Clinical Trial E5103

Keryl,

I am sooo excited that you are done with treatment.  What a great idea to go on a vacation.  I bet the rest is nice.  I can't think of a better place to be than the ocean.

I hope that your transition to no treatment isn't too rough.  It does feel pretty scary, like tightrope walking without a net (although it's not as if the last 10 months haven't been without fear!), but once you get into the routine of your life without cancer it goes okay.

Tomorrow is the anniversary of my diagnosis.   It seems so long ago, yet just like yesterday.  It's hard not to think about all that's happened in the last year.  One thing that I've learned is that I can survive some pretty bad stuff.  I guess we don't know how strong we are until we are put to the test.

I hope you enjoyed yourself at the beach.  Hang in there,

Jen

Hi Carolyn et al,

 You are so sweet to inquire about me!  I don't know where the time has gone but it has.  We have had several different groups of friends visiting over the past weeks and more due on Tuesday.  Fortunately I have felt up to it and able to do just about normal.  I had my 4th and last AC treatment last Tuesday 31 March.  The Taxol will begin on 22 April after an Echocardiogram on the 20th.  After the last 2 AC treatments I was given the Neulasta shot 24 hours after.  It does the trick as the 4th treatment did not have to be delayed as the WBC count was good.  Hopefully my reaction to Taxol will be about the same as with the AC but one never knows.  I don't look forward to the weekly treatments and also that it will go on into early July.  I should be unblinded in early June but I have pretty much made up my mind that should I have been in the C arm of the study, I would not continue another 6 months with the Avastin.  Just too long and I want to get on with my life.  But of course I'll cross the bridge when I get to it.  My side effects have been minimal.  Some fatigue the first few days after treatment, very little nausea (pills are magic!) and a dry mouth much of the time.  Water helps with lemon but often most liquids don't appeal to me.  Appetite good but varies day to day.  That is about all from me.  Hope you are doing well as all the others.  I do appreciate very much everyone's input and concern.  This website and discussion "room" has been very, very helpful.  Thank you!  Bettylou 

Keryl,

I understand what you are going through, since I went through the same thing - I was in Arm B of the trial. My last Avastin was on Nov 1st, 2008 and my last Taxol was on Nov.11,2008. I did 33 rounds of radiation, which ended on 30th Dec 2008. The sinus problem seems to be persistant - but it is definitely getting better. I use 'Neti-pot' rinse (or any sterile saline rinse) for the nasal passages. It clears the clots. I saw the ENT, but he was of no help - he gave me small vials of sterile 'bactrim' (topical antibiotic), which I used to apply into the nasal passages with a Q-tip. This lessened the burning. Now, I use the nasal rinse only once or twice a day - hopefully it should be better in a month or so.

II don't know if this answer helped you or not - each one is different.

Hope you feel better soon.

Desi.

Thanks Desi. I did exactly that with over the counter polysporin last night. I do have the saline nasal mist but had stopped using it - I will get that back out and use a few times daily, then use  the polysporin stuff each night. I feel like I am permanently preoccupied with my nose!! 

Hi all!

I found it a difficult choice also when it was time to go on with the Avastin.  My onc continued to tell me its a risk benefit for me and that it is really proven in lung cancer, she convinced me as did others I work with, they are my cheerleaders!  I don't want to regret anything I could have done if one day...well you know...but its such a tough decision.  I find that going in every 3 weeks now isn't so bad.  My veins have perked back up like my onc said they would.  They were having a tough time with me in the lab/chemo room each week and I was having great anxiety over it.  I still tense up each trip to the lab/chemo room but they are getting me the first time now, which is awesome and quite a feat!!

I have to say it is soooo nice to read about others with the nose issues!!!!!  OMG! I thought I was the only one dealing with it!  My hubby bought a humidifier right at the end of the Taxol and my gosh, what a difference it makes at night!  I go to bed with my nose hurting and wake up during the night (used to have the grossest nose issues all night, blood on the pillow,etc.)...no more!  My nose still bothers me all day.  I use the Ocean Spray nose spray that my onc said to use a lot, but it still hurts.  She told me I will need to see the ENT at some point, said I may even need surgery at some point!  Great...NOT!  I don't mean to be gross, but hey, we're all in this together.  I developed an anal fissure during chemo that hasn't gone away too and my onc said I may need surgery for that too after the Avastin is over.  You have to wait at least a month for any surgery after Avastin.  

Deb, thanks for the welcome!  My energy level has increased so much!  I am out walking again at least 30 min a day (well most days), stretching daily and just so happy.  I do find that the week of the Avastin I start to get a little weird (anxious) but then I'm fine once I'm there and getting it over with.   

Janet, how often do you go in for the AC? and how many total are you getting?  I wish you gentle healing from your treatments.

Have a wonderful day ladies! 

Hi Jen,

 When did you finish Taxol?  Just wondering how long before some of the side effects go away.  Mine have lessened since Taxol but are still hanging around.  My nurse says could be late Taxol effects or the Avastin.  I was taking Ativan too during chemo but stopped taking it.  I went solo to my last Avastin treatment which was a big hurdle for me to cross!  The nurses were so proud of me and I just came back to work after.  So nice to not feel so bad after going through chemo.  My next Avastin is next week 4/16 on my lunch hour (oh goody)haha...so no Ativan for me.  I'm trying to be so strong!!    I'm glad to hear the fissure cleared up on its own.  That's what my onc is hoping for as well as the nose stuff.  I will think positively!

Janet, kudos to you my dear for round 2 AC down!  For me it was cumulative effects....yuk!  That darn metallic taste is awful but does go away after AC.  I had to mix my water with a certain flavor gatorade just to get it down, and then started ordering lemon in my water wherever I was!  That's all I could drink it seemed.  The Dr. kept ordering me up prescriptions of Magic Mouthwash to help with the mouth stuff (tasted awful to me though).  I also used Biotene and their toothpaste.  That's awesome you could do your ballroom dancing, I am in awe!  My hubby shaved my head just prior to treatment 2 of the AC, it had started coming out and I just couldn't bear to go through all that hair coming out!  We took pictures of the phases of cutting/shaving and then one with my wig on and emailed out to everyone.  It was fun actually.  Its inevitable anyway, might as well laugh about it.

Good luck with your taxes too! 

Janet0527,

I thought I was the only one who pulled on hair to check for signs of hair loss!  It freaked me out when it started coming out in handfuls and I had my DH shave my head.  We both cried.  I wore a wig although it never felt comfortable in it.  I felt like a fake.  Hair started growing back while I was on taxol, although lost my eyebrows/lashes after a month into taxol.

Here's to a successful #2 AC!  Hang in there,

Jen 

BerkeleyKim, hey do you live in Berkeley?  

I too was pretty tired through Taxol, my red counts were down and I was pretty anemic through it.  They even gave me 2 iron infusions, which made me feel so sick to my stomach.  Then right after #6 Taxol, I got a fever and that delayed #7.  After that I did better.  I was crying a lot during that time.  It DOES get better.  Also, as the unblinding gets nearer you find yourself thinking about it a lot!  It is an emotional mess, at least it was for me.  All that anticipation of am I getting the hard stuff, what if I am, what if I'm not...will I go on, etc.  Its such a mind game as well as physical.

Also ended up on Atenolol to slow my heart beat down, it was racing all the time (once I started Taxol)...my onc said she didn't think it was from the Taxol, but I knew it was and quit taking it after ending Taxol and the heart rate is back to normal.  Go figure...it seemed I always had some side effect that they told me couldn't be from chemo...yeah sure...

My feet, especially my left foot, ball of foot and toes really have that numb feeling after a work day and especially after a walk.  Left hand is worse than right hand in feeling kinda numb (that's the mastectomy, lymph node removal side).  But I can type and use my hands no problem, just that weird feeling.

I asked my clinical trials nurse about the Zometa trial, and she said I don't qualify because you have to start it at a certain time and I'm doing the Avastin so I'm out of that one.  Wonder is it only available through a trial?

My onc said your hair will grow back while on Taxol and mine did, I was soooo excited!  Started coming in Dec. and I finished Taxol 1/15.  Still wearing the wig to work, but I hate it!  I will ditch it soon.  Eyebrows just came back in last week and eyelashed are finally halfway grown but not as full, but they are coming back!  

I find strength from all of you sisters out there!  Make it a great day 

Hugs and gentle healing to all. 

Kari-Thanks for the info. I've been telling myself that I don't want to go on if I'm in C, but that might just be to ease my disappointment if I'm not. You're right--it's a mind game. I was really down at my chemo yesterday, to the point of telling my onc that my goal is to make it to my daughter's HS grad in 3 years. He perked up when I said it was my short-term goal. But who knows!  I think that trial is part of a larger mind game that is going to last me for awhile. And I'm in Berkeley. We often drive by Lincoln on our way up to Tahoe. Hope you're enjoying a rain free day!

I spoke with my trial director about the Zometa. They just started the bisphosponates trial at my center. I spoke briefly with my onc. about doing Zometa, and he already  had it in his notes to research what other oncs are doing. I've seen elsewhere on this site that women are getting it for potential osteoporosis, but what is being found is that it might reduce chance of recurrence by 30%.

Janet-my hair started right after AC #2 as well. I just pulled out handfulls til I could get no more, sitting outside in the sun. I was hoping it would last 2 more days so I could go to a wedding (didn't have my wig yet, or any good hair cover) .I never did shave it all, so I have a few long hairs (which I liked because they came out from under my beanie), but now I'm getting some fuzz so I'll probably be cutting them back. Glad you're feeling well.  I used baking soda rinse for mouth troubles--several times a day, plus the biotin. Would also rinse with just plain yogurt.

Have a great weekend all.

Janet0527, how is the hair?  Will you keep what's left or shave it?  We shaved mine and took photos, it was empowering.  Today is my first day at work without my wig.  Now that's empowering too!  Another milestone for me...Also, did you get your taxes done?

Berkeley Kim, I grew up in the South Bay, Sunnyvale and my hubby works down there at Lockheed still...home on Thurs. I just love Lake Tahoe!  And yes, enjoyed the rain free weekend! 

Brena, I am over the metallic taste and my mouth is slowly returning to normal.  Still get a sore every so often and part of my tongue still has the burnt feeling, but oh so much better!  Where are you cruising to?  That's awesome!

Hi Brena,

I should be packing since time is just flying by.  I am also on USAirways but arrive at 2:57pm.  Hopefully will be able to enjoy some sun!  The room is under my name but will leave a message at the front desk for you.  My husband is working on a family trip to London, Ireland and Scotland for June..One more day of work.  See you soon.

C 

I just found this thread--I started chemo on Feb. 13 and I don't think I'm receiving the Avastin.  I've been hoping for some Avastin SEs, but after reading these posts, I'm not optimistic.

Brendafromflorida:  My oncologist told me to use 2 parts baking soda and 1 part salt for the mouthwash.  I just put it in a plastic container and when I'm ready to use it, put about 1 tsp. in a little warm water (about 1/2 cup or so) and swish away.  I use it 4 times a day--has worked great.  Helen