Dis Breast Cancer Survivors - GAGWTA!

[snappy]

Glad you joined us, Pinnie. Lurk away, and post anytime, this is a great thread. I not only have learned alot here but also been touched to the point of tears many times. There are some amazing ladies (and Dan) who follow this thread.

MinnieM3, I am so sorry you are down. No wonder with the pain you are in.
You have been through a lot and are due a break. At least you got good news from your oncologist.

CheshireVal, thanks for the update on your mom. What a relief!! She must be in a daze after getting the good news if she was already planning her mastectomy. Hope your Aunt hangs in there.

Ann, you are definitely on the home stretch!!! Sorry to hear of the tiredness and redness but it sounds like you have it in stride. Hooray for you!!!

 

[disneylizzy]

Hi everyone - I wanted to share some good news -
They just had a report on NBC News that scientists are starting to understand how a gene is responsible for the spread of cancer (and breast cancer was the example they were using). One scientist said that they know a lot about how the tumors start, but these studies were very, very promising in showing how cancer spreads to other parts of the body. Well, the part that really made me sit up was that the research could lead to new medicine to stop metastasis and they weren't thinking in terms of years, but months. Let's hear it for the men and women in the white lab coats! :thewave:

Val: So glad to hear that your mom was okay - what a huge relief for her, especially with your aunt going thru such a tough time.

MinnieM3: Know what you mean about the depression thing. I just went off my Effexor after a year and a half and I can't seem to take the dog for a walk without crying. I think it is getting better, though, but I don't know how I would do if I was in pain all the time.

Pinnie: You know what I love to hear - that someone is a 10 or 15 year survivor and that they are doing fine. Way to go to your 85 year old mom!

I made our plane reservations today for our trip to see Mickey on August 29. Cross your fingers for us, we were at WL last year during Frances.

 

[Pea-n-Me]

Hi everyone - I wanted to share some good news -
They just had a report on NBC News that scientists are starting to understand how a gene is responsible for the spread of cancer (and breast cancer was the example they were using). One scientist said that they know a lot about how the tumors start, but these studies were very, very promising in showing how cancer spreads to other parts of the body. Well, the part that really made me sit up was that the research could lead to new medicine to stop metastasis and they weren't thinking in terms of years, but months. Let's hear it for the men and women in the white lab coats!

disneylizzy, thanks for that great report, it just made my day! I hope we'll be hearing more about this in the months to come.

Val, so happy for your mother's good news. Tell your aunt to hang in there. Taxol is a difficult drug but it's our friend in the fight against this disease. It won't be forever. What did you decide about your own mammogram?

Ann - what can I say but WTG!! Glad you'll be finishing up soon. I know it's nuts but do you feel like it's going to be emotional for you when you leave there? I found it to be. I'm glad your skin's holding out. I wound up with some pretty bad burns and infections toward the end, not nice at all. I also had edema for months afterward but thankfully that's gone now. I have noticed a change in my skin in the areas that were irradiated - pretty subtle but a little strange. Anyone else have that sensation?

snappy, you forgot Pop Daddy! Hey...

Minnie, so sorry this is still going on for you. It's no wonder you're down, chronic pain affects your life in a huge way. They should give you something for pain, there are lots of options out there. Does the hospital you go to have a Pain Service (usually anasthesiologists)? If so you could ask to have a Pain Service Consult and they could help you find something to make you more comfortable. Pain is not my specialty but if I can help you in any way find something that may work for you I'd be glad to. BTW, are you a teacher?

pinnie, welcome. Your mom sounds like my type of gal!

Laura, welcome back!! Glad you had a great trip, would love to hear about it!

MMM, ditto for you. Glad your mom's doing well.

Elenita, you sound in good spirits.

Laurajean, how are you doing? I've been thinking about you and hoping things are going better for you.

Everyone else

 

[laurabelle]

disneylizzy- Yes, a friend sent me this article yesterday...

WEDNESDAY, July 27 (HealthDay News) -- Researchers have identified a
set of genes that seems to predict if breast cancer will spread to
the lungs and how serious the disease will be.

The finding could eventually help doctors to predict whose disease
will become aggressive and spread, and potentially help them to
better target treatments. The lungs and the bones are frequent sites
for cancer that spreads from the breast. And cancer that spreads
from the breast to organs such as the lungs accounts for the
majority of breast cancer-related deaths, research has shown.

"We are the first to identify a clinically relevant set of genes
that can predict metastases [spread] of breast cancer to the lungs,"
said study co-author Gaorav Gupta, a graduate student and researcher
at Memorial Sloan-Kettering Cancer Center in New York City.

A report on the finding appears in the July 28 issue of Nature.

The researchers began with a set of cancer cell lines from 82 human
breast cancer tumors. "We used a mouse model to mimic metastases,"
Gupta said. "We take these cells and inject them into a special type
of mouse that allows you to inject human cells into them. We allowed
lung metastases to form. We took out the lung metastases and took
the cells and asked, 'What is special about these cells that will
allow them to create the metastases?' "

To answer the question, the researchers used a "microarray"
technique that allowed them to look at 22,000 genes all at once.
Then they identified the genes that created the cancer spread to the
lungs, and then put the genes back into the original cells to verify
they were responsible.

Then they took another look at the human tumors. "We asked, of these
82 tumors, which ones expressed our genes [identified as those
responsible for the spread]. We found a subgroup that expressed the
genes and these patients were much more likely to develop lung
metastasis."

Next, said Gupta, the research team hopes to repeat the findings in
a larger group of patients, "to be certain this isn't just something
unique about the cohort we selected."

If patients with these genes can be identified, the next avenue of
research would be to figure out if there are specific drugs that
could prevent the lung tumors from forming. Certain "inhibitor"
drugs have already been shown to suppress the genes identified in
the new study, Gupta said.

William C. Phelps, scientific program director of the research
department for the American Cancer Society, praised the new study,
saying, "Being able to identify a patient with a higher probability
of developing metastasis would be of tremendous importance in terms
of managing these patients."

The severity and course of cancer, even the same type, can be very
different from patient to patient, Phelps said. "One of the
decisions to struggle with is what [treatment] to give to which
patients," he said. "Obviously, if you know cells in a particular
tumor will be more likely to spread to the lung or bone, you would
treat these patients more aggressively."

The identification of the gene pattern is a first step, he said. "If
we can identify those genes, the next step may be to target the
genes for therapy to prevent the spread of the tumors."

 

[laurabelle]

I thought I'd pass this along too from a friend at Y-Me. Lillie is a wonderful speaker. She's not only an onc nurse at Johns Hopkins, but a breast cancer survivor too, not to mention an awesome, funny lady!

Once registered, just call the 800 number on the day of the
tele-conference.

ShareRing Network:
Wednesday, August 17, 2005, 7:00 pm CDT
Register in advance at www.y-me.org
Lillie Shockney, RN, Johns Hopkins Breast Center
"Sexuality and Intimacy"

 

[laurabelle]

Pinnie- I'm glad you're here and congrats to your mom!!! I'm really sorry for your friends news...you sound like you'll be there supporting her, you have no idea how much that means to us survivors! I hope you get good news on your mamm report.

Louise-I did Taxol too. It's probably the steriods that your aunt is taking that are making her depressed and angry. I hated being on them and talked to my onc about it. She said it's supposed to help, in alot of different ways, but for me personally, it wasn't absolutely necessary that I take the steriods with the Taxol, and since it wasn't helping, she took me off it. It made things much more tolerable! Taxol can have some painful side effects, bone pain, aches like the flu, and neuropathy- numbness and tingly in hands, fingers, feet and toes- to name a few. Maybe if she talks to her onc about it, s/he can help.

Ann- I'm so excited for you! Hopefully you'll find a little energy to celebrate next week! Seriously though, your body does ALOT of healing when it rests. One of my nurses told me before I started treatment, to listen to my body. It was one of the hardest things to do in a world that is constantly moving, to step off for a while and rest, but your body needs it.

Linda- I wrote a mini-trip report. I have a busy week ahead...my youngest dd's 9th birthday is Sunday, so a kid pool party Sat. and family party Sunday for that. My neighbor is having an annual party Friday night too. Those are all the good, busy things! I'm having another flex-sig scope Monday morning. I have Ulcerative Colitis that is acting up.

Sending prayers and pixie dust to all!

 

[NHAnn]

Ann- I'm so excited for you! Hopefully you'll find a little energy to celebrate next week! Seriously though, your body does ALOT of healing when it rests. One of my nurses told me before I started treatment, to listen to my body. It was one of the hardest things to do in a world that is constantly moving, to step off for a while and rest, but your body needs it.

And on that note, I believe I will tell them at work today that I am not coming in tomorrow, and have myself a "down" day of rest

Linda...I'm mostly just red...I've got a few spots , a few small raised bumps that are darker and kind of pimply looking, but so far they are on the edge of the upper inner part, near the "cleavage" part I guess you would say (How's that for technical terminology? ) So, they don't seem to get raw or anything, and they aren't painful, just a tad itchy. I have to confess that I have been dabbing some neosporin on just those dots the last few days and it seems to be helping. The dots shrink, and as I said don't seem to get blistered or infected. Have not told the nurse because they said don't put anything on but what they give me. The neosporin is worn off long before my daily treatment anyway ..on the rest (the majority of the radiated area) I just use the aquaphor ointment they gave me.


dizzylizzy and laurabelle, thanks for the info!


have a good day everyone!

 

[laurabelle]

And on that note, I believe I will tell them at work today that I am not coming in tomorrow, and have myself a "down" day of rest

You go gurl!

 

[snappy]

Good decision, Ann, to take a day for yourself. You deserve it!!!!!!!!!!!!!!!!!

DizzieLizzie and Laurabelle, thanks for posting those news reports about the gene study for lung mets. This sounds huge, in terms of both identifying patients likely to have mets and developing meds to target BC. This news makes me feel "up" for some reason.

I also had a great day with DD9 with our Cancer Services group at a really nice new lazer tag place and the bowling alley. Even met a new BC friend who is expecting her second child in September. Very inspiring story, she even had non-Hodgkins lymphoma at 16, treated at St Jude, and her dear mother died 3 years ago with cancer. She is a very beautiful African American woman. I had a feeling I would like her the way she smiled at me when we walked in to the bowling alley, but the CS director later introduced us. Anyway, DD9 had a wonderful time with the young volunteers that work at these monthly events and I had a great adult conversation, some but by no means all of which was about cancer. I refuse to let cancer rule me.

 

[Laurajean1014]

Hello everyone!

I just got caught up on all the posts I've missed these passed few days.

I go for my surgery this morning and cleaned up a lot of stuff so I can be relaxed during and after.

I cleaned the house, thoroughly, changed the sheets, comforters, shams. Folded enough clothes that could make Macy's look anemic and paid my bills out til the 10th of August.

I'm waiting for my sister to take me to the hospital.

I've decided not to tell Greg (DS9). He's sleeping over a friends house, and will not be back til Friday night. That gives me time to get out of the groggy stage. When he is older, I'll let him know.

I got my period the other day.....just what I wanted for the surgery! As if I didn't get enough indication that I was a female these past few weeks.

Well, take care - I'll be back soon.

 

[snappy]

Good luck, Laurajean. You and your surgeon are in my prayers.

 

[disneylizzy]

Laurajean, wishing you a quick recovery. Thinking about you.

Ann, enjoy the day. The heat wave just broke in Boston, so here's to cooler weather for you.

 

[Pinnie]

Thanks you, everyone for the warm welcome!!! I am truly inspired by you. I had to have total hysterectomy back in 1990 and I wish I had a support group like this back then. It was in the dark ages...before interent!

Laurajean, you will be in my thougths and prayers today!!!

My mom battled her cancer with an amazing sense of humor. When asked if she wanted a lumpectomy or masectomy, she immediately said "Take it ALL off". The Dr tried to tell her to think it over for a few days, but she made up her mind and there was no changing it. He then asked her if she wanted reconstructive surgery. She looked at him and said, "When I go up to heaven and my husband meets me at the gate (Dad had died a few years earlier) I don't want him to say to me, 'Where were THOSE when I was alive?'" Needless to say the surgeon cracked up and she didn't have reconstuctive surgery!

I religiously go for my mammogram yearly and had a biopsy done even though the surgeon was pretty sure it was just calcifications due to fibrocystic changes. I insisted and was relieved when he was right. But you just never know.

I am going to be there for my girlfriend as best as I can. She lives in Florida and I live in Michigan, so thankfully we have daily E-mails and IM sessions and free long distant cell phones! She sees the surgeon today for her surgery options. We were due to travel to the Boston area in early August and she really WANTS to go. She says she needs a place to just "fall apart" because she can't do it at home around her DH, who isn't taking the news all that well. Any suggestions?

Thanks again to all of you for your welcome. God Bless you all!

pinnie

 

[Pea-n-Me]

pinnie, do you want to go somewhere near the beach, perhaps, so she can relax a bit? Maybe Cape Cod, a little cottage somewhere on the lower Cape? I can't imagine she'd be up to running around Boston but if you do a search on Dan Murpy's threads he recently visited Boston and hit a lot of the hotspots. He'll probably be by to comment later since he follows this thread. If you have an area narrowed down maybe I can give you some more ideas.

 

[Pinnie]

pinnie, do you want to go somewhere near the beach, perhaps, so she can relax a bit? Maybe Cape Cod, a little cottage somewhere on the lower Cape? I can't imagine she'd be up to running around Boston but if you do a search on Dan Murpy's threads he recently visited Boston and hit a lot of the hotspots. He'll probably be by to comment later since he follows this thread. If you have an area narrowed down maybe I can give you some more ideas.

Thanks for the suggestions! We are actually going to be in the Foxboro area for the Drum Corp finals at Gillette stadium. We thought we'd hang around the hotel during the day, grabbing nice lunches/dinners. We planned something low-keyed because we just got back from a week in Vegas and SoCal (Disneyland) before she went in for the biopsy.

pinnie

 

[Disney Debbie]

Hi All. Had my port put back in Tuesday. When I had it before - which was almost exactly a year ago (they took that one out when I had my mastectomies) I didn't remember my collar bone and my shoulder aching so badly! But I also had my first chemo the day I got the port and they pumped me up with steriods! So who would have thought it was BETTER to get chemo along with your outpatient surgery??? Yesterday I was feeling pretty bad by the afternoon - but I'm feeling pretty normal today.

My DD has postponed coming back by one day I can't blame her - the flight was overbooked and so she's getting a free ticket up to $600 and hotel and food vouchers for today. So she's coming back tomorrow night - I was SOOO disappointed - but at least this way I don't have to take a vacation day tomorrow like I'd planned. (the airport is 2 hours away and her flight isn't supposed to get in until 9:00 p.m.)

Laurajean - you know what's best for your family - but if you end up having to have any sort of treatments - you really need to tell your DS. They pick up so much more then we realize - and they come up with their own explanations - lots of times that are worse then the truth or where they blame themselves for doing something wrong! You don't want your son to feel that way.

 

[MinnieM3]

Laurajean....good luck. I'll be praying for your quick recovery!

I forgot who's aunt was on Taxol....but this was a very hard drug for me, too. Bless her heart. It's just a one day at a time kinda thing. Sorry she's going through this.

Pinnie....welcome! this is one great place!

I also forgot who asked if I am a teacher.... YES!! My beloved 3rd grade.... going into my 16th year. Got my class list yesterday and got so excited!! I have 14 girls and 10 boys. And some double names.....I do hate that.... like 2 Marys or 2 Joes, etc. Oh well. One week from tomorrow and I'm back.

My pain is getting better! Sleep is gettting better! Depression still kinda so-so. I need a break from my DS6 so bad and I feel SOOOO guilty about that. He's not really at the point where he's made friends on his own and I've been out of the "mommies" loop at school for almost 2 years now, so it's hard for him. He's not a problem or bad or anything like that. I just want like 8 hours of peace and quiet when I'm awake.

DH has been having chest pains since yesterday (he's got a stent nad has had problems in the past) and is at the ER now with DS16. He works at the hospital where he is at, so I'm here with DS6 waiting for news. I"m sure he'll be OK. Hate that waiting.

Need to go do some school prep stuff.....just unmotivated right now.

Don't know what I'd do without ya'll!

 

[snappy]

MinnieM3, I just read your post. I hope you DH is ok and home by now.
Why does life have to through us so many curves?

 

[NHAnn]

Oh Minnie...hope your DH is OK!!

Laurajean, I didn't realize your surgery was today! I'm sending you healing/speedy recovery thoughts...and wishing you clean margins

Debbie-wishing you a happy reunion tomorrow with DD

Oh and Pinnie, Linda, disneylizzy...your posts make me think "hhhhmmm...Boston DIS/BCS meet in August???"

I'll be home tomorrow....resting...and catching up on a bunch of "stuff" on the home front.

 

[laurabelle]

Laurajean- I hope everything went well today...praying it did and for a quick recovery.

Debbie- Those ports can hurt! Still better than the alternative (like you have one!). I know you'll enjoy that reunion with you dd tomorrow!!!

MinnieM3- Again, I'm praying for your hubby, and you too...You have alot on your plate. Is there anyone around who can help out, especially now? Try not to feel guilty about needing a break. What you're going through is tough, and when you're trying to take care of others, well, you really DO need a break!