Clinical Trial E5103

brena · July 2008

Carolyn,

I am so pleased to hear you finished rads and SURVIVED, my true inspiration!! Right behind you lady, if all goes well I should have my last "burnt job" on July 30. My skin under my breast is peeling really bad but don't want to stop now, just two more rads then onto boosts. The Lunesta pills are not working well, go to sleep on my own then when I wake-up I take the Lunesta. It does give me about 3-4hrs of rest added to my own 2hrs of rest=6hrs of broken sleep. I will try to whine through with little sleep and hope after completing rads my hot flashes will decrease. I will talk with one of my doc's to ask about the Effexor for hot flash relief. I think alcohol is a trigger for me, gosh I hope not!

If the chair massager doesn't do the job treat yourself to a real massage because you deserve it. Are you celebrating your completion of rads? if so, how? Kids are off to camp so you have the week to yourself? What is TMJ?

Am thinking of how to celebrate my completion of rads, maybe another trip is in order some place cool?

Ladies,

I hope everyone has a great week, drop a line when you can.

onto bigger and better things,

sftfemme65 · July 2008

Hi guys!

TMJ hu? I wore braces for 2 years, got them off in January due to starting chemo (was worried about mouth sores) a little early. I had TMJ pretty bad and those braces realigned my jaw and no pain any more. My jaws popped all the time.

TMJ is Temporomandibular joint disorder TMJD, TMJ or TMD

I hope you find some relief from your dentish Carolyn.

Teresa

brena · July 2008

Kara & Erika,

Hope your chemo (07/22) round tomorrow goes well and this makes your half way mark for A/C. Please keep in touch.

smooth journey,

brena · July 2008

Desi,

Are you still scheduled to start Taxol on Friday, 07/22? If so, are you ready?

great spirits,

brena · July 2008

Kara,

I forgot to answer two of your questions;

Lost my hair between 2nd and 3rd round of chemo, just shaved it off after much falling out. My kids took turns in shaving my head and we even took some fun photo's. From first chemo treatment hair has a maximum of 20 days before falling out.
Blood draw is from the port the day of treatment, they must know your CBC (complete blood count) before administering the chemo. The port is convenient and eliminate the need for many sticks to find a vein and A/C is harsh on veins.
take care,

S3K5 · July 2008

Hi Ladies,

Just an update - I have had severe nausea/vomitting with this 4th AC tx. Actually it got worse over the week and last friday (18th) I ended up in the ER and then got admitted to the hospital because of v.low counts and vomitting. They put me on fluids and I started feeling better by Sunday night. I came home on Monday, after the wbc went up to 4. Nausea meds work for sometime.

I have a lot of leg pain since the last AC (which was on 7/11/08). It is similar to "Restless leg syndrome" Any one had this before? I have tried Percocet, advil pm, tylenol - nothing works! It is so annoying because I can't sleep even though I am tired!

May be this week will be a better week?!! I hope so... my next Taxol Tx is on 25th July...

Take care,

Desi.

ryjuem · July 2008

Desi - sending lots of Kiss

smiles, hugs, kinds thoughts to you. I've been having trouble sleeping too. I tried some relaxation/guided imagery which helped.

ekenny315 · July 2008

Hi All;

Brena; not sure if i'm the erika your talking to (there are a few on here that spell with a K).

Treatment was a long process i was at the center for 6 and a half hours. This was my fourth AC treatment and my last....on to Taxol for 12 weeks. Feeling kinda fuzzy and nauseous as of now. I know in a couple days i will be feeling better. Can anyone tell me what i may or may not expecting from the taxol?

Going to go and rest now, hope all is well.

Erika

harbin · July 2008

Hi JenB,

I just discoverd this thread. I have currently been threated at Stanford under the trial E5103. In fact, we may have the same onc. since my dr. will be out of town around Aug. too. I had two A/C alread and my 3rd one will be tomorrow (Thur.). You mentioned that you will have your chemo treatment on Thur. We might see each other at the infusion center in Stanford. I am doing well with the first two. I felt yacky for the frist 3-4 days, then quickly recovered. I am able to eat and function normally although I am taking a leave from work for the treatment. No other SE's are observied. (I shaved my hair right before the 2nd treatment, so did not really see the hair falling).

Good luck to you for getting your initial treatment started and hope things go smoothly.

Harbin

harbin · July 2008

Hi Everyone,

I am glad that I discovered this threat and information posted here are very helpful. I am also treated under the Trial E5103 and have two A/C. My 3rd one will be tomorrow. I have a question to those who have been unblinded about their Avastin treatment, If you know for sure that you have had Avastin, what are the SE's you have observed. If there's any, when are those SE's shown, at beginning of the treatment or later? With only two treatments so far, I have not seen any obvious SE's that directly related to Avastin yet.

Harbin

carolynf · July 2008

Hi all,

Harbin, welcome to this thread and am glad you opted to be in this trial along w/everyone else. I can't say for sure of the SE's w/avastin because there have been some that I think (Brena & Teresa will probably agree) that bloody nose was one. After stopping taxol, the bloody nose went away...I was in Arm C when unblinded and choose to go on Arm D. I just had my 4th treatment-6 more to go. Some of the SE's from just the Avastin have been: runny nose, bleeding gums, and itchy hands. I am still fatigued from the standard treatment along w/33 rads.

Brena./Teresa: I celebrated my last rads w/my hubby and friend Pam. She brought over 3 different types of Champagne and a cooler full of brewskis. We ordered pizza's and just sat back and shot the breeze poolside. BTW kids are all back from their camps. My youngest is leaving for CA soon. In regards to rads, I thought the soreness and peeling was over...WRONG. Where I got my boosts has turned red and I had a small blister that opened and is very sore. Today I had quite a few shooting pain in my boob. Not sleeping due to tooth. I went to the dentist and he thinks I have a cracked tooth under my cap (last molar on the bottom right side). He can't tell because you can't see thru a cap. He referred me to another dentist who specializes in root canals, etc. My appt is tomorrow morning. He thinks I will need a root canal. He said it may also need to be pulled. That's the one thing my onc. said not to have done. So, tomorrow is the day and I just want to have the pain go away. I think I have been thru enough this past year. I will keep you posted as to what happens. How are your rads going? Teresa- How are your treatments going? I couldn't imagine moving and going thru all this stuff. Hope all is well.

Carolyn

carolynf · July 2008

Desi,

I got the RLS when I did AC. I couldn't keep my legs from moving which was probably due to the benadryl they gave for pre-treatment. I did not get it at night that I was aware of...I took my lorazapam which made me sleep thru the night during that time. I hope you are doing better since your bout at the hospital. I had an attorney who went thru BC 2x. She told me to drink gatorade (which I don't care for) because it would help keep you hydrated. I started drinking gatorade (watered down) at least 1x a week. The taxol is more tolerable but has its own SE's which are not pretty (my nails still look nasty if I don't polish them). Good luck on your next tx. I'll be rooting for you.

Carolyn

carolynf · July 2008

Erika,

Congrats on getting done the AC! I did not have a lot of SE's w/taxol. I can say I had bloody nose or a runny nose, fatigue, a little joint pain, and nails. Finger nails looked like I was a smoker. They kinda yellowed, brittle, rigids, and tenderness. I did not have any nausea w/taxol which was great. One good thing, my hair started growing back around the 7th or 8th treatment. I don't think it took as long for the treatment like AC did. Just remember that everyone's SE's are not the same. My onc did have me take 2 dexameth. the night before. Hope all goes well w/your first one.

Carolyn

brena · July 2008

Ladies,

In bed at 9:30 with Lunesta (drug not a guy) + beer up at 12am and now is 2:30a. Internet service back on line so I thought it gives an opportunity to catch up with you wonderful ladies.

hope all of you are sleeping better,

brena · July 2008

Carolyn,

I love the way you and your friends celebrate you definitely deserve all that and more, I havn't decided on how I am going to celebrate but will somehow. I am sorry to hear that the tooth is in need of repair and your Onc is correct you do not want the tooth pulled unless absolutely necessary. Please be careful and hope what ever procedure you get it is simple and painless.

Your symptoms of your boob pain is the same as mine and I start the boost tomorrow. Still peeling under the breast, the armpit is starting to peel, shooting pain throughout the breast and the texture of the skin at the top of breast feels like sandpaper that is literally ripping apart. I just want to rip the tit off! Oh, by the way the disability insurance company called today wanting to know the medical reason for my extended absence beyond the actual treatment. I told her to recover from the blister, peeling and shooting pain and offered to show her my breast as proof of necessary absence..........she wants another form completed by the Dr, go figure!

Oh, just to help me sleep when I rollover I get a wonderful shot as a reminder of my daily event. I will survive but why does everything we go through need to have pain associated with the process? As you can tell I get cranky when I don't get sleep and I generally try to stay away from people but know you guys understand.

One of the other ladies in my Onc's office is participating in the trial and she was unblinded this week and she is also in the Placebo, arm A, group as me. Another lady to be unblinded next week and I hope she is in arm B or C as it would be nice to have at least one lady come out with receiving Avastin. Although I do know without Arm A there would be no comparison to Arm B or C.

Your youngest is going to CA to visit family?

talk soon,

brena · July 2008

Harbin,

Welcome to the E5103 group and we are glad you found us for support and information. I hope you and Jen B have the same Onc and you actually get to meet each other, would be great! You are curious about trying to identify if your receiving Avastin, very difficult to determine because Avastin, A/C and Taxol all have similar Se's. You will have to wait until your un-blinding, please let us know when that so we can celebrate with you no matter which arm you have been entered.

Please tell us a little about yourself and you could help us by filling in your stats which will then show at the bottom of your posts.

Again, welcome to the group and may you have a multitude of moral and loving support Smile

brena · July 2008

Teresa,

I talked with my Clinical Trial Nurse and asked her about your Trial Sequence number 50029, she said we drop the first three digits so that means your sequence number is 29.

now I can sleep better (ha..ha)

brena · July 2008

Erika,

Yes I have the correct lady; although, I did notice there are quite a few Erika's lurking on this website. We havn't heard from you in quite a while and was just making sure your doing OK. Congratulations on completing your A/C rounds that is one tough combination.

When is your first Taxol scheduled? How is your hubby and boys? Are you going from Taxol directly to radiation or will you be taking a break in between?

cheers,

brena · July 2008

Desi,

As Carolyn and Teresa will add we all have battle scars from the Taxol, some were received during and after the completion of the drug. I received no symptoms of Neurapathy but had multiple toe and fingernail bed infections, lost nails, nails turned white (dead) etc. Not a pretty picture as Carolyn so expressed, but we dealt with it and are still in recovery. I would take the nail issue over Neurapathy any day. No immediate SE from Taxol, I worked except the day of treatment which was on a Friday.

Is your first or second Taxol scheduled for July 25th? How is your CBC?

hugs,

brena · July 2008

Sure wish someone else was awake I am beginning to feel like I am talking to myself. I will try to go back to bed.

I would say goodnight but it appears everyone is asleep,

jenniferb · July 2008

Harbin:

That is so GREAT that you are at Stanford also! I'm sure Robert Carlson is your onc and Kalapanaa Prabhakar is your trial director like me. Yes? I will be there next Wednesday 6 AM for port surgery and receive my first A/C Thursday Aug 7. Sounds like we may be off by one week for the A/C? Will you be doing your 3rd treatment today? Or the 31st? WE HAVE TO GET TOGETHER! have you attended any of the Stanford support groups? I have not yet but am planning on attending one soon, maybe we could go together? That is really LUCKY that you can take off this time from work. I run my own business and have been already experiencing insomnia (even before I start the chemo!!) due to excess worry about how to hold my business together while I'm going through all this. Where do you live? I live in Aptos, between Capitola and Monterey and it takes me about an hour to drive to Stanford. OK I'm off for a morning swim class. Talk to you later.

JenB

Dx 6/24/2008, IDC, 1.9cm, Stage I, Grade 3, 0 nodes, ER-/PR-, HER2-

carolynf · July 2008

Hi Brena,

Your nights are sounding like mine...Not much sleep these days. As a matter of fact I did not go to work today. This tooth thing has been keeping me wide awake in pain but no more. I saw the endoontic Dr and ended up starting a root canal. I was HAPPY to say the least. He was happy that I didn't want it extracted (couldn't) and boy was I. So I have 1 more appointment to finish up that. Then make an appt for the post, then crown. My boys had their physicals today. My oldest had to get 3 shots and my youngest 1. The youngest went 1st. After my oldest (Remington) got his shots. He sat down next to me and said he was dizzy. I thought he was joking. Then he fell against the wall and started sliding off the chair. I jumped up and caught him in time to see his eyes roll, then he started to shake or it was convulsions. Talk about scared!! My youngest grabbed his head and I was yelling to the nurse. He had passed out COLD. It took another 40 minutes before he was ready to leave. I have never seen anyone drop like he did. They think he was so nervous about the shots and that's why he passed out. He's doing much better tonight. He's been laying low.

As for my boob, it has not been laying low. I thought I was done w/the peeling part and now the boost area is that baby pink and is SORE. Not a pretty picture. I can say I do not feel any sandpaper though. I guess I am looking on the bright side. I hope w/in this next week it will have healed. During these nasty thunderstorms/tornado warnings I had my power to my meter ripped off my house. I did not loose power, but I lost cable, internet and phone. I now have cable/internet back. Phone company won't be here til tomorrow.

My youngest is heading out to CA w/his best friend. They have a house in La Jolla and one in ME. The kids go to school in ME. It's their stepdad who flys back and forth and so does their mom. So, how goes the bike riding? Still getting rides in. I haven't rode my HD for a week or so now. Might take it out for a spin tomorrow. Its suppose to be a nice day. Any big plans for the weekend? Well, I feel tired but are having those shooting pains. I still get jolts in my arms and legs. Not sure if it was the beer or the heat. Its very humid out tonight. Hope your night is better tonight. I am hoping mine is.

Take care,

Carolyn

harbin · July 2008

JenB,

Yes. We are under the same onc. and same trial. I have my 3rd chemo yesterday and it went well. I am slowly recovery from it. It usually take me 3-4 days to feel normal. Luckly, I think my SE's from AC has been very minimal. My next treatment will be Auguest 7, which will be the same day as your first treatment. I will be exactly 3 cycles ahead of you.I know where is Apto. I live in Cupertino which is easy access to Stanford. I do go to the support group BCConnection in some sessions, e.g. Newly diagnose support group on Sat.

I am looking forward to meeting you on August 7. I schedule to have blood draw at 10am, dr appt at 11:00am and chemo at 1:00pm. The chemo usually take about 4 hours. Basically, I will be the center for the entire day. I am Chinese and can be easily identified. I will talk to you more on 8/7.

Harbin

harbin · July 2008

Brena,

Thank you for the warm welcome. I am so glad to find the wonderful group. The information shared here are very helpful. I am also looking forward to meet with JenB soon. I will let you all know when I will be unblinded.

Harbin

ekenny315 · July 2008

Hi there;

Brena;

I have been so sick with this last AC treatment that i don't have any energy. This last one is kicking my butt. I never thought i would here the words come out of my mouth "bring on the Taxol". Many of us say this goes by quickly, i beg to differ. I have 12 more treatments to go then Rads, then double mastectomy and possible oopherectomy (depending on BRCA). & during this time my oldest son will be starting kindergarten in Sep. I guess i'm whining a little sorry (waaaa Patti). I have been up since 4am and it is now 7:20am and my kids will be waking any minute.

maryi · July 2008

I just met with a medical oncologist yesterday and she suggested that I do this clinical trial. So far I havent found any good info on Avastin and what the possible benefits are. I am sure you have all researched it more than I. Can you shed some light on what the possible benefits of Avastin may be - I have already had a bilateral so have no tumor (and hopefully no cancer anywhere).

Thank you. Mary

S3K5 · July 2008

Hi Brena,

I just had my first Taxol on 25th (yesterday) - so far so good! A little nausea. The bone scan report said that the spot on the ribs is 'post surgical changes' - the spot is in the same area as the surgery. So hopefully it is nothing to worry about - just an old injury that is healing.

Regarding the nails, my nails and palm are already partially black and with Taxol it may turn worse!! Well, after what I have gone thru', I will take black nails to anything else! It is definitely bearable.

The RLS is getting slightly better and ativan helps me sleep for about 4 hrs. Then I am up the rest of the night. My CBC is okay - not too great. Hemoglobin is low (around 8.5) which may be the cause for my fatigue all the time.

Hope your sleep pattern improves. Did you try any thing - Ativan, Diazepam?

Sleep well tonight,

Desi.

brena · July 2008

Desi,

So HAPPY to hear your bone scan came back negative for bone cancer, kept waiting to see your reply. Keep a close eye on your toe and fingernails going through and after completing the Taxol, SE crept up fast and got pretty bad but normal for Taxol SE. Teresa, Carolyn and me all experienced nail affects and are still recovering from them. I don't believe any three of us received Neuropathy, Teresa and Carolyn please confirm.

Am glad you found a sleep aid and yes all I COULD AND STILL GET IS 4HRS from any given sleep aid, have now tried four different drugs. I hope you do not wind up with the same sleep problem, definitely not fun. I am doubling my dosage of Lunesta to get 4-6hrs of broken sleep (awake, sleep, awake, sleep) you know the drill. Insomnia is common for woman with BC we just need to find a sleep aid that works...10 months later and I am still looking. I finish rads next Wednesday and will give the sleep pattern two weeks to improve and if not then I will work with my family doctor to determine what is the cause so I can get back on the right sleep track. I am finding myself tired in the afternoon so maybe that is a good sign? Since the start of my boost my hot flashes seem to be diminishing good sign....definitely contributed to my sleepless nights! When I started a new sleep aid it worked for about a week and then stopped working, so you may find you need to change meds at some given point or you can be lucky and have one drug continue to work for you the entire time.

dream of happier times,

brena · July 2008

Mary,

I may stumble through answering your question but here it goes. TNBC there are not many targeted therapies outside of the normal surgery, chemo and rads. Avastin was recently approved by the FDA for advanced BC, not early BC. Avastin has been used successfully in other types of cancer so this drug is not new to the market, with that being said this trial is designed to help determine if Avastin is effective in overall survival in woman with early BC. Avastin has been used, off market, by Oncologists in woman with advanced BC and I know some of them are on this website who would be more informative than me on its effectiveness. I know much research and hope are in Avastin and Platinum drugs helping woman with TNBC.

This trial does not guarantee you will receive Avastin, it is a crapshoot called randomization. There are 11 other woman on this thread who are in this trial who could also provide some input.

Did your Onc provide you with some data or a copy of the trial? The information in the trial packet is very informative and may give specifics, I can e-mail you a copy if you think it might assist in your decision? Type "Avastin" in the search button on this website will give you some prior discussion on the drug.

wishing you serenity,

carolynf · July 2008

Good morning everyone,

Just to back up and answer Desi's question in regards to neuropathy. I did not get neuropathy. Not sure if it was the herbal supp i was taking which was suppose to alleviate that in cancer patients. Study done by the italians. I talked to my onc. about it and he said the supp was in a trial in US and it helped w/fatigue in cancer patients. So he told me that I could take L-cartinine. Not sure if this was what helped or not...But, my nails are starting to look much better. The ridges on my thumbs have almost grown completely out.

This weekly tx of avastin has really made my nose run. Can't go anywhere w/out my handy box of kleenex. I have found that having a glass of wine/beer at night and then taking my lorazapam helps me sleep thru the night. Not sure if having the hubby in San Diego has helped since I have the king bed to myself??? Its a beautiful day here in New England. Hope all is well w/everyone.

Carolyn

Clinical Trial E5103

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