lynn2593

hello ladies.  bethany i too have on my list to ask the dr why 4 vs 6 tx  i am on the 4 tx schedule and as concerned as you why???  at first i was happy but now that i'm almost hairless anyway i am fearful it won't be enough!!! will we ever be satisfied??   i know our doseages are based on on body  mass that way we should be getting an accurate dose the last time the only thing they changed was my herceptin by 10 mg?  i didn't ask why i figured it was just because of my gi sx i had reported and i did not have them this time.(of course i am fearful they didn't give me any of the meds in my iv's..again never satisfied..ha ha).  so now i have another question they are only checking my wbc, hgb and plts....i have not had a full panel since back when i had my surgery. also i have never had a muga or even an echo i did ask the last time as i thought i wasn't starting herceptin till the course was almost finished but he said he didn't feel it was necessary yet and would check in a couple months hope its not too late then....i have always been healthy but who knows whats lurking  i would never of thought i would be where i am today!!!  another question i've had to add is someone mentioned that you need to start chemo within 12 weeks of your sx/diagnosis but i waited 24 weeks.....at the time my onco said it would not be a problem my son was getting married april 18th and i wanted to be healthy and have full head of hair so i put off my march start then my ps said he could not make the exchange until 2-3 months after i finished chemo since i wasn't too comfortable with the expanders and also wanted somehting behind me i again talked to my onc and hes said again it would be ok so i had my sx in may and had to wait 6 weeks to make sure i healed well before they could start chemo now i'm reading that its not effective unless done in a certain time period  this is all way too confusing so my poor onc won't know what hit him with all my questions next week...i hope this wasn't all for nothing anyone else have any statistics??  

    off that boring subject... i had dvr'd the opening ceremony(we went to a jethro tull/peter frampton concert friday night!!!) started watching it last night...it is fabulous...i love watching all these athletes they are amazing and what a wonderful break from summer tv!!!  was phelps not wonderful last night what a proud mother..and to break his own world record  usa is in a great position.   you young ladies with the young children may be watching your own children someday!!  i hope we continue to update our progress for years to come.......

wishing all you ladies with upcoming tx no se or atleast ones which can be handled easily; will be glad when tx #3 is done aug 21.  stay positive...lynn

hello ladies, day 2 after #2 so far so good i took the claritin 10 mg q 12 hours around the neulesta shot with tylenol and the aches haven't started yet so right now i am feeling myself not sure how long this will last but trying to be optimistic haven't buzzed my hair yet its still coming out all around my fingers but i still have enough noone seems to have noticed yet other then my dh of course, but i am thinking i willwear my wig to work on monday since i haven't been there for 4 days so will see  what happens.  i hope you all continue to feel better take the meds they give i do count on them i even got up during the night to take my zofran and just in case since it was 4 hours to soon i took the compazine before bed.  one day at a time.  michele your children are adorable!  i'm sure they are so much fun.  bethany, you look wonderful  i can only hope that i will look 1/2 that good  when the time comes to buzz. it gives my hope seeing you!  we were just invited last night to dinner and to see les mis tonight so i hope i didn't do the wrong thing but did accept so i hope i can keep all the symptoms at bay.  have a good weekend everyone stay positive  lynn

hello ladies,  bethany thank you for the site on tying scarves; i'm just starting to lose my hair but i guess it'll just keep getting more each day now, i did buy a wig called "all day" they say its light enough to wear to bed i just can't think about not having hair yet; also i got a quilted cap to wear under scarves that give your head some detail so it doesn't appear as bald(both from the tlc site).   gina, so sorry you had such a rough time; hopefully they will be able to give you some meds up front to alleviate the se you experienced; good luck with your blood test tomorrow.  Michele, i am only given the decadron iv before my treatment; no pills to take except the zofran when i come home; the only symptom i got was the flush on my cheeks.  i wish you all luck with your treatments this week.   stay positive.  lynn

hello ladies,  thank you all for your thoughts family is doing well we are a close bunch anyway so we do help each other.

gina so glad your doing better.  valtrex is an antiviral med for some reason i have always been prone to mouth sores for as long as i can remember until i strated on an immune herbal regieme but then my pcp suggested i try the valtrex when i would get an outbreak at the first sign of a tingle or a reddened area in my mouth i would start it and would not end up with any so i have actually been taking one every night(thats a low dose) and have only had one small sore that looked like it would like to start but it disappeared.  i also use the biotene mouth wash.  i'm only on day 11 not getting next tx till july 31 will have blood checked this thursday. 

 i did get the neulesta shot and did take claritin every night for 5 days ended up with a runny nose and sore hips and one rib on the left but all passed in 2 days.   now though i have a rash on my hands and stomach?  not sure if this has anything to do with the tx?  anybody else have this? 

as far as my hair no changes yet except for the actual texture feels more coarse after reading everything i can find  i started washing my hair with nioxin (it's suppose to help with thining hair. i also found in gnc a vitamin specific for hair and nails and i am taking that as well i figure at this point in the game i might as well try anything i can then to have regrets later for not trying something; stacy i am also having the most distress over losing my hair.

thank you all for sharing it is so good to have someone to share with and know that what i'm going through  is doable.    take care everyone  stay positive   lynn

hello ladies, 

     mobay so glad you have your boys back!!! they will help you feel better just their energy will be uplifting but i give you credit with a family and working.  i returned to work today i was able to put in 8 hours but was exhausted when i got home.  take it easy on yourself.

    day 4 have a little stomach problems but dealing ok,i am going with paminfl plan with letting it move through my gi tract thanks;  nose is running like crazy though and my hips hurt?  neulesta shot i guess.

    sorry for the new girls to this site; but i think as a group we are all going to do great!!  we will welcome any input you have or just facts about yourselves.    stay positive   lynn

hello all,  well today has been a good day so far,  i am felling good and have been active all day did get my neulesta shot but no ill effects from that either but i did take a claritn last night and will continue. 

 i already bought a good wig for work and just ordered a sleep wig and one to wear around the house. i also ordered a few sleep caps  from tlc their prices seem good;  the wig i bought at a salon was expensive but my family felt it looked close to my style i am still hanging on that some of the girls have written they never lost all their hair it just thinned and they didn't have to wear a wig i will just take each day as it comes but not going to buzz my head until i'm sure i have no choice my hair is on the shorter side anyway and thick so thining won't be so bad.  i did meet a lady at chemo yesterday who is just getting hercepin now and she stopped tc 3 months ago and her hair was about 1 1/2 inches long and she looked good!!  so another ray of hope.

mobay and paminfl,  enjoy your children they are a gift and will help you get through this i'm so glad everyone is feeling well  keep up the good work  stay positive!!  lynn. 

thank you all for your updates on  how tx is going.  my port was placed yesterday uneventfully and no discomfort today, tomororw i will start tc  hopefully  i will do as well as you girls i have my tote bag packed a couple waters freezing and plenty of food for the next couple of days that seem mild.  my daughters took me out to dinner tonight and then to see sex in the city  we had a fun time;  it was a very thoughtful gesture.  i now think i'm ready for anything.  keep your reports coming they are very helpful.  wish you all well and a speedy recovery.  enjoy your children mine are young adults  ; i don't know where the time has gone .  lynn 

HI,I TOO AM STARTING TCH (TAXOTERE, CARBOPLATIN, AND HERCEPTIN JULY 10TH AND PORT GOES IN JULY 8 (HAD B/L MASTECTOMIES SO NO IV) HERCEPTIN WON'T START UNTIL 3RD ROUND OF TC AND THEN EVERY 3 WEEKS FOR A YEAR.

 HAS ANYONE INVESTIGATED THE ELAST OGEL CAP  I JUST HEARD OF THIS, GOING TO CALL MY CANCER CENTER TOMORROW TO SEE IF THEY CAN OFFER ANY INPUT RATHER THIS HELPS IN REDUCING HAIR LOSS OR NOT. 

 I WILL BE ANXIOUS TO HEAR HOW EVERYONE PROGRESSES AND HOPE WE ALL GET THROUGH THIS QUICKLY AND WITH LOW SE. 

 SORRY THERE ARE SO MANY PEOPLE ON THESE THREADS BUT THEY HAVE BEEN VERY HELPFUL I HAVE MY LISTS OF MEDICINES TO HAVE AVAILABLE AS WELL AS FOODS AND LIQUIDS READY TO GO.

THANK YOU ALL FOR YOUR CONTRIBUTIONS AND USEFUL ADVISE AS WELL AS ENCOURAGEMENT I HOPE I CAN HELP OTHERS.  KEEP IN TOUCH.         LYNN

hello ladies, i had b/l mast: dcis/idc er+pr+her2+3, 0/4Ln b/l 1/08 with immed expanders have gone through the weekly fills(had to wait 1 month to start)but as my ps said he would not be able to finish the surgery until 2-3 months after the chemo was completed i opted to wait and have surgery first then chemo which will start in july i just had my surgery past week and have no problems, no pain and only the limitations that my ps put on me- they are so much more comfortable then the turtle shells. i had silicone placed  actually looking forwared to being able to sleep normal he said in about 6 weeks.  has anyone else had surgery before chemo? i am to receive 4 tx of tc 1 year of h and then oral med.  good luck to you all i know we can all make it..its all in positive thinking..there truly is an end in site, 

ladies, i am a nurse and have heard all the uncalled for remarks made by "friends and family" and then need too help the patient understand where they were coming from and getting her back on track with her own feelings and to block theres.  so that when i was recently diagnosed i only told my immediate family that needed to know since i am the 3rd generation(that included only 8 people) now 3 surgeries later noone at work or in my group of family and friends is aware and my life has gone on smoothly now i'm not sure how i am going to pull off the chemo but i've become a master at deceit and will give it my all i have had very supportive drs who have helped by keeping my name off the or schedule so noone was the wiser.  it is a joy not to have people asking me questions or just staring as i have seen them do in so many cases.  i was even inflated enough to look wonderful in my dress at my daughters wedding, last week.  so everyone keep your chests up and turn a deaf ear to those uncalled for remarks you will be all the stronger for it..