ER-, PR-, Her2+ Roll call
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Radiation is going well! I'm 1/10 of the way done. I've been able to stop and walk for 30 minutes or more on my way home every day. I bring my Calendula cream with me and lotion up in the car, then the hubs lotions up my upper back/shoulder area. I make sure to completely cover up from the sun. I've scheduled my next four physical therapy sessions (once every two weeks), so that puts me through May 5th, then I'll be evaluated to see if I need more. I've been doing my assigned PT exercises at home and cannot believe how stiff a couple of radiation sessions have made me. Kadcyla is treating me well, knock on wood…lol I will receive my next treatment on April 2nd, right after getting my radiation treatment done.
I hope you all have a great weekend!!
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That's great to hear that everything is going well! Don't forget to apply cream on your neck as well! I got darker in the neck area, and I still have some radiation spots, but the skin is peeling off, and the new skin looks great. Eventually, everything will peel off and look perfect. Yes, radiation makes the arm and breast very stiff. I did exercises every day (it only took me 2 minutes to do the recommended ones), and it helped a lot. Right now, I’m feeling great and have regained full movement. But it's really important to keep doing the arm exercises and to massage the breast once a day.
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I’m glad to hear you’re moving along through the radiation treatment and also taking such good care of yourself!
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Hi Ladies!! I hope all is well!! The quietness on here makes me think everyone is doing well and maybe some are winding down their treatments. I pray all are doing well in whatever stage they are!!!
@beekaycro24 glad radiation and your med is doing well! Are you still getting Phesgo? Or just Kadcyla?
I just found out a friend has breast cancer. I haven't talked with her, but text with her husband. I understand she is not a HER2+ gal, but she is positive HR and PR and tested positive for the gene. I'm not super familiar with that diagnosis. She has met with the surgeon and has a MRI scheduled and appt with the MO. Turns out she has the same surgeon and MO I had! They were so wonderful and happy she is seeing them! Not 100% positive, but she was told she is a high candidate for chemo. Hoping to find out more soon. I'm in a small town (population 15Kish). There are 5 that I know of going through BC right now. So sad!
The skin thickening on my boob that the MO pointed out seems to be getting worse. I still have fluid in it as well as the seroma. I just can't stand to even touch it anymore. Stupid weird boob! Ugh. No improvement in my hair either. I'm having a grumpy night LOL!
Hugs to you all!!!!
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@grammie2 - I'm just getting Kadcyla, which has Herceptin and Emtansine (a chemo drug). I go on Wednesday for dose #2. I will say, looking at my insurance billing/payment, I am shocked that the one med is just as costly as the four of TCHP! I figured it would be cheaper, but thank God I have insurance. Radiation is going well, so far. I've been doing my PT exercises - actually started doing them twice a day. I noticed I get really tight in my arm movement after radiation, so I'm making sure to stretch more. I hate to hear you're still having skin and seroma issues! I'll pray for it to get better.
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@beekaycro24 isn't it crazy how much these treatments cost! And yes, thank God for insurance! When I started my chemo last year, I had already met my high deductible. So when the deductible started over in Jan, I was just getting Phesgo, which with the cost of it I met my deductible shot #1 of the new year. My cancer center called me asking if I would like to apply for a grant that if approved, would cover the drug cost (not blood tests or doctor or administering). I figured I wouldn't be approved because of our income but I was approved! Sounds like it is not based heavily on income but deductibles. I told her how thankful I was that they helped me apply. She said the doctors there ask them to help patients apply for various offers available to help cover these outrageous costs. The doctors want everyone to be able to focus on healing, not worrying over how to pay for the medical bills! Made me love them even more! Saying all of this to encourage anyone getting treatment to check into any available programs out there to help cover deductibles and copays. So glad you are doing well!!
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@grammie2 fantastic advice re asking about available programs to cover drug costs! Thank u! Sorry to hear about the ugly duckling..I think most can relate to having an odd appearing boobie that just doesn't quite feel right.
@beekaycro24 PT is the way to go! It totally saved me after my BMX.
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Hello lovely ladies, hope you're all ok.
I'm doing just fine, started phesgo a couple of weeks ago and also have now had round 3 of 15 radiation. It's fine but leaves me very tired, and gives me some aches in the radiated area. No skin changes so far, though.
Had a second opinion Zoom consultation with a surgeon from the Royal Marsden last week (have been treated out here in Qatar but wanted to get a second pair of eyes on everything). Royal Marsden is one of the best cancer hospitals in the world, for context.
He agreed with everything they’d recommended basically and said they’d taken excellent care of me which is always really nice to hear. Couple of (reassuring) things from him I thought I’d pass on:
•Because of some of the Facebook groups, I have been terrified about brain mets. Bloody Facebook. The surgeon reassured me that these days, it’s very rare. He said the reason they don’t scan your brain at diagnosis is because of how infrequently they happen.
- HER2 patients now have some of the best outcomes among all breast cancer patients because of how effective the drugs are to treat it.
Xx
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@jessybessy I'm glad you had that consult and found reassurance! I remembered you are in another country, but it hit me this morning when you mention Qatar where you are. Both of my boys are in the air force and one was deployed to the UAE and the other near Qatar. He actually got to go to Bahrain for 3 weeks as an instructor. He said it was so beautiful!
On the brain thing, I know what you mean. Any mets are scary but something about the brain. A lady I know her daughter had breast cancer with mets to the brain. She is still in treatments (for a few years now), but is living a pretty normal life otherwise. She was not HER2 but I don't really know which type she had. But yes, treatments have made such a huge difference! One of the first things my surgeon told me was not to look at any data for HER2, that it hadn't caught up with the treatments. When she was using the whiteboard to discuss my diagnosis, she had HR PR and HER2 written down. She put a minus at the HR and PR and then a + at the HER2 and added a smiley face. I was like is this woman insane?? I had read online and HER2 sounded just awful and hard to treat. I get it now but the HER2 diagnosis was especially scary at first because of the data out there.
I hope you all have a wonderful weekend!!! Hugs!
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hi all! Sending love and good vibes. Today is my last day of work after 35 years at Verizon, I am going on “forced retirement” but its truly a blessing. I am so grateful to have you ladies as virtual friends and support.
@grammie2 I too have a very tender breast especially to touch and had limited range of motion in my arm but recently finished PT, it helped a lot with ROM but I remain tender. Not sure if thats forever or what but even hugs are uncomfortable. 🥴
@jessybessy thank you for sharing that info, its always wonderful to have encouragement. I am optimistic for our collective long term outcomes.
Have a lovely weekend all!!
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@djschmidt1 Sorry to hear about your forced retirement, but I am sure God has a plan in place for you. I hope you enjoy your new routine and path!! I agree with you, this group has been a TREMENDOUS help to me. Y'all keep me grounded whenever I freak out and I thank you for that!
Even though I'm in several cancer groups on Facebook, I've discovered it is the worst for info/advice. I swear it's just full of all of the "worst case scenarios" out there. I feel so bad for so many of the members…they've gone through so much. On the plus side, it makes me very thankful for my battle. I always say that even on my worst day someone has it WAY worse than I do.
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Hello ladies! It's great to see that we're all doing well and on our way back to normal.
Radiation girls... it will go by super fast. Hope everything keeps going well!
Since you're talking about the fear of recurrence and brain mets, something happened to me two weeks ago that made me realize that this fear is not, and will not be, easy for us… I woke up in the middle of the night, looked at the alarm clock as I always do, and I couldn't focus on the image—it was shifting. That had never happened to me before, and I got really scared. I spent the next day feeling dizzy and unwell. I still don’t know what it was, and last week I mentioned it to my oncologist. She told me I shouldn't be like this, that I'm taking Herceptin, which can cause dizziness and other effects, although side effects are not very common, and that dizziness is a "normal" thing. She also said that the probability of metastases is not high at all, despite my tumor being very large, grade 3, and having affected lymph nodes, thanks to the blessed Herceptin. She told me: your cancer was HER2+, so you don’t need be afraid! I asked if the fact that I had a PCR helps, and she said yes, but that even if I hadn’t had a PCR, I would be taking Kadcyla and would still have a low probability of mets.
So, ladies, stay strong—it’s normal to feel afraid, but we shouldn't always assume the worst. As for seeing terrible stories in Facebook groups and similar places, remember one thing: the people who share their struggles are the 5% who are not doing well. The other 95% who have been cured usually don’t stay in forums, Facebook groups, and similar spaces.
Have a nice weekend! 🌷
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@djschmidt1 I am sorry as well about you being forced into retirement but ditto what beekaycro said. I hope you enjoy it!!
@catarina_fm I sometimes feel a little lightheaded. I've usually chalked it up to a Phesgo SE and dehydration. I don't do well with drinking the water I need like I did when actually getting chemo. I pounded water then but having a hard time drinking enough now. I keep thinking how good I felt during that two month break of drugs from the end of chemo through surgery and recovery. By the time I started back with Phesgo and Radiation I felt really good, just in time for the SE's LOL.
I know once I am done with Phesgo, I think I will feel so much better energy wise.
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One of my onco's told me that hormone negative BC is very responsive to chemo. So we have two positives. Remember that HER2 used to be the one with the worst prognosis. The population of people on BC forums is skewed towards those with metastases, because they have the motivation to stay active. I have stayed around because of the Old Folks thread, I am 75.
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@mcbaker I agree about folks not staying active when things are well. And I know a few that I started with who were a bit ahead in treatment I don't see much out of. So that is a great sign!! I just had a friend diagnosed with HR and PR +, HER2-. I'm waiting to hear what her treatment plan looks like. I don't know a lot about that type of cancer honestly.
Glad you are still checking in and offering experience!!
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Thank you, gram.
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Hey ladies!! I hope everyone is doing well!! Seems quite on here and that's a good sign. Wanted to ask if anyone who did Phesgo alone in the last leg of treatment had any fluid buildup in the legs. I had edema issues during chemo and that subsided in the drug break before and after surgery (for me that was around 2 months). I started back on Phesgo and the beginning of radiation about the same time. I did PT for breast swelling around that time also. I seemed to do fine with leg swelling from the time chemo ended and right after radiation ended. About 3-4 weeks after ending PT and radiation I seemed to notice minor leg swelling. Now with only 3 Phesgo shots left, I feel like I've had a bit more and to the point I've noticed weight gain. I go for a Phesgo shot tomorrow and plan to address this but wondered if anyone else has had this issue and what was done. Because I still have breast swelling, skin thickening and stiffness I've thought about asking for another period of PT. Thoughts or insight??
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Hello ladies, I hope you're all doing well!
@grammie2 I’m not speaking from personal experience (and I'm only taking Herceptin, not Phesgo), but now that you mention it, I remembered a lady I met during radiotherapy who complained a lot about swollen legs and arms. She even showed me the marks on her legs caused by the seams of her clothing (and she had to wear looser clothing). She was also only taking Herceptin, like me, so maybe it was related to that. Her oncologist ordered more heart exams to check if there was any issue related to it but mentioned that fluid retention is a common side effect… You have regular heart monitoring, right?
You should definitely ask for another PT session! I’m sure he’ll know what to do and can help you. And I would try to request it as soon as possible because you still have 3 shots left to finish the treatment, and I think that if you don’t do anything, it could get worse.
Good luck! I’m sure you’ll get back to normal. Treatments really take a toll on our bodies, but we will recover 💪✨
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@catarina_fm yes, just had my required ECHO and all was fine. My MO agreed that it most likely a Phesgo SE and that it will resolve once I've completed them. Which brings me to a question I thought about after I left her yesterday. How many total Phesgo injections? I've read 17, but up to 18 for our type and plan. 17 is how many I will have once I get the last two. Just curious.
She also did a physical exam of my radiated breast and said the thickening was from radiation, fat necrosis. She said to try massaging the area often and keep using the creams. I started doing that about a week ago and I think there is improvement.
I hope everyone is doing well and geared up for a great weekend!! I have no big plans but super excited to have two non work days LOL!!!
Hugs!!!
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@grammie2 I also think it's a side effect of Phesgo and that it will pass. I'm only taking Herceptin now, but it's a total of 17 doses (I still have 13 to go). Is it the same with Phesgo? Maybe!
My breast "shrunk" during radiation, but now that it's been a month and a half, it looks normal again, even in appearance. I still have some hard areas and know I need to massage more, but I have to admit that it feels a bit strange to do the massages, and it hurts a little.
I’m still applying moisturizer on my breast- in fact, I’ve been trying to apply moisturizer every day after my shower because I feel like my skin became very dry after chemotherapy.
My hair is still growing at a slower rate than most women’s, but I think it has improved a bit since I started applying a few drops to my scalp. My eyebrows and eyelashes are still very weak.
I’ve considered taking collagen and biotin, but I don’t want to take anything that might interfere with Herceptin. There are some hair and nail gummies that contain biotin—I don’t think they would interfere with anything, and maybe they could give my hair growth and nail health a little boost. Do any of you take any supplements?
Wishing you all a great weekend! Here in Western Europe, we're being affected by a storm (which is quite unusual here), so I think the weekend will be rainy and windy 🙄
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@grammie2 I would definitely ask for more PT. In the meantime, there are some YouTube videos by Cancer Rehab PT. She shows how to do different lymphatic drainage massages. My PT told me to do the one for the right arm since that's the one my nodes were removed from. She also has full body, legs, etc.
Kadcyla is being SO nice to me…knock on wood! I've only had nausea and an achey forehead the day of or after treatment. Radiation is going well, although I'm getting red right after treatment. I'm applying Calendula cream right after and before bed, then using AquaPhor, Aloe gel, and a skin therapy oil in between. I've noticed I get super stiff after radiation, so I'm doing my PT exercises before and after treatment. I'm happy to say I can grab on to my hair! lol - The hubs thinks it's going to come out if I pull too hard. I never even realized I missed feeling it like that…can't wait until I can run my fingers through it. My eyelashes are coming in nicely, but I think that's because one of my eye pressure drops has a side effect of making your lashes grow. My eyebrows are slowly coming back. However, the hair on my legs is growing faster than ever before. And the facial hair, too! So bizarre.
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@beekaycro24 you're doing well by doing the exercises! They really help A LOT, and if you do a little every day, you'll finish radiotherapy in great shape.
And… It's true, I've already had to shave my legs twice, but my hair is growing so slowly! So unfair 😆
I also have some hairs on the sides of my face, and since I'm brunette, they’re very noticeable. The doctor said I can't use wax or bleach because the treatments make the skin very sensitive. So I think I'll try threading—I’ve never done it before, but it seems like my only option since I don’t want to shave.
From what I've heard, you only need to remove these hairs once, and they won’t grow back!
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My MO actually said biotin and the skin, hair, nail vitamins are ok during Phesgo. They just didn't want me to use anything during radiation. I have gummies that I've started. And she actually told me I could use minoxidil or like Rogaine. But my understanding is that if I start those, it would be forever or I would lose any hair that grew. Ugh. Mine is very very thin.
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I would ask for more PT. In the meantime, there are some YouTube videos by CancerRehab PT that shows you how to do lymphatic massages to reduce swelling. She has them for full body, or just legs or arms. My PT actually showed me the one for the right arm since that's the one that had nodes removed. She's encouraged me to do it at home. They're super easy to do.
I'm happy to say Kadcyla is being nice to me! I completed treatment #2 on Wednesday and again only had a bit of nausea and achey forehead. I had even done a radiation treatment right before my infusion. My 30 minute pre-med bag has Kytril, Benadryl, Pepcid, Dexamethasone, Ativan, and Epinephren. The Dexamethasone wires me up so bad. I barely slept Wednesday night, but got caught up on my sleep last night. Radiation is going well…12/30 complete! My skin get red right after treatment, but I apply my creams to it before leaving the center and the redness is usually gone by mid-afternoon. I'm still able to stop and go walk for a mile on my way home.
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Thanks @beekaycro24 ! I will check those out!
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Catarina - sorry to be the bearer of bad news, but the hair on your face will continue grow as you get older. Not necessarily related to cancer. I've been having electrolysis several times a year for 20+ years. Maybe not the same follicle, but there are always more. She has urged me not to pluck since it stimulates more growth (which of course I did for years). Think of grannys with chin hair.
If you continue to have swelling, ask your onco to recommend a lymphadema therapist. I ended up with hard swollen areas after radiation and my rad onc diagnosed LE. I've learned all the tricks after 10 years. I usually manage it pretty well, but once a year I go in for 8 sessions of LEPT.
The good news is that I'm 12 years past the second surgery for recurrent BC and doing fine.
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Hey all! So who all's MO has been doing the blood test CA 15-3? I went last Thursday for my 3rd to last Phesgo and had an alert for test results. Standard because they always do labs before the shot. But this time I had the tumor marker blood test result. First for me. Mine was fine but I wonder why it wasn't done at diagnosis??
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Grammie: I had Cancer Antigen blood tests done during my first diagnosis & after surgery, but CA 27-29 instead of CA 15-3. Since my recurrence in 2013 they do the CA 27-29 every year.
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@minustwo that's interesting. I had to "google" the difference. Sounds like the CA 27-29 might be more accurate?? I wonder if I can request both? Curious what the other ladies on here say their MO does. Thanks!!!
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Hi all! Just catching up - spent past week in st Martin beach vacation! Sooooo nice to feel the 🌞!
I was wondering about the cancer antigen testing too! My MO did not recommend it for me, said it wasn't accurate for early stage...and that doesn't really change management. Kind of confusing to me but I'm just going with the flow. Trying to put my fears of possibile future recurrence aside. Thank u to those with the reassuring words of advice!
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