Starting Chemo April 2009

Leslie...good luck on Monday..you will be FINE....it really is so nice to know that chemo is done...and I'm not even 24 hours out yet!  Do a cartwheel for me since I was chicken...if you do it I promise I'll do one after radiation!

Betsy and Chelev...I have lost most of my eyebrows and lashes too...filling the lashes in with eyebrow pencil and wearing lots of brown eye shadow..some eyebrows are coming back in but they are white too!  Oh well, I don't think anyone notices unless they get very close..I expect to lose the rest of them in the next week or so..just because!

Paula..good luck to your husband...you guys had quite a scare!  Do you think you will be able to finally take that vacation soon? 

I'm mad at myself for not doing a cartwheel when I practiced them and even had my daughter practice too!  I just chickened out....all talk, no action!  I kept thinking that even though I had practiced they would think me a complete idiot when I did one...so I didn't....You will just have to use your imagination!

PAM - Good to hear from you!  Keep hanging in there August 25 is only a couple of weeks WOOHOO!  We'll definitely be here to celebrate with you.  Without a doubt you need your rest so keep taking care of yourself and keep taking each day as they come.  You're almost there and then when you finish we'll all have to have a CYBER PARTY to celebrate us April girls!!! HUGS, Dawn

Oops Pam sorry, I missed you!  :-O

I know what you mean about the naps...but I could never stop taking them. I still take them, especially after I eat. Dunno what it is about eating, but since being on chemo, I cannot stay awake for more than half an hour to 45 mins after I eat something, and I'm not even eating that much yet!

Hope your next treatments go as well as they can (with mildest possible SEs).

 {{{hugs}}}

~Lena.

Titan & Lena- I guess baldness is in the eye of the beholder. I think it feels great and I just don't care how it looks to others! Maybe it's because I'm blessed with a fairly nice shaped head - I don't know. My hair was very thick, dark (few grays) and wavy. I thought being bald would be awful. At my first onc's office visit they had a book of photos of all these very different bald and very beautiful women. To me it was very empowering. At first I was embarrassed, now I think screw it. Plus, I love hats and don't plan to give them up even when my hair (probably all gray) grows back. But I have to admit, I will be happier when it all grows back in as it means chemo won't be controlling my life any longer.

I've been asked to be in multiple drug studies and have turned every single one of them down due to the SE's. I think it seems somewhat unethical that the onc doctors are pushing the drug company studies. I think a third party person should be discussing it with patients. I understand the potential benefits - (I've been a recipient) but was shocked at reading the SE's of the four studies presented to me. Isn't it the doctors duty to do no harm to his patient? It seems to be a conflict of interest for them to be pushing something that can do further body damage. Ok there is my rant for today.

Leslie and Pam - hang in there.

Dawn- each day I feel a little stronger...still not ready to even practice a cartwheel. But I do plan on trying.

Betsy

Titan -- I hate hats too and never wore them with the sole exception of winter (northeast USA has some brutal winter weather). The reason I wear them in winter is because it's either wear the hat or suffer the "cold earaches" I get if I go hatless on  a windy, cold day. Other than that though, no hats for me, ever.  LOL with you here too -- I don't understand why healthy people with full heads of hair wear baseball caps either (outside of playing baseball or softball).

Sewer Mouth (at least when I talk about having it) isn't excessive use of swear words...I use that term to describe the constant disgusting yucky taste in my mouth from the chemo. A lot of people have posted (and even my chemo nurse when she was initially telling me common SEs to expect) that chemo leaves a METALLIC taste in the mouth. Even here in BCO's pre-chemo shopping list was a suggestion to stock up on plastic eating utensils so as not to worsen the Metal Mouth by eating with regular silverware. Well, my mouth never tasted metallic, it just tasted FOUL. So I started calling it Sewer Mouth. And yes, I still have it... :-(

Betsy -- I'm happy to agree to disagree with you on the "bald is beautiful" concept, but I'm absolutely in full agreement with you on the issue of not wanting to be in studies which will mean taking the whatever-it-is for a few YEARS, and for fear of the SEs. The only way I'd consider saying yes to being in any study would be if the drug was something my doctor wanted to put me on anyway, and, if it was something I agreed with his suggestion to try. And the only substances I'll ever agree to at this point would be ones that do NOT have any of the side effects I had from chemo (or ones associated with chemo which I was lucky enough not to get, like bone/joint aches or my nails turning weird colors and falling off). 

And yes, Betsy, "do no harm" IS supposed to be the guiding principle of medical practice. It's from the Hippocratic Oath, which all doctors supposedly take when they finish medical school and go into practice. The original version (translated into English -- my friend Google found it for me) reads as follows:

I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement:

To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art.

I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.

I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.

But I will preserve the purity of my life and my arts.

I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art.

In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves.

All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.

If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot.

But there is also a modern version written in 1964 (thanks again to my good friend Google), which is the current version used:

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

Apparently the Hippocratic Oath makes me, at least, wonder where chemo fits in, when it comes to "doing no harm" to the patient. There I was running around with advanced cancer for who knows how long and with the exception of occasional slight twinges of pain, I felt FINE -- until I agreed to be TREATED for it, and THEN I ended up feeling deathly ill and like complete crap! (Maybe I should have waited for it to make me feel ill, so I wouldn't have minded the treatment so much? LOL, but for me, the treatment has been FAR worse than the disease!)

But, I digress...last but certainly not least...

Paula -- I'm glad you and your girlfriend didn't get arrested for boozing it up in public like that! LOL!  I hope the study goes OK, i.e., no bad SEs or wanting to drop out on account of them. But yeah, if your onc says you need to be on any of this stuff, you may as well at least try to participate in the study.

Hmmmm, maybe my brain is coming back a tiny bit today! It only took me about an hour to write this post, and I was able to address some of you specifically! Posts of this kind of length and specificity WERE taking me 2, 3 and 4 hours (up to a full morning or afternoon) to write, when I bothered at all.

Well, gotta go now. Hope you all feel as good as you can possibly feel.

~Lena.

Pam - we are pulling for you. Only a few more weeks and you, too, will be able to say PFC!

Amazing to me how far we've come since the early posts about our hair falling out and how sore our scalps were. I met a woman just starting chemo and she mentioned how sore her scalp was and I said "Oh I forgot all about that!"  Amazing how our memories work, how we are able to forget the worst of the pain (sort of like childbirth - if the memories didn't fade, we'd all have only one child!).  And now we are looking for hair to start growing back, and moving on in treatment.

What a great support this board has been. And while I am going to move into a rads board, I am DEFINITELY going to stay here too and I hope you all will as well. We are sisters forged in the fire together!

Amy

Hi all,

Dawn- good luck on Monday - I will keep you in my thoughts and prayers.  Please let us know how it goes? Last Neulasta, Titan, hurray!  Betsy, I swear I am ready to go without, just like you, only wish I wasn't so gray. 

For any of you thinking about this biphosphonate trial:  I entered it because the way it was presented was basically that it could only help. I ended up on the Ibandronate arm and have been part of it for  over two months now.  I certainly am not trying to talk anyone into anything, that is not what we all are here for; but I would like to share that I am experiencing  no S/Es from the Ibandronate.  The most annoying thing is that you have to take it first thing in the morning, with a full glass of water, stay sitting upright, and not eat or drink anything for a half an hour.  That just gets some getting used to, and once you get into the habit, it is like riding a bike. I was told that this study has proven effective for stage 3 women and that is why they want to try it on lower stages.  The premise, as I understand, is to strengthen your bones, because if you do end up with a mestasis somewhere down the line, the bones are one of the first places it likes to go.  If your bones are strong (because of the biphosphonate), there is a lesser likelihood of the cancer being able to set up shop there.  You do have to visit and be cleared by your dentist before they accept you into the study, and need to stay in close contact with the research dept. to get more meds and for various observations, but all in all, my thought was: there is little that can hurt me here, and much that can help, not only me, but others who will find themselves in my position somewhere down the line.  If anyone wants to know anything more, I would be happy to share. 

 Has anyone out there who is ER+ and PR+ been given the opportunity to do an alternative to Tamoxofin?  Seems Tamoxofin has so many S/Es.  If any of you have moved into that "part of the journey", might you post your experiences? 

Lesley, we are all still here.... waiting for you!  Have a great weekend, everyone!  Tammy

Lindatwo,

You're welcome, glad I could help. When will you know if your bloodwork is OK?

Glad to hear your SEs are subsiding, too. I'm still fairly messed up but am beginning to notice some small improvements in the muscle ache/exhaustion department. Yeah still have that, but now instead of feeling it from just getting up from the couch or desk chair,  I can actually walk across the apartment before it hits. Still got Sewer Mouth but not as severely, food is more reliably tasting like food, and just enough fog is clearing so I can do a little forum posting at least. May try my hand at something a little more intellectually challenging soon just to see if I CAN. Oh and yes, it's Saturday so I looked -- my left foot/ankle is smaller again -- almost down to normal now! Only a few more days now, I bet. Then I can stop taking the diuretic (and the horrible potassium horse pill that goes with it!).

Hadn't thought of the still really super short hair as looking like a dyke...and I've never thought women with really short hair "had to be" dykes anyway. My thought was always, well, before having cancer/doing chemo, "well, it's her choice if she wants her hair that short, but she'd look so much nicer if she'd grow her hair longer." Now though, if I saw that I'd be wondering if the poor woman was a survivor who'd done chemo and felt her hair couldn't grow back fast enough, but didn't want to do the wig/hat/scarf thing now that she had SOME of her real hair back! I mean it must happen, right? And... I dunno, don't dykes wear makeup too? I mean, if there are heterosexual women who DON'T wear makeup (me!), there must be dykes who DO, right? I've seen women with super short hair (which was also unstyled, uncurled, i.e., nothing "feminine" looking about it) but they wore makeup and/or jewelry. Just because it's not my style and short hair makes ME feel unfeminine doesn't mean women whose attitudes and chosen appearances are opposite to my preferences are dykes! LOL

Glad your reconstruction was successful and that you think it feels amazing!

Tammy -- I'm on Tamoxifen -- I started on 7/31 so yesterday was a week. I still have hot flashes, but I was getting those from chemo and think they're still from the chemo. 

Dawn -- good luck with your surgery.

Gotta go, catch you all next time...

~Lena.

Betsy, I am so sorry that your Onc was pushing the trial on you.  I had no pressure at all - in fact, I was the one who asked about participating in one.  It isn't right to make a patient feel bad because they are hesitant, or simply do not want to participate in a triaL It even says this in the myriad pieces of paperwork they give you to sign.  I would question why someone was pressuring me too.  Tammy

Dawn,  Good luck on your surgery on Monday! I will be thinking of you and praying for you.  I had an exchange on one side and a lift on the other.  The exchange side has hardly bothered me at all; it was so much easier than the mastectomy/tissue expander surgery.

Lena, I forgot when I had my blood drawn to ask them to send me a copy of the results, so I'm not sure when I will hear from the doctor. They will be checking for vitamin 'D' deficiency, kidney function, and tumor marker.  My surgeon did the tumor marker test when I had the mastectomy, and my oncologist was not happy about that.  He says he doesn't think it is an accurate test, but once it is done, he feels obligated to continue to check it.  Sure enough, after the mastectomy, the number when UP instead of down.  It will be interesting to see what it is now.  If it is not down to normal now that I have finished chemo, they will look closer at a lung nodule that I have. (Exactly how they will do that, I don't know!)

 I was thinking about your story about leaving your key in your door........ tonight I went over to my daughter's house to take care of her dog while she is gone.  We live in a small town, and I am the school secretary, so know every kid in town, and most of the parents.  Well, I went with just a baseball cap on, and took that off when I was in her house.  She has one of those dead bolt locks that is really difficult to turn, you have to jiggle the key, make sure it is all the way in, etc.  So....here I am standing out on the porch, finally get the key to lock the door, and when I turn to leave, I realize I left my hat in her house! I swear everybody in town is walking down the street at that moment, and I can't get the key to unlock the door.  I felt like I was outside naked or something!  Good thing we can laugh at ourselves. Soft Hugs to you all.

TITAN - I can just picture you with your head out the window and your tongue hanging out LOL!

LENA - Here's to taste buds!

Thanks so much for all your wishes for tomorrow, you guys are all so thoughtful.  So many times I find myself laughing and crying at the same time when I read some of your posts!  I love ya all!  I'll try to post something late tomorrow or Tuesday and let ya know how it went. 

HUGS for a great Sunday,  Dawn

Dawn, hoping the surgery went well yesterday and you are feeling okay - but probably still uncomfortable.  Hugs to you!!!!!

Titan, I know what you mean - doesn't it feel good to take off the darn wig and let the breeze blow in your . . uh, fuzz?  It still feels good, especially in the summer, with my hair at the not-quite-filled-in-enough-for-a-pixie-cut-yet stage.  I remember running out the garage door after one of my dogs, in my nightgown and bald head and the neighbor out picking up his paper.  I think I scared the crap out of him - must have looked like an alien with no eyebrows, bald head and nightgown!

Hi bc sisters, Arrived home from surgery around 3pm yesterday.  My poor DH - I'm a fainter and I fainted in the car on the way home just like I did after my mx.  Doing it after surgery turned my poor husband into a basket case, it's hard enough for him when I normally do it but right after surgery was worse.  I was fine by the evening.  A little sore and kinda hard to sleep propped up but not too bad.  I take the bandages and surgical bra off tomorrow.  Just going to take it easy today.  Thanks so much for all your well wishes and checking in on me - I appreciate it so much.  Hope you guys have a great day!  I'll check in later and see how you're all doing!  HUGS, Dawn