Starting Chemo in JAN 2007

Hi all,
Lynn,
Thanks for your advice about using Word. It works like a charm. No more losing writing and being able to respond as you read is great. How are you feeling?
Melia,
I also had my 4th taxol/herceptin today. I told my oncologist about all my bloatedness. I gained 3 pounds in 3 weeks. I do not want to gain 12 pounds in 12 weeks!! She said she would lower my dosage of decradron. I hope I do not get any s/e from the lower dosage. I will see what happens.
My treatment was at 12:00. I slept there and slept when I got home until 7:00. Of course now I am wide awake. I plan to take an attivan in a few minutes.

My radiologist at the mammography found mine. After she showed it me on the ultrasound, she put her hand on the area, and I felt it also. I felt a little stupid for not noticing it before. It was IDC 2.2cm. I decided to have a prophylactic mastectomy because I have been having mastectomies every 6 months for calcifications, and ever nothing showed up. Also, pathologist read my report wrong, only to be discovered by a 2nd opinion. I originally had a lumpectomy. Now I have to wait until after my treatments to have a mastectomy. Apparently my surgeon did get have clear margins on the area that has DCIS that the pathologist misread as benign. I do not want anymore mistakes so I am using “peace of mind” as my reason.

Lynn,
I copied your idea and we stopped for a Cold Stone Creamery on our way home from chemo. Delicious!!!! Thanks for sharing.

Caya,
Congratulations on finishing chemo. Another milestone. I am glad your nurses and onc loved the cookie baskets.
My UTI came out positive, but very wimpy, as my oncologist put it. Whatever, but I am still on Cipro for a week. I feel fine now, except for fogginess from benedryl and attivan they put in my IV. This too shall pass.

Viddie

Quote:

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She also suggested in jest that I take off my scarf and bow to them when they stare too much. LOL. I got a few good laughs today.

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lol viddie! I have been tempted.

Regarding people “ignoring” the change in my appearance: working at a college, and teaching three classes a semester (that is about 65 students every 4 months) it is inevitable that I run into former students. I am fond of my students (and vice versa) so they often stop me to talk. In this entire semester I have only been asked by TWO former students about my scarf and my health. They stop me, we chat and they move on. The two students who did ask were very awkward about it. One of them said “Hey Dr. S. what’s with the scarf?” and the other just said “you look different”. IMHO most people are hesitant to ask personal questions during a casual encounter. I also think that a lot of people are just naturally clueless and will accept changes in appearance (like a scarf) as a personal quirk or fashion statement….they will not like to assume that something BAD has happened and thus do not think to ask. On the other side of the scarf, however, we feel like we have CANCER PATIENT written in large purple letters across our foreheads and are surprised that others can not see it. I think that people are blind to things that they do not like or can not accept, and that it is nothing personal…just a coping strategy. The world can be a scary place if you do not cushion yourself somehow.

I found my BC myself during a self exam in the shower. I was always a bit erratic about doing it, but I did do it. I wish I were more diligent, maybe I would have found it earlier. When it registered on me that I had actually found a lump that should not be there I called the Dr for an appopintment. Had to wait 6 weeks for that (UGH) then another 4 for my mammo….which was my very first mammogram because I am considered to young. The radiologist saw it right away (along with another area of calcification that looked suspicious), gave me an ultrasound on the spot, and advised me to get a surgeon FAST. From that point it was very fast….I had the mammo on 12/6, by 12/22 I was in the operating room. They tried to biopsy the other calcification, but were unsucessful...I will never know if it was another tumor or not.

Hope everyone had a good night..I had an awful hot flash at about 4AM and paced the house for a bit. YECK. I find that the thing that helps the most at night is to have moving air in my bedroom. My ceiling fan is my friend

Oh…and for Rads after mastectomy…here is a link to an article:
http://theoncologist.alphamedpress.org/cgi/content/full/7/6/539

the bottom line is that it is very controversial, but some studies outside the US have shown significant benefit. It is unclear if this benefit would be the same for patients here IN the US because of differences in surgical practice involving removal of the axillary lymph nodes. Basically in the reported studies they removed fewer nodes, and recurrences were generally found IN the remaining nodes in patients who did not receive radiation. In the US the tendency is to remove more nodes during the dissection so it is unclear if the radiation would give any additional benefit. My radiation Onc told me that these studies are currently being replicated here in the US with results due out in the next few years.

YIKES I went on and on!

Later my sisters!

Good morning ladies,

Well it's the morning after my last chemo, I feel pretty good. Glad it's my last days of decadron, I hear you Viddie about the weight gain. I'm glad Amera wrote in that she's down about 7 lbs without really even trying after her last chemo. Must be the wonderful steroids. In a few weeks when this last chemo is really out of my body, I think I am going to start doing laps at a pool. I heard my onc. tell another woman in the chemo room yesterday that swimming is one of the best exercises for BC patients - aerobic, good cardio, and no pounding on the pavement or treadmill to hurt any bones, feet etc. I always liked swimming, what I hated was the fact that it took 2 friggin' hours for my long curly hair to dry afterwards - well, I certainly won't have that problem this summer, will I girls? (lol).

I don't think they give us steroids when on Herceptin alone - Skye, Tina - I think both of you are now on just Herceptin - are what are they giving you? I think my onc. mentioned Benadryl?

Rebecca and others who mention turtlefaces or no response when seeing us in scarves or other BC headgear - I agree that most people are nervous, embarassed and don't really know what to say - I don't think they mean to be rude, but they probably realize we have some kind of cancer (hair loss is probably the most visual symptom), and are at a loss at what to say.

So I'm going to try to get some work done this morning, I know I will need to have a post-chemo nap in the afternoon.

On a totally different subject, we are having a terrible problem with bees and wasps flying around our backyard, mostly in and out of wooden deck. DH checked, there's no nest under it, he thinks they are just soaking up of the sap from the wood. He's going to treat it with Thompson water sealer- but does anyone out there have any other ideas of spraying the deck and even the back of the house with some kind of natural organic pesticide? Otherwise I will call in a pesticide company, but I think most of them use harsh chemicals.

Thanks
Caya

Hi all - just read through all the posts and now my mind is blank!
Caya, congratulations on finishing!
Amera, what kind of dog did you get? Good news about the weight loss!
Melia, my cancer what found during a routine mammo in Sept. 2005 was OK. The doc saw calcifications, then did magnification views and saw a suspicious area near the nipple. I've wondered if they looked at my pictures differently because it was the first year after my mother's diagnosis. I'm not looking forward to going again in the fall.
I'm waiting to get my "spark" back. I'm doing OK, feeling OK, but just don't feel like myself. I guess so much has happened that it may take awhile. I don't feel the same drive at work, although it's good to be back. I'm realizing that I can't spend all my time worrying about my kids - I have to take care of myself - I'm just not sure how! After all these years of focusing on everyone else, what DO I want? Guess I'll just have to be patient.

Caya, no pre-meds with Herceptin. : )

Viddie and Melia, I gained a pound every two weeks or so during my 12 Taxols. I've lost that now though...five weeks off Taxol. So don't get too discouraged. I know it's rough, Melia, to see the scale go up after having a substantial weight loss a few years ago.

RobbinJaye,

I knew there was someone on this board what wanted her . back...just couldn't recall who. I was 41 in December so I guess I'd be early for menopause. It was nice not getting it. I didn't miss it. I did have hot flashes, but only when on Taxol. They stopped as soon as that stopped. And haven't had any since I began Tamoxifen, which is unusual I hear. Supposed to be the major s/e of Tamoxifen. I'm very lucky...I haven't gotten most of the s/e's they predict for any of the drugs.

Mary, sorry about your BIL...that IS tough news to take. Life is hard.

I did get a little redness around the drain site on my abdomen (TRAM flap scar area). I think it got jostled around and irritated. Maybe if you tape it down more securely. I had mine in 3 weeks, which was excessive...

Good Morning,

Jan, congrats on your last chemo, hope it goes well!

Well, today’s my last day on decadron, can’t wait to be off of them for good, hopefully I’ll lose some weight without trying like you Amera.

Mel, thanks for the info on Spanx, I might order a pair or two.

Viddie, Cold Stone Creamery ice cream is such a nice treat after spending the day getting chemo. I’m so glad DH thought of it! I certainly won’t go after every radiation (yikes), but maybe for milestones. First, middle and last.

Rebecca, thanks for the article on radiation after mastectomy. I don’t have the eyes to read it yet, but will as soon as the fog clears. In my case, although I have negative nodes, the ILC was multifocal, 7.5cm and in all four quandrants of my breast. The Surgeon, Onc and Radiation Onc all felt strongly the radiation will benefit me.

Mary, sorry to hear about your BIL. Hang in there, we’re here for you.

Ok, so it’s been a week since I mailed the packages. Who hasn’t received theirs yet? I believe the list is the 3 Canada girls and Mary, anyone else?

Am ready for a nap already, I’m hoping this is the last day of the toxic fog. DD is coming home tomorrow to help me shop for mothers day.

Have a nice day ladies

Good morning again ladies, getting ready to leave LaCrosse but wanted to post quickly.
Caya, you won't get steroids with Herceptin, thank goodness, but they do give Benadryl sometimes with the first one to make sure no allergic reaction. Now I don't get anything with the Herceptin. I can tell the steroids are gone but they left my face just a bit puffy. I've stopped gaining weight and might have lost a pound or two. Need to exercise as soon as I can.

Melia, my lump story...I was 8-9 months late for my annual mammogram due to having 2 books come out with signing tours within that time. I knew I had a lump but I've been prone to cysts for years and this felt just like another one of those, figured I'd need to get it drained. Well I was right but my OB found a second lump above that one, she was suspicious and ordered an extreme mammogram and sure enough, it was no cyst but a 2.1 cm tumor. I knew I was in trouble when the technician sent in a breast cancer nurse instead of the radiologist. She took me to the radiology room and all of them sitting there averted their eyes from me as the one looking at mine pointed to it on the screen. It looked bad to me from the get-go, with little protrusions. My onc told me that being the aggressive HER2, it probably had only been there a couple of months. If I had gone to my mammogram nine months earlier, it wouldn't have been there and knowing me, I probably wouldn't have had another for over a year and it would have spread everywhere by then. So I like to say that my book Weird Michigan saved my life. - Skye

One thing I have come to believe is that we can all find reasons to be esp scared based on our pathology. For example, I am triple neg. My onc was surprised that I was upset by that. He says it is not "necessarily a bad thing". But if you read the threads on triple negs, it will scare you witless. Same with her+. Same with tamoxifen. We are all going to be ok. We can't live in fear. Its way tooo scary a world to do that.

Melia

I imagine that my posts are sounding down/negative and I apologize. I'm really not. In fact, I'm told all the time how wonderful my outlook is, etc. The truth, however, is that I do have my fears and this seems to be the only place you can discuss them. I will try to keep them at minimum.

Off to plant some stuff Jaclyn and I got at Lowes. Planting is such a chore for me, but I love the finished product.

tppj heck do not worry about being neg ... as all of us know its tough vent , cry , anything you want here .
Lynn : I got my package ... sweet its great you are a doll .
Jan , Caya , viddie andyone else in chemo or done right now feel better !
Mary : hang in hope your BIL is not in too much pain and all things work out the best way they can .
I did my rad planning today and got tatooed start rads My 25th . Starting to feel better .... am out tonight for dinner with some BC girls I have not met yet plan to have a good time .
This board is doin funny things again so i am going to get this post in before i loose it .....

Tina, if we all just came on board and said happy things, no matter what was going on, there would be no value to this board at all - remember that. We fortunately aren't all in the same place on the same day, but we all have our up days and our down days, and when we're down it helps to know that the others of us have been there too. So keep on saying whatever you feel - that's the whole point. I often don't get much support from my friends, because I don't let them know how it really is. They wouldn't get it anyway. Here, you know everybody gets it.

Lynn, I know you had mentioned this before, but it took until now for me to think enough to actually use Word to write my replies. Thanks for the tip. When I think of all the time I spent writing posts that totally disappeared, I want to slap myself.

Viddie, I'm anxiously awaiting a report from your visit to the PS today. It was today, wasn't it? My brain isn't working too well today. I've had too much time to think I guess. I'm wondering, right now, whether I should take radiation AND Arimidex or something, even though neither of them is indicated in my case. Oh well...I guess I'll settle down eventually.

I've been looking for a maid this week to come in and help with major cleaning. It seems that as time goes on, DH is actually doing less than he did before, although I am sure he doesn't think so. I am more tired, and it's an effort to even do as much as I do normally. I get annoyed with him, but also realize he's working hard all day, and coping with the stress of my illness as best he can, so whether or not it's financially acceptable to him, I'm going to just hire someone to take us both off the hook. I don't want to fight about something so trivial as housekeeping chores, but I also don't want to live in a dirty house.

Mary, I'm sorry about your BIL. Prayers going out for your family.

You know what I think about the Turtle Faces? I think for many people that "cancer" is still another word for *DYING". They see us in our scarves or bald heads, think *cancer," immediately switch over in their heads to "dying," and off they go into their turtle faces and pity looks and avoidance. They're just ignorant of the fact that cancer isn't necessarily a death sentence anymore.

Skye, I'm sending you a PM.

Hugs to everybody else.
Mel

Hello Gals,

I was just getting a quick feeling to where the mood was heading today and it seems that there is a lot of concern about recurrence, and worry that cancer can return. Did we do enough? Was the diagnosis appropriate? Was the treatment correct?

I think the best we can do in this department is stay informed--comparing notes and discussing things is one way we do this--we can be proactive and just hope for the best. But the fact is, no one and nothing can guarantee that cancer will not return. In fact, about the only guarantee we all have is that we will all die sooner or later; there is no avoiding that.

One thing I remember for watching the emergency room shows is that the trauma professionals tell us that most people who get to the emergency room don't expect to be there on the day they arrived, things happen suddenly and unexpectedly. So how to deal with all this uncertainty...??? No one knows exactly when or how they will die; no one knows exactly how the world will end. But we all know that death will come sooner or later. It is important to have your spiritual house in order, so when it comes, you're ready. Figure out what is important in life, what you want to do, what you can do, and what kind of statement you want your life to make. Death is something that can be faced with strength, dignity, and courage.

Hope I didn't sound morbid because I didn't mean to sound morbid; I think this can be a positive thing.

Mizsissy

I was shopping at Penneys tonight, looking for some camisoles/tank t-shirts to wear once the radiation gets going and my skin is irritated.

I passed a woman who could have been my cousin, passing her in the aisle. Same size, near the same age, wearing a scarf tied over her head. We both paused, looked at each other and smiled.

There are times when I have seen women who look at me in my scarf and there is an awareness, I imagine sometimes that I can see a very personal memory in their eyes. Those are the women who have a sweet smile to share.

I don't mind the turtle faces as I AM fully cognizant that eventually my outer appearance will return to normal.

The flip side of that is I'm not sure how long it will take for my inner self to achieve a semblance of balance.

Cindy

PS Penneys had Jockey all cotton tank t-shirts on sale for 25% off if anyone needs some for radiation.