Triple negative starting out

Good afternoon all,

Sorry I have been out of the email for awhile.  3 kids and basketball and 8th grade social.  I try to keep my focus on my kids rather than my treatment at times.  Anywho, had my 3rd A/C treatment today...1 more to go before I start Taxol.  Dr says its lighter than this treatment.  Knock on wood, but I have not had it really bad with this treatment.  I carry crackers where ever I go and water. I finally shaved my head on Friday.  Tired of the little hairs falling out.  I am still working full time and also went to guard this past weekend (NHANG).  The guys all shaved their heads in support of me and bc.  Amazing how many of them have been touched by someone w/this awful disease.  I read a book recently called "Nordie's at Noon".  Written by 4 YOUNG women dx w/bc.  It was very inspirational to me.  I cried on and off but there are so many things that it makes you think about that I would recommend it.  They also have a website  www.nordiesatnoon.com .  One of the women was 5 months pregnant at time of diagnosis.  She then went on and had another baby years after. This last shot of Neulasta did not give me leg cramps.  I took ibuprofen 1hr before the shot.  I have also added flaxseed oil to my oatmeal for breakfast.  I have also talked w/my onc about taking L cartinine (sp?) when I start the Taxol. He highly recommended it.  He also said they did a study on it for fatigue...If it helps w/fatigue and neuropathy...GREAT and it doesn't cost big bucks like Neulasta. He said I can also take milk thistle if I like (suppose to help cleanse the liver).

Bobbi,Thanks for the info on avastin. pta, I also am a maineiac!!  GOOOOOOOO Patriots!!

Carolyn

Just finished my 3rd dose of A/c yesterday.  I feel great!!  I am not sure if my body is getting used to these drugs or its the steroids!  Anyways, its the best I felt since starting. My cold is almost gone so that could be another reason why.  1 more to go.  Then vaca to Florida!!  Too much snow here. Husband is ready to go South!  Keeping positive and everyday is a good day

wvgirl: My hair started falling out on day 17th and by day 21 I had decided it was time for a very short haircut!  Makes the drains a lot happier.  I am comfortable going hatless indoors at the office but think it can make customers nervous.  Due to winter, hats are where its at.  Tried a wig but couldn't stand it.  I am happy that the shot didn't affect you like it did me.  I still have a cough from the start of chemo.  It comes and goes, but mostly comes.  i am looking forward to my last A/C on the 28th.  I had an old client stop in my office to drop off a book on Tong Ren by Tom Tam.  Oriental way of healing w/mind.  Dana Farber and Harvard Cancer Center were interested in a pilot program on the way he heals.  I have to read more of the book to see where it will take me. 

I am glad all are doing well and am sending good wishes to all.

Good morning all,

Rough night w/10 12yr old girls here for my daughters bday party.  I made it thru though!! No takers on shaved heads though.  thanks for the welcome Holly.  I am on the opposite coast as you...yes, I am a mainiac.  My onc is John Eneman.  Great guy and very open to my questions/suggestions.  I also consult w/my cousins wife in England who had the same exact dx as myself and she is studying nutritional medicine.  My other cousin in Canada is also into growing organic and using herbal medicines.  I always consult w/my onc for anything.  I did have elevated liver enzymes after the 1st treatment, but started drinking 1oz of Nonni and adding flaxseed oil in the morning and my enzyme had dropped this last time by 42. (onc said it really wasn't that high to begin with but was happy after this last blood work that it was just over).  Maybe positive energy??

Teresa,  Sounds like you and I are on the same plan of attack.  In regards to side effects...I did have to stay in bed for a wicked headache (didn't get up til late morning after taking aleve) which I couldn't decide if it was from the steroids (since it was the weekend and I do chemo on Monday), or the avastin.  I did talk to my onc about it where he told me to either take 1 dexameth on thurs or be prepared on friday to start taking advil for headache.  Well, I started with the later. I take aleve on Friday (maybe 2-1 morning, 1 night).  This last Saturday was much better but I only had a SLIGHT headache.  I took a shower (to open the mucus membranes of my nose) and then took 2 aleves.  I was good most of the day.  I also put a humidifyer next to my bed.  I also use a saline spray for my nose which was running at the beginning but now drys out much. I also have some days that my ears are blocked.  But, this past Tues after my 3rd cycle I felt Great only to get blah on Wed. I find days 4,5 are the worst days.  those days happen to be the weekend which I can stay in bed.  I am going to a support mtg tonight where they have a speaker talking about NEW bc treatment. so I am looking forward as to what he has to say.  Will share.    I've rambled enough.  Hope this helps.  keep the faith and spirits up and be surrounded by positive people because the negatives can really take away a lot from you.  Lots of fun hats help too!

Hi Beth,

I have taken Dexamethodone and have done fine with it.  I just finished my last cycle of A/C w/Avastin.  I start the next phase of Taxol on Feb 11th.  I gather that one comes with its own side effects. The A/C wasn't too bad on me.  I did get blah days with my stomache but besides that it was doable.  I felt blah on Tues (had chemo Monday).  I have felt good today. A little bit of a headache but that is due to sinuis's.  Nose not being good today. Forgot my spray at home.  Hope all are doing well.

Teresa, I had my 4th treatment and think I am getting the real thing on the trial. I have had 1 day of bloody noses. Each side. Morning and afternoon.  Not sure if you have any sort of cough. I have a slight cough.  Eyes are a little teary.  I am hoping I am done w/the neulasta shots!! I really do not want anymore of those. 

Any good information out there for the next phase of doing Taxol?  I started taking Acetyl-l-cartinine which is suppose to help w/neuropathy.  My taste buds haven't changed much. No metallic tasting or anything of that nature.

Keeping the faith for all!

Carolyn

Teresa;  I have had sinuis problems I feel from the 1st dose.  Constant running nose, some blood when I blow, very tender nose.  I have used saline solution and now am putting petro jelly inside of my nose which seems to help the membranes stay moist (my onc recommended it).  Only had 3 nose bleeds so far but they had stopped w/in 15 minutes. I think some of the slight headaches can be attributed to the nose.  I would agree that my voice has changed...definitely different.  Sometimes it sounds like i have a cold and other times rasppy.  This last A/C kinda kicked me. I felt blah (stomache) when they started the infusion. Not sure why.  It hadn't happened before.  I'm starting the second week of no chemo. Next Monday when I start the Taxol I will also be doing Avastin.  The regiment is every 3rd week.  I don't think, but am not sure if I will do avastin at my treatment since it will have been 2 weeks from a/c.   I am heading to Florida on vaca the end of the week and will miss my 2nd taxol. The trial team said it was fine and would add another week onto the end of my treament.  So I will not finish the chemo til the 1st week in May. As long as I can vaca in FL and get out of the cold/snow.  I had my military weekend (this past) and had to get drug tested!! I'm interested in how many positives come up on the prescription side because they do test for steroids! My test may confuse the heck out of them because it was a chemo week and w/all the junk they put in me I probably went over the limit of more drugs than urine!  My eyes have been bothering me quite a bit this last week. Hadn't had that before.  I still have my eyebrows and eyelashes.  Eyelashes have gotten quite thin on the right eye though. Not as full.  Not sure if you have a cough. I have been having a dry and wet cough.  Started taking mucienex and it helps suppress the cough.  I am home today because my youngest is sick and since I worked all weekend I don't mind staying home to get extra rest.  One of the young Airman in my unit talked to me about a tea her uncle (he's an herbalist) makes. Can't remember the name but she says he makes it for a friend of hers who is going thru chemo and it helps him feel better and helps with the fatigue.  She is seeing him this week to get me some and I will let you know what i think or feel.  I drink tea a lot. Tried green, mango, earl grey etc.  Tea helps settle my stomache.  I have gone on long enough.  Stay strong and think positive.  I look at this treatment like you.  I have endured the first regiment of treatment and now am anious to start the next because it means I am closer to the finish line. 

I gather we definitely are doing the same trial.  You will get done w/the A/C part. It went by pretty quickly.  I think the last dose was the hardest.  I was on Christmas vaca when I had the first dose so I had 2 weeks of not having to rush around w/3 kids.  In regards to my labs, I've only had 6 items off and they were barely off.  So I must be eating right and taking the Flaxseed oil and nonni I think have attributed to my labs getting better (my personal point).  I did give up coffee due to the effects on my stomache.  I am still going to my kids basketball games but try to stay away from anyone whose coughing etc.  I did stay home yesterdy w/my youngest who was sick.  We stayed away from each other for most of the day.

I am heading to St Augustine for a few days then off to Orlando so the kids can do Universal.  My 2 youngest have not been able to ride the big rides previously on trips so this time we can all ride together.  We plan on doing Busch Gardens again too.  The rest of the time is relaxation. This is probably our 5th or 6th down to FL.  The kids still get excited but no Disney.  TOOOOO many people during school vaca.

I also just started taking the L-cartinine to help w/the taxol (hopefully the italians and americans were right w/their trials!!) in hopes of staving off neuropathy and fatigue.  I really haven't felt any difference due to starting w/a low dose of 250mg.  I forgot to tell you that sometimes my ears pop, like being on a plan.  It happens once in a blue moon.  My gums are bothering me and I use biotin rinse and toothpaste which does help but they are getting irritated on the upper left side.  Not sure why.  Hopefully it will go away with the Taxol...When do you do your next cycle?  I found that if I drank 80oz's of water the 2 days before, it really helps w/no constipation. I also started eating prunes/apricots and metimucel pills.  I only had a problem the first treatment and then this last treatment i had a little bit of the constipation.  Nothing like the first though!!  I hope you are feeling better and it does get better.  I can tell (maybe not right this momoment).  I look at the treatment as a goal and I am 2 months down and 3 to go (not including the rads). 

I hope you have a wonderful day.  As my Airman inscribed in a photo to me:  Definition of Courage:  Grace under pressure. (Ernest Hemingway).  Isn't it the truth!

wetcoast: I did some research online and came across a trial that was done in Italy and cancer patients.  They took acety-l-cartinine for neuropathy.  I brought this printout w/me to my onc and didn't show him, I usually start out w/new questions on different treatments using natural etc. Anywho, I brought up the l-cartinine and he said yes, for fatigue, I said no, neuropathy. He said US did trial w/it for fatigue that helped cancer patients. So, his answer was go ahead and start taking it.  I did not take it during A/C. I only took B12, flaxseed oil on my oatmeal every morning, and a shot of nonni juice in the AM.  i go on and off w/caltrate and one a day. I have a hard time swallowing the one a days.  I also started taking chronium picolate.   All I know is that my labs are good and I guess what I am doing is keeping my body SOMEWHAT healthy.  I dont' overdose on the vitamins. I also drink min of 80oz of H20 daily and 3 cups of tea.  When I am feeling good I might indulge in a Shipyard brew  or glass of vino.  Most nights its a cup of tea!  I will keep posting on any changes w/tingling of hands/feet on the taxol.  BTW, my lump was exact as yours 1.7cm.