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May 2018 Surgery Support Group

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Comments

  • Michi
    Michi Member Posts: 51
    edited June 2018

    SLL

    The fills have been the hardest part for me. Harder than the surgery to be honest. (Pain wise) though I’ll preface that with-I went cold turkey on the pain pills for the filling process other than an occasional Advil. The fill itself is easy, it’s the aftermath of stretching that is awful for me. Also I started at 400 and have had two 60 cc fills. Likely I’m done. Had my second Monday and just feeling some relief today finally after 30 minutes of stretching exercises. The second was much harder than the first, leading me to believe the bigger you go then more you feel them. Correct me if I’m wrong, but aren’t to you planning to go smaller? this may work in your favor pain wise. Also, I started with saline, so I have no idea how having air effects further fills and perhaps that will also work in your favor. Honestly this could just be me, I’ve read several other ladies post who said they had no issues with f

  • SPDGirl
    SPDGirl Member Posts: 98
    edited June 2018

    Happy Friday everyone. Lately, every day seems the same as the day before. Am really anxious to turn a noticable corner.

    I still can't decide how much of my discomfort is extreme tightness and how much is pain, but it is all rolled up into a pretty frustrating scenario. I take ibuprofen pretty regularly and Tylenol occasionally, but don't notice any difference.

    I do feel the occasional phantom pains and sensations, but they are quick. I read elsewhere on the boards that others have been told to look at their bare chests in the mirror each day and it trains the brain to understand that the breasts aren't there anymore and the phantom pains go away 😮

    I do have cold feeling across my chest when I drink something cold, but I have always had that even prior to surgery. I was very small busted and wonder if that is why.

    I've noticed many of you mentioning PT, but I haven't had anyone say boo to me about it. My range of motion seems to get a little better every day, but the tightness has not had significant improvement.

    I'm also super interested in specialized massage therapy for scar tissue, etc, but I haven't been able to find adequate information on who does this and where.

    I have seen a kind of rippling under my skin on my chest at times which looks a bit freaky.

    Marena - I totally get it and many have told me as well that this is a major surgery and all these feelings are normal, but I have a hard time keeping it in perspective.

  • Skiboots42
    Skiboots42 Member Posts: 20
    edited June 2018

    SLL

    I guess I have been really lucky after reading so many having a lot of discomfort with the fills. I have found the fills just a little bit uncomfortable. I also only have one side. I try to do lots of stretching and massage around the expander. I think if you already have air expanding the muscle the saline should not be much different.

    I am really curious to see how everyone does on Tamoxefin. I hope everyone tolerates it ok


  • ReadyAbout
    ReadyAbout Member Posts: 145
    edited June 2018

    WARNING - ANGRY VENT AHEAD: I went to the PS to get my first fill today. He couldn't do the fill because he FORGOT to tell me to take antibiotics beforehand. Even worse, he tried to say that I must have forgotten amidst the "overload" of information I've received lately. (I am super Type A when it comes to details, so no, I did not "forget".) He still refused to prescribe anything for the nerve pain, saying that he didn't know where I got the "myth" that gabapentin is a good medication - he said all it would do is make me high. The crowning glory of the appointment (other than him running an hour late) is that I pointed out 4-5 surgical threads still hanging out of my skin in various places and asked if those have a function in the future. They don't - I guess he just didn't notice them when he was tidying up after surgery. He snipped them off and I hope he was embarrassed by this oversight. I am waiting anxiously for the shipment of marijuana edibles from my cousin in Colorado to see if it helps with the nerve pain. Worst of all, because of this delay with the fills, I don't think I can do the exchange before I have to report back to school in August. He said the exchange would probably involve a lift with fat graft, and to recover I would need to take a week and a half off from school, so I will probably wait until fall break in October or Thanksgiving, so 5-6 months with tissue expanders. UGH! (insert muffled scream here) Sorry for this litany of complaints - maybe I'll post happy ones after the edibles arrive, LOL.

  • SPDGirl
    SPDGirl Member Posts: 98
    edited June 2018

    ReadyAbout- that is awful! I am so sorry. Really! I hate it when people try and tell you that you forgot something and I can't believe he left those threads. That is terrible and then not to be able to get the fill done on top of it all ☹

    Feel free to vent away, I would still be seething!

  • Skiboots42
    Skiboots42 Member Posts: 20
    edited June 2018

    ReadyAbout-


    I am so sorry about your experience!! I am actually waiting until October for my exchange. My PS said that it is actually beneficial to wait a little bit because the implant softens the further out. I am also trying to plan the second surgery with time off. I truly hope things improve for you. Have you discussed your nerve pain with your oncology surgeon or MO? They would also be able to prescribe gabapentin. Some providers are not comfortable prescribing that because it needs to be titration up to therapeutic dose. I am a physician assistant. It can help with nerve pain. Try a different path to get it and try it. There are side effects as there are with everything... sigh

    .

  • Skiboots42
    Skiboots42 Member Posts: 20
    edited June 2018

    ReadyAbout-

    Another suggestion on medical appointments try to get either the first appointment in the morning or right after lunch, the provider is less likely to be late. I also hate waiting. I hope things improve for you!!

  • SPDGirl
    SPDGirl Member Posts: 98
    edited June 2018

    Anyone else hypervigilant about any change in their body post diagnosis/surgery? I didn't use to be this way ☹

    Just started having tingling in my wrist and fingers for the last hour or so - not the side where nodes were removed.

  • Skiboots42
    Skiboots42 Member Posts: 20
    edited June 2018

    SPDgirl-

    Yes... I am hypersensitive to changes. I am sure that will increase with Tamoxefin. The cancer diagnosis is all consuming. I hope it becomes a new normal and forgotten most of the time

  • blessedinthismess
    blessedinthismess Member Posts: 18
    edited June 2018

    I’m with Skiboots. I haven’t started the Tamoxifen, but when they asked if I wanted information about it, I told them no. If I read the side effects, I will most certainly have every one. Also, I pray I don’t turn into a hypochondriac, diagnosing myself with reoccurring cancer every time I feel a new pain or something out of the ordinary. 🙁

  • SLL101984
    SLL101984 Member Posts: 162
    edited June 2018

    blessed-I did the same thing! I asked the dr what side effects should I be concerned with, I will call you for those! I picked up my first bottle 2 days ago and start it Monday. I feel like I should read the papers that came with it but I just can’t bring myself to do it. What I don know cant hurt me right?!

  • FaithsMama
    FaithsMama Member Posts: 74
    edited June 2018

    ReadyAbout: What a nightmare!! I am so sorry! Any chance you can change drs at this point? He sounds incompetent to me. We are here for you. Vent, vent away!!!

    I don't know what I'd do without my muscle relaxers. I am so freakin' tired of the pain, I can't stand it. I too am planning on edibles, or oils. I can't get through the day without my muscle relaxers every 4 hours. When it's super bad, I'll take the oxycodone too, but I don't like the woozy feeling I get with it. I am still going braless, I occasionally wear a bra, or the camisole from the hospital stay wit the drain pockets. I am not sure which is worse, the breast pain, or the itching if I wear a bra. So, I choose the chest pain. 

    I have another complicated issue that I live with, and dealing with breast cancer on top of it, has me very very depressed. Sadly. I am living with(platonically) and have this person working for me. We are very close and yes, we have slept together, just prior to my MSX. Which, of course we both had our reasons, but it complicates things. So, I am feeling sad about the relationship that isn't. Frustrated that my body is holding me back from doing anything about it. It's not like I can go out and start dating at this point when I'm either in pain, or on pain meds and sleeping, or lacking energy or whatever. Then my "friend" healthy as a horse is out and about enjoying his life. I feel left behind. Yet, he shouldn't stop living because of what I'm going through. Anyhow, a  lot of emotions tied up into one complicated scenario. 

    Okay on the bright side: MAY surgeries are over!! We've all had our surgery and are at different stages of recovery. We are mostly all dealing with this pain and pressure at differing degrees. There is camaraderie in that at least, that we all understand what one another is going through physically. There is comfort in that. 

    I should be celebrating, dancing to the light of the moon, that I am not having to do chemo, or radiation, and choosing not to do hormone treatments. So, no side effects for me! I am choosing  to not worry about the cancer, or recurrence. Rather to live one day at a time, and not worry about what I can't control. 

    Sll101984, blessedinth, from what I've heard from some women, side effects are minimal. Mostly sexual dysfunction, if that can be considered minimal. :( And then there's that.....:O)

    Please tell me how all of you are handling getting back into the routine of life? I am still in so much pain, that I lay around the house like a slug. I hate it. But, the meds make me tired, so I don't want to move about, without the meds, the pain makes me crabby and not want to move about. How is everyone doing with daily routines? 


  • kandyhunt
    kandyhunt Member Posts: 46
    edited June 2018

    I am doing pretty good with pain. Or so I think and than suddenly a nerve or something starts screaming. I am getting Lmphedema and it sucks. It seems there are not enough trained massage therapists in the Orlando area so my first appointment is not until July 10th. Crazy. Pain!! who knew. This was one factor I was.not ready for. I have found a friend who learned how to do it for her grandmother years ago. She is coming over once a day to do a treatment. It is working.

    I have had my first fill and it didn't hurt at the moment but I can fill some strange feelings. I just have one drain in amd was to.d as long as I have a drain in I can't go back to work. My .energy level is not that high so maybe that is ok. I am still,sleeping in the recliner. I'm not sure how long that should last. Any ideas?

    My oncotest is in so I have my appointment on Wednsday. Since everyone was surprised by finding cancer in one of my lymph nodes I am thinking the oncologist will want to do chemo. Not thrilled.

    I'm so sorry that some are still in pain. I am 17 days post op and I will not be running any races any time soon. I bought cute pj's and some nice front closure middriff bras that are really helpful for not pulling on the drains. The bra I was sent home in was also too small. I haven't wore since I got home. I have three bras that I switch out every day. I have been able to shower right after my first week. I get tired fast after showering.

    I bought a lot of surgical type pads for dressing my wound. I am very thankful for the pre surgery list of things to have and do before surgery that I learned from this site. It has been a life saver


  • ljm33
    ljm33 Member Posts: 36
    edited June 2018

    Hi ladies,

    I'm so glad I found this. Reading about your experiences has helped. I'm 3 1/2 weeks out from surgery and am up to 260cc in fills. I have nerve pain from time to time but am just generally in a constant state of discomfort. Oh and my back hurts. I was an A-B cup and I feel these huge rocks already. I just want to be a B cup so I shouldn't need too much more which is good because I'm kind of miserable.

    Anyway, I didn't come on here to whine. I'm more interested in what stretches and PT you're all doing. My PS wanted me to wait til my fills are done to start PT and I haven't gotten any stretches to do. I've been told by others how important the stretches are but my PS says as long as I'm in pain, she wouldn't recommend it. Right now I can't come even close to lifting my arms above my head. I can barely go straight out (like you'd do for arm circles) and I'm worried I'm setting myself up for trouble. Any insight would be appreciated.

  • SPDGirl
    SPDGirl Member Posts: 98
    edited June 2018

    FaithsMama - I am sorry for the relationship/emotional complications on top of everything else. Everyday reminds me that "recovery" is SO much different than I was expecting both physically and mentally. My daily routine is ridiculous. I am still not driving and really don't have any desire to be out of the house (although I am an introvert to begin with). I spend a lot of time in my recliner each day trying to do bits and pieces of paperwork or computer work that needs done, but the bits and pieces barely add up to anything. I keep waiting for the discomfort to subside and allow me to "be me" ☹

    Kandyhunt - I am almost 5 weeks post BMX and still in the recliner. Nothing else is working for me currently.

    Ljm33 - I did not have any reconstruction following BMX and my BS did not give me any stretching exercises. She told me at 3 weeks that I could start some simple ones. If you look back in this post, ReadyAbout posted a good link for some. The link is specifically for those w/o reconstruction, but the website has other videos for other scenarios

    The last 24 hours has been so different for me. Lots of unfamiliar little twitches, zaps, catches in my chest and continued tingling in my wrist and hand on my non node removal side. It has been concerning me some. I know my neck and back aren't happy with the last few weeks, but I am not entirely sure if that is the problem or not.

    Praying you all have a restful night!

  • blessedinthismess
    blessedinthismess Member Posts: 18
    edited June 2018

    ReadyAbout: I agree with FaithsMama. Vent away! I don't think I would darken the doorway of that office again. He "forgot"??! It's easy for me to say, but I hope you find another PS. I think it is so easy for them to dismiss our pain because there is NO WAY on earth anyone can imagine what we are feeling unless they've been through it. I researched and read everything I could before surgery, but NOTHING prepared me for all of this. I can't begin to imagine your frustration. I do understand the frustration of missing work after being off all summer. I ran out of days for the first surgery and I'm thankful to have summer break to recover, but my exchange won't happen before we go back in August either, so I'll have to take time off again. I wish I could plan it around a long weekend or something, but I have no intention of keeping these stupid expanders in any longer than necessary. I definitely don't want to wait until Thanksgiving. They say the recovery for the exchange is much easier. I pray it's quicker too. I hope things turn around for you soon.

    FaithsMama: I'm sorry you are so miserable. I can't imagine dealing with so much pain, AND what you're going through with your friend. I've been with my husband for 30 years, so I've forgotten how to date. I'm also probably much older than you, and I can't even imagine being back into the dating scene. However, I do know about depression and how easily it can take over your life. My faith keeps the depression at bay. Otherwise, I would be a total psycho right now. Thanks for telling me about the grand side effect of Tamoxifen. Sexual dysfunction? Just shoot me now. Ironically enough, I've been thinking about sex a lot lately. (Did I just type that?😳) I'm afraid to do anything, and today I was feeling sorry for my husband, because my breasts are dead. How much pleasure could he get from caressing these rocks? He says it doesn't matter, but it bothers me. I won't dwell on it, but today it had me thinking. Sorry for the TMI. There's probably another group for that talk. 😉 As far as getting back into a routine, I'm slowly able to do more and the pain of Tuesday's fill is gone, but I go back this Tuesday, so that relief will be short lived I guess. I am taking baby steps. I took my 4 year old for a walk today and played more than I have been able to in weeks. Not being able to clean my house is killing me. How I long to be able to sweep and mop my floors, run the vacuum cleaner, and be able to reach my microwave without wearing wedges. My son's room is a nightmare. I can't even go in there. 😱 Yesterday I paced the floor agonizing over it all. Fortunately, I don't have to go back to work until August, so my routine this time of year is much more relaxed anyway.

    kandyhunt: I will be 6 weeks post op on Tuesday, and I am still in the recliner. I tried to nap in the bed with mounds of pillows, and it lasted less than 10 minutes. I am a fetal position/side sleeper, so the recliner sucks big time. However, I couldn't get comfortable in bed at all. I laid there and obsessed about how badly I wanted to lay on my side, so I got mad and gave up. I've had permanent stiff neck because of the recliner, but it is beginning to get a little better. How I wish I could go to a chiropractor and get my body realigned. My body hates me right now. As for the bras, I've spent more on bras since I had surgery than I have in 5 years. Can't wear most of them now, because of the fills. I bought a DD sports bra from Target last week because I'm sick of having to buy new ones. I have room to grow, and when I wear it, the girls look amazing! 🤣 I don't even look like I've had a mastectomy when I wear it. I keep thinking about the silver lining and not having to wear bras anymore after I get the implants. That's when I'll REALLY be excited about not having nipples! My daughter is excited that she will inherit all of these great bras I've had to buy.

    ljm33: I am still restricted and haven't started PT. I'm anxious to begin because I hate how little my range of motion is. I'm not even supposed to put my arms straight out to the side. I just did it to see how well I could and it is discouraging. I am going to ask about it again on Tuesday. Maybe he will get tired of me asking and finally release me to do PT. He assures me that it will all come back and that the most important thing right now is keeping these cinderblocks in place.

    I'll just keep apologizing for the lengthy babble, because more than likely, all of my replies will be much too long. Instead of sleeping like I should be right now, I would rather catch up and hear how all of you are doing. Sending you virtual hugs and praying that each day will be better for you than the day before. 🙏🏼

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited June 2018

    kandyhunt, I am 7 weeks post BMX and still sleeping in a recliner. My PS says I can start sleeping on my sides 2 months after the surgery. Regarding stiff neck, try sleeping on the neck pillow you use for travel. I find it very comfortable. About your lymph node, I am in the same boat as you. One node of 18 came back positive. Everybody was surprised, since cancer didn't show in any of the imaging studies done before surgery. My BS didn't even think Oncotype test was necessary. She said if it's already in one node, it will definitely spread without chemo, no matter what the score is. I am now done with 2 of 4 AC sessions, and then will have 4 Taxols on top of that. It's not fun, but it's bearable, and totally worth the peace of mind, if people like me can have it.

    FaithMama, you've got a complicated life, girl! Sorry you have to deal with personal problems on top of health issues.

    ReadyAbout, why would you need to take antibiotics before the fills? I was never told to take them.Your surgeon sounds like an inconsiderate bully, so sorry about it!

  • DTR808
    DTR808 Member Posts: 21
    edited June 2018

    kandyhunt - Saw your post above about having one positive lymph node. I, too, had one positive node and just to let you know my experience, I had both a low OncotypeDX score (16) and a really low Mammaprint result. With that, I sought out second opinion from a MO as my first MO originally didn’t think the tests were necessary in my case (my orig MO did eventually order tests because I pushed so strongly). Long story short, after my test results came back, my orig MO ended suggesting no chemo (although said I could do TCx4 if I wanted) and my second opinion MO suggested chemo (same, TC), but was also ok to forego chemo and just get on hormonal therapy. Obviously two semi-conflicting suggestions but I guess nice to know I have an option?

    So I guess my point is that just because you had one positive node, doesn’t necessarily mean you need chemo or that it would be beneficial. I’ve ran into others on the boards here who didn’t go through chemo with 1+ LN.

    As for what I’m going to do. Still waiting. My coworker’s cousin used to work with and is neighbors with Laura Van’t Veer, creator of Mammaprint. She’s a world renowned molecular biologist and head of the breast oncology program at UCSF. I’ve forwarded my path and both test results along and am awaiting her opinion. I obviously will weigh her opinion more heavily than my first two opinions.

    Hope your OncoDX comes back super low

  • ljm33
    ljm33 Member Posts: 36
    edited June 2018

    Thank you for the advice regarding PT. Blessedinthismess, your PS sounds like mine. She keeps telling me that she doesn't want the expanders to move around and I'll have plenty of time to get at it. I'm still in a bit of pain and discomfort as it is and she seems to think waiting will spare me more pain and let the scar tissue heal. I just keep reading so much conflicting advice that I never really know.

    As I said before, reading through everyone's experiences has helped a lot. At 3 1/2 weeks post-op I'm still sleeping propped up on about 6 pillows. It works but it's not ideal. Pillows under the arms and the neck pillow have helped as well. Here's to healing quickly and that each day gets a little better for each of you.

  • SLL101984
    SLL101984 Member Posts: 162
    edited June 2018

    Day 1 of 3650 is tomorrow...first dose of tamoxifen waiting for when I get up. Trying not to stress too much about any issues I may have taking it, hoping the fact I’m healthy other than this little issue will help keep major side effects at bay. Also trying to focus on this next step in baby steps, 10 years is overwhelming and s long time. To everyone else just starting the next step in this journey, I wish you lucky and success, with no side effects or complications.

    Those still struggling with pain, and discomfort issues from surgery, I hope you find some relief assp

  • FaithsMama
    FaithsMama Member Posts: 74
    edited June 2018

    Blessingsinthe: Do NOT apologize for the lengthy babble!! It's what, I and I think, we all, look forward to!  Reading others experiences and thoughts help us deal with our own. I am with ya on the thinking about sex a lot. I haven't post this, well, just because, I suppose. But, I found my sex drive was REALLY high after surgery and even now. Not as high as directly after surgery. What is THAT about?? It must be something to do with hormones that are in the tissue that's removed. Maybe our bodies just kick it up good to make up for what was taken away?  

    6 weeks out and still in the recliner. Oh my you poor thing!!! I really feel terrible for complaining now.  I am in my bed and WILL sleep on my side. It's painful, but I do it anyhow because the pain my neck is worse if I don't. 

    Ijm33, it's sounds like you are doing well for being 3 weeks out! Good for you!  My PS didn't want me to start PT until about 3 weeks out. I am 4 weeks out now and will be calling for PT Monday. My BS just told me to reach up, out, down and practice picking small items up from the ground. She is very helpful. Sorry to say. 


    SPDGirl: Thank you for sharing your story. Hearing how you are dealing with your recovery helps me to feel "normal." I am driving, though I shouldn't be!! I drive on my muscle relaxers. I don't feel it affects my ability to drive. But, if were pulled over, it would be not so good I am sure. I have gone back to work, as I feel able. I own my own business, so I can set my own hours and job duties. However, my job is very physical. So, I do what a can, as I am able. I do spend days on the couch or in bed, working on paper work, and sleeping a lot. Glad to know I am not the only one. :D

    Kandyhut, it sounds like you are taking it all in stride and recovery nicely. I am glad to hear that!! Keep it up!! I am sorry about the positive node. I think you will find many stories on this site of women who chose NOT to do chemo, even with positive nodes found. Keep us updating. I hope your oncotype appt goes well and they say you DON'T need chemo. 

    ReadyAbout: Thinking of you. I hope things start turning around for you. 

    DTR808: That sounds great to have such a special contact!! Please keep up up to date on how it goes and what she advises.


    Thank you, EVERYONE for sharing your stories and daily routines. It has helped me immensely!! I feel really terrible for complaining now. I am able to drive. I went on another hike today, with my friend, "DJ" I'll call him. ;D I was in gobs of pain, but had enough pain relief to enjoy being outdoors in the wilderness and the feeling of participating in life again. Undecided if I will go into work tomorrow. But, happy I am feeling well enough to have the choice. Healing and strength to all of you!!


  • DTR808
    DTR808 Member Posts: 21
    edited June 2018

    Just thought I’d share since I saw blessedinthismess’ bra comment and it made me think of this.

    I love the Uniqlo wireless bras. Inexpensive and super comfy. As I’m sure most here can relate, I was having “shape” issues several weeks post surgery as I’ve been in the process of filling my expanders and I got this super comfortable one which had light removable padding which evened out the oddities of my misshapen foobs (that also didn’t irritate or rub against my incision from my Lymph node removal):

    https://www.uniqlo.com/us/en/women/limited-time-offers/innerwear?quickView=404117

    Almost done with fills (just one more to go), so the shapes have evened out a lot, but this was a godsend to me in the early days post-surgery. The only issue is that range of motion might be an issue as you have to pull it over (no zip). I actually sized up (usually a M, but got a L) and was able to pull it on from the bottom up (and pull off from the top down).

    Now that things are back to normal and my range of motion is 80-90%, I am using the other Uniqlo wireless bras. Super, super comfy and so glad to not be paying $$$$ for bras from Nordstroms or a specialty store for temporary use!

    Just thought I’d pass this info along as these bras played an integral part of me feeling better and less self-conscious about my foobs. Hey, anything that makes these rocks in our chests feel more comfortable, right??? ;

  • SPDGirl
    SPDGirl Member Posts: 98
    edited June 2018

    Tomorrow is first appt with MO and I have a list of questions a mile long!

    SLL - how did Day 1 of Tamoxifen go?

  • SLL101984
    SLL101984 Member Posts: 162
    edited June 2018

    SPDGirl- so far so good, no immediate side effects like nausea. We’ll see how things go as it builds up in my system. I was tired this afternoon and napped when my daughter did! Not sure if it’s related but if it is I’llhave to switch to taking it later in the day.

  • sn75
    sn75 Member Posts: 31
    edited June 2018

    anyone dealing with skin that feels sunburned and is irritated even by the touch of clothing? I also have lots of itching especially as the day goes on. It's driving me crazy! Anyone found something that alleviates it?

    My drains were pulled last Thursday and I still have some oozing. Is this normal to go this many days? It's not a lot, and it's a yellow color but it is a bit annoying.

    I went to work for four hours today and did well. It was good to have a purpose and get something done

  • kandyhunt
    kandyhunt Member Posts: 46
    edited June 2018

    My oncologist appointment is not until Wednesday but my oncologist called me earlier today to inform me that my Oncotype score was in and he wanted me to know what it was since I had waited so long. He told me my score was zero. ZERO!! This is so amazing. I am still meeting him on Wednesday but we will be discussing using Tamoxifen instead of chemo. My BS pulled some strings to get me in to see the lymphedema specialist on Thursday. I still have one drain left. Hopefully it will Come out on Wednesday. I am hoping that once it is out I can use my bed.

    I so enjoy reading everyone's comments on their own recovery. Wishing everyone the best. I am still in some pain but it is getting better

  • Skiboots42
    Skiboots42 Member Posts: 20
    edited June 2018

    sn75- I would call and ask about the drain wound still draining. I have no idea if that is normal, but seems a long time. Are you still on antibiotics? Was your output under 30 mls before they were pulled? Mine closed up after about 48 hours, however I did have my drain in for over 24 days... horrible.

    I am on day 4 of Tamoxefin with no noticeable side effects. Hope is continues. I am taking it at night with dinner. When are others taking it and why?

    It sounds like peak plasma level is about 5 hours after taking it, so I think I would rather be sleeping. However steady state takes about 4 weeks and its metabolite about 8 weeks. So it will be between 1-2 months to know how we all really respond to it. What have others heard or read

  • sn75
    sn75 Member Posts: 31
    edited June 2018

    skiboots42 - I'm not on antibiotics anymore. The right one has been almost nothing today. That drain was under 25 when pulled. The left has always been more. It was at 35 when he pulled it so maybe that is why. I'm also left handed so wonder if more activity on that side aggravates it.

  • jannellg
    jannellg Member Posts: 1
    edited June 2018

    Just found this thread.

    I had my RB Mx on 5/24/18. Had LB Mx in 2012. This time seems harder for some reason. Re: Gabapentin. I am taking it along with perocet. I was not prescribed Gab in 2012. I can tell a big difference in my comfort level, especially for night time.

    Uh...and it doesn’t make you “high”. If you look it up, it’s indicated for sleep. Not sure how “high” you are while you’re sleeping. And it is indicated for nerve pain...soooo...not sure the problem with your Dr

  • blessedinthismess
    blessedinthismess Member Posts: 18
    edited June 2018

    kandyhunt: Yay! So glad to hear your Oncotype score was zero!! Seriously just made my whole day.

    Very happy to read about the ladies doing well with the Tamoxifen! I will be seeing my oncologist again July 2nd and she will be giving me a prescription then. I swear I'm not going to read anything about it, except what I see here. I'm encouraged just to read that it isn't as bad as I thought it might be.

    Tomorrow is my weekly fill and I am trying not to be anxious. It wasn't bad last week as far as the needle, but the pain and pressure was pretty intense for a few days. I feel like things are getting back to normal for me. I find myself forgetting about these bricks in my chest a lot, so I think I am also probably doing things my PS wouldn't approve of. I consider it progress when I don't constantly think about the discomfort.

    Yesterday I took the bra off and wore a tank top for a bit. I haven't been able to do that since I was a teenager. I also discovered how quickly the saline in my chest changes temperatures. Good grief! It is in the 90s here and yesterday I went to a cookout. A storm rolled in and we had horrible wind and I even got cold from the rain blowing in on me. Every part of my body was cool, but my foobs were HOT! It's freaky, and I'm glad I decided not to go with saline implants. I can't imagine how COLD they would get in the winter!

    I can't remember who mentioned the skin sensitivity, but I have it. I have places that feel like something is rubbing the skin raw, but it isn't even red. The skin under my expanders feels raw ALL the time. I keep slathering the Bio oil on, but I know it is the band on the bras I wear all the time. I'm so sick of wearing them.

    Looking forward to getting out with my toddler this week. Nothing gets you back in the swing of things like a needy toddler. I love him more than my luggage, but he sure makes me feel every single one of my 48 years. Since I was able to go out alone with him and buckle him in his car seat, I'm anxious to get back to our mommy/son adventures. My older son turns 17 next weekend. When did I get so old??!!

    Hoping you all have a restful night or blessed day! (depending on when you read this) We are all one more day closer to the end of this madness! God bless! 🙏🏼