Starting Chemo in JAN 2007

TPPJ

Amera, I saw that about EE today. What I found strange is that is that this is "news"??? Wouldn't she had known that from her first dx? So, are they saying her bone mets are ER+ but her initial BC wasn't? That seems odd.

Amera

From what I gather, her initial tumor was slightly ER+ but they didn't have anything to treat it with at the time (not sure of this). Her bone mets are highly ER+ although her doctors were expecting it to come back triple negative. Not sure I understand the whole thing.

I am triple neg and am wondering if mets can come back hormone positive. I certainly hope that is the case. The more treatment options the better. It is confusing, isn't it?

NOLONGERREADINGORPOSTING

Tina, if we had a post-treatment party in MI, could you come? Didn't realize you were so close by!!! BTW, anybody that wants to come can come; I mean, what state is more centrally located between Canada, the US, and both coasts than Michigan?!!!

Gee, I'd love to do one in Maine too.

Amera, I didn't know you were triple neg...I have also wondered if things change as time goes on. It is my understanding that cancer cells are very erratic, and it's kind of a survival of the fittest thing. I don't know if you can go from negative or positive, but it might be worth starting a thread somewhere, just to know. Could it go from positive to negative as well?! Maybe I'll ask my expert from UM tomorrow.

Mizsissy

IowaCindy

That's me with my mom's twin brother (he's always been bald) who's undergoing chemo for a bone marrow condition. The photo we have of Uncle Judd with my bald mom after her radiation and their bald dad is a family heirloom. Mama died in '95 of lung/brain cancer.

I always thought I looked like my dad's family but seeing me with Uncle Judd sans hair really showed me the blood line didn't skip.

Cindy

NOLONGERREADINGORPOSTING

Cindy,

I think I misread your email, anyway, I thought you looked much too young to be your own Mom!!! You are B E A U T I F U L ! ! ! You and your uncle look a lot alike, nice family.

You young gals can go bald, but NO ONE ever sees me bald, not even my husband. Sometimes at night when I'm hot and the lights are out, I pull my scarf off, for about 15 minutes.

Amera

Quote:

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Amera, I didn't know you were triple neg...I have also wondered if things change as time goes on. It is my understanding that cancer cells are very erratic, and it's kind of a survival of the fittest thing. I don't know if you can go from negative or positive, but it might be worth starting a thread somewhere, just to know. Could it go from positive to negative as well?! Maybe I'll ask my expert from UM tomorrow.

---

Yes Mizsissy, please do ask. I am really curious about this now. And good luck with your second opinion. Let's hope you get the same as the first. That will surely put your mind at ease.

IowaCindy

"Nancy, I had to chuckle on your comment about the grumpiness. I've been feeling like I have PMS, biting the dh's head off. I got really mad at him the other night when he ate my last piece of dark chocolate. I think it's the Taxol rather than steroids because I was on same steroids with the AC."

I've cried twice today. Once because the apple crisp I made tasted terrible to me. Couldn't cut it over the swamp water taste in my mouth. It smelled so good. I was hungry for something sweet for a change. Ugh. My daughter stopped by and I made her try. She moaned over it and said it was great. I felt better that I could still cook it even if I couldn't eat it.

And I cried at work today because for the third time my corporation has messed up my reduced work schedule pay total and over-paid me. It took a couple of phone calls and a fax and three people helping to find out I have to pay them back over $300. I'd rather know now but the reality of the third error just struck me wrong.

Why can I live with that 10 inch scar on my chest, the bald head and the fatigue but mess up something I think is still 'normal' like my apple crisp or my pay (I know, money's always a touchy subject) and I just fall apart?

It's not PMS. I haven't had a cycle since the end of January. Maybe it's the menopausal blues? Or lingering effects of Taxotere steroids?

Or is it a referred pain?

Well, my daughter is enjoying the leftovers of the apple crisp anyway. And I've paid back my corporation so we can start again for the new pay period. Moving on.

IowaCindy

Isn't that the day for the second opinion? Much wisdom and insight to those doctors!!!!!!!!!!!

Cindy

sharon56

i rather like being bald sometimes the wig was free and it itches . Slips alot , the turbans and scarves are more my thang ... the wig was for shopping at the local grocery store and driving around ... i fancy my collection of scarves .
Mizsissy : I am free in July after my rads , Sept after Labour day is my goal to go back to work if I do not have some hair by then its custom wig time .
Any nice spa's in the Detroit area for a weekend .? But we only have one vehicle and DH needs it for work . But we should all try and have a weekend sometime before Sept .

luckymel

Hi ladies! Just dropping in from the November group (always read your thread - I love you guys!!). In response to Nancy's comment about crying over the tuna salad, I wanted to share what happened to me today. I went for chemo, and had started reading a magazine in the waiting room when they called me for lab work, so I tucked my magazine underneath my jacket and chemo bag and left it all there in the chair. Not two minutes later I returned to find my magazine missing!! An elderly lady had come in while I was in the lab room, and the young man who came with her had evidently seen the magazine UNDER my belongings and thought it had been put there for his reading pleasure. It wasn't even a very good magazine, but it was MY magazine (at the moment anyway) and I could not get my mind around the fact that he stole it right from under my stuff. I was all about trying to rise above it, because actually, who cares? But I just kept getting more and more upset about it, and finally I couldn't keep it in any longer, and I took a big deep breath, and what I was going to say was "you NEVER steal magazines from the CANCER PATIENT in the CANCER CENTER, what's wrong with you, anyway?" And at that very moment, I was saved from making a huge fool of myself by the nurse calling me for my appointment, thank goodness! I was just ready to knock that guy's lights out! Thought I'd confess here - guess it's chemo fatigue (I'm nearly done) or chemo rage, or something. But I was sure feeling sorry for myself, and I'm so very glad I didn't act on it.

Hugs to you all, you're a wonderful bunch of women and I feel like you're all my friends - always read your posts. Take care,
Melinda

Nancyab

Melinda, Just because your not in Jan chemo group you are still our sister and always welcome to join in. I am so happy to hear that I am not the only "mad" woman. LOL. This stuff were all going through just gets your goat sometimes. Then again I thought I saw a Full moon the other night. Maybe??? Just Maybe we can blame the moon?

Lynn12

Hey ladies, guess what? I FINALLY wore my wig tonight. And where did I go you ask? Well, my niece had a sex toys party at my sisters house! Yep, me, my sister and about 8 23 year olds. It was quite a hoot! It wasn't just sex toys, they had a lot of lotions and bath stuff and such. The company is 'Athenas Home Novelties' and the women who do the party call themselve Goddesses. The girl doing the party started out saying 'I became a Goddess 2 months ago' I said to myself 'yep, me too, except I'm a BHOBG - Bald headed one boobed goddess'! Joni, thanks for writing that when you had your MRI, I told dh about that and we've been calling me a Goddess ever since! We're all Goddesses, right?

Anyway, I was glad to get home and get the wig off. I liked it and so did my sister, but it sure wasn't too comfortable. I'll wear it now and then but will probably stick to the scarves most of the time.

Bedtime for me, have a good night ladies!

TPPJ

Amera, I think you figured it out: EE's initial tumor was "slightly ER+". Of course things can fluctuate, so I suppose it could have become "more positive" as time went on. I wonder if through tumor marker tests or something like that (but no evidence of a new tumor or met), they can tell if your estrogen is raised and then put you on tamoxifen as a preventative. I think we need to start our own clinical trial!

The other thing is they say different labs come out w/diff. results regarding these things (ER, HER2neu). That is scary. How can that be? Incompetence? First day on the job?

Mizsissy, I'd love to do Michigan but not totally sure if I could...my kids are 6 and 10 and my husband travels a lot for business. Let me know if something gets planned and I can certainly attempt to make it. Never been up there. My son and husband were in Detroit for Wrestlemania this past weekend. Can't say I would go to Detroit for that event...

Amera, my sister in laws best friend, Alyssa, was treated at DF last year and she's our age and triple negative too. She's got a great, positive outlook, has never mentioned wishing she was ER+ so she'd have more "tools" to work with. I don't know that she's even researched stuff that in depth that she realizes that. I prob. read too much...she does not. But you know what... there's just no way to tell for sure who will/will not have a recurrence. We all have our good/not so good points with our individual situations. We have to do our best to not obsess. (Hey, I sound like Johnny Cochran!) (I must be feeling "steroid strength" right now... I'll have to re-read my own words when it's a not so good day.)

meliaanne

Amera,
I am triple neg too and just want to tell you that my onc doesn't think that is "necessarily" a bad thing. I know there are lots of postings on other sections here that it is, but my dr actually uses the word "cure" when he talks to me. And I don't think he sugarcoats anything. Sometimes I let myself read the triple neg board and I really can get myself into a funk about it, but I hold on to what my dr says. He has been very upfront, proactive, and aggressive in my treatment, which is what I requested. I hope you don't feel badly about the triple neg thing. The whole journey can be frightening, but I don't think the triple neg needs to make us feel worse.

Mizsissy, I thought I was the only one who wouldn't let anyone see me bald! Maybe I am not sooo crazy. Please let us know how your second opinion consult goes.

Sweet dreams all. I don't know what I would do without all of you.

Melia

TPPJ

Quote:

what I was going to say was "you NEVER steal magazines from the CANCER PATIENT in the CANCER CENTER, what's wrong with you, anyway?"

Luckmel, glad I re-read that. I thought you did say that aloud. I was CRACKING UP!

That is very rude. Nobody does that kind of stuff..he deserved to be told off!

skyedivine

Cute wig, Shorty!
Congrats on last Taxols TPPj and Mary. I have two to go yet. TPPJ, I think you are probably right that stretching out lighter doses was probably easier on you, symptomwise. Assuming we got the same total amount, that means I'm getting 3x as much for each infusion. Ohh well, I'm halfway into it so I just go with the flow. Literally.
Nancy, I felt so much better that I wasn't the only one freaking out over food thieves, LOL. I do think it's the Taxol. I'm normally pretty placid. But hey, you don't mess with a chemo gal's chocolate or tuna salad!
As for people telling me "I look good," I admit I've been either staying at home or going places I won't likely run into people I know so that hasn't been a problem. The funny thing is, although I'm bald and have put on five pounds, in some ways I do look better. The chemo has cured my chronic sinus so I don't have the dark eye circles I used to, and also the scaly eczema that goes along with rosacea so much of my face is smoother than normal. However it has also aggravated the rosacea on my cheeks, which still shows through my makeup and that has prompted a few comments about how I "still have good color." I just smile. My onc thought the chemo would get rid of the rosacea too and it did with the stuff in my eyes but not on my cheeks.
BTW, I'm still waiting for the results of the MUGA scan I had last week and that is making me nervous. I can't help thinking what if my heart is not good enough for the Herceptin. I do have a murmur. I'm going to call tomorrow if I don't hear by morning sometime. Should it take a week to get test results? - Skye

skyedivine

Melinda, welcome and thanks for posting! That's a great story about the guy stealing your magazine. I almost wish you had gotten to say it...it got me mad at the guy just reading about it! Like Nancy, I'm glad to know I'm not the only one whose mood is swinging a little. - Skye

skyedivine

Sorry to post yet once more but on the positive/negative dx coming out different from different labs, I think that is true. My onc had mine sent to two different labs, he said that otherwise he wouldn't trust the results. Both labs did get the same exact results but if they hadn't, he would have sent them to a third. - Skye

Caya

So I'm still up, past midnight - I took Tylenol #3 a couple of times today, and it did help with the Taxotere twitching, but I will ask about Mirapex..
Tina - I had lost about 15 lbs. last year before diagnosis as well between diet and exercise - I joined a ladies only fitness club called "Changes for Women" - it's a circuit club like Curves - a 7 minute walk from my house and I loved it - i went 4 -5 times/week. Well of course since dx I had to quit the club and put back on the 15 lbs. After chemo as soon as my onc. says okay I am really going to try and drop the weight. and yes, BC and chemo are GREAT EXCUSES for getting out of doing the dishes at big family dinners.
Mizsissy, good luck with your UM expert, I hope he/she has great news for you.
Cindy- you and your uncle look great.
Shorti - your wig looks great. I don't wear mine at home unless someone is coming over that I don't know - all the neighbours and neighbourhood kids have come by and I wear these little cotton caps with a stretch lace band sewn aroung the bottom that I bought at a store called Fashion Wigs (bought my 2 wigs there too) - it's on Wilson Ave. just west of Bathurst. You could stop by there on your way to or from your rads at Sunnybrook, it's not far. The owner is a lovely woman who tells me most her clientele are cancer patients.
Melinda from the Nov. group - chime in anytime, you sound like a great gal.
Lynn- okay I laughed so hard re: BHOBG my DH came running into the office to see what was so funny - OY!!!
Amera and Melia - your say triple -,I say triple +, - negative, positive, let's call the whole thing OFF - I wish we could, but let's be as positive (no pun intended) as possible, and remember that there are new discoveries every day - just be as aggresive as we can be with our treatment and remember that there are more long term survivors than ever before.
Skye - good luck with your MUGA scan. I will have another one after chemo is over for me (May 10th) and then will also start Herceptin.
My mood has been swinging a bit too the past few days, it's always something.
I think I've said enough, good nite ladies...
Caya

viddie

Hi,
Happy Birthday Joni!
Haven't had a chance to read all the posts yet.
I went to Dana Farber today for a second opinion with a surgeon. She was great. I will have a bilateral mastectomy after my 12 weekly taxol/herceptin treatments, sometimes in the beginning of August. I will also have reconstruction at the same time. I need one mastectomy and the other one will be prophylactic. She agreed with me on this.
I already had a lumpectomy, but there was a mistake in the pathology report at my local hospital. DF found another piece of DCIS in another area of the same breast that my hospital apparently missed - now it is considered multifocal.

Is anyone who is getting taxol getting herceptin at the same time? Apparently I will be getting both of them together for 12 weeks in a row- fun----
Busy couple of days!
Good luck tomorrow, Mizsissy
Viddie

Angelflight

Chemosabe March Cruiser Here
I'm with the March cruisers and have a question for you ladies here??????
I had a full hysterectomy done 15 years ago and have already been post menopausal before my bc. Since I'm ER/PR+ I will be doing Armidex after chemo. Does anyone here know if I will still experience any of the symptoms of menopause like the hot flashes even though I had the surgery years ago???

Thanks,
Angel

robertin

I have a question about Taxol. Does anyone experience a rash? Yesterday, day 8, I noticed red blotches on my fet and near my tumbs. They itch. It's nothing major, but I know they look for rashes during the chemo. So, should I worry 8 days later? I hate to bother the doctor, unless I really have to.

NOLONGERREADINGORPOSTING

You either lose your temper or cry...I am SO ashamed of myself. I've lost my temper big time twice in the past two days. I feel like a virtual witch.

The first time was screaming at the kind secretary of the doctor who is going to see me for a second opinion. She had talked me through it, was sympathetic about my oncologist and his dept (she knew him), and was intelligent, kind and talkative. But she refused to make an appointment until I had provided three years of mammogram records (& films), film from my MRI (from a different hospital, some distance away), complete reports from my local hospital, AND the actual slides from all my pathology reports. I turned into Hercules Woman, making calls here and there (and getting answering machines that never responded), had some success in some places, failure in others, and when all else failed, hopped in my car at the end of the day and headed south. In a couple hours, I had my car filled with films, slides, and reports...and she still hadn't made my appt. I had called three times, each time she was out to lunch or on the phone and wouldn't talk to me, and I'd get a second hand message from another sec..."fax everything" I don't have a fax machine, and how can you fax slides? Anyway, FINALLY I talked to her at about 4:30 pm, and she told me she had everything EXCEPT my chemo record. The one person I didn't want to call was my oncologist...it would surely mean FUTURE TROUBLE. I told her I knew exactly what I had taken...taxotere plus cytoxan, but my word wasn't good enough. She said, "Most people don't start with taxotere.." I told her I had spent two weeks arguing and consulting with several doctors IN ORDER to get Taxotere, I knew what I took (not good enough). I told her I had the carbon copies of my chemo prescriptions. That wasn't good enough either. Fax them. They were at home, a 70 miles round trip to my husband's fax machine at work...so I started screaming at her that I had performed miracles, that I jumped hurdles, but this last hurdle was too much!!!!

I felt like such a TOTAL CRUD for screaming at people who were trying to help me.


She finally agreed to make the appointment (the only time was at the same time I had an appointment to take my aging cat, who is quite sick, to the vet). She told me to juggle the vet appt.

My vet's, who is wonderful man and very busy, couldn't juggle the appointment, understandably. Bunky is sicker than I am. I called my husband at work, and he had an important meeting at that time he couldn't move, so he couldn't take Bunky either.

So next day I called her and told her I'd have to move my appointment. She told me the next appointment would be until May 27 (done with rads then!!!). If I need more chemo, it should be before rads.

So I called the vet's office back to try to resolve the conflict, used the magic words, "I have Breast Cancer." They were very sweet, juggled things around for me. I'll drop off the kitties early, go to my appt, and come back. Why is it everybody is so nice to you OUTSIDE the onc's offices, but not nice to you there?!!

As it turns out, DH managed to get out of his meeting, again, using the magic BC phrase, so he'll accompany me to both the vet's office and the onc's office. Good, because I am so ashamed of my behavior, I need to have someone else along to represent me....

Geez.....

Mizsissy

skyedivine

Viddie, I'll be having Herceptin with my last two Taxols, should I have passed my MUGA scan. I don't think the Herceptin causes additional se's, just means another half an hour in the chemo chair. I think it multiplies the effect to have them together.
Robertin, I think you should report any unusual rash while on Taxol. Allergic reactions are most likely to show up during the infusion but I don't think they are limited to that since the substance stays in our bodies. As for me, I discovered tenderness in my lowest rib bone so I'll be reporting that. Good luck with the rash! Cold but sunny here in SE Wisconsin today. - Skye

skyedivine

Mizcissy, sympathy on what must have been a frustrating situation. And having a sick pet only adds to the stress. I think we are totally justified in playing the bc card whenever it will help. Hoping your kitty is soon better.
I need to get out myself today and run errands, and am hoping to attend Maundy Thursday services tonight so it's a wig day. Lynn I forgot to send supportive kudos to you for your maiden wig voyage. My biggest problem with mine is putting glasses and sunglasses on...the glasses have to go partly under the wig and then it gets pulled away from my face if I'm not careful. Not TOO fake-looking! I know one lady who used headbands to keep hers in place but they hurt my ears. Hey, we would all look real cute in those bunny-ear bands right now! :-) - Skye

belindajo

I just happened to drop into this board. I finished chemo on March 8 and am on the December board. Robertin, I had a horrible rash on my face and neck after Taxol. On one occasion I had huge red whelps! It was horrible. The rash would occur a week out from treatment. For my last treatment, my onco gave me a Medrol dose pack to take when it occured and it helped although a week after finishing that (3 weeks after last treatment) I developed acne on my face and neck. He then prescribed me tetracycline. I am still taking that and it has gotten better. I am hoping all these side effects disappear soon.

Good luck to you all and hang in there!
Jo

TPPJ

Skye, dont' worry about the MUGA results. I'm sure you'll be fine. I was told at one time I "may" have a murmur, but apparently I don't. I've had two echocardiograms now (is that the same as a MUGA?) and all have been fine. Someone else mentioned should they have the heart test before Herceptin. Answer is yes. Unfortunately, I slipped through the cracks and I knew it at the time. I had my echo done after 2 Taxol and Herceptin tx's. So if there was an issue, they couldn't say for sure if had been the Adriamycin or the Herceptin that caused it. My onco. wasn't that worried. Turns out my heart function IMPROVED! Ha-ha! Cancer drugs are apparently very good for me.

TPPJ

Rashes on hands/feet were mentioned on my Taxol info. sheet from my doctor. So, yes, def. a common s/e. Not sure if it's a critical one, but def. something to mention. I got terrible hives on my face during Taxol that makeup wouldn't cover. Funny, I didn't get it the last tx. Maybe I've become accustomed to it. I did get some eczema on my hands, but I cleared that up on my own w/Eucerin type moisturizers.

It's funny, I've told you all I was virtually s/e free on Taxol. I guess I did have some stuff but nothing that bothered me too badly. I guess the only thing I cannot handle is vomiting. Speaking of which, Amera, I was so surprised that Dana Farber didn't give you Emend to start with (I may be repeating myself here). I mentioned it to my chemo nurse yesterday and she said there was a dr. in their practice that doesn't prescribe Emend intially either. I was like "I'm so thankful my dr. did!" Also, I'd be irate if I knew it existed and they were holding out on me. I can't think of any logical reason why they wouldn't just give that stuff from the get go. I think I may be repeating myself here. Hold up two fingers if so!

TPPJ

Viddie, glad to hear you are knocking out all that surgery in one day. It's so much easier.

So your cold didn't materialize I take it? That's good.

I did Taxol and Herceptin simultaneously for 12 weeks. Flew by because every time I turned around, I was back in the chemo chair. Went quicker than the 4 A/C tx's over 3 mos.

NOLONGERREADINGORPOSTING

Boy, you gals had a posting gala last evening. I went to bed early. So many questions & issues!!!

On the positive/negative conflicting result thing...the 2nd opinion onc's secretary told me they needed the original slides and so forth because so often, patients were VERY OFTEN misdiagnosed as positive or negative!!!!

When I read the path reports myself, I saw that on one the tumor was considered mildly aggressive, on another, strongly aggressive. I think interpretation can be very subjective.

Second opinions are a legal right, and I think some of you, who aren't certain, should get second opinions. What we don't want are recurrences!!!

I have several close friends with recurrence, and all I can say is nothing makes me so sad as being unable to help or do anything. But sometimes, I guess, despite all we can do they will happen. We need to be spiritually strong and ready to deal with whatever happens, even the worst. Like Mary said, we must be able to accept things we have no control over.

Mizsissy