Clinical Trial E5103

Janet--so far I haven't had too many foot problems. I have had some neuropathy in the toes, and sometimes bottom of feet, but it comes and goes. Last week was good (after taxol #8), and I hope it's the same as I finish up (YEAH!!!) . I was told to always wear shoes or slippers. I wear closed toe to work, since I teach (don't want kids stepping on my right now). I find that when I walk alot that supportive light hiking shoes really  help.  Also I take the L Glutamine 10 mg/3x a day and 600 mg. Alpha Lipoic Acid. I had on a B6 tab.

So far I've had no nail problems. I make sure I lotion  up good and use Burt Bees cuticle cream lots. Don't know if it helps. Hope you can KEEP ON DANCING!!!

Angie--Interesting ? re rads. I get unblinded on Weds., and I guess I'll have to ask my rad onc about that  if I'm on the C arm and decide to go on.  Thanks kfinnigan for the input, and I'm glad you made it through rads ok.

It's windy but clear here in Berkeley. I hope I can get enough work done to get out to the garden and those runaway weeds!

Hey Kim - Thanks for the reply.  I'm just going to keep assuming that I won't have issues until I do, I suppose.  That's great that you've had no nail problems - I know alot of ladies suffer from that on Taxol or Taxotere.  Hope you got your weeds under control - we had a warm sunny day in DC today and I was doing some of that myself.  It was nice to be outside.

Kim, keep us posted on the unblinding!!!

Another nice day on tap, make it a good one!

Brena, where did you cruise to?  How fun and exciting to meet some others!!!  Welcome back.

Brena, how exciting regarding the cruise!  I bet that was comforting to be on a Survivor's cruise!!  I hope your work holds out!  So many are having tough times it is so sad.  My photo is recent, about 3 wks old now.  My hair started growing back in Decemember while still on Taxol, which my onc said happens (she didn't tell me until I mentioned that my hair was coming back!).  Had a scare last week from my PCP.  I posted on the Motivation thread also.  I have been having neck/low back, right hip issues since mid Feb when rads started and I was only sleeping on my right side and months of chemo doing nothing but sitting/laying.  So my PCP tells me her mom died of bc at age 51 and complained of hip pain and turned out she had mets to the bone.  She freaked me out!  She had me get xrays to the hip to rule out lesions (last Thurs.) and I didn't find out til yesterday that the xray was normal.  I saw a physical therapist today.  My pelvis is rotated forward on the left side and creating problems in my back/legs and up the spine.  So he did stretches with me and sent me home with homework (exercises, stretches 2 xs a day) and no walking or stairs for exercise til I get stronger in my pelvis area.  

I am getting to go to Maui via Seattle (having dinner with sister in law and her DH on Sat.).  We will be gone for a week!  I am sooooo excited!! 

Hope everyone is hanging in there and doing well.  Have a nice evening!! 

Hey there,

 Yes I have decided to participate in the trial!!

SHELL

Shell, if the port bothers you, it does get better. I had mast. on left and port on right, so yes, neither side was friendly and I could not sleep on my back. No way. a few times I slept in a chair. It took longer than I anticipated for the port to stop tugging, but it did.

I finished chemo but will keep the port for awhile. It made everything much easier - I watched others every week have an IV and I was so glad to have my power port.  sometimes if the seat belt or something snags it - not so good

Hang in there for May 11th. congrats on the trial -

Kim, I haven't been posting recently, but saw your post on being unblinded.   I will find out next Thursday where I fall.   My onc told me a couple weeks ago he is sure I am getting the drug.  I definitely have mixed feelings about continuing if I get in that arm.  Especially with what has recently come out regarding the Avastin.   We'll see.  

I have been very weak and had to have 3 transfusions during my Taxol treatments.  My hemoglobin just wouldn't stay up.   I was amazed today.  I thought it would be really low and it actually went up .2.   Last week I was at 9.4.  Today 9.6.   I've been trying to think of what I did differently this week.   Haven't come up with anything yet.  

To all others in the group, I haven't had time to go through all the posts, but hope everyone is doing well.  

kfinnigan  So glad your xrays showed no cancer although I'm sorry for that pain on top of everything you've already gone through. I hope your trip was awesome! 

Shell  I think I'll be starting chemo and the Avastin trial the same week as you.  I get my port put in this Friday.  Is the medi port that you got a brand?

 It's been 22 days since my lumpectomy with 12 nodes taken and I developed a hematoma and adhesions. Both so PAINFUL.  My right arm is pretty frozen up.  If I known this would be so painful, I would have just gone ahead and had the mastectomy.  Did anyone else have either of these complications?  I'm so tired of taking pain meds.  She was able to drain part of the hematoma a few days ago and that helped a little.  She (my BS) is putting in my port Friday and said she'll tear the adhesions loose.  This pain has me feeling a little discouraged.  I still think I'll be able to start chemo within the next 2 weeks.

 I hope everyone else is doing well.  I haven't posted for awhile but I always check in.

SHELL 

Thanks so much.  Your surgery is about a month before mine was so I'll hang in there.  I just thought I would bounce back I always thought lumpectomy sounded so trivial.

I'll see my BS this afternoon and find out what kind of port and what kind of anesthesia she'll be doing on Friday.

 This is gross (maybe not to a nurse) but last night I stretched it OUCH for about 40 minutes and felt an adhesion POP near my elbow.  She said if I could pop them loose it would be a good thing.  But I still have the big cord under my arm she'll have to pop loose.  I'm trying to use it and I walked for an hour yesterday.  I heard that if you try to walk during chemo etc when you can, you do better. We'll see...................      PS what is HTH?

Hi, foobs,

Just wanted to say that what you're describing sounds like it could be cording, or Axillary Web Syndrome (AWS). Stretching is good for that, but not to the point where it hurts. Snapping the cords does relieve the pain, but it may permanently damage the thrombosed lymph vessels that cause the cording and increase your risk for lymphedema, so do take it easy until you know for sure what's up. Here's an information page on AWS:

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

The medical professional best trained to deal with AWS (if that's what it is) would be a fully-trained lymphedema therapist. Here's a page about finding one near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

SHELL, just wanted to suggest that you might want to consider a visit to a lymphedema therapist too. S/he would be able to do baseline arm measurements for future reference, give you personalized tips for lymphedema risk reduction, and fit you for a compression sleeve and glove to wear prophylactically when you're active, exercising, or traveling. S/he could also evaluate that side and armpit swelling for early truncal lymphedema. Sadly, our doctors are slow to recognize or diagnose truncal lymphedema (or any lymphedema for that matter), but leaving it untreated leads to serious infection risk and fibrosis. It's also much easier to treat and keep in control when treatment starts early (it's staged, like bc is, and progresses inside, with tissue changes and further lymphatic blockage). I sure hope it's not lymphedema, but well worth early intervention if it is.

HTH! And gentle hugs,
Binney

Binney & Shell

Thanks I'll check this link out.  I can't imagine this big cord ever going away without doing something but I sure don't want to cause further damage and certainly not lyphadema! 

I have an appointment tomorrow (finally!-- a month after surgery) to see a physical therapist who treats breast patients.  Boy do I have lots of questions for her.  The LN/arm issues are scary and painfull! 

Re the compression sleeve.  My Dr made sure I had one before I flew to Houston last week.  I understand we can't fly without one from now on, Or do heavy yardwork, exercise, etc. 

I think we all have to be our own advocates and make ourselves heard.  I don't think its healthy to feel mad all the time but damnit, I want my concerns addressed!  And HELLO before its too late to undo some damage.      Ok thru venting now.

Hi Shanagirl,

I am so sorry to hear about your diagnosis. I am in Central Jersey and got my treatments in Overlook hospital. I was in clinical trial (E5103). Brena and others were ahead of me and I got a lot of advice/support from them.

Where in NJ are you located? I guess you will be having dose dense chemo? Good luck with everything - we are here, if you need any help.

Desi.

Hi all, just checking in and I see some new folks here.  Welcome.  I get my 4th and final AC tomorrow, then two weeks later my first Taxol.  I'm still blinded at this stage with no idea whether I'm getting Avastin.  I've been tolerating the AC pretty well so far, but I'll be happy to get past it.  The biggest issue I've had is some pretty extreme fatigue, but even that comes and goes and I've been able to keep working, dancing, doing yard work, etc. more or less throughout treatment so far.  There are definitely days when I'm not up to doing much of anything, and the stretch of time to bounce back to something close to normal has increased with each round, but it's been okay.  I'm a bit nervous about the shift to Taxol because of all the descriptions of neuropathy that I've read - not looking forward to that and hoping I can escape it.  We'll see.  Good luck to those just getting started on all of this - my best advice is to relax, take things as they come, and don't necessarily assume you're going to feel like crap all the time, because you'll probably feel pretty good often enough, and you should take advantage of that keep some degree of normalcy in your life.