Clinical Trial E5103

A quick check-in. Day 3 of Taxol #1 and still feeling pretty good. A little tired and some minor bone pain, but not too bad. I slept well last night. The clinical trial nurse said she is going to cut the Benadryl in half next time. I don't need that much. So far, it's way better than AC for me!

Hugs to all!

To all you ladies who are still on A/C:   Taxol is so much easier for most people, not without SE's but better than A/C .  Hang in there!

TEXAS ROSE  I think I'm about a week behind you.  I had my 3rd Taxol yesterday (Friday afternoons) What day are your tx's? 

It sounds like you're going to handle this well and I'm told I'm doing fair too.  I think you're younger than me, I'm almost 57 and a Grandmother .  You look so young and cute! 

So they cut the steroid in half last time and now this time also cut the Benadryl in half and I felt better last night and feel pretty good this morning.  I hate that steroid so much although I know we have to have it for possible reaction.

I've even been back down to my studio this week, part time hours!  It makes me feel so normal! I know I couldn't have worked full time or even taken my classes on A/C.  Don't know how you younger women do all you do!

KFINNIGAN:  I've just latched on to you and your warm positive humor has helped me more than you know.  I'm overjoyed that you're finishing Avastin AUGUST 6!!  I know I'll always remember you as an inspiration that I needed so bad right now.  Did you do Rads?

My sypmtoms if anyone cares--this is morning after Taxol #3

Muscle, joint pain in elbows, hips comes and goes.  I had pretty significant pain 3 afternoons last week.  Took 1/2 a Percoset and napped. Nurse says Tylenol but I told her this was Percoset pain!  Hot tub in the evening (tuned down to 100).  Or warm bath with Epsom salt and BUBBLES.

 My butt issue (hemmorhoids INSIDE ouch) immdediately better with RX steroid suppositories and stool softeners every day.

RBC WBC counts are down, needing more sleep, 2hr nap everyday and sleep all night. but nurse says its to be expected all the way through this.  Try to help it with diet instead of supplements as she thinks they may upset my stomach.  I'm online researching iron rich diets.  I'll post results if I get some good relief.

Fingernails are ugly, sensitive,  feet peeling but not too sore.  Wearing flip flops all the time and gloves when I paint or garden.  Moisturizer is Eucerin Cream in the big jar (Walmart) thick on hands and feet at night with cotton socks and gloves overnight helps.

Mouth sores on and off (using Prevention Oncology rinse from Walgreens 6 times a day, soft soft toothbrush).  My appetite seems normal most days, just tender mouth.

Interesting that my eyes don't feel as "wierd" now.  Still need stronger readers than I used to but they seem to focus better?  One nurse said the Cytoxin and/or steroids seem to effect eyes.  And I could feel my eyes start to 'quiver and blur' with the Cytoxin.  Wierdness, Wierdness.....

 AND I don't know why I chose the name 'foobs'.  Its going to be forever until I get my foobs.....  and I'm told they'll have to be small.  oh well.....

 We're alive and we know the beauty of that like none before!

Kari- I hope it stays easy but I kind of doubt it.

Foobs- You are sweet! Thank you. I am 47 and that picture is about a year old. Actually you are ahead of me. I just had my first Taxol this week. My treatment days are Tuesdays. I go for labs on Monday. Hoping my hemoglobin has come up some. I almost missed the first treatment because it was low. They put me on an iron supplement. I am still feeling pretty good. A little bone pain but very minor so far. My butt issues continue unfortunately. Onc prescribed Proctofoam. It has helped a little. My taste buds are pretty much gone. Not the metallic taste from AC. Just no taste. I had a little temporary neuropathy in my feet with the last two AC treatments but so far none with Taxol. My fingernails are fine.

Brena-  Glad to hear the pain and swelling is decreasing in your radiated breast and your elbow is healing! I spent the day yesterday floating in our pool also. My clinical trial nurse wants me to avoid the sun, but I flat out refused. I am religious about sunscreen, but I told her cancer will take a lot away from me, but it will not take away my summer days in the pool. That is one of my greatest pleasures and I won't give it up. Float! Relax! Enjoy!

Hope it's a beautiful day for all of us!

Mary

My last Taxol is on Thursday 7/30 - can't believe it.  I'm on the arm of the trial where I have to continue Avastin for another 8 mths... but I have to have surgery this year, so I'm not going to be able to continue the trial. 

PORT - I love my port....my surgeon did a fantastic job of inserting it, its tiny and low enough on my chest, its barely visible.  I love her for being so thoughtful in putting it in. Having a port I think makes things a lot easier.

Good luck to all of you - those who are starting - it will be over sooner than you know it.  For those who are nearing the end - you better go out and celebrate.

Hi Brena,

I hope you are feeling better!! The 3day was incredible.  I can't say enough about the stories, the people, the crew and the emotions that were felt.  My team raised $17,800.  The total for Boston was $4 million!!  This was the kick off for the 3day.  So if the rest of the country does as well or more, why haven't we found a cure yet??? Anyways,  my feet were so sore on Monday that I did not go to work.  I had a massage and rested my feet in epsom salt.  I ended up w/4 blisters which is not bad.  There were plenty of stress fractures and people on crutches.  I can say I walked the whole 60 miles and more!  My tent make and me won the tent decorating contest for our area.  She was Lady Bunion and I was Queen Gottablista.  Our tent was Castle Walkalotta.  I am thinking of being a crew member next year.  Last night I had the a BC walk in York for the BC support group which grossed out at $20K.  The money helps w/free massages for cancer patients and other things.  I told the group I could not walk so I just helped w/everything else...

I am cruising in November w/hubby and kids.  Haven't talked to mom about next years BC cruise.  We had originally planned on going but they changed the dates which messed me up! So I am not sure at this time if we will go or not.  My hubby is on his HD in  Colorado.  They are going to Arizona and then who knows...He comes back and I am off to SD for a softball tournament.  Well, time to get back to work.  Sorry I haven't posted much lately but I do read often! 

Take care,

C

Kfinnigan

Hey gal!  Do you remember when your yukky nose issues started?  I'm having them but they didn't start right away.  Of course I'm wondering if I'm on Avastin.

 You asked if I had had a bilat Mx. Not yet.  I've only had a partial mx last April,( to remove the tumor and see how many LN were involved). I'll have right mx end of Oct. and then after healing from rads, I'll have the left prophlactic mx with immediate bilateral DIEP reconstruction, probably September 2010.

PooTik - TODAY IS THE DAY - Last TAXOL!!!!!!!!!!!  YIPPEE!!!!!! so did you stop the Avastin yet??

Hi foobs! (you know because of you I call my prosthesis my foob, and my hubby laughs).  I see your updated info there, good job!  Just wondering why are you doing the bi-lat mx?  Was that recommended or did you want that?  I asked about my right boob, but was told by all that it was like a 1% chance of getting bc in that breast....hmmm...  My nose issues, well, I remember getting a bloody nose pretty much after my first A/C & Avastin.  I used to get bloody noses so randomly all the time, would even have blood on my pillow.  But that stopped during Taxol, and then I would have clotty little things (always on left side) and I still have them, although smaller.  Also, the whole time during chemo my septum hurt (is that the thing between your nostrils??).  It still hurts me at night and while on walks, so my DH bought a humidifier for our bedroom after Taxol ended cause my nose issues were just awful.  It hurts at night and outside and I constantly blow my nose!!!!!!!  all darn day!!!!!!  The humidifier helps a lot and I have saline spray my onc suggested to help too.  I noticed when we were in Hawaii, my nurse never hurt!  It was wonderful, and we noticed a big difference with the humidity, how it helped.  Sorry too much info.

Carolyn, loved your stories!

Hi to everyone else!! 

Hi ryjuem/Joanne!  Congrats on finishing the Avastin! YEAH!!!!!!!!!!!!  I still have lingering Taxol effects as well (last Taxol was 1/15/09).  Fingernails are soft and they flatten as they grow and peel easy, my clinical trial nurse said that was a late Taxol effect.  And I have some numbness in a couple of toes mostly on my left foot...weird

Ok so yes!  I have the joint/muscle pain!  Finally another person complaining of this!!  Extensive neck muscle stiffness, upper back muscle aches and low back/hip pain since Feb. '09.  I wondered if it was from sleeping on only my right side through rads and starting Tamoxifen at the same time????? I've been xrayed and full body scanned again because of this and both reports said degenerative joints and discs.  I've been working with a PT since April for the hip thing and have been referred to Acupuncture which I start next week.  Hope it helps.  My hip has really been hindering my walking/exercising!  

My onc keeps asking me "how long have you had this and when did it start?"...she's just not sure what its from.

So remember some of us were talking about "butt" issues.  Well my onc has scheduled me for a sigmoidoscopy for Sept. 18.  Had to wait for the month after the avastin stops.  So we'll see... 

Brena, must check that out!

A smile is a curve that sets everything straight.
  -Anonymous

I will be thinking of you on Thursday. Nice to know its the last avaitin,  but undersand the feeling of moving on - actually after my taxol ended I felt that way too; then moved on from rads and then whew, totally on my own. Training wheels OFF. Leaves us feeling a little unguarded.  You are GOING TO BE OK; you have had aggressive treatment and a lot of vigilence. I know there are no guarantees, but those don't exist anywhere. It sounds like you are on the best track and it synchs up with our treatment plans.  I like the vision of your bike ride - I don;t bike, but  I swim laps - sometimes I cry, but no one really knows cuz I am swimming.  smile.

now about the butt issues..... I didnt have anywhere near what you describe, BUT, pardon the pun, I did have some soreness there and then a bump that got aggravated and would not go away.I had it checked.  It is finally calm. Take care and stay the course....hang in there.