May 2010 Chemo

Westiemom - can you go out to a park or a picnic?  Somewhere not crowded.  I just wash my hands like crazy, hand-sanitize... and I NEVER put my hands near my face. 

Day - I'm sorry you are having such a tough time.  I hope the pain gets better!  I said goodbye to my taste buds... will be sooo happy when they return.  Not tasting and pretty much feeling out of whack is getting dull.  But, everyday that passes is one more day down! 

Spininfool - love the picture!!  Awesome story of DH and girls helping with a mohawk.  I've told my boys they can do mine when the time comes, which is going to be soon.  We're on vacation, and I'm glad to be clogging up the hotel tub drain and not mine, because I am losing lotsa hair right now!!!   

Sacphotomom - I have heard from others that ginger tea is good too - I'll have to get some when we get home!  Glad it is helping. 

njbhwgirl - Ahhh, enjoy your cocktail!!  I feel like I have a hangover all the time... I wish having a drink would have a double-negative effect, and actually make me feel good, but I don't think it works that way... Boo!!  Enjoy every minute of your good week!

My stomach is so bloated ALL the time, it's just uncomfortable.  Nothing I am taking helps with it.  Any ideas?  I've tried pepcid and some nausea meds.  Onc gave me a script for nexium; think that will help?  My headaches got better when we realized they were coming from the zofran, so we cut that pill out and the headaches have gotten better.  On a lighter note - we're having a good time - took the kids to T-Rex in downtown disney for lunch, and enjoyed a caramel peanut apple from the candy store.  My youngest got to build a dinosaur and he was so excited (my goodness, 3 is just such a great age!!).  Tomorrow is SeaWorld.  It's really hot - but I have sunscreen, water, an umbrella, and we'll stop in the AC buildings often!  We head to Kennedy Space Center Wednesday, then home for Thursday infusion.  After my taxol and herceptin, we'll do AC dose dense... my onc didn't care if we did it every 3 or every 2, so DD gets it done quicker, and I think the research may lead toward the DD being a bit more effective, so couldn't hurt.  

HUGS to everyone - and here's hoping for a SE free week!!!!!!!!!!!!!!!!!!!!!!!!!! 

OK the pain after Neulasta was the worse for me  the nurses told me to take Tylenol NO Advil!   I ended up on the norco, 2 of them,the surgeon gave me because I couldn't stand th pain any more.. I had horrible pain in the neck...when I went to my onc I told her the Tylenol did nothing she told me to take the Advil...works better....so Day definitely ask about it..she said I could take it for the 48 hours after the shot.,.and then I took it again when it kicked in when my white blood went down. and I got the pain in the spine  kick it right out....

leanna 9   I am on dose dense AC  went OK til the 2nd treatment when I felt I never really recovered  before 3rd treatment  ..this 3rd one is not so bad tired, no tastes, but not really feeling so bad this time..day 5 today and still tired but not shaky or anything..my last AC is on the 16th then I start Taxotere for 4 doses 3 weeks apart...

ok it went from being so darn cold to hot! hot! hot!..I have the AC on so low my DH and son are wearing sweaters...loving the feel of the AC on my head...lol    good night all 

Day: When I had my pain from the Neulasta shot it was in my hips and tailbone too.  Then it went up my spine.  It only lasted a day.  I took a pain killer but I didn't have enough food in my stomach and then got sick.  It did help the pain though.  My onoc gave me a steriod taper to help with the pain instead of a pain killer.  Maybe you can check with the ono when you go.

Irishtess:  I read you live in Carlisle. I grew up in Mechanicsburg and now live in Reading.

Leanna9:  I am glad you are having a great time in Disney.  Enjoy the Space Center.  One place we have never been.  Would love to go some day.  Be careful at Sea World.  Stay hydrated and sun screened!! 

Day: I am so sorry you are having such a tough time with all your treatments.  My ono told me that I could take Advil for a day or two if the pain got too bad.  He said the anti inflamatory works better. 

What a weekend I had.  Our local relay for life event was this weekend.  The wonderful people I work with put a team in for me.  I work at a preschool so my boss sent flyers out to all the parents and had fund raisers since March about the upcoming event.  I was so blown away.  At the relay each team is suppose to have someone walking on the track for 24 hours.  I had parents come out at 3 in the morning to walk.  We had every hour covered.  It was so emotional to see all the people who came out to support me.  Everytime I think aobut it I still cry.  On top of the relay this weekend I also had my county track meet.  When I was getting ready to give my pep talk to my kids the CYO president (I coach a catholic youth organization) said they had a presentation for me.  He had bought all the kids t-shirts:  Front: St. Catharine's Track Team  Back:  We're Behind Coach Cronan (with a pink ribbon between the we're behind)  I was so blown away.  To top everything off the kids ended up winning the County Meet!  It was such an emotional but wonderful weekend. 

Hope everyone has a great week.

Good luck to everyone who has treatment this week!

Well it was a long weekend!!! I'm going to blame it on the hormones but all I did was cry all weekend and that is definitely NOT me! My hair was falling out like crazy so I think that played a role too. I actually felt a little better after I had it shaved - less trauma I guess. Now it all seems kind of real though. My DH & kids have been encouraging - telling me I look like GI Jane and that they think it looks good enough that I can go out with nothing on my head   I am going to the Look Good Feel Better class tomorrow so I'm looking forward to that.

Snipinfool - Love the mohawk!

Redbarb - Sounds like you had a great weekend full of love & support!

Packjen - Keep us posted on the mystery.

Jen: So sorry to hear about your visit to the ER.  It does sound like the neupogen to me, but what do I know.  I hope they figure this mystery out real soon and you are feeling better soon.

Snipinfool:  I love the Mohawk!

Summer38:  I remember feeling the same way about my hair, but once you make the decision to take control of the one thing in all this that we can control and shave it off, it does make you feel a litttle better.  It still sucks though.  I have to tell you though that I have gotten more compliments on my new hair than when I had longer hair.  I don't know if it;s the sympthany comments or if they really feel that way.  I can tell you this that once my hair grows back it will never be long again.  It is so easy to throw a baseball hat on and leave instead of having to do my hair.  When I had my long hair I couldn't wear a hat because my hair was so thick.  I hope you start to feel better and just remember that the More POSITIVE you stay the better you will feel.  Let me know how the Look Better Feel Good program goes,  I am going to one on June 14.  Are you going with someone or by yourself?

Cleob: I am sorry they had to skip your treatment.  I'm glad you were able to get away and relax for alittle bit.  I hope your treatment goes well on Friday.

Love you all! 

I had the appointment with the new oncologist today. She seems to be an absolutely wonderful lady, very patient and taking great care that the patient understands everything, and paying a lot of attention to their needs. She explained to me some points of my treatment that nobody did before - like why I have to get the ALND done, because of the met in the SLN, there is a possibility that there is metastasis in other axillary lymph nodes that might not get completely blasted by the chemo. She knows very well my BS, Dr. Dooley, and she assured me that he always does the best to take out the minimum amount of nodes to reduce the risk of LE while at the same time he takes enough to decrease the risk of recurrence. She explained to me that if I had had IDC only, then probably ALND wouldn't have been done, but because I had both IDC and ILC and the Ki-67 of the ILC is slightly higher than the one of the IDC, thus presenting greater risk of recurrence (and if it comes back the chances of mets in other parts of the body are very high) - anyway, to make long story short, that is why I have to have ALND. I am sorry if I sound a little bit confusing but I took a Percocet and for the first time in a week I am pain free. It was soooo hard to get everywhere today, imagine a miscarriage pain combined with broken tailbone pain, and see me practically waddling all over the place. The friend who took me to the appointment was actually making fun because I was walking fast, much faster than him (probably I looked like a penguin) and I told him, I am in pain anyway when I walk, not matter if I walk fast or slow, so why not walk faster and be in pain a shorter time? lol

Anyway, she prescribed me Percocet for the pain, Ambien to be able to sleep (and told me to make sure and call if it doesn't work) . She said I don't have thrush, just a mouth-burn from the chemo, and nothing really helps curing it, just a couple more days and it will go away. She said I did very good rinsing with hidrogen peroxide and Biotene and using the benadryl/maalox stuff - that was what she was going to tell me to do, ha! It is better anyway,after the dr. visit, we dropped my prescriptions and went to lunch to Golden palace, and I COULD TASTE THE FOOD. Ah, it was sooooooo good!

Anyway, I think I will be sleeping on and off for a few days now, got pain killers, got sleeping pills, what do I need more?

I hope everybody's day is good and you don't have too many problems. I'll try and write more later, right now I feel I have a high probably from the Percocet and it makes it hard to focus.

Day I thought about you today cause I knew you had an appt with your onc. Glad you like the new doctor and I'm so glad you're feeling better. I take ambien and it helps me and I don't wake up feeling hungover. Have a great evening.

Day-  I am happy to hear your appt with your new onc. went well.  She sounds like a good match for you and will help get you where you need to be.  Sleep tight and we will be here for you when you wake up.

 Merry

Does anyone know how I can take a picture from facebook and use as my picture on this site?  If you do can you please let me know.  Thanks.

Hi everyone,  Had my 2nd a/c on thursday(June 3rd).  Talked with my onc and they did a Zofran drip prior to the chemo and no acute nausea this time!!!  My energy has been really, really low for  a few days, too tired to read or write to you all.  So I am catching up today.  Neulasta hurt my tailbone on the 8th day last time, but no one seemed to think it was the cause.  Onc said  the only pain from it would be  in during first 48 hours.  But I had to take percocet for 24 hours to just be able to move.   Anyway, my bf  shaved my head on saturday.  It was easier than the strands of hair falling constantly on everything.  I am still adjusting, but agree that it is great to scrub my scalp and throw on a scarf.  I hate the indigestion and ongoing nausea that seems to happen any time I eat or drink.  I am still walking and doing yoga, and trying to keep a positive mind set.  The hardest for me is knowing this is the beginning of treatment, and I have 2 more a/c and 12 weekly taxol. One day at a time, I know. It is wonderful to be a part of this group.  Having  the support is wonderful,

Hi Ladies - I am just back from a busy weekend here in NJ.  We had Relay for Life in our town this weekend also.  About 5 weeks ago, I put together a team to walk and we set a goal of raising $2500.  I am so excited, I was just looking on line and my team exceeded our goal and as of this morning raised $4116.    I had 38 people join my team and all of them came and walked some part of the the event.  The goal is to have someone from your team walking at all times.   I realize at times like this how truly blessed I am to have such wonderful family and friends to support me.  I had my 3rd tx of AC on Thursday so I wasn't sure how much I would be able to walk, but I really surprised myself.  I took a lot of breaks, but managed to walk on and off until Midnight.  My dh and his friends all took the night shift.    We followed this up on Sunday with my 9 year old dd having 3 softball games in a town 1 hour away and my ds having a soccer game.  I think keeping busy is helping me to keep going, days like today when I have down time, I seem to feel worse.  Maybe it is just in my mind!

I am now at day 6 after tx 3 and I am just starting to get the mouth sores again...ugh.   I have been using Biotene toothpaste and mouthwash and was hoping that would help me this time but a little while ago I started to feel them coming.   I too have been having a sour type stomach since the tx and even water taste terrible.   I am taking probiotics, nexium, antigass meds and reglan for my stomach but nothing really seems to be helping the bloating, gassiness and just general yucky belly feeling.   I did try the clariten suggestion and WOW did that help, I had very minimal amounts of achiness this time.  So thanks for the suggestion.

I think of you all often!  You are such a great support system.

Went to the Look Good Feel Better program this afternoon - it was great!!!! I happened to be the only participant so I had three lovely women pampering me and making me look beautiful! I came home with a bag full of great cosmetics and lotions. It really is a great program and these volunteers were so helpful. I highly recommend that you all look for it in your area and go if you haven't already.

In my area, the only date for the program during the chemo was June 3rd. I was two days after the 2nd treatment and one day after the Neulasta, and being a zombie. Sigh.

MNLinda:  I did it!  This picture was taken by one of my preschool parents at the relay for life.   You can;t see the words on the shirt, they say Fight Like a Girl.  A hugh success at the relay!