Starting Chemo in June 2005

Analemma

I'm off to my first Taxol in a couple of hours. Don't know why I'm feeling such trepidation about this - almost more than about starting chemo at the beginning. I just want to get it over - it's the fear of the unknown, I guess.
Brenda

NancyM

I came on this morning because I am feeling so sad about Peter Jennings. I was shocked that he died so soon after his diagnosis, but after watching the news I learned enough about lung cancer to know that it wasn't so shocking after all, unfortunately for those who have it. I feel ashamed for ever feeling "poor me" when I hear lung cancer has only a 15% survival rate at 5 years. I feel damn lucky this morning that I have my type of cancer. It could be oh, so much worse.

Thank you, NoSurrender, for your eloquent post. I really needed your wisdom this morning. It seems you always know just what to say. I am so grateful that we have this board to come to in times of need, and that we have this sisterhood to get us through.

JoMac

Thanks No Surrender for being ahead of me on the Peter Jennings announcement. I would have gone all over the place with emotions but your post let me stay centered and not get put off balance.
I am sad to hear of his death. I have a good friend with lung cancer who is now in his second year since treatment. I hope he is one of the 15% who make it. He sure seems to be in good health.
Opps! there I go with percentages again.
One question?
What is it about Dr. Susan Love's book that you find objectionable?

Reeny47

Good Morning ladies,
NoSurrender, the post on Peter Jennings and the rest of your wonderful words made me cry. It really touched my heart and I appreciate you. Mr. Jennings was dx with his cancer along the same time frame as me. I think I had just found out a few days earlier and was watching the morning news when I heard about Mr. Jennings. I was shocked but amazed how all you see to hear is something about cancer or someone who has cancer when you know you have it. Amazing! I sure like Peter Jennings and was shocked how short his fight was. I am thankful he was surrounded by his family and he did live a 'good' life.Feeling sad.... Maureen

NancyM

Reeny, I agree about noticing more people with cancer now...I was reading the Parade magazine that came in yesterday's newspaper where someone asked what happened to the original "Bewitched" cast. I was so surprised to see that Elizabeth Montgomery died of colon cancer, Agnes Morehead died of lung cancer, and Dick Sargent died of prostate cancer!

I want to make sure that I can say I lived a good life, too. I want to be DOING things, I'm so sick of being tired right now.

MichelleB39

RIP Peter Jennings. What a guy! I loved the quote about having lived a good life. That is what we all want to say. What matters is what you do with your dash.

MichelleB39

Can I whine too? I know you have all said that #3 ac is the worst. I just can't get any energy going this time. I know, NS, that is the way chemo is. I just needed to vent to you all.

Also, for those of you finished with ac, when does the awful chemical smell in my body go away. I am ready to puke just thinking about it!!!!

danahollis

Hi Junies!

NS... thanks once again for your words. You have such a way with them! It's sad that another person has lost their battle with this awful disease.

Michelle... I hated that smell too. Good news it that with Taxol... I don't notice anything. I think it's the Cytoxin that just gagged me! Yuck! You whine away... it'll make the time go by!

Reeny... same thing happened to me. Also, our local news anchor, Kristin Stinar, was diagnosed with Ovarian Cancer at the same time. It seemed to be everywhere in my mind. Unfortunately... we are truly not alone.

Nancy... I read that Parade question to my husband. too. I Hate Cancer!

Anyway, I spent most of the weekend laying around. I was tired and full of aches. The Oxycodone my Oncologist prescribed for me makes me sick to my stomach so I'm going to ask for something else I think. Tylenol doesn't really touch the aches when they are at their worst. But.. as I emntioned before... this is still better than AC!

Hope you all have a great Monday!
Hugs to you all!

LizFL

Peter Jennings will be missed by many He was an excellent journalist, reporter and news anchor. He exemplified integrity in the news media. I don't think they make them like that any more.

It feels good not to have another chemo coming up until the end of August, although there are times I wish I could dose dense the taxotere too...just to be done with it. It will be nice if I get to feel normal for part of the time....a new feeling!

Liz

Analemma

Just got back from first Taxol. It wasn't bad, no allergic reactions. But, I'm exhausted! My hemoglobin is low (10.7) and they gave me a lot of Benadryl in the premeds, and I can barely keep my eyes open. Funny thing you ladies say about the smell of chemo - with AC I never noticed it, but I could actually TASTE the Taxol.....nurse said she had never heard of that, but I swear I could. Going to vege out on the couch now.
Brenda

rmmom

I am starting to resurface after being tied with chains and cement and dropped in the deepest part of the ocean by cytoxan mofia. I think one of Kimbe's mermaids came by and pulled me up for air. That or the fact I didn't wear make-up this morning to my office visit.
I don't have to do anymore a/c -I have lost too much weight because of the throat sore that keeps getting irritated by swallowing. I had the swish and spit stuff-now they are giving swish and swallow-so there is such stuff. Why didn't they give that first? They send some lady to be with me while they gave me fluids that was in BAD shape-everything caused a reaction with her body. It was so sad.
Anyway I have two weeks off before Taxol-I am hoping it will much easier on my body. I still feel some guilt-crazy right? Like I should have tried harder but I am going to keep in mind NS's qoute from Peter Jennings-I really have been as brave as I could have been...especially considering my mother is so afraid of water she used to scream hystically at the side of the lake my dad tried to teach us to swim in, so much so he gave up. My siblings and I can't swim.....

JoMac

BevN. Guilt is not allowed. You did the best you could . Your body did as much as it could and that is all you can ask for.
Your DR. probably knows that at this point the side effects aren't worth the cost to your overall health.
Taxol will be easier and you have two weeks to get ready for that.
Just the fact that you are doing treatment shows how brave you are.
Please don't beat yourself up over this.
I have already decided I am not a cancer patient who will be receiving an A+. I have been emotional and scared and sometimes brave but my point is that this is not an experience that I have to "Ace". I just have to do the best I can and sometimes the best I can do looks clumsy and messy.

saleboat

Thank you everyone for the birthday wishes—we had a fantastic time on the Cape!

BevN—it bummed me out to hear that you were crying about the call from the American Cancer Society—I don’t know what specifically upset you, but if I were to have received that call, I would let her know that diet and exercise mean NOTHING--- okay, maybe exercise can help with recurrences, BUT-- I have been a vegetarian for 20 of my 35 years and am a life-long athlete. And geesh—why did that woman want you to raise money NOW--- like you don’t have anything better to do while you’re in treatment?!

MindyP—sorry to hear you missed a treatment--- by now it is just a few more days and you’ll be half way done.

RebeccaH—congrats on getting out of the ticket…it is nice to feel the Towanda-power, isn’t it?!

Watson--- re: hair--- I’ve had a number of people tell me how good my hair looks—someone even asked me where I had it done! Most times I just take the compliment and laugh once I’m out of earshot. When I ran into someone who knows me as a blonde, but then had a red wig on--- she asked me why I wear wigs “do I just like the ability to change?” I guess I’m young for bc, so she didn’t stop to think it was anything other than a fashion statement. People are funny.

Nancy M—how’s your face doing? Isn’t it strange how these things happen and baffle the docs? I have had one weird thing--- sore wrists that come and go--- my Onc just kinda shrugs and says ‘let’s blame the chemo.’

Fi--- re: whether or not to do the next chemo phase of your treatment. Everyone is going to have a different opinion, but I say that 7-8% is a big number. I mean, wouldn’t you like a 7% raise? Or imagine you gained 7% of your bodyweight—for me that would be 10 lbs--- I’d be bummed—that’s not easy to lose.

Jenster—I had the exact same thing with my fourth A/C—the rest have been relatively easy (with the third the easiest) but the last I had along with my period. IT SUCKED!!! I had a taste of what some others on this board have been feeling and I don’t know how you ladies did it--- especially with kids at home. You’re all amazing.

Nosurrender--- thanks for the snowflake analogy. I’m diggin’ it, especially in this hot NYC weather. When I’m standing on the subway platform tomorrow, I’ll be saying to myself “I’m a snowflake, I’m snowflake, I’m a snowflake…”

BrendaF—hope the first Taxol went well. I’m up for Taxol #1 on Friday.

JoMac—my surgeon was very thumbs down on the Susan Love book—he said that when he read it, he was outraged because of something factually incorrect, and then calmed down to turn the page to find that he himself had been misquoted by her. I think there’s also the feeling that the book may needlessly scare some women. All that said, I’ve never read it.

Dana—sorry to hear about the bone pain, but glad to hear that it is still better than your A/C experience.

Me— we had a wonderful trip to the Cape--- I had a really rough week after my last A/C, and I was glad that I felt well enough to go. It was nice to take some long beach walks and see family and friends. It also made me a little sad because I can clearly remember what it was like to be there without this dx hanging over our heads--- sometimes I just tear up thinking about what this had done to my husband and how he worries--- and how wonderful our new life together was before all this happened. It is a big loss, the sense of security that we had, but I guess dealing with this dx is more than trips to the Onc, it is somehow getting to a place that no matter what happens, we feel like we can deal with it. Sigh. Anyone there yet?

Jen

kimBe

NS-you simply amaze me! Thank you for all of your posts!
Bev-all 3 of my kids are competative swimmers-and right now I feel like a jelly fish-but I'm still in the swim of things.
Any input on Taxotere and working? I am guessing I will have it on Thursday which is when I had my AC and fortunately have been able to work every day but treatment day, but when I read your posts about the benadryl am wondering if I'm way off base.
KimB

LizFL

Kimbe...I was doing A/C on Thursdays for the same reason...so that was a good question on the Taxotere/Taxol...hope we get an answer soon.

Lived life on the wild side tonight...went for a manicure and pedicure...it felt wonderful! No cuticle cutting or anything that could cause a problem, but I did put my feet in the cesspool!

Jo Mac and others...none of us have to be brave, stoic or courageous. All we have to do is stumble to the other side of this...and the great thing is that we have each other to help! We would not be human if we didn't have both bad and good days as we make our way through. I will be glad when we can start complaining about radiation , cause that will mean we're done with this yucky chemo stuff!

Liz

NancyM

Well, here I am for the third time today...what a nerd!

I like what you said, JoMac about "I just have to do the best I can and sometimes the best I can do looks clumsy and messy." It made me think about young kids learning to do something for the first time, and whatever it is looks charming and cute to adults. Well, aren't we all "toddlers" at this chemo stuff? Why did we ever expect that we would be full on experts when we had no life experience with it? Gosh, I think we should be proud of our clumsy dance with chemo and how far we've come since day 1.

I also love the snowflake analogy. Due to chemobrain I had already forgotten it, however. D'oh! Snowflakes also make me think of purity and innocence....which goes along with being a kid, trying things for the first time! By this year's first snowfall, maybe we'll all be going back to the innocence we had pre-diagnosis.

Jen - I'm glad you had a good trip to Cape Cod. I have family members who live north of Boston, and I know that's a nice place to visit in the summer. My face has decided to behave, thanks for asking! I'm glad it hasn't become something for the medical journals!

Jenster

I myself think we're all brave. Being brave doesn't mean that we don't get scared or tired or sad. It means we do what we can do, and when we can't do anymore - that's okay. Quite frankly, I think we're all incredibly awesome!

An old neighbor of mine (old as in used to live here, not old as in age - lol) stopped by this evening. She just found out today that I had cancer and was going through chemo. She took one look at me, smiled real big and said, "You're so beautiful! I tried to imagine how you would look, but you look wonderful!" I laughed because I stood there in an oversized shirt, house shoes, no makeup, and a pink bandana on my bald head. Gosh, I miss her!! lol

Jen - your weekend at the beach sounds divine! I grew up by the beach in Southern California and I've been missing just sitting on a bench and breathing in the tangy sea air while watching the sun set. I keep thinking that would just make me feel so much better. But it's not to be. At least not this year.

Watson

Liz,
You hit it right on the head.
"Stumble to the other side of this."
Be it every three weeks, two weeks, puking or not: just stumble to the other side.
I love it!

Fi_in_oz

Hi ladies,

Well, what a day, up at 5am for the 5 hour drive to my closest radiotherapy centre, met all the doc's got my tattoos etc and peeked at the accommodation I will stay in each week, then 5 hours home got back just before 6pm. And yes, I drove myself all the way, mad-I-am.

Thank you to the "angels" who assisted the journey by clearing all traffic accidents, turning all traffic lights green and flipped the road work signs to go/slow on my approach.

Something very interesting came out of the appointments though. The doctors there are also questioning (un prompted by me btw) my Taxol treatment, I'm a double negative (ER etc tests) so... what's the point of doing Taxol which targets the hormonal side of things was their question.... its soooooo nice to have my thoughts validated and yes I'll be asking my oncologist to answer that question at the end of the week.


Thank you ladies for your thoughts and contributions, I confess I'm tired now and am off to bed, so please excuse me from replying in more detail for now.

Best wishes and good thoughts to you all

Fi

Analemma

Fi, I haven't heard that Taxol treatment is related to hormone status at all, did I miss something? I too am all negatives, and so Arimidex is not in my future, but Taxol was a definite from the get-go. As bad as all this chemo is, I'd do more if they'd offer it, just for another couple of percent of a good prognosis for non-recurrance.

So far, I feel ok today after Taxol #1 yesterday. I guess the aches and S/E's usuall start about day 3.... And I'll have the Neulasta aches tomorrow, too.

Brenda

Scout

I'm still at the bottom of the ocean, so I'm sorry that this message will be short. Good news...no more CEF! What they say about the 3rd one is true...except it hit me a day later than number 2.
See ya in a few days.

2frogs1princess

Just checking in with everyone. I've been in a real funk since my treatment got held last week. I'm feeling better now. Got back to work yesterday and it's good to get back in the swing of things.
Scout-I hope you bounce back easy this time.
Fi- I, too, have not heard that Taxol was for hormones. I get it regardless since I am ER/PR/HER2+. Arimidex after chemo too. I read in another post radiation referred to Camp Nukemboobies. Good luck at camp.
I'm enjoying everyone's posts and their take on things. Snowfalkes are beautiful aren't they?
Keep swimming girls!

~Mindy~

LizFL

Got some good news today. Went to orthopedist (I broke some bones in my right hand less than a month after mastectomy in a fall) and I am officially free of my cast. I stopped wearing it a week and a half ago because I just couldn't stand it any more, but it's nice to know it's healed and the doctor agrees that I don't need it. Plus...one less doctor to see...YEA!!



Liz

minerva

NS- thank you also for your thoughts on Peter Jennings, and your continued support and information for all of us.

Kimbe & LizFL- On your question about working, I only had the sleepiness from the Benadryl on treatment day and then felt fine the next days. I hope that helps but once again every person reacts different.

I had my new mixture of chemo yesturday and was pretty nervous, but everything went okay. I was so used to coming home and sleeping from the Benadryl and this time I felt kinda of energetic. Today I am just kinda tired and admit to sleeping in a little but it's not too bad so far.

NancyB-I agree when you said that we are like children learning something new. Every morning I wake up and wonder and then just go with the flow. I am a capricorn and it is hard a lot of the time when I can't plan things as I always have. My pat answer to everthing and everyone is I will let you know, as we don't always know from day to day.

Thanks again for all the wonderful posts, and the snowflakes!

LizFL

When is your birthday Minerva...I am a Capricorn too...born on New Year's Eve!

Maybe I will schedule my treatments for the afternoon so I can sleep when I get home!

Liz

Fi_in_oz

Brenda,

I'm not sure, some other research I did last night when I got home confused me even more, my appointment with my oncologist is friday, so I'll let you know what she has to say.

nosurrender

Fi- I have heard the expression that triple negative girls don't need taxol. Which means they are ER/PR -, Her2/nue-, and node negative.
That could be the confusion?
They USED to only give Taxol if you had a positive lymph node. It has nothing to do with your hormonal status. In fact, just the opposite. Taxol works better on ER/PR- girls because ER/PR- cancer responds better to chemo.

Unless I am missing something and am wrong- I have never heard of it having anything to do with negative hormonal status- only negative NODE status.

Many docs are hitting girls with the full monty nodes or no nodes. Personally, I think it is overkill unless your cancer was so aggressive they believed they needed the extra boost Taxol can give you.

At the last ASCO conference a paper was presented that A/C T is excellent treatment for women with positive nodes but they have inconclusive evidence whether it benefits women with no node involvement.

Good luck at your doc tomorrow!
Or is it today? Or Yesterday- when is Australia time compared to ours??? I know you all are in Winter right now- correct?

kimBe

I will try to remember to ask my onc on Thursday about the Taxotere-and then remember to post the answer....oh so many questions. and then trying to remember the answer. Am feeling pretty good tonight so have high hopes of doing well with #6 on Thursday.
KimB

Candle

I'm a July, 2005 poster, but I've been doing this for 15 mos. Drop in to see what I could learn here and decided to jump in.
Fi....Taxol is chemo, not hormone therapy.
Nosurrender......I started with A/C and was to do Taxol. Mets to bone while on A/C. Did radiation and tamoxifen. Mets to bone again. Am now on Taxol. And by the way, I was node negative.
Live long, your sister in the fight
Candle

nosurrender

Dear Candle,
I am very sorry to hear that you are fighting bone mets as well. Was this discovered by a diagnostic scan like a bone scan or PET while you were in the middle of A/C? Or did they do one first that came out clear and then do another and find that it had shown up while you were on A/C?

As I had mentioned, many docs are adding Taxol regardless of node status now. Some cancers are more aggressive than others and that can be seen in the path report.

I hope you are on one of the good bone meds. There are so many new ones that are almost eradicating mets to the bone. I hope you are having that WITH your taxol because I know many girls who have had great success with these drugs and have had clear scans and return to a stable state.
I know that docs always say if you are going to get mets- bone is the best place because it is the most treatable. I know that mustn't make you feel too great since you are in the middle of treatment for it!

I have four friends who also had their bone mets radiated with outstanding success.

This is one area where the researchers have found answers.
But I wish you didn't have to go through it.

If you are only on Taxol you should really look into the bone mets drugs. REALLY.


Good luck to you and I hope that you find a good combination that stops the Bone Mets for once and for all.
It is possible- I have seen it several times.
Fight for the BEST MEDS you can get!