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De Novo Stage IV

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  • kbl
    kbl Member Posts: 2,637

    SeeQ, I had no idea it was that large. Ugh. Sounds like you’ll definitely be switching meds. I am grateful for your patience in teaching me about the liver. No matter how long we deal with it, there’s still so many unknowns. Please keep me posted. I’m camping Monday-Friday next week, and to my horror, there’s no cell service, so I won’t make the meeting Monday.

  • kbl
    kbl Member Posts: 2,637
    edited October 2023

    Deny123, that is bad they missed it three times. I can’t imagine.

    That’s a long time on a treatment, and to put up with the weirdness for a year, yikes. I hope you can either switch meds or get this one back on track. Have you been on the Xeloda as long or they added it later?

  • snow-drop
    snow-drop Member Posts: 517

    KBL, I'm sorry about the nausea. mine started day 10 right after taking the pill and in the following days also right after taking the pill but it was much milder. so I didn't need to take Zofran. those days I tried to avoid sitting as much as passible, walking around the kitchen for few minutes and definitely avoided lying down after taking the pill. if you take it with your lunch, the nauseous feeling shouldn't show up at breakfast the next day, Elacestrant stays in the body for upto 16 hours if fully absorbed. I say "fully absorbed" because medications are absorbed at about 60-75% not 100%, the percentage is even lower for vitamins which is about 30-40%. what I learned is that my digestion recently reacts to olive oil in salads, which I usually consume. Elacestrant gives me a sweet tooth which is unusual for me. it is trial and error until I adjust. when I take Elacestrant my entire stomach and belly bloat like a stiff balloon. cancer medications are strong and takes some time for us to get used to them.

    please report back on how you are doing, I hope this new med is easy on you. and more importantly I am happy for you that you had a nice time with your grandson and daughter, it must have charged your batteries and filled your heart with joy. these moments of happiness are precious and I hope they continue to bring you strength.

    Denny123, thanks for sharing your experience, and I am sorry for such a difficult procedure you went through. sending positive vibes your way for a good result on your upcoming scans. I hope they bring you peace of mind and no need for another biopsy. about the chill/ fever, have you been tested for covid? I had similar experience chills/ mild fever for a few days before suddenly getting a fever that led me to take one of those home-covid tests which turned out to be positive. please report back on how you are doing.

    seeq, enjoy your much needed vacation, I hope the results come back soon and good for the both of us.

    Harrow, how are you doing? I hope you find some clarity on all the medications, scans, doctor visits etc, at first it can feel overwhelming but you'll overcome it. if I recall correctly you might have mentioned you are from Alberta, it is one of my dream destinations to visit! especially because of the popular tv show that filming there, heartland is my favorite!

  • kbl
    kbl Member Posts: 2,637

    Thank you, Snow-drop. I didn’t have the nausea today, so just one day so far as of Day 5. It was awesome seeing my daughter and grandson, even if just for a few days. :) Please keep me posted how you’re doing as well.

  • denny123
    denny123 Member Posts: 1,435

    snow-drop…thanks! My ex had watched my 11-year-old grandson on a Wed, and I watched him on Thurs. Ex started to get sick on Sat, which means that he was probably contagious on Wed. Grandson had the sniffles, but he does have allergies. On Sunday, I started with a sore throat and congestion. That lasted for a few days. I took 2 expired Covid tests, and then a new one. And all were negative.

    So that could be the reason for the lung spot, although my onc didn't think so. My onc wasn't in yesterday when I went for my Herceptin, and I sent a message to the MO. Haven't heard back yet.

    I really don't want to wait for 2 more months for a scan, but it is up to the doctors, I guess.

  • jobbibo
    jobbibo Member Posts: 64

    Seeq - I hope you’re feeling better from the biopsy and able to enjoy your vacation! Hoping whatever the results are from the biopsy that they have a good plan in place. 

    Kbl - Glad to hear you’ve only had 1 day of nausea so far on the new meds I hope that continues for you. So happy to hear you got to visit your daughter and grandson. Have a great time camping! 

    Denny123 - So sorry you haven’t been feeling well and experiencing some weirdness with Herceptin. I agree I would struggle having to wait a couple of months for a follow up scan. I hope you feel better soon and that you hear back from your MO. 

    Snow-drop - I’m sorry you felt so unwell after your biopsy. I hope you’re feeling better now and that there’s a good plan in place following the biopsy. 

    Harrow - I hope you’re doing well as possible adjusting to everything. Thinking of you! 

    A lot to catch up on sorry if I missed anything but hope everyone is doing alright! 

    Life would be a lot easier right now if I hadn’t had an infected port a month ago. Since then I thought it was all well after an ER visit / 2 weeks of antibiotics, then the incision decided to open up. My surgeon removed it almost two weeks ago and I’m scheduled to get a new one put in on Thursday. Also found out the internal sutures never dissolved so said she’ll have to use a different method next time. But of course it couldn’t have just been that easy lol instead the stitches of the initial incision that should have healed up didn’t hold and it completely split open. Plus had an allergic reaction to the bandages I was wearing to cover it. So after seeing them again I’ve been packing the wound daily and on a steroid cream for the allergic reaction. Seeing the surgeon tomorrow to see how the wound is doing but from my perspective it doesn’t seem to be closing up anymore. Not sure what will happen there plus what will happen with the new one getting put in. I’ve contemplated just not getting a new one but I have awfully tiny veins and am usually left with 3-4 bruises every infusion since I’ve had it taken out, don’t think I can continue that way. Just really hoping my new one heals properly this time and I can just worry about treatment instead of constant wound care! 

  • denny123
    denny123 Member Posts: 1,435

    Bobbi Jo—thanks! I really hope that they can figure out what to do with your port! Mine has been in since 2003, so I am very lucky.

    And good luck to everyone else!

  • denny123
    denny123 Member Posts: 1,435

    kbl-I just saw that you asked me about Xeloda. I have been on it for almost 6 years. Fun times….

  • kbl
    kbl Member Posts: 2,637
    edited October 2023

    Jobibbo, thank you.

    That port issue sounds so painful. I hope they can close it up and get you to heal. Ouch.

    Denny123, no worries. Whew, that’s a long time on Xeloda. I’m glad it’s been working for you.

  • kbl
    kbl Member Posts: 2,637

    Quick reminder. I’m going camping this week, and there’s zero cell service. I am probably going to go stir crazy. Lol.

  • denny123
    denny123 Member Posts: 1,435

    kbl-have fun! No cell service???? ugh. LOL

  • kbl
    kbl Member Posts: 2,637

    Thank you, Denny123. I know. I’m finding I may have an addiction since I’m nervous. It’s not so much the phone as it is not being able to have contact with my daughter. Lol. Shes an adult, but I text her every few days. Lol.

  • harrow
    harrow Member Posts: 38

    Hi everyone, I hope you had a nice weekend.

    @seeq I hope you’re feeling better from your biopsy. I know you have your mini vacation coming up - enjoy! Sending positive thoughts for the results.

    @kbl Glad to hear you’ve only had one day of nausea so far. I hope feeling ok continues for you. Being nauseous and dizzy is no fun at all! Have fun camping! We’ve already got snow here. Boo!

    @denny123 I’m sorry to hear that Herceptin is causing you issues. Do you think this means you will likely change meds? Your length of time on Herceptin gives me so much hope! Hopefully your doctor will allow you to get a scan earlier than December. I wouldn’t want to wait either.

    @snow-drop It is beautiful here! I hope you get to visit one day. I met a couple from Vancouver, BC last weekend and they were amazed at how much room there is here and how you can see for miles and miles. I have to admit, I don’t appreciate the natural beauty around me very often. I’ve lived here my whole life and take it for granted.

    @jobbibo How are you doing with your port? What did your surgeon have to say? Your recent experience sounds painful! I’m sorry you had to go through that. I hope that your new port goes ok and that it heals quickly. Your focus should just be on treatment rather than wound care on top of treatment.

    I’m doing ok, thanks to everyone for asking. I have a PET scan this week before my next treatment to check how things are responding and I’m nervous. I’m nervous about what it might show or not show and what it could mean. I have recently noticed a small, narrow, long lump in my other breast near my nipple that has me worried, although my husband tries to reassure me that it’s likely a cyst as I am currently on docetaxel and H&P. I have category D dense breasts that always have cysts or calcifications, so it’s hard to know what’s what. I am trying not to freak out. All the scans done prior to my treatment say cysts or calcifications (BIRAD 2, benign) in that breast. But my mind goes to the worst case scenario. I think it feels different than the one that was/is in my right breast, almost like it’s on top of breast tissue, but it’s really hard to tell. I don’t know if it’s possible for another tumour to form while I’m under active treatment

    Thinking of you all this week! Sending positive thoughts for whatever might come your way.

  • denny123
    denny123 Member Posts: 1,435

    @Harrow-Good luck with your PET scan! Waiting is so hard…. I used to have fibrocystic breasts, with a lot of painful cysts. But apparently, none of those lumps were malignant.

    As far as I know, I will stay on Herceptin. I was not aware that other ladies have problems with Herceptin. So I was lucky to have about 19 years on it with no SE's. But the head nurse and chemo pharmacist said they would do their best to keep me on it, since it does do a good job.

    @kbl ….I need my cell phone, especially since I sell stuff online. So I have to keep updated when/if I have sales. I also try to communicate with my daughter, but since she is a home health psychology nurse, she is always very busy.

  • moderators
    moderators Posts: 7,681

    Best of luck on your PET scan, @harrow! Sending and everyone here support!

    The Mods

  • jobbibo
    jobbibo Member Posts: 64

    @harrow Sending good vibes for your upcoming PET scan! I was a nervous wreck for my first scans after starting treatment, “scanxiety” is hard to deal with. I had the same thing happen to me with a lump on my other breast. I reported it to my MO and after she felt it she set up an ultrasound right away but said it was likely nothing, still didn’t ease my anxiety lol. Turned out to be okay, they said it was fibroglandular tissue. It’s hard not to think of worst case scenarios due to the cards we’ve been dealt with, but I hope the same for you that it ends up being nothing!

    Saw my surgeon yesterday and now we might not be doing a new port for now anyways. The current wound is looking fine to her in terms of no infection but it’s struggling to close up due to chemo killing my healthy cells too so it’s slow to heal. Continuing to pack it and she might try to stitch it again after a while. Since I only have 3 more infusions of chemo before going on to maintenance (which consists of shots and pills) she thinks we should hold off until I may need it later down the road since I’m healing so slow and my skin has had bad reactions to everything. She’s talking to my MO today to see if they have any objections but if not I guess I’ll just put up with lots of pokes for this last cycle of chemo!

  • denny123
    denny123 Member Posts: 1,435

    @Bobbi Jo…Good luck with your port! That makes sense to just wait a bit so that the site will heal properly.

    Denise

  • harrow
    harrow Member Posts: 38
    edited November 2023

    Thank you for the positive vibes denny123, the mods and jobbibo! I hope it’s nothing as well.

    @jobbibo it never occurred to me about the chemo killing the cells and how that impacts how fast the healthy cells heal, but that does make sense. I mean, I knew that; it just didn’t come to mind haha! With your maintenance being shots and pills, maybe it will be ok without the port. I’m a tough poke too so hopefully you can get through the last few treatments without too much difficulty.

    @denny123 If you get to stay on Herceptin, I hope it stops causing you the weird issues. It really seems to work exceptionally well for you!

    Random question - has anyone experienced hair growth while still under active treatment with chemo that causes alopecia? I’m three treatments in and the hair on my head is growing back already, although I didn’t lose all of it and I still have most of my eyebrows and eyelashes (for now). It’s causing a bunch of red bumps on my scalp (folliculitis I’m told) which I can’t seem to get rid of even with the ointment prescribed for me from the MO. My wacky thinking is that maybe the docetaxel isn’t working? My MO reduced the dosage after my first treatment due to some SEs. Or maybe the reduced dosage is allowing my hair to grow back? It just seems weird and I can’t really find other similar experiences by Googling.

  • harrow
    harrow Member Posts: 38

    I just wanted to share a small win - my request for a new MO was approved! I meet with the new MO next week, but still have my follow up with the original MO this week. That won’t be awkward at all haha!

  • denny123
    denny123 Member Posts: 1,435

    Harrow…yay for you! My onc of almost 22 years is retiring soon and I will be moving on to another one. Apparently, the new guy is as personable as my present one.

    I have no idea about your hair problem. I lost my hair in 2003, but have had it ever since….so far.

  • jobbibo
    jobbibo Member Posts: 64

    @harrow So glad to hear your request was approved!!

    Yet another thing we have in common is hair growth on active treatment plus the rash! I lost most of my hair but had a bit that hung in there. After a while I noticed the hair that stuck around was growing but within the last month new hair is coming in, I can barely see my scalp anymore. I’ve been told by my team that hair growing back doesn’t mean treatment isn’t working, sometimes it happens. I’ve even talked with one person who said their hair started growing back but then it fell out again. My eyebrows and lashes fell out much later, around the start of my 4th cycle. Can’t speak on a dose reduction though, would be interested to hear if that can cause hair growth.

    After my first treatment I broke out into a horrible rash. Mine started on my face, looked like acne but really painful. It then went to my chest, back and thighs. Once my hair fell out I had it all over my scalp as well. My oncologist said it could be from the chemo but I also have seen a lot of people in Facebook groups say they get rashes from Perjeta so I’m not sure what causes it in my case. I was on antibiotics for it in case it was cellulitis and then also an antibiotic cream, both kind of calmed it down but didn’t fix it completely. The rash hasn’t been nearly as bad since my first two treatments. I hope yours starts to get better!

    @denny123 Thank you for the good luck! Also sending good luck your way that you’ll be able to continue Herceptin without further issues. Glad to hear they’re going to do what they can to keep you on it!

  • kbl
    kbl Member Posts: 2,637

    Hi, everyone. I’m back online. Thank you for the well wishes on Orserdu. Still doing okay 11 days in.

    Harrow, I’m thinking about you for your PET.

    I’ve never lost my hair, as the only chemo I was ever on was Xeloda, and it’s in pill form.

    I'm thinking of you all. We had a nice time camping. They did have wifi at the office, but it wasn’t a secure wifi, so I wasn’t staying on it long. It also wasn’t too reliable. Lol.

  • denny123
    denny123 Member Posts: 1,435

    @kbl—--welcome back! My only idea of camping would be in a luxury motorhome will all amenities. I hate spiders.

  • kbl
    kbl Member Posts: 2,637

    Thank you, Denny123. Our camper is a pull behind, but it’s a new 2023, and it’s got two slideouts. I really like it. None of the bugs got in on this trip, and I haven’t run into any spiders, but this grasshopper was by where I would sleep on one of our last trips last year. And you would hate where I live. We have huge banana spiders.


  • denny123
    denny123 Member Posts: 1,435

    @kbl …..Your camper sounds nice. No way to banana spiders! I have no problems with mice and snakes, though.

  • harrow
    harrow Member Posts: 38
    edited November 2023

    @denny123 wow! The same oncologist for 22 years. That’s a long time. I really hope the new one is as personable as your previous one!

    @jobbibo we do seem to have some things in common. It’s nice to find someone with a somewhat similar story, thank you for sharing. I feel like my hair is both growing and still falling out, it’s weird. I started putting on the hydrocortisone cream my MO prescribed on my scalp as per her suggestion, and it has really worked! I also started using an anti-fungal shampoo as suggested by the pharmacist and I think that’s helping as well. I am hoping my eyelashes and eyebrows don’t completely go away as I am terrible with the fake lashes and I’m not much of a makeup artist for my brows. I did get then microbladed before I started treatment knowing I would like lose them but I have no idea what they look like with no hair.

    @kbl welcome back! I’ll glad to hear you had a nice time, especially without any bugs in the trailer! That grasshopper looks nasty!

    I have my meeting with the new MO tomorrow. I hope it goes ok. I’m a bit nervous for the PET scan results, assuming they will be ready by then. I want to feel hopeful but don’t want to get my hopes up too much. It’s a fine line.

    Have a good week everyone!

  • denny123
    denny123 Member Posts: 1,435

    @harrow My eyebrows are very sparse, so I just use brown eyeshadow on them. They look real that way. I am not a fan of dark sculpted eyebrows.

    Winter is coming in PA since we will have a hard freeze tonight. I hate having to cut down my pretty flowers and veggies that are still producing.

  • superdenovo37
    superdenovo37 Member Posts: 33

    Hi, I don't post often but wanted to check in.

    I recently celebrated three years since my de novo diagnosis on October 1st, 2020. My daughters were 2 and 5 at the time of diagnosis, and are now 5 and 8.

    This year I got to see my youngest turn 5 and go to kindergarten. My 8-year old conquered her fear of falling and learned to ride a pedal bike. I was able to celebrate my 40th birthday with friends and family. My husband continues to provide love and support for me and our kids. ❤️

    I have been on Enhertu for 23 cycles (three week cycles.) Hoping for many more! Sending love and well wishes to all of us!

  • kbl
    kbl Member Posts: 2,637
    edited October 2023

    Thank you, Harrow. When I told my husband about the grasshopper, he went to grab it, and it jumped across the room into the other wall. I just needed to scream GET IT. Lol. I wouldn’t have slept very well if it was still in there somewhere when I went to bed.

    @superdenovo37 Hi. I’m so happy to hear that Enhurtu is working, and I hope it continues for a really long time. What sweet things you’ve experienced since being diagnosed. I hate that anyone gets cancer, but I have no words when you’re so young and have young children. My daughter was grown when I was diagnosed. I’m sorry you have to go through this.

    @denny123 stay warm. Brrr

  • denny123
    denny123 Member Posts: 1,435

    @superdenovo37…I'm sorry that you were dx'd so young, but you are strong and can enjoy those little girls. My daughters were adults when I was dx'd.

    Keep up the fight!

    @harrow …LOL. I'd prefer a grasshopper to a spider!