Clinical Trial E5103

debk55 · October 2008

Hi All,

I am off to my first tx tomorrow. Happy Trick or Treat. How long were there for your first one? I think it is going to be a long day we live abour 2 hrs away and I think they said all the iv prep infusions take about 1 hr and the 1/2 for A the 1 1/2 for C the first time with ? Avastin 1 1/2. SO about 5 hrs iv stuff. Dr & lab before another 1hr and 2 hrs drive home. Hopefully the drive will just 1 1/2 each way. Yeserday I ran into construction when I went to my po appt. I am still having to get some drainage pulled off my mast site, any of you have to do that?

Blessing to all and SE free day hopefully, Deb

brena · October 2008

Teresa,

Glad to hear your taking some trips, make sure you celebrate everything and anything you can. If all goes as planned I will be returning from Spain on Nov. 27th and back to work on Dec. 1st. I will be traveling solo on the cruise if someone else would like to share a room I am open.

I would love to share a trip with you, besides the Breast Cancer cruise in April. Have you traveled international, do you have a passport?

I went to the Dr. this morning in reference to the pain in my head and he performed some of his own little tests and then rushed me off for a cat scan next door. Cat scan fine so he repeated some tests, asked some questions and then wanted me admitted to hospital for more test. He was able to see and verify the eye twitching and spells of double vision in the same (right eye). Kind of scared me to see two of him along with feeling like my equilibrium is off. The pressure lasted 4 hours today, got a three hour break and pressure started again. Pressure seems to be increasing in length as each day passes. At least he didn't think I was being a hypo-BC patient, he seemed a little upset I waited 6 weeks to bring it someone's attention. I seem to get into trouble when I try to nurse myself out of medical issues. Will I ever learn? probably not. Anyway, here I sit in the cancer ward at the hospital waiting for someone to poke and probe me!! Again, I set myself up for disappointment....remember my GOAL of NO MORE poking and probing...yea right.

At least they have a touch screen monitor for the internet and tv. I will be here a good part of the night, so I will be bouncing around. I should be going home tomorrow unless they find something wrong and even then will go home. I brought only one change of undies.

take care,

cjw · October 2008

Brena

Good luck with this latest nuisance--I wonder if its related to the avastin-one of the SEs listed was headaches. Hopefully nothing serious. Keep us posted-you've been such a help to all of us--please let us know if we can do anything (have meals orderedin from a distance, whatever) take care

carol

sftfemme65 · October 2008

Brena,

I'm sorry to hear you are in the hospital. I am glad though that they will hopeful find out whats going on and fix it asap!

Oh I definitely love the idea of taking a trip. I have never traveled international, unless you count mexico or canada which I dont. I do have a passport so I'm just itching to use it lol.

Please let us know how you are doing ok.

Teresa

debk55 · October 2008

Brena ,

So sorry you are in the hospital, hopefully you get out today and this will not be any thing serious and they will know how to be that from happening again.

I am off for my first tx today.

You all have a blessed SE free day, Deb:)

brena · November 2008

Ladies

Thanks for you good thoughts and wishes, today was not one of my better days. I have added vomiting to the list of problems, worse head pressure yet which started during the mri process. I had to lay my head on a rest for the hour duration, head pain was the worse. Great news my mri and ct scan came back normal so the neurologist performed a spinal tap this afternoon and we won't know the results for 2-3 days. Not sure where we go from here after my GOOD spinal tap results come back. Not sure when I am going home keep asking but no one has the answer...surprise...surprise.

If my family Dr. hadn't seen what I was feeling and talking about I would swear I was being overreactive, which is not usually my character. I am one who has tendency to let things go to long, working on that.

tired so you guys take care,

brena · November 2008

Teresa,

Have a wonderful trip to california, we will have to make plans to take a trip together. Drop me a line when you get back and we will start brainstorming.

fly safely,

brena · November 2008

Carol,

Thanks for thinking of me, I am the one who received the placebo so no Avastin for me. It seems several months after chemo would be a long time to start having SE, but they are considering everything but my gut feeling is they are not related. I think the docs agree. My gut says we will not figure out what it is and it will just go away on its own or I have to live with it, we will see.

I hope your feeling well and the family is also good,

brena · November 2008

debk55,

Hope you had a smooth day and your first treatment goes without to many SE. Please stop in and let us know how your doing, even if I am in the room with white coats I would like to know how your doing. Please include what SE you receive, if you need suggestion on some of those SE just ask and one of us will chime in and try to help.

You are on your way...take it slow and steady,

debk55 · November 2008

GOOD MORNING

I did have a smooth but long almost 12hours with drive time, day lots of info from the nurse the social worker. They were all really nice. I think my dh had a worst day watching it all happen to me.After I got settled in and after the A in went in with out problems. He got me setup on the lap top and I had my ipod and a goodbook to read, I told him to go to Cabelas It is only 15 -20 mins away and iWAS going to be another 3-4 hours I think that helped him some. He is a sweetheart and will be ther with me if I want but the pain on his face is almost more than I can bear. I hoped that helped him. He is a really quiet guy. :) I love him so much.

I I took emend 1 hour before and they gave aloxi & dex in the iv. I just did not feeling hungry when I know I shloud. I drank lots of water,the ride home I felt ok if I kept my eyes closed.

I will write more when the ativan I took for sleep wers of as i think it is really effecting my typing,sorry BLESSING TO YOU ALL FOR SE FREE DAYS, Deb

Keryl · November 2008

Hi all. just checking in. Yes, I have my 4th A/C this coming week, then on to Taxol. I am at CA pacific med center in SF, and trial is associated with UCSF.

I don't have a good feeling if I am getting Avastin or not. My blood pressure has not changed, but I definitely have bad headaches and drippy sinus, followed by some bloody streaking and sore inside my nose. Is this chemo or avastin - don't know. I think at my last treatment I did not drink enough liquids afterwards. The next day I went into hibernation for almost two days. I felt awful. Wondering what this coming week's session will bring, but will be sure to drink more.

I also have some of my retesting coming up (Echo, and EKG) so hopefully all ok.

Worst is my node disscection area still is very sensitive and its been two months. I have improved range of motion, but my armpit is still tender and lots of back of arm soreness. Thankfully, no edema, but it has made me wary. I expect to have radiation and so wondering if that area will ever be the same. Have a good weekend all.

sftfemme65 · November 2008

Keryl,

I have not had any issues with my blood pressure at all. Sinus dripping and blood sure could be a sign.

I know that node area takes a while to heal, the nerves coming back is kind of painful.

Have a great weekend

sftfemme65 · November 2008

Deb,

I hope your feeling well after your treatment. I loved ativan. Helped me so much expecially during taxol, because of the steriods I could not sleep with out it.

Teresa

PinkVelvet · November 2008

Deb, I'm glad you got your first A/C out of the way. I hope the last few days haven't been too bad. The A/C didn't agree with me at all, at all but you get through it and before you know it, it's over and on to the next step.

Brena - I hope you are doing well and are out of the hospital in good health. Just in case, I am sending you oodles of well wishes and hugs. Keep us posted. My thoughts are with you.

Hugs to everyone,

jen

av2 · November 2008

Brena - Hope you doing good and at home. Good MRI results are fine, get yourself plenty of rest.

Deb - Aloxi works for 5 days! better substitute for zofran. Are you getting nulasta shot next day? Some don't. I finished my 3rd AC and getting 4th on 11/11. My biggest problem is muscle pain and nausea. after second dose, I had headache and tender head during hair loss process. Hope you are dealing well with your first dose.

Harbin - I go to infusion center on Tuesdays and Wednesday for Naulasta. I am now, worried about Taxol and SE's , I wonder if I am going to have same amount of nausea and muscle pain I think you are going to get your last Taxol dose. Do you need to go for rads or no? Please share your Taxol SE's if possible.

av2.

harbin · November 2008

av2,

My last Taxol will be this Thursday. I am glad it's the end. During the Taxol treatment, my SE's are really mimimal compare to AC. For each Taxol, I get Nepogen for 4 days which I give the shoot myself at home to save the trip. I feel cold all the time and my bone is sored like flu symptom, but it's really not that bad. Now, I felt more tired as I am reaching the end of the treatment. The biggest thing is my finger nail got detached from my finger which caused some infection. I did not have nausea during the entire Taxol treatment and still be able to eat food almost as normal. I had lumpectomy and need to do rads after the chemo. I am the person worries a lot, I am now thinking whether I should just do the mastectomy. I know it does not make any difference, but simply for a psychological reason. I am going to see surgeonsand radiologiest this week, then I have to make a decision.

Hang in there, you are almost done with AC. Taxol should be much easier to handle.

Harbin

ekenny315 · November 2008

Deb;

I don't have to physically drive my self to a job, in fact i open my eyes in the morning and my job is standing right in front of me. Ryan 4 & Erik 3. I finished my 16 rounds (4 AC, Avastin clinical trial and 12 taxol ) to be honest it was tough. I felt a lot of fatigue, but mostly towards the end. It is doable but everyone reacts differently. I can recommend that you eat healthy, drink lots of water and exercise at least a little. You'll do great. And i didn't believe it when someone told me......It goes by fast - but it does...

All the best

brena · November 2008

Ladies,

Good evening, very glad to hear from most of you and that everyone is moving in the forward direction. Some days not so easy but we are woman so we will put our heads high and keep going, troopers we are!!

Let me start by catching everyone up on me, still in the hospital but expecting to go home tomorrow one way or another. Have had an MRI, CT, x ray of lower back and all is well, healthy and wise. Docs cannot figure out what is causing my SE's, if I am feeling as good tomorrow as today they will let me go home. I will have a bone scan before leaving just so they can ensure no extra activity in the brain....I could use all I can get. Saw a neurologist and he doesn't feel it is a neurological problem, not sure what the problem but not neurological. Of course being a cancer patient their first thought is cancer to the head, no activity there. They have ruled out the most likely cause, cancer, and now on to the minor league stuff. Not sure what to do or not do to prevent the SEs guess I will figure it out if they recur.

Enough about me.

Teresa,

I hope your having a great time and getting a great tan. Don't forget to drop me a line when you return.

Keryl,

You have been around enough to know not to depend on the SE to determine if your getting Avastin, we are pulling for you for arm B or C and with that how could you go wrong? Your on your way.

talk more when I get home,

Keryl · November 2008

Brena, you are a trooper. With all you have going on you still make it a point to care and weigh in on others. I hope you feel better and get answers very soon. I am thinking of you.

Yep, I know that the SE arent enough to confirm avastin, so why guess, but its compelling to try to piece it together. This is such a puzzle.

sftfemme65 · November 2008

Hi Everyone just a quick note. I'm still in California, spent the day at Sea World. So much fun!

Brena I'm glad they will be springing you soon. Happy to hear they have ruled out the ugly stuff. hang in there.

Erika did you recieve avastin? Did you take the extra 10 treatments?

Have a great week everyone!

Teresa

av2 · November 2008

Hi Harbin,

Thanks for the info on Taxol. My personal email: aliveluv@yahoo.com

If you want to meet you can email me to this.

av2.

PinkVelvet · November 2008

Brena - I'm glad you are getting out of the hospital - hopefully you are home now.

Debk55 - How are you fairing after your treatment? I hope you don't have too much nausea. After my 1st A/C I was very sick so after that treatment took Emend ("Amen for Emend" is what I said). The chemo nurse also gave me Kytril to take on days 4-6 and that helped too. I still didn't feel very good but at least I wasn't throwing up. I was glad when the A/C was over.

I have Taxol tomorrow and will be unblinded. I'm excited to find out - - not getting my hopes up or anything but it will be nice to know what's been going in my body. I'm ready for this to be over and I know it will get here soon. The small SE's are weighing me down.

Is anyone experiencing chemo brain? My brain seems so slow and it's hard to think. I can only do one thing at a time or I get confused. I have to work hard to compensate and I'm writing down a lot of things I don't want to forget.

Jen

debk55 · November 2008

Hi All,

I have been nauseous but, with the emand and compazine no vomiting. I just can not do much or I get nauseuos. Already very tired of sitting and laying around.I have tried to read and knit and clean and I have to just sit back down. I am on day 5 so I hope it gets better.

I have tried to post a couple times and it just disappears and typing is not so much fun so sorry I have not been checking in.

Hope you all are feeling better than me & brenna hope you are home from the hopsital. I am checking in about 1-2 times a day. bleassing to you all, Deb

sftfemme65 · November 2008

Brena,

It's been 3 days since you have posted..........I hope everything is ok. Please just drop us a note ok?

I just got home tonight from California and I'm beat, but in a really good way.

Teresa

PinkVelvet · November 2008

Hi All,

I was unblinded today and am in Arm B. I received the Avastin but will not go on to receive more. I'm very glad I got the Avastin. Thank you Brena, as you were instrumental in helping me decide to sign up for the study. Thank you to everyone on this sight that has shared their experiences and helped me through this really difficult process. I know I have 2 more treatments and it's not "over" yet. But my onc was talking about my port coming out in early Dec. - - THAT makes it feel like it's really going to be over. I am crying just thinking about it.

Brena - I hope you are doing well. I keep thinking about you and sending you healing thoughts.

Deb - hang in there. I'm impressed that you've been able to write back at all. When I had A/C I just couldn't read the posts or make any ones myself. Too many words to read, they got all jumbled in my head and it made the nausea worse.

I hope everyone has a good night and a restful sleep.

Jen

brena · November 2008

Ladies,

Am catching up on your posted threads, two more Dr. appointments today and then will write back this evening.

Am hanging in there and talk tonight.

friends,

brena · November 2008

Kara,

Please stop-in and let us know how your feeling, if my calculations are correct you might have been unblinded this or last week? if so, which arm did you draw? Thinking of you.

laughter is the blessed sword to the enemy,

karakay · November 2008

Hi All,

Thanks for asking about me Brena. It has been a rough week.

I was unblinded this past Tuesday. I was on Arm A. I was very disappointed and it has been a very emotionally draining week. I feel like I invested so much in this trial, and I'm glad that I have contributed to science, but I'm just incredibly upset about it. I would have only received 8 treatments versus that 16 that I went through to be part of this trial, and I didn't get a port, so I have had so many iv sticks I can't even count them. some days it takes multiple sticks to find a good vein. my husband is especially devastated. he cried a lot when the doctor gave us the bad news. i think he is scared. it is so hard to think that after the next two taxol treatments, i will be done and there is nothing else i can do to prevent recurrence (i'm triple negative). it is a very helpless/scary feeling.

on another note, just wanted to share this with everybody.... my doctor thought i was getting the avastin because i was having nose bleeds, which is typically a side effect of avastin. so don't assume you are getting avastin if you encounter nose bleeds.

also, i was hoping some of you veteran girls could give me your opinion on something.... i am thinking about going to thailand with some of my girlfriends later this month, but i would have to leave only 5 days after my last taxol treatment. do you think i could handle a trip like that so soon after chemo ends? thanks for your support and opinions.

kara

brena · November 2008

Kara,

Let me start by saying I am also truly disappointed that you did not receive Avastin, I empathize with you and your husband disappointment. Please allow both of yourself time to absorb the news, clarity will eventually find its way through. Also, remember you have not received less than the normal treatment for Triple Negative BC, you just did not receive the bonus of a potential drug. You, your husband and family have given up much to help defeat your BC. Because your not going on for 10 additional treatments does not mean your BC will return, by far there are several other factors that are positively influential.

Give yourself time to absorb and adjust to the news I would like to then suggest focusing on the tasks that you do have influence and through them you will again gain control of your life and begin to feel more like your in the driver seat.

The entire process of detaching from what had been your lifeline will not be easy, you may continue with fear, doubts and even some anxiety around BC recurrence. YOU WOULD BE NORMAL!! I would like to recommend being diligent with your follow-up visits, discuss your fears with your docs and most of all take it one step/day at a time toward your new normal life.

Without woman like us randomized to Arm A there would be no relevance for Arm B and C in this trial. You have made a positive difference for future woman, please don't cheat yourself of that reward. Many woman go through life and do not come close in contributing what you have thus far. "My hat off to you, your husband and family!"

At the end of my treatment, within two weeks, I took a cruise to Bermuda. I felt fine and was glad I went. I rested when needed and still stayed away from people who appeared to be ill. Watch those germs because you are susceptible to germs and viruses for another few weeks. If you go I would love to hear about your trip upon your return, someday I will get to Thailand.

Please stop in once in a while and give your input, thoughts and experiences to the other new woman.

it has been my pleasure in making history with you,

brena · November 2008

Ladies making a difference for future woman,

The unblind tally is as follows:

Arm A=Brena (#5), Kara

Arm B=Jen, Desi, Erika

Arm C=Carolyn (#6), Teresa (#29), Harbin, Carol

I have only mine, Carolyn and Teresa's randomized #sequence number; therefore, not enough data to speculate on the randomization process.

take care,

Clinical Trial E5103

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