Starting chemo February 2020
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@Fab4mom - fill was just about 3 weeks after surgery and, my second fill is 2 weeks from now. I know others do weekly fills so I'm not sure what's standard.
My drains were ready to come out 1 week post surgery. I was at/under 30cc for 2 days but, he wanted to leave them in for the weekend to be safe. I had them taken out Monday morning around 9am (10 days post surgery). They were under 30 all weekend mostly in the Teens/20s
I'm glad the surgery is going well. That nerve block is fantastic. All doctors should do it.
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My surgeon just called with the results of my DMX last Tuesday. They found cancer in the breast and a lymph node. I'm going in on Tuesday for another surgery to remove lymph nodes. I have my plastic surgeon going as well to do a microsurgery reattachment to try to prevent lymphedema. My pre surgery scans looked great, so I thought I was past this, but now it looks like another surgery and probably kadcyla. I'm definitely a little scared at how aggressive my cancer is. I don't want to have to tell my family right now. My husband was going to take the kids away for a few days to Michigan, but now that's over.
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Fab4mom, oh man. That's so scary. I'm so sorry. Hugs.
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@Fab4Mom - Sending you light, love and prayers. God bless you and your family. God bless all of you who are not out of the woods yet. Sending you all best wishes.
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Hray - hope you are feeling better after the transfusion.
Fab4mom - sorry for you having to get that news (cancer left after chemo) we are all dreading. No one wants more bad news - especially after thinking you got good news. Its what I'm preparing myself for since I can still feel my lump pretty easily. My MO said Kadcyla not so bad - not nearly like TC - so while I'm hoping no cancer found in my nodes - I'm not that down on the idea of still getting some chemo to kill any cells left floating around in my body looking for a home.
I go for my first H&P only on Tuesday. Do they still give you Zofran with that? If so, I'll need to start my anti-constipation regime again beforehand.
My husband is an anesthesiologist at the hospital where I'll have DMX and he's working to make sure I get that nerve block - he says that when they work they help with pain management really well and decrease need for anything more than tylenol once home. Pain mgmt is one of the reasons they are more likely to want to keep you overnight too - so more likely to go home same day, though my BS still talking about keeping me overnight.
My surgery is not scheduled until Aug 18th, which will be 8 weeks after my last chemo. This delay is irritating to me but I unfroze my gym membership and am planning to get back into working out (outside only) and playing tennis and will just try to enjoy myself and get into the best shape I can before surgery. Also on the plus side, kids will (fingers crossed) be back in school by then so I can recover at home without them there.
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I go for my first H&P only on Tuesday. Do they still give you Zofran with that? If so, I'll need to start my anti-constipation regime again beforehand.
I didn't get any premeds before HP nor Kadcyla. The head nurse said I would get Benadryl for my first Kadcyla but day of infusion they just gave me the Kadcyla.
I've talked to others getting Kadcyla and they get various pre-meds. Once again it's all down to how your doctor does it.
Best of luck with surgery, hope you get that nerve-block it really makes pain manageable and, I'm happy to avoid opiates.
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Hhray - I hope you are feeling better from transfusion
Scattered Energy - Enjoy this weekend before surgery. My hospital makes us do a drive thru Covid test 3 days before the procedure and then quarantine at home after that. They have one specific location that you have to go to. I had to go back today since I"m going back in for surgery on Tuesday. Same as last time, lots of throat swabbing, it's not fun, but I could handle it.
mmorigan - I was happy to have the nerve block. I really didn't need any other pain pills besides tylenol. Of course it hurt to move around a little bit, but overall, it's been fine. I'm happy to hear Kadcyla is going well and you don't have to do any pre-meds.
micdpowers - I don't take any pre meds for H&P. I've done two treatments and I don't think I have many side effects from it. I'm ok with the extra chemo if it kills the chance of any little cancer cells surviving somewhere in my body. I'm pretty worried about the lymph node removal, but I am hoping that my plastics doctor can bypass the nodes and help me avoid the lymphedema. The nerve block is excellent, your husband is right. Enjoy your time before surgery. I had to wait 6 weeks from my last chemo, and I will say I felt so much better by the time I went in for surgery, much more like my old self. I was working out and all that. Now of course I'm not allowed to work out for 6 weeks, but have already been going for walks and stuff.
I'm feeling a little better about everything today. All the fear of cancer comes back with the bad news, and then I hate having to deliver the bad news to friends and family. And I'm starting to feel so bad for my kids. With Covid, we've been mainly staying home since March. This upcoming week was supposed to be our annual trip to a rental cottage in Michigan. When my DMX was scheduled, my hubby and I decided that as long as I was healing well, he'd still take the kids for part of the week, since we had paid for it and everything. Now, I have to go back in for surgery, so they are probably going to miss the one thing we had going on this summer. I feel guilty. I logically know that they all want me to get better and we can get back to MI next year, but I still feel so guilty. My kids have been so careful and mainly home, and I know it's so boring, but they do it for me.
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Fab4mom- ugh, I’m sorry sorry the post surgery pathology wasn’t ideal. It’s such a bummer. I’m a little scared because I ended up with surgery first (biopsies could only find DCIS) and then ended up with chemo due to my post surgery pathology, so I don’t really have a way to tell if the chemo worked for any residual disease they didn’t find during surgery. I’m sorry you’ll have to do surgery again
Micd- I agree with Morrigan, I haven’t gotten any premeds before my HP infusions (I’ve had 2 now). I’ve actually had little to no side effects just being on HP...not even much of the dreaded diarrhea! Radiation is what my current bother is (red/sensitive skin, some fatigue). For surgery, I can’t even remember if I had a nerve block with my BMX/recon...it was in January of this year but feels like a lifetime ago! I’m guessing I did because I really didn’t need much for pain management beyond a day or two of the opiates and then tylonol/ibuprofen.
TCHP/Her2+ ladies- has anyone’s MO talked about doing nerlynx after you finish HP? I brought it up to my MO and he was unsure and didn’t currently recommend it . I know it’s newer, but I’d really like anything that potentially keeps this cancer beast away
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"TCHP/Her2+ ladies- has anyone's MO talked about doing nerlynx after you finish HP? I brought it up to my MO and he was unsure and didn't currently recommend it . I know it's newer, but I'd really like anything that potentially keeps this cancer beast away"
I brought it up to 3 MOs when I did my initial search. The MO I'm at said we could talk about it when we get to that point.
The 2nd MO said it's not part of the standard but the study I mentioned did show benefit for Triple+ due to the crossover effect but, he'd have to wait and, see what the new protocols showed.
The 3rd absolutely refused to consider it. She said she had 1 patient on it and the SE (diarrhea) was so bad she refused to prescribe it for anyone else.
The Kadcyla Support group (Facebook) I'm in has a few people that have already ended or just reached the end of their treatment and they're MO has put them on Nerlynx as the next drug.
I plan on fighting for it, I've wanted it since the beginning even if I am susceptible to the SE. For me the benefits outweigh the risks. As long as my Insurance will cover it I'm going to ask my MO to prescribe it after Kadcyla.
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Morrigan- I share the same thoughts as you. The benefits would outweigh the risk and I’d think I could somehow manage the SEs or push through for the added benefit. I like that it’s an option that can cross the blood-brain barrier. I think I need to push my MO on it a little harder. I’ve got some time since I have HP until January
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Ajminn3 and mmorigan - Nerylnx is definitely on my radar now with the residual cancer. I handled the TCHP pretty well, so I'm interested in anything that can help prevent recurrence or spread. I'll definitely ask when I meet my oncologist after my lymph node surgery.
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I actually got admitted into the hospital when I got my transfusions My white blood cells were at a 0 and my absolute neutrophils were also at 0 After days in the hospital and a constant 103 fever things are finally starting to get better
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Hray - so sorry you got admitted and that your blood counts were so low. Glad to hear your on the rebound. Feel better soon, it's almost over with
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Oh no Hray! I'm glad to hear you're getting better. I hope those WBCs and neutrophils keep climbing up and you’re feeling better soon!
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Fab4mom, sending hugs. Sounds like they have a plan for your pathology results and you will get through the additional treatment!
hray, so sorry you have been having issues with your AC. How many more infusions do you have of AC? Sending hugs and hope you are feeling better!
I have spent this weekend cleaning my apartment because my friend is going to stay with me for a few days after surgery to help watch my son. I'm glad I have a bit more energy since chemo. It's still only about half what I'm used to, if that, but my apartment definitely needed a cleaning after 5 months of neglect!
I'm ready for this surgery on Friday!
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Just wanted to let you all know that I am looking in every day to see how you are doing, even if I don't post. Sorry about your set backs, and holding out hope for everyone. God bless you.
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HHray - That's so scary. I'm sorry that you had such a bad turn with the chemo and so glad they got you in the hospital and under care. Chemo is powerful stuff, and can really mess with your body.
Dysonphere - Great idea to get the apartment clean. I went into "nesting mode" before surgery, and it helped to come home to a somewhat clean house. With four kids around all day long, it never stays clean, but it feels a little better. I had to follow ERAS before my surgery too, which involved showering and changing my sheets the night before surgery. I change them regularly as it is, but it did feel really nice to do a super scrub of my body and slide into a fresh bed the night before surgery.
Sweettalker52 - thanks for checking in on us and the encouragement.
I'm still definitely bummed about going back into surgery on Tuesday, but am happy that I seem to be healing up from the DMX really well. I'm moving around a lot, and went for some walks. I have drain belts and a drain t-shirt, but it's hard to feel normal going for walks outside, because it's really hot, and i have to wear really oversized button down shirts, that don't work well with shorts. It would be a lot easier to hide in the winter. Hopefully I get the right side drain out on Tuesday, and then I only have one drain on the left, where the lymph node surgery is. The surgeon wasn't sure if I'll end up with two on the left, or just one where I currently have one. But I'll definitely need a fresh drain for the new procedure.
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copied over from the Kadcyla board...it's still early I haven't even completed cycle 1 but, I think 8 days puts me over the hump.
Today is Day 8 for Treatment #1 of Kadcyla.
I don't think I've had any SEs (so far). If I have they've been very mild. I don't feel any different than I did after my solo HP treatment.
I'm not going to get excited because from what I understand this treatment can be unpredictable (as far as SEs) and, there maybe a difference between the 90min infusion and the 30min fusion.
However, if (🤞🏻) the next 13 infusion go this smooth I will be very happy (🙏🏻)
In other news I went for a walk this morning and got attacked by a sidewalk (tripped and fell). Banged up my arms, knee and chin but, protected the foobs (thankfully).
Happy Monday 😁
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morrigan_2575, that sucks. I'm scared of falling going up and down my stairs lol
Went to the beach this weekend and it was great. We went to one two hours away because the ones local to us are packed.
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mmorigan - so glad the Kadcyla is treating you well so far. And ouch for tripping on your walk, but nice job protecting the foobs!
ScatteredEnergy - you look great in your suit and hooray for a beach day! I made it to the pool twice before my surgery last week, it felt so good to be out. I didn't go bald, kept my sun hat on the entire time, but still felt amazing.
Waiting to hear from my hospital schedulers about tomorrow's surgery. It's at the hospital farther from home, and again just drop off, which makes everthing a little trickier. Tenantively I'm told surgery is at 12:30, but hasn't been confirmed or been told how long it lasts. My hubby drops me off, and then at some point tomorrow night, hopefully I'm awake enough from general anesthesia and they send me home. I have to text him and coordinate pick up, since he's not allowed inside. Definitely not an ideal situation.
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looking good Scattered Energy! I'm pale as a ghost but, that's normal for me.
@Fab4Mom - Good Luck tomorrow! See if your place will do the coordinating. My place called when I woke up and told my friend what time to pick me up
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Thank you ladies.
And yes, the coordinating part is annoying. I need to remember to ask tomorrow how long is the surgery and when will I be discharged so my fiance can be ready.
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They didn't coordinate great last week. They were great during surgery with text updates to him and both doctors called when I was out. But then during recovery, everyone kept asking me when I was leaving. Like the patient tech, the nurses, even the residents who followed up. I was like "ummm, I think you tell me?" Near the end, my nurse did ask how long it would take him to get here and then told me what time to have him leave. But even though, she called me a wheelchair and it took forever to get there. I was ready to just walk out, but I know that's against the rules.
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Fab4mom, crazy. It really bothers me when people screw up at their job.
Ladies, what I feared and suspected happened lol. My surgery has been canceled. I tested positive for Covid-19. Now I will most probably be tested again on the 23rd and 24th. If those two come back negative then I can have my surgery.
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Oh Wow, ScatteredEnergy - I can't believe it! I'm so sorry that happened to you and you have to postpone the surgery. What an awful turn of events. You don't have any symptoms right? That's the good news, but putting off any treatment is so hard. I keep hearing how bad it is in Miami. Testing positive has been one of my fears, but it's quieted down here in IL so much, i have tested negative both times. Big hugs to you, I'm sure you are so frustrated.
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Fab4mom, Miami is crazy. I'm feeling the same i was feeling with Taxol. Congested, fatigued,and with a bit of diarrhea but I'm eating a lot of chocolate ice cream and my body doesn't like that lol
I only had my doubts because my fiance was under the weather. If it wasn't for that, I would have been shocked at the positive result.
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Every time I went to a Dr they asked the COVID questions and my answer was always yes but, that is probably the Chemo. The Chemo SEs and COVID symptoms atr the same! I almost want to get an antibody test to see if I did have it but, I don't know if you need to prove you had it or something.
Scattered Energy - Sorry your surgery was postponed and, I hope you only have a mild case of COVID and, get better soon.
Fab4Mom - i had a similar issue. They called and updated my friend during surgery but, someone dropped the ball on calling for the pick up so I was there about 20 min longer than necessary. 😐
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I stopped saying yes to any of the Covid questions a long time ago, because I knew it was all chemo side effects. I have answered those questions a 100 times already. I’m not sure how that screening really helps anything anymore.
ScatteredEnergy - I hope you and fiancé both feel better soon and you test negative next test.
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Scattered- bummer about the Covid test and the surgery cancellation. Everything about Covid fascinates me...I would love to get an antibody test to see if I’ve had it. Like everyone else said, chemo side effects and Covid are similar, so who knows if I’ve had it...
My 1.5 year old and 4 year old both have snotty runny noses and the 4 year old had a fever last week, so of course I panicked and assumed Covid, but their doctor said it’s unlikely and they didn’t want to test them...so I guess we shall never know. Luckily I didn’t catch their crud despite being their human Kleenex all week.
As an elementary teacher I am so, so curious to see what the plans for Fall are at my district. I’m even on a “Fall planning committee” and don’t have any info beyond “plan for all types of scenarios”...
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Ajminn3 - we all had some sniffles around the house last month. But I tested negative for Covid 2x now. The school thing is so confusing, I don’t envy your position as parent and teacher at all.
I’m waiting to go in for surgery. I can’t believe I’m here again one week later
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