TRIPLE POSITIVE GROUP
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hi gamzu,
I did not go though process but I did look into having my eggs frozen and met with doctor a couple times. I personally decided not to do it. A lot of it was timing - onc wanted me to start chemo right away so only had 14 days to do it (iirc it was a absoluteminimum of 10 days on hormones with blood work and ultrasound every other day and then collection is at least a day after that), plus it was a lot of money for something that wasn’t guaranteed/could fail at any point in process including implanting eggs/ivf later on. There are a lot of grants and funding available for both process and meds, but due to my timeline I just didn’t have the time to apply.
Also I guess some context might also help haha, I was diagnosed in March at age 34, and am currently single so wasn’t planning for family any time soon.
I did end up getting monthly lupron shots while on chemo on the suggestion of my oncologist. The lupron shuts down the ovaries so they’re less likely to be impacted by the chemo (kinda the same concept behind cold capping ). It will put you in medical menopause, I didn’t have it too bad with the hot flashes/hormone side effects, but the libido issues have been kind of a bummer. I’ve been off it for a month but have heard it can take at least 3 for your body to get back to normal.
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1982M-Thanks. The Young Patients board doesn't look very active?
morrigan_2575: I had a lumpectomy already and as the MRI results have come in, we've learned that this was indeed the only site of cancer and got clean margins. SNLB is next week, then chemo.
LGR239: Thanks for that description and your thought process is very similar to what I'm sifting through! I'll be 34 next week so it sounds like we're in the same range. My oncologist also will be using Lupron shots. The fertility specialist thought the best course of action would be to freeze eggs as an insurance policy because I will be over 35 by the time I can come off tamoxifen and I don't have a partner or firm plans of anything so I could wind up being considerably older by the time I decide to have children, if I decide to at all. She certainly didn't say it wouldn't be possible naturally, and I guess the bloodwork and initial scan I'll be doing tomorrow will give more information about my overall fertility in general. It is very expensive and you're right about the percentages. I guess I'll see what they say tomorrow.
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@gamzu - Awesome! I didn't see the surgery in your bio so I wasn't sure. Didn't want you to wait too long since time is of the essence.
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Sorry Gamzu it’s not to active. I saw there’s a fertility board too but maybe there just as inactive? Hopefully it goes smoothly for you. Never an easy decision.
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It definitely isn't. I had an initial scan this morning and while we're still waiting on the bloodwork, it seems like I may have preexisting diminished ovarian reserve, before chemo even starts. The number of follicles seen was unusually low. This means a low number of eggs to freeze in a single cycle, and a single cycle is all we have time for. And as LGR239 noted, the odds with egg freezing are already not great compared to embryo freezing. I felt like the doctor was not being honest with me and was glossing over the realistic odds of success with this down the road. Maybe she figured that there was no point in discouraging a cancer patient since the situation is what it is and this is the option I have. My parents are thankfully helping with costs so that is a lesser consideration for me but it's seeming like a lot of stress and hassle for what will probably end up ultimately being a fruitless exercise. I guess what do I have to lose besides some time and annoyance in the short-term, but I'm not totally sold on this.
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I started Anastrazole the week I finished my last Herceptin.
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I've been given a chemo start date of Thursday 10/21. I picked Thursdays in hope that the weekend days would be the worst. I still don't know if it will be TCHP or Taxol and won't know until the pathology from the SNLB, which is this Thursday, comes back. But feeling very scared right now and that this has suddenly gotten way more real.
In the meantime, the MRI biopsy site is still open and a translucent gelatinous mass unmistakably containing the biopsy clip emerged from it last night, which was both gross and fascinating. I think it was part of the clot or a platelet plug or something. No redness, no pain, no swelling, no pus, and it does seem to be slowly closing and healing. I have my dye injection for the SNLB Wednesday afternoon at the same imaging place so they'll get a close look at it and can tell me if there's anything to worry about, but I don't think so.
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So happy you got a date finally! I felt really overwhelmed too just before chemotherapy, but two weeks into the weekly taxol it’s a bit of a routine. Side effects haven’t been pleasant but so far manageable. I feel like the wait to get going really is the absolute worst.
Your clip being pushed out was what happened to a stitch on me. My lumpectomy kept oozing this jelly and finally a gross stitch made an appearance. I now have a wide part of my scar, which matters none since they are going back in anyways.
Here’s hoping SNLB results get here quick and they are unaventful!
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gamzu - I also had infusions on Thursdays, which was incidental as it was the one day my MO was at the facility closest to my house. There are three offices locally and he rotates to all three on different days of the week. I was out on FMLA during chemo so didn't have to worry about feeling well enough to return to work, but it was nice that my DH was home on the weekends following infusion. I had TCH so had three weeks between infusions, I pretty much split that time in half - first 10 days stayed close to home because of fairly mild digestive upset, second 10 days felt good and did pretty normal stuff.
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Hang in there, Gamzu, and big virtual hugs to you. That upcoming first chemo - aside from the unknown, waiting for biopsy results, and then known, OMG I have cancer phases - was the absolute scariest for me. I lost it in the waiting room just telling the receptionist I was there for infusion, but I do my 6th taxol/herceptin tomorrow. So far, it's not as bad as I expected. The lack of appetite and my own strange reluctance to drink water are the things that are hitting me the hardest and making it bad, I think. I'm 5'6" and under 120 lbs now, and it's leaving me feeling weak and shriveled, but my understanding is that most people gain rather than lose weight with this protocol, so this is probably just a weird me-thing. If not: eat like a pig on the days where the premeds are still in your system, and remind yourself to drink water. I have to set an alarm at this point. Icing my hands - my fingers got frostbitten a lot as a kid, and icing hands is physically painful and therefore hard for me, but it's worth it. Starting and stopping chemo due to reactions is the other hard thing. Once that taxol starts going in, I just want it to finish. My advice there: let them give you whatever premeds you need. It keeps them from having to stop, call docs, check vitals, restart, and delay the whole thing. I tried to go light on the premeds for a while, and it just prolonged the agony. I'm going to just accept the benadryl tomorrow, much as I dislike how groggy it makes me feel. My head hair is starting to shed more thickly than previously, but again, I'm half way through as of tomorrow. This was to be expected. The neuropathy so far is not too bad, and my nails are still growing and still fully attached to my fingers and toes.
I'm hoping for taxol for you, not the heavier duty TCHP, but whichever it is, we will be here for you, and we will all get through it together.
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AMG2: I'm down 2lbs (not a huge difference) after 2 treatments- also 5'6lbs. 120lbs is pretty small. Have you lost more then 5% of your body weight or were your always petite? I think if you lose more then 5% they recommend dietician support. That being said, I saw one at the start and she wasn't helpful at all.
I thought I would balloon! I'm like you- my appetite is pretty suppressed. I consciously have to eat and drink. -
AMG2 and 1982M,
I started to hate drinking water a week after my first chemo. I ended up drinking a lot of soup and other liquids instead. I definitely lost weight on Taxol as it made things taste funny. Then, I started my AI (Aromasin) + ovulation suppression (Zoladex), and the weight came back and more some. If it's not one thing, it's another!
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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.
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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.
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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!
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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.
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@gamzu - i did TCHP and my infusion was on Wednesday, my bad days were Saturday-Tuesday.
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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.
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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!
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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.
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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.
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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!
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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.
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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.
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good news.
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Glad to hear negative nodes Gamzu
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Glad your surgery is completed Gamzu710 and no nodes are involved. Take care.
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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.
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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.
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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!
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