Starting Chemo in JAN 2007

Hello, sure hope everyone had a lovely Easter.

Mizsissy I'm glad to hear that your nephew is doing better, what a relief for you and your family. Mary, I'm saying prayers for your BIL, Ken.

Lynn, my fingernails have several white lines running across them, one I think for each chemo. I have heard that if you soak your fingernails in cold or ice water it is suppose to lessen any affects to them, but it doesn't seem to be working for me. I think that is for the taxanes drugs though that it works, and I'm not taking either Taxotere or Taxol.

Rebecca, I laughed so hard at your "rooster" story, you should make that an annual Easter tradition. Your aunt's story was sure a good "Positive".

Caya, hope your daughter is having a delightful birthday, tell her that all girls born in April are very bright!!

Shorti, loved the video, and yes I'm into Classic Rock or country...go figure I'm from Calgary.

Amera, I'm always tired too, especially the week after chemo. I get the "weepies" even though I have not had a period since my chemo started. I get them around the time I would normally have had my cycle. It's bad enough we have to have chemo, but all the other rotten things that this stuff does to our bodies is very rough to get through.

Viddie, hope your blood counts go up. They don't give out the shots too often here in Canada. If your counts are NOT in the right zone, they make you wait a week or sometimes more for your next chemo.

Melia, Vicky, Nandy where are you guys lately? Hope you are all well.

If we decide to meet in Ontario, that is fine with me, just let me know where and when and I'll try to get there. Sometimes travelling in Canada isn't so easy in the summertime, as we really only have a couple of airlines that you can rely on. Air Canada & Westjet. The others seem to always go belly up.

We are suppose to get another 15 cm of snow tonite...I want SPRING to come.

Love to all.

Joni

ps: I have never seen the Sopranos, of course, I don't watch TV very often, so there you go!!

I was going to have it under my arm and my breast but today my doc said I wouldn't need it under the army if she cleaned out my lymph-nodes. I'm not sure what that means but I will ask as soon as I can. Doe anyone know what that means?

NO, I'VE NOT HEARD OF THAT BUT I'M NOT DOING RADS. DON'T YOU GET TATTOOED WHERE THE RADS ARE SUPPOSED TO GO AND THE TATTOO IS BASED ON WHERE THE TUMOR WAS? I'M WONDERING IF YOU WERE NODE POSITIVE, THEY MAY HAVE ZAPPED THE UNDERARM AREA? I'M SURE THERE ARE A LOT OF GIRLS HERE WHO WILL KNOW...

Just checked out the video. Funny! Can you imagine what the neighbors thought?

Hi Ladies,
Shorti I'm a classic rock fan, but country...not so much. Although I do love John Prine, who is more like folk country. In fact I listened to his "Missing Years" album over and over during chemo today. Speaking of which, it was number 7 of 8. I had 3 books with me thinking I could read, but to my surprise they upped the Benadryl load again to 50 mg because I was getting my first Herceptin. I was out for four hours again! I woke up twice long enough to go to the bathroom and have a very fast snack. I must say it made the five hours in the chair go faster. They said they will cut it back down to 25 for the next one, and then to z. And of course I was next to the lady who had the odor problem last time but this time a relative was with her rather than the nursing home aide, and she was fine! Sad implications there regarding nursing home care. But here is the best story. On my other side was a young woman I've kind of gotten to know who is usually there with her nice sister. The woman is only 30 and has colon cancer and she is getting chemo and rads at the same time! It's very hard on her, none of the anti-nauseas work... even Emends make her sicker. She was in bad shape as you may imagine. So I started telling her and her sister about our code words such as turtle faces. The sister did her imitation of a turtle face and it was so funny that the woman and I both burst out laughing. The nurses were amazed and pleased that she was laughing that way. So this group's humor has spilled out and really lifted somebody else who needed it. - Skye

Jan, I'm thrilled at the idea of your coming for the get together. It seems that geographically, we are honing in on Toronto or close by, like Stratford. Most people don't want August; what do you prefer, July or September? I'm leaning more towards September, allowing for PLENTY of recovery time.

Wow, Mer, what a violent country we live in!!! The first I heard about the shooting. Troy is ritzy...one of those super expensive burbs. Well, even some of the wealthier burbs have their criminals I guess.

When I lived in Ann Arbor we were treated to regular episodes of Cops right from our bedroom window. Police with guns out, guys walking backwards with hands up, that kind of thing. We moved. Pinckney is about the safest place I ever lived. I can go for walks by myself at midnight.

My first rad was very anti-climatic. They told me the actual rays are a MILLION TIMES STRONGER THAN XRAYS, but all I got was xrays today. Geez...

Mizsissy

Good evening ladies,

Actually had a nice day here - my younger daughter had her 18th birthday party this afternoon, about 15 kids came over for movies and cake - it was nice.
Joni - I showed her what you said about April born girls being smart - I never knew that, but I can tell you Cassie has always been smart and mature beyond her years - she is going to graduate grade 12 with a 90% average. We are very proud of her.

Mizsissy - the August 10 -11 weekend is a ? for me - I may be out of town with my DH on business, and won't know for awhile. Sounds like Danny is going to be okay, although I agree with you about that 6 floor walk up arrangement.
Viddie, Amera - Yes I agree about the the chemo effects being accumulative - this Taxotere has really knocked me out- tush rash, bladder infection, really tired.
Mary - Does not sound like a great day for you - I hope Ken your BIL will be okay. You work in Troy? Anywhere near the Somerset Mall - I have a ton of relatives in the Southfield and West Bloomfield Hills areas, and we have stayed in Troy for some weddings and Bar Mitzvahs...
Skye, how was your first Herceptin? Any reactions? I will probably be having my first one sometime in early -mid June - Did you have a MUGA or echo recently? I had a MUGA in November before my mastectomy, it was fine. I don't know the actual level, but I will ask next time - My onc. said he will do another one after chemo, before Herceptin.
Jan - Where in Toronto does your aunt live? I am in Thornhill, just north of the city's Willowdale area.
Tomorrow morning I have an appointment with a big gyn. onc. to talk about taking out my ovaries - anyone else done or doing this? I had a hysterctomy 3 years ago - took out my uterus and did a bladder lift - left in the ovaries - my mother begged me at the time to take them out, but my gyn. and I decided to leave them in as I was only 45 at the time,and she said I could still be 5 -7 years away from menopause, and the estrogen was good for me - so of course here I am with highly ER+ (90%) BC - I guess I should have listened to my mother!!!
Hope everyone else is having a quiet evening.
Caya

Rebecca, you're right, there are many people with whom I would not want to trade places. My heart goes out to your guy with bone cancer.
Caya, so far I haven't been able to tell any difference with the Herceptin. They did give me the extra Benadryl and also some Tylenol because of it but I feel pretty much like I always do Day 1, and expect I'll be able to drive myself in for the Neulasta shot tomorrow. I did have a MUGA last week and my score was 71 which they were very pleased about.
I did ask my onc why some people get weekly doses of Taxol for 12 weeks and others get four doses every other week. He said the 12 week plan is newer, and although it involves lower doses, you end up with more Taxol altogether. He said that the 4-dose plan is the "classic" treatment, and he is a classicist and waiting for the results of a study to see if it extends survival rates. I believe he said the study was B-31 (sounds like winning Bingo to me). So what it comes down to is the oncologist's personal preference at least in my case.
I also have another worry. I noticed last week that I have a very tender spot on one of my left ribs for no reason, and there seems to be a mass of some kind
over it. I showed it to the onc and he looked rather grave and said if it's still there after the chemo (last one is april 23) we will do a bone scan. Then he went back and looked up my "score" for the ER,PR,HER analysis and reminded me it was 9, while "acceptable" is 2. Of course my mind was not sharp enough to ask more or pursue it at the time but tomorrow I'm going to try to get more out of him as to whether I should be really concerned. Remember, all my pre-chemo scans including bone were clear. Can you grow a new tumor during chemo?
On the get together, I just don't know yet whether I'll be free to come or able to afford it, but when you set a date I'll tentatively pencil it in and then see. I would so love to meet everyone in person. I think Sept. is best for max healing too. - Skye

Yes, John Prine rules! I have not have the privilege of seeing him in concert, have you? It's a goal of mine. I've only seen him perform on PBS. - Skye

Caya - I don't know Toronto well enough to tell you where my aunt lives, even though I have been to her apartment several times! She is in the city, but I can't remember which area. I have an uncle there too and a cousin in university. The rest of my family is in Ontario and Halifax. We are the only ones in the US. I am hopeful that I will get up there this summer to visit her, but she's taken a serious set back this week and at this point I'm not sure if she's going to make it.

Interesting about removal of ovaries. No one has talked to me about it. I knew it would probably happen if the genetic testing had come back positive, but it didn't. There's no way you could have won making that call when you had your hysterectomy a few years ago. Sure, it seems easy with hindsight, but you would have also left yourself open to other problems if you'd had them removed - and no one could know what lay down the road for you at that time.

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There's no way you could have won making that call when you had your hysterectomy a few years ago. Sure, it seems easy with hindsight, but you would have also left yourself open to other problems if you'd had them removed - and no one could know what lay down the road for you at that time.

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Caya, I agree with Jan. You never know what is going to happen, so do not beat yourself up with "what ifs". When you are faced with a decision you have to just make the best decision you can at the time. Why do they have to take your ovaries? Why not just suppress function with Zoladex, or give the hormonal therapies? I for one would hate the thought of another surgery (although I too have one in my future for my reconstruction)

On the subject of reconstruction I am going today for a "pumping up" session. YUCK. 100 cc needle sticking out of my chest always unnerves me, no matter how nice my PS is. Hope I am not too sore...Tx #5 tomorrow. I am very irritable and emotional the last few days, and I think it is anticipation. My last cycle was pretty bad, and I have not fully recovered yet. My blood counts are taking a slow but steady nosedive (I keep a graph), and my RBC and hemoglobin are pretty depressed. Someone put it very well yesterday about the fatigue, comparing it to feeling like it is the middle of the night ALL THE TIME. That totally describes it. My eyes are forever scratchy and sensitive to light, and my mind is just a bit fuzzy around the edges. I fear that I am becoming an absent minded professor for real

Anyway, have a good day everyone...I have to head out to class pretty soon.

I don't know John Prine. I am not a country or rock person. I am immature for 41 I think: I listen to hip hop. Old school, new, doesn't matter. Just had my 10 yr. old download some great songs for treadmilling, Jay Z, Beyonce, Eve. I do like John Mayer...he's not hip hop.

I think it is so interesting to see how kids react to the scarf thing. My daughter's kindergarten friend that she carpools with could not stop staring at me the first time I saw her with a scarf on - she was totally speechless too. But, when I went in to my daughters K class for her birthday not one of the 12 kids said a word about the scarf other than to say it was pretty. I think the teacher might have prepped them for me. None of the kids in my 3 year olds day care class have even noticed as far as I can tell.

I also go back/forth on BRCA testing. The only risk factor I have has being dx'd young with it. I'm not an Ashkenazi Jew, I have no family history... my gyno. said do it and if +, ovarian removal is a "no brainer". However, I'm afraid if God forbid I was +, I/my kids could be discriminated against for insurance down the road. I don't trust that this can't happen. Any input on this subject anyone?

I was never told to see a genetic counselor before my BRCA test. I just signed the piles of consent forms in front of me and put out my arm for a blood draw. I had mine the *day* I was diagnosed and before I had to drive into Boston to get my MRI. Talk about a whirlwind. I was in shock.

I *think* I would've gone ahead and gotten the test had I had more time the think about it. I have two daughters but no *real* family history (although as I've mentioned, my grandmother was dx at 93 but from what I've been told, that is not considered a risk factor because of her age).

I'm almost glad I had the test without too much thought. The way things were playing out back then, it would have just been one more thing to think/stress about. I was so oblivious, I completely blanked it out until I got the results. I am negative, thank goodness, but honestly, that doesn't really decrease my worry all that much for my kids as there are plenty of families with a history but negative BRCA tests.

regarding BRCA testing: I never saw a genetic counselor either, nor was I advised of any adverse insurance consequences. I thought it was illegal to do that...or is that legislation that is still in the hopper? hmmmmm

In any case I am glad I did it, if only for peace of mind. As a young Ashkenazi Jew there was a distinct possibility that it would be positive. Thank goodness it was not, for my sake and for my daughters'

I am just back from the plastic surgeon. Blech was a pain. He did write me a percacet prescription bless his soul, which is more than my onc has offered me for my pain. Of course as I was sitting there in the waiting room my phone rings and it is the school nurse. My oldest is in her office crying her eyes out with a stomachache. I was ready to leave, but the nurse told me outright that I was to take care of medical stuff FIRST and that she would take care of Frances for me, even if she threw up. Nevertheless I paced the waiting room, waiting for my turn. In the meantime I made an appointment for Frances to go to the Dr to get checked out (waiting room of sick kids AAAAAAACCCCK!!!) When they were done expanding me, I was ready to jump out of the examination chair so I could get to my poor Frances. The PS and his lovely assistant made me wait in the examination room for 10 minutes after the procedure which probably a good thing, having 70cc of saline injected under your muscle is enough to make anyone woozy. I was nevertheless quite agitated by the time I got out of there.

So I finally get to the school, and there is the nurse telling me that Frances was fine, and she went back to class....SMILING AND LAUGHING no less. I was, and am sure that it was anxiety, so the nurse called her down to the office so she could receive hugs and cuddles and then I went on my way for my much belated pickup of my son.

What a ride.....and now I have to turn around and pick Frances and Ana up from school for real. On the plus side, I called the pediatrician's office back and pleaded my case, asking to be brought in with the well kids rather than the sick ones, and they very nicely changed the appointment. I swear I feel like my life is a sitcom...if I do not laugh I think I would cry. (Smiling now!)

Cheers y'all....check back in later