Meggy

Hi, has anyone had success doing delayed reconstruction with expanders after radiation?  I chose not to put in the expanders with my double mastectomy in June 08 and finished my rads a week ago.  Eveything under my scar line is fairly smooth but I have a 2 inch by 2 inch patch that is really rough on my chest and seems to be slowly peeling off. 

I really don't want all that tram flap surgery.  I just can't take another major surgery.  I really want to just do expanders.   If you had success doing the expanders after the fact, please tell me your story.  I could really use some inspiration.  My PS said he would wait 6 months after my last rad before putting in the expanders and trying.  I've got a really good PS at Stanford but still I really need to hear some optomistic stories.

 Thanks      -Meg

Mine is bilateral too....I should have mentioned that.  Also, my swelling is on both sides of my back.

Binney, are you stroking your hand accross your skin or sort of gently pulling the skin in one direction.  Are there two schools of thought on this?  I've tried the towel but maybe I'm pulling too deep...really just a light stroke there too?

 Did it take a while for your back LE to be willing to cross the waist?   Mine just seems so stuck there and now I've noticed a hard spot...a sort of lump...just above the waist  in the swollen area.

Did it take a while for you to notice reduced swelling in your back?

Also, does the Belise compression bra work if you don't have boobs? Do they have a special bra for the boobless?  I wont reconstruct for about  a year. 

atw, do you mean that you are directing the back LE downward and toward the front of your body, toward your belly?  I really need help on where to direct my back LE....it started in the middle of my back but then over a month, dropped down to sit just above my waist.  It seems stuck there.  Can you describe this again....did I get it right?

 -Meg

Hi can anyone recommend a good, certified LE specialist (tried and true) anywhere in the San Francisco Bay Area.  I live near San Jose but San Francisco is fine also.  I really want a referral from another patient who has had good sucess with their therapist.

Thanks! 

I got my first swelling after wearing a mastectomy sports bra for three days.  I think the bra may have been the cause.  Now so many of us have swelling aroung the bra line.  Maybe that bra line is the trigger.  Should we be wearing a compression bra instead?

Binney, when you said applied with gradient pressure, do you mean alittle tighter at the wrist and gradually less tight toward top of arm?

Binney, I really need your advice.  I was seen by a LE person and she gave me a really long list of steps to do myself.  At least a dozen and to do them takes like a half hour and really tires my arms (that I am supposed to be protecting).  I'd like to compare it to what you do since you are a pro by now I think.  It included placing my fingertips between my ribs next to my sternam to massage nodes there (horrible feeling)...  And massaging my left armpit nodes where I had surgery just 5 weeks ago.  It feels all wrong to me.

 Also the sleeve she loaned me cuts into my upper arm badly when I realized that I took it off.  She laoned me another sleeve (quilted) and I wore it one night and was worse by morning.  

I feel worse after doing all this not better.  I feel like my body is saying quit it....just rest.  Looking back on it I think the swelling was stable for the past week (forget the tummy part it turned out to be the stomach flu LOL).  Like I said stable for a week but now feels worse after doing all this stuff.  Do they have you doing all that?  Does it really work?  I took off the sleeve when I realized it cut in my upper arm so terrible...was that a good idea?

I'm on chemo and so soon after surgery...I feel like all this massaging is too much for my arms...feel like I should rest like I did after surgery.  Any advice?

-Meg 

No No No Absolutely not true...that's a crazy thing you read.  I think it is rather rare to die from chemo....not sure what the stats are but just keep your fluids up, take your anti-nausea meds and if they offer you a nuelasta shot TAKE IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Who cares if it causes some aches...TAKE IT!!!!!!!!!!!!!!!  We are a blessed generation of chemo takers...so much to help us through it. 

Thanks Gitane, I did finish my A/C but now I'm on to Carboplatin/Taxotere...the combo my oncologist wanted to use. I know, I'm a glutten for punishment.  I'm doing so much because as a triple negative there's no other treatment coming my way.

 How bad is Carboplatin/Taxotere...anyone know?  Hope its better than AC!

I posted previously about swelling but it has gotten so strange so I want to describe it blow-by -blow.  Has anyone expereinced anything like this?  Is it LE or maybe Taxol swelling?

On June 4th, I had a bilateral with full disection of nodes on right side and just one node on left.  I finished Taxol 3 weeks prior to that. 

On July 2nd my right arm swelled very slightly and ached.  It resolved by next morning but then repeated same symptons as day went on.

On July 4th, it hit me on my back.  I swelled a lot accross my back starting right behind the arm pits.    Then down my left arm but only slight swelling like my right arm.  My arm pit on right is also swollen.

 Now it gets really weird.  My abdomen has swollen up today very siginificantly.  I look 5 months pregnant.  What the heck!!!!   When I press on the swollen areas, they bounce back...even if I hold my finger down a while.  If there is any indentation, I can't really see it.

Has anyone had such sudden swelling in so many places?  

Does anyone know if the Taxol/Taxetere swelling tends to be permannat?  Is it like this?  I am scheduled to go on Taxotere/Carboplatin in just 2 weeks.  Yikes!!!

Could this be a blood clot?

I am seeing doctors tomorrow and went to the ER over the weekend but I'm not sure they'll have the answers....anyone ever heard of this? 

 Any thoughts would be a huge help. 

-Meg