Dis Breast Cancer Survivors - GAGWTA!
- Thread starter laurabelle
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NHAnn
Survivor
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phew....lots to read and respond to here...I know I will leave something out...
kelly-
good to see you...
Hollyann....sorry we have to welcome you....do keep us posted!!
Susan-still thinking of you...
PigletsPal...thanks for the info...
laurabelle.... hope you get to the bottom the abnormal pap ASAP!
Laurajean...I have been thinking and pondering since I read your initial post asking for thoughts....so here goes....read until you're bored with my babbling
You and I have the same diagnosis (DCIS) I do believe. On pages 4 through 20 or so on this thread, is my journey through biopsy, diagnosis and re-excision, then later through the radiation and hormonal therapy. And there is a lot of thought and advice from some of the other ladies here when I was thinking through the hormonal therapy decision as well.
Anyway, as far as radiation...I don't think I ever considered NOT doing it. Although I got good clear margins on the first re-excision, my area of DCIS was quite large...more than 4 cm. So even with the definitive clear margins all around, I had to think long and hard about mast vs. rad. I decided on the radiation. I figured it was less invasive ...and since the ultimate survival outcomes are very similar with mast vs lump w/rad, that would be my path at this point. (I was someone who always thought that I would say "take it off" in that situation, but when faced with it, I went the other way. I can say "take it off" if it recurs I suppose ) Anyway, as I said, in my situation I was considering NOT doing rads since my area of DCIS was relatively large. I wanted the "insurance policy" it offers. I had 5 weeks (25 treatments) and it was a lot "easier" than I thoguht it would be. Other than fatigue which set in arounf the 3rd week and is now improving about 6 weeks after finishing, and some relatively minor skin irritation for the final week and two weeks afterwards, I really don't think it was bad. I'm fortunate that my treatment center is about 15 minutes from home and work. My surgeon and I are both pleased with the cosmetic outcome. I still have a little color change in the skin which continues to fade. As far as texture/sensation, I honestly do not notice a difference. There is a size difference, but that is not noticeable when I am clothed.
As far as the hormonal therapy...I had a much more difficult personal decision process in that regard, and some of that is documented on th is thread too. I am just not one to want to "take drugs"...especially since after a total hysterectomy in 2001 at age 44, I went along with strong encouragement from my OB/GYN providers to take an estrogen replacement (1 mg estradiol/day) despite a maternal aunt and first cousin with BrCa history and personal history of fibrocystic condition. Then all of a sudden I haev an ER+ diagnosis and am off the estradiol cold turkey, and getting strong recommendations to take drugs to block or reduce the estradiol in my body. Very ironic!! I do not like drugs (I think I said that before ) and was/am VERY afraid of the potential side effects. Although I do not have a uterus, the blood clot risk increase on Tamoxifen scares me as there is a stronger history of heart disease, stroke and hypertension in my family than of BrCa. And I did NOT want to deal with weight gain, I'd already gained a bit entering my 40's and then on the estradiol I was retaining fluid. What I opted to do, after more long hard thought and consideration, was enter a clinical trial. I started my therapy about 5 weeks ago. I do not know if I am on Tamoxifen, or Arimidex. You have to be post-menopausal to take Arimidex. And, Arimidex is not yet FDA approved for DCIS cases except as part of the trial. Tamoxifen blocks the estrogen receptors in the breast cells. Arimidex prevents the adrenal glands from making any estrogen (if you are pre-menopausal your ovaries make estrogen, , the adrenals make some in post-menopausal women). Anyway....I decided that I would start the meds as part of the the trial, and I can stop anytime. I will not know which I am on until the trial is complete and results released (or if I suffer a life-hreatening medical issue I can be "unblinded") Even if I stop I will be "followed"/monitored by the onc's office continually. I just figured....if I don't know which I am on, I won't have any "predisposition" to common side effects ...and they both cut recurrence risk and new cancer development risk, so...I'll be a guinea pig if it works for me! I do worry about long-term side effects, of both drugs, but my convoluted reasoning is that if I can tolerate any short-term nuisance effects and self-assess over the next few years, take advatage of the monitoring under the trial, keeping an eye on the research that comes out continually...then the balance may be tipped toward the benefit outweighing the risk.
And as of week 5, I have not gained any weight...I had some nausea from about day 3 through day 7 of taking the pills, have occasional headaches helped with ibuprofen, some muscle and joint stiffness/soreness, and a little bit of , ahem, dryness/itchiness...but I really am not sure if any/all of this is the meds or other contributing factors (like getting old ) 
OK...so...probably way TMI for you LJ, and the others, but I thought I'd throw it all out there. I do remember beign VERY frustrated that the docs were not going to say: "THIS is what you should do" and anxious that I would make a "wrong" decision along the way. Someone here said to me at one point, something to the effect of "we just have to make the decisions, with the info we have, with our hearts and our heads, at any given time, and then act on it and move on". For me, it was...have the radiation, and then decide on the medication. Also I am being very conscious and proactive about regular exercise, healthy diet, and prayer/meditation/stress reduction.
I do wish you all the very best....trust in yourself! And feel free to PM if you want!!
kelly-
good to see you...Hollyann....sorry we have to welcome you....do keep us posted!!
Susan-still thinking of you...
PigletsPal...thanks for the info...
laurabelle....
hope you get to the bottom the abnormal pap ASAP!Laurajean...I have been thinking and pondering since I read your initial post asking for thoughts....so here goes....read until you're bored with my babbling
You and I have the same diagnosis (DCIS) I do believe. On pages 4 through 20 or so on this thread, is my journey through biopsy, diagnosis and re-excision, then later through the radiation and hormonal therapy. And there is a lot of thought and advice from some of the other ladies here when I was thinking through the hormonal therapy decision as well.Anyway, as far as radiation...I don't think I ever considered NOT doing it. Although I got good clear margins on the first re-excision, my area of DCIS was quite large...more than 4 cm. So even with the definitive clear margins all around, I had to think long and hard about mast vs. rad. I decided on the radiation. I figured it was less invasive ...and since the ultimate survival outcomes are very similar with mast vs lump w/rad, that would be my path at this point. (I was someone who always thought that I would say "take it off" in that situation, but when faced with it, I went the other way. I can say "take it off" if it recurs I suppose
) Anyway, as I said, in my situation I was considering NOT doing rads since my area of DCIS was relatively large. I wanted the "insurance policy" it offers. I had 5 weeks (25 treatments) and it was a lot "easier" than I thoguht it would be. Other than fatigue which set in arounf the 3rd week and is now improving about 6 weeks after finishing, and some relatively minor skin irritation for the final week and two weeks afterwards, I really don't think it was bad. I'm fortunate that my treatment center is about 15 minutes from home and work. My surgeon and I are both pleased with the cosmetic outcome. I still have a little color change in the skin which continues to fade. As far as texture/sensation, I honestly do not notice a difference. There is a size difference, but that is not noticeable when I am clothed.As far as the hormonal therapy...I had a much more difficult personal decision process in that regard, and some of that is documented on th is thread too. I am just not one to want to "take drugs"...especially since after a total hysterectomy in 2001 at age 44, I went along with strong encouragement from my OB/GYN providers to take an estrogen replacement (1 mg estradiol/day) despite a maternal aunt and first cousin with BrCa history and personal history of fibrocystic condition. Then all of a sudden I haev an ER+ diagnosis and am off the estradiol cold turkey, and getting strong recommendations to take drugs to block or reduce the estradiol in my body. Very ironic!! I do not like drugs (I think I said that before
) and was/am VERY afraid of the potential side effects. Although I do not have a uterus, the blood clot risk increase on Tamoxifen scares me as there is a stronger history of heart disease, stroke and hypertension in my family than of BrCa. And I did NOT want to deal with weight gain, I'd already gained a bit entering my 40's and then on the estradiol I was retaining fluid. What I opted to do, after more long hard thought and consideration, was enter a clinical trial. I started my therapy about 5 weeks ago. I do not know if I am on Tamoxifen, or Arimidex. You have to be post-menopausal to take Arimidex. And, Arimidex is not yet FDA approved for DCIS cases except as part of the trial. Tamoxifen blocks the estrogen receptors in the breast cells. Arimidex prevents the adrenal glands from making any estrogen (if you are pre-menopausal your ovaries make estrogen, , the adrenals make some in post-menopausal women). Anyway....I decided that I would start the meds as part of the the trial, and I can stop anytime. I will not know which I am on until the trial is complete and results released (or if I suffer a life-hreatening medical issue I can be "unblinded") Even if I stop I will be "followed"/monitored by the onc's office continually. I just figured....if I don't know which I am on, I won't have any "predisposition" to common side effects ...and they both cut recurrence risk and new cancer development risk, so...I'll be a guinea pig if it works for me! I do worry about long-term side effects, of both drugs, but my convoluted reasoning is that if I can tolerate any short-term nuisance effects and self-assess over the next few years, take advatage of the monitoring under the trial, keeping an eye on the research that comes out continually...then the balance may be tipped toward the benefit outweighing the risk.And as of week 5, I have not gained any weight...I had some nausea from about day 3 through day 7 of taking the pills, have occasional headaches helped with ibuprofen, some muscle and joint stiffness/soreness, and a little bit of , ahem, dryness/itchiness...but I really am not sure if any/all of this is the meds or other contributing factors (like getting old
) OK...so...probably way TMI for you LJ, and the others, but I thought I'd throw it all out there. I do remember beign VERY frustrated that the docs were not going to say: "THIS is what you should do" and anxious that I would make a "wrong" decision along the way. Someone here said to me at one point, something to the effect of "we just have to make the decisions, with the info we have, with our hearts and our heads, at any given time, and then act on it and move on". For me, it was...have the radiation, and then decide on the medication. Also I am being very conscious and proactive about regular exercise, healthy diet, and prayer/meditation/stress reduction.
I do wish you all the very best....trust in yourself! And feel free to PM if you want!!
laurabelle
DIS Veteran
- Joined
- Feb 1, 2003
- Messages
- 4,094
GAGWTA sistas! 
Ann-Thanks for taking the time to put it all down in such beautiful words that I think we all can relate to...
Unfortunately all cancer treatment comes with some pretty nasty risks. But there is ALOT of good coming out of treatment, I try to focus on that, to me that outweighs the risks. I fight my cancer and let the chips fall where they may. I have learned to trust that even if the worst happens, and I get a new cancer or some other bad disease, there's treatment out there for that too. It's a rotten position to be in, none of us chose it, but it's what we're stuck with. I really had to come to a point of just following my heart and the instincts God gave me. As a 6 1/2yr survivor, I have learned to place my focus on what positive things are going on with me, and not borrow trouble by worrying about things that could happen. BUT, we need to be much more aware of our bodies' little signals, and trust me, you will be! There is a fine line between awareness and fear & hypochondria...
LauraJean, I hope in some way it helps...you're not alone sista!
Now, having said all that... I am really freaking out! lol! May be TMI, so skip it if you like!
My gyn knows all about me, I have been seeing her for many years. Not only did she deliver both my children but she is the one who found my bc tumor in her office. I am upset that I did not get a phone call from her within a couple of weeks of my abnormal pap results. Obviously, when she got my phone call and pulled my chart, that's when she saw the results. I had an abnormal pap about 2 yrs ago, but I had nothing else going on, totally normal periods, felt fine. It could have been a lab error (been there done that before!) I just did repeat paps every 6 months and they were normal. But this time I am having symptoms. Like I said, I (and my G.I. doc and onc) assumed I was getting periods every 2 weeks recently because of the colitis flare, but as I look back on my calendar, it started in June, and now paired with the abnormal pap from May, it's freaking me out a bit. My gyn was just going to have me come back to repeat it at 6 month, which is Nov. but I said with getting all these periods, and they're heavy, should I get an ultrasound and she agreed. I can't call for it until Thur. because my gyn's office is closed today. So last night I was reading up on it, and I'm wondering if I should even bother with the pelvic u/s. I'm calling my onc this morning and seeing what she has to say. I may just go see the gyn/onc at the hospital and get a biopsy done.
My Disney trip is one month from today (my family, with my dear sister, 18yr old nephew
Food & Wine Fesitval 
MNNSHP
) and I told my hubby last night, I don't care if I'm sick 
the only thing that would keep me from going is if I'm dead...and that is not on my itinerary! 
laurabelle
DIS Veteran
- Joined
- Feb 1, 2003
- Messages
- 4,094
Target again is selling reasonably priced BC items with 100% of the profits going to the Breast Cancer Research Foundation. I know last year it was difficult to find alot of items in the store. I shopped online Sunday morning and bought the kids and I pink polos, got a pink leather watch, and pink cashmere flip flop slippers! 
Happy shopping!
www.target.com/breastcancer
PigletsPal- I wish I had an antenna!!!
Happy shopping!
www.target.com/breastcancer
PigletsPal- I wish I had an antenna!!!
Pea-n-Me
DIS Legend
- Joined
- Jul 18, 2004
- Messages
- 41,497
Laura, I can certainly understand your worry (I know you're thinking about the tamoxifin, right?). You also have the right to be upset the abnormal results weren't acted upon earlier. Nobody would blame you. 
If it helps at all - when I think of regularly irregular bleeding I think hormonal (have had a lot of those issues myself). When I think of irregularly irregular bleeding I'm more worried, KWIM? But because your case is complicated I'm sure they'll look at everything really carefully. Hopefully it's a "simple" hormonal imbalance, that's what I'll be praying for.
I am sending you a PM also.
You also have the right to be upset the abnormal results weren't acted upon earlier. Nobody would blame you. If it helps at all - when I think of regularly irregular bleeding I think hormonal (have had a lot of those issues myself). When I think of irregularly irregular bleeding I'm more worried, KWIM? But because your case is complicated I'm sure they'll look at everything really carefully. Hopefully it's a "simple" hormonal imbalance, that's what I'll be praying for.
I am sending you a PM also.
Laurajean1014
<font color=blue>WISH Biggest Loser/Blue Team<br><
- Joined
- Jun 28, 2001
- Messages
- 12,828
Susan - Glad to hear it went better than expected! Good luck to you and I hope you hear real soon about the results...... 
Thanks everyone for responding to my tamoxifin and radiation questions. My GP thinks I should have the radiation and that he suggested to the Oncologist that he call me today.
I am leaning towards doing the radiation! Still out there on the tamoxifin thing......
Thanks everyone for responding to my tamoxifin and radiation questions. My GP thinks I should have the radiation and that he suggested to the Oncologist that he call me today.
I am leaning towards doing the radiation! Still out there on the tamoxifin thing......
MerryPoppins
<font color=coral>I posted around Woo Hooty time<b
- Joined
- Sep 2, 2000
- Messages
- 16,323
Laurajean1014 said:Still out there on the tamoxifin thing......
LJ, I was open and honest with you about my experiences and I admitted that before I started Tamoxifen, if I'd known the side effects I WOULD experience I'd have had to think hard. The thing to remember is that not everyone experiences Tamoxifen the same way. No one can tell you how the drug will make you feel. Many people have few side effects if any and it's not bad enough that I'm stopping. That tells you something right there.
LB, I'd be freaking out, too. There is really no excuse for letting you slip through the cracks. But stay calm. It may be nothing to worry about.
laurabelle
DIS Veteran
- Joined
- Feb 1, 2003
- Messages
- 4,094
Quick update: I called my onc's office this morning and I have an appt with the gyn onc at the hospital next Wed. morning. 
MerryPoppins
<font color=coral>I posted around Woo Hooty time<b
- Joined
- Sep 2, 2000
- Messages
- 16,323
Glad you got that appointment. I think you made a wise decision.
Lessa of Pern
DIS Veteran
- Joined
- Jul 6, 2005
- Messages
- 603
going to the gyn is a good idea.
I had irregular bleeding, my gyn thought it was hormonal and did a D&C. and that's how my cancer was diagnosed.
I had irregular bleeding, my gyn thought it was hormonal and did a D&C. and that's how my cancer was diagnosed.
NHAnn
Survivor
- Joined
- Oct 15, 2000
- Messages
- 8,079
Laurajean...you can be "out there" on any of the decisions just as long as it takes you to make them....you'll know what's right for you.
laurabelle....glad you got an appt for next week....will pray for it to be nothing serious!
My two (of the 3) friends from my post-dx support group are finishing up their chemo in the next couple of weeks!
One has one left of 8 bi-weekly treatments, the other has one left of her six ,hers have been every third week. We will be having a celebration get together soon 
Tomorrow I have a checkup with the medical onc and his nurse who administers the clinical trials. I love the nurse...she spends a lot of time on personal issues, physical and emotional side-effect, quality of life "stuff". The doc is a cutie patootie....DH smirked when I announced with a smile that I had an appt tomorrow . Very different from my nervous anticipation of the check-up w/ the surgeon 2 weeks ago 
GAGWTA ladies!
laurabelle....glad you got an appt for next week....will pray for it to be nothing serious!
My two (of the 3) friends from my post-dx support group are finishing up their chemo in the next couple of weeks!
One has one left of 8 bi-weekly treatments, the other has one left of her six ,hers have been every third week. We will be having a celebration get together soon Tomorrow I have a checkup with the medical onc and his nurse who administers the clinical trials. I love the nurse...she spends a lot of time on personal issues, physical and emotional side-effect, quality of life "stuff". The doc is a cutie patootie....DH smirked when I announced with a smile that I had an appt tomorrow
. Very different from my nervous anticipation of the check-up w/ the surgeon 2 weeks ago GAGWTA ladies!
- Joined
- Jun 24, 2005
- Messages
- 5,573
Dan Murphy invited me here and for that I am grateful. My mom was diagnosed yesterday with breast cancer. We will know how extensive it is after next week. I have suspected it, but its still hard to take. Its funny, just when I think I have discovered DIS boards that mean something to me, I find another one. I look forward to getting to know my fellow breast cancer DISers. Thank you, Dan!
Hollyann
<font color=blue>ZJO for just today!<br><font colo
- Joined
- May 24, 2004
- Messages
- 3,744
Need A Disney Fix - Welcome! I'm a newbie, too! I know how hard it is to have family with this disease, my DMIL & DSIL battled, too! I'll be praying that things go well for your mother.
NHAnn - Always nice with the doc is a cutie.....makes the visits easier!
LauraBelle - I'll be praying that your appointment goes well.
Hope ya'll are having a good evening. I've gotta get some shut-eye. My work hours were recently changed and I start at 7am!
NHAnn - Always nice with the doc is a cutie.....makes the visits easier!
LauraBelle - I'll be praying that your appointment goes well.
Hope ya'll are having a good evening. I've gotta get some shut-eye. My work hours were recently changed and I start at 7am!
laurabelle
DIS Veteran
- Joined
- Feb 1, 2003
- Messages
- 4,094
~~~***GAGWTA sistas***~~~ Hey, I got 6hrs sleep last night and I'm happy banana dancin' this a.m...
As I was making and getting phone calls yesterday morning to set up this appt., I was in Bible study worship time. Afterward, some very dear friends prayed over me and I feel so much more at peace.
I still have a couple of details and phone calls to make, but I'm all set for next week's appt. and once all my ducks are in a row, I do not want to dwell on it. Of course I'm worried and it's in the front of my thoughts, but I have to take it one day at a time and once I'm done everything I can for the day, I have to set it aside. Disney is def. filling in the gaps! I went through Deb Will's site and printed out a bunch of F&W pages, and we're picking our our t-shirt designs for MNSSHP. We have decided to make "Nightmare Before Christmas" shirts. 29 days to go! need_a_Disney_fix - Laurie, a big GAGWTA welcome! Dan Murphy is such a thoughtful, generous man..we love him here!
I'm so sorry you had to come though. 
Feel free to ask anything here. I'm praying for your mom and your family as you all go through this. Hollyann- The early to bed part is hard too...though I'm sure after a few early wake ups, that part will get easier!
Ann- I love cancer graduation celebrations!
You sound good sista... looking forward to a great report!
MerryPoppins
<font color=coral>I posted around Woo Hooty time<b
- Joined
- Sep 2, 2000
- Messages
- 16,323
Hi Laurie! Glad you joined us, but sorry you had reason to. Keep us informed on how your mom is doing. We'll be there for you.
LB, glad that you are feeling peaceful. Positive thinking is never a bad thing and Disney is a wonderful distraction!
Ann, my OBGYN is a cutie. He's older than I am, but I've always found him attractive and easy to talk to. Funny how visits with him are less stressful than other visits. Visiting my surgeon is fun too because I love her nurse. Doctors and nurses who are down-to-earth and genuinely friendly are so much better to have appointments with than stuffy ones. My DS wants to be a doctor, and I so hope I can get that message through to him. Shouldn't be hard. He asked me the other day if it's okay for a doctor to wear Hawaiian shirts with slacks because he'd like to look casual and less stuffy.
LB, glad that you are feeling peaceful. Positive thinking is never a bad thing and Disney is a wonderful distraction!
Ann, my OBGYN is a cutie. He's older than I am, but I've always found him attractive and easy to talk to. Funny how visits with him are less stressful than other visits. Visiting my surgeon is fun too because I love her nurse. Doctors and nurses who are down-to-earth and genuinely friendly are so much better to have appointments with than stuffy ones. My DS wants to be a doctor, and I so hope I can get that message through to him. Shouldn't be hard. He asked me the other day if it's okay for a doctor to wear Hawaiian shirts with slacks because he'd like to look casual and less stuffy.
NHAnn
Survivor
- Joined
- Oct 15, 2000
- Messages
- 8,079
MerryPoppins said:..... Shouldn't be hard. He asked me the other day if it's okay for a doctor to wear Hawaiian shirts with slacks because he'd like to look casual and less stuffy.
Hollyann....will be thinking of you tomorrow, what time is your procedure?
Need a Dis fix - (wow, another Laurie/laura namehere!)...the waiting for results is so hard. As others have said, we're here for you and your mom.
Laurabelle...hooray for the 6 hour stretch, I know how good that feels!
My appt went well with the cute onc ...I did not see the nurse just him
Only glitch was I mentioned an odd (not painful) pinchy sort of sensation in the back of one of my legs the last week or so, midway between knee and butt...comes and goes, sort of weird, feels like someone is gently pinching or poking, or sometimes if I'm sitting like there's something hard on the chair. I guess it's good he asked such thorough and probing questions about everything, I may not have mentioned it otherwise. No redness, no swelling, and as I said, not really painful just ...odd. Well since we don't know if I'm on Tamoxifen or Arimidex he sent me for an ultrsound of the leg to rule out a clot
I had the choice of going back there to tomorrow to the radiology dept right on the Hospital/Cancer ctr campus, or going (on my way home) to the imaging unit at the hospital's satellite/urgent care ctr in another medical complex. So I opted to get it done on my way home instead of interrupting another workday. They said everything looked OK, so I guess I'm still going to be taking "the pills"
Hollyann
<font color=blue>ZJO for just today!<br><font colo
- Joined
- May 24, 2004
- Messages
- 3,744
Hi Everyone! I wanted to check in before I "check-in"....I'm headed to the hospital - 6am check in time.
I hope to be posting today - with good news - but if I don't...anesthesia makes me real sick, so I'll be on as soon as I can!
Take care and thanks for offering me such a warm place to rest my worries...
I hope to be posting today - with good news - but if I don't...anesthesia makes me real sick, so I'll be on as soon as I can!
Take care and thanks for offering me such a warm place to rest my worries...
laurabelle
DIS Veteran
- Joined
- Feb 1, 2003
- Messages
- 4,094
~~~*** 
GAGWTA sistas ***~~~
Hollyann- If you read this before you go...I have trouble with getting violently ill from general anesthesia and for my last surgery in April, they gave me a motion sickness patch to wear for 3 days and it worked! I only felt a teeny bit nauseaus for a little while one day, that was it!
Praying all goes well for you today...
MerryPoppins & Ann - My G.I. doc is a young hottie! It was distracting at 1st, but now that I've spent so much time with him, it's like hanging out with my brother, lol!
I went to the Komen MD tea Sunday with a bunch of my sistas, and sat next to Lisa Porter all day. She was doing great and looking beautiful.
Lisa, me, Suzanne
Here's her latest update since then:
http://www.lisawillsurvive.com/
GAGWTA sistas ***~~~Hollyann- If you read this before you go...I have trouble with getting violently ill from general anesthesia and for my last surgery in April, they gave me a motion sickness patch to wear for 3 days and it worked! I only felt a teeny bit nauseaus for a little while one day, that was it!
Praying all goes well for you today...
MerryPoppins & Ann - My G.I. doc is a young hottie! It was distracting at 1st, but now that I've spent so much time with him, it's like hanging out with my brother, lol!
I went to the Komen MD tea Sunday with a bunch of my sistas, and sat next to Lisa Porter all day. She was doing great and looking beautiful.
Lisa, me, Suzanne
Here's her latest update since then:
http://www.lisawillsurvive.com/
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