TRIPLE POSITIVE GROUP
Comments
-
Oh dear, I don't want to hear about weight loss! I'm 5'4" and barely over 100 lbs. and have been borderline or mildly underweight pretty much my whole life. My appetite is easily ruined and it takes very little to put me off various foods. No one has remarked on it so far except to note that my doses will be low, but my biggest fear since this journey started was that chemo will make me waste away or I will end up on an NG tube or something. I have no pounds to spare. I hope I can fight through it or that it won't be as bad as I'm fearing.
0 -
gamzu710 - eat as much protein as you can. Try lemonade or flavored seltzer water if regular water isn't your thing. It's important to stay hydrated.
0 -
gamzu- not everyone respond the same! I think steroids for many increase their appetite. I make conscious decisions to make myself eat. If your not hungry you might need to push yourself a wee bit. Trial and error!
0 -
Thanks, guys! I managed to stab myself 4 times with a needle before dinner this evening for my ovarian stimulation treatments so I can summon wells of willpower from somewhere, I'm just going to have to try harder with food. We do what we have to, don't we? Somehow.
Covid PCR just came back negative so I guess all systems go for SNLB. Going tomorrow afternoon to be injected with dye, imagining it will be quite painful, but we do what we have to do and get through it somehow.
0 -
@gamzu - i did TCHP and my infusion was on Wednesday, my bad days were Saturday-Tuesday.
0 -
I think for many who gain weight it doesn't come from actually overeating, it is fluid. You have to eat about 3,500 calories and not burn it off to gain a pound. I know I definitely did not do that, yet I gained weight and felt puffy - it was steroid induced fluid over the months of TCH. If you are underweight, or at a point where it could be dangerous to lose weight, it may be worth consulting a nutritionist if you start to lose. I have read here not to try to eat your favorite foods while on chemo because they might not be your favorite foods afterward - I did not have a strong food association with chemo - I just ate what I could immediately after infusions - soups and yogurt/melon and relatively bland foods that didn't upset my stomach in the first 10 days, then tried to eat protein in the second 10 days even though it tasted a bit like cardboard. I just felt like it was a temporary situation I had to get through the best I could. I did need a diuretic to lose the fluid - my MO put me on a mild one that did not have a kidney impact - and I stayed on it for a little under a year, then was able to stop.
gamzu - did anyone give you any EMLA numbing cream to put on prior to the SNB? I did not have any but the discomfort from the injections was brief - hope the same for you.
0 -
No EMLA but it was okay. I just got back and it was sort of like being stung by a bee for 10 seconds, the difference being a bee sting continues to hurt once the bee has left and this doesn't. No big deal. The same radiologist who did my biopsy did the injection and wanted to examine the wound from last time; she was pleased with the healing so I'm feeling reassured.
My 34th birthday is tomorrow and there's something paradoxical about having to state your birthdate over and over again for ID purposes in a doctor's office and getting a "Oh, happy early birthday!" while you're there having your cancer staged. Four times today and I'm assuming as many or more tomorrow. Happy birthday, here's some surgery to see if your cancer is spreading all over!
0 -
gamzu - that was my experience as well - my injections (bi-lateral) were done in pre-op the day of my BMX. Glad to hear that the doc looked at your wound and if feeling good about it. I hesitate to say it - but I will, happy early birthday! Good luck tomorrow - in your pocket for an uneventful birthday! I feel ya - I was diagnosed on 9/27, and hit with a barrage of Pinktober crap while in the expanded diagnostic phase of imaging and genetic testing, with surgery ultimately on Nov. 1 - mixed in there was my birthday also (it is this coming Sat.) so I had a few of those same experiences.
0 -
Just got home from surgery. Feeling fine so far. They took 2 nodes. Surgeon said they looked fine and normal but obviously that means nothing until the pathologist slices them up. I have a beautiful shade of blue around the middle of my breast and have been told to expect blue poop and pee for the next bit, which I am interested to see.
Terrified about the pathology results. My initial pathology was negative for lymphovascular invasion but I know this result could change everything and then we'd have to start looking to see if I'm stage IV. Unlikely but not impossible. Original tumor was 6mm and Grade 2 but HER2+ scares me and really, if you have two cells, one can spread, right? Again unlikely, but not impossible. Going from ADH to IDC was low odds already so I'm not banking on anything and trying to brace myself.
0 -
Gamzu, glad your home and done with surgery! One thing about the sentinel node biopsy I didn’t expect is at one point the area around felt like someone rubbed it with a Brillo pad or it had razor rash. It’s normal and just part of nerve healing. It was better after 4-6 weeks (can’t remember when it all went away… I think closer to 4 weeks).
It’s totally fair to be afraid/nervous and anxious about results. Waiting for my node status was hard. Hope you get results soon!
0 -
Watching the blue dye fade has been pretty interesting. My breast was bright blue for the first part of the day and then seemed to start to lighten mid-afternoon and now it's basically completely gone. Still peeing blue but that is lightening as well. I took some Miralax to combat the inevitable effects of whatever they put in those anesthesia IVs so tomorrow could be interesting on that front as well.
1982M--Thanks for the tip about the razor burn feeling. So far it's just tight and a little achy (have not even taken Tylenol) but I won't freak out if that happens having heard it from you! I am surprised at how small the incision is. Honestly, the worst-looking thing on me right now is the huge belly bruise I somehow gave myself with a Menopur shot the day before yesterday; it looks ugly enough that I was half-expecting to pulled aside for a quiet "is someone at home hitting you" interrogation at surgery today. My breast looks fine.
0 -
Pathology report is in--one sentinel lymph node removed, negative for tumor. Taxol + Herceptin it is. Though in looking at my oncology patient portal, I think it's going to be Kanjinti instead of Herceptin.
0 -
good news.
0 -
Glad to hear negative nodes Gamzu
0 -
Glad your surgery is completed Gamzu710 and no nodes are involved. Take care.
0 -
Thanks, all. I feel like I just fill up this thread with questions. I have an echocardiogram tomorrow in preparation for Herceptin. No one has told me anything about it. From what I am reading, it sounds like no big deal? You just lay there and they ultrasound your heart? Do they inject any contrast? How long does it take?
My Zoom chemo class with the nurse is tomorrow afternoon. I need to sit tonight and write a list of questions.
0 -
Hi Gamzu, not triple pos, but I read up on here in case anything new for HER2 comes up. The heart scan is likely an ultrasound/Echo to get your baselines before starting treatment. It's exactly as you think. You lie there and they move the tool around. They may ask you to hold your breath sometimes to get better pictures.
0 -
Hi Gamzu, ask away, it is the main reason I am in these threads - to ask questions I still have, and to give support to people going through what I've already been through as best I can, because this whole process scared me horribly and was very hard to step into without the support of these threads.
The echo is no big deal: no contrast, just lie there, move around when asked to, and get a baseline of your cardiac ejection fraction, as this is the thing herceptin, or the monoclonals against her2 have the potential to adversely affect - temporarily is my understanding. I can't remember exactly how long it took, but it was a limited, not a full echo, and I don't think it was more than 30 min. I've got my 3 month, check and see what happened echo on Nov 10. I'm really glad your node was negative; that is great news!
0 -
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.
0 -
@gamzu - they don't inject anything, you have to lay on your side and they put some leads on you and they just use a wand to image your heart. You can actually watch on the screen if it's titled in the right direction.
0 -
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.
0 -
For me the echo felt like the least invasive test. Just a ultrasound of the heart. I had to move positions and the person doing it pressed on my lumpectomy site (left sided breast cancer) and that was uncomfortable, but other then that it was pretty neutral. I thought it was neat to see the images of my heart.
0 -
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.
0 -
Echo was indeed a piece of cake as you all told me it would be. The tech did not explain anything so I could only figure out when she was marking the atria and ventricles. Watching my tricuspid and mitral valves rhythmically snap open and closed was pretty cool. She did it with various colors and recordings of my heart sounds and I had to hold my breath a few times while she held the transducer right below my sternum and right under my thyroid. Not sure what that was about. I've been told the results will be sent to my oncologist's office and I should expect to hear from them, not the cardiologist. Gonna assume it was fine, I guess?
0 -
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.
0 -
@gamzu - I'm sorry your tech wasn't talkative, all of mine would start explaining what was on the screen when they saw me watching.
If I remember correctly the check up by the throat is so they can "look down" on the heart. I think it's just a different view.
0 -
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.
0 -
I was glad I had a port but it certainly is yours and MO's personal preference. If you plan on a wig, shop for it now so the sales person can see your color and style. I missed my eyebrows more than my hair (used scarves and hats and actually thought I looked good bald). It's pricy, but if you can swing it, consider permanent make-up. My other problem with Taxol was the constipation/diaherra cycle. I found if I took a laxative the day before chemo, I did better.
0 -
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.
0 -
Gazmu- my tech wasn't talkative at all. I was really interested in what was going on but they wouldn't say a word. Literally- nothing. All I learnt was my EF was between 60-65 from one of the nurses before my infusion. I am happy and unhappy to have the port. They placed it on my arm so the scar is super hidden and it's easier to ice. I'm still healing and overall annoyed at more healing. It was so tender yesterday when they poked it for chemo. Hopefully it will be fully healed next time. I think I'm more annoyed they didn't get it in before chemo started and it could have healed. Oh well. If I didn't have petite veins to start with I prob would have opted out too.
I'm wondering if any triple positive women were offered a nipple and skin sparing mastectomy?
Anyways- thought I'd see if anyone here had a nipple sparing mastectomy or insight into if Her2+ makes it a no go????? Or any info to share 😊0
