Starting chemo February 2020
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I’m day 6 post round 6 TCHP. My MO lowered my taxotere and carboplatin slightly this last round to try to avoid such harsh side effects and because my counts were a little lower than they usually are. So far side effects seem to be a little better than round 5. Def fatigue, sore, no appetite, blah...but much less of the relentless explosive diarrhea that happened last time. I’m just repeating to myself, “last time, last time, last time” as I try to lower through this next week or two before hopefully turning the corner. I truly hope I won’t ever have to do this ever again, but my paranoia and anxiety creeps in a lot lately.
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day 15 bloodwork.
So my WBC bounced back, and my platelets are in the 80 range but, my hemoglobin dropped from day 8 bloodwork.
My MO says it's OK to skip HP next week if I wanted to, in order to give my body a week off before surgery but he recommends going for it.
He said, worst comes to worst he'd send me for a pint of blood before the surgery to boost my hemoglobin but, he doesn't think it's necessary since HP doesn't impact Hemoglobin or Platelets.
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ScatteredEnergy - Hopefully it's just a side effect of the chemo
Finally met with the breast surgeon and the plastic surgeon. I was told I'm basically a candidate for all types of reconstruction, straight to implants during mastecomy (even though I'll need radiation), expanders and implants later, or expanders and then flap surgery. I'm so conflicted. A big part of me wants to get the implants and be done, but the plastic surgeon said there is a 50/50 chance that they would need another surgery to fix them up later because radiation messes with the symmetry. I am fairly thin, but keep all me weight in my stomach, so a nice tummy tuck/breast flap surgery sounds good in theory, but it's such a massive surgery, that i'm a little afraid. Or just get the expanders and then implants later.
I still have a tumor that they can feel, which is also freaking me out. It could be active, it could be dead cancer cells. But the big thing for me is to beat the cancer, I don't think I care too much what I look like in the end. Just that I don't want to be totally flat because I'm only 43, and I think it would be so hard to dress and deal with that for the rest of my life.
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@Fab4Mom - I had a Tuck and Breast Lift many years ago. The Tummy tuck is a bit of a bitch. I remember just having to do everything in slow motion so I didn't aggravate it. Plus I hated the compression garment I had to wear.
I'm not saying this to scare you. I'd do it all again because I love the results but, I wasn't prepared at the time.
One of my friends who had a BMX 7 years ago has had a few surgeries to get her boobs "right". Her PS insisted she keep her TE in for a year post Radiation. So she had her TEs in for 1.5 years before the exchange. She's also had a few surgeries (fat grafting) to fix the boobs. It's funny but, until she mentioned the pain for the liposuction it never occurred to me that fat grafting would hurt.
I really wanted to go straight to Implants to limit the number of surgeries. At the same time I understand there are down sides to going to straight to implant if your skin can't support it.
It's good you have options. I like the DIEP mostly because I don't have to worry about replacing anything every 10-15 years.
Just remember other than straight to implant vs TE you don't have to make an immediate decision. In fact, going TE might be a good idea to give you time to decide what you really want.
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Fab4mom, hence why my PS doesn't want to put the implants in until I'm done with radiation. He wants to make sure they look the same as much as possible.
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Wow, I can't believe it's been 4 months since we started this chemo journey! Honestly, it has been worse than I thought it would be. I can now say I know the meaning of suffering. Honestly, I have felt "okay" around 5 days in the last 4 months. But now I'm down to 2 more rounds. I will see surgeon on 15th to see where we go from here. I just wanted to take a moment to say all of you guys are awesome and don't forget it. I don't know how you guys feel, but I am a different person. I don't look the same, I don't think about life the same as I did pre cancer. I just hope everyone is staying positive. HUGS.
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You will still be numb from surgery. I had my bilateral mastectomy with TEs on Jan 13 and started will fills a few weeks later and it didn't hurt at all. You might have some discomfort from the skin stretching, but no pain from the needle.
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Dysonsphere- I’m with you. Points of this “journey” have been harder than I anticipated. I agree, we are all awesome! Some days I still can’t believe I have/had cancer. It seems surreal. I am very much a different person with a different outlook. I’d like to say I’ve changed for the better and have a new, positive outlook on life, but the truth is while I feel fortunate to be alive and (hopefully) won’t have to deal with cancer again after this, I sometimes feel angry and bitter I’ve had to go through it. I’m stronger and give less craps about what people think, but I wish I never had this happen. Most of the time my positive outlook outweighs the negative, but I won’t pretend the negative isn’t there. Especially when family and friends try to spew their toxic positivity at me constantly haha.
I’m currently sitting and getting some IV fluids in before the weekend. Just a little boost to help me over this round 6 hump.
Fab4mom- I did direct to implants and have been happy so far with my outcome. I do start radiation on 6/15, so I’m nervous and curious to see how that may impact my symmetry, skin, etc. with implants. Everyone on my team (PS, MO, RO, nurses, etc) have told me they don’t expect complications or anything with my implants and radiation, which has surprised me because I hear so many stories (online- maybe I need to stay off google) of capsular contraction, skin tightening, symmetry problems after radiation , etc. I’ll be curious to see what happens and will keep you all updated as I embark on that “journey”.
Scattered- with a MX you’ll def be numb and won’t feel a needle going in. I had fluid drained after my BMX and didn’t even realize they had stuck a needle in at all to pull the fluid from my breast. Even 5 months out I am still pretty numb and wouldn’t feel a needle going into my breast or side of my breast. It’s strange, but part of my “new normal” along with no nipples. Debating some fun tattoos instead of nipple tattoo or reconstruction. Why not!
I hope you are all well
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i have a feeling I won't process having/had cancer for awhile now. I tend to be goal/task oriented so I'm always focused on the next step (surgery), then the next step (HP, Kadcyla), then the next step (exchange).
I'm guessing I'll have a cry fest in September (my BDay), December (Mammo) or January (diagnosis).
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I'm still waiting for my cancer diagnosis to change me for the positive in some way, but so far I've just been eating very badly, getting out of shape/laying on the couch a lot, being totally unproductive (not living life to its fullest), and crying, crying, crying. Of course some of the change has to wait, but I feel like that will be one of the harder things about this - managing the expectation that this experience will change me for the better in some way - give me a "new take on life" - cause me to take better care of myself and "live life more fully". (and whose expectation is that anyway? probably my own)
Interesting that straight to implant is an option. Hadn't considered that. It would be tempting, but I would probably take the longer route with the hope of a better end result. What do we do in the meantime while we're getting and recovering from radiation? Wear prosthetics? Go flat?
Round #5 has not been that bad for me, what with the extra week of recovery (low platelet delay) and the reduced % of carboplatin. I think my hair started growing back that extra week between round 4 and 5. I have peach fuzz all over my head. I wonder if it will fall out again in a couple of days. 11 days left til Round #6.
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Scattered Energy - I went the went the IV route (instead of a port). My veins were good and I didn't want another surgery to put the port in. In hindsight, I should have got the port. The taxotere killed my veins and I didn't realize that if they take lymph nodes from surgery, you can never use that arm on the surgery side again for blood pressure, IVs, etc. So, my right arm bore the brunt of it. I still have tissue damage and bruising/scarring from the treatment (nurses think with the second treatment that I had extravasation and that I was going to have long term tissue damage). I have scar tissue in my veins that has lead to little lumps where each IV was placed, even the non-chemo fluids seemed to have caused some damage). So, if you can still use both arms (looks like you haven't had surgery yet), I think you should be able to make it through 3 more treatments. Hugs!
Hope everyone is doing well. For those done with treatment, hope your surgeries go well.
Thank you everyone for the kind words and thoughts. I feel better each day. I started tamoxifen this morning so hoping I continue feeling good!
Have a great weekend!
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Scattered, I had a tissue expanders placed before chemo - and a leak developed in one of them and so I had to get a "refill" before my chemo sessions. The needle for the fill does not hurt at all - you do not feel it and there isn't any cream that you need to use. The only discomfort that I had with the TE is that the one on my right would get really hard - it was like a muscle spasm. More annoyance than anything else. Now that the implants are in I feel much closer to 'normal'..... whatever normal is these days
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Scattered, I had a tissue expanders placed before chemo - and a leak developed in one of them and so I had to get a "refill" before my chemo sessions. The needle for the fill does not hurt at all - you do not feel it and there isn't any cream that you need to use. The only discomfort that I had with the TE is that the one on my right would get really hard - it was like a muscle spasm. More annoyance than anything else. Now that the implants are in I feel much closer to 'normal'..... whatever normal is these days
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cathyh1966, good to know. Thanks.
dysonsphere, the process has been super hard. I also have two chemos left. I already saw my PS and my appt. w/ the breast surgeon is at the end of the month. I'll be having a bilateral masectomy with TE, and no nipple sparing.
cathyh1966, good to know. I'm so scared of this surgery. I was so happy going in for my tummy tuck in 2017 but I don't have the same outlook for this one.
ajminn3, good to know about not feeling the needles going in. Regarding this process, I feel much more negative about life and my future. I'm seeing the glass half empty most of the time. Reg. the nipples, I'm still deciding if I want nipple reconstruction or just have them tattooed. I just don't like the fact that they will always be erect. I have a long time to think since my PS says we have to wait three to six months after the implants are placed in.
micdpowers, same here girl. Not feeling positive at all. I feel like my time on earth is now limited and it sucks. I feel like I need to do everything I wanted to do before because who knows how long I'll be alive. It is hard.
Cricketdog, I'm sorry you went through that. That's my fear. I had chemo yesterday and the port decided to work. Two more to go.
Maddy83f, I'm glad it doesn't hurt. I'm tired of feeling pain on top of worrying if I'll like my breasts after. I love my natural breasts. This sucks.
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Day 18 of Final Chemo and I feel great. I have my appetite and energy back. Food tastes mostly good, I can drink Seltzer again. I have a bit of bitter taste with some food but, I started using plastic utensils again and that seems to do the trick.
I hope I feel this good tomorrow. My plan is to head up to Home Depot and get my veggie plants for the summer. I figure if I got at 6am when they open, wear a mask and gloves I should be safe.
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I’m on day 3 of second AC chemo. Feeling nauseous and tired today. Just keep telling myself 2 more chemos to go. July 2 can’t get here fast enough!
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hhray - You've got this, just get through June and chemo will be done! That's what I told myself through May, and it really helped.
mmorigan - I'm so happy you are feeling good! I've been working in my garden like crazy during cancer and the pandemic. When I was first diagnosed, I found a book to read with my kids called "The Goodbye Cancer Garden" and it was a beautiful story of a mom going through treatment, starting in January, and by October she was done and her pumpkins that she planted with the kids were ready. My kids really connected to it, so I'm extra motivated to keep the garden this year, and have them help. Also, I think you said you often still can't believe you have cancer. I feel that way too. The chemo makes me feel crappy, but otherwise, I just can't wrap my brain around it some days.
ScatteredEnergy - I'm pretty nervous about surgery too. I usually don't get to nervous about procedures, but this is big and after the chemo, it's hard to imagine getting knocked back down healthwise.
Cricketdog - I'm glad you are feeling well. I'd love to hear how tamoxifen goes after you've been on it for a little while. I read so many dramatic posts about how bad it is.
micdpowers - I hear ya, it's so hard to feel positives coming out of this. Really hard. I think most often I feel sad and angry that I got stick with this. And mad for my kids, because they don't deserve having the "sick mom". And I think they've adjusted so well, but it's everyone else too, sometimes the pity of it all, it makes us all uncomfortable. I don't feel that different like I need your pity.
I'm on Day 13 of my last chemo and feeling a lot better. Last night, my hubby and I had a "date night" at home. We have a back porch room that's detached from our house (it's hard to explain). Anyway, we ordered pizza for the kids and left my 12 and 14 year olds "in charge" and went out to the porch. Ordered nice fajita dinner for us, ate out there, played a board game, disconnected from our phones and the world and it really felt like a date. The food even tasted good. Of course, chemo and cancer had to give me a reminder by sending me running for the bathroom afterwards, but thankfully I was home and my hubby understands, so it didn't ruin the night. We also went out to two furniture stores yesterday, my first time in any type of store since the stay at home started here in IL. We were planning on getting new furniture for a living room before all the craziness, and the stores are finally back open here and I felt safe enough because they aren't so crowded and everyone wears masks. So yesterday felt like the most normal day I have had in a long, long time. We also ordered a new couch, which will be delivered in July. I like having things to look forward to.
I go in for an MRI tomorrow. Very anxious to hear what the doctors see on it, and how big the mass they feel is left. Everyone can still feel something, and I'm just hoping it's alot of dead cancer/scar tissue. I know we won't know until surgery. And, after flip flopping over and over again, I've decided to get expanders, and delay reconstruction with a flap. As my husband told me, my whole life, I've struggled with my belly. Now, I finally have a chance to get it fixed for free, and give me a long lasting breast, so it seems like the only choice. I'm confident I can bounce back from the reconstruction.
I'm still and always anxious about long term with cancer, but going to spend today trying to focus on what I have and the people around me. One day at a time is where I'm at these days. I have so much that I'm grateful for,and cancer can't change that.
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"And, after flip flopping over and over again, I've decided to get expanders, and delay reconstruction with a flap. As my husband told me, my whole life, I've struggled with my belly. Now, I finally have a chance to get it fixed for free, and give me a long lasting breast, so it seems like the only choice. I'm confident I can bounce back from the reconstruction."
I would have liked this as well but, having the previous Tummy Tuck eliminated this option. Maybe by the time I need to replace the implants something new will be available.
Best of luck Fab4Mom!
I decided to go to Home Depot on Tuesday at 6am, I worried about the weekend crowd and Monday is a late work day for me. I live in a townhouse so my garden is potted plants on my patio but, I get good veggies in the summer.
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morrigan_2575, I had a tummy tuck as well but my PS said he can lipo other parts of the body to fill the breast more. So I want him to lipo my back and stomach lol
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@scattered energy - I asked my PS about pulling from the back and buttocks but, he wasn't keen on the idea.
I figure I have time. If I really don't like the implants or have major issues i can always look for a new PS that's willing to perform a DIEP.
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fab4mom, thank you that’s what I keep telling myself just make it through June. Almost there. Knock on wood, I’m hoping this second cycle I can control my symptoms a lot better than last cycle. The nausea doesn’t seem to be going anywhere though even with nausea meds. And the fatigue but I’m hoping I can get ahead of the leg pain and mouth sores. I’m doing delayed reconstruction with diep flap too. Also excited to get rid of my tummy. I lost 5 pounds this last time I was Weighed which was odd before for some reason no matter what I've been gaining a pound a week just about and I was just thinking I'm happy to lose the weight but it's gonna take away from my new boobs if I lose it in my stomach. But on the other hand I really don't care what size I end up with. Ideally I'd like a full B cup cause right now I'm a sad deflated looking D but if I can only get an A cup out of it I'll be fine with that as well. I'm hopin I don't have to have radiation so I can get my reconstruction sooner but I won't know that until after surgery path report comes back
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hray - it might defeat the purpose but, they can do a DIEP with implants in order to get a bigger size.
Good Luck finishing Chemo. You can do this!
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morrigan_2575, I'm so scared I wont like my breasts.
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morrigan, that’s a good idea! I’m wanting to avoid implants though.
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my hair just started falling out... I shaved it clean back in my taxol days probably a little too early but it was falling out and it was all I could control at the time. The past 3 months it’s been slowly growing and today is day 4 of my second AC treatment and it just started coming out what little bit I have. I knew it would happen just kinda bummed cause it took so long to grow this little peach fuz
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hray1993, you got Taxol first and then AC?
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yes I was on a clinical trail and they needed to do taxol first to see how the clinical trial drugs were affecting the tumor. So I did clinical trial drugs and 12 taxol now I’m on 2 out of 4 AC I thought taxol was rough but I was way wrong. AC is no joke. It’s really taking a toll on me
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hray1993, girl AC is the devil. Hence why I disappeared from here during it.
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Hray- you were getting vaccine injections directly into the tumor, right?
Also, yeah I figured the whole appeal of DIEP is to avoid implants. I just figured I'd throw it out there since I don't think many people know of that option.
Scattered Energy - It's funny I've never stressed about the surgery. I was always freaked out about the Chemo. I hope I'm happy with the results, I think I will be.
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morrigan, yes i was getting injections directly into my tumor. I feel like they helped to shrink it the most. Once those injections stopped and I was just taxol only for 3 weeks my tumor built up a resistance to the taxol and doubled in size. Then we started AC. When I started AC my tumor was almost 6cm x 5cm. That was on May 21st. When we checked it by physical exam on the 4th it was 2.5x1.5cm so AC is really kicking it’s butt. I have an MRI on the 11th to see what the scan shows. If AC didn’t reduce it we would stop after the MRI and go straight to surgery but it’s so small now I can barely feel it so i believe we will continue the last 2 AC treatments before surgery. I try to Be thankful that it’s working when I feel so ba
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