Starting chemo February 2020
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Welcome Joan, sorry you’ve found yourself here again. I’m also doing TCHP and similar to Morrigan my side effects cycle with my good days usually days 14-21, then back for more!
Tamijean- some people are so insensitive and selfish. I’m sorry you had to deal with that. May your surgery be smooth with an easy recovery!
Morrigan- May the 4th be with you too!
I had my MUGa scan last week and got the results today. My heart is actually “stronger” that it was the first scan. It was the laugh I needed today. I’m thankful my heart is handling it well so far. My family has a significant heart disease and heart attack history (lost my dad and 2 grandparents in their 50’s to its) so that’s been a concern of mine. My anxiety is ramping up for round 5 on Thursday. I know it brings me closer to the end but I’m dreading the cycle of side effects. I also am having a hard time with anxiety around reoccurrence. I need to get into my therapist here soon..
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ajminn3- Yay for your heart!! I’m sorry about the anxiety. I hope you get to see your therapist soon. I’d like to know what people do to control the recurrence anxiety.
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"My anxiety is ramping up for round 5 on Thursday. I know it brings me closer to the end but I'm dreading the cycle of side effects"
I had the same feeling and, was really in a funk going into treatment. It wasn't until they suggested a week delay that I embraced it. I hated have going to through it but, the idea of dragging this out even longer was worse.
"I also am having a hard time with anxiety around reoccurrence. I need to get into my therapist here soon."
I think this might be normal, I'm feeling the same way. At first I just focused on getting through Chemo and since that was about 5 months worth of dealing I didn't think about the after. Now, I'm at the end of the treatment and working on surgery, which doesn't scare me the way Chemo did.
I start thinking it's almost over, just a few more weeks, then surgery and the worst is over. This inevitably leads to the "after", then we wait...wait and see if it comes back...wait and see if I get a new one...just wait...wait...wait.
As much as I hate the Chemo there is some comfort in knowing the drugs are in my body, attacking the cancer. Once I'm off chemo, I'll still have HP or Kadcyla for a year which will help fight/prevent the cancer but, then....the after really is scary right now
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Hi Morrigan, I'm new here- wish I found this website/page sooner, the page is full of truly kind/caring/ Supportive women.
I feel the exact same way and have treatment #5 of 6 (docetaxol & herceptin) tomorrow. Just last week I started to think about next steps; surgery, spread, how to get back in shape after chemo/surgery etc. I think your correct; I concentrated on just getting through chemo that I didn't think about anything else. I have my Pre-surgery appt on May 13th to discuss options and book a surgery date. Most likely at lumpectomy due to start with.
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Hray, I can understand your being scared of the AC, it is a bit more difficult than the Taxol. I had 4 biweekly rounds of AC and I'm on my 5th week of 12 I will have forTaxol. You will get more IV meds to help with the nausea and I know that I had prescriptions steroids I took for 3 days following the chemo. I took zofran, steroids, previcid (for the stomach acid) and claritin to help with the shot you get for the white blood count. I think the most difficult thing for me during the AC was to drink plenty of fluids. I had to get IV fluids on the following week every time because I was weak and dehydrated. If you can be sure that you stay ahead of that, it should help! Stay positive. Everyone is different, but it was harder for me than the Taxol that is for sure.
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1 week out from Treatment #5. My platelets bounced back to over 100. My WBC was low but that always happens, it bounces back by week 2 (usually). My Hemoglobin dropped, it was sitting at 10-11 for the last several weeks. It explains why every little thing exhausts me. Just walking upstairs tires me out.
My MO says i should be good for #6 on 5/20. Says I made it all this way and, doesn't want to delay. However it depends on the results of my Echo next week. Although, I'm sure my bloodwork day of will also factor in as well.
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I’m a treatment behind you, morrigan and so looking forward to being done w Taxotere and the Dignicap! The cumulative fatigue is frustrating for sure. I’m hoping the infusions of H/P are no big deal.
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Sitting at infusion #5. Blood counts were a little lower than they usually are for me, but not concerning. All other blood work looks good so I’m moving ahead. I got set up to meet with the radiology oncologist next week to consult and start planning. That won’t start until a month out of round 6. My MO says he expects my immunity to be in fairly good shape a month out from round 6, and that H/P shouldn’t impact that and should be much more manageable side effects wise with the TC dropped. Trying to stay positive as I reach these last tough rounds. Still trying to manage my anxiety and not obsess about every little pain in have in my body.
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Yay for getting #5 behind you, ajminn3. It’s also nice to hear your MO thinks your immune system will be back in a month. I was wondering too.
We’re still in FL until early July. I’ve got an appt with an oncologist in Stillwater who will oversee my treatment while we’re there. We’re watching the covid statistics closely. We feel pretty safe here.
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@MNSusan - you know the dignicap doesn't really bother me, I actually fall asleep after the taxotere (stay awake to ice my hands).
Yet every week as I get closer I start to dread the stupid cap. I'm glad I did it, kept my hair, even if it's going very grey. However, I do have an emotional reaction (like going to the dentist) about that cap 😁
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MNSusan- I think you’ll find yourself feeling pretty safe here too (hopefully it stays that way until July!). I love Stillwater- such a beautiful city. We were just there last weekend and walked Brown Creek Trail. I’m at the Maplewood clinic and they have a lot of safety precautions in place and have very few covid cases.
Morrigan- I laughed at your dentist comment...I have such an intense (honestly irrational) fear of the dentist. It took a lot for me to force myself to go before starting chemo! Part of me wishes I did the dignicap. I’m sure I’d feel a little better still (mostly) looking like myself. The no hair is tough, but I got used to it. I don’t rock the bald look, but I don’t mind scarves as much as I thought I would. I’d just really like to wash my hair in the shower again. The little rhings
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ajminn3- I’m so ready for my hair to grow back! I don’t rock the bald either, but I like some of my scarves. I’m afraid they are going to get really hot pretty soon. Unlike you, I’m glad I don’t have to wash my hair! Showers are really fast now.
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I am not sure where to post this, so since you are all about at the same point I am, I will ask here...
I just did chemo #5 two days ago. My oncologist said my mastectomy would be about 4 weeks after chemo #6, so about 7 weeks from now.
I am just so confused about reconstruction. My breasts are large, and I am chubby. For a while I was thinking I would just be flat on one side and not do anything to the healthy breast, but in the last week I keep thinking about the frustration of being so uneven. I don't feel attractive in high necked tops. I usually wear scoop or v necks. Do I really want to go through the next 20 years or more with only one breast and the challenges to finding clothes that would create.
But, do I want to go through the pain of multiple surgeries to try to create symmetrical breasts via reconstruction, and do I want surgeries on my healthy breast to try to get it to look like my reconstructed breast. Do I just have them take my healthy breast too or is that double the pain?
And the other confusing thing is whether I just do what the oncologist says, or do I question the standard protocol. My tumor started quite large, 8cm, but disappeared completely after 3 rounds of chemo. I want somebody to explain WHY I have to stick to protocol given I had a great response with just 3 rounds of chemo, and will have had 3 more before the mastectomy. I would like somebody to explain to me what risks I would be taking if I did a lumpectomy instead of a mastectomy, and tell me if I did a breast reduction on the healthy breast, would that be covered by insurance.
Any advice on how to figure out next steps?
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Hi TaraMom22. I've been thinking about these same things, - faced with having my right boob removed and reconstructed.... what about the lefty? Would it remain a 45-year old looking boob? Would insurance cover that one for either making it match or replacing it too. I never really considered not having reconstruction on the one being removed - though I get the appeal of less surgery. And now, with finding I have a high-risk genetic mutation - I'll probably just have a double-mastectomy.
I'm coming up on round #5/6 and will be meeting with surgeons soon. Not sure if I will need radiation too (though I think surgical oncologist will lean that way) and I know that is going to further draw this whole process out. Trying to learn about flap reconstruction (nice to get rid of some excess fat elsewhere on my body! but then have more spots to heal) vs. the gradual pump-ing up implants route. I recently browsed these resources that you might find helpful.
I can't post links so...
Reconstruction Decisions (on this site)
google "members share their reconstruction decisions"Does insurance have to cover reconstruction of other breast to match?
cancer.org has an explanation of what has to be covered (and yes)Does insurance have to cover prophylactic removal of healthy breast?
no federal law; depends on stateWhat do reconstructed breasts look like? - there are photos on this site showing lots of different ones
google "pictures of breast reconstruction" (found some on this site)0 -
@Taramom - Fantastic that you had such a great response to Chemo. I think there are many options available to you and, you can always ask your Dr but, in the end it's your choice.
I know many women seem to go for BMX for peace of mind (less chance of a new primary). The really good news is you don't have to make a decision now (beyond lumpectomy vs mastectomy). You can choose to go flat and then get reconstruction later. You can choose a unilateral now and, then do lift/reduction/2nd mastectomy later. I would meet with your BS and your PS talk it over and then make a decision.
As far as sticking to protocol, keep in mind that the Chemo for HER2+ isn't just to shrink the tumor, HER2+ has a tendency to spread and come back metastatic. The next 3 cycles should hopefully clear out any potential micrometes floating around. The really good news is you won't need Kadcyla if you have a pCR, you'll just finish the HP. 🙂
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Taramom22- I had a BMX with reconstruction before chemo. My surgeon said there isn’t much statistical difference between lumpectomy or mastectomy. My tumor size was too large and would have been disfiguring to do a lumpectomy. I ultimately went for the BMX because I wanted symmetry as much as possible with the least amount of procedures. I couldn’t see myself going back and having more surgeries with my job and having small kids. I also went direct to implants. Going into surgery this was not a guarantee as they needed clear margins (top priority!) and weren’t sure if there would be enough skin spared. Ultimately there was and I am a small B cup (used to be DD). I had no complications with healing. I am overall happy at this point with my decision. I can get revisions if I want, but will have to replace them 10-15 years down the line. I do have to get radiation (didn’t know that at surgery time) so I’m not sure how that will effect things. It’s all such a hard decision. I do know that in the US insurance has to cover symmetry and surgeries related to it.
In other news, I had round 5 last Thursday and it’s been the toughest round yet for me. Yikes. Lots of blah and a little nausea (hadn’t had much before). I slept most of Mother’s Day.
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For any of you guys on neoadjuvant chemo, has your MO or Breast surgeon mentioned how long you will need to wait after chemo to have surgery. I don't have an appointment with surgeon til the last week of my chemo so I'm curious how long I will need to wait for the next step. I am on disability and I would hate to return to work in the middle of this treatment because of timing.
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dysonsphere, I am on neoadjuvant chemo and I asked how soon to expect surgery after chemo and they said it’s normally about a month from last chemo to surgery. It could be different at different places but that’s what I was told. I’ll finish chemo July 2 so I’m kinda planning surgery to be early to mid august
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Dysonphere - at my 5th TCHP, my oncologist and nurse said my surgery will be 3-4 weeks after my last chemo. It seems quick because I haven't met with my surgeon or had any scans yet. No checking the heart or the tumor besides doctor checking it with his hand. They also said as soon as I finish my last TCHP, I should be back to total immunity in about 3 weeks. Although I have had really high WBC through chemo. I struggle with plateletes and anemia.
I'm also feeling the anxiety that so many of you mentioned. I was so good with get through chemo. Now it's dragging and when it's done, I have no idea how well it's worked or if I'll have a recurrence. I know that with Her2+ recurrence is common. I'm feeling really worn down, and I just want to be done with this. My last chemo is 5/26 and it feels like a lifetime to get to it, and then through the side effects. And then I have to get moving on surgery.
I'm very uncertain on what I want for surgery either. I haven't met with the surgeon, so I don't know my options. I'm afraid to be laid up all summer with difficult surgery and recovery. And putting myself further at risk for Covid. I sort of want to chop them both of and go flat, and not have to worry about all the reconstruction. But then as I move past this, I think my body would always look strange, I don't have a good flat shape. And I know my husband would prefer that I reconstruct.
I guess this is just such a huge rollecoaster for all of us. I am trying to take it one step at a time but some days are so hard!
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Fab4mom, I’m having a lot of the same emotions as you. I keep going back and forth between lumpectomy and mastectomy I just can’t decide. I’ve also had some side effects from taxol and I’m starting AC next week and I’m pretty scared of the side effects that come with it. Plus I’m young, 27, was 26 at time of diagnosis and feel like I have so many years I have to think way long term about everything. It’s hard.
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@dysonsphere - like others, my MO and BS said 3-4 weeks after my final Chemo for surgery. I met with my BS 2 days before treatment #5 and I will meet with the PS 1 day after Treatment #6 (it was the first available, offices were closed for awhile).
I've been pretty set on my surgical plan, BMX with Implants. I don't feel up to major surgery (pulling from source locations) at the moment. I can always plan for a larger surgery in 10-15 years when I have to replace the implants. If I'm happy with the implants I can always stick with them.
Treatment #5 was weird. It hit me hard in the fatigue department. However, my other SE (weird mouth issue) didn't hit at the normal time. Usually my bad days are Sat-Mon, with Tuesday starting to improve and by Thursday/Friday I'm almost normal. This week I was fine Sat-Mon, the mouth thing hit Tuesday and stayed through Thursday.
Anyone else find that they're appetite doesn't really return now? Cycles 1-3 day 14-21 I was eating everything. I would lose 5 lbs between Days 2-10 and between 14-21 I'd usually gain 2-3 lbs back. With Cycle 4 and 5 my appetite just doesn't come back.
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Morrigan- I’m with you on the appetite. Mine has not recovered as nicely as my rounds have gone on
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@ajminn - did you downsize to a B Cup because you wanted to or was the due to the direct to implant and how much skin you had available?
I asked my BS about nipple sparing BMX and plan to talk to the PS about nipple vs skin sparing and direct to implant vs TE. I'm guessing since I'm a D Cup and want to keep the D Cup I will end up needing TE.
The only debate I keep having is with Nipple reconstruction vs tattoo (cherry blossom or Dog Wood).
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mmorigan - are you having radiation? I'm so clueless about the surgery, they have literally discussed nothing with me yet, it's making me crazy. I'm not sure if I can go right to reconstruction because I need to have radiation after surgery.
Also, my side effects are different every single time, but they are transitiioning later for me to. I'm on day 7 now and my fatigue is so bad. It's just a total lack of energy. My mouth tastes awful and the appetitie isn't there. I'm ready to be on the upswing, I got up today and tried to stay busy, but just basically gave up. Between being stuck home and the fatigue, it's so hard to stay motivated. And I'm usually a very motivated, never sit down kind of person.
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@Fab4Mom - Radiation is uncertain. So far they say no because nothing indicates Node Involvement. However, they won't know for sure until they do the surgery. Which is another reason why I will probably go TE.
I think if you need radiation it's better to do the TE because Radiation can impact the implant/breast. You can have TE/Reconstruction with radiation. Everything I've read is that they deflate the TEs prior to the start of radiation and, then start filling them back up after you're done. My friend had to wait 6 months after radiation before her PS would exchange the TE for Implants.
If I don't get radiation then i would end up waiting 3 months post BMX before the exchange.
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Morrigan- I opted to go smaller in hopes I could do direct to implants, which may have not been likely if I stayed my same size. I actually quite prefer the smaller chest! Post surgery my plastic surgeon said I can go larger in the future if I want when I do revisions, but I honestly don’t think I will. I’m waiting on how radiation goes to see what kind of revisions (hopefully none will be needed?) I’ll need. If I had known there was lymph node involvement I probably would have done an expanded in my tumor side, but we didn’t know. I’m hopeful my implant/skin will be okay on the radiated side, but it’s hard to know
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Thank You. I will be sure to talk to my PS about options. I'm not sure about going smaller but, it's something to consider as I would like to limit the number of surgeries
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Well, after 6 doses of Taxol, I have what I would call constipated diarrhea. Has anyone had that? I feel like I have diarrhea and the urge to go, but nothing happens. I have also felt really tired and have slept all day for the last 2 days. I was having a much easier time with Taxol than the AC so I'm not sure what to make of it. Up until a couple of days ago, everything was normal. I had my infusion on Thursday. ;-(
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I get constipated diarrhea pretty much every time. Stomach cramps and gas and then constipated. I use senokot at night, helps a lot. It lasts a few days and then I usually switch to just diarrhea. I'm on TCHP though, so different drugs. My nurse told me I could use GasX too if the pressure is bad during the constipated phase.
I was hoping today would be the day I start to feel more normal, but then I got hit with stomach cramps and fatigue bad again. I really wish I could go out, not having anywhere to go makes it so hard to push through the harder days. I get up, putter around the house with chores, maybe hop on the treadmill, but my energy is low and my stomach bothers me. So I end up reading or just generally feeling bored. I'm trying to keep up with the kids and helping at school, but it's hard when I'm having stomach issues. So my husband will fill in. I'm fortunate I don't have to work through all this, but sometimes I wish I had more to help keep me feeling useful. I just feel like I'm dragging through the days.
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I don't get constipated. Pretty sure the Perjeta is responsible just diarrhea but, the meds they gave me help, much better than Immodium.
Today is day 14 and, I'm finally feeling pretty normal. I still get worn down as the day goes on but, nothing like the fatigue I was experiencing.
Still don't have an appetite, food tastes fine just can't eat a lot. Very small portions.
Went for my Echo today, hope it comes back OK for next week. Will get labs drawn tomorrow. Here's hoping my counts are all up 🤞🏻
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