Clinical Trial E5103

unklezwifeonty

I finish next week Kari.

sftfemme65

Hi just checking in.  Well I passed my 2 year mark from surgery in December.  Im still a nervous wreck about it all.  I just finished what I hope is my last surgery for my reconstruction.  Im still trying to loose weight and thats happening slowly.  I started having periods again...once in a while, anyways. 

I hope everyone had a wonderful holiday and we all have a healthy, healthy year !!!

Teresa

unklezwifeonty

Hi Teresa,



Nice to hear from a trial veteran!



Hi all,



I'm just wondering when my nose and rectal bleeding from Avastin would go away. Just getting sick of this side effect.



Also, funnily enough I got a formal letter notifying me that the enrollment in the trial was suspended yesterday! This is almost 2 months after I was kicked out of the trial because I had a reaction to Taxol and a few days after I read news that Roche has been allowed to restart enrollment.

kfinnigan

Nice to hear from you girls.  

Onty, I hope your bleeding subsides soon!  After about my month my rear did better and the nose is still doing its thing, but is SLOWLY getting a bit better.  I saw an allergist last month, he thinks chemo screwed up my sinuses, but he is going to do the scratch allergy test on me next week.  He also gave me prescription nose spray to dry up my nose, cause ever since chemo my nose runs ALL the time, I have kleenex everywhere.  But the spray has helped so much!!!!!!!!

I see my onc month next month.  Tomorrow is my one year anniversary of my last Taxol!

Always thinking of my fellow trial sisters!  TAKE CARE ALL!!!! 

unklezwifeonty

Kari

Comforting to know that the butt bleeding will improve!

Congrats on your anniversay!!!

unklezwifeonty

Kari

Comforting to know that the butt bleeding will improve!

Congrats on your anniversay!!!

jenn3

Kari - Wow, one year from Taxol.  When looking back it probably seems so long ago..........  Even though I wasn't on Avastin, I seem to have more sinus trouble.  If it's still the same after radiation I think I'll go to the ENT. With that said, I've always suffered with allergies and sinus trouble - the chemo may have just made things worse.

Onty - sorry to hear your still suffering with leftover SE's from Avastin. 

unklezwifeonty

Jenn,

Surprised to read your stats - I guess I had never paid attention before. 1cm and 4 positive nodes? Somehow I thought 1cm is too small for cells to start breaking away and making home elsewhere. Guess not.

TexasRose

Hi girls! I haven't been around much. I've been trying to reclaim my life and stay away from BCO. But you know we never stay away completely!!

Teresa- Congrats on two years!! I have started trying to lose weight also. I need to lose 15 to 20 pounds and rejoined Weight Watchers last week. I really didn't gain much with chemo, but I look so much bigger. Not sure why that is, but I don't like it!!

Onty- I missed you finishing your chemo!! YAY!!!!!!!! It's a nice feeling, isn't it? I'm sorry you are still having problems. My bloody nose lasted probably a month after I finished chemo, but I think mine came from the Taxol and not the Avastin. Funny thing is I had a nosebleed yesterday. I never got nosebleeds before!! Did you ask your onc for the Proctofoam? That will really help with the sore tushy.

Kari- One year from Taxol- WOW!!! My nose runs all the time too. I also make sure I have kleenex with me all the time. It just runs and runs. Drives me crazy!! The cedar here has been really bad and it's the only thing I ever had a reaction to before. The last few days have been a little better after the bitter cold we had last weekend. I'm hoping the nose running will stop soon.

Jenn- It's good to see you!! How are you doing since finishing up chemo? How's radiation going?

Best wishes to all the other trial sisters too!

I'm doing very well. I've had 3 Zometa infusions for the bisphosphonates trial. Very few side effects from it. I still have aches and pains on rainy days. And my big toenails are still giving me some problems, but so far they are still there. I was so afraid that I would lose my nails! I am back to my usual energy level. I have started working out again and feel really good. Mentally, I feel pretty good too. There are still moments when it hits me that I had cancer and I feel like I can hardly breathe, but they are brief moments. For the most part, I feel very positive.

I think of you ladies a lot. You are all in my prayers.

Hugs, Mary 

foobs

Hi Gals

So what's up with the runny nose??!! Same here!  yuk. 

   I finished radiation last week!!!  Still sore and tired but happy to be done. I'll be done with Avastin in May.  My joint pain (either from Taxol or Aromasin)--who cares as long as its gone, right?  disappeared after being on Femara first and then Aromasin for 3 months.  So if any of you are in pain from AIs,hang in there

  

Kari congratulations on your anniversary and getting so much behind you! I keep track of you because our dx is almost identical.  Don't know if you remember me.

 Mary  congrats as well.  we started this about the same time and I've been on the sidelines cheering you on and you've inspired me.  only difference is I'm doing the whole year on Avastin.  But I only got 6 of 12 Taxols because I had such PAIN with it. pain gone now.

 Its been a long long 10 months!

 Best of all the treatment does have a finish line and symptoms subside and then hopefully disappear.  I never thought I would feel this good again although I have plans to get more energy back.  ha 

kfinnigan

Hi ladies, so nice to see so many of you again!  AND FOOBS! yes I remember you, I smiled when I saw you post!!  I'm glad to hear your joint pain is gone.  Sorry you couldn't do all the Taxols due to pain, but also happy to hear that is gone as well.

I forgot to mention my fingernails, I used to have the longest, hardest nails!  Ever since Taxol, they are soft and flat. They grow fast but they bend and break and snag, just a mess!  I had called my clinical trials nurse complaining of this and she said it was a 'late Taxol effect'...ok but still after a year?  and I still get the numb fingers on the left side (mx side).

I am so happy these days though and feeling better everyday.  I've been exercising and getting back in shape, still having issues with balance, but working on it.  Hang in there girls, cause lemme tell ya, it does get better! 

unklezwifeonty

Thanks for the positive post Kari......

carolynf

Hi ladies,

Just catching up on the posts and it seems that time has flown by.  The nose thing...UGH!  I think it lasted for 2years.  I used saline and the neti pot thingy while going thru chemo and I still think my sinuis are not quite normal and probably never will be back to the norm but they are SOOO much better.  I still carry a large box of tissues in my car due to the nose issue. 

I am also trying to unload the weight gain which is not cooperating.  I haven't been exercising due to my heel.  I am getting my orthodics this Friday and hope to jump on the treadmill after that.

Overall feeling good!

unklezwifeonty

Dear Carolyn,

Good to hear from another veteran. The neti pot is a GREAT idea. I will try it in the next couple of days.

littletower

Hi all,

An update on my decreased LVF function from the Avastin that caused me to get booted off the trial. Finished chemo last Thursday (YEA!!!!!) so had another ECHO Thursday. Unfortunately, it showed no improvement. Going to cardiologist next week, we'll see what he says. Considering everyone else had reversal of CHF after 6-12 weeks off Avastin, it's surprising. I'll let you know what the next step is. Hope you are all staying warm (freezing in NY) and getting (or staying) healthy!

kfinnigan

Congratulations littletower on finishing chemo (major hurdle)!!!  Keep us posted!!

Hugs to all!!

moborn63

congrats littletower. i actually continued the trial arm c/d no problems except for blood pressure issues which is under control. i have 1 experimental drug treatment left and that will be thursday then i am done yeah !!!! i will go in a couple of wks for muga, ekg ect, but no more drugs. hair coming in thick and curley lol, with a little silver, never had curls before so I think I look funny but everyone else thinks its cute LOL. hope all r doing well, will keep you updated.not a good picture LOL took it with my cell phone

here I am when I lost all my hair and was wearing scarves

now with hair growing back

jenn3

Hi, it's been a while since I checked in.  Glad to see everyone is doing well!!!  And - thanks to everyone for words of encouragement to those of us still in treatment.   I just started rads this week, all going as expected.  I am starting to feel much better now that chemo has ended and have started back at work, which has helped bring "normal" back into my life. 

Onty - Yes, my breast tumor was 1.9 cm - 4 nodes (2 micro mets, 1- 3cm, 1- 4cm).  How I didn't feel the lumps under my arms I'll never know, but it is what it is.

unklezwifeonty

Hi all,

Quick update from my side. My nasal and rectal bleedings are much better now. Life is slowly coming back to normal. Still waiting for hair to come back :-(

littletower

Hey Moborn - Yea to hair! I can't wait. I am so sick of these scarves I could hurl (easier to do while on chemo:) I did a bald striptease and posted it on my facebook page, got lots of compliments, but I am sooooo ready to have hair again. Is it just me, or do people love to stare at us baldies wearing scarves? Oh well. MRI and mammogram next Thursday, told Doc I don't want to wait for results, want someone to give me the scoop right then. Hoping and praying for clean test results!

littletower

LVF function update - not good news. My cardiologist says if I haven't seen improvement yet, then it isn''t going to happen. I will have congestive heart failure and be on ace inhibitors for the rest of my life. So much for things clearing up when the Avastin gets out of your system.

unklezwifeonty

Little

Sorry to hear that LVEF is not improving. How bad is it?

littletower

I started out with an LVF of around 50 and it is now down to between 30-35.

kfinnigan

so sorry about the LVF!  that sucks...I'm still sending positive vibes that it will improve!!!!!!!!!!!!!!!

big hugs 

TexasRose

Hi ladies! It's been awhile!

Foobs- I'm way behind but congrats on finishing rads!!

Carolyn- So glad you are feeling good!!!

Moburn- Your hair looks awesome!! Isn't it fun to have some again?!

littletower- Sorry about the LVF. I'll send positive vibes along with Kari that it will improve! You never know!! Congrats on finishing chemo!!

Jenn- How are rads going? Sending you positive thoughts too!!

Onty- glad to hear your nasal and bottom issues are getting better! Great news!!

And Kari- always nice to see your smiling face!!  

I'm doing very well. Working out, eating healthy, and getting my life and my hair back. What more could I ask for?!

Hugs!!

sftfemme65

Looks like things have been quiet here.  I hope you all are well.  I am finishing the reconstruction, just got nips last week.  I still have days that I ache horribly.  Was told that Avastin might be the cause not the taxol.  Interesting. 

Carolyn and Brena how are you both doing???

Teresa

kfinnigan

Teresa, congrats on the recon!!  I will seeing a ps next week.  Curious, where are you achy??? I've been achy in my low back/hip (and have been re-scanned, all clear and normal) and can't find relief.  I've been to physical therapy, chiropractic, massage and acupuncture.  Thanks for your reply.

foobs

Hi Kari

I'm bummed that you're still having some pain.  You've been off Avastin several months, right?  I follow your progress as we're the same Dx.  How is your energy after finishing Avastin?

 I have only 3 more Avastin.  I'm doing pretty well but have ended up with some lingering pains.  My Rad Onc at a follow up appt yesterday said to give myself 6 mos after I totally finish radiation and the last drug (Avastin) for pain to leave, and energy to return.  I hope he's right!   I wonder if the AI's we're on contribute to the pain too?  I've recently had steroid injections in my hands and one shoulder, which helped.  Energy is better but far from where I was.  I'm probably doing too much and get way too tired, but I WANT MY LIFE BACK!

kfinnigan

Hey Foobs!!  its been awhile!!

I swear, I've had this darn low back pain since starting rads & Tamoxifen one year ago!!  My last Avastin was Aug. 6th.  My onc is going to retest my hormone levels in 3 months and then switch me to Arimidex (my last period was one month after starting chemo, so I haven't had one for a year and a half).  I'm wondering when I make the switch if my pain will stay/lessen/increase...hmmm guess I will find out!!

I post daily on the Motivation thread under the Fitness forum.  Great ladies on there, we post our exercise and cheer one another on.  Look us up!  My energy is sooooooo much more than it used to be.  I exercise almost daily and am feeling good.  I don't sleep as well anymore, but I'm used to it now.  I hope your energy gets better, I know it will!! What AI are you on?  Big hugs girlfriend

You had DIEP??????????  how was it???????  did you post on another thread?  I will have to look. 

unklezwifeonty

Kari

Good idea to cheer each other for fitness. I'm just starting to do elliptical.