ER-, PR-, Her2+ Roll call

@grammie2 yes, under the eyes, but in a completely absurd way, and my face got super swollen. And I also had slight swelling in my hands and arms. But, as I told you, this is rare to happen. So don’t worry! In any case, when I reduced the dose, it only took 2 or 3 days to go back to normal. Good luck to you! I’m sure your hair will still improve a lot, the improvement you see after 2 months is very slight compared to 6 months.

Hello everyone

My sister is currently receiving her first infusion and is in very good spirits. Now, if you could tell me the expected daily effects of the first of her six chemotherapy cycles, I would be able to follow them. The doctor gave her an injection to be given in 72 hours... I think it's for white blood cells. I told her to suck on ice, and she's using gloves and socks for her hands and feet. I told her to drink plenty of water and to move around when she feels well. I also told her to rest more between days 3-7, and to eat small amounts of food, like dried beans and meat, even if she doesn't feel like it.I would appreciate it if you could share any thoughts you have with me.

I love you all.

@myoldersister You are giving her great advice! And yes, the injection that you get after the chemo session is for immunity building. I was told it could cause bone pain and was advised to take Claritin (strange an allergy drug can do this, but I used it and had minimal pain). I had mouth sores with my first two, but none of the other. My MO prescribed Magic Mouthwash which was a lifesaver! Everyone is different. If she has stomach issues, take Immodium before every meal. It was a learning process for me, but I generally had those issue around day 4-7 post treatment. So I would start taking Immodium before every meal starting day 4 and do that until about day 7. I didn't have issues with nausea until about treatment #4. So I then had to start taking the nausea meds. Never actually was sick…just that feeling which is horrible. Please ask for advice on any SE's she is experiencing. I'm sure one of us here had them too and might be able to help. Hugs to you both!!

@grammie2 hi there, the discomfort is more noticeable in evenings while at rest or when I move position in bed and sometimes with certain yoga moves and stretches. There are times during day I don't notice it. It's deeper than the submuscle implant almost like an ache on upper part of chest. I've read that pain after submuscle implants can happen from scarred tissue or from pec muscle being stretched over implant etc. I'm hoping it is just that. It would be really weird to have a normal breast mri and normal CT chest but a cancer recurrence on PET? I'm thinking maybe it is inflammation from the implant.. not really sure just hoping it will go away with time. 🙏 That all will be ok.

@myoldersister is it good to hear she is not feeling too bad. During my chemo education I was given a list of medicine that I could buy over the counter for different side effects. One was for the metallic taste and was called Lactoferrin. I had to order it from Amazon because I couldn't find it locally. I took it through the entire treatment and never had a lot of taste issues. I did have texture issues where things would feel like mush in my mouth. You could ask her oncologist if it would be allowed.

It was hard trying to stay away from germs. I still worked but limited my contact with people as much as possible. I went to an outdoor wedding and even went on a vacation towards the end of treatment. My boys and family came home to visit and I spent time with my grandkids. My DIL caught Covid on the plane and my husband also got sick, but I never caught it. I think the immune building drugs they give really make a difference. I got Neulasta. Hugs to you and your sister!! Keep us posted!

Update- Hi all! Just wanted to let you know that I had a Pet scan for my ongoing chest wall pain x6 months and it was all clear!! No cancer seen! I'm relieved by that but wonder why I'm having discomfort with my submuscle breast implant. I have concluded that my pec muscle is super tight and maybe that is pulling on the rib at breastbone. So I'm back to doing pectoralis stretches to see if it improves. No sign of capsular contraction to warrant surgery per plastics. Guess it is something to live with..oh well. Time will tell..

Take care everyone!

@snm so glad your pet scan was all clear. I still have pain on my surgery side and my armpit so I feel you.

@djschmidt1 thanks everyone! I bought a backpod to help stretch my pecs- will see how that works out!

@myoldersister I'm so sorry that your sister and your whole family have to go through this. Emotionally exhausting I'm sure. Hold steady as the treatments are solid and the body finds a way to rebound with time.

I'm new to the discussion. 70 yrs. young. Just relocated 4 years ago to the southeast. All new doctors.

3 Biopsies said DCIS high grade 3. Had a right side lumpectomy May 4th and they found IDC as well. No nodes were taken because DCIS was the diagnosis going into surgery (love my new surgeon). Node surgery will be June 1st. My surgeon said I'm getting chemo..ugh! I'll see the oncologist after node results. I have stayed on top of my mammo screenings due to dense breasts. I wonder how this got so far. MRI of breasts showed more than mammo!

So far…I have IDC pT1c High grade 3 ER/PR - and Her2+ Ki67:81-90% Tumor 16mm

I had DCIS (same markers) in 2009 Had a lumpectomy and whole breast radiation on left side. It's been stable since. I did check with my oncologist from that surgery to see if the treatment being recommended for my right side is correct. I trust her explicitly.

I think only 5% of breast tumors present with an ER/PR- and Her2+ marker. I could be wrong.

Hi everyone!! Just checking in and excited to give my recent mammo update. This was my third, every 6 month test. No changes and they released me to every 12 months. I'm both really excited and a bit anxious. I held onto my chemo port saying if I got two years post chemo I would have it removed. I had an appt scheduled with my surgeon in late September so I called and they added port removal to my visit. To my surprise it really doesn't change much. They just said to come 15 minutes earlier. I'm a chicken and really dreading this procedure! I'm like, yall knocked me out to put it in, but gonna take it out in the office??? I know it happens all of the time, but I really don't want to see or feel anything!!!!

For you new folks, I will try to check in more often and please tag me so I will see your posts. This is a journey and no matter where we are in this journey, we all want to help in any way we can. Hugs all!!!

Hello everyone! I've been a bit absent lately. The truth is that with work and "normal" life, I'm always busy, but I think about you often and hope you're all doing great!

@snm I was reading what you wrote. It's wonderful that the PET scan didn't show anything! I have a hard area in my breast because of the radiotherapy, with some small lumps (the mammogram showed that they were after-effects of the radiation treatment). They tell me to massage it, but the truth is that sometimes, when I try to massage it, it becomes inflamed and hurts a lot. I think, unfortunately, we're going to have to live with some aches and pains... but as long as that's all it is!

@grammie2 how is your hair situation going? I'm very happy because last week I was finally able to tie my hair up with an elastic band to go to my gym classes. It was the first time it had grown long enough to tie back (with a lot of hair clips to help), and it felt amazing. Minoxidil helped me a lot with density, but I still have some thin patches that I try to hide with a headband. It works really well, though! As for having your port removed, don't be afraid. The removal is much simpler than the insertion (both of mine were done as outpatient procedures). Honestly, I didn't feel a thing during the removal. It takes about five minutes, and this time you won't need the anaesthetic injection in your neck, which bothered me a lot when the port was inserted. You'll only have local anaesthetic around the port site, and you can barely feel it. Trust me, it's nothing to worry about, I promise! It will be a year since mine was removed, and I feel much better without it 😍

@myoldersister how is your sister going? In the meantime, she has already completed a big part of the chemotherapy, and there’s less and less left until she is free of it.

@stellabys I’m sorry you’re going through this again. You will probably need chemotherapy, yes, HER2+ is no joke, but remember that with Herceptin it is a very treatable type of cancer! Chemotherapy isn’t easy, but it goes by quickly. You’re going to be okay. Pure HER2+ is rarer than triple negative, but it does exist (we are proof of that). Unfortunately, no imaging diagnostic method is perfect. That is why an ultrasound is usually done together with a mammogram. MRI is an expensive method and is only done in certain situations, but it is the best. If you have any questions, just let us know! I hope everything goes well!

@catarina_fm good to hear from you! How exciting about your hair!! I started oral minoxidil April 9th. I see some new growth in a few areas but it is slow. My hair is still growing slow in length as well. But the dermatologist said to be patient and didn't schedule me to come back in for 6 months.

@stellabys good for you seeing the positive!! That is so very helpful!! Chemo is no fun, but the way they help treat side effects are amazing. So many things that will help minimize the ones you may experience. I did do Perjeta and was able to tolerate it pretty well. The first two treatments (TCHP) was a struggle learning what to take and when. As soon as I learned what days were my worst for stomach issues, I started taking Immodium before every meal and that helped a ton. Will say a prayer for the node results!!! Keep us posted!

@myoldersister thank you!! I'm sorry to hear your sister is having more issues with #3. I learned what days I would normally start having diarrhea and would start taking Immodium before each meal/snack. That seemed to work for me. If it did happen, I would take an additional dose right after. Only had to take extra a couple of times. As far as the taste, I didn't have a lot of trouble. I loved sweat tea prior to chemo. During, I couldn't stand the taste of it. I did take an over the counter that my oncologist had on my list (a list of possible SE's and recommended OTC meds). The one I took was called Lactoferrin to help prevent the metallic taste chemo can cause. I started taking it daily from day one and other than tea, I was good. I did have texture issues after each treatment (started around day 4-8). Bread might feel like mush for example.

@stellabys I am glad you updated us! And I love your attitude about your hair. If one thing that will get you through this is to always try to look on the bright side!! Just my thought on the icing for hands and feet. You only have to do it during "T" so that's helpful. I did do it, but did have mild neuropathy in my feet and fingers. The hands recovered quickly but the feet has taken a bit longer. And to be honest, I didn't wear them the whole time during #5 and #6. I didn't cold cap and I am one of those "lucky" ones whose hair did not come back great. But, I have started oral minoxidil and I can now see new hair growing. Just takes a long time for results.

I'm so glad you have a well informed MO! And Herceptin has been our "saving grace" here in HER2 land. Curious why you are not getting Perjeta? Because of not having node involvement? I always find the changes in treatment plans interesting. Thank goodness for all of the ongoing studies!

Generally if you chose to have a lumpectomy, you are opting for radiation. I chose a mastectomy so I would not have radiation.

When my hair started falling out, I went to the barbershop and had my head shaved. Later, I was ecstatic with my curly locks which weren't a perm. Sad when they grew out. My hair is thin now. I even make my own scrunchies because everything else falls out. I am starting to make silk scrunchies because they are easier on my hair. I have a lot of silk scraps form making clothing out of recycled saris from India. But at least I am not showing a sparse part. I treat my hair like the gift it is for a post-menopausal woman; air dry and no chemicals and gentle shampoo.

My sister; try cream soups, including butternut squash soup. Emphasize texture rather than taste. If she has problems with bread, try whole wheat or multi-grain.