Who is starting chemo in September 2016?
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Hi all,
Just checking in since I haven't posted in awhile. Emily is 1 month out from her last TCHP and she is still having problems with neuropathy in her feet. This last round seems like it was the worst. After the previous 5, she'd get some feeling back just in time for the next treatment, but this time it has not improved. I hope you are right misslil, and she starts getting feeling back soon. It is driving her crazy. Other than that, she is doing pretty well and hoping to see signs of hair regrowth. She had her tumor removed before the chemo, so she is only doing the Herceptin and radiation now. No SEs from the Herceptin after her first infusion post-chemo. It took about a month to heal from the surgery, but her tumor was small (2 cm) and they just did a lumpectomy along with removing 3 nodes.
Sorry I haven't been posting regularly, but I have been following your comments. With the holidays, work, and the grandbabies all being here, there doesn't seem to be much free time.
Sending healing thoughts your way and hoping you are all feeling better! Congrats to all who are moving to the next phase of your treatments!
THINK HAPPY THOUGHTS!
Sam
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Nayda....I have my surgery in 2 weeks. Can I ask a personal question (feel free to not answer if you are uncomfortable)...what made you choose no reconstruction? I have been debating reconstruction / expanders / and no reconstruction all b/c of a node in my chest wall. Are you doing radiation?
Sam - I am glad to hear that your wife is doing well!
hahlyn - I also have neuropathy in my feet (especially after a long day).
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Denny
I don't mind answering that lady😃... I am just so ready to be done with this whole BC....i feel like I done had my babies...i am married and I done had my fun with my breast...lol!... Now they trying to kill me... Lol... My husband respects my decision....he says he loves me with or without them.... I am not saying I won't miss them now... I know I am going to have many cries after the surgery....now if didn't have any kids... Or a husband.... I would definitely do the reconstruction.
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I don't know if I am having radiation....i am going to ask my Onc tmrw.... I hope not.
Hi Sam and Emily! Glad y'all popped in.
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Hi Sam
Glad to hear Emily is doing okay with the exception of the neuropathy. It is horrible driving me crazy as well. The 6th treatment of tchp really did me in with the neuropathy. Hoping it gets better. Glad to hear no SE from the herceptin only that gives me hope.
Take care
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nayda- curious about the black feet and hands...as I wonder if I'm getting them. Do you mind sending a pic of them?
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134 days in chemo, 30 pokes, 16 infusions, and approximately 56 hours in that chair I am happy to say I am DONE WITH CHEMO!!!
I had to cry when I left the infusion center today though. They asked me if I wanted to ring the bell signaling the end of chemotherapy. I told them no because I have a new worry. I don't know if I am truly done now. I have to have a follow up mammogram and ultrasound next week to have something checked that I have been noticing. NP told me it could be something called lymphatic tethering, which I have never heard of, but also hinted that the creases and lines in my skin that I am seeing could be an indicator of something much worse. I'm so scared this is going to be a repeat of what I just went through in July when I was diagnosed. It's all setting up just the same. It's like deja vu. Good thing I am full of steroids from today's last chemo. I will be wide awake to worry all night.
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Hey ladies!
I haven't been on in a while, but wanted to get updated on all of your progress. My last chemo was 11/10, and my last radiation will be next Tuesday and after that its just hormone therapy and deciding if I want to reconstruct what I had removed. I'm so happy to see all of your progress. I haven't completely caught up, but wanted to say hi
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Hi,
Nayda - I had BMX, no reconstruction Sept 1 followed by chemo 4wks later. Everyone is different in terms of recovery, but I stayed home for three weeks and went back to work parttime the following week. That Friday was when I started chemo. I worked fulltime after that (when the SEs allowed). Most of the pain was in the first week. After that it was mostly tightness in the incision area and just general tiredness. Check with your BS about stretching exercises. Mine had me start prior to surgery and after the drains came out. It really helped to get the range of motion back. Good luck!
Denny - I decided against reconstruction because I didn't want any more surgery, chances of complications, or recovery time. While healing, I wore a lot of layers to masquerade the flatness. As the sensitivity diminished, I got a set of prosthesis from Nordstroms (insurance covered) and had pockets sewn into bras to hold them. This allowed me to keep most of my wardrobe as much of women's clothing is cut to accomodate breasts. It also helps balance my posture. I wear the prosthesis to work, but they come off once I get home (there's a certain freedom in that). Best wishes for whatever decision you make.
seq24 - I couldn't ring the bell at the end of chemo either. For me, I just felt so overwhelmed with emotion. I ended up bawling my eyes out in the finance office (and that was before they gave me the bill! ;-). Hope your scans come up clean.
Sending you all healing thoughts!
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That's funny on the bell, I couldn't do it either. At that point I was so debilitated from it all I didn't have energy to celebrate or draw attention to myself. Also I knew I had a long way still to go before TCHP SEs would be wearing off for good, plus Herceptin treatments on the horizon going deep into 2017.
All that said, I was quietly very happy/relieved to be done with the TCHP treatment phase.
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Hypatia and Misslil--glad I'm not alone in the bell ringing. I told my husband in the very beginning that I was not going to draw attention to myself at all by ringing it. Then, yes, the emotions were running wild for me yesterday too, not only with the fact that I was done with chemo, but that I now have a new worry. It's like this is all starting over again, so maybe I'm not really done with chemo. I just heard about a woman who went through AC/Taxol, had surgery and then found out her cancer came back in a different form and she had to do 12 more weeks of a different chemo. I can't even imagine, but that is my biggest fear right now.
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Hypatia and Misslil--glad I'm not alone in the bell ringing. I told my husband in the very beginning that I was not going to draw attention to myself at all by ringing it. Then, yes, the emotions were running wild for me yesterday too, not only with the fact that I was done with chemo, but that I now have a new worry. It's like this is all starting over again, so maybe I'm not really done with chemo. I just heard about a woman who went through AC/Taxol, had surgery and then found out her cancer came back in a different form and she had to do 12 more weeks of a different chemo. I can't even imagine, but that is my biggest fear right now.
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Hi ACS!
Hypatia....TY for your post..i was trying to figure out how long I will be out of work...I know recuperation time is different for everyone..just trying to get an estimate...I also don't want to do a lot of surgeries..that also played a role in my decision to do no reconstruction.
I seen my MO yesterday and he and my nurse navigator have referred me to a BS....his office is suppose to call me next week to set up an appt....I fired my first BS..due to him not putting my port in correctly which caused me anguish and pain...I will have a lot of questions for my new BS...I pray he is a good one...but my MO says he's great and he will probably want to do surgery the end of Feb...and he says he is not sure if I need to do radiation..he is going to wait on the pathology report after surgery to determine if I need radiation or not....I hope not..lol
My cancer center doesn't have a bell to ring....I wouldn't have rung it anyway...lol...I was ready to run out of there my last day of chemo..haha
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Seq24 - glad to know that there is someone else out there like me! I counted the days from the beginning until my last day of "ugly" chemo. It's hard to tell people that you are done with chemo, but you are still having to get 1 chemo drug every 3 weeks until the end of August. I don't consider myself "done" until I don't have to drive to the infusion center every 3 weeks (and my ultimate goal of getting the port out because I no longer need it!). I also knew I wasn't through the round, just the infusion... the side effects were still upcoming. Don't let stories about others get you down! There are good and bad stories out there... take the good ones to heart! I hope the SEs are light!
To all the Ladies that are on here I wanted to say Thank You!! You all helped me through one of the worst chapters in my life; having to get from diagnosis through chemo. You helped to keep me sane and I will never forget it!
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Beachbaby--oh yeah, I was counting down every single day, hour and minute of chemo. As of now I am totally done. I do not need herceptin and am scheduled to get the port out on Feb 3. Looking forward to that! I am very worried though that I truly may not be done. I have a new worry. There has been a big change in the breast I had surgery on. There is this long crease like line that has formed. NP looked at it yesterday and is sending me for an immediate ultrasound and mammogram next week. Of course I googled it last night and every photo I saw that looked like mine was a picture of a breast with cancer. I am scared out of my mind!! This is a repeat of when I was diagnosed in July.
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Nayda , I had surgery before chemo, as long as I had the drain tubes (12 days) I was out of commission - no driving. If you get BMX then you are going to have very limited range of motion and activities
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Ohmigosh, Seq, that must be so worrisome after everything you've already been through. I so hope it's just a tethering issue. Please keep us posted.
Lyn
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nayda, I had a home care nurse come check on me and change the dressing. I had help washing my hair (I had hair then ) the first week, then had a shower on my own - I had UMX only so I relied on my healthy right arm . The drains are both painful and uncomfortable - sometimes they leak. You need to be very careful when emptying the drains - clean hands and alcohol swabs. But pain wise I only took Motrin. Had oxy RX but didn't need use. I had burning sensation which pain meds didn't help - it's from nerves dying as a result of MX ..
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seq24: feeling your anxiety here, lady. Praying for positive outcome. Researching on the net is such a good/bad thing. I could never do it before bed or I couldn't sleep.
I didn't even know there was such a thing as ringing the bell until I read about it here. I don't even know if my center has one.
I guess that is a new question to ask. I usually have a private room since I go midday and get a room that a morning person has finished with. I have gotten to know one of the nurses pretty well, though, so I think I'm going to miss talking to her.Hair is making some progress. The sides are looking good, the top is still in the peach fuzz stage. I'm starting to look at hair styles on pinterest, though, and think when I can go without a scarf I might get my hair dyed lavender. Why not? I probably won't ever do that again, so why not now? Anyone going without a scarf or wig yet?
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VLH--thank you for your concern. I will post as soon as I know what's going on. I appreciate your kind words.
NotTheBoss--When are you done with chemo? I was just looking at your DX and treatment. We are very very similar. Everything the same except I had 1 positive node. I would be absolutely thrilled and doing the happy dance that my chemo is done if not for this new huge worry I have. I never thought I would have to have this kind of stress before treatment is even done. Funny thing is my oncologist told me just last week that I was cancer free. So why are they rushing me into a mammogram and ultrasound asap if they weren't thinking exactly the opposite with this weird line/crease thing I have.
My hair is coming back too. Sides are growing faster than the top and back. Sides are dark as my hair is, top is still white/blonde. Probably turning white from all of the stress right now. MO told me that as soon as it is an inch long I can color it with a gentle product. I am saving my $$ in hopes of getting extensions put in by May. As slow as my hair grows it will be 5 years for it to be shoulder length. I'm not waiting that long.
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seq24: I have 5 more Taxol treatments to go. I started at the very end of September on AC, but haven't gotten behind anywhere except for one break week. I asked to skip the rest of those just so I could be done faster. I feel like I'm slogging around behind everyone, though. I don't think my MO will take out my port until after the 6 months after PET scan, or maybe even a year. Uggh. Hopefully your MO is just being extra cautious. Mine is like that. I complained of headaches, so he ordered a head CT. My tumor markers were trending up, so he ordered a PET scan (which insurance denied and I didn't find out about until I was standing at check-in) so then he ordered at CT scan. Hopefully that's what your MO is doing. Since you noticed the line/crease thing it would ease your mind much more to find out for sure that it's nothing, rather than them telling you that they will watch it for now and then test later. I would just assume it's nothing and try to focus on that, and worry other things later. (Easy to say, hard to do, I know...)
My hair is mostly grey to begin with, so it's hard to tell if it is grey like it will end up being, or white like it starts out being. I'm just happy it's making an effort! I've had short hair for years, so at least it doesn't have as far to go to get back to normal...
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I'm so jealous to hear of hair regrowth! I still have nothing happening, but wonder if the Herceptin is interfering.
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seq24, hope it turns out to be just due diligence and nothing to worry over.
I have a little bit of hair trying to grow in, it seems very thinly spaced around so far, and of course very very short no matter how often I look to check if it's grown long lol. Color-wise, it seems to be growing in more brown than it was before but it's hard to say when it's so short/thin. There are white/grey fuzzy pieces as well - some of which have been there all along and are now an inch or so long. Don't see myself able to give up the wig or scarves/hats for some time...
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NotTheBoss--Just a question. You mentioned hair being "white like it starts out being". I've looked all over trying to find information on this and haven't found anything. I remember hearing something a long time ago that the chemo takes the pigment out of the first hair to grow. Is this what you've heard or is there another reason that it starts out white. That's exactly what the top of my head looks like--a bunch of white, fuzzy, sticking straight up hair. I've got the start of looking like a skunk. Dark on the sides, white on the top. Hoping the white stuff goes away. It'll be a very long time until I'm comfortable enough to go without a wig and as I said, I'm looking into extensions as soon as my hair is long enough. I'm not a patient person. I feel like we've all already been through so much with this and it's not fair that we had to lose our hair to start with and I just want to look like myself again as soon as possible.
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seq24: I don't know anything official about hair coming in colorless or white. Just what other people have said. And I'm also experiencing it myself. It's like peach fuzz and very fine. I do notice every few days that it is getting darker looking. I have taken my pic a couple of times to send to my daughter, and when I look back at them I can tell the difference from week to week. If you haven't done that you might want to. It makes me feel good to look back and see that I'm making some progress. There's a post somewhere here (forget the name or which forum ) where a lady posted her photos from week to week for about half the year. It's very encouraging to look at. Especially at the top, which looks like it takes longer to come in, just like mine. I looked around in church today and noticed a guy who just shaved his head and thought, "Ha! My hair is longer than yours!!!"
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The topic is "Pictures of Hair Growth" under the forum...Chemo. Here's a link if it works:
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subject of hair...my hair on top is growing back black baby hair..and on both sides its growing in grey..which is strange:(
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Thanks for sharing the link for the hair growth photos. It just occurred to me that it wasn't that long ago that we were all talking about our hair falling out. And in my case, crying that my hair was falling out. Isn't it great that we are now talking about it growing back?!
It needs to be a faster process though. Too bad it doesn't grow back as fast as it came out. 0 -
I hadn't seen that hair growth thread before, she looks very strong throughout, and interesting to see the progression as it starts to grow in and fill out.
Unfortunately I'm nowhere close even to where her first photo is from June 16th. With a little imagination and luck, hoping to get that much back in another few weeks.
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