Clinical Trial E5103

Brena,

How are you feeling?  Did they ever figure out what was wrong with you?

Take Care,

Teresa

Hi Brena,

Sorry to hear about your side effects and all the pain. I hope the docs find something to help relieve the pain. It must be hard for you - I hope you have enough help at home to cope with everything. Does your daughter live close by? I'll be praying for your quick recovery from all the SEs.

I start radiation on Nov 11. I will be getting a sleeve for my arm tomorrow, to prevent lymphedema.  Even though I finished chemo 4 weeks ago, some of the side effects are still bothering me - stuffy nose, sinus problem, pain in the legs and ofcourse, lack of sleep. My taste buds aren't back yet - how long does it take for the tongue to start tasting again? Did the radiation affect your taste buds?

Take care of yourself. Hope you feel better soon,

Desi. 

Hi Teresa,

Glad to know you are done with the treatments. Did Avastin affect your sinuses/nose? I had my last avastin on Sept 26th and last Taxol on Oct 10th, but the sinus problem persists. The ENT said this was due to the chemo and will eventually go away. My sinuses are swollen and blood clots restrict my breathing. Very annoying - specially at nights.

Regarding my arm sleeve, the Radiation Oncologist suggested that I get one in order to prevent any swelling in the arm. I have some fluid build up on the right side and back (surgery side). He referred me to a lymphedema therapist. I'll be seeing her twice a week for next three weeks. Women who get radiation to the whole breast and axilla, are at a higher risk of developing lymphedema.

Take care,

Desi. 

Hi there...I just finished my treatment yesterday.  I was one of the ones that recieved the avastin and went on for 10 more.  I personally think this is a great trial and I feel very good about it being very sucessful.  I am glad that I did this trial and given the oppurtunity again, I would jump on it. 

Just one note, I did 12 weekly taxols instead of 4, seems to really help with side effects. 

If you have any questions about the trial feel free to ask anything.

Teresa

Hello Ladies,

I know I have not written in awhile.  I have not really felt up to it.  I am still tired and still do not have that energy that I used to have.  Congratulations Teresa!! on being done w/the avastin.  Did your onc. tell you how long you have to keep the port in til you have your reconstruction?  There should be a protocol on that since my onc said i couldn't have any operations while getting the drug since it thins your blood.  I have #10 a week from tomorrow! I am looking forward to it.

Brena, I am sorry to hear you are still having health issues.  I am still jealous though of you heading across the pond!  Maybe the vacation and some good sangria might be what the Dr ordered.

Desi, Congrats on starting raditation!  One step closer to being done.  The time does go by fast  but that may be due to the fatigue I felt.  I think I slept thru most of the radiation days (that is after treatment).  Make sure you take care of the skin.  Its extremely important.

I had a cranial sacro something massage the other day.  It cleanses your fascia (i think that's how you spell it).  It diffenitely got rid of some of the cobwebs across my mind.  I felt more alert and almost myself (besides the darn sinuis's).  I am thinking of alternating between acupressure and the cranial massage.  I had never heard of it before so when my acupressurest had cancelled my appt Nadine offered this one.  I am very glad I went.  I am still having treatment for my thumb area which is helping.  I am hoping once I finish the trial that my tissue will heal by itself and I won't have to keep going to PT.  Well, its getting late and I need to get ready for some good sleep since tomorrow is Friday and i took off today from work.  I will have a lot to catch up w/tomorrow.  Take care to all you beautiful women.  Remember that there are strengths in numbers!

Carolyn 

Good Morning  Ladies,

I am off for my #2 tx today. I am not quite as anxiuos but still more than I thought I would be   I got my hair cut real short yesterday as it is starting to fall out this is day 14.  I will try to remember to ask what # I am in the trial.  Have any of you had a hoarse voice?? I sound like Rachel Ray all the time, not my usual sound.  

Where an when is the cruise??  

Well need to get some breakfast then the 2 hour car ride to tx.  

Have a great day ladies, Deb

Hi Teresa,

I looked at the dates the other day which I think will be doable.  Did you book your flight w/them also?  I have a girlfriend who is also interested in going so it would be a good thing to get away that time of year!  How's your nose?  I am really tired of having a runny nose for the past (almost) year! 

 Carolyn

Keryl,

You should be done your A/C and started Taxol.  How are you doing?  Hopefully the Taxol is less toxing on the body vs the A/C.  Just think, you are in the 2nd phase of treatment...1 more to go.  At least that was the way i looked at the whole process.  Just wanted to check to see how you are doing.

Carolyn 

Carolyn,

No I didn't book my flight with them but I will check to see if I can get a better deal with them for it before I do anything.  I have already booked my cruise though, my sister is going and maybe 2 others.  It will be so fun, I really hope you can make it.  I am with you on being so sick and tired of this runny nose thing.  My sinus's hurt all the time.  I am hopeful it will get better every day though.  You have the final treatment tomorrow dont you?  Good luck and congrats!

Teresa

Hi Teresa,

I am looking at going on the cruise.  I need to start looking at airline prices.  We used to have a local airline that would fly down (only 20 min from my house).  They are no longer there so I will need to look at Boston or Portland for airfair. Someone told me about a new airline out of Worcester MA that I might ck out.  I would like to get the air before booking the cruise or do them close enough together.  I am definitely leaning towards the cruise though.  How's your nose doing?  Is it getting better?  This Friday is my 10th one and then its celebration! My girlfriend just got back from TX and is treating me to a pedicure on Saturday.  Believe it or not, I have never had a pedicure.  I've always thought about getting one but just never did.  I've had endless manicures for someone w/out long nails (cosmetology school will do this to you!)  I hope things are going well with you.  Got to get back to work.

Carolyn

Hi there.  On this trial if you look at those that are here, the ones that did the trial with neg nodes are triple negative.  The chance of reoccurrance is higher for trip neg bc.  The way I understand the trial you must be considered high risk for reoccurrance or node positive. 

I know that the possible side effects look scarey but I can tell you that they are rare.  Every chemo has some very scarey side effects.  My mother took avastin for 3 years continously with no problem.  Besides sinus issues, I haven't had any problems.  I am triple negative and node positive.  This trial was a blessing for me.  My onc feels it will be a very big deal in the end. 

You have to way your options and what you think will be best for you in the long run.  I wish you luck in your decision.  If you have any questions about the drug please feel free to ask.

Teresa

Hi u2av8r

I was also worried when I saw the paperwork , plus the extra sessions) and thought about not doing itI am SO glad I did (I did have node involvement, but am not triple negative).

1. The extra sessions seemed like a big deal at the time, but in fact were not as the taxol side effects are minimal--its just time consuming but not hard

2. My oncologist (who was one of the original researchers on the herception trial) was EXTREMELY positive on this--thinks it will be standard of care within 3-5 years.

3. I spoke with my brother in law who is a hospital pharmacist--he researched avastin extensively and felt that the side effects would be minimal/tolerable for me and that the upside was tremendous.

All in all, chemo was very manageable (I finished 2 weeks ago, but will continue to get avastin another 10 times). I was able to work, exercise etc.  The AC was the hardest part, but that is over in 4 sessions, plus you get almost 10 days in between of feeling normal. The avastin side effects for me were runny nose, bloody nose in the am (but not bad) and watery eyes (but i think that was more the AC). No heart issues, no blood pressure change, no other SE.

Hope this helps

Carol

Brena,

I hope you are having a wonderful time sipping Sangria and lying on the beach at Playa Del Sol or somewhere,,,,maybe Roda?

C