Clinical Trial E5103

Toxel #8 tomorrow. Hey when do they usually unblind you anyway.

Chemo has caused my blood pressure to stay in the hypertension level so last week they put me on blood pressure medicine (mild) to see if it helps.

Did have one question. I don't know if this is result of Toxel or blood pressure medicine or just the heat (and boy has it been hot in mid missouri this week) anyway. the pointing finger on my left hand and the thumb on my left hand as well as the area between all the way to my wrist has been swollen and tight and painful. As well I have felt the area between my arm pit and my elbow feeling tight as well. I will talk to dr about it tomorrow but wanted to know if this has happened to any of you. The left side is also the side where I had the nodes removed and I have been very careful on that side because I did not want to develop lymphoma.

Gramof3 - I was unblinded in December and am on Arm C!  The only one at our hospital on the arm that continues.  I had 3 more to go, however, I was exposed to the Swine Flu H1N1 virus (my daughter is a nurse and caught it from a patient).  I've been on Tamiflu for it since Sat. so my clincial trials nurse called the Chair of this study and she along with an oncologist said I should skip this dose (cycle 16) altogether and get back on schedule with the next one in 3 wks.  They asked how I felt about this and I said 'oh goody its like playing hooky'...they agreed that in the long run I will still have over 90% of the Avastin so I said ok.  I would have had to go in today and it feels so good not to have to go!!!!  So I will be checking back in to see what Arm you are in!!

How's everyone else doing?  Hope you're all hanging in there.  Hugs 

I didn't qualify for the bis trial!!  bummer  

I had my last  A/C 3 days ago!   I started chemo DD on May 14 so I'm just barely ahead of you, TexasRose. 

I'm incredibly tired but otherwise doing pretty well---just have an overall horrible achy sicky feel.  I have high blood pressure too but so far not high enough for meds.  Nurse thought MAYBE I might be getting the Avastin??  My eyes are bugging me too but seem slightly better this round. hm??  But the hair thing.............. we shaved mine but now I'm not sure it was all going to fall out.  I have (had) thick thick hair and still have lots of stubble on my head.  ((driving me crazy)  But very little hair anyplace else.  Still have eyebrows and eyelashes. Even if all your hair doesn't fall out, does it stop growing?  Does anyone know?

I know I shouldn't but I want to know how this Taxol is going to be.   For those of you finished, did you have an easier time with Taxol? 

mborn63:  Your hand/arm problem might be lymphedema.  I certainly hope not but can you get into see a lyphedema specialist?  My understanding is that they're usually occupational therapists trained to work with lypmph node removal side effects.  I have one who has helped me a lot.  I found I had to be persistent to get an appointment.  Let me know how you're doing now.

foobs- For me the chemo is definitely the worst part. No question. I already had my surgery- left simple mastectomy, SNB and port placement. I still have some swelling and numbness, but the surgery wasn't really that bad. I am not going to have radiation since I did the mastectomy and they got clean margins. So, for me, definitely the chemo is the hardest! Congrats on being done with AC!!! You are right- I am not far behind you!

You know- I should add though that I haven't decided on reconstruction yet. That might be hard. My hospital will not do reconstruction until you are finished with treatment. I waffle back and forth on whether I will have it at all.

Hi Brena,

Thanks for enquiring about my health - actually the rib pain was due to intense cough, which was due to pneumonia. I had two rounds of antibiotics but the ribs were sore. The cough has gotten better so has the pain. I had no injury to the ribs. Radiation has weakened the ribs/muscles.

Since last thurs (June 25th) I have UTI with possible kidney infection! Antibiotics again!! I don't know when I'll be 'normal'! It seems like it is one thing after another!! Plus the work stress!

Enough of my venting. How are you? How's is your work?

Hope everything is going okay,

Take care,

Desi.

Hi girls!

We took off to Lake Tahoe for the weekend and it felt so 'normal' to be back in the mountains breathing such fresh air.  

TexasRose and Foobs - Congrats on A/C #3 over with and for A/C being over with!  A/C was the worst for me.  Also had the 4 DD A/C then 12 weekly Taxol and now the 10 extra Avastin (well 9 since we dropped one).  I had to take off practically every week after A/C from work, but with the Taxol I just took the day after off to rest.  I would take breaks during the work day and lay my head down on my desk sometimes.  The Taxol was much easier than the A/C, and that's what my onc told me would happen.  She was right on with everything she has told me.  I had shaved my head right before A/C #2 and wondered whether I should have done that, but once I started the Taxol, it seemed less stubbly up there and also that's when I lost my eyebrows/lashes and hair everywhere else was during Taxol, but then at the end of Taxol, my hair came back!  My onc said yes your hair grows back while on Taxol!!  Just watch the fingernails, mine would hurt but they never came off...I have slight numbness in two fingers on my surgery side and sometimes two toes will feel a little numb after a lot of walking.  The Taxol did do some funny things to me though...my heart rate went crazy, so they put me on meds that lower the blood pressure (mine has always been low normal) and that lowered the heart rate...took that through the Taxol.  

The first Taxol is longer...warning, they give you steroids and benadryl before the Taxol, the minute the benadryl hit the IV I couldn't keep my eyes open, you just want to sleep!!!  Good luck girls!!  I'm thinking of you! 

It gets better!!!

Desi, you poor thing with the infections!!  Get better girl, we're thinking of you!

Fellow E5103 Trial members:

   I think I posted to this thread a few weeks ago; I'm not sure. I was interested in opinions about traveling between A/C #3 and #4 (we were getting a new grandbaby in RI--we live in Iowa). At any rate, I've been trying to read all of your posts to catch up on everyone, and I've so enjoyed the wealth of support and info. We did indeed travel to RI. The airport/plane experience was a bit of public humiliation with a mask, gloves, bald head, and wheelchair!! But I sooooo needed to meet our new family member. My counts crashed a few days after arrival, but I was able to rock the baby for about 4 days straight! Counts rebounded in time to fly back to IA & take A/C #4.

  I now have questions, also, about the Taxol. I'll have my first weekly taxol next Tuesday, July 7. I have been instructed to take 5 steroid tablets (Decadron) 12 hours before chemo and then 5 more 6 hours before. Did anyone else do that? Does that ever get reduced? I have a son getting married in Sept. and the steroids have already caused weight gain, and I haven't been on this massive dose yet. I bought the "mother-of-the-groom" dress last Sept., and I fear I will burst the seams!!!  Also, what side effects have any of you experienced with Taxol? Is it truly easier? Will I feel more "normal"? How long before I lose eyelashes/eyebrows (another wedding concern).

   Thanks for all your help!

Deb from Iowa

Deb,

My treatment is like Desi's was--Benedryl then Decadron in IVs just before the Taxol.  I did not have much in the way of SEs with A/C and, other than discolored toenails, the Taxol has been no problem. 

Congrats on the new grandbaby! 

Good luck with the treatments--

Kfinnigan:   Thanks!  I know you know how glad I am to be done with A/C!!  You've been an inspiration to me when I didn't think I could get through another 36 hour day!  ha

I'm not even worrying if I'm on Avastin or not.  I figure, why worry when I can't do anything about it.

TexasRose  You had your 4th A/C today right?  When you get back online let me know how you're doing.  I'm on day #7 after my last one and today can feel my strength coming back!  It didn't take me as long this time as I thought it would.  I wish the same (or better for you)   I KNOW you're celebrating being done with nasty A/C!!!   I have no bone pain today, just watery eyes, nose, fatigue, no taste buds, and I think I have 3 nail beds turning darker, but no pain there.

 I asked my Onc if I could have the absolute minimum of steroids with the Taxol and he said I HAVE to have 20 cc the first time but he can cut it back to 10cc if I do ok.  IS it cc or ml??--oh well, what the hell, I know he's willing to try half as much and I'm just glad for that!!  My heart rate goes way up on steroids but I haven't noticed the weight gain----yet??  yikes

RockbranchDeb:  that sounds like LOTS of steroids.  I hope you handle this well.  I'm sure your Dr has a reason for giving you so many.  HUGS to you all! 

Foobs- My last AC is next Tuesday- the 7th. I am so ready to be done with it!! But the third one has really kicked my butt. I hope #4 is easier!! I'm getting nervous about the Taxol.