Mastectomy Sept 2011
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Olgah- it wasn't too bad with the neulesta shot. I did get body pain. It was more " very uncomfortable" for 2 days rather then painful. Tylenol took care of it so I didn't use Claritin this time. Does it get worse each time you get the needle? My next one will be next week after treatment 2. How have you been?
Sarah - the statement from your PT makes alot of sense. Sometimes we need someone to remind us to take it easy for once. Even going though chemo now I still think I can do it all, but we have to listen to our bodies and give them time to heal.
Hope everyone's having a good week!!!!!!!!0 -
Tina -- I had my first fill yesterday. He put in 60cc. PS prescribed muscle relaxers and I did take one yesterday afternoon and one in the middle of the night. The TE are really tight and a bit achy. He put in 90cc durning surgery so I am up to 150 cc.
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Margie -
Muscle relaxers probably would have helped me - I feel sore and swollen. I saw PT yesterday and it just made things more sore - but I am hoping this will get better quickly and maybe future ones won't be so bad????
I think it just became more real to me that I have a ways to go in the process and that discouraged me - being swollen and sore after just getting some ROM and strength back. One step forward one step back... and lots more steps to go before I get the permanent ones put in.
Rainy grey weather doesn't help improve my mood.
But I know I can always come here for encouragement and to read about how my sisters are doing.
I am so thankful for that!!
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Tina. I will tell you for me dealing with the pain/discomfort of the TE has been the worst part of my BC journey so far and I did 4 months of Chemo before I had surgery. My PS told me yesterday if I can handle the week fills we will be on track for a Jan exchange surgery.
Tina i hope your day gets better.0 -
Margie - Thank you - I am sure I will adjust... when did you start your fills? my right side just looks a wreck - all swollen on the side and squished in the front.
I am hoping to do my exchange this year because I have met my out of pocket max so I wouldn't have to pay anything - if it goes to January we start all over again
But at this rate I am not optimistic that I will be ready before the end of the year.Sorry to be a downer this week ladies - I know I will come back up again!
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Hi, everyone!
My computer did not work for couple of days, and it is not virus...Just came back from my oncologist, labs for chemo number 3 on Halloweeen day... Still anemia and low WBC, even with Neulasta! It is better then first time, but not normal. Put me on Iron, Ihope it will be enough.
Sorry, Diana, I forgot to ask about second Neulasta shot, but I assume it will be the same. I dread remembering all the diziness I had, but he told me this time to take Claritin only 48h.
My left so- called breast still red and they have no idea what is it.
Margie, I am so sorry you had to go through it. I feel pain afterwards too and after drivind or doing something like washing or reaching smth. I usually take Aleve. And Ativan helps too, I hope I won't get addicted.
I already gained 4 pounds on chemo.Not good.They say usually it is about 7. It is why we had not to eat much, but it is difficult.
I hope the redness finally goes away and I will have my exchange next year...
Happy for everyone's good news!
Olga
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Tina - yesterday was my first fill. I wanted my exhachange end of Dec but we are looking more likely at Jan. Like you I have meet my deductible and out of pocket max for this year, but I will next year too - I am HER2 + which means I have a year of Herceptin via IV which will go on through May 2012 - these IV are expensive.
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Hi everyone, new to the forum - just found you. I had a right mastectomy Sept 1st after an Aug 5th diagnosis. I am waiting till radiation and chemo is over to do reconstruction. I've gone through two of 6 rounds of chemo so far... tatotere/cytoxan. So far, so good.
I have had lymphatic fluid swelling (I guess its called a seroma). It had gotten nearly as big as a normal breast (mine are kinda smallish) until they drained it just yesterday. Anyone else have any experience with seromas? How common are they? Do they come back? Mine wasn't painful or anything. I just thought I needed to have it checked and the dr said it should be drained. He removed 360cc of fluid. The experience was strange to say the least - no pain at all and no numbing meds... wow.
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Hi everyone - I've been absent for a day or two, so I'm behind on everyone's posts - hope everyone is doing well.
I'm doing well - went back to work yesterday (it's part-time, teaching 2 days/wk). It went just fine, but I was pretty wiped out last night. I had today off and took it easy (no exercise except some gentle shoulder motion), but I did go visit a friend this afternoon. That was great for the spirit of course! Tired again tonight - need to rest up for tomorrow. Will be working 1/2 day in the morning and then I have my doctor appt in the afternoon to officially review my 2nd opinion path report and find out their recommendations. DH will be able to come with me - so happy for that!
Welcome Julie! A few people here have had seromas - hopefully they'll chime in!
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Hi, Julie!
How often are you having chemo? I had BMX September 1 as well with reconstruction and had only
2 tx, the next one will be on Monday. I have tx every 3 weeks. I am having taxotere, carboplatin and herceptin.SE includes fatique and anemia, low wbc, so that I am getting Neulasta.Do you have any SE?
Unfortunally, I don't know anything about seroma, but I hope you will feel better.
Olga
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Hi Olga. I'm getting chemo once every three weeks for six rounds. I started Sept 29th and then also had another on Oct 20th. My next one will be Nov 10th. My Onc and I discussed neulasta and it's benefits and side effects and we elected to start without it and see how I did. My WBC/Neutrophils dropped to pretty close to nothing on day 10, but then recovered very strong by the next chemo. They said since I did so well that we'll go again without it. I have two gradeschool kids and now have become a hand washing clean freak. I can't eat raw fruits or veggies on days 7-16 and I have hand sanitizer stashed everywhere. My red blood cells and platelets never didn't have any significant drop so I never experienced any fatiuge other than from the anti-nausea meds. The side effects of the chemo, so far have been very tolerable. No nausea at all. Mouth is very sore for the first week. My nose got sore after that the first time, but it doesn't seem to be happening this time (all the nose hair already fell out). Then I had severe bone pain (bones re-generating WBC) and then all of my darker shaded hair fell out. This time I also have had continual itchy scalp. (if anyone else out there has itchy scalp how are you controlling the itch?).
So, today is day 7 after treatment 2 and I sit here with very thin, light blonde hair and a super itchy scalp and a mouth that feels like sandpaper.
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Julie,
get Biotene in drugstore , it helps with mouth sore and rinse your mouth very often.I read about itchy scalp, they wash it with something, I need to look, I forgot.I started september 19 and my hair started falling off on 18 day, so I just cut it short myself with scizzors and felt much better afterwards,later I shaved it , slowly with Bliss shaver.I am wearing silk scarf now, I got it in Cancer Center for free.I also got myself a wig, but I don't like it.Neulasta actually did not give me any special pain, I just had reaction to Claritin, which they prescribe with it-I was weak and dizzy. I also try not to go anywhere so I would not catch cold.
They say every chemo is different..I will see next week..Go to look for itchy scalp remedy...
olga
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Hi Julie - welcome! I have no experience w/seromas - glad yours wasn't horrendous . . . I've had enormous blisters (from spider bites) drained and it was much as you described - didn't hurt, and actually I felt enormous relief afterwards b/c the skin had been stretched so tight and the was relaxed. Do you need to worry about infection or is the area pretty much closed? How old are your children? I have an 8-year-old daughter. Glad chemo's going OK for you - I found it to be unpleasant, but tolerable - never got the mouth sores and I became a germaphobe (got it over the winter months too)! I'm still a hard-core handwasher - I had never realized how many germs were tranmitted from hand to mouth/eyes/nose!
Lorraine - how is working going for you? I hope your energy is up - are you teaching PT? I'm very anxious to hear how today went with reviewing the path . . . glad your DH could be there - that is a huge comfort, at least.
I'm doing OK over here - new, weird sensations close to my chest wall that I think might be Alloderm-related (this is the point where my own tissue might be meshing w/the Alloderm I guess). Nothing too bad at all. Did I tell you guys I've been banned from walking very much? I was causing too much swelling so PT has been very strict w/me. I love her and am now going to see her 2x/week b/c I felt like a new woman after Monday's appt. Seeing her tomorrow. I now have enough energy to read voraciously and so have polished off 3 books in the last week and 1/2 - took myself to the library today (first solo outing!) to pick up a new one on hold. At least I can read w/o guilt if I can't do much else, right?
Hope everyone else is hanging in there . . . .
Sarah
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Oh - itchy scalp remedies - two thoughts - one, for me, when I still had a little bit of hair, it was VERY itchy - I used duct tape to pull out the little bits - like you'd take lint off a sweater. Worked great. Then for dry, itchy scalp, Aquaphor was my friend - would lube up the scalp w/that and put on a designated soft, fleecy hat and let it soak in . . . ahhhhhh. Chemo during the dry fall/winter months can be tough on your delicate scalp! Good luck, chemo ladies - hugs to you all.
Sarah
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Sarah - My kids are 9 and 11. One has already had two colds and a sore throat this school year (while I've been on chemo) and the other had just a cold. I've nagged them a lot about hand washing and coughing etc etc to the point that I heard my son say "I know, I know, if I get mommy sick she could die"...
then I felt horrible. I've lightened up a bit, but I still remind them a lot.Olga - I have the biotene and use it regularly. It's the best. I've also started sucking on hard candies a lot. So long as they're in your mouth it's ok, but once they're gone then theres no relief. Not sure if the added sugar is something I want to be doing too much of, but it does work in a pinch.
My seroma never really bothered me at all. I just didn't know if there were long term issues with having it or what. They drained it on Tuesday and it's already starting to come back a bit. Not nearly as fast as it came on after the drains were removed, so maybe it'll be less this time.
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FYI I learned at my look good feel better class that when you scalp itches due to your wig to apply corn starch lightly to your scalp before putting you wig on.
Lorraine - hope you first 1/2days back to work go well.
Sarah -sorry about no walking, but best to listen to the PT.
As for me my TE have settled down after the fill Tues. They only bothered me for 24 hours after the fill. Next week I will take a muscle relaxer before going to the PS. I have noticed that my chest is much tighter when doing my PT. I'm still sleeping in the recliner - laying flat makes my TE ache (PS said it could be like this the whole time i have the TE). I think I will be shopping for a wedge pillow this weekend or doing the folded up comforter trick someone suggested.
Have a good evening. I am off for my night walk with a girlfriend.0 -
Julie, isn't it a baking soda for itching scalp or I lost my mind with chemo head? I think it was it, but I need to find the answer!
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Julie - Glad your chemo SEs are fairly mild. Hope it stays that way! I did chemo first and was SO GLAD to tick that off my "to do" list!
All - I really appreciate the conversation about who sought out PT on their own and who was encouraged by a doc. I hadn't really thought about it since I was signed up for at home Occupational Therapy before being discharged from the hospital. I KNOW the ps didn't prescribe it. I'm now wondering if the bs did it. Since my insurance requires referrals, I'm going to check with my primary doc to find out who prescribed. And now that it's on my radar, I'm going to loudly proclaim how valuable I found the therapy. It's been awesome (my last session was on Monday) and my ROM is excellent.
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Sarah - yes, I'm teaching in a physical therapy assistant program - I'm just assisting in the lab part right now, but they want me to do some guest lectures in the future, too. They wanted me to do that this fall, but when I learned of my BC diagnosis, that put everything on hold! They have been incredibly supportive and understanding. So, any time I need to leave for doc appts, etc, they have no problem with that. My energy level during class has been just fine so far! I feel fine when I get home, but then a few hours later I'm wiped out and guess what...sleeping well, LOL!!!
Oh and Sarah about being banned from walking too much, but I totally get that. I've backed off a bit and am being even more careful. My motion is pretty good...so I'm not going to push it!
Margie - glad the TE's have settled down!
Silia - soooooooo glad the therapy has been beneficial!!!
Well, here's the scoop on my follow-up appt to discuss the 2nd opinion path today. I found out some new things...
On the R side (supposed prophylactic that turned out actually had DCIS) - margin is < 2 mm. They CANNOT do re-excision (I thought they could) - b/c they can't reasonably figure out where the DCIS is based up the slides - it could be 1 cm off, and then they'd end up re-excising the wrong area...so radiation is recommended instead.
On the L, DCIS is right up behind the aerola, so I will have re-excision for that. DCIS is also < 2 mm from posterior margin - need radiation for that despite the fascia being removed. In their opinion and based on the latest research, this is what is safest to prevent recurrence.
My doctors explained to me that radiation after MX for DCIS is rare but when needed it tends to be in cases like mine: small chested, very little fat so the breast tissue is close to the skin/muscle, and a large amount of cancer throughout the breast.
The center I go to is one of the 40 centers certified by the NCI. So I really trust them.
So - summary...will be getting re-excision of areola on the L and bilateral radiation s/p bilat MX. Ugggh...!
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Margie - Glad the TEs have settled down for you - I think I am in for a bad road with these suckers. I am still sore and swollen on the right side. I am pretty uncomfortable. I am back on advil a few times a day to manage it. Had PT today and she is working on the swelling but I am thinking this is just taking a long time. She still feels good about how everything looks.
I have been trying to sleep in the bed -but tonight retreated back to my recliner after tossing for an hour... now I am in the chair and also miserable.
There just is no comfortable spot for me tonight.
Praying for peaceful rest for all my friends tonight.Tina
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Lorraine - : ( to the need for reexcision and rads. It would've been so great if you didn't have to worry about the leftovers. I'm sorry about it - looking at the "bright" side, I guess it's nice it's not chemo + rads . . . ? From what you're describing, I'm sure my folks would do the very same thing - although you definitely don't want to do more surgery/treatment, you most definitely don't want any little cancer buggers in there, waiting to fire themselves up over time. Hugs.
Tina - back to Mr. Recliner, huh? Crap. Have you discussed the lack o' comfort w/PT? Just wondering if she might have some other suggestions for ways to make yourself more comfortable - but maybe it's just that your body is still so out of sorts that there is no good way for now . . . although I am lying down in bed, I still am only on my back, super tight and uncomfortable by a.m. (my SNB incision on the R kills me when I sit up after hours of lying down, for example). I think part of it is that we are still only 5 weeks out from being pretty messed around with. You feel like you should be all set, but it was major trauma to your body. Hang in there. Hopefully you can nap today?? More hugs for you!
I stayed up late last night - just not tired. Watched "The Education of Dee Dee Ricks" on HBO - a documentary about a zillionaire hedge-fund woman in NYC who is dx'd w/BC and has a BMX and is struck by how hard it is for uninsured women - she begins to devote herself to advocating and fundraising for these women and supports a clinic in Harlem where uninsured women can go to get free/reduced fee care. Pretty good - they didn't focus a ton on Dee Dee's treatments (immediate recon, chemo), but they did a good job w/what they did. I got sucked up - it wasn't depressing and will be re-airing a few times in the next few days if you want to catch it.
Today I'm off to PT, then DH will be home from business travel and my MIL will leave - I am officially to the point where I'd rather NOT have help here. Still need my daughter to open the fridge, etc. for me, but we can do dinner ourselves and although I'm so grateful for the support, my MIL is becoming superfluous - hooray!
Hope you gals got some rest last night and that today is a good day.
Sarah
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Sarah - Yay for more PT _ I know today will be a good day for you - DH home - MIL leaving... This is a good day for you.
I was up most of the night - took another ativan around 2 - dog was unsettled barking at something - and now just woke me up to throw up on the floor.. poor bud. So there was no sleep for me last night. I did ask PT about the sleeping and she said - whatever works - if it's the chair - use it - I need sleep. She said 6 weeks should be a good turning point - how will i feel if it's not!!! Oh well. Each day is a new day.
I hope everyone here has a great one!
Tina
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It snowed last night! So lovely to wake up with snow covering the ground
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Tina - is 6 weeks a turning point? I hope so!! I'm sure there are milestones like that they can generalize to, but I'm skeptical, too, since we all know how different we all are . . . but I'm going to keep fingers crossed that you'll cross some comfort threshold in the next few days and you'll be able to get some good quality REST!
Groovygirls - we had snow here, but it didn't stick . . . not sure how I feel about it this year - feeling a little like Rip Van Winkle - like I just woke up in the last week and all of a sudden winter is coming up on us. Missed all the usual autumn activities and autumn is one of my favorite seasons. Ah well, next year'll be my year.
My MIL has left the building - hooray! I'm alone 'til 11 when my ride to PT comes (it's about 35-40 min. away w/traffic, just not sure I should do that yet). Then a little while 'til DH returns home from Miami/SC - he will be shocked at how cold it is up here now! Question of the day is . . . am I just going to go for it w/my winter coat (long + quilted down coat) or use the interim one??
Sarah
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Tina -- I shouldn't have spoke about my TE - last night all night the right one hurt like hell. I was so proud yesterday because I was drug free all day. This morning I had DH look at them closely and the right is a bit swollen and I had to take a pain pill UGH. The only thing I can think off is my BF and I did our 3 mile walk at our old fast paced. I hope you can snuggle up today and take a nice long nap
LorIne-sorry for having to have the re-excision and rads. It sucks when you think you are done with this stuff and you get that call. Sounds like you have a fantastic place to work.
Today I am going with a girlfriend for a peticure -- I can not wait I haven't had one since before I was diagnosised late April.
Sending gentle hugs to everyone.
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Happy Friday all.
Where to start? Miss a day and have lots to catch up on....
Tina - I hope you turn the corner to comfort soon. I am sleeping on my back now but the TE's are just uncomfortable regardless where I am. Hate these suckers....
Groovygirls - Congrats on the snow. Hope to see a few flakes here tomorrow.
Sarah - I am with you as fall is my favorite season too. Keep up the good work with PT and you'll be back to fighter status in no time.
Dancetrancer - CRAP! So sorry you have to have the revision but better to do it than risk any of the cancer buggers escaping.... HUGS...
Margie - Definitely get some pillows. I joke I could puncture a lung with the TE if I lay right without the pillows...
Silia - Glad you did so well with therapy.... Clearly helps so hopefully it will become more of a standard in the future..
Julie & Olgah - Hang in there with the chemo. You are warriors!
Busy day Wednesday in my world. Saw PS and again no fill.... Incisions are healing and looking good so we should be able to start next week... PS says I don't need much more beyond the surgical fil so I am still set for my exchange to squishees.... Really don't want any delay as I hate the TE's... Brick hard and just don't think I am ever going to get comfy with these things. I am making do but don't have to like them, right?
Anywho, hope everyone has a great day.....
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Thanks everyone for the words of encouragement...I'm so bummed. I know it's what I need to do, but really freaked by the radiation in particular. I know most women do well with it...just so frustrated with this bump in the road. I feel so sore still, my skin still so sensitive...sad that I have to expose my body to more trauma.
I know my mind will come to accept this eventually. Cancer SUCKS! Tina and Margie - so sorry you are still sore with the TE's...such a long road for all of us!
Sarah - so glad you are feeling more self-sufficient...woo-hoo!
Odie - we don't have to like any of this crap! LOL Glad to hear you are healing well.
Oh and re: the 6 wk thing - it may just be a general guideline, since the "rule of thumb" is that soft tissue healing takes 6 to 8 weeks. Healing continues after that, but that is when most docs allow the more active parts of rehab to start (after surgeries that involve cutting/repair of muscles). Some docs allow earlier active motion depending on how stable they feel their repair was. (And of course, if no muscles were cut, you can typically start active motion much earlier.)
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We are supposed to get a FOOT of snow tonight! Off to buy ingredients for French Toast- bread, milk, eggs!
I have a good excuse not to have to shovel- sorry it's more than 10 pounds! Poor hubby- driveway is 200 feet long
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OMG, a FOOT? Good grief groovygirls!!! Hope you have a nice, cozy day inside!
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Groovy is right - big snow in these parts tonight/tomorrow - we won't get much 'cause we're so close to Boston, but West & North of us are going to get socked. DH has gassed up the snowblower, is out getting the Halloween candy (don't want to go out tomorrow just 'cause it's going to be nasty, despite not so much accumulation) and I too am PSYCHED to be able to watch the show w/o feeling at all guilty about not helping out!
Before the rain started here, I got out to my first post-op soccer game of the (now almost over) season. 40 degrees, windy and gray, and my DD's team lost (the usual), but it felt nice to be out w/everyone, cheering the girls on and drinking hot cocoa on the sidelines. Still swollen (will it EVER end?) but feeling pretty damn good, otherwise. And for anyone who's not tried PT, I cannot say enough about the benefits I've felt, at least - I'm in such a better place, despite the restrictions, and have only had 2 real appts. Ahhhhh.
Hope you're all warm & dry - I'm by the fire as I type!
Sarah
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