Clinical Trial E5103

Hi all. Carolyn, thanks for checking on me. I am done with A/C and yes, onto Taxol (12 weeks) on Friday. My sinuses, hoarse voice and runny nose and fatigue are my intermittent side effects. I do get very tired in the p.m.; usually in bed by 9 but still tend to be restless at night. 

I have anxiety about Taxol - though a few of you say the side effects are less, the falling nails etc. have me a bit freaked out.Oh well, psych up the for next chapter. 

My pit (node) recovery is better and am going to a trainer who is doing some PT with me. I am still so curious about whether I am getting avastin. I must say I am loving my scarves and hats - spent a fortune, but actually dont mind it. I never would have guessed.

u2av8r -I struggled a bit when considering the trial, but I am fairly sturdy. I decided to go for it -- there is certainly enough upside potential and experience with this to date to make it worth it. You can always stop if side effects pop up that have you concerned. You just dont get a chance to revisit the option for the earliest, most aggressive treatment. I think the same thing about radiation - though I am on the cusp, I will opt for it - I just feel like I have to use every arsenal available.

My family is going to Grand Wailea in July - even if I get the xtra avastin, that should work for me. Can't wait! 

thanks.lst taxol down. feeling ok. they put benedryl in my mix and I slept like a baby. I think the techs are poker face for the most but several said my reports all looked good and they think I am getting avastin based on some of the sides. Now, I have been here long enought to know no certainty on that. .

appt. with the radiologist on 12/9  for post chemo radiation consultatation; I am borderline but would prefer to go for it. It will delay my last recontsruction surgery for one year. ugh

I am a little sad that my husband didnt go with me today; while I dont want to force it on him; would also like to reinforce the reality through experience - it is just not another golf game.

Thanks goodness a friend took me, as I conked out in the care.  For those of you out there, let your friends and family help. sometimes I am not good at that.

I hope everyone had a nice Thanksgiving.  I had a lot to give thanks for....being done with chemo, being alive.

Tomorrow I have a busy day.  I have a heart scan, followed by the removal of my port (!) and then meet with onc. to discuss tamoxifen.  I'm very excited to have port removed - I've never really liked it much.

My fingernails are very sore and some have turned a redish/yellowish color.  It feels as though the nails are loose.  Has anyone else had this?  Does this mean that I might lose a nail?

I've had a bad cold for the past 2 1/2 weeks.  My brain wasn't working very well before I caught the cold and now I'm really slow-headed.  I hope it goes away soon.

I hope everyone's doing well.  

Jen 

Hi All,

 Seems like things have been quite to all maybe due to the holidays.  Jen, in regards to the fingernails/toenails.  I did not have issues while going thru chemo except for some tenderness on the nails.  Here I am, just finished the 10th Avastin and I just lost 1/2 of my big toenail!  My last standard chemo treatment was May 5th...Everyone is different.  My nails did lift and become FUNKY but did not fall off.  I lost my baby toenail,. but I really did have much of a toenail to begin with.

My Onc. said that the last of the avastin should be out of my system w/in 6-7 weeks.  I have an EKG/Echo scheduled for this Friday.  I will meet w/him on Monday to discuss results and when I can schedule w/my surgeon to get the port out.  I will be happy with it out.  December 7th will be 1 year since I had my port surgery.  I am still fighting fatigue.  I don't expect things to be like they were but just want the energy back.  Good luck to you girls going thru the radiation.  Make sure you get plenty of rest and take care of the area w/the lotion they give you. Hopefully it will go by fast.  Good night for now!

Carolyn

Hi All,

I just had my 3rd AC/? avastin friday.  ANd I have been SO sleepy since sunday I can hardly stay awake  at all. DH had to drive me back for neulasata shot. 

Have any of you worked thru the taxol's and did they make you really tired?? Or what were you SEs??   I was hoping to go back to work in feb. I wont be done with this trial til about mar 20th.

{{{{{{Teresa}}}}}  Hang in there what pain are you having?  Maybe just some funky URI??  You will be be in my thoughts & prayers.  Deb

Hi Deb,

Congrates on #3! You are almost done the first phase!  I don't think the Taxol was evil like the AC.  I worked thru it but took an hour here and there if needed.  I slept a lot during both AC and Taxol. It did get better w/Taxol though.  SE's were minimal. My nose ran (and is still running!), tender finger/toenails (some folks will loose them but don't fret over something you have no control over), fatigue, some achiness.  I think the rest can give their take on it.  Maybe talking w/your boss about your plan to work but may have to leave if you get tired.  We are all different.  Keep your chin up, you are doing great!

Carolyn 

deb, I finished A/C and will have my 3rd taxol -- this week. I have been working M-W, off on TH and Fridays. My treatment day is usually TH, recovery on Friday and the weekend.

Work is do-able, with some flexibility. I do work at home some - taxol sides arent so great for me. I actually thought A/C was about the same. 

Hi everyone,

I'm hanging in there.  I had my bone scan and CT today.  I bet everything will be just fine.  I just hate the stress of doing tests, you know?  I saw the second PS about reconstruction.  I really liked him, he was very down to earth and was a very positive guy.  If I decide to go through with it, I will be having surgery Feb 9th.  He thinks that will give me plenty of time to heal before the cruise!  Which is very important to me.

I will let you all know when I get the resolutes. 

Carolyn, do you consider your one year the day of diagnoses or surgery?

Teresa

Hi Ladies,

I just finished my 19th Rad treatment today. Some swelling and pain in the radiated area.

Teresa,  how long did your sinus congestion last after stopping Avastin? I finished my Taxol on 10th Oct and Avastin in Sept last week. My sinus congestion (blood clots) hasn't gone away at all - I still use the saline rinse to clear the nasal passages! The ENT was of no help - told me to ride it out, it will eventually get better.
Muscle pain (due to Taxol) isn't getting better either! Legs feel like lead! When will I feel close to 'normal'?

Brena, welcome back. Hope you had a relaxing trip. 

I hope everyone is doing okay, with minimal SE's.  

Take care,

Desi. 

Hello ladies,

I met w/my onc Monday.  He went over my EKG/Echo and everything looked great.  We scheduled w/my surgeon to have my port out on Jan 16th.  He also wants me to have mammo's every 6 months.  I will see him every 3 months for 2-3yrs.  I can't remember which he said and then after that it goes to every 6 months and then 1x a yr.  He said to call if anything changes or I have any wierd pain. He does not do any scans unless there are issues.  I think I just want to move on.  As for the mammo, I found my own lump and the mammo just confirmed it.  My only question is how do you know your pains aren't related to something bad?  I am one to wait til pain is really bad before contacting Dr's.  I have a massage scheduled for tomorrow, and chiro and then to PT.  I think once the port comes out that some of these pains will go away or at least I hope they do!  Sorry to hear about your dad Brena. I need to get some sleep. Will write more later. Enjoy the rest of the week and hope we don't get the storm they're projecting...

Take care,

Carolyn

Keryl,

Yea the sinus thing is by far the worse at least for me but if it keeps this stuff from coming back...it is so worth it.  Lymph massage? Where did you go for that?  Do you have lymphadema?

Teresa

Hi everybody.  I have signed up to be a part of this trial as well.  I'm not triple negative but my oncotype score was 33, which makes me high risk and eligible for the trial.  I'm nervous about the extra drug, especially when I see the sinus issues some of you seem to be having, but it seems most everbody feels it's worth it if it can improve our chances down the line.  I'm starting chemo next Friday, the 19th.

Happy Friday to everybody.  Have a good weekend, I hope you all rest well and breathe easy.:-)

Teresa, I dont have lymphadema but I am trying to do prevention as I feel vurnerable. I did get a sleeve too.  My node dissection seems to be slow healing as I still have  a great deal of sensitivity in arm, arm pit and left side. The therapy  needs to be done by a person certified in lymph massage and MLD (manual lymph drainage) so as not to harm the area and trigger something. It is a light massage, surface flat handed toward the heart to help the fluids move through the lymph system.  She did both arms and chest area and neck. I did a search online for therapists in the area that were certified and then made some phone calls. The John Muir hospital system in this area has a program on this also. Most breast centers have this or can make referrals. My surgeon did recommend this as an option so I thought I would try it.