Starting chemo February 2020
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wonderful news about the AC shrinking it. I'm sorry that it started increasing in size once you went to Taxol only. Hopefully that trial will be successful and we have a new treatment for BC
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I hope so! Idk when or if I’ll find out anything about the trial. I also had Pembrolizumab as a trial drug too. But I feel like those injections did the most for it
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I know i am down to my last 2 Taxol treatments. I am happy about that. Really I am. But damn if I'm not sick and tired of these side effects. For me, I am just constantly tied to the bathroom. It really doesn't matter if I have constipation or the other. I always have the sensation I need to go to the bathroom and so I am always in there either way. I'm tired of the bathroom. I frickin hate the bathroom. I wish I could take a bat to the bathroom. If I had some strength, I would take out all my anger and frustration on that bathroom. lol Okay, so I feel a little better after complaining!
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dysonsphere, that sucks. My stomach has been fine. Thank God.
Some weird I was just telling my fiance. I actually look forward to my chemo days because I tell the nurse to put the Benadryl first and I take the nicest nap ever. And when I get lucky enough to get a bed in the chemo unit, even better. I'm trying to find an over the counter Benadryl pill that would have the same effect. I don't want to feel drowsy after. I have a hard time sleeping when I'm home. Anyone knows?
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I loved my Benadryl naps when I was on taxol They were so nice! I don’t get to sleep through AC though which is a bummer. I also have a really hard time sleeping at home. I’m thinking of taking a Benadryl one night when I don’t have my kids so I can get some good sleep
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hray1993, I have thought of that but I don't want to wake up drowsy. The chemo Benadryl doesnt make me drowsy.
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My doctor gave me a prescription for Ambien shortly after diagnosis. I rarely use it, but after several nights in a row of having trouble falling asleep, I'll take one and it works quite nicely. I tend to wake up on my own earlier the next morning after using one.
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I don't get benadryl for my Taxol. Just steroids. Bummer.
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micdpowers, I'll ask my oncologist
dysonsphere, I love it. Maybe ask for it lol
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I had my #6 and last Taxotere infusion yesterday. Things clicked right along and we got out of there the earliest we ever have. Also my last session with the Dignicap. I will not miss it! And my last Neulasta Onpro shot goes off this evening. The crummy side effects should start tomorrow.
I'll have a CT scan in two weeks. Seeing as all my tumors had resolved halfway through chemo, I expect things will be good that way. I'm anxious to see if the ground glass opacity in my lungs has changed.
My onc gave me a Rx for codeine cough syrup. I'll take it at night to help sleep but I'm not crazy about taking codeine 4x/day when we don't know the cause of the cough.
I return in 3 weeks for infusions of Herceptin and Perjeta only. The chemo nurse said I won't need pre meds so the sessions should be nice and short. This will continue for as long as it works. My onc is encouraged as I had such a good response to the Taxotere. She's hoping to keep me recurrence-free for a long time. I hope she's right.
I'm so looking forward to feeling better. I expect it'll take a couple of weeks to get clear of #6 side effects.
There's light at the end of the tunnel February gals!
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"I don't want to feel drowsy after. I have a hard time sleeping when I'm home. Anyone knows?"
I've been taking Melatonin to help me sleep, it works great
"I actually look forward to my chemo days because I tell the nurse to put the Benadryl first and I take the nicest nap ever."
When I was done with my final Chemo and they were taking the Dignicap off, the nurse asked what I was going to do in 3 weeks with all the extra time. With TCHP and Dignicap i was normally there from 8am to 2:30 pm. With HP and no premeds I should only be there for 2 hours (labs, meeting with MO and then treatment) maybe even less.
I said, well hopefully I can sleep through it like the rest, she said you won't get a sedative or benadryl so bring a book 😁. I was quite bummed that I wouldn't be able to get my normal nap time in.
"Also my last session with the Dignicap. "
Tomorrow is my first HP only session. I will not miss the Dignicap. In fact I'm quite excited for the ability to use the bathroom as necessary. i hated having to get disconnected for bathroom breaks so i held it for 5 hours or so. 🤣
Congrats on getting to the end of treatment!
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MNSusan- congrats! May you remain reoccurrence free!
Morrigan- You’ll have to let us know how just the HP goes. I’m excited for shorter visits. My MO said I’d only have to meet with him every other time I do HP if I wanted since bloodwork wasn’t needed as often on that regimen. I used to sit and get some much lesson planning and paperwork done during my infusions since there were no visitors allowed and I was kid free. Not sure what I’ll do now that it’s summer and I’ll have shorter infusions
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MNSusan - Congrats on the last taxotere, it's such a good feeling. And I hope your lungs are clear at the CT scan, I'm sure that unknown cough is stressful. I wouldn't like taking that much codeine either.
mmorigan - I'm interested to hear how the HP only goes for you. My first session is next week. It's so interesting that you all got Benadryl with your infusions. I never did, so I was awake the entire time, it was a very long day. And I always had to go to the bathroom so many times. I always went right before the Taxotere and Carbo, because I iced my hands and feet and couldn't go during that part, but by the time I was done I was ready to explode from all the fluids in me. I'm jealous of all you who went through with the Dignicap. I didn't do it, it was just too much of an extra committment, and I'm not actually regretting it, but I'm very ready for my hair to start to grow back. Today is two weeks post chemo, so I feel like I should be at the height of when my hair would have been falling out, and it should start to sprout soon. Fingers crossed!
I went for an MRI with contrast yesterday to see how the cancer looks. I'm anxiously waiting results. I'm also waiting for the schedulers to actually schedule my surgery. I called on Friday and left a message, no return call, so I called yesterday, and was told they have it. I told them literally just schedule it anytime and let me know, the sooner the better. So right now I'm back in that helpless waiting mode that I hate! Feeling good for only two weeks post TCHP, and just keeping busy as I can with my kids. It's going to be a LOOOOOONG summer to try to keep them busy and not playing video games all day every day.
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"It's so interesting that you all got Benadryl with your infusions. I never did, so I was awake the entire time, it was a very long day. "
I got Benadryl with the first 2 sessions only. However, I got a sedative with all 6 treatments because of the dignicap. The first 2 treatments i slept almost the whole time. The last 4 I got a good 2 hours of sleep in.
The biggest pain with dignicap (beyond the physical discomfort) was the lack of bathroom breaks. You can only be unhooked from the machine for 8 minutes and, it's a whole process to unhook and rehook everything. Plus you have to drag 2 really heavy cables into the bathroom with you.
So I would basically go to the bathroom right before they put the helmet on and then I'd do the pee pee dance in my chair waiting for them to unhook at 2:30 so I could run to the bathroom.
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Just a quick note about Benedryl. It was never part of my pre meds either. I take it almost every night to help me sleep and I’m not groggy in the morning. Your mileage may vary. :
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Just got a call from my surgeon with the results of my MRI. My tumor, which was 10cm, is gone. Complete Imaging Response to chemo, meaning the MRI doesn't show any cancer in the breast or lymphs. I am so relieved. She said they sometimes still find microscopic cancer during surgery, but that the scan is the best news we could get.
Also, finally got my DMX scheduled for July 7. It's a little later than I was hoping for, but I am happy that I'll have some time to recover and feel good before I go in.
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Wow! That's awesome Fab4Mom! I'm very happy for you.
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that is so awesome fab4mom!! I bet you are so thrilled!! That gives us all so much hope I know it does me!! So glad you got your mastectomy scheduled and like you said that gives you some time to feel normal again before surgery. I’m so ready to get to that part of my treatment. I am so excited for you and I hope your surgery goes well and recovery is smooth and much easier than chemo
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MNSusan, good to know. I might need it to sleep after surgery.
morrigan_2575, I have heard about Melatonin.
Fab4mom, woohoo. Congrats.
My surgery was just sched. today for July 14th. I'm glad I finally have a date and can start getting eveything and everyone ready.
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Fab4mom - Wow, what great news! Glad you had such a great response and you're scheduled for surgery.
I had my last TCHP treatment on May 28th and saw the surgeon yesterday. I will hopefully have surgery the week of June 22nd. I'm just waiting for scheduling to call. We are trying to schedule it in between my continued Perjeta/Herceptin infusions. My MRI showed my 3.5 cm tumor is now 8 mm. I was hoping for a better response, but I'll take it. They had a difficult time via ultrasound seeing the lymph nodes with cancer, so I have to wait until surgery to see if the chemo worked on them and how many need to be removed. I will be having a DMX skin sparing (not nipple sparing) with TE's. I also need radiation, so my PS said he would fill them weekly until I start radiation.
It's a new chapter and I'm so grateful I'm done with my TCHP treatments. I'm starting to get my taste buds back and looking forward to not being in the 3 week SE cycle.
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i think I'm the only person who's surgeon decided not to do the post Chemo MRI 😔
I hate going in totally blind, wish I could prepare myself for the possible bad news.
Mheibel - I'm going for first solo HP treatment today, I'm going to ask about next one. My second treatment would be 2 days shy of 2 weeks post surgery. I will most likely still have the drains in.
Not sure if that's an issue or not.
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For those that had surgery already or getting ready like me, did your surgeon suggest lumpectomy or mastectomy? Originally, my surgeon was for reduction with radiation. However, that was before they discovered with further tests that I had cancer in my lymph nodes. I had chemo first. I will see the Surgeon again on Monday to see what is next. I'm not sure what they will advocate for this time. I guess I'm just worried they will leave it up to me. I'm not ready to decide this in a few days. I suppose it would be much easier if they just said I needed a BMX.
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morrigan, I’m sorry your surgeon won’t do the post chemo MRI maybe Stress how important it is to you and they might change their mind. My oncologist normally doesn’t do a second PET scan but me and my mom stressed how important it was to us and he’s agreed to let me get another PET scan after chemo. We were happy he took our concern seriously. Good luck with your surgery and please let us know how it goes
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dysonsphere, I’m having the same problem as you. I can’t make a decision on my surgery either. Right now I’m leaning towards lumpectomy. I feel like I can’t make that huge decision right now and need time once I’m better to clear my head and decide then if the mastectomy is right for me.
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dysonsphere, lumpectomy or nipple sparing are not an option for me. All I was able today decide was if I wanted one or both breasts out, so I opted for both. I have read of too many women having undetected cancer on the other breast and I don't want to go through that. The lady that just did my blood test today had that issue.
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@dysonsphere - the original plan for me was Chemo then MRI to determine if they can do a lumpectomy or if I needed a mastectomy. During Chemo I made the decision to have a BMX. This is why my surgeon decided not to do a follow up MRI; he said the whole reason for the MRI was to determine if they could do a lumpectomy and since I made the decision for a BMX there was no point to the MRI.
I understand his logic, why do 1 more test when it won't change the outcome of surgery. Ah well, surgery is next week, no point in doing anything MRI now 😁
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Fab4mom- YAY! Congrats! That is such great news!
Morrigan- I’m sorry the won’t do an MRI. I’d feel the same way as you and would want an idea going into surgery. Good luck with your first HP infusion today!
mheibel- sounds like you had a good response to TCHP! I’m also freshly done with TCHP and looking forward to not having the 3 week cycle of SEs. I’m curious what just being on HP will look like. Has to be better than TCHP!
I had my surgery first, so I won’t know how my body responded to chemo. My PET/CT post surgery showed no sign of residual cancer, but part of me will always be paranoid. The chemo was my “insurance” to get rid of any microscopic cells left in my body. I had a BMX because the size of my mass was too large for a lumpectomy, which made my surgery decisions a little easier. I’m willing to answer any BMX/ implant reconstruction questions anyone has if the info will help to make decisions!
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Great news Fab4mom! And 10cm seems so large.... so that is really encouraging how efficiently the chemo attacked it and that even with a tumor that large there was no spread yet. Must have been a fast grower.
When I met with my Surgical Oncologist right at diagnosis with a 2cm tumor, she stressed several times that lumpectomy with radiation was just as effective as a mastectomy. So that's what I was hoping for. That was before I had my initial MRI which showed another 3cm of "enhancement" around my tumor and at that point a lumpectomy became less likely (due to need to get clear margins and just how much would need to be reconstructed.) Then I found a genetic mutation, so double mastectomy became my solution. She still wants an another MRI before she sees me post-chemo, but I'm not sure if she knows about the genetic mutation/double mastectomy.
None of my Drs. have mentioned sending me for a PET scan at any point yet. I'll have to ask when and why they use that.
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ajminn3, questions I have lol
I'm assuming you didn't have TE put in, you went straight to implants. How long where you out of commission for? My cousin is coming down and help me/us for the first week. Then my fiance will be off for the two weeks after that. How were you after three weeks? I'm worried that I will still need help.
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I would say by week 4 post surgery I was feeling pretty good with my pain under control. I had lift restrictions for 6 weeks, meaning no lifting more than a gallon of milk or reaching above my shoulders. Once the drains are out, your range and movement ability goes up a lot. Drains come out once your fluid output is below a certain cc measurement (they’ll give you all of these fun instructions and teach you how to strip drains). My drains came out 2 weeks post surgery. I was definitely tender and sore those first few weeks, with the first week being the hardest, but honestly by week 4 if I had a job that wasn’t so physically active I would have gone back. I was also fortunate that I didn’t have any complications following my surgery, which also made things go more smoothly.
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