Clinical Trial E5103

Hi all,

Just got unblinded today for E5103. I have been receiving Avastin and am on arm B, which means no more Avastin. Finished 4 cycles on AC, 3 cycles of Taxol and Avastin. Started my last cycle today of Taxol with the avastin, so will be done on March 10th. Will do the follow up EKG and MUGA on the 11th. I am going to take a month off before anything else to go to see the California deserts bloom. I have been waiting so long. I'm sure you know how that is.

My SE's in the last 2 months have been higher blood pressure, skin rashes up my arms and on my back, nerve stuff in my finger tips, (spreading up the arm; feet: toes, heel and ball of the foot, I feel like I am walking with sand in my shoes), vulnerability to colds (caught two month long colds; just clearing the congestion in my lungs with antibiotics this week), irritability, fatigue, mouth soreness, loss of taste (looks good but doesn't taste like I thought, so lost 10 lbs), insomnia due to premed steroids and feet hurting when they touch the sheets.

On the positive side; my hair is still growing in; although blindingly white, I'm no longer as emotionally freaked (hopeful), my nail color is still redder, skin color is yellower, eye lashes and eyebrow hair thin but not completely gone, getting along great with oncologist (it was a struggle), the nurses in infusion are so kind, supportive, and friendly; stopping by to say hi as they know me now ( I'm not just a number), clinical trials nurse is informative and kind.

I have in addition to supplements (Pine St Clinic in Marin, CA), used acupuncture w/herbs, cranial sacral/lymph, and biointegration to help me get through treatment. I meditated using Holosync/sound on occasion. Slept in a really dark room, rested when I got tired, worked two days a week in my business: delegated as much as I could, been supported by a large loving family, and walked my dog as much as I felt up to.  Told others that I was going to PASS or that I was tired, or that I had been a BIT busy when demands were made. Diet: no sugar or dairy products, organic steamed veges not raw, grass fed meat, fish, and organic chicken...foods. 

To deal with loss of appetite, nausea/not eating, my HMO doctor prescribed synthesized THC. Lorazapam (sp?) to sleep.

There, that's it. Just needed to share the protocol that I set for myself. I really had to schedule all the supplements, chinese herbs, protein shakes, glutamine drinks, etc etc. Kept me really busy.

Good night and stay well

Hi ladies

 I hope you're all managing well.  I need HELP again......  I have only 3 more doses of Avastin and my blood pressure is staying up, even on high blood pressure meds.  My Dr says he doesn't know if it resolves after finishing Avastin, as this is a new study.  I'm looking for anyone who has had high BP with Avastin and would like to know if it resolved after completing.

ANY information would be much appreciated.

Hi ladies!

I haven't been here in a very long time, but today is one year since my diagnosis. I've been thinking of everyone here. Trying to stay away and get my life back, but I just couldn't stay away today.

Foobs- I had high blood pressure on Avastin. So much so that they ended up taking me off the drug after 5 doses. I didn't get the last three as the risk just wasn't worth it. My blood pressure is normal now, but I'm still taking a very low dose BP med. They have mentioned that they might take me off of it, but they haven't yet. So, my BP is so good now that I would have to say that it did resolve after being off the drug. My last Avastin was in July I believe. (Isn't it great that I don't exactly remember?!!) I should also say that my BP is GREAT at home. I have marked white coat hypertension, so it's still high when I go to the hospital. And I'm still going monthly because I am also doing the bisphosphonates trial. It's funny how I can take it at home and it's great. Then I go up there and it's really high. Great again when I get home. They know it now and we all just laugh about it. Guess doctors and nurses skeeeeerrrrr me!  

Anyway, hugs to all. A year ago today I really thought I was going to die. I just feel so blessed! You're all in my prayers.

Mary

Got my port removed friday. Also I had my last rad on friday. Life is looking up....

YAY!!! for so many of us sisters.  You all inspire me and make me SMILE!!  and Foobs, your hubs sounds like mine!!  Onty, CONGRATS!!!!!

Hi Mary!!  I called our genetics dept. about testing, they do a phone interview first, and then ran that through their computer and mine came back that my risk of being BRCA positive was very low, so they won't test me.  Keep us posted!!

HUGS to all of you BRAVE chickies!  WE ARE ROCKIN IT!! 

Hey Kari!

I wondered why my onc didn't test me sooner. I have two maternal aunts that both had BC (DCIS and both were ER/PR positive). The clinical trial nurse told me the onc didn't think it was that important because both were diagnosed after age 50 and that is why he didn't feel it was probably an issue. But after all the treatment was done, he did refer me to this doctor to have the testing done. The nurse really pushed for it because I am young. At least by their standards! I'm 48. I don't feel so young somedays!!

Anyway, for a year now I have convinced myself that it probably wasn't genetic since we had different ER/PR status and they were DCIS and I was IDC. So I have been absolutely sure that I will be negative for the mutation. Now, there is a little voice in my head wondering what if I am wrong? I know it means more surgery. The onc already told me that. They'll take off the other breast and my ovaries. Now that it's getting closer, the doubts are starting again. I hate this roller coaster.  

I know I am worrying about it without enough info. But it's hard not too. I guess I'll just have to wait and see what this new doctor says. I'm not very good at waiting.  

Anyway, this is a last piece of the puzzle before I will let myself think about reconstruction.

Kari- I'm sorry it's been an emotional few weeks for you. It never ends with this, does it? Once I deal with the genetics I will let myself think about reconstruction, but to be honest I am leaning towards not having any. I simply don't want any more surgery. The only reconstruction that I would even consider at all is DIEP and I just don't know if I want to do that or not. I haven't even met with the PS yet. I'm waiting for the genetics to even think about it because if I test positive for that, I will have to have my right breast removed also. Right now, only the left is gone. I can't remember if you had bilateral or not. I can say with almost 100% certainty that if I have to remove the right breast also, I will NOT have reconstruction. The only reason I am considering it at all is because I'm currently lopsided, but honestly, I'm an A cup- almost a B- but still small, so it just doesn't matter to me. I have a form I like. I have swim forms. I'm good with the way it is right now. But I reserve the right to change my mind.  

At any rate, I'm in no rush to do anything and I doubt it will be this year if I decide to do it. If I ever do it, it will be during winter months so I don't miss any pool time.

Hugs to you! Just remember...we don't need no stinkin' boobs!!

ok ladies update on me. I finished the trial (I was arm c and D). Everything good. blood pressure still a little high but they are sure it will stablilze now that I am off the Avastin. I am now on the Tamoxifen for the next 5 years.

So I think I am done, everything is great and Wham my doctors get together and decided based on my Family History and that I carry the genetic mutant gene that it would be better for me to go ahead and have a full hystorectomy. So I had the surgery on Feb 24th and I am off both jobs until March 22nd.  Everything came back clear. Still Cancer Free.  So I told my doctors okay you taken everything from my neck to my knees only thing left is my feet and my brain let hope they both stay healthy. LOL

thanks Kfinnigan

CONGRATULATIONS! to all of you who have finished either chemo or rads!

TexasRose: I had 2 aunts w/ER+/PR+ and 2 cousins with the same and my onc did not think I needed genetic testing due to them getting BC after age 50. I was 45 when diagnosed and will turn 48 this year.  I have not freted over not being tested but have had some concerns for my daughter who is only 14.  So far so good.

Foobs: I had my port out in the hospital but not in the OR. It was done w/a local where I kinda went to sleep for a while and woke up and it was gone!  Sore for a while but very relieved to have it out!

Hi Gals!

KATHY  Thanks so much!  It helps so much hearing your BP returned to normal.  I think mine will too.  My oncologist said the Avastin should pretty much be out of my system in about a month.  I only have ONE MORE Avastin on April 21!!  Congratulations to you on getting done!

MARY Thanks for your info on the port removal too.  My surgeon says she'll just give me some local and take it out in the office.  I would much rather have the stuff you got.  But oh well, I'm so eager to get it out! 

I've had lots of  shoulder and wrist pain and ended up getting steroid injections on some of my joints.  I think its a combination of chemo, Avastin and Aromasin. joint i Have any of you had to have injections?  It seems to be affecting my tendons, soft tissue.  But happy it was treatable!

Thanks for the info.  I have been reading past pages but there are a lot of posts and I have not gotten through a tenth of them.  I have talked to a lot of people and I have come to the conclusion to join the study.  I can always withdraw if I can't handle it although I am sure I can.  Looking forward to chatting with some of you.  Have fun on your cruise, my best friend might have another type of cancer and the two of us are going to go on a cruise when this is all over. 

Thanks - I signed the paperwork today.  I will find out more info on Friday and next Wednesday.  I don't have a date as to when I start chemo yet.