TRIPLE POSITIVE GROUP
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Hi GreenBean! I also had TCHP. Somehow I was very optimistic and planned to work through it all. In the end, every cycle I had to take a little more time off. And I will have to admit, there are days when I was at work and less than fully engaged. But the oncologists had warned me that everyone is different, and some people sail through and never need time off and some are hit hard with side effects and there is no way to predict. So all any of us can do is take it one day at a time and try to be gentle with ourselves, and hope that our bosses can be understanding!
I did make a point to get outside and do at least a little walking everyday, and on the worst days made myself get up and walk once around the house every hour.
Hang in there, and try not to let your mind get too far ahead!
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Thank you @yesiamadragon and @cardplayer for your encouragement! It really helps to hear from folks who've had the same chemo. I'm fortunate to work at home and my bosses are so supportive. It will go however it goes. I am in the chair now and will take it one moment at a time. Take care!
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Hello, All-
I am halfway through neo-adjuvant chemo and targeted therapy and have been having significant discomfort/pain in my right breast (site of tumor). Did anyone else experience this? I have no idea if the tumor is shrinking, per se, however, it does feel different. I am not scheduled to have an MRI until February, which is right before my last chemo cycle. Nervous, as I did have pain in my breast due to the size of the tumor, prior to being dx'd.
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Hi!
I did neoadjuvant chemo for my cancer, and I can't say that I experienced serious pain in my affected breast at the time. However, I also didn't experience any pain prior to the mammogram that revealed the cancer either.
I did know that my lump was shrinking because it was close to the skin and my oncologist could measure it with a ruler (! I know, high tech). But, yup, you're probably going to have to wait for the MRI (and possibly the pathology report because the MRI might not capture everything). Congrats on making it half-way through chemo!
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New year, new rash! Sudden onset of erythema and bruising localized to my cancer breast within the last 2-3 weeks, coinciding with a very mild case of Covid. My MO referred me to my surgeon since they have U/S capabilities in-office and that appointment is soon but my RO saw me today and strongly suspects I have radiation recall dermatitis. She pointed out that it is not just on my breast but in the radiation field in general as I have a bruise on the ribs under my arm too. I already had a derm follow-up next week and after messaging them about this, they're planning to take biopsies to pinpoint what the heck is going on. Her other guess was "morphea," which I need to research more. Malignant possibilities were not really on her list for numerous reasons she explained, and she told me not to worry about that, so I'm trying to take her advice (sort of successfully; secondary IBC is hard to get out of my head). I hate, HATE biopsies and waiting for results but the timing of the derm appt really couldn't be better. She thinks I may need steroids again but wants derm to determine that. As opposed to the last rash, this isn't really uncomfortable, but the bruising is weird. It looks like my lumpectomy healing reversed itself.
My RO is concerned about the role of Aromasin in all this, though she thinks Covid could have set it off too, and if it is RRD, that will be the second adverse event in 4 months with Aromasin as a suspected contributor. Which I think will be the end of my MO's tolerance for letting me re-challenge it. Oh well.
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Thank you for the reply. I kind of figured as much- the waiting until after surgery bit- and I am mostly resigned to it without much anxiety. However, the pain and swelling have me wondering... and stressing, at times.
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Hi all - hope everyone has had a lovely holiday season.
I’m nearly 7 weeks post chemo. On Trazimera only now and have had 2 rounds so far. I want to know if anyone else had this burned/metallic mouth feeling post chemo and if so for how long? Also dealing with the same burning sensation in my shins whenever I crouch down and whenever my shins rub against anything. Cold sensitivity in a few of my teeth. Anyone else have any similar side effects that lingered?
Hair is starting to come in. Eyelashes and eyebrows too. Fatigue is only showing up randomly and isn’t long-lasting. I walked 3.5 miles on Monday and 1.5 on Tuesday with no trouble.
Specialk - if you happen upon this post my eye twitches are starting to go away
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jh40 - I can't speak to the lingering side effects, other than to say that I hope they too dissipate. I am wondering if your shin discomfort could be neuropathy? You might see if some L-Glutamine helps. Yay that your eye twitches are on the way out!
gamzu - geez on the new skin thing! You need a break! Hoping it is something easily dealt with - I am so sympathetic, as I am allergic to so many things that express themselves as rashes. This is such a bummer for you.
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SpecialK - thanks! I’ll be glad when the twitches are gone completely but I’m so much better off now than I was 7 weeks ago! I’m also inclined to think the shin stuff is neuropathy. Only thing that helps is exercise, so I’m trying to walk at least 10 miles a week to start.
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Met with derm today, with all the bruising resolving to yellow and fading. It looks a ton better than when I sent them the photos, a lot got better in the last 3 days or so. Derm said there is no way this is secondary IBC because it would not go away like this, did not need to biopsy. He concurred with the radiation recall diagnosis, probably triggered by Covid. He did say I will need to think about this with sun exposure and other things as it seems like I may be extra susceptible.
I also suddenly started breaking out in hives on my chest at the appointment, which was at once ridiculous (I mean, come on, what else) and also convenient. They think this is also a leftover from Covid and I'm on 2 weeks of double-dose antihistamines. If that doesn't work then we start looking at the Aromasin again. Ho hum.
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Good news, gamzu! My radiologist encouraged me to get those sun-protection shirts for the summer because I do a lot of outdoor swimming.
OY about the hives...but at least the derm saw them in person.
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Hi all, I have finsiched my kadcyla in octoboer and just had 3 month labs done. calcium a little high..doc ordered blood work and a ct scan for neck chest pelvis to check parathyroid. Im not understanding y I need all of those areas scanned. He said he is not concerned about cancerbut needs to be tended to point??
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It finally happened: my rashes have achieved fame. The dermatology clinic reached out today to ask if I would mind sending them images of Radiation Recall Righty, to be featured as a teaching case. It's about time someone recognized my talents in the area of achieving bizarre, disgusting skin reactions! At least it feels like this latest episode had a point now, if it helps someone else down the line.
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LOL, gamzu710! Your fifteen minutes of fame have arrived! Own it!
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Hi All, I am five years out from initial diagnosis. My back has been hurting and I got an MRI done yesterday. The results show an enhancing osseous lesion on my spine, and says that metastatic spread can't be excluded. I am terrified. It sounds like a tumor on my spine. Does anyone have any experience with this? My appt with ortho doctor is not until the end of the week.
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amybirnbaum1- Have you had your CT scan yet? I will have Kadcyla #7 tomorrow and CT scan #2 next week. The first one in May showed a lung nodule and thyroid nodule and I had to have half my thyroid removed 5 weeks ago. Parathyroid okay so far. Now they are re-checking the lung nodule. It feels like they are determined to find as many things wrong as possible, and then they wonder why we need anxiety meds! Hoping for a good result for you!
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My oncologist just called and said he received the report from the MRI and it does not look good. Looks cancerous to him. He said I will get a bone scan and CT scan very soon. But he is said prognosis is not good if my cancer has spread to spine. I really pushed him for answers on the phone, which he was very hesitant to answer, but I said if this is cancer, is it survivable and he said everything is treatable but the survival rate is not good. I am devastated...
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tld,
It might help if you go visit the Bone Mets Thread to meet other breast cancer patients with bone mets. Many women with bone mets have been living for years with them, and you can discuss various treatment options and the like.
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Thank you, elainetherese, grateful for the suggestion.
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Hi tld. How are you doing.
I remember you from five years back. I am also close to reaching the 5-year mark (counting from surgery date); I am at high risk of distant recurrence, because I had a lot of cancer in my nodes and other ominous signs, so I think about recurrence often, and I keep up with the topic and the news. I also have back pain or should I say discomfort. I have had a few scares, in the end scans never came up with anything. But it may happen any day. I have kind of learned to live with this fear and the scans and scares get less scary each time.
Here is hoping that the biopsy doesn't confirm that this is cancerous. But please do not fall into despair. You are the same person you were before this finding. Even if it gets confirmed as a bone met (not confirmed yet, although I understand hearing from the oncologist things like I suspect metastases and bad prognosis, has to be distressing, and I am very sorry that this has happened to you), bone mets are the least bad of the distant mets to get, and many live many years with them, uneventfully. If you had a distant metastases, the oncologist will never say the word "curable" again, they have to stick to "treatable". They have to. That sucks. But do not let that sink you -you would still have reasons for hope. Once the recurrence is confirmed, if it is confirmed, you look at the options and start some treatment and you may do very well. You never know. Your cancer is triple positive which is a good thing -many targets and many treatments, with new ones every day.
Again, remember that you are the same person you were two months ago, and that you dont deserve to live in despair. You are strong and you can deal with this and with anything that comes your way.
We are here for you sister. Big hug
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Laughinggull, thank you from the bottom of my heart for your message! I literally had tears in my eyes reading it, which sound dramatic, but it's true! Everything just seems so big, so scary, the doctor's words resonate in my head. So reading your words gives me some peace, which is priceless right now. Thank you so so much for encouragement, I know that I will read your message over and over again! Huge hugs back to you!!
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tld2017 - I’ve been thinking about you since I saw your post. You and I have very similar diagnoses if your signature details are correct (I know there have been problems with those, mine included) except my tumor was 1.9cm. I am still in active treatment.
How are you doing? I just wanted to say that I was thinking of you and hoping for the best for you.
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Hi JH40, thanks for checking in on me! It's been a wild ride for sure the last several weeks. Well, the whole body MRI with nuclear contrast and the CT scan did not show the tumor as the initial MRI did. At first, I was very excited about this but then realized after messaging with others in the bone mets group that it is not unusual for this to happen. My oncologist has ordered a pelvic MRI to very specifically look at the sacrum where the tumor was initially found about a month ago. So I don't have much more info for now other than at least the CT scan and whole body scan with nuclear contrast did not show any further tumors. But there is still a possibility that the sacrum tumor is still there and just went undetected in the latest two scans. My oncologist did sound much more upbeat this time though, and said that treatment is so much better than it was even five years ago when I was first diagnosed. He felt like it was something that I could beat again. I think he was much more upbeat because the two latest scans did not show further progression which is what he was afraid of. My husband and I both cried in his office after he walked out - we were sure I was in very bad shape after his initial words when the tumor was first found, and just to get some more encouraging words from him was such a relief, such a gift. So I am not out of the woods yet by any means, but even if the tumor is cancerous, he gave me some hope this time around. My pelvic MRI is on March 17th and the follow up to discuss results is on March 23rd. Thank you so much for thinking of me, and I wish you the best too in this journey fighting cancer! If I can answer any questions that you have about anything at all, please feel free to ask! The other ladies in the group are so much more knowledgeable than me about all of this, but I still might be able to help you in some way!
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tld,
Is there any chance of a false positive on the first MRI? I had my left femoral neck (hip socket) light up three times on PET scans but it didn't show on a CT scan or an MRI so my oncologist wrote it off as a false positive. I'm glad to hear that your oncologist is feeling optimistic!
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ElaineTherese, you have no idea how much I pray so, literally day and night I pray for this, but I've heard from enough people in the bone mets group to think that is not likely the case. But, wow, that is so awesome that yours was a false positive!! Gosh, I can't imagine your relief in finding that out!! Thank you for spreading some light in a world that is often so dark!
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tld2017 - I’m so so glad that the MRI did not show further spread. That is such a relief. I’m so happy for you. I’ve truly been thinking about you all the time, and I know I’m a stranger but we’re all in the same club and when it’s one of us it really feels like it’s all of us, you know?
I was curious if your signature details are right? Did you have no lymph node involvement in 2017?
I’m friends with a woman who was diagnosed De Novo with spine mets a couple of months before I was diagnosed. She had near PCR with her treatment cycle. She’s doing well on Kadcyla. We have the same oncologist, and he’s been so optimistic for her even before she had PCR. He keeps up on the latest studies and he said that the things he’s been reading about Stage IV triple positive and standalone Her2+ have been very encouraging. It makes me feel optimistic for her, you and for all of us.
I’m hoping for the best outcomes for you.
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JH40, yes, my signature details are right, no node involvement in 2018. Aww, your message is so kind, big hugs to you through the internet! Thanks for telling me about your friend who is doing well, the positive stories are so good to hear! Your messages have really touched my heart, thank you!
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tld - HUGE hugs back to you! I’m thinking of you over here in my little part of this world.
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Hi tld,
I am so happy of hear of the encouraging news and reaction of your onco. I will be thinking of you tomorrow, since you will have the pelvic MRI and I myself will be going to the oncologist for a check up. Fingers crossed for you, sister! Let us know when you get your results. You are strong and you can do this. We are on your side!
LaughingGull
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Laughinggull, thanks so much for thinking of me! I am leaving shortly for the pelvic MRI and trying not to be too afraid. I hope your appointment goes well today too! Also, thank you for the encouragement, reminding me that I am strong and that I have emotional support through this group - that is a treasure to me! My appointment to get the results is next week on the 23rd - the waiting is so hard. But I will try hard to distract myself and think positively! Happy St. Patrick's Day to all here!
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