Starting Chemo April 2009

Trust me, ladies . . . Peach Fuzz is the beginning of the journey back to hair land!!!  I only have a very thin spot on top (think male pattern baldness) that you can really see the scalp through.  Everything else is thin but getting thicker and softer, especially at the back of the crown - it's getting thick and lush and slowly longer.  It does come back, it just is all about patience, which I know I don't have most of the time!!

Hi Ladies,

 I haven't posted in awhile since I finished in June, but I have been checking and praying for you all.  Congratulations to all who have finished chemo and are moving on.  For those who are alsmost done, hang in there.   You will be celebrating soon.

I've been on Tamoxifen for a month now and haven't had much of the SE of hot flashes.  I did start my period again which had stopped for awhile during chemo.  My onc is suggesting that i get Lupron for ovarian suppression and Zometa for osteoporosis prevention.  Is anyone going that route? 

CONGRATS ALAINA!!! What a great feeling that is, I just finished a week ago today.  So happy for you!   We are all here to help each other and share our experiences and I think that just makes each day more bearable.

TITAN, the countdown is on - do you have your cartwheel down pat yet?  I'm expecting to hear all about it!  I have about 1/4" of CLEAR hair on my head, can't wait to color it.  Peach fuzz - what a wonderful thing!

LESLIE, PAM, PAULA, Hope you're all doing well.

BETSY, Hope you're starting to feel better.

HUGS to all of you, Dawn

Congrats Alaina!  Stage one is done!  I think chemo is the worse part..no matter before or after surgery!  The word "Chemo" just sounds bad!  Then you sit there thinking about all those chemicals going through your brain and your heart and everything else!  Scary thought! But most of us are DONE or almost done...Hallelujah!

Dawn...I need to practice my cartwheels a little more!  7 days to practice...I also told my DH that I was going to yell the "F" part of the PFC when I leave the clinic also...do you think I could do a cartwheel and yell "F" at the same time?  Hee Hee!  I think my DH gets a little freaked out with me sometimes..he is maybe a little unsure of what I'm going to say or do next...he doesn't know ANYTHING about the cartwheel!

Never had those hiccups you guys talked about but the hot flashes....those are something...talk about steaming up the glasses! 

I had my 8th out of 12th taxol/herceptin dose today. It was completely uneventful (thank goodness). I slept for a good part of it and was out of the clinic by 12:30! Yay. I had the doctor put steroids back into my premeds so I wouldn't be nauseated.

I have to admit, although I'm excited to be closing in on number 12, it still seems like a long way off right now. I have a lot to look forward to and I'm trying really hard to focus on finishing up chemo, but it still feels really far off.  After chemo I get radiation, lupron and an AI, and herceptin until next May. I'm trying to focus on finishing up chemo and moving forward, but it feels burdensome to me. I admit I'm scared. I'm only 45 and have these beautiful 7 year old daughters, I want to be healty and strong. I don't feel either one right now. I'm really looking forwad to getting some energy back so I can be strong (physically) again.

Sorry to be a downer. I'm so so happy for everyone who has finished chemo. It is such a long and tiring process with so much to it, cartwheels seem entirely appropriate, as well as  a big party and lots of fun!

Pam

Congratulations on all of you who are finishing up your treatments.......wish I could do a cartwheel with you all, but that hasn't been a possibility since way before chemo   It's been a long time since I've posted, finished my last chemo on June 11th, and am finally feeling somewhat "normal".  Of course the swollen ankles and fuzzy head tend to bring me up short when I start to forget. I've been taking biotin and using biotin shampoo, and it seems like the hair is coming in on my head pretty fast, tho like others, a lot of it is "clear". I starting losing eyelashes and eyebrows in earnest about a month after my last treatment.  That was so discouraging! I quit using mascara, and refuse to look closely at my eyelashes anymore. ( My tried and true method of dealing with something unpleasant.....denial!)  I'm hoping someday I'll just wake up and be shocked to see eyelashes! 

I had to wait 6 weeks after chemo before having surgery, so a week ago I had my tissue expander removed (YAY!), and a lift on the other breast. It just seems like it's one thing after another, but I'm so glad to have one more thing out of the way. I've put off seeing my oncologist, because I am dreading the AI.....I see him next week for the inevitable.  How are you all dealing, and what are you taking?  My onc mentioned Arimidex, do any of you know the differences between Femara, Arimidex, and Tamoxifen?

Lesley, congrats and good luck on your last chemo....sorry I didn't respond to you earlier, I've been out of town, then had surgery, company, etc., etc. I go back to work on Aug. 10th.  Until then I will be available just about any day if you want to get together for lunch.  After that it would probably have to be on a week-end. Let me know if you feel up to it!

Linda

Lesley,  Hope your last chemo goes well, and your SE's are minimal!  My fingernails got sore, mostly after my last tx.  They got a funky rainbow shaped red line through the middle of them, that hast mostly faded away.  They are no longer sore, but are kind of wavy now.  It is amazing that our bodies can tolerate all of these chemicals and still function.  I imagine someday our grandkids will be horrified at what we had to do to treat cancer. (Just like blood-letting horrifies us now!)

No radiation for me.  I'm not sure what drives the decision to treat with rads or not, do you?  The doctor never mentioned it to me, and I certainly wasn't going to bring it up!  Hope you don't have any problems with it.  I don't quite understand once the tumor is gone what exactly they radiate?

Good luck on your upcoming surgery, it's a piece of cake after everything else we've been through. Will you have reconstructive surgery?  Sounds like you will have plenty of help, that's great. Maybe we can get together later, when things calm down for both of us!

Linda

Ladies - I DID IT.  FINAL chemo was today. (Of course I have 8 more months of Herceptin, and radiation starts in 3 weeks, and Tamoxifen after that.) BUT the hardest part is OVER!!!!!

It was not without some last minute drama.  The port wire (catheter) has been protruding through my skin more and more the past few weeks and making me uncomfortable AND concerned that it had gotten disconnected or something was wrong. So at my pre-meeting with onco doc yesterday (in which I passed my blood tests), he wanted them to flush the port to make sure it was working. If not, they would have to take it out and replace it - possibly IMMEDIATELY (like that same day!). It was pretty tense and I didn't have my numbing cream so it HURT when they stuck me. I have to admit I really melted down from all the pressure, was so scared of having surgery, or possibly missing chemo or who knows what else. Just sat in the seat and cried and cried and I even needed a stranger (the adult daughter of another patient) who was there to hold my hand to get me through it.  It was very emotional and draining. BUT the port worked fine and I was all approved for chemo, which made me so happy. Never thought Id' say that!

So now I'm home and resting and waiting for the LAST set of SEs to show up. It is such a wonderful feeling to know that as I start to get better this time, it is FOR GOOD.

Thank you all for all your support. I guess you can say that I am PFC now!

Amy

Hey there everyone....

Congrats to those of you who finished your chemo since my last post.  Hope you'll accept hugs (all the strength I'm capable of at this point) rather than cartwheels, though. I had my last TAC a week ago today. 

I know, those of us who are finished only have one place to go from here in terms of our side effects going away -- UP! Another patient at the cancer center today told me about this (said she's 2 months out of chemo  -- she did 6 rounds of TAC too, just like me, and is feeling way better now and said I will too) to reasssure me. And wow, she looked so beautiful. Since she was neither openly bald nor wearing a scarf I  figure she was probably wearing a wig still (hell, I was wearing MY wig! LOL), but she looked so healthy as well as pretty, and she seemed so...energetic and vibrant!  (while I'm there paler than a ghost, holding onto the reception desk feeling dishrag weak and getting a little dizzy just standing while we wait for the receptionist to get back so we can tell her we're here). I only wish I could believe what she told me!  What is it about chemo anyway, that even when you know it's only temporary (you'll only be on it for a few months), it totally kills your sense of objectivity so as to make you FEEL like you're going to feel and look like crap for the rest of the time you have on this earth?! 

I'm so happy for those of you who've been off chemo a bit and have actually started your journeys UP and AWAY from feeling and looking awful. (Chelev! Hair starting to grow back!? WOO HOO!!!!!)

Wish I could say my journey to the UP place has started, but apparently I need more time. That last treatment hit me like a megaton nuclear warhead, and a whole week out I feel just as crappy and worse than ever -- my appetite isn't back at all yet, and what small amounts I struggle to make myself eat anyway (scrambled egg or hot cereal for breakfast and a microwaved can of Chunky soup for dinner) doesn't really taste like food yet (this used to begin abating by Day 5-6 on the average but now it's Day 7 and still just as bad as when it originally hit)....still zero energy, brain's still totally dead, still have hot flashes, no sexual desire and my mouth tastes like a sewer. Oh, and did I mention being exhausted from the moment I get out of bed in the morning?

Well, at least the diuretic is working on my Taxotere Feet. My right foot/ankle is back to normal, and while the left foot/ankle is still swollen, it HAS gotten smaller.

New Chemo Brain Story for you all: my keychain holds all my keys, which consist of the key to get into my apartment building, the mailbox key, two keys to get into my apartment (deadbolt up top, regular on bottom) and my car key.  Well, I go downstairs to get the mail (the only time I don't lock the apartment) one afternoon last week. The next morning at 11:30, my doorbell rings. It's a guy saying I left my keys in the door!  :-O

Other than that...well, Titan asks us chemo finishers about our Phase 2 plans, and I guess now is good timing because the reason why I was at the cancer center today is because I had an appointment with my oncologist and once he examined me, we discussed my Phase 2. I got a couple of surprises, actually...and I'm going to have to do some online research today or tomorrow. Here it is:

1. I got a prescription for Tamoxifen today, which I start taking tomorrow. No real surprise here though, because I've known my tumor is hormone positive since I got the biopsy result. Oh, and while the chemo did shrink it considerably, it's definitely still THERE -- we didn't actually get RID of it. Dunno about how it worked on my mets though, which brings us to:

2. I'm getting almost totally re-scanned: CT (chest/abdomen/pelvis), PET (whole body), Bone and MUGA scans, to both see how I compare with my pre-chemo scans (apparently I don't need a Brain MRI this time, though I had one of those too originally: came up negative for brain mets but he could see the aftermath of my stroke from 15 years ago), and also so he can determine if he wants me to have rads (surprise! nobody told me I might need rads, just the chemo!)) or even the mastectomy (BIG surprise!). Scanning dates are all going to be between 8/18 and 8/25/09, and after that I have an appointment with him on 9/10/09 for an exam and us to discuss the scan results, how I'm doing on the Tamoxifen and his recommendations based on that. He also says he's considering he may eventually want to put me on Zometa too (surprise!), but again, he wants to see my scan results etc. before he makes any decisions. Works for me!

I was shocked as all hell when he said I MIGHT not have to have the mastectomy, which I'd thought was going to be my absolute Phase 2! I mean he told me initially that I had to go on chemo to shrink the tumor enough so they could do a mastectomy at all! Um, well, now the word is that since I'm Stage IV (I presented that way) and my tumor never got "messy" (i.e., it never ulcerated or broke out of the skin of the breast), a mastectomy MIGHT not be needed. He says Stage IV patients don't  necessarily always need mastectomies unless they DO get "messy" like that. But he's also thinking maybe (depending on the scan results which "resize" the breast tumor, and how my mets are, namely if the chemo killed them...which I doubt, since my hip still hurts sometimes) -- if scans show the mets are gone or near gone, he thinks rads might shrink the breast tumor even more, and in that case I should have rads and the mastectomy so maybe have a shot at an actual remission. (Which yes, I know would be temporary anyway, being a Stage IV, but I'd REALLY like to be Myself again before I die!)

Well, I'm glad I'll have some TIME to begin to get over the chemo before anything drastic happens (oh yeah, today's blood test result: my platelets, red AND white blood cells are ALL on the Endangered Species List! Wonder if THAT'S why I still feel so lousy?!). Next Project: need to look up Tamoxifen side effects and read up on Zometa...

Try to feel better, everyone!  {{HUGS}}

~Lena.

TITAN - I'm so vain I guess LOL, can't stand the clear look.  I'm holding off on the mousse for now as I think it was sticking more to my head than the hair (that's the stuff that turned me into an eggplant).  My onc said I could do it at 3weeks PFC.   My hairdresser uses Aveda products so they are plant based and no harsh chemicals so at the end of the week 8/10 after my exchange surgery I'm going for color..  A note on the Neulasta shot, I had to do the shot after my last treatment.  Part of the reason for me was that I wanted my port out ASAP (getting out this Mon) and then I have my exchange surgery on 8/10.  My onc didn't want me to risk any infections creeping in.  I don't know what protocol usually is and I don't think I remember reading anyone else's post about after the last treatment.  The end is near right???  HUGS, Dawn

TAMMY - HORRAAAYYYY!!!!  for you.  So happy for you.   My exchange is 8/10 so we're pretty close in our surgery dates.  It is good to just know that this is the last time you'll have to experience all of these side effects.  Celebrate and enjoy!!! HUGS, Dawn

Titan - Annabelle's Onc used the same logic to skip her Neulasta shot after her last T/C #4.  As a result, her WBC was way low when she went in for her checkup a week later.  We ended up making two extra trips on the weekend (Fr, Sa, Su) to get Neupogen shots; and another trip on Mo for another blood test.

Annabelle said more than once during that episode that she wished she could have had the Neulasta.  Not only would getting the Neulasta shot have saved an extra three trips to the Onc; but the bone pain side effects from the Neupogen were worse than from the Neulasta. 

Do what you need to do, but that was our experience in skipping the Neulasta.

Ok..I' will get the stupid shot....I just hate  the feeling on Frday after I get the shot on Thursday...my dh said,,Joyce.,.you have ONE more time..just deal with it....so I will...I guess we have all been brave for so long we may as well be brave again.....I just want to be ME again...not feeling like I'm in some drug induced fog!  It can't happen soon enough!   Patience, Patience, Patience.....

Have a great weekend everyone!   On Wed. afternoon I will be on here partying...get to join the rest of you in being PFC....!

Titan,

Glad you decided to go for that last shot, as tough as it might be.You can do it! I'll be sending you warm wishes for strength on Thursday and through next weekend.

Betsy

HRF - I think hair growth depends on the type of chemo drugs you've had and your own system.  I had 4DD AC & 4Taxol.  I started to see peach fuzz on my head between my second and third Taxol treatments.  Good luck, it's so hard to wait for it to come back.  HUGS, Dawn