxol.

Good luck today gamzu!

I found my first chemo the most difficult mentally and physically, but since then each of them seem to get easier! I just had round 5 of taxol and have had two rounds or Herceptin.

The thought of a transfusion reaction is scary, especially since your starting chemo and that all seems overwhelming too. Only 1% of people have an allergic reaction and 30% have what’s called a transfusion reaction- however, with the premeds it’s less! I was really nervous about it too the first couple of times- but so far nothing. The fast speed they run it now doesn’t bug me either so I’m happy.

The weekly taxol group had lots of info too if you pop in there!

Taxol #1 in the books. It was mostly long, boring, and straightforward except for the waves of burning and cramping in my arm that started as soon as the Taxol infusion went in, followed pretty quickly by a line of red splotches and bumps traveling up my arm along the general vein line.

Things you don't want to hear during your first session from an oncology nurse: "Hmm, I don't like the look of that. And it's already spread all the way up there?" And then the other nurse comes over for a look and goes, "Oh, wow." I did not have any other symptoms, no itching, no distress. She stopped the infusion and put an IV in my other arm to see if that vein would handle it better and the exact same thing happened. But then the other side began to fade and they decided to put in an order for a port placement but to keep going with this infusion with close monitoring unless it got worse. I was able to complete the Taxol successfully at the regular rate but the nurses said it was a mild hypersensitivity reaction and that my veins are too small and don't like the Taxol, so a port should be put in both for my convenience and because the veins won't last 12 weeks otherwise. I'm extremely fair-skinned so even the mildest reactions are very obvious to see.

It's so hard to figure out what's normal. My whole hand and forearm with the IV felt really cold and were noticeably chilled compared to my other arm all morning and I asked to make sure there wasn't IV infiltration or extravasion or whatever and was told it was normal. So when the Taxol infusion was pretty uncomfortable I figured that was normal too, and I wasn't even sure about the spreading blotches. I'm used to my own extremely pale skin and blotches routinely appear and disappear for no apparent reason. I got a rash all over my torso with the second and third Moderna doses and it was a nothingburger. But I've been given clear instructions to watch for any further developing rashes and call immediately if they occur, so I'll follow orders.