All about Xeloda
Comments
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Hi Divas - am behind on the thread (out of town for several days) but saw that the co-pay issue was a big one. Although that topic is past, I think it's worth repeating for those that haven't seen it - Genetech will very likely give a BioOncology Co-Pay Card which helps so very much with the co-pays for xeloda. Exceptions might be if one is on Medicare or Medicaid or lives in Massachusetts or Vermont (?). The phone nhumber is 855-692-6729, and the website is www.CopayAssistanceNow.com.
So much news from so many of you! Best of luck and good wishes to each and everyone. Sue
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I will talk to him when I get there and will read the report again to make sure I know what I am talking about.
It was 14/7 4,000......now 7/7 4,000 and I asked him if he minded that I called him cause I felt bad and he said absolutely call him and tell him how the SE's are, don't go back to him for 5 weeks cause he will be out of time......
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I guess I was wondering if xeloda would work with an AI. This would have two differenct forms of attack on the cancer. The xeloda to stop it from reproducing cells quickly and the AI to stop the estrogen. That way the cancer would be attacked in 2 areas. Is anyone doing this?
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Dear Frapp. i take Keppra - an anti seizure drug.. the two of them did a number on me for a while, and sometimes i am overly fatigued.. but all in all.. it's manageable. I am however, going to quit my Sunday accompanist job. My director is driving me bats.. always asking about my hands and health.. i can get a raise if i go elsewhere which is my intention. i think there are guidelines about sharing medical information.
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Blondie: Absolutely!! You definitely call him the minute any se's start again! I have to admit I am very curious how this new plan will work for you since you are on the same dose...just changing from the 14/7 to 7/7. Please keep us posted!!
Frapp: It makes sense to me, but I've never heard of someone being on both a chemo AND an AI. Is that what you might be doing?
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Aha, apple, you have been feeling harassed?
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Apple: yes there are laws against sharing medical information, they are called HIPPA laws. You can sue an employer for passing any of your personal medical information to anyone.
Lynn1: My brother is a pathologist (animal) and was asking if the oncs attack the cancer on different levels or only one level at a time. I was just wondering if anyone was doing this as it made some sense. Only key is, how do the drugs interact and how would the se's be? It was just something I thought I would throw out there to see if anyone else is doing it.
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Any sister willing to go into central address book thread and bump it so I don't have to see my name there for eternity?
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Mine (onco) said they do it by body weight also, but have read in here about 14/7 and 7/7 same results, told him and he agreed, we will see, starting tomorrow cause go zometa today!!
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Frapp: Very interesting. Let us know what you find out!
Blondie: Good luck today as you start your new cycle! Hope it goes so much better for you than in the past!
Well, last night I noticed that one of my feet is starting to peel again. *sigh* I'm not exactly sure what to do. I know that once before when it started like this it only got worse and worse and I ended up walking with gauze pads in my shoes. But, right now, it's not THAT bad. I went ahead and took my full dose this morning. I'm wondering if I should reduce the dose or not. What do you all think? Reduce now or wait and see another day or so??
I am totally amazed at how sensitive this drug is. I only went up by one 150mg pill twice a day. 300mg makes that much difference?! Wow!
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I am feeling for you, hon. Don't give up - just try to keep slapping those SE's back. Personal decision, but I am reluctant to change dosages without the blessing, or at least a conversation, with the doctor. Meanwhile about the feet - I switched from Cetaphil to Bag Balm and noticed a small improvement - stuff smells awful but looks powerful! Are you already using this? Sue
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Thanks, Sue! Yes, I'm using Bag Balm - stinky and sticky, but sure does work better than anything else I've tried!
I actually do have the blessing of my onc. When we talked about increasing the dose at my last visit, I asked what if it gets worse again, and he said to reduce it again. I like that he trusts me enough to make my own decisions about the dose. Obviously I would tell them what I've done so they know but he knows I might and is ok with that.
I'm just not sure if I should reduce it now (today) or give it a couple more days and see how much worse it gets. I'm afraid if I wait, it will be really bad again and then I have weeks of healing. But on the other hand, I really do want to get as much of the drug as I can. What to do, what to do....
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Hi All: Been off the boards for a bit trying to catch up on things before I go to NC for 11 days. Yea!
I got wonderful news on Tuesday. My CTC was 1, CA15.3 was 35 and my CEA was 4.1. Very excited about the CA15.3. I have one cycle left of Xeloda and Taxotere. I am very nervous about stopping chemo but my onc really wants me to take a break (I sure am glad I talked him into letting me do another 3 cycles). He will put me on an AI (already did Tamox and Faslodex which didn't work for long). He doesn't think it will do much but, he knows me and tells me that I will at least feel as if I am doing something. I am, of course, referirng to myself as the "chemo hog" because I just want to stay on it. It seems that most want off of it! This is my first go around with chemo for my Stage IV so, I guess it's normal to be nervous. Thanks for letting me share.
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K-Lo.. I have not been harassed... my director herself has had breast cancer and she is always worried that I'll fall over and die during a service.. she just wants to be prepared. If i quit my job, i'll look for another and want to remind them that hippa laws do exist. I'd be quitting because i am so emotionally attached to my group.. and do not want to train the kid who wants my job.
i took an extra week off the xeloda and felt great.. i did notice that one of my little nodes hardened and we don't want that. One thing I've done is make my week off a little longer than 7 days. 9 for instance.. those extra couple days really help and my onc. trusts me too.
about the peeling feet?.. once or twice a week i soak them in hot water and epsom salts (i don't know that you really need the salts).. the skin gets soft enough that if i rub the sides of my soles with a rough towel, a lot of that skin dissappears. I also saw a raspy thing at the store to sand your feet with and own a gentle debrader.. like a big nail file for the soles of your feet. It is definitely worth it to put work into this. I also cream them up every nite. sounds sexy.. no?
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Treso (aka: chemo hog - lol): I have no idea what some of those numbers are even about, but you sound happy so I asume they are good. LOL! I'm glad things are going well. I can only speak for me, but I would give anything to get off chemo and go back on AI's again! Hope you enjoy your trip to NC! What will you do/see there?
Apple: This is another of those areas where everyone is so different I guess. If I did that (soaked my feet and then scrubbed them like you describe), I bet I wouldn't be able to walk! Owie! Right after a shower is when mine seem the most "vunerable". But so glad it works for you!
So I have not decreased my dose yet. Today the peeling is not worse, but they are so tender. I feel like the "Princess and the Pea" -- I can feel every little thing I walk on! So I had to giggle thinking that I guess I really am a Divia - a Princess Diva! LOL! ;-)
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Hey yall.
I just wrote a nice reply to everyone and felt really up to date with how each of you is doing. Then my computer ate it. Now Im too tired to try to re create it.
Suffice it to say that I appreciate each one of you and am so glad to have this thread of fellow Divas.
My news: Onc moved my PET/CT from mid November to this Tuesday cause I told him I was having night sweats and liver pain. (which is true) however, I will admit that if I was terribly anxious about progression, I am not in any way above "exaggerating" symptoms in the hopes that my onc will order a scan post haste. In fact, 'a friend' of mine once did such a thing and was very reassured that the scans were good. She slept better. Interesting ethical notion, No?
In any event, I do have liver pain and some night sweats AND Im glad to be having a scan sooner rather than later to see whats what.
More detail when Im awaker.
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Livingit, What does liver pain feel like?....a dull throb or a sharp stab? A few weeks ago I woke up to some sharp pain in the region of my liver and it lasted for maybe 30 - 45 mins.....but then it went away and never happened again. My tumor is BIG, but since it has not interferred with liver function, I guess it is not in a really bad position....as if any position is a good one in your liver. Hope your scans turn out well and do not show any progression. Before I was diagnosed as Stage lV and had been complaining about pain in my sternum and my onco then was just pooh-pooing it all and saying I had most likely pulled a muscle, I checked night sweats, difficulty breathing and a bunch of stuff in those little boxes and finally got my bone scan....which as she put it, We will do a bone scan if that will make you happy......the results did NOT make me happy, but at least we found out what was going on and could deal with it.
Lynn.....Me too, I would love to be back on AIs. Now I am on nothing and will wait and see what the onco says next week since both CAT and bone scan showed progression. I went ahead and finished up the Xeloda since I had it.
Treso, Great news.
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Zoh, I can't like that you have liver pain. Nor Marybe's progression. Let's hope Xeloda is working hard. And I have to say that I'm over worrying about a few millimeters growth. Can hardly be sure that it's not angles and different readers.
Go, Treso. And way to be tough, Lynnie. Apple, what soft feet you must have!0 -
Marybe: I want them to find the right combo/chemo for you (understatement of the year, huh?). I want that for everyone! I was getting worried about you. Hadn't seen that you posted in a bit. Good to see you back.
Lynn1/Apple: I have given up on my feet and the peeling. I soak them every night (for hot flashes) and put cream on them. Nothing really seems to work very well.
LivingIt: Good luck on your scan on Tuesday. I will have my next one at the end of November. No matter what it shows, I will be taking a break from chemo.
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I took my last two Xeloda pills Friday night (although I guess I must have miscounted AGAIN as there is one lone pill left in the bottle) and am now going to wait and see what my onco has to say when I see him on Wed. Since both the CAT and bone scan showed progression, I am not expecting anything good and to tell the truth, I don't know what I want to do. I know it is very selfish of me and not realistic, but even though none of the treatments I have done have worked since I quit the bad one (abraxane/avastin) in July 09', I have been feeling good. Sure I have had a few little SEs like hair loss and constipation and some neuropathy (which thank God seems to come and go with me when I end the treatment causing it), and muscle cramps, but I have not really felt bad or ever been unable to carry on with life as I have always known it ( of course some things I cannot do since I am aging). So the big question is What now? Do we bring on the big guns with the big SEs?....I don't know if I am willing to do that. I would be perfectly happy to do some sort of treatment that would just keep me right where I am now....with a big fat tumor in my liver that isn't causing me pain or problems with liver function and mets all over in my bones, but they aren't really bothering me. I just don't want things to progress to the point where I am having pain and am unable to do things. I know this is not being realistic, but if they could come up with a treatment that would do that for me, I would be content. I am never going to be NED, but being stable would thrill me to death. ( bad choice of word I guess since I am not really ready for that, but you know what I mean)
I have not gotten any new suggestions from the onco at MDA and may have insulted him when he was talking about the male hormone and told him I don't want to look like Chas Bono.....now I mean how petty is that on my part, worrying about growing a beard and getting deep voice and gaining weight......but that's the way I am.....I want to look "normal" and it isn't just a vanity thing and I think you all know that. We had talked about this, how we don't want people to look at us and think Oh, that poor soul, She's got cancer. So I don't know what is next and in truth don't even want to have to think about it.
I am at my father's....saw the new car (which I am happy to say, I found out was not new, but a 2010, however it cost as much as a new one) and he was showing me his finances and talking to me about things. He had no business buying a car and he knows it, but I have restrained myself and not yelled at him. He didn't know how much interest he was paying, or even how much his payment was going to be and told me he just did what he thought was the thing to do,but now is starting to think he needs someone here to help him. Someone....that would be me. And I just don't want to have to deal with him, cancer or any of it.
Sorry, I am not talking like an inspiration today and feel bad if I have let you all down, but I am just tired and would like to go on a nice vacation and not have to come back.
Oh, I have not used the bag balm for awhile since really I did not ever get that HFS, but decided to the other night and my little toenail came off....What's with that!?!?
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not very inspirational my ass. Your posts are always awesome Marybe.. Sorry about your father and the decisions you face. maybe you can take that car back, give the dealership trouble for selling him one and perhaps get a rental.
Wishing i could send you to Hawaii for a couple years... or New Zealand.. you choose.
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Much love to you, Marybe. Your choice of vacation spots.
All is well, my body hardly knows it's taking X now that we have the nausea under control (zofran every 8 hrs NO MATTER WHAT, Lorazepam and Phenergan if it breaks through) Hands and feet are fine, but VERY soft. Of course, I am only starting my second week.... BUT my scans came back with no additional cancer, all that's left is microscopic from the tumor margins. RELIEF!
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well.. 2 days ago I walked 5 miles with the girl child to go shopping for her (a bra and a pair of jeans.... what more do you need?) and lunch. We walked thru a plague of grasshoppers and i was exhausted afterwards.. napping till dinnertime and my kids are asking.. 'aren't we going to eat?" But, yesterday and today i felt pretty awesome. Most of my exercise comes from fairly vigorous housework.. laundry, cleaning, mopping etc. and then of course a delicious nap with the tv on or a book in my lap.
hugs and prayers to all of you. I can tell this Xeloda cycle (after 2 weeks off) is a bit of a doozy.
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Marybe,
I too failed in X. I am going on a trial at MDA Nov 8. It combines arimedix (anastrozle) + everolimus (afinitor). It sounds really hopeful.
Musa Mayer writes:
We learned a couple of weeks ago about the BOLERO-2 trial results, but
because I'm hopeful the development of this drug and related compounds
that inhibitor mTOR is going to make a real difference for ER+
metastatic breast cancer patients, and perhaps for others as well, I'm
copying the long article below analyzing the trial results in the
context of endocrine resistance (failure of ER+ cancers to respond to
anti-estrogen therapy after a couple of lines of treatment, or at all)
and possibly drug resistance for chemo and HER2+ directed treatment as
well, as described in a recent abstract:
"The mTOR pathway is pivotal not only in tumorigenesis but also in
chemotherapy and hormonal drug sensitivity. It is clear that
improvements in using new targeted therapies are required to improve
breast cancer (BC) outcome. Nevertheless, to achieve this, new molecular
biomarkers are required to define the potential sensitivity or
resistance of cancer cells. By targeting the mTOR pathway, several
critical central transduction pathways that sustain BC are abrogated
(HER-2/Neu and the estrogen receptor pathway). Thus, the compounds that
inhibit mTOR have a double mechanism of toxicity on BC cells when used
in combination with a currently used drug: (1) overcoming primary drug
resistance and (2) restoring sensitivity when resistance arises after
long-term exposure. This review covers the utility of inhibitors of the
mTOR pathway in BC and emphasizes the new paradigm of close symbiosis
between oncology and molecular biology to better profiling and treating
BC with a targeted approach. In particular, we focused on the new drug
RAD001 (Everolimus) due to the great results from preclinical and
clinical trials make it the most hopeful compound among mTOR inhibitors
for the treatment of BC. " (Margariti et al, Breast Cancer Res Treat.
2011 Aug;128(3):599-606.)
Bear in mind that this drug is available NOW on the market, indicated as
a treatment for other cancers. But it's only the first in a class of
related compounds undergoing development.
As you read the article below, bear in mind that an increase in
"progression-free survival," or PFS, refers to an increase in the time
before the cancer progresses, not to an increase in how long patients
lived.
Musa
"Everolimus Posts Big Win in ER-Positive Breast Cancer"
Elsevier Global Medical News.
EXPERT COMMENTARY
Lee Schwartzberg, MD, Editor-in-Chief
Endocrine resistance eventually occurs in all patients with
hormone–receptor positive metastatic breast cancer (MBC). Current
approaches, which include switching to a different class of endocrine
agent or to an alternative aromatase inhibitor, show only modest
results. Until now, attempts to modify endocrine resistance through
interruption of alternative signaling pathways have met with limited
success. The second interim analysis of the BOLERO-2 trial, presented at
ECCO last week, demonstrated a marked improvement in progression-free
survival when the oral mTOR inhibitor everolimus was added to letrozole
compared to letrozole alone in treatment of women with
endocrine-resistant MBC. This huge clinical benefit represents a
clear-cut advance in the treatment of the majority of women with MBC who
have hormone–receptor positive disease, and will likely be quickly
adopted by oncologists. Future trials will establish the benefit of
blocking the mTOR pathways in other breast cancer subsets.
News Article
STOCKHOLM (EGMN) - Coupling everolimus with exemestane has produced such
dramatic disease control in women with advanced hormone resistant,
estrogen receptor-positive breast cancer that it is expected to
transform the management of these patients.
A preplanned interim analysis of the phase III BOLERO-2 trial found that
everolimus (Afinitor) increased the primary end point of
progression-free survival, by local assessment, from a median of 2.8
months with exemestane (Aromasin) alone to 6.9 months. This corresponds
to a 57% risk reduction (P = 1.4 x 10-15; hazard ratio 0.43).
Based on central assessment, everolimus produced a 64% reduction in the
risk of progression or death (10.6 months vs. 4.1 months, P = 3.3 x
10-15, HR = 0.36).
"Everolimus is the first agent to enhance the clinical benefit of
hormonal therapy in refractory estrogen receptor (ER)-positive
patients," lead author Dr. José Baselga said at the European
Multidisciplinary Cancer Congress.
"Our results could represent a paradigm shift in the management of
patients with hormone receptor-positive breast cancer," he added
Invited discussant Dr. Fabrice André, from the Institut Gustave Roussy
in Villejuif, France, called everolimus the most important advance in
breast cancer since trastuzumab (Herceptin).
"The efficacy of everolimus in the BOLERO-2 trial is in the range of the
most important advances in medical oncology," he said.
Novartis plans to submit the data for worldwide regulatory approval of
everolimus as a treatment for ER-positive advanced breast cancer by
year's end, although the medical oncology community is likely to embrace
off-label use in this indication since both drugs are already available.
Everolimus is approved in the United States for progressive
neuroendocrine tumors of pancreatic origin, subependymal giant cell
astrocytoma associated with inoperable tuberous sclerosis and advanced
renal cell carcinoma after sunitinib (Sutent) or sorafenib (Nexavar)
treatment failure. Exemestane, an aromatase inhibitor, is approved as
neoadjuvant therapy for hormone receptor-positive disease in
postmenopausal women.
Everolimus was evaluated because the mammalian target of rapamycin
(mTOR) pathway is activated in hormone therapy-resistant advanced breast
cancer. Phase II everolimus trials suggested that the mTORC1 inhibitor
could reverse resistance to endocrine therapy, said Dr. Baselga, chief
of hematology/oncology and associate director of the Massachusetts
General Hospital Cancer Center, Boston.
BOLERO-2 enrolled 724 women postmenopausal women with advanced
ER-positive, HER2-negative breast cancer who were refractory to
letrozole or anastrozole. Prior treatment also included chemotherapy for
metastatic disease in roughly 25%, tamoxifen in 48% and fulvestrant in
about 16%. Patients were randomized to everolimus 10 mg daily or
placebo, with both arms receiving exemestane 25 mg daily.
The overall response rate was 9.5% for the everolimus arm and 0.4% for
the placebo arm (P less than .0001).
The clinical benefit rate was 33.4% and 18%, respectively (P less than
.0001), Dr. Baselga said at the joint congress of the European Cancer
Organization, the European Society for Medical Oncology and the European
Society of Radiotherapy and Oncology.
A progression-free survival subgroup analysis showed consistent results
across all subgroups.
At the time of the interim analysis, 83 deaths had occurred (10.6% in
the everolimus arm and 13% in the placebo arm), but the data are
immature, he said.
Adverse events were consistent with previous everolimus experience
including stomatitis, fatigue, noninfectious pneumonitis, and
hyperglycemia, Dr. Baselga said.
Dr. André said BOLERO-2 provides robust and clinically relevant data,
but added that "preclinical data suggest we can do even better." He
pointed out that inhibiting mTORC1 alone is not optimal because of the
activation of alternative compensatory or parallel pathways, and he
suggested moving to combination trials to inhibit alternative pathways
and reverse resistance.
"BOLERO-2 is just part of the iceberg coming," Prof. Jean-Charles Soria,
cochair of the Congress scientific program and cancer specialist at
Institut Gustave Roussy in Villejuif, France, said in an interview. "The
whole question now is about building a triplet combination that is not
too toxic and that is feasible."
He referenced the ongoing phase III BOLERO-1 and BOLERO-3 trials
assessing everolimus in combination with paclitaxel and trastuzumab in
HER2-positive metastatic breast cancer and the triple combination of
everolimus, vinorelbine, and trastuzumab in HER2-positive, locally
advanced, taxane-pretreated disease resistant to trastuzumab
(Herceptin).
"I'm pretty convinced from what I've seen in phase I and II, that the
phase IIIs in combination with Herceptin might also come out as
positive," he said. "So, the way we think about breast cancer is
probably going to change with mTOR inhibitors."
Dr. Baselga reports consulting for several pharmaceutical companies
including the study sponsor, Novartis. Dr. André has previously reported0 -
Marybe
I did not finish my post. This is from a lady already on the trial at MDA.
Who is your Dr. there?
Suzanne Hebert writes:
I am currently on a phase 1 trial at MDAnderson with everlimus and
arimidex. First scan after 3 months showed an overall decrease in liver
tumor load of 21%. I am thrilled after 2 years and 4 chemos which didn;t
do much for the liver tumors. The side effects are minimal.
I hope this gets approved for bc ASAP so it is available to others. It
has been very good to me so far!
Suzanne
Good luck and never give in and never give up!0 -
Super13: YIPEEE!! You are feeling good and scans are good. Thats what IM Talkin Bout!!! Congrats.
Marbey: You seem to forget,my friend, that this is the place where we don't have to take care of everyone, and be proper all the time. Let it hang out girl. Im sorry you are looking at nasty chemos. I always wonder if I've used up the tollerable ones and then it turns out that the one I was so afraid of is not so bad. I hope the same is true for you. Liver pain can feel like a fullness in under your right lower ribs, a shooting pain in that area, an ache in the area of the liver or in the back. It differs. I hope you dont have anymore twinges like the one you describe.
Apple:Those extra days in the off cycle would certainly make a difference to me. im day 1 of cycl3 and feeling beasly tired in the bed all day, falling asleep as i type.
Still having BIG sleepiness as SE number one. Not too bad as side effects go as they say.
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Marybe,
You express so well the not wanting of side effects that will affect your quality of living. I feel so much the same way you do. It is truly priceless to me to be able to look like anyone else and be treated like anyone else.
Please keep posting - as apple has already said - your posts are inspirational.
Rachael
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Marybe: At my September BC support group meeting in my town, there was a young woman who had just been diagnosed with Stage II BC (all I could think was, "lucky dog!"). There are two of us in the group that are IV. I was talking to my sister about it and was concerned that we may scare people, that, so early in their diagnoses, it may be frightening to see what may happen. My sister (wise woman that she is) reminded me that that support group was there for my support as well. As we are all here for you. You certainly are an inspiration but you're also human and have your bad days. Who doesn't? Personally, I'd choose Tahiti but, right now, I'm settling for NC. And now, I will take my tired, intestinally challenged, fingernailless (not quite but it sure feels like it) mouth sored body to bed. I feel pretty, oh so pretty....
Good luck on Wednesday.
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Marybe...
There isn't a soul here who you could possibly disappoint! I think you put far too much pressure on yourself and it's time for a little selfish Marybe time! If you can't take an actual vacation right now, maybe you can pamper yourself at home. I know it's easier said than done with our busy lives... and especially now with this cancer crap... but if not now then when?! You will always be an inspiration, you can't change that. But hey, inspirations get tired and cranky too!!!!
Spoil yourself, Marybe... you've earned it!
xoxo
Rose.
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Treso: "I feel pretty and witty and gay!" (in a happy way that is)
I think that should be out theme song.
Rose: Way to say it.
Marbey: I used to worry when I vented about my depression and anger early on, that the folks here would see me as an angry, sad, brokenhearted person. The truth was that I did feel that way sometimes and didn't want to let my family know how bad it got sometimes. But the women here understood, even more than I did, what I was going through. When I felt better and posted happpy thoughts they were accepted just as easily.
You are hereby entitled to no less that 10 very negative posts. I present this as a nice certificate for you If I knew how. Its the thought that counts.
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