TRIPLE POSITIVE GROUP

Nsbrown54

Hi ElaineTherese - I was surprised by my attack, especially since my liver enzymes have been consistently normal in blood work. For me, pancreatitis pain is the worst pain I’ve ever experienced, even worse than labor and appendicitis. 😱

SpecialK - Thank you for the compliment. 😀

Taco1946

MsMurphy - I had both ovaries and uterus removed at age 37 because I had polycystic ovaries. I have never been sorry although wonder now about the years of HRT. One less place to worry about cancer is my feeling at this point. Will be interested in MO's response but I don't understand why one wouldn't take the ovaries as well. Ovarian cancer is so hard to detect until late.

Beesy_The_Other_One

Nsbrown, like SpecialK, I noticed your new "do" right away! It looks great! I'm sorry you're in pain, though, and hope you feel better soon.

Photogirl81

Hi wonderful ladies,

It’s been quite a while since I last popped in, and even longer for writing. Maybe a few of you still remember me. I was happy to see a few names from years before still doing fine!

So I decided to do a quick update about how I feel nowadays, maybe it will encourage some of you. 4.5 years after diagnosis life is great and my health seems to be the best it’s ever been. After shaking off that terrible pain in my feet (no idea how, it just stopped), exactly two and a half years ago I changed my lifestyle a bit. I started exercising every single day and lost 54 pounds. I still exercise every day, but can’t seem to get rid of the last 12 pounds...

I feel much better now. I went to school to become a beauty stylist (lashes, makeup, skincare and dressing for your body), so now it’s my love project to help women feel amazing. Photography is still my main job and passion, and I can combine it with my new skills.

My two beautiful fur babies are also well and one cannot ask for better cats. I am grateful every day to have them. They helped me so much, and still help me every day.

Maybe you remember that my mum also had cancer (ovarian). She was given 5-6 years tops, if she was lucky... but she fought for 11 years. And honestly, if her first doctors had been better, I think she could have fought for even longer. I’ve lost her a bit over two years ago. When I saw that her battle was coming to an end, I started exercising on purpose: to help me cope with stress and heartbreak. And it did, maybe that’s why I’m still sticking to that routine.

I have read about the divorce and depression. I know it is tough, can’t even imagine how tough. But maybe exercising could help: it really turns your mind off and the endorphins also help. It could be worth a try.

Oh well, I have written way too much, sorry! Last bit of fun fact: I am still on Tamoxifen (1 more year) and got my last Lucrin shot a year ago. My period hasn’t come back yet (doc said it won’t as long as I am on Tamoxifen). Well, I got my Covid19 Pfizer shot... and the very next day I was menstruating. It only lasted for 3 days, and we have no idea whether it was a “one time thing” or it started something for real in my body... but I was so surprised after over 4 years to see my body work...

Hugs to you all, and just again, thank you for being there for me when I first found this group. You helped a lot.

Love,

Photogirl

Nsbrown54

So glad to hear good news Photogirl81 and that you're feeling good.

AnnaTheBrave

Hello, all, I have a radiation question and I thought I'd post here rather than the rad board in case my issues are related to my ongoing TP therapies.

I finished rad on March 1, and I handled it with relative ease. I had one area about 2" by 3" on my collarbone where the skin peeled, but otherwise I was relatively unscathed during the course itself. However, that area, which appears completely healed and normal, continues to burn and itch if anything touches it. It comes and goes in intensity. I have slathered on Aquaphor multiple times a day and it does not appear dry. I can feel that one area feels smoother, so maybe it's still dry, but the symptoms I'm experiencing are severe and seem odd given the skin's normal appearance. When I cannot resist scratching it (while asleep, for instance), as soon as I stop scratching I get these deep shooting painful itch sensations. I'm still getting Herceptin/Perjeta, I started Trelstar on March 8, and I started aromasin at the end of April and the symptoms do not seem to be tied to any of these dates (but I know some people very rarely can have a late rxn to rads triggered by another substance, so I mention it here in case anyone thinks maybe that's what's going on). Also since radiation, I’ve had lymphedema in the treated breast. Had four lymph nodes removed with lumpectomy. Not sure if it’s radiation-induced lymphedema or it’s its own thing, but just throwing that out there

What fresh hell is this??? Has anyone experienced it? I called my RO's office a couple weeks agoand their initial reaction was that it had been so long since I finished rad that it probably wasn't related. That response pissed me off so much that I've been reluctant to call back bc I'm so sick of being told I'm wrong about my own body. If I had an idea of what might be happening or what might help, then maybe I could suggest something to them and they might be more willing to hear it. Anyone? Thank you so much for your advice.

ElaineTherese

That's odd about your RO's office. My RO believes that radiation can cause long-term damage. That's why he advised me to seriously take care of my skin during sunny weather, using sunscreen and wearing sun-blocking shirts at the pool, among other things. You might want to check with a dermatologist about getting something to stop the itch since your RO seems unhelpful. Good luck!

hapa

Anna - It could be nerves regenerating causing weird sensations. That's what I'd put my money on. Hopefully it just goes away eventually. I had weird itching every now and again for a long time after mastectomy and rads (honestly not sure which was the cause) but all's good now.

BeautifullyBroken4284

I didn’t think I’d be back here on this site after having a previous full response to chemo. That what when I started chemo in Feb 2017. Here it is 2021. Now I’m 37. Today I had my ultrasound done showing I have 2 masses. One is 1.5cm and the other is about 1/2 the size. The radiologist said we need to go a biopsy and said my BIRADS was 4.

This all started rolling so quickly last week. On Tuesday I met my oncologist virtually, Wednesday had blood work done and they always check my tumor markers that are now teetering on the top high side. So by Thursday I was pulled in for a physical exam where my oncologist found a lump on my left side not even my right side where my cancer originally started. Friday they did a brain mri which was clear. Today they did the ultrasound that wasn’t clear.

A boulder is rolling over me, I can’t move up, I’m going down a mountain I just fought so hard to climb!! How is this happening again! I hate cancer so much! I just hate it!!!!

Redcanoe

I am so sorry beautifullybroken. That sounds terrifying. Hopefully it is just a scare though. Maybe it is not cancer. The tumour markers are still in normal range, just the higher end? Did you have genetic testing?

morrigan_2575

I'm so sorry to hear you may have a recurrence.

Nsbrown54

I’m sorry you’ve had a reoccurrence BeautifullyBroken4284.

Redcanoe

how are you beautifullybroken? Thinking of you!

BeautifullyBroken4284

Hey there, Redcanoe! When I was initially diagnosed in 2017 yes they did genetic testing. However, I had NO genetic markers for breast cancer. Not either BRACA 1 or 2.

I’ve been praying and praying it’s just a scare. However my oncologist bless their heart don’t think it is... they said one of their biggest concerns is wether it’s the same breast cancer as before, or if it’s a different kind of breast cancer. I said to her we both know cancer doesn’t grow symmetrically, it grows in anyway it wants too. I said if it wasn’t cancer it would be perfectly symmetrical and not look like a seahorse. She goes that is very correct Jenn. I started crying and she said we’ll get through this together Jenn I promise. When they measured the mass, (as that is what they are now calling it.), on Friday 5/21 the mass had jumped from 1.5 to 1.82. It looks like a seahorse laying horizontally. (In 2017, my big tumor looked like an upside down tug boat.) They found that there’s not 2 there’s one large one and several smaller ones. They changed the BIRADS score from 4 to 4c after the ultrasound. I said that’s not good, that’s just not good at all.

My daughter’s godmother went with me to every appointment in the first time around. Now here we are not even at the 5 year mark doing it again. I looked at her right before they started the biopsy and I said Teri does this feel like a bad dream to you or is it just me?? She replied with, it’s not just you, I feel the same way and it’s feels like déjà vu yet it feels so surreal.

I’m forgot how sore a biopsy is. I think it was definitely partial denial to be honest.y entire left arm hurts from my arm pit right down to my ring and pinky fingers. It’s ridiculous. I’ve isn’t helping of course. I don’t dare to try heat. I’ve taken medications that should help that are not. The stupid mass was sore before they even did the biopsy too.

I already have made the choice that I won’t subject myself to chemo again. It almost killed me literally the first time around. I still deal with regular medical issues because of it. I can’t imagine what more chemo would do to my body.

The tumor marker was 2 points away from being too high, but keeping in mind it had jumped from only being around 7.4, to where it is now. I bet this all could have been caught sooner if it wasn’t for the stupid pandemic and being too high risk to go in and doing everything virtually. I’m so frustrated and pissed off and if I’m not pissed off im balling my eyes out.

It would make such a big difference if my oncologist wasn’t talking and convinced that it’s a reoccurrence. But hearing what I’m hearing from her makes it all that much more real. I haven’t been on anything since I finished chemo either in jan 2018, because everything they tried putting me on I had an allergic reaction too. The tamoxifen and another one that’s new that begins with an N. I feel like did I mess up some how when I should have done something different after chemo was over....

ElaineTherese

BeautifullyBroken,

I'm sorry to hear about your situation. Hope you get some definitive results from your biopsy soon! Now is not the time for regrets; we all make treatment decisions as best we can, given the circumstances. ((Hugs))

BigPeaches

BeautifullyBroken,

Just some encouragement, I am Stage IV and just passed my 3 year anniversary of my Metastatic diagnosis and am doing much better today. You can do it too! Hugs and love.

Redcanoe

I'm sorry beautifullybroken. I'm glad you have your daughters godmother with you. She sounds like a good friend.

SpecialK

beautifullybroken - so sorry you are in this situation, please let us know how things are going but know we are here thinking of you.

lago

Hey SpecialK you're still posting! Just want to say hello

SpecialK

lago - omg - hi!!!!! Yup - still here, lol! Good to see another OG though!

tld2017

Hi Ladies! My port is blocked by a fibrin sheath and I have to go in the day after tomorrow for a tpa infusion. I don't know what to expect and no one really explained anything other than it is a three-hour infusion, it's at my local hospital, and I'll need a driver. Has anyone here had this procedure done for a blocked port? Thank you in advance!

SpecialK

tld - I have not experienced this issue in the six years I had a port. I did use the search function and put in TPA and port blockage - got post from members that had a shorter TPA treatment though at the time of the blockage discovery. Here are links - maybe you can send a PM?

Look for the post from roofcat59, who has been active relatively recently and may get an email notification if sent a PM:

https://community.breastcancer.org/forum/69/topics/788735?page=225#post_4811278

Here is a second one from lostpup from last year, although not an active member:

https://community.breastcancer.org/forum/69/topics/877455?page=2#post_5590987

MsMurphy

Hi everyone,

I just got a call to schedule my 3rd echocardiogram today and the nurse said that my oncologist had also requested I be scheduled to see a cardio oncologist. While we discussed that I was due for an echo, he didn't mention the cardiologist. Is this common when on herceptin? It made me a little nervous as heart disease is a very big genetic risk in my family and my dad dying recently from heart failure. The oncologist hasn't seemed concerned about my previous echoes although chemo gave me severe anemia.

tld2017

I had the TPA infusion today and thought I'd just mention it here in case someone in the future is searching for info about it! It was a very simple procedure in the hospital's radiology department. Basically, in a nutshell, it was a three-hour infusion with clot-busting meds. It worked! They were able to get blood from the port. I felt a little light-headed for a few hours afterwards but it was all fine! Thanks, SpecialK, for your input - I am grateful!

tld2017

MsMurphy, I too had to get an echo done every few months throughout my Herceptin/Perjeta treatment. I did not see a cardio oncologist but maybe your onc suggested it due to your family history. I am so sorry about the loss of your Dad. I lost my Dad in January, so I understand your pain. I think if your onc did not express concern about your previous echos, he's probably just having you see the cardio oncologist to ease any concerns.

BigPeaches

MsMurphy, I would think they are just being careful due to your family history.

Nsbrown54

Has anyone else stopped perjeta after 6 treatments? I’ve completed 6 TCHP and 6 HP treatments. My oncologist had me skip treatment last cycle (due to side effects) and just gave me IV fluids and this time just gave me kajinti. The nurse practitioner said this would be my treatment regoing forward - just kajinti through January 2022. I know from seeing other posts that many countries don’t offer perjeta as part of treatment plan, depending on cancer.

I’m okay with this course of treatment and the logic behind the change. Just curious if others had this change as well.

ElaineTherese

Hi NSBrown!

After I finished chemo and surgery, I just did Herceptin for a year so I didn't continue with Perjeta during my adjuvant treatment. I'm still here, almost 7 years later.

BigPeaches

I'm stage iv so i'll be on Herceptin and Perjeta for as long as it works, three years so far.

LilyCh

"...Tamoxifen treated BC patients showed a reduced rate of hospitalization and strikingly no fatalities for COVID-19. In vitro experiments confirmed a protective role of tamoxifen while an increased susceptibility to SARS-CoV-2 infection of ER+ cells treated with fulvestrant was observed..."

https://www.researchsquare.com/article/rs-598923/v1