ER-, PR-, Her2+ Roll call
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Hello girls, it's so good to hear from you!
Regarding the tumour markers, my doctor also says that more important than the numbers themselves is whether there's a change in the trend. My value was high before treatment, then it dropped and has remained stable. If there’s any change (hopefully not!), further tests are needed.@chocomousse I hope your bloodwork improves so you can start treatment soon… The sooner you start, the sooner you’ll finish. Good luck!
@grammie2 that’s wonderful — you’re really in the final stretch, I’m so happy for you! I think once you finish Phesgo, your digestive system will start to recover. It might take a few months, but you’ll get better, you’ll see. I feel like my stomach is back to normal, but I’m only on Herceptin now, not Phesgo.
I’m getting my port removed on June 7 and I’m really scared. It was put in with only local anaesthesia and it was awful — I felt everything — and I already know it’ll be removed with just local anaesthesia too. I just hope it’s over quickly. I’ll let you know how it goes.
Today I had a dose of Herceptin and tomorrow I’m travelling to visit my sister in Denmark. We’ll do a few small trips around there. It’s the first time I’m leaving the country since the diagnosis — I hope it all goes well.
A big hug to you all and good luck with your treatments!0 -
I started drinking Activia Daily Probiotic shakes. It says to drink two/day, which I did for the first week. Now I just drink one a day,usually on an empty stomach. For bloating, I use Gas-X. I believe you can take 4 in a 24-hour period. They worked wonders for me! It also help regulate your poop, too.
I go for #4 Kadcyla tomorrow. I'm hoping I'll get to get it. I have this very annoying cough and my elecrolytes are all messed up. I will randomly just run a small temp and have the chills constantly. I have felt like total crap the last couple of weeks…no energy whatsoever and I'm sleeping SO much! I'm falling asleep on the couch around 8:30, wake up around 11:00 to go to bed, brush my teeth and I crash out right away. I sometimes sleep until 7:00/8:00 in the morning. It's so unlike me. My radiation nurse did say I will probably get hit with fatigue and it should improve 4-6 weeks after stopping radiation (which was on 4/30). I didn't really believe her at the time, but am now thinking she knows what she's talking about. I'm hoping this cough is not pneumonitis as that will delay my treatment a couple of weeks. Y'all say a quick prayer for me! Also, I've developed cording in my right arm…yay! The hits are just coming and coming. The good news…my PT appointments are the best hour long massages…lol!
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@catarina_fm that is so cool you are getting to visit your sister!! I hope you have a wonderful trip!! I can't imagine having the port installed with only local!! I'm still confused as to why they do it in the US in an outpatient surgery setting but take it out in a doctors office!!
@beekaycro24 so sorry you are feeling bad!! Radiation was a zapper for me!! And glad you are getting PT which they should be able to help with the cording! I am really bad about doing stuff on my own until it starts being aggravating! I hate the thick section that developed after radiation and hoping it doesn't cause concerns during my mammogram. Both the MO and radiation followup called it thickening of the skin from radiation.
Love and hugs to everyone!!!
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@beekaycro24 I hope your Kadcyla treatment doesn’t get postponed and that you start feeling better! I'm rooting for you! I’ve been dealing with a lot of rhinitis — it goes away when I take antihistamines. Take care of yourself! Radiotherapy didn’t make me feel tired, but I also noticed some thickening of the skin, and it feels like my ribs hurt, but only when I press on them. My breast became sore and firm, and if I go a few days without properly stretching my arm, I start having trouble moving it. I only have a physiotherapy appointment in August, so until then I really have to keep doing exercises to make sure my arm doesn’t lose mobility. I wish I knew when our irradiated area will go back to normal!
@grammie2 thank you! It’ll feel really good to get away for a few days, and this time I’m visiting some new places, so I’m excited. Yes, getting the port placed was truly traumatic for me 😭 For the doctors it’s something super simple, but for me it was terrible. I still remember clearly the feeling of the anesthetic injection in my neck. Horrible. I believe removal is simpler, but even so, I’d rather be sedated.
Take care, all of you!
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Great news! My onc didn't seem too concerned about my cough and said nothing is showing weird in my bloodwork. He didn't hear anything unusual in my lungs, either. I may have just been fighting off a cold. He didn't think the fevers were too concerning either, thanks to my bloodwork results. I could have postponed today's treatment to next week, but I just want to get them over with. SO many to do! lol
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@beekaycro24 that is great news! And yes, I am sure you want to get them done! Are those every 3 weeks? If the fever was low grade, could it be seasonal allergies? I had never heard of fever with allergies until a friend told me she does. Pollen here in VA is bad!
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@grammie2 Idk…fever is one of the SEs of Kadcyla, as is a cough. Surprisingly, my white blood cell and platelets were in the normal range after being low the last two times. I think that's why my onc wasn't too concerned. Yes, Kadcyla is every 3 weeks. I'm trying not to look ahead because my last one is due in February, 2026 which seems SO far away!! We've had so much rain here, that a lot of the pine pollen hasn't shown up yet. I'm also thinking my fatigue is also due to the fact that I haven't been able to go walk, due to all of the rain. Sunshine and movement are good for my soul.
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Hey girls, this year I’ve been really struggling with allergies — the pollen levels have been crazy high! It’s been awful, I’m constantly coughing and sneezing, and my nose is all sore from blowing it so much. Antihistamines help a lot. I was avoiding them, but the nurse told me it’s totally fine to take them, they don’t interfere with Herceptin.
I’ve had better days… I’m in Copenhagen now, so let’s see if a change of air helps!
@beekaycro24 I honestly think not going out for walks doesn’t help either — I really feel the difference. We had a few days of heavy rain and I couldn’t leave the house, and I felt totally drained and just didn’t want to do anything.
But the most important thing now is that you take time to rest and heal — I’m cheering you on! You’ll get better, for sure 😊
It’s cherry and strawberry season now, so eat loads of fruit — vitamins really give the immune system a boost. They help more than we think!
Wishing lots of health to all of you!
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You ladies are making me feel really guilty about not exercising! I think after radiation, I was so exhausted by the time I worked and drove an hour each way for radiation, I just gave up. I know I would feel better, but have I got back at it yet?? NO!! Shame on me! And I have an elliptical in the basement for rainy days so no excuse whatsoever. Thank yall for the reminder about how much better you feel. Gonna get to moving!!! Hugs!!
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Don't feel bad — the hardest part is just getting started, and you're right on time! Exercise is one of the best weapons against cancer, and I think you should begin, slowly, and build a routine. Sometimes it's hard for me too, but I do it anyway, and the feeling afterwards is amazing. Honestly, when I go days without moving much, that’s when I feel the worst and most tired. It seems contradictory, but exercising actually gives you energy — and health!🥰
You’ve got this! Start slow and you’ll see — you’ll become a fan in no time 😊🌷
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Thank you @catarina_fm ! I am working on a plan now. I think with my last Phesgo I am feeling a little scared. I don't know what the plan is now and I hope to find this out tomorrow at my last Phesgo shot. I know I have the upcoming mammo, but not having the comfort of the bloodwork and hands-on that comes with the every 3 weeks shot I am a tad worried. I don't know what happens now. It's a little scary with the normal concerns of recurrence and the "how will I know". The comfort of those every 3 weeks may be about to end. Sorry….I'm rambling my thoughts out for everyone to see.
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@grammie2 - All of that sounds like a good reason to listen to your favorite music while out walking. Don't think of it as "exercise". Think of it as "me time" or "get out and breathe time". Follow it up with a picnic, or just sitting on a bench people watching. It doesn't have to be long, you don't have to go far. You can stop and chill whenever you want. Find a place you really love. You have so much pressure on you from your cancer battle. You don't need any more. I can't wait to be where you are today!
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Ladies, in case you weren't aware, the Y has a program for cancer survivors where you have group personal training for 12 weeks free of charge called Livestrong. Your oncologist has to sign off on it. Ive been doing it for two weeks now and I love it. Check it out.
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@grammie2 congratulations on finishing the treatment! 🥰 Best of luck for your last Phesgo. I understand the fear — I think it’s completely normal — but you’ll have an appointment with the oncologist every three months (at least that’s how it is here). Even without testing tumor markers, I believe doctors stay alert if there are any strange symptoms. But we shouldn’t be afraid, girls — I truly believe we’re all cancer-free now and that it won’t come back! 🙏
As for physical exercise: don’t think of it as something boring, but rather as something joyful as
@beekaycro24 says. Besides, it doesn’t have to take up much time.
@djschmidt1 I love the idea, but I believe I might not be able to access it in my case... The other ladies can take advantage of it! Still, I’ve already gotten into the habit of going for a walk every morning, and every other day I do around 20 minutes of strength training — something simple, nothing too elaborate.
Take care! 🌻
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yes @catarina_fm, I am pretty sure we don't have a Y outside the US. Apologies, I meant to mention for US based survivors.
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All good ideas ladies! Thank you! I am using this milestone as my "encouragement" to start walking. I live in a small rural town, so no Y. But I live on several acres and have plenty of nature walks I can do. So sharing this pic….I'm feeling good today and feeling more confident about the "no wig" look even though my hair is still really thin. Praying for changes now that Phesgo will be done!! Hugs ladies!!
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You look great! Funny short hair story…I was approaching my car after grocery shopping. A little old lady in the car parked next to me looked at me and said "I love your hair! I wish I had the courage to go that short!" I laughed and said thank you. I then told her why my hair was so short, but was actually surprised by how much I actually enjoyed it. She just smiled and told me it looked good on me.
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Thank you @beekaycro24 ! And that is funny!! Yours looks to have come back thick!
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@grammie2 You look amazing! I'm being completely honest — your hair looks great, and it even gives me hope that mine will look like that when I finish Herceptin 🥰
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Thank you @catarina_fm !! I was so excited to get that last dose of Phesgo and pray that all of the lingering SE's will go away!! I know the edema will ramp up over the next week. It always does the week after the shot. But hoping with Phesgo slowly leaving things will start to become more normal!!
I met with the assistant to my MO. She assured me that they will continue to monitor me and I will meet with my MO after the results of my mammo comes in. That gave me comfort because they have been wonderful in taking care of me through the treatment. I will find out the exact plan of care post all treatment when I meet with her. But from what I gathered it will be at least every 3 months for a year as long as my mammo comes back good and without issues. I'm a little anxious about the mammo to be honest. That mean boob has a seroma and thick skin. And it's still a tad sore with swelling and such. Should be fun having it smooshed for the mammo LOL.
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@grammie2 u look fabulous with short hair! Looks very hip, modern, cool! Regarding keeping stress/worries at bay, I do try to do some activity/exercise/yoga for at least 20 minutes a day. While walking the dog, I try a mindfulness technique 5-4-3-2-1. Name 5 things that you see, 4 things that you hear, 3 things that you are touching, 2 smells, 1 taste (even if u don't taste anything!). I find that helps especially if I focus on nature around me.
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@snm thank you! It really takes some getting use to catching glimpses of your head passing by something and seeing your reflection! I am praying so hard that it will thicken up once Phesgo starts making it's exit from my system! And that is awesome advice!!! I'm going to start out slow walking my driveway. We have mapped it with the car so I have a good idea of the distance. I am starting out slowly. Love the 5 4 3 2 1 idea!!! That is awesome!!
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@grammie2 I start the infusions next week.
Seems that one of the things that Herceptin and Perjeta do is stimulate the bodies own immune system to attack the cancer so I've been looking into a product called BioBran MGN3 which helps boost production of immune cells to go after the cancer too, complimenting the H & P.
"The review found that Biobran was safe to use. It said that people could use Biobran as complementary immune therapy. The researchers said that it could help to reduce side effects. It could also improve treatment outcomes and improve long-term survival." You can read about it here: https://www.cancerresearchuk.org/about-cancer/treatment/complementary-alternative-therapies/individual-therapies/biobran-mgn3?_gl=1*15lhw4b*_gcl_au*MTgwNTIwMDgyOC4xNzQ1ODIzOTc2*_ga*MTc5ODk5Mjc1NC4xNzQ1ODIzOTc2*_ga_58736Z2GNN*czE3NDc2MTEyODUkbzckZzEkdDE3NDc2MTEyOTYkajQ5JGwwJGgwJGRMb3h6WVF6TXBzZTdOOGNRWXRlUENNYlJnYXZYaXVrWnln
I'm also going to start taking Turkey Tail Mushroom supplements.
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@chocomousse that is very interesting! I'm gonna read more about this for sure!! I guess I am feeling a little "naked" now that the protocol treatment is ending. I've felt the treatment as a cushion which aided in killing and preventing the HER2 cells. But now that I am ending that, I'm worried it will jump back into action!! Good luck as you start your infusions!! I'm in the midst of my Phesgo SE's right now and so excited that this is the last time I will experience them. And look forward to them fully going away!!! I would always feel pretty good and most SE's at bay just in time for the shot again! Hoping week 4 after this last Phesgo will be great!!
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@grammie2 I also feel very naked since having completed immunotherapy in February. Had my first bloodwork draw for tumor markers last week, followup with ONC Tuesday (a little anxious). I have to say I still have some after effects from chemo/immunotherapy:
- Still have a tender spot on my head much like it felt when I was losing my hair.
- Still have tenderness at my surgery sites (a year later)
- Still have minor finger tip numbness and my feet just hurt or have numb toes most days.
- I have a very odd reaction on my skin when I spend any time in the heat or when I work up a sweat (pins and needles feeling on my skin)
Looks like I may be left with some stuff, on top of being concerned with a recurrence. I guess this is my “new normal”.
We’ll see what my doc says Tuesday. All in all I am doing great but not 100% normal (booooo).
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