TRIPLE POSITIVE GROUP
Comments
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Yes, taxol does a number on hair - everywhere. It seems to me it was about 3 weeks. I liked myself bald but REALLY missed my eyebrows. Wish I'd gotten them tattooed on before I started. Permanent make-up isn't cheap but for me would have been worth it. Hair pretty much came back but I have a permanent bald spot from the AI's. I have a great collection of hats though and wear them always.
Great news about the new drug for TP ladies!
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Just a <belated> comment on Latisse. I had used some of those conditioner-type things several years ago and I know they worked--my sister commented that my eyelashes looked longer!! I bopped around different brands, but did not think they were working as well over time. Last time I saw my SIL she had really great looking lashes and told she told me she was using Latisse. I was going to just do the online thing, but was cringing at the $$. Next time I saw my MO, I asked her about it. She had never heard of it, but she looked it up and said sure she'd write me a prescription for it. With that and GoodRx, it cost about $30. I'm about six weeks in and think I am starting to see results. Keep in mind they say it takes 16 weeks to get the full benefit. (And my MO and her nurse want me to let them know how it's going at my next check-up!)
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Hello Everyone!
Looking to talk some things through and get a few perspectives. I was diagnosed IDC Grade 3, Triple Positive way back on July 29th, 2021. Started the process of meeting with doctors, scheduling surgery and oncology plans and got everything set up to start the end of September. (Which was a little unsettling because of the wait, but was reassured that I still had very good prognosis and there was no evidence of lymph node involvement and the tumor was on the smaller size ~ less than 2 cm.) Unfortunately, insurances became an issue and I have to start the process all over with different doctors. This has pushed the surgery date back to Nov. 2nd. (If you are counting, like I am, that's most 99 days from diagnosis to treatment). The original plan was lumpectomy followed by 12 weeks of chemo once a weeks and then 40 weeks every three weeks.
What I am mulling around in my head... the longer I do nothing, the more it grows and has the chance to spread. Potentially changing my outcome. The original oncologist didn't want to do neoadjuvant treatment for fear of over treating and prognosis was good and the tumor was small (He staged it a 1a)
Meeting with the new oncologist, the possibility of doing treatment prior to surgery may be an option. Is that something you would consider?
I know chemo is not fun but waiting another month + before I do anything isn't very appealing either. Thoughts?
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Sarahe,
I would totally take the chance to do neoadjuvant treatment. If your cancer doesn't respond well to chemo, you will know, and you will be able to take action -there are very effective treatments for pts with residual disease after chemo, hopefully you won't be one of them, but you never know. And indeed, you cut the wait. Total win. I don't see any downsides.
LaughingGull
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Thanks for all the answers. I had read a post about permanent makeup tattoo and for my eyebrows and eyeliner done before hand. I absolutely love it, and I'm a simple lady.
I start chemo tomorrow and am now prepared for hair loss.Any suggestions on what week to shave my head?
Sarahe, I'm so sorry for the mess you have been experiencing. I would def ask your oncologist if you could start chemotherapy if it would make the processes quicker. See what they say! Good luck
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Has anyone had a lumpectomy with radiation on breast 20+ year later after having radiation from a prior breast cancer. I was told by 3 doctors that it was “possible” and more recently from a new doctor definitively not. Also if you are going to MDA do you have recommendations for doctors? If it’s not appropriate to list if you can please private message me. Looking for a doctor that takes the time to listen to patients wishes and not just a number. Thank you!
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i haven't had experience burx I actually asked my RO about that and, he said it would be possible to do Radiation on the same Boob twice, if necessary. Something about the new technique being
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Ingerp - are you using the latisse on your eyebrows or only your lashes? Mine is supposed to deliver to the pharmacy on Sunday. They keep sending the rx back when they try to run it through my insurance and it's not approved. I think I have finally convinced them that I'm good for the $$, lol. I'll also use the good RX coupon (onc's office clued me into this) and it will be a little over $30.
Magonmac - I had Dr. Perkins for radiation at MDA after rejecting an RO at Mayo who just couldn't answer my questions to my satisfaction. Dr. Perkins is up on his research so if you're on the fence about rads and are getting conflicting information, I'd go see him. He was able to walk me through all the research studies that led up to the current recommendations for women in my situation (mastectomy with 3+ positive nodes after chemo). He's also very pleasant and may be a super genius. I still wasn't happy about doing rads after a BMX and ALND but at least I know for sure that it was indicated and not just something that had been done since the olden days and nobody has done a de-escalation study to see if it's really necessary (I have no idea if what I just wrote made any sense, feel free to ask for clarification).
To all the new ladies asking for advice - I apologize that I can't offer you guys more advice or encouragement but I'm getting to the point where I'm so far out of treatment that I don't think I even remember things accurately anymore.
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Has anyone ever had a biopsy clip really close to the skin and did it bother you? I had my final MRI-guided biopsy on the third site this morning and it was very close to the skin, so close that when they placed the clip, it somehow punctured through the nearby skin, so I ended up with two holes instead of one. This created a puddle of blood and the radiologist had to hold pressure very hard for like 10 minutes. The clip slid back in on its own and was in place when I had the post-biopsy mammo but the radiologist said it was so close to the skin that it could be irritating, and I should maybe have the surgeon remove it later. Has anyone had that and if so, how significant an irritant was it?
I guess if the spot comes back DCIS then it'll be taken out in another lumpectomy anyway, but ugh. The radiologist also said the site will "probably" scab over and keep the clip in, which I take to mean there's a chance it might fall out. I didn't even know that could happen. There has already been way more bleeding from this biopsy than from the last one which was on both sides. The poor mammogram tech had to get out more steri strips and wipes.
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Oh my lord, Gamzu, I feel like you've been through the ringer a few times recently, and I'm so sorry about the biopsy clip. No, have not had that - not even remotely, but for me, the aftermath of my relatively simple biopsy was, I swear, more painful than aftermath of the lumpectomy and lymph node removal, and I think it's because my body just didn't like the clip. I think it was 6 weeks between biopsy and surgery for me, and the biopsy was twingey and painful the entire time. I was quite surprised at how much easier the surgical recovery was.
Will you be meeting with your SO at any point? If it were me, I think I'd want to ask the surgeon. I'm sorry, I wish I had better advice, but all I can offer is empathy. Hang in there.
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Yes, this was the last step before the long-awaited lymph node biopsy so I will see my surgeon soon. Good idea to ask if she has experience with this! I've never heard of such a thing or read about it on here but she's been around the block so maybe she's seen it before.
I don't know if I've been through the wringer this early in my journey compared to most other women on here, but every interaction I have with the MRI place seems cursed! The biopsy site is still oozing a bit 3 hours after the procedure, though very, very slowly and I think it should stop soon. I hope. Otherwise today will get even more annoying.
I hear you on the frustration and pain of the small things! Being stabbed with a bunch of needles this morning was meh, but being squeezed with gauze afterward was so painful. It just went on and on without letup, like a mammo gone rogue.
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I’m really sorry to hear that gamzu. That does not sound fun! I hope it goes a bit smoother for you from now on! Ugh.
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There is a lovely hole in my breast. I've just had a shower and seen under the steri strip, which doesn't seem to have adhered properly due to blood collecting on it, and it looks like my breast has its own innie belly button near the nipple, complete with a bit of shower water collected in it. It's about 2mm wide and 3mm deep. It doesn't hurt, isn't bleeding, and doesn't look infected but I have no clue how this is going to close or what kind of stuff might get in there. It probably needed a stitch or glue at the time but now it's been 48 hours so probably too late. Neither of my other MRI biopsy sites looked anything like this at any point. Eww.
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Gamzu, I think you should call about that. I'm glad it isn't bleeding and doesn't look infected, but it doesn't sound right, and I worry about what can get in there, too.
I'm so sorry you're dealing with this, ugh!
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The steri-strip peeled off completely around lunch-time so I ended up calling the on-call service because it just left an open wound about 4mm across. The doctor said as long as it isn't actively bleeding and there are no signs of infection, to just keep it covered with bandaids and it should be OK. No need to get it glued or anything. There's a clot in there that's leaving spots on everything it touches but that's apparently not to be worried about so I guess I'll just be wearing bandaids for a long time. Maybe if the spot comes back DCIS and my surgeon has to take it out anyway, she can do something.
People accidentally stab themselves with knitting needles and crochet hooks and things and those heal so I'm sure it'll be fine eventually. The clot is gross but is probably also creating a barrier to bacteria.
Edit: Credit to the on-call service, though. The nurse flagged my situation as urgent and the doctor who did the procedure was on the line with me in under 10 minutes. If only all medical office communication was similar.
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Pathology results in: benign. Dilated duct and "unremarkable skin fragment." Working on scheduling SNLB.
I have an initial appointment to start the egg freezing process on Thursday and learning what that entails has sent me for more of a loop than facing chemo. I don't know why. The whole thing seems miserable and embarrassing and I don't really want to do it but I also know that if I don't, I will probably regret it in a few years and there's no fixing it then. Anyone else been through it?
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Happy to hear your results were benign! Hopefully it will all be a smoother journey for you now.
I can’t help on the fertility side. I know there is a board for young breast cancer patients as well. There might be some good insights on that board too if you don’t get it here?
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gamzu - have you had surgery yet? If not when is it scheduled or will you do Chemo first? I only ask because your diagnosis was early August and we're almost in October.
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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.0 -
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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