ER-, PR-, Her2+ Roll call
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Hi all! Welcome @jessybessy to an outstanding group of support. Hoping you find comfort and hope here. I 🙏 that you Floridians stay safe. I have family in FL Tampa and Orlando and so I'm watching this crazy mega storm closely.
I'm healing up from my tattoos- still getting use to my new look! I went all in with a bold henna inspired design. Thank u all for your kind words, and yes I do feel upbeat with a sense of closure.
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I totally Googled henna breast tattoos…what a great idea! I showed the hubs and told him this could be something I might do. They are so pretty. I have D cup and dense breasts and have thought about going small (or nothing at all) if I have to have a mastectomy, but these tattoos are changing my mind.
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Chemo round two is a success, as of right now anyway…lol. My genetic testing shows no BRCA gene, so I'm still on for a lumpectomy after my six TCHP doses. I will get scans in a couple of months. My oncologist said he's aiming for at least five TCHP doses and see where we are. I did receive a bag of fluids after all of my meds today and my onc nurse said to ask for another when I get my Udenyca shot tomorrow. I'm definitely doing that. These steroids only let me sleep two hours last night! I took them with my afternoon snack this afternoon instead of waiting for supper, so hopefully I'll get better sleep tomorrow. I was also given a prescription for more Nystatin. The onc said to take it as long as needed. Mucositis was NO fun!
My genetic testing shows I have the VUS EGFR gene…Variant of Uncertain Significance of the Epidermal Growth Factor Receptor. I Googled it and it says it "is an unknown mutation of the EGFR gene that is of unknown significance. The EGFR gene produces a protein that is involved in cell growth and survival, and mutations in the EGFR can cause cancer cells to grow and spread."
Has anyone here heard of it? It sounds very similar to the HER2+ protein. My oncologist said the significance is unknown and he was making sure to put it in my file for future reference. The genetic testing company will update my onc as updates become available. I'm thinking this is definitely a long haul battle. The EGFR gene is associated mostly with lung cancer. I did have two small nodules the size of pencil erasers in my lungs (one in each lung) on the CT scan with contrast, but the onc hasn't even talked about this. I figured they are possibly treated with the meds I'm already receiving.
I hope all of you in Florida are well and only had minimal to no damage. You are in my prayers!
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@beekaycro24 Yay for #2!!! I received fluids in between treatments and it helped tremendously! My MO was very proactive and scheduled me twice the week after chemo and once the following week. I ended up with low magnesium half way through, so I received mag as well.
I was told I didn't qualify for genetic testing. I really wish I could be tested. I've not heard of the EGFR. Hope you get some more information on this!
And agree @beekaycro24 I'd love to hear from our FL ladies and continue praying for them!
Everyone have a great weekend. I go to the RO today at 1. Will see what the radiation plan looks like!
Sharing a picture of the Northern Lights we could see in SWVA last night. Hubby did a timelapse.
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I Googled some more and found this on the National Human Genome Research Institute website: When analysis of aptient's genome identifies a variant, but iis unclear whether that variant is actually connected to a health condition, the finding is called a variant of uncertain significance (VUS). In many cases, these variants are so rare in the population that little information is available about them. Typically more information is required to determine if the variant is disease related.
My onc said that it the genetic company will continue monitoring the variant and will send updates as they are found. So…concerning, but maybe not? I'm a believer of the "no news is good news" policy, so I'll stick with that.
@grammie2 Can't wait to hear about your radiation plan. Radiation is one that I worry about doing…not sure why. My onc hasn't mentioned radiation to me, so not sure if it's even something they are considering or maybe it's just too early to consider. I'll know when the time is right.
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Thank you for the lovely warm welcome from everyone. Have infusion number 2 on Tuesday, so am preparing myself for 😪💩🫠 It had all just gone back to normal, ha ha x
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I had my 2nd infusion Thursday…so far so good for me. I developed mucositis after my first one and that was the worst! I'm making sure I stay on top of mouth rinsing, saline nasal moisturizing spray, and yogurt probiotic shakes this go around. I'll keep you updated. Tomorrow and Monday should are my "not so good" days 3 and 4.
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Hello everyone, I hope all is well with you!
@beekaycro24 I'm also going for my second round of TCHP next Wednesday and I hope that, like with AC, the first round was the worst. I also had mucositis and it was horrible, furthermore I had painful blisters on the soles of my feet that prevented me from walking for a few days... so put on moisturizer! I saw that it is one of the most common side effects and that it can be resolved by putting lots of cream on your feet.
I was already feeling "normal", my sense of taste had returned, and I'll feel bad again. And I hate having to inject myself for 5 days straight with medication that makes my bones hurt. But it's worth thinking that there's less and less left for this phase to end.
I also tried to search the VUS that appeared in your genetic test, but even reading scientific articles I didn't come to any conclusions, because, as you said, it is still not certain whether this type of mutation is linked to the appearance of cancer. It will take many years of study and analysis to determine if these variations are linked to cancer. I'm still waiting for my genetic test results, even though I already had blood tests for it in June. I only have the oncogenetics appointment in December.
@grammie2 what a wonderful photo! Apparently, it was possible to see the northern lights even in Portugal, how is that possible? And last year it happened too. I've only seen them once and it was in Iceland.
Do you already know your radiotherapy plan?
@jessybessy I hope you are well and that the first infusion was the worst ever!
@bailey.boo How was the storm, are you ok?
Take care!
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Happy Saturday everyone! Sadly, there was an issue at the RO's. My MO had called and did the referral, but the RO didn't have me in their system! I questioned how they had a date and time, but they couldn't figure it out. Hubby and I both took the afternoon off work and I was so frustrated. I was first told that my RO was booked out 3 weeks!!! But finally someone is scheduling got me in next Wed. So still waiting. Believing that it was a God thing and there is good reason for the delay.
Big hugs to all of you who are doing your next treatment!!! Praying all goes smoothly and minimal SE's!!!
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Please do! Hoping that the second round is much better for you x
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I’m late and catching up, but hi @jessybessy! 👋 I’m so glad you found this thread and these ladies— they have been the sanity in my journey from the first days 💕
Enjoy your weekend! There’s always a couple of good days to make the most of. Helps to think of and look forward to again on the feeling ucky days.
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I’m all safe and dry over here! We lost power for a bit, water for an even shorter bit, and I’ve been watching our house go back to normal and our neighborhood cleanup efforts.
I’m healing well, but I can feel it since those drain pump wires were yanked. One was stuck and had to be pulled and stretched on a lot more than the other. I think things got jostled around in there wrong. I’m still with drains and antibiotics. I think it might be the drain cords wrapped around in there. Hopefully Monday! After the pump wires ordeal, I’m looking so forward to losing the cords, but I’m looking so not forward to losing those cords! Haha!0 -
I have the CHEK2 gene mutation. I reconnected with a relative yesterday and learned more family medical history. And wow. It confirmed which branch that mutation likely comes from even more!
I hope your second infusion treats you much better than that first one did! You sound armed and in warrior mode, ready for this! 🎀🏹
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@bailey.boo so glad to hear that you have power and water! I've been looking at pictures of the hurricane's aftermath and it is hard to believe!
@grammie2 your pic of northern lights is so cool! We have made a couple attempts to see it in Minnesota but it evades us each time. 😕 But I love looking at all the pics!
@beekaycro24 I looked online like forever re decorative chest tattoos.. actually since I was first diagnosed! Thinking of it and idea actually helped motivate me to get through my recovery..sort of like a reward at the end of this crazy journey. I never had a tattoo before and now both of my boobies are tattooed..there is a feeling of empowerment. I don't know how the tattoos will be in the future when I have to have surgery again to replace implants or if I choose to go flat..but I didn't want the what ifs to hold me back.. I focused on living in the moment n took the plunge!
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Yes I'm loving this thread - it's so great to see so many positive survivor stories. I find some of the Facebook groups to be very overwhelming, to be honest.
Hoping #2 is easier than the first though am getting slightly nervous as I have a sore throat atm 😬
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@grammie2 ooooh! Those Northern lights are so pretty! Boo about the radiation appointment mix up. Good luck with your new appointment. I hope all goes well.
@baileyboo I’m glad you’re safe and dry.
It’s great to hear all our TCHPers getting through it. In a few weeks you’ll all be halfway done.Nothing new on my end to report. Just enjoying the lashes I got myself as a treat since they’ve come in sparse and short. Kinda wish they would last longer than they do, but still a nice little treat.
Hope everyone has a good rest of the weekend!
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Question for you post lumpectomy ladies. I can feel a "lump" at the center of the incision. I felt this soon after the lumpectomy and assumed it was stitches, tissue healing, etc. But now it's harder and more roundish than long (like my scar). In reading, this seems normal. I plan to ask my MO when I go back for my next Phesgo, but wanted to hear from you guys in the meantime. Hoping to ease my concerns a bit. Thanks ladies!
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Just checking in with everyone. I hit my wall yesterday and could not stay awake for any length of time AT ALL. But, I feel so much better today. I had the bone aches this go around…what a crazy feeling. I forgot to take a Claritin before my shot on the first round, so I took it later in the day. This time I remembered and took it before my shot, but I think I'm going to take it afterwards the next time and see if it works better. I am SO over this whole mucositis-nothing tastes good part of chemotherapy! I know….wah, wah. I just can't get over how losing your enjoyment of food changes your mood in general. BUT…I am happy to report that I have a handle on my gut as far as bloating, etc. My onc said to take Gas-X…game changer! And I'm even happier to report that I can see/feel the biggest difference in my tumor. I mean, REALLY big difference. I even had the hubs check just to make sure it wasn't all in my head. He couldn't believe it either. It's working! :)
Hope everyone had a great weekend and will have an even better week!
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This is wonderful news @beekaycro24 we are happy to hear it is working! Wishing you a wonderful week as well ❤️
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@beekaycro24 yay on the tumor shrinking!!! The taste thing does stink for sure. My taste was off for usually a week. Have you found anything that appeals to you? Mine was generally cold and sweet. I had a lady tell me she lived off of YooHoo's and peanut butter. I took Claritin every day, not just when I got the Neulasta. I think my MO recommended taking it for five days or so for the bone pain, starting the day of the injection, but maybe I'm not remembering correctly. I continued taking it for the weepy eyes though.
Hope everyone is doing well!! My MO said to show the incision area/lump to my RO tomorrow. It has only been 5 weeks since surgery (with ultrasound and mammo the day before). I sure hope nothing has grown that quickly!
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Hi all! Met the RO today and I really like him! He is recommending 16 treatments to the breast only. Once insurance approves they will have me come in for the pre-radiation stuff hopefully next week. He said surgery area has healed nicely. He did feel the area I am concerned about and he wants the surgeon to asses as well. But he feels certain it is fluid. He said he was not concerned at all about it being cancer, but stated he would be doing the scan to mark the area for radiation and that could ease fears. I will also see PT for lymphedema as a precautionary measure which would be beneficial to the fluid in the breast as well. I'm thankful for this recommendation and want to do everything I can to keep my arm from becoming affected.
How's everyone's week going??
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Sooooo happy that you're seeing a big differencex
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Had my first onco appointment following second round of TCHP. She was so excited by the results that she jumped up and down and said "yaaay" ha ha. They couldn't feel any masses and nipple is no longer inverted 🥳
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Great news! I'm so happy your RO isn't concerned…always a good sign! My mucositis is kicking in after all. So far I'm okay with eggs, toast, legumes (lentils, etc), sweet potatoes, bananas, apples with peanut butter, peanut butter in general…but I feel like I'm just not getting enough protein. I can eat grapes and love the juiciness of them, but they don't taste like I know they should. We're in a cold spell right now, so I'm going to make chicken and rice soup for supper. Fingers crossed I can taste it! **update - My onc just called in Diflucan, so hoping this helps!
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SO excited for you! I've seen a huge difference in mine since two rounds as well. Praying for continued healing!!
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Oh gosh that is great news!!! Sounds like you have a MO like me who really cares about the patients!! Makes a world of difference!! Congrats!!
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Glad they are giving you something to help! I felt the same about not getting enough protein, and still feel that way. I did try to drink chicken or beef broth often to supplement. Every little bit helps!
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Hi! I had my 6th infusion today, 2 left! Let's hope that the SE will no be awful this time...
@aborayis you are getting plenty of protein! Eggs, peanut butter, legumes... Chickpeas are very high on protein, for example... Eggs are mainly protein. However, chicken and rice soup sound very well 😊
When I can't taste the food (almost always since I started TCHP), the most difficult thing for me is managing to season my food. I always have to ask for help 😅 I can't fell the salt, for example.
@grammie2 that lump you feel can't be cancer for sure, it's impossible that fast! Not even mine, which grew immensely in 2 months, was capable of such a feat. There must be some complication with the scar, I'm sure! It's normal to be insecure but it won't be anything bad, you'll see🙏
@jessybessy I am so happy for you! 🙏 I started with another type of chemo but I only saw big differences in the size of the lump after my third infusion. Now I can barely feel the lump 😊 my MO said that it is normal if we can feel something, the cells can be already dead but the body needs to absorb everything and it needs some time.
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