ER-, PR-, Her2+ Roll call
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@dutchiegirl and @minustwo thank you both for checking in and the wonderful encouragement that we all need!! I know the other ladies will feel the same and be so grateful!!! Congrats to both of you!!
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@dutchiegirl and @minustwo - Thank you for the positivity! It's so exciting to hear about your journey and results. Thanks for posting!!
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@dutchiegirl and @minustwo You cannot imagine the good that reading your testimonies brings us ❤️ Thank you very much, hope is all we need 😊🥰 I'm so glad you're safe💐
You make me believe in a cure and in being able to do my trips and mountain trails again and having my waist-length wavy hair again. A normal life 🙏
All the best for you all!
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Yes honestly - hearing your stories of not just surviving but thriving post treatment are what keeps us going. Means so much x
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Hello everyone. Does anyone have an experience of having a baby post treatment for HER2 positive ER neg. During chemo, I have been put on gosrelin shots to freeze my ovaries (and plan to come off it after chemo is over), as we needed to start treatment quickly, there was no time to freeze my eggs. I know that we will need to wait a couple of years until after treatment is finished before considering this at all. The oncologist was clear that this "may or may not work".
I already have two beautiful children but we were planning to add to our family before this news hit us. I wasn't quite ready to close this chapter in my life and was just wondering whether, realistically, we have a shot.
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@jessybessy I am about your age but I can't help you because I haven't done anything about fertility. My case was very urgent and I started chemotherapy as soon as I could. However, I suggest you search here on the forum if there isn't already a topic about this, because there probably is 😊 I hope you get the information you want!
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Thanks for the recommendation of La Roche Posay Toleriane moisturizer! My face feels so much better!
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@jessybessy so sorry you are having to put adding to your family on hold for a bit. I hope you hook up with other ladies and get some great advice!!
Met with my surgeon today about the hard lump near the surgery site. She never quite said it's not cancer, but she is wanting an ultrasound before I start radiation. She wants to know if it is fluid or scar/fat tissue. If it's fluid, I should be good to go for radiation as planned but if it's not fluid, I will have to have a biopsy. Trying not to get too discouraged, but I was ready for those 16 radiation treatments to be over and only have the Phesgo to deal with until April. There is always that "what if" somehow a tumor grew this quickly after surgery. I say after surgery because they did a mammo and ultrasound the day before surgery to place the RFID markers. And wouldn't something show up on the scan for pre-radiation? It was with no contrast. What can they see in the scan for radiation treatment? I'm just aggravated to constantly have a test for everything.
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@dutchiegirl @minustwo I sending you 2 giant bear hugs for your so very hopeful and uplifting messages about life after cancer treatment! 💞
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Anytime lovely it works wonders x
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@beekaycro24 You're welcome, I'm glad the moisturizer helped, from what my MO said, it really is the best line of products in the market for the skin of those undergoing chemotherapy 😊
@grammie2 I hope it's just fluid and it doesn't delay the start of radiation, the sooner the better! But I'm sure if it's not that (and seromas are very common), it will be fat tissue or scar tissue. You achieved PCR, a tumor wouldn't grow that quickly, especially after chemotherapy, and from what I've read, what you have seems to be a relatively common thing. My ultrasounds and mammograms also never had contrast and it was with them that they detected my mass. I know that worry is normal, I'm like that too and I start thinking about all the scenarios, but analyzing the situation carefully, whatever you have won't be anything bad. I feel very confident 😊
And I hope your treatment is not delayed! Good luck 🙏
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@grammie2 Fingers crossed and praying it is fluid/scar tissue! I'm also praying for your worries to ease. I know it's tough, but you have a lot of people lifting you up in prayer right now.
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@grammie2 lifting you up in prayer for great news. Based on what @catarina_fm has found I would agree it seems too soon to grow so fast. ❤️❤️
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Thanks ladies! I agree with what you all are saying and am staying positive. I think I'm more frustrated with the possible delay and more tests/scans than the scare of more cancer. The surgeon said that with the seroma or fat tissue, radiation is not my friend. Sounds like radiation will aggravate either one.
I go for my first PT today for lymphedema (prevention). I'm not sure if this will be a one and done where they will teach me how to do this or if I will have multiple visits. Anyone else gone to PT?
Praying for all of you and hope everyone has a great weekend! I'm hosting a shoebox packing party Sunday for Operation Christmas Child. Tomorrow will be spent cleaning, cleaning, cleaning my chemo induced neglected house haha!! Small group of 5 couples and we hope to pack at least 50 boxes! I'm really excited about this and OCC is one of my favorite ministries to donate to. It will be great to have this distraction as well!
Hugs and love!!!
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@grammie2 we are all praying for you! I really really hope your treatment is not delayed! As soon as you have news, please tell us. And by the way, tell us how it went with PT! Some of us will need it too, I definitely will, and I'm also curious. Not sure about PT but here at my hospital patients have physiotherapy appointments several times! It's a bit annoying because I still live some distance away but I want to do everything I can to recover as best as possible.
My house cleaning day was today, I finally felt better from my mucositis (blessed magic mouthwash recipe 🙏) and I spent my morning doing that.
It is a great gesture to help children have a happier Christmas, I really liked your idea of packing shoeboxes! I always help an institution for orphaned or poor children here, they write a letter to Santa Claus with a request for a gift and I choose 2 or 3 and offer these gifts. But maybe I'll do something similar to yours too, the truth is that we always have so many things at home that we can be more sustainable and we don't even need to buy anything.
Great weekend to everyone! 💖
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@catarina_fm thank you!! That is very cool about the letter to Santa! Makes my heart happy about how the programs all over the world help put smiles on these children's faces!!!
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I'm not too far out from active treatment, but I thought maybe my perspective might be useful.
I was 40 at diagnosis (turned 41 the week before chemo) and I'd never felt so terrified in my life. This was in spring 2022. I never considered myself strong in a medical setting, and felt inadequate that I wasn't. But at some point someone said: "You don't have to be strong. You just have to show up." I get emotional thinking about that now. I had so many dark days going through chemo. It felt like it would never end, that I didn't know who I was anymore, and truth be told I still struggle with that from time to time.
I remember women who'd been there before me saying it'll fly by. One day you'll wake up and it'll be done and you won't be in that chair anymore. They were right. I used to read posts like this and think, oh gosh I'll never get there. But then I did. It was crazy. I still had to go back for Herceptin for over a year after that, but that was so much easier than chemo.
Then came the day that I wouldn't have to go back for Herceptin. Oddly, I was a bit scared to let go by then. But one of my favorite nurses chased me out of there. If she'd had a broom I think she would have turned it on me. LOL. That was nearly a year ago. Chemo two years ago next month. Surgery nearly 2 1/2 years ago.
Worry about recurrence is still strong for me, like so many of us, but it has gotten better. Things do get so much better.
I met two others during treatment, all of us younger. One was Stage 3c with over 20 positive lymphs. The other Stage IV De Novo, the youngest among us at 33. Both are doing really well, particularly my De Novo friend who's still NED. She's a constant inspiration.
Someone else once quoted Winston Churchill on this forum: "When you're going through hell, keep moving."
I think that'll apply to any tough situation for me now.
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@jh40 owwww thank you so much for your text!
Just yesterday I was feeling so discouraged, with these horrible side effects, no eyelashes, no eyebrows, looking sick. I, who had never had a health problem and was always full of energy, didn't even recognize myself. It warmed my heart to read your testimony, it really gives me hope 💖
I'm very afraid of the 2 infusions that I have left (6 already done!) because it's getting more and more difficult, I'm very afraid of surgery, I'm afraid of radiation. But the day of my last treatment will also come, I hope!
Things will get better 🙏
I wish you all the best!🌷
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Grammie: Yes to the LEPT. I went for several sessions after my mastectomy - diagnosed as mild LE on the left & directed to just take care, wear a sleeve at altitude, don't allow sticks or pricks or blood pressure on that arm, do exercises.
But after my recurrence and ALND surgery & chemo & radiation - I definitely now have LE in my right side. It's mostly chest and truncal (weird unusual option), but I've been proactive so it doesn't spread to my arm. (so far so good for 10 years!!) I wear sleeves & gauntlets when I fly. I wear a compression bra 24/7 - but I found one that mostly looks good under clothes. (I'll put the link below). I go in for LEPT once a year or every other year - maybe 6 sessions when they measure to make sure it's staying 'quiet' & re-train me on the exercises I'm supposed to do at home.
This bra was recommended by several docs for mild compression. Especially good that it is high in the back and under the arms. It's comfortable & dries quickly & low enough in front that it doesn't show under clothes. https://www.wearease.com/products/sydney-bra?variant=17218223013931
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@minustwo congrats on keeping it minimal! That is so encouraging! I actually asked the PT girl today about a compression sleeve while flying. She said no at this point. I showed no signs of it. I plan to go see my grands in January so I think I will ask the other PT person when I see her, just to see if I get the same answer. Thanks for the link to the bra. I will def. check it out!
The visit went well. She showed diagrams of the lymphatic system and explained what she would do. She measured both arms in several places and said she would periodically remeasure. She did mild massages and used a battery operated rotating massager on the breast. She commented how tight the skin was before she started and was very pleased at the difference it felt after the session. She showed me some exercises for me to do along with printed copies as well. I don't really feel any difference in the lump that is there, but didn't expect to.
@jh40 thanks so much for sharing your experience and how it's been since. This is really helpful for all of us! I too feel as if I'm not sure who I am anymore. Cancer is cruel on so many levels. I pray things continue going well for you!
Hugs everyone!!
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@dutchiegirl and @minustwo and @jh40 thank you thank you thank you to each of you for showing up here for us to lift us up. To hear that this will someday be a blip and that I could grow my hair long if I want, and yes, even hearing the full honest picture that there are some lingering emotional effects of going through such a dark and frightening time are all a big comfort to me. You give me hope and also grounding in knowing what’s ahead. I am so grateful. Thank you for returning over and over with your messages. It means the world.
@grammie2 I’m also here with hope for you that you’ve got fluid in there or something benign and that you’ll have no or minimal delay of your next step of radiation. I know that feeling of come ON let’s GO and get it behind you. Let us know what you learn. Meanwhile, I’m praying for you.
@grammie2 and @catarina_fm What an inspiration you both are in turning outside of yourselves especially at a time like this in your lives with Christmas lovingkindness to children. Also so glad the homemade mouthwash concoction was a success for you, @catarina_fm! I’m so glad for your relief!
@jessybessy Prayers and hopes to you too.This whole cancer and cancer treatment experience creates such turmoil and upends things in such huge and important ways. I am so sorry you have to deal with this. Were you able to connect with anyone else who’s also had to temporarily freeze their ovaries while getting the treatment done? I hope you’ve been able to hear some words of encouragement from someone with lived experience.
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Hey everyone! I hope all of you are doing well!! It's been kinda quite on this thread. I'm getting a little more anxious about this lump but the ultrasound is Friday. Should know by mid day hopefully. Went to my second PT appt and it was a different therapist. She said there is def. some swelling/fluid but that is separate from the mass. Glad I'm going to PT for sure though cause it seems like I may be a candidate for lymphedema sadly. Praying the PT and being proactive will keep it at bay.
So question for the ladies who are post chemo. Do you think your metabolism changed during/after chemo? I feel like mine is different. Before chemo, I struggled with weight and the only way I could lose a pound was to never eat carbs. I'm eating pretty decent, but including some pasta, bread and other things that used to pack on weight. My weight is staying stable only fluctuating a pound or two mainly because of the leg edema (which is getting a lot better!!!). I had lost about 20lbs from the time leading up to the diagnosis and the end of chemo. Half was lost before chemo during the waiting on diagnosis, diagnosis and waiting to start chemo. Just wondered if metabolism change is a thing??
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@grammie2 Sorry to hear you're dealing with lymphedema, but it sounds like you are getting a handle on it. Please keep us posted on your ultrasound. I've been praying for you and will continue.
I have been enjoying this week as much as possible as I go for treatment #3 tomorrow…my halfway point, WOO-HOO!! I catch myself trying to do as much as I can for my two "good" weeks in between treatments. We've had very nice, fall weather here in Georgia so I've been outside as much as possible.
I'm hoping the quietness is due to "no news is good news!"
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I'm in for #3 next week too.Will be thinking of you lovely x
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Ugh. One of my implants is much lower at the bottom today than the other. I think it’s slipped out of its pocket or something like that. I have a follow up next week with my PS scheduled already for my nipple reconstruction so I’ll see what he says. I have a feeling I have more surgery coming my way.
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@aborayis so sorry!!! That stinks!! Let us know what they tell you.
Hope everyone is doing ok and can check in soon with updates!
I have two big PTL's! We packed 50 shoeboxes!!! We had a lot of fun packing and enjoyed the food and fellowship! The second is, my lump is fluid!! Not that a seroma is great news, it's just better than what it could have been. My surgeon never did call me to give me the go ahead for radiation scheduled for Monday. I will call my RO Monday morning and get his take. I'm not sure who has the call on this situation, the surgeon or RO?? I'm going to plan for being at the radiation appointment if I don't hear anything. I'm sure I'm not the only breast cancer patient with a seroma that the RO has seen.
Hope everyone has a good weekend and those who just had treatments, hope your SE's are mild!! Hugs all!
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@grammie2 thank goodness it was fluid! I'm guessing your RO will make the call.
@aborayis so sorry about the implant..ugh how frustrating! When I had my exchange surgery after BMX the surgeon said he did an extra procedure at that time to "tighten up my left capsule" aka capsuloraphy. After that surgery I felt that my left was deviating slightly more to the left but now it has settled and is better. Not sure what they will do for u but wishing u a speedy recovery. Sending you good vibes and a 🤗.
@jh40 thank u so much for sharing. I will remember that churchhill quote!
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@grammie2 So glad to hear it's fluid. I hope you are given the go ahead for radiation, as I know you are ready to move along in your treatment!
I'm doing okay after my 3rd/halfway point of chemo. Went for my shot and more fluids today. Receiving fluids after chemo meds and the shot really seems to help a lot. I had a little fluid retention in my legs today, but I made sure to prop them up when sitting. I also walked for a bit around my yard. The swelling has gone down, so I'll make sure to keep a close eye on it so it doesn't get worse. Still battling the whole thrush/mucositis crap. I don't think that's ever going to fully go away until after chemo. I'm hoping not to have too bad of side effects, but you never know.
I hope everyone has a relaxing weekend.
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@beekaycro24 did you get the Magic Mouthwash? I hate you are still having those mouth issues. And I had leg/feet edema too. Actually still dealing with it almost 3 months post chemo. It was really bad the 5th and 6th treatment. I've saw improvement the last few weeks, but pretty much have to wear knee travel compression socks. They gave me 6 days of Lasix twice, but it's hard on you and my mag was always low. Pray yours clears up soon!
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hi all, so sorry to read some are having edema, mine popped up at then end of treatment but has all but gone away now. Glad @grammie2 that your spot is fluid, what a relief that must be. @beekaycro24 I found fluids to be a Godsend as well. Really a game changer as I was really struggling at the end of treatment. The last two were definitely that hardest but there is light at the end of the tunnel.
In other news, last week when seeing my oncologist before immunotherapy, I was looking at the giant Ipad screen thing with ads and such in the exam room and I saw breastcancer.org on there!!! This forum has been such a blessing to me, I was so happy to see them advertise it.
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