August 2013 Surgeries

So glad you had a good sleep Lisa. I don't have expanders so mine is easier to handle. I was told at chemo teaching that they couldn't give dates in case chemo had to be held off for a day or even a week if we weren't tolerating it or numbers off or infections. Mine are 3 weeks apart.

The rest of the information was routine and i learn more from you guys.

Pam, Great news about the scans!!!  So happy and relieved for you.

Honeybair, Happy Birthday!  I used to not look forward to birthdays.  I think I will appreciate them a bit more now.  I hope you are getting to do something special for you today.

Lisa - I hope all goes well with your tests and that your results are all good.  My plastic surgeon did not seem to care abotu the timing.  He said I could space the fills out more, but to schedule them every 2-3 weeks at my convenience.

Wrenn - You are doing awesome and are such a positive force here.  I am glad that your meds are helping.  One foot in front of the other will get us all across the finish line.

Jo - I will send you a PM with the info.

So far so good for the chemo.  I had a long wait to see the MO first; they were way behind.  Then he forgot to sign the orders (we are all really good at waiting aren't we???), but once everything was finally squared away, all went fine.  I had a bit of a bad taste in my mouth, and the cytoxan made my nose feel weird, but they were both short lived.  I iced my hands and feet, chewed on ice, and wrapped my self in a blanket to stay warm!  I have not had any other side effects yet, and am hoping that continues, but I know that days 3-5 are worst and the low blood counts come a few days after that.  I hope everyone has a great weekend!

Pam - I guess you and I will be together in this new path we must follow; our chemo is the same meds and same schedule.  I wonder, since Wrenn and I are both Triple Negative, why it is that we have different meds - I would have thought she and I would have similiar chemo.  But mine is the same as yours and the same that Babs had and neither of you are Triple Negative. 

Do you, or does anyone else, know how that works?  I've really stayed away from researching anything online about chemo.  There is a lot that can be very scary about it and it is so individualized in how it is given and how it affects each one of us that I just want to listen to what my MO tells me and ask questions here (sometimes the internet can be "too much information").

Since you will likely be participating in the Oct 2013 Chemo thread and I'll be in the Sept, I do hope you'll continue to post here so you and I can keep tabs on how each is progressing. 

I didn't specifically offer to take any unpopular time; I just took what they gave me.  It sounds very convenient for me, however, since it is on Thursdays and I'm told with the meds being used that days 2-4 are going to be the bad fatigue days so that falls right on the weekend (which is what I wanted).  It also works out best for work; it is the day that is least disruptive for my not being in the office and then my husbands work schedule has him off every other Friday and that will allow him to drive me to my family doctor for the Neupogen injection if I'm not feeling up to making that drive.  I'm scheduled for the first morning appt; labs at 8:10, meet with MO at 8:50 and chemo to follow.  So that SHOULD mean that everything should run smoothly since there is very little that can set back my MO's schedule to delay things (I love 1st morning appointments!).  So all in all, it seems like it is going to work out very well.  Given, of course, that I remain on that schedule (like others have said, anything could change along the way).

One of the women where my husband works also had breast cancer 3 years ago.  She told him today that she, too, was triple negative and made the same decision as I to not have a chemo port.  However, there were problems and she ended up having to get one.  She told my husband to tell me "the port is the Cat's Meow" - she highly recommends it as it made the experience much more tolerable.  That's good to know - it's encouraging to hear others experiences should the need arise that I have to end up getting one.  I spoke with my Care Manager yesterday late afternoon and asked her "if something comes up that I need to have a port, do any of the surgeons at the UW insert them in the arm"?  Her response was that she has never heard of anyone getting a placement there - so I'm thinking that will not be an option if the need arises that I must get one.  Not encouraging - because I really don't want anymore surgeries on my chest.  So I'm just hoping and praying that my veins stay healthy and will get me thru this.

Wrenn - you and I think a lot alike, I'm finding out.  I think I learn quite a lot from everyone here and actually feel more prepared when I meet with my doctors because of the different conversations we have here - I am continually thankful I decided to "check this site out" even though it took me 3 weeks post-op but it's so important to connect with others going thru the same thing at the same time and we're able to bounce things off one another.  Do you perhaps know why, since you and I are the only triple negative's here, we have different meds being used?  I'm really very niave about how chemo meds are chosen and I'm just curious because I would have expected you and I to be receiving the same therapy.  But Pam is on the same medications and schedule so she and I will be able to "compare notes' along the way - I feel better knowing "one of my ladies" (as you all have affectionatly been designated as in our house) will be with me in this journey.  I know, we're all different, but it still gives me comfort that Pam will be a companion going thru the same regimine as myself.

KBeee - I'm so glad your first chemo went well.  Can you tell me something, though?  You said you iced your hands and feet and chewed on ice.  Then you said you wrapped yourself in a warm blanket.  Can you tell me why you iced your hands and feet?  And is that, along with chewing on ice, what made you chilled that you wrapped up in a warm blanket?

Also, how long did your chemo take?  And were you sent home with any medications for likely side effects they anticipate you might experience?  Sorry for all the questions.....but your the 1st post surgery chemo in our group. 

I hope that the SE's that you experienced so far are all that come.  That would be nice for you and encouraging for the rest of us that will be following in your footsteps.  Is your head staying warm enough?  I know the weather here in WI turned a little chilly....I assume Iowa is the same - so curious if your "hair challenged" head is feeling the chill.

How is that "angry" looking scar, by the way?  Is it looking any "happier"? 

Poodle-mum - haven't seen a post from you for a while....I hope everything is OK.  Perhaps you're out and about more with your little buddy......sure would like to hear how you're doing.

Take care everyone!

Poodle-mum - sorry to hear about your family issues.  I hope all gets back on track soon so you don't have that stress in your life.

Sorry to hear your not feeling great yet, either.  Sounds like you're doing the same but not really making a lot of progress - you really are having a hard time with recovery and my heart goes out to you.

Great job in raising $500 so far for the Run for the Cure!

Can I recommend something that might make you more comfortable?  I cannot wear any type of bra.  I tried but the band goes right over where the holes are trying to heal in my sides.  I was given the OK to wear a bra by Plastic Surgeon BUT when I went to get fitted for temporary prosthesis (aka foobs) the nurse there told me I should NOT be wearing any bra until 10 days after the tubes/drains are removed.  As soon as I heard that - I went with it (given how painful wearing a sports bra was - so painful I didn't last an hour in it before I was begging my husband to help me out of it!).  I hopped online and ordered some tube tops.  I ordered several different kinds; some regular tube tops, some tube tops that had gathering in the center and modesty pads (good for me so I could put my silicone enhancers or foobs in the pockets instead of the modesty pads), and finally the ones I wear most often....tube tops with pockets (for foobs or enhancers) with removable straps.  That's important since I have nothing left of a natural breast so trying to keep the regular tube tops in place was nearly impossible.  The ones w/o straps will not go to waste, though, because I understand when I have the exchange for the final implants that tube tops are actually recommended to wear post-surgery.

I purchased mine at Amazon.com - and I know you have access to that in Canada.  They were really well priced and I received them very quickly.  They wash and dry very nicely and the bottom banding is almost 1 to 1-1/2 inches lower than a regular bra so it does not cause any discomfort where you say your sports bra is bothering you.

I wouldn't recommend you purchasing these if you were progressing quickly in your recovery.  But you seem to have had a lot of issues and I'm thinking further recovery will continue to be slow (I don't mean to bum you out by saying that - I'm just saying what I think given how you've done so far).  If you type in:  anemone seamless removable strap bra you will see them come up in a 2 or 4 pack.  I paid under $9.00 for a 2 pack - so very reasonably priced even if you only need them for a month!

These have been a godsend to me!  My sides are still very sore so even if I could wear a bra, I wouldn't because it would only aggrevate the area.  Probably the best $9.00 I spent for post surgical items to help with this "new" body I find myself with.  And I can use these as I'm expanded so I'll get plenty of use out of them.

I do hope you feel better soon.  I feel so bad for you and wish things would just get better.  But our bodies do what their going to do and we are at it's mercy sometimes. 

You take care.  Rest is good; get plenty!  Our bodies heal when we rest so it's a good thing.

I'm keeping you in my prayers.

Aviva - my PS told me I could simply use vasaline.  Just to soften the area and to attempt to lessen the scarring.  They said there is no need to purchase "special" products - vasaline is what they recommend to everyone.

Lisa - I think some of the choice of chemo is what is "best practice" in a certain region along with Oncologist's experience with patients and added in as well is all of our info - dx, tumor size, lymph nodes, stage, etc.  It's interesting that the woman at your husband's work place changed her mind about the port.  What I'm hearing you saying is that you don't want anything all inside you and you'd rather not have any more going on in your breast area.  One thing you might want to look into instead of a port is a PICC Line.  It's more similar to a traditional IV than the port.  It's something external and usually in your arm.  People do use them for Chemo, it's not a new thing.  It's just that the short tubes which are taped down are on the outside (just the needle inside) so some find them a nuisance.  However, given your other concerns this might be more of a compromise.  Something I had not thought through until I was in the ER was blood work not related to the chemo/cancer.  When I was in the ER they needed lots of blood samples to check for an infection. Our local ERs are not comfortable using the port for blood draws and I was really OK with that since I'm kind of protective about it so it's in tip top shape for chemo. So they needed to  use the viens in my arms.  I've been told that if they can help it I probably should limit the blood draws to my left arm because of the possibility of lymphedema. Because these blood tests originally called for two blood draws - one in either arm - they compromised and did them both in the left arm but 45 minutes apart. So there were two draws from my left arm. I'm not sure how that would have effected chemo or not if I had it the following week. I think the port/picc line is a personal decision, just wanted to give you more information.

I find it odd that some places routinely use arm ports, some know of them but use chest ports, and some have never even heard of an arm port? Weird there are so many varations

Poodlemum - So sorry to hear about your family issues.  Way to go in raising $500.  That's awesome!

Lisa -  I iced my hands and feet 15 minutes before, all during, and about 15 minutes after the Taxotere infusion.  It is supposed to help minimize peripheral neuropathy.  I am also taking vitamins B6 and B12 for that.  I really need to NOT have numb fingers when this is all said and done because of my job.  It also can help to reduce nail loss. My chemo nurse, when going over side effects, said "good; I am glad to see you are already addressing and trying to prevent the neuropathy; I wish the doctors suggested that." (Of course I got the idea here and then did my own research).  I chewed ice to help prevent mouth sores.  The ice constricts your blood vessels to reduce the amount of drugs that get to those areas.  The chemo room itself was very chilly, and I am always cold, so I did bring a fleece blanket, and they had other blankets too. It is getting cooler in Iowa too.  My wig kept my head warm.  Outside, I have been wearing a halo wig and hat, which I really love.  It is really comfortable and warm, and it looks just like my previous hair.  My scar is healing a little better.  I go back to PS on Friday, which is near when my counts should be the lowest, so that will be a good time for him to evaluate it.  If it is going to get worse, it will by then, and we can address it.  it does seem like it is healing...just slowly.

Also, the PICC line is a central line, that is placed in the upper arm.  It terminates in a large vein towards the heart, and is usually put in guided by ultrasound.  I do not know if it increases lymphedema risk or not.

Wrenn-  I am having 6 TC treatments, each 3 weeks apart.  I am not sure why I am getting 6 instead of 4, other than it seems to be the standard with this doc (they actually do not use TC that much...I had to bring it up, and he did like the idea.  They are using it in a research trial here, comparing it head to head with AC-T, but on more aggressive/advanced tumors...that may be why their protocol is 6).  It seems that about 90% of the people on the TC thread are getting 4 rounds.  The day lasted longer than most others will.  I first had to meet with a person about a research study.  That was about 9:45.  They then drew blood.  I was supposed to see my doctor at 10:20, but it was much closer to 11, becasue they were behind.  I then went upstairs to chemo room.  The doctor had forgotten to sign the orders, so that resulted in more delays.  They then got the IV started and rain in steroids and antinausea drugs.  That took about 20 mintues.  They then started the Taxotere, which ran for about an hour 15 minutes, or an hour and a half.  The Cytoxan then ran for a half hour, though they said they somethimes slow that down and run it over 45 minutes...depends on the nurse.  They ran in about 50 cc of fluid after that, disconnected the IV, and I was on my way.  They did spend a little time at the beginning explaining the proceures and side effetcs, so future visits will be quicker.  I was on my way n=home at 2:15. 

The best thing that has helped me mentally and physically is to get out on a walk every day.  It really clears my mind!

I hope everyone is having a great weekend.

Lisa - Diana on the Sept chemo message board has a picc line so she may be able to give you some more details. It is not permanent but like the port can stay in for awhile. You should probably ask your Dr about it to get the most accurate information.

Babs - I'd like to know from you what you can tell me of things I can do either before, during or after to lessen the most common side effects of this first round of chemo.  I'm reading bits and pieces of what others are experiencing, but it's all incidental reading (because I don't want to read about some of the SE’s others are going thru that don't apply to me and the cocktail I'm receiving - know what I mean?).  I'm trying to just stay clear of reading much of anything in the Sept 2013 Chemo thread until after I've at least received my first round.....

KBeee mentioned chewing ice and gave me the reasons why - good to know and how do I know the nurses would suggest doing this?  I don't!  I've read about "white ick stuff" in the mouth after treatment - do you know what that's about and how to avoid it?  I'm reading bits about thrush - what exactly is that and how to avoid? And on and on……

I’ve been to the Chemo thread and have many of the suggested items on hand already and those I still need are on my shopping list.  I’ve a decent start of head caps, hats and scarves and Friday appt for wig fitting.  I still need to shop for the items I found in the binder from MO on the “heavy calorie foods” that I MUST get (I’ve lost so much weight in last year it’s scary and cannot afford to lose anymore!).  Although I do worry; I have high cholesterol already and am pre-diabetic and these suggestions don’t look like they are good for either of those issues (is this one of those “battle the worst problem first and worry about the others later?).  I’ve no clue how chemo is going to affect me….but I have much on hand to cover anything that might arise (I hope!).  So I don’t need any tips on that (they’ve done a great job at that thread informing us newbies what we should have on hand)!

Any others who've got input, I'd love to hear (you can see my chemotherapy meds at the bottom – they’re posted as Public) and have no port.  I’ll be getting chemo via IV.  My past experiences are that medical personnel don't always tell you a lot of things.......so I'm turning to you all to give me a clue.  I'm 5 days to start of chemo and want to do whatever I can to lessen SE's and since I was told nothing by MO or chemo nurse at my first visit.....well, I have little time to get things in place and do what I can to keep some of these things from happening (and quite frankly, the binder I received only touches on some of these issues - no info on what to do to avoid them - big surprise! - see what I mean about not always being told.....?????)

As always, my greatest gratitude to all who can help.  I really don’t know what I’d do without having this forum to turn to – we’re all in this together at the same time and everyone is so supportive and encouraging and helpful!  It’s truly been a Godsend to me!!!!!

Lisa, I could almost cut/paste your posts they are so much how I am feeling (except for the needing to gain weight part). It does make it easier knowing we aren't alone because most of the time we are SO alone in all of this. My daughter was supposed to come over yesterday to help with some things but had to work late and although I know she has no choice when it comes to work I felt sorry for myself as if she didn't care. This ordeal is so horrific to me that I am puzzled that people just go on as if it is no big deal.  I find it hard to be rational.  

While I feel bad that you are going before me I am also relieved to know I can come here and read about your experience and everyone else's.  We really hit the jackpot with this site.  I was not even told anything about triple negative all through this and when I saw the term on here I went back to look at my pathology report and deducted that I had 3 negative notations and so that must mean I fit that category.  

My surgeon couldn't see me until 5 weeks post op and then said "everything is fine. See you in a year".  No word on why I look like I was attacked by a shark and I really didn't feel like she had time to answer any questions so I didn't bother asking. If this forum hadn't been here I would have felt really lost given the lack of help from my "team".  I am hoping the chemo "team" is more responsive but if they aren't I still have you wonderful women.

I hope everyone has an ok day. xoxo

I am 24 days out from my BMX and having trouble with incisions. I have open wounds on both sides. Left side is looking better but the right is just a mess with A LOT of drainage. I did not have reconstruction. Have any of you ladies had trouble with your incisions healing? How are you handling it? I totally didn't expect this and I'm afraid I am not coping well or being patient enough with my body.

Still have to sleep in a recliner. Tried sleeping in my bed last night and was miserable.  Woke up with achiness and soreness.  When does the misery of this surgery ever end? 

rant away.

Jennylee - I feel what you are saying. I had my surgery exactly one month ago today. I had a bilateral mastectomy with a skin sparing and they were able to re-attach my nipples (or at least create as best as they could using what they took off). I did not have artifical implants, they just used my own tissue so that I could at least have some girls when all was said and done.

My incisions healed well on my right side. My left side was a bit more complicated through surgery, I had DCIS and there was a lot more work done on the left side.  My problem is that I developed a seroma (first on the left side, then a few days later a smaller one on my right).  The seroma decided to start draining from the areola on the left and then it also broke the skin below, partly through the incision and then went further on.  I've had it checked for infection and they say it is ok.  It is about 3cm in length now, 1cm in width and 1/2cm in depth at one particular point. It is draining, which is good, because it is caused by the seroma.  However the skin around it is quite inflamed (despite the reassurance that there is no infection).

I do not need chemo or radiation, as they were able to get everything out.  However, I am required to do breast massage therapy three times daily (I admit lately due to a whirlwind of family emergencies, I've become lax and when I began again two nights ago, I realised the importance of maintaining this therapy).  The massage therapy is to maintain blood flow in the breast, particularly to the nipples/areolas as they were re-attached. The right side did really well and pinked up within days whereas the left one was a bit of a question as it was more blackish at first, then after a week went to purple. It is greatly scabbed due to the drainage but the new skin that has begun to grow is coming in a pinkish colour, so I'm quite grateful for that.  Another reason for the massage therapy is to try to break down the seromas which have actually increased this past week (no doubt to my negligence, as I now have one roughly 3cm round and 1cm deep under my left areola) as well as several small but new ones on my right side.  This definitely aggravates the opening at the incision and ribcage because that is where the largest seroma is, with one being 4cm round and roughly 3-4cm deep directly on the opposite side of the incision. So the benefit of the therapy will be to try to get those to re-absorb into the body or most likely in that particular area, it wil drain from the hole.  The other reason for the massage therapy is to try to prevent build up of scar tissue as there was so much work done in that area (as we all know, this surgery is not a walk in the park).

My incisions were closed by disolving stitches, both inside and out. When I asked the doctor how many stitches (I always want as much detail as possible, he said there were too many to give me even an estimated guess).  Was your incision closed by stitches or staples? Has the surgeon checked the incision site to eliminate infection?  Do you still keep dressings on the incision site?

I must go for now but I will be back later.