Clinical Trial E5103

Teresa,

Glad to hear from you, are you all moved in? More on the cruise in a couple of months maybe we will have more takers and I will have more information. Sorry to hear your last shot did not go so well, was anything different? taking any other medications or over the counter drugs?You are correct it is listed as a SE. Try posting on one of the other threads to see if you can get some suggestions as I know other woman are taking Avastin. I hope you feel better soon, keep us posted.

How is everything else going?

Hi Jen B.,

You will find most of the woman on this thread are within your age range and might have given a second thought to joining the trial for different reasons. However, in the end we all joined the trial, again, for different reasons. We are hear to support, listen and give suggestions when needed. I am sorry that you have been diagnosed with BC, especially since it seems you have taken such good care of your health prior to diagnoses. You are not CRAZY about the thought of putting these poisonous drugs into your system to beat another poison, it is ludicrous but don't have any other choice.

You are correct that TN is scary but please make sure you review the source of your information as there is much speculation, bad hipe etc. on Triple Negative BC. What did your doctors tell you about TN and its long-term survival? Some woman on this thread are TN and some are not but have a positive node.

It would help us if you could fill in your stats so they show at the bottom of your postings.

You want to know if we would make the same choice if we had to do it over again; I would without a doubt and I am sure the other woman will chime in very soon to give their response! If you have some time review our prior pages of chat and you will see why we each have made this choice and a little information about us. At anytime a woman can stop participating in the trial and still continue with her

I received the placebo (Arm A) so I did not go on to arm D, Teresa and Carolyn are on Arm D with continuing to receive Avastin. Everyone else in the group are still going through the initial treatment. Did you receive a copy of the Trial for your review in detail?

Again, welcome and keep us posted when you make your decision. Regardless of your choice I wish you lots of success, hugs and a shoulder if you need. This is a great website and you will find much information and support.

sleep well,

Ryjuem,

Very glad to hear your first treatment went well and being tired will most likely be felt during each of chemo, that is one of more common SE. Need to get everyone in the family on board, you will need them and your support group in the near future. Everyone will have emotional issues with your BC and each will deal with them in their own time and way, monitor them. The way you feel and handle is the most important of all. Handling everything we did before diagnosis along with BC does not usually work out so well for the BC woman. Prioritize, delegate, deffer to someone else, communicate and most of all put yourself first until your BC journey is completed.

Glad your taking the healthy route it will help if you can throw in some small exercise regimen.

Make sure you stay away from people who are sick and god think twice before going into a hospital (germ ward.) 

take care and keep us poste,

Desi,

Thinking of your results, please let us know ASAP. Think positive..positive..positive!

little prayer,

Teresa and Carolyn,

There are now 11 of us on this thread and in this trial, this is so wonderful!! We are paving the road for other woman. I wish we could locate those who were entered into the trial as sequence number 1-4, maybe some day they will find us. I was 5, Carolyn 6 and still don't know Teresa's number.

You bring up a good topic, I was peri-menopause last year only getting my period 6 months; Jan, Feb. April, Oct, Nov, Dec. My period still has not returned, but my Onc is pretty comfortable that I will get it back but am not sure what would be an average time frame, will put on my list to ask.. Again probably varies per woman. Yes I have had hot flashes from the start, I was sleeping in the basement in the winter as it was the coldest part of the house (they wouldn't let me turn the heat off). Contributed to no sleep or broken sleep what a mess on top of chemo.

There is a blood test that can be performed to show where your hormonal level is to give you a better idea as to if it will return, not sure of the name or its accuracy. My hot flashes decreased between the end of chemo and the start of rads. Since the start of rads my hot flashes are everyday, INSOMNIA..INSOMNIA... oh, did I say INSOMNIA. I have become a zombie with the lack of sleep (much of the same as with chemo), received a prescription from the rad/onc for Lunesta 2mg.

• Wednesday night I took the pill and was still awake 4hrs later (did yawn) and then took another 2mg went to sleep for 2hrs, up for 1hr then asleep for 2hrs and backup for the day.
• Tonight, well its 4am and I am writing to you ladies. I took 2mg at 10p and was awake at 1am that would give me 3hrs of sleep. So, again, I took another 2mg at 3am and am still waiting for it to at least make me yawn.
• This is the fourth sleep aid prescribed that is not working. I will continue with the Lunesta for 10 days before moving on to the next request.
• I know I read many woman have sleep problems including us on this thread and those about too have problems. I am truly frustrated because I thought I would be sleeping my normal (pre cancer) 6-8hrs of good sleep. I am not sure how to get back to that point, especially on my own without drugs. I eat healthy, definitely exercise and do not nap.

Well I am going back to bed to listen to the dog snore,

Jen B,

Thanks for your suggestion on the GABA, I will definitely give it a try on Monday if the Lunesta doesn't perform by then. What does the acronym GABA stand for?

I searched Neulasta on the web and was able to identify that it is given within 24hrs after a chemo round. I am attaching the link to that information: http://www.neulasta.com/patient/howcanhelp/how_canhelp.jsp#

Maybe your Onc's office made a mistake. I will email you the conference data.

I am all measured up for my boost and then I will be done. I am using Silver Sulfadiazine cream on my open sore under the breast, boy is my breast skin getting dark! My lymph nodes are not being shot but the rays are still up under my armpit.

take care,

ps If the Lunesta doesn't work tonight I will be online

Jen B,

Trascript has been sent to you by email. Hope you had a good walk.

take care, 

ryjeum,

I am so sorry to hear your first round is tough or even unbearable. Help me understand your anti-nausea meds, you are administering them at home? What frequency are you to take them? for how long? The several days following treatment will probably be your worst; nausea, flu-like symptoms, mentally foggy etc. These are normal Se and may be a window of how you will feel after each round, maybe better. Need to get clear understanding of when and how much meds you must take. Talk with the Onc on your next visit and make sure he knows the severity of your SE's, they may need to adjust your anit-meds. Meanwhile it sounds like you are doing the right stuff, its JUST CRAP TO DEAL WITH CHEMO se.

Not sure what your kids to can do to help, just to make sure you get some light food, rest and stay away from anyone who is sick. Tell them you will be emotional, ask for help, and maybe cranky at times. They will need to be understanding and supportive when you ask.

YOU ARE NORMAL, NORMAL, NORMAL. ITS THE CHEMO!!!! Maybe tomorrow will be just a bit better?

Hang in there and keep us posted,

Henson and Erika,

We havn't heard from you ladies in some time, please drop a line so we know how your doing. Hope everything is good or at least tolerable with the chemo.

Erika,

You should be starting Taxol pretty soon, correct?

cheers