Starting Chemo July 2019
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Hello all! Home from surgery and finally ready to touch base with you all.
Surgery went well - he took all the breast tissue so I guess that means clear margins. I did a skin sparing so it just looks like my boob was deflated. He took the sentinel node and three others. Apparently the sentinel node had cancer cells in it but he wouldn't say how much or how bad - just have to wait for pathology. I knew this would happen - I've had a bad feeling about this cancer journey being my new reality for a very long time and trying to stay positive gets harder and harder at every turn. It seems like I look for good news but don't get it and then figure I'll get good news at the next step and nope - I guess this is just my journey.
Get the expander placed next Monday so I am not getting too used to feeling better - I'll just get knocked down again next week. They didn't say when I would get the path results or who those would come from (surgeon or oncologist) but I have appts with both of them next week so either way, I'll get to ask the questions that no one has answers for. It seems that every time I ask a question there is never a solid answer.
So I am assuming that I will definately need radiation now since they found cancer in the sentinel node - this is never going to end.
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Deanders! Thanks for giving us an update.
All is not lost! Clear margins. Great News. If it is like me, the surgeon will have your path results. I got mine a week after surgery. So just the sentinel node has some cancer? That is not terrible news. And now that cancer has been removed. So you have some radiation ahead to make your armpit inhospitable to cancer- bing bang boom by April that will be all done (most likely by March really) then IIRC your are ERpos so a pill and by Easter you can focus on your fancy new boobs!
If you are like me it will still take some time to sink in that the cancer you were worried about growing has been removed. That tumor is not longer there and the node is gone too. I realize there can be tiny cancer cells roaming around in all our bodies but what good does it do to focus on that. Ya know?
If I could I'd come make you a nice dinner and make you laugh. I'm quite funny-esp. IRL - don't listen to my 15 year old daughter, she doesn't get my sense of humor.
Big hugs!-Victoria
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JJpope glad your face is better!!!
Britgirls my fingers are crossed that the raditation room isn't freezing cold when they do that 3x is the charm CT and that soon you are getting that radiation you have been waiting for. - LOL
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deanders
Good to hear your surgery went well with no complications.
My surgeon didn't tell me anything about nodes being positive or negative until that path report came in. Surprised to hear your surgeon told you sooner.
Yes, it definitely feels like the treatments will never end - I'm so over it - but we will get through this.
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I hope you don't mind me popping in. Waiting on pathology of tissue was told nodes were clear.
Deander I hope you don't mind that I am sending love and a hug and am jealous that 2019whatayear is coming for dinner! That's the kind of energy we all need around us! 😉
💖
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So my hair was growing back all white (the ring around my head) and now the top is growing black and white. More black than white, lol. I’m glad it isn’t reversed or I would look like a skunk.
😂
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You got this deanders. And you have love coming your way from all over.
My surgery is on Monday and I am starting to freak out.
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Fairydragonfly, don't stress out too bad. This surgery is going to be smooth sailing and I know you'll have a good recovery. By March you will be feeling great!
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three months post chemo and still have very little hair and no eyelashes. Dr says Perjeta (which I’m on through July) could be slowing it down. It really sucks and I’m having a major meltdown about it. Perjeta is causing daily diarrhea which I can handle but I really would like some hair. I also don’t want to quit Perjeta even though they have offered several times. Anyone else in this situation
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Hi Rubydream, I finished TCPH on Nov. 14th but continued with Herceptin and Perjeta until Dec. 26th. I just had my first Kadcyla treatment yesterday. My hair is very slow growing...I'm not even sure what color it is yet! Kadcyla does not have hair loss as a SE so I'm hoping things will move along quicker now. I guess what I'm saying is I too haven't had any luck with hair growth but don't give up...it should start soon. I'm sorry you are sill having diarrhea with perjeta. I suffered with that also and lived on lomotil.
Fairydragonfly, good luck with your surgery on Monday...I'll be praying for a successful outcome for you.
Deanders, Good luck to you also on your expander placement.
Hope everyone has a great weekend!
Julie
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thank you finana2 I never heard of Kadcycla??
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Kadcyla is a new drug with fantastic results in the Katherine Trial for patients that are Her2+, have been treated with Herceptin and have residual cancer after surgery. I qualified and will be getting 14 doses every three weeks. There are definitely SE's but not like TCPH. I feel pretty good today so we'll see.
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Happy Friday everyone. I hope you are all having a good friend with little or no side effects and that soon all our complaints are of the mundane variety!
I have been blogging this year now that I am more settled with my unexpected healthcare journey. It's not a cancer blog I've been blogging on and off for years. You can check it out here if you want :-)
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When I see the radiologist again Monday it will be my second appt for “placement” or whatever the heck it’s called where they put marks on your body. Forgive me but my brain is fried. My concern is 4 weeks post surgery and my breast isn’t healed. Still red, swollen, hard, and fluid.
I don’t understand how they can start radiation when my breast hasn’t healed from surgery !?!?!
I’ve tried looking up posts on other threads but No one is talking about healing before rads.
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Good morning ladies! Went back to work Monday 🙌🏼🙌🏼 If I could I would have done back flips going in. I was sooooo glad to get back to work. I also joined a community center couple of buildings down from work and I am starting to walk on the treadmill. My face has cleared up. Doing better with tamoxifen now that I started trintellix. I would actually really want to point out that trintellix has helped 100000 % with my anxiety, worrying all the time, thinking all the time. At night I take one Xanax so my mind shuts off and I sleep. I can see a huge difference in my metal well-being. It’s not made me drugged up, or a zombie or anything like that. So maybe that would be something you could speak to your doctor about. If it helps, reduces the mental battles, and makes your days easier it’s worth a try in my opinion. My days seem to be pretty normal now. Still dodging people and germs, the flu and mess is going around terrible here. The weather isn’t helping either, we have been having 70-80 days and now this week low 20’s just insane. My hair is still growing pretty even and looks like a gray to me 😳 then I have one patch at the front that is a light gray. Can’t wait till I can slap color up there! I told my husband the other day maybe I should slap a big bow up there like new moms do who want their babies to have hair 😂😂 I’m doing good from surgery (12/5) I’m starting to be able to sleep on my side again. Out of the binder and now have to wear spanks with the thigh part and boy do I hate that thing. Shaw it’s like being wrapped in a fruit roll up. The one thing I can say that kinda drives me crazy is I have a itch and I feel that but skin is still numb in boobs and skin around so when I scratch it’s not helping. It’s weird. But I’m healing well and still and 100% happy with what I’ve chosen.
I’m so glad you all are doing well, or well for the time your in. I know we are in different stages but we all are still here and support each other! Keep pushing everyday and don’t give up or in. Have your down moments, then stand back up and go forward.
I hope you have a great weekend and I’m always here if you need to chat 💕💕💕
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and PS flnana2 I want you to know I tried my hardest to find a room at Disney this weekend. I was going to jump and run which I DONT DO I am a planner and like routine . I want to get away so bad, I love Disney, weather looks great, found decent flight, and have Monday off so I said WTH let me look. But can’t find a freaking room on property 🤬🤬 Oh well, maybe next time Mickey 😢 Do y’all go to Disney often or since you live in Fl it’s not as great going a lot?
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Great to hear you are feeling good and even hitting the gym JJpope! A bow for your hair or ....Mickey Ears? :-)
Melmax here is part of an article from this website. Looks like it's common to start radiation while the healing processing is going on and with some cancers they do radiation during or right after surgery:
When chemotherapy is not part of your treatment plan, radiation is usually given soon after surgery. The timing depends on the type of radiation you'll be receiving:
- External beam radiation, the most common type, usually starts about 3 to 6 weeks after surgery.
- Partial-breast radiation is usually given immediately after surgery.
- Intraoperative radiation is given in the operating room during surgery, just after the cancer tissue has been removed but before the opening in the skin has been closed.
-Victoria
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Rubydream, I too was scheduled for perjeta and Herceptin, but I found study, published late 2019, that said with my cancer, perjeta only increased my survival by less than 1% and had SEs of diarrhea and hair loss. My MO agreed and so I’m only doing Herceptin. You mightwant to ask your MO how much the perjeta is helping.
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Hi Everyone.
I have been intermittently lurking here since last summer. I started TCHP on July 11 for triple +BC, last dose Oct 25. I had surgery December 9, since there was residual disease my MO also stopped the Perjata and once i am done with radiation will start Kadcyla. I am glad there is good treatment, and I actually read the KATHERINE trial paper, but I am getting worn down. I am sure I am just extra worn down having to go to the hospital every single day for radiation (7 weeks!) but there is also the emotional hit of thinking I had a plan and would be done by June, and now still have to go to December (at least -- there have been so many twists and turns it is hard to believe there won't be more. My HER2 only came back positive 3 days before my surgery was initially scheduled).
I don't know why I am finding it so hard to post here, when everyone here is in roughly the same boat, but it is.
The good news is my hair (and eyebrows!) is growing back, and I have started to go without a wig at work with good response.
I hope everyone here is well, and stays well!
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Hi Y/D It is a slog isn't it. How nice to be wig free!
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Welcome Ydragon,
I’m glad you have reached out. Our stories are very similar although I have known since July that I was triple positive. It does seem like it’s never ending but I choose to believe that at least the infusions will end and life can go on with the new normal after Kadcyla. It seems sometimes that every time I meet with my MO he has a new something to add on. This Last time, although I knew it was coming, he told me after radiation I will start on letrozole for probably 10 years and zometa every 6 months for probably 5 years. i wonder what he will tell me next time? Congrats on your hair growing back so quickly. Celebrate the small stuff!
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Jjpope, I’m sorry you Weren’t able find anything at the Disney resorts this weekend...probably packed for the long weekend. We don’t actually go to the parks much but have lots of friends that do. All Our kids and grandkids, ones 3 and one’s 7 months, are coming this week so we will probably go to at least one park and LEGO land while they are here. When you do come down please let me know and we can meet up.
Julie
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Yes, actually my HER2 came back right before my original surgery was scheduled for June 28, so I did know before surgery as I was suddenly changed to getting a port and starting chemo instead of straight to surgery and radiation. It is all the changes that are hard, even though I know they are right, as you know it is an emotional hit. I am sure my mental state will adjust to this as well.
And someone I work with told me I look "badass" with my new $500,000 hair cut
I just don't think it's fair that my leg hair is growing back faster (and darker!) than the hair on my head!I do know I will start hormonal therapy (and a bisphosphonate) after rads is done, but we haven't discussed which yet. I am already having wicked hot flashes after chemo -- hope they don't get worse!
Thanks for your support!
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Starting tomorrow the actual # of treatments I'll receive is 33. The last five being boosts. I saw the final marks on my body when I got home today and immediately called the radiologist office. The area being treated goes towards the edge of my under arm all the way to my back and I thought they did something wrong. The therapist explained that whole area is the breast and that breast tissue actually goes back that far. Anyway she said she would show me some drawings tomorrow and a physicist would explain. I know some of you are going through rads now or will be starting soon so let’s get through this together. 💪🏻
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Fairydragonfly
Hope you are doing well after your surgery! 💜💜
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Fairy Dragon Post when you can! Hope you are well!
I had #11 out of 25 today. Radiation you don't spend hardly anytime sitting around. Go in, change, hop on the table...buzz buzz buzz buzz- and see ya tomorrow.
I would have been able to skate on the whole radiation thing if I didn't have micro mets in one doggone lymph node. Oh well.
Hope everyone had a good day today!
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just wanted to send love and well wishes to each of you! I hope each day this week is a better day, a easier day, or a day that you see any improvement at all. If it’s not, I pray for God to give you strength, grace, and mercy. 💕💕
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I received a copy of my ct scans with lines thatshow the area being treated with radiation. Glad they shared. One question I forgot to ask and someone here may know is why do they mark up my left breast too?!? It’s one target mark and quite large.
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I don't have boobs anymore so I don't know like exactly where abouts they marked you up but I have a couple marks on my right side (getting treated on the left, and I think it is just for lining up purposes. The radiation field for me only extends about 1 inch into the right side of my chest.
That is cool you got a copy of your CT. I want one when I am done. Might frame it. LOL
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Hello Ladies! I am finally feeling up to posting - the last two weeks have been a whirlwind of surgery and stress. I got my expander placed yesterday which was just a day procedure. So glad because I didn't want to have to stay overnight again - I hate hospitals, they are full of sick people.
So I got all the pathology reports back, both the surgeon and oncologist went over them with me, but that just creates more questions. They found a 10mm tumor in my sentinel node so they did an axillary node dissection which ended up taking 19 nodes, all came back negative so that's really good news. It may also change whether I need radiation or not because there really isn't anything left to irradiate. I have the re-eval appointment next week and they will decide my radioactive future at that time.
I was reading the other posts (I think it was jjpope1) about the numbness in your arm. I am having the same issue and it can be quite painful. Hope it fades away, the surgeon indicated that it is normal and usually goes away.
Still struggling with my hair coming back on top. The sides are nice and full, gray but full. As for the top and a small portion behind my ear all I have is scraggly little bits and pieces. I was hoping to be wig free sooner rather than later but I am guessing that isn't going to happen.
I do find myself in that odd limbo where I am not sure who my doctor is it's like the calm after the storm - you're not quite sure if it's over yet but you certainly hope so.
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deanders what u said about being in that odd limbo....yes! I’ve felt that way at certain times throughout this treatment.
For all of you ladies doing reconstruction - my upmost respect. You are warriors! 💜
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