Chemo June 2010

Hi Carol,

 My onc took the same approach as your doc #2 -- no Neulasta shot unless my counts dropped too low. 

 My counts did indeed drop to low. This led to cellulitis in my lumpectomy breast that wouldn't clear with 3 courses of oral antibiotics. After that, I was referred to an infectious disease specialist, and was started on home IV antibiotics. At some point, I picked up a klebseilla infection in my port (probably from all the extra port accesses neccesitated by the IV antibiotics). I spent 5 nights in the hospital and had to have my port removed/a picc line inserted at that point.

Three days later, I was readmitted to the hospital for six days, this time with lung inflitrates. At that point, it was decided that despite my triple negative status, further chemo was too dangerous.  

I may be an exception to the usual rule, but I do feel that all my problems likely would have been avoided if only I had been given Neulasta after the first chemo treatment. I did have Neulasta after treatments #2 and #3, and my counts never again dropped dangerously, but at that point, the damage was done.

I had the same chemo regime that has been prescribed for you. Just my opinion, but if your insurance will cover Neulasta, I would take the shot. Take Clartin and Advil for 4-5 days, I did and had no bone pain to speak of. Even if I had experienced bone pain, it would have been a heck of a lot better that eleven nights in the hospital, emergency surgery, and all the other testing that went along with it.

My .02,

Kaycee

P.S. Waving to all my June sisters! I am now 6 weeks PFC, and I have sprouts on my head. They aren't very long sprouts, but I was sure happy to see them. I hope many of you are sprouting, too! :-)

another bilateral with cancer on one side  (already suspicious on the other - but it was negative)    I did not want more mammograms,  more biopsies etc.  in my future.    I also thought I'd feel more balanced - cannot imagine having one real / one implant - although like everything else, that's a personal decision.

Hi All-  Busy day for me.  I had radiation simulation.  They put expanding foam in a plastic bag and lay you down on top of it.  It warms and expands and gives you a molded pillow for you to lay in.  They took regular photos of my face and boob as well as marking and measuring my chest and taking pics with an xray machine.  Then, I got a six tattoo marks which I think is sort of ironic since tattoos is one of the only things I would ever forbid my children to do while living with me (not that they ever asked). I also got a very quick cat scan.  I saw the rads oncologist and the rads nurse and about three diffrent techs.  I will start rads Oct 11 which will be a long visit.  Then, I will go at 8 am five days a week until Nov.12.  The rads people gave me a "goody bag" with a robe I am to wear over my gown and then keep.  They listed creams to use and I forget what they are right now.  I'll list them when I find the paper.  I know they say no creams or deoderant before rads and Tom's of Main deoderant after.  No anit oxident vitamins but a multi vit and my high dose D are OK.  Otherwise no nude sun bathing Aw shucks!

I also made arrangements to do my medical oncology at the same place as rads.  I have had some unhappy experiences with my medical Onc where I did chemo.I wanted to change once chemo was done.  So I made the contacts to have my records transferred.   This place will also flush my port every 6 to 8 weeks.

I am starting tamoxifen on October 1st.  I have read a little of the other threads on Tamoxifen and think  that the side effects are really different for each person and they don't always know what problems are caused by tamoifen and what are just aging problems.

I am having lingering joint pain from Taxol which I am most aware of when I get into bed at night. My knees and ankles ache.  My fingers and feet still tingle and are a little numb. 

Now I need to make some decisions about returning to work!

I hope everyone is Ok.  I meant to send people personal posts but my mind is all over the place today.

Love Joan

Congratulations to all my sisters who are finishing up your chemo!  Way to go!!!  I realized that when I have my treatment on Thurs this week I will only have (6) more left.  I will be half way done the Taxol.  Party time!!!

I did have a bizarre experience today when I saw my BS.  I asked him for the rad onc referral and his first response was "you don't have to do radiation if you don't want to - you only had 3 lymph nodes that were malignant".  I stopped him and handed him my final pathology report that clearly shows (4) malignant nodes as well as the closest tumor being .5mm from my chest wall.  He seemed confused and looked over my file again.  He then asked me where I was staged?  Hello!!!!  You were the surgeon!  Anyway, he did give me the referral and the rad onc already set up the consult for Oct 1st.  When I talked with their office I was told that they were sure I would need radiation since I am only 47, I was definitely stage IIIa and I definitely had 4 lymph nodes and 20 tumors in the right breast alone.  They assured me not to panic.  Of course, I am not panicked because I would get a second opinion if they didn't recommend radiation but geez!  I am telling you - you have to be your own health advocate and hang on to every report you can get your hands on because somedays it's up to you to read them! 

Anyway,  tomorrow is my annual GYN appointment.  Seems funny to be going there but I figure I may as well have all the plumbing checked. 

Congratulations to all who've completed chemo and to those who are making it through another tx this week. It's nice to see that light at the end of the tunnel.

Since finishing chemo I've noticed that the nosebleeds have stopped, my nails stripes are more noticeable and I'm very, very tired. My white counts are back in the normal range, after being sky-high from the steroids and Neulasta, so I've gotten a little sniffle, too. Am trying to avoid any illness because I want to get a flu shot when I go for Herceptin in two weeks.

I had first rads tx today. Got 5 more little tattoo dots, too, so the total is now 8.  It took far longer to drive there and back than it did to get positioned, measured, remarked, and zapped this first time. I have a 35-45 minute drive each way and have been told the rest of my visits there will be brief...like 15 minutes. So I'm scheduled for the next 32 week days at 10:15. That way I can avoid school bus and commuter traffic and be at work by noon.

Great news for those who's tumors have shrunk! Hooray for you.  And congrats to anyone who is getting hair growth. I must say that's it's pretty darn easy to get ready in the mornings when you're bald, but having hair again would be nice. I don't know if I'll ever cut it once it grows back. I think I'll just become one of those old women with long gray hair in a bun.

NorthernGirl...wishing you all the best for 24 more!

hugs to you Sherry!   I'm believing for you.     Maybe that's what we're here for ... to believe and have faith when someone else can't.    I'm pullin'  for ya!

Sherry-  I'm giving you a huge, virtual hug.  You have every reason to be scared.  AND you have every reason to believe you can beat this beast.  Just get up in that dang saddle again and get ready to ride.  You just keep moving in the right direction, you will get to the finish line.  Remember our motto "you don't have to be brave, you just have to show up".  I'll be praying for you Sherry. You go ahead and take that Ativan, you have earned every single dose!

A question for any of you ladies getting rads face down.  Did any of you NOT get a mold around your breast?  They didn't do that with me, just took measurements.

Sherry:  Hang in there! It is scary, but step by step you can get there. Keep the faith. You are strong.

Grneyd5600: unbelieveable. Good thing you have your pathology report handy.

I developed a fever today and headed into the hospital after referring to the onc nurse. Urinary tract infection. Now I am on 2 antibiotics, both with side effects like nausea and diarrhea. Like I need more of that.The bone pain is terrible, in my legs, pelvis and chest. I feel so sick.

I have a "go-to" place in my head, a happy place (I recall the sights, sounds, smells of a beautiful beach in the Caribbean that we went to a few years ago) It's my way of coping with this mentally. Please let this pass quickly

sorry for being pathetic. This sucks.  

Sherry and NorthernGirl-  I think the dark places are really normal  As Chey said this ain't the flu, this is cancer.  Having said that I also know from my own experience the dark places get smaller and even go away.  I know in my heart of hearts you can both get through this. 

Kittycat Have a wonderful weekend!

Hi all, I haven't been on in a while, dealing with the side effect still. I am finished but the side effects are still coming.. tingling and numbness.. my last treatment was a week ago and I am still feeling it.. I guess it takes a while to get out of my system.. I am loosing eyelashes everyday, the hair on my arms seems to be growing back, i can't tell if it is growing anywhere else.. I decided I was going to stop inspecting my hair daily because it only becomes deperessing.. I guess i had a false sense of reality.. I thought that when the chemo stopped, my hair would grow back just as fast as it fell out.. I thought that I would be perfectly back to normal.. Well Sunday and Monday I could barely walk.. So ladies don't make the mistake i made.. I still haven't really celebrated yet.. can't think of anything to do that is not expensive.. Open to any idea..

Really happy for those that have finished with me, and those that will be finishing soon.. So glad for the ones that haven't had any side effects.. Hugs and kisses to all..

grneyed-I just re-read your post.  Dang!  One would hope your BS would take the time to familiarize himself with your path report before your appointment.  Thank goodness you are smart and on top of things so they don't slip through the cracks!

kittycat- I am celebrating this very happy occassion with you and your sis. Does she live here in NYC?  Have a great time in my great city.  Let me know if you need anything.  Just don't get TOO crazy, I am too broke to bail you out of jail!

Northern-  Oh brother!  I hope the fever passes soon!  Praying for you!  Isn't it  amazing how soothing  the memory of a favorite beach can be?  I visit many a beach in my mind!

VickyThomas-  "You did it, you did it, chemo tried to kick your butt, but you did it"  I am so proud of you.  It should be easier from here on.  Drink those fluids and get the mean old chemo out of your system!

Okay, a question for any of you.  Have your Oncs checked your blood for hormone levels, vitamin D levels, tumor markers, Tamoxifen metabolism?  As I am wrapping up chemo, I wonder what I need checked?

Sherry9316 ~ The FEC regimen that you are on is tough, but you WILL do it!!!  The SE's are hard, but my advise is to take your anti-nausea meds before you feel nauseated, let people help you, if you're getting the Neulasta shot (which I am glad I did), take Clariton the day of the injection (I don't know why this works, but it alleviates the bone pain somewhat).  I took some time off of work through this, it was just too hard to work the long shifts when my body was trying to recover from the chemo.  I had done "okay" with my first 9 weekly infusions of Taxol/Herceptin, so it caught me a little off guard that this one was tougher.  That being said, you WILL do well, just hang in there, take your meds & let people help you as much as they offer!!!  My last one is next Tuesday. Thinking of you today!!!

Hi Ladies,

Well, I had #11 of 21 rads today, so half way done!  Thank God, I am SOO over all this treatment, sick and tired of doctors, and I still have a bone density scan and MRI to do, plus seeing all the regular health care folks I've been delaying due to cancer, dentist, (I know I need a couple crowns) dermatologist, (may as well get checked whilst there's no hair covering things up :-) ), etc etc. 

I have been feeling very down the last couple days, not cancer depression, just regular 'is this all there is to life' depression.  I have to say I feel guilty for feeling this way, I have a lot to be thankful for, but there it is.

Carrol, i'm glad you're having the Neulasta.  Make sure they give you the Taxotere very slowly.

Chey, you sound great!  We all worried about you a lot back in the beginning!  We've all come a long way in the last 3 months!

Julia

Thanks Bon it's good to hear someone come out the other side. I am starting TCx4 on october 5th. I am pretty sacred right now, but if you can so can i.

Carol2:  yup, I get the Neulasta after every chemo infusion.

I don't know how I developed an infection... But in the past 2 weeks, 3 of my kids had colds and my mom came over with a cold. Even though we were careful with masks and disinfectants, infections happen. I still have a fever today, but it's not high. I will be going back to the hospital tomorrow. I have had chest pain all day. I thought it may be heartburn, but Zantac is just not cutting it.  Better get things checked out I suppose. The bone pain continues, but the meds are taking the edge off.

The plastic surgeon called today. Thanks to a cancellation, I can have my consult on Sept 27 instead of November. My onc will be thrilled. Gosh, another road trip... I am glad that we are doing this before the weather gets bad. I hope we can arrange mastectomy and reconstruction in the same surgery. (Who knew a few months ago that I would be thrilled to make arrangements to mutilate my body... how things change)