Repost from the Ovarian Cancer National Alliance Johanna's Law

THE OVARIAN CANCER NATIONAL ALLIANCE  APPLAUDS ENACTMENT OF JOHANNA'S LAW: THE GYNECOLOGIC CANCER EDUCATION AND AWARENESS ACT Washington D.C. - December 23, 2010. The Ovarian Cancer National Alliance is pleased that the President has signed and enacted Johanna's Law: The Gynecologic Cancer Education and Awareness Act.  The 2010 version of Johanna's Law continues to authorize the Centers for Disease Control and Prevention (CDC) to develop and implement campaigns to raise awareness and educate women and medical professionals about the signs and symptoms ofgynecologic cancers.  The law allows the CDC to work with national organizations to leverage public-private partnerships and avoid duplication of services and materials.  Further, in order to advance these efforts, CDC funding may be available to support public or private non-profit organizations in their efforts to increase awareness of gynecologic cancer symptoms. The Ovarian Cancer National Alliance continues to work with Congress to increase funding for - and support authorization of - Johanna's Law.  This is a reauthorization of a previous law.  The law was originally enacted in 2007 and provided up to $16.5 million over three years to the CDC for awareness and education through a national public service campaign that includes written materials and public service announcements. The CDC-led campaign, Inside Knowledge: Get the Facts about Gynecologic Cancer, seeks to raise awareness of the five main types of gynecologic cancer:  ovarian, cervical, uterine, vaginal and vulvar.  Since 2007, champions and advocates worked to secure funding to implement the law through the annual appropriations process. Rosa DeLauro, Representative from Connecticut and ovarian cancer survivor was one of the champions of the bill.  "No one should have to depend on luck, and this bill will help to educate women, raise awareness of health care providers, and ultimately, save lives," she said. "As a cosponsor, I am very pleased with the passage of Johanna's Law. I believe it will help inform young ladies as well as physicians about gynecological cancers," stated Representative Dan Burton. "It is extremely important that this be caught early. That is why this law is so important, because it gives women the opportunity to find out about the problems they may face so their survival rate can be increased substantially. A lot of women have lost their lives or had their lives shortened because they were misdiagnosed or the cancer was not noticed at all. This legislation not only improves awareness for the public but also for professionals in the medical field." According to Dr. Karen Orloff Kaplan, CEO of the Ovarian Cancer National Alliance, "Johanna's Law is absolutely essential because it provides for robust educational programs for women and those who care for and about them - the only way currently to reduce the number of deaths from this hideous disease." Death rates from ovarian cancer have remained unacceptably high for more than 30 years; currently, fewer than half of women survive five years from diagnosis.  Because there is no reliable early detection test, awareness of symptoms is key to detecting ovarian cancer.  "Because ovarian cancer is the deadliest gynecologic cancer, it is crucial that the message about symptoms be front and center in this campaign." The Ovarian Cancer National Alliance is the foremost advocate for women with ovarian cancer in the United States. To advance the interests of women with ovarian cancer, the organization advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols.  The Ovarian Cancer National Alliance educates health care professionals and raises public awareness of the signs and symptoms of ovarian cancer. The Ovarian Cancer National Alliance is a 501 (c) (3) organization established in 1997.

Ovarian Cancer National Alliance 910 17th Street, NW Suite 1190 Washington, DC 20006 (202)331-1332 ocna@ovariancancer.org

Vocational Rehabilitation Update

Fabulous day with UW Voc Rehab department.  I now feel a sense of hope and confidence that there may be work I CAN do.  I met with a wonderful woman who was kind and sincere.  She took some time to warm up the conversation with nice holiday talk and then proceeded to discuss WITH me my needs and wants.

After at least an hour of talking about my vocational history, medical history, and potential hurdles we created a workable plan of action.  First thing being first, I have nothing to wear to an interview.  She will reconnect me with the state DVR to assist with wardrobe and possible free computer training.  I am going to spend some time on my own laptop to get re-familiar with the basics.  I'll probably need to be re-tested on my computer skills...ugh.  I've never really been a computer "expert", but I do learn new tasks fairly easily (maybe I need a little more time now than in the past).

The ideal scene is for me to first land a part time job that has afternoon hours, that's not sales and in a low-stress setting.  I expressed that because of my fears of recurrence and difficulty working under high stress levels, it was really important that I work with/for people who actually like me.  It sounds so "grade school" but at the end of the day we spend 30% to 50% of our time on job related activities.  That being said, why would I want to spend my last few years in an environment that's really stressful or around negative people who don't like me.  I just don't want any part of it.

I am not going to compete with anyone for a CEO job, not now.  In the past, I had dreams of owning my own company and having a stable retirement.  I could still start a non-profit group that helps women with ovarian cancer, and I'm sure I will, but I can't do that without first being stable myself.  I am not planning on using my job to fulfill my social needs, I just don't want to work around a bunch of sharks.  I want to have the chance to enjoy work for once in my life  ;-)

When it's determined that I can handle part-time work, the goal is to progress to full-time work.  That could be either growing the current part-time to a full time, or getting a new full-time altogether.

All this will depend on how or when a cancer recurrence appears.

I let her know that ideally I want a job where I work from home. If I work from home and have flexibility with my projects, then if I have a recurrence, I can restructure my workload around chemo, etc.

If I don't get the ability to work from home, then I run the likelihood of losing my job every time I get a recurrence.  That I cannot bear, I just don't want to do that.  Can you imagine?  Our economy is really not in the best of health, as everyone knows, so the last thing I need is to have to find a new job every time I finish a chemo program.

Here's where I find myself wondering why I never got married. I always wanted to be married, but no guy ever wanted me that much, so I'm alone.  I have my mom, dad, sister, brother and aunt.  I have a few good friends.  But I am alone, for the sake of my personal life.  It would be so wonderful if I had a hubby who took care of me, but I don't.  So I will forge ahead and do the best I can.

That's a whole new area of depression, that I don't want to talk about right now.

Anyway, I'm on the right track.

Be Love

Avastin may help Ovarian Cancer Patients

http://www.cancernetwork.com/ovarian-cancer/content/article/10165/1739232?GUID=F465BF3C-0BD5-404E-A2A8-C0BF422F4322&rememberme=1

Oncology NEWS International. Vol. 19 No. 11

 

Bevacizumab offers new hope to ovarian cancer patients

By FRAN LOWRY | December 4, 2010

---

Results of ICON7 trial will influence discussion of treatment options between oncologists and patients.

Early results from the ICON7 trial suggest that adding bevacizumab (Avastin) to standard chemotherapy in women with newly diagnosed ovarian cancer reduces the risk of disease progression during the first year of treatment.

The findings from the large, multicenter, phase III trial were announced at ESMO 2010 by ICON7 lead investigator Timothy J. Perren, MD, a consultant medical oncologist at Leeds Teaching Hospitals NHS Trust, UK.

Ovarian cancer initially responds very well to surgical treatment and chemotherapy, but the benefit is short lived, Dr. Perren said. "More than half of the patients go on to develop recurrent disease from which they will eventually die, despite our best current treatment," he explained. "For the women we have included in the ICON7 trial, the average time to development of recurrent disease is about 18 months and the average survival time is about three and a half years."

Bevacizumab has been shown to improve outcomes in breast and colon cancer. To see whether it worked in ovarian cancer, the ICON7 investigators randomized 1,528 women (median age, 57 years) with high-risk early- or advanced-stage epithelial ovarian cancer, primary peritoneal cancer, or fallopian tube cancer to one of two treatment regimens after their surgery.

Women in the control arm were randomized to six cycles of standard chemotherapy (carboplatin AUC 6 and paclitaxel 175 mg/m2) alone given once every three weeks. Women in the research arm of the trial were randomized to the same chemotherapy regimen given concurrently with bevacizumab (7.5 mg/kg) for six cycles, followed by maintenance bevacizumab for 12 additional cycles (abstract LBA4).

At 12 months, the risk of developing further progression of ovarian cancer was reduced by 15% when compared with the risk of progression seen with chemotherapy treatment alone. The effect of bevacizumab was strongest at 12 months, but then fell over time. Overall, the median progression-free survival in the control arm was 17.3 months vs 19 months in the research arm (P = .0041), Dr. Perren reported. Bevacizumab appeared to have a stronger effect in patients with a particularly poor prognosis, he added.

Dr. Perren also noted that the drug was well tolerated by the patients, with high blood pressure as the most common adverse event related to bevacizumab. Eighteen percent of the patients required antihypertensive medication. In comparison, 2% of women in the standard chemotherapy arm developed high blood pressure necessitating treatment.

The results from ICON7 support the findings of the Gynecologic Oncology Group (GOG 218) trial that were announced in June at the 2010 American Society of Clinical Oncologymeeting, Dr. Perren said (ASCO abstract LBA1).

"This is the first new drug in first-line treatment since the mid-1990s to show an improvement in outcome for ovarian cancer so it is a very big step forward," he said. "The results of ICON7 and GOG 218 will undoubtedly influence the discussions patients have with their oncologists, but probably more than that, it is going to influence the next generation of clinical trials. It is not possible to ignore these data."

Psychologist moved me to January...Christmas thoughts

Feeling sleepy literally right now, so I hope I don't bore anyone.  Good day to you.

My psychologist cancelled today because she is ill, and they won't let her work in that condition.  The cancer center has high infection control procedures, so I'm just hoping she gets better soon.  This though has thrown me a bit of a curve ball.

My next appointment is Jan 5th 2011.  I'll be paying full price for the consult, and I really didn't want to do that.  My deductible is $2500, so I'll be spending money no matter what until I reach that number, it's just a downer.

I'm not sure yet if I need regular visits, or if a free local support group will suffice.  So I may just skip the psychologist altogether and see how things go with voc rehab.

Part of my depression is that I have no job waiting for me.  The down economy scares me so I am relying heavily on help from voc rehab.  I don't even have a dress or suit to wear to an interview.

I stick to my beliefs that there are no accidents and need to keep my faith clear and strong.  I just need a little help, a little nudge, a little more energy, and the right place to work.

I did my 20 minutes of quick exercise activity, felt good.  I just ran in place and did some aerobic movements to get the blood pumping.  My arthritis is acting up, the soles of my feet hurt..............but can't let that stop me.

I'm so excited for Christmas, still need a special gift for mom.

I'M TRYING TO  LIVE AS IF THIS IS MY LAST CHRISTMAS.  So I'm wanting to get out the cards, and presents to special people.  I guarantee you members of my family are frustrated because they don't want me to spend any money, they just want me to save my change.  I am so grateful to have such a protective family and they are right, I should save all my money.

But this Christmas was not too expensive, really.  I have total faith that God is taking care of me.  It's going to be OK.  I will not be a drain on my family and will be able to take care of myself.............

But at the same time, what if this is my last Christmas?  I could have a relapse before next Christmas and it's possible treatment won't work.  So today is the day to give, not waiting until I'm earning more money.

That's the problem living in NED land.  Nobody can give me any solid answers so I can't make any solid plans or decisions.

Christmas is the most special holiday for me.  I love Christmas.  Easter is hard for me, I just really get emotional, and it's just not the same.  It's a greater joy, on Easter, but the week before Easter and Lent is a lot of work and inner soul searching.

So Christmas is just joyous and a time for freely giving.  I just want to give what I can.

Love you.

Merry Christmas

Good News

Hi,

I am so relieved that my CA125 is still at 10.  My pelvic exam went well too.  I'm feeling more secure with this news and am ready to see my psychologist tomorrow.  It's weird, I still feel depressed, and tired, but less heavy than before.  This is the life of being NED (no evidence of disease).  You live in blocks of time, until the next test.

So for now I will relish the joy of this good news.  Have a beautiful day.

God Bless and Merry Christmas

The holidays

Merry Christmas everyone.  This is the time of year for joy, love, forgiveness and peace.  This Christmas season is so different from last year, and I'm glad.  I get to enjoy shopping.  I also get to reflect more on God's blessings.  My online ovarian cancer group lost another sister today, so sad.  The grace is that she is at peace, and no longer in pain.

Everyday we lose a dear sister, it's just so difficult to understand sometimes.  I feel a thousand emotions all the time.

For me, I am really wanting to make the most of it.  I'm putting more thought into my little gifts and really really praying that everyone just has fun.  I want to hear more laughter than ever before.  I am so lucky that I have such an amazing family.  By the way, I was happy to send Christmas cards to my surgeon, oncologist and favorite chemo nurse.  I didn't get to do that last year, I was too out of it, really.  If you know someone on Chemo, offer to help them with cards and thank yous.........it will really help them.

I have four doctors appointments in the next 5 day run.  I will find out tomorrow the results of my latest CA125. I will also see my psychologist on Friday for the first time.  Monday I get my hearing checked and have another appointment with vocational rehab.  I'm very fortunate to have these opportunities.

I finally got my new glasses, which I really needed. I couldn't read a book without a magnifying glass....sigh.

I'll be posting more as we get closer to Christmas and fill you in on the results of my appointments.

My main message today is that we only have a few days left before we celebrate the birth of our Lord Jesus Christ.  Everyone in the world needs to have a chance to smile and feel true love.  Jesus does love us all, and allow Him to comfort you during this time of great celebration.

God's Blessings to all!

Doctors can be real #1 idiots

I belong to an online support group for people effected by ovarian cancer.  Members consist of patients, caregivers, incognito health professionals, friends, spouses, family etc.  Most of the members are female patients.  Its fairly common that at some point you learn that many women on the site mention that their ovarian cancer was completely missed altogether or just very difficult to diagnose.  I have a new friend who had the worst gynecologist ever it seems.

Doc is a friend of her husband, and I think that because of that, he didn't show this woman the respect she deserved.  She had been going back and forth and back and forth to him, literally telling him that her symptoms sounded like ovarian cancer and he refused to do a CA125 blood test.

He kept telling her it was menapause, or it was fibroids, or it was this or that or whatever.  He did the same to her that my gyno did to me.  He said she was too young to have ovarian cancer and laughed it off.

I was fuming mad when  I had read it, and wrote back a little about myself and our common experiences.  She "friended" me and we e-mailed a little more.

MY FRUSTRATION IS THAT IF A WOMAN SAYS TO HER GYNOCOLOGIST OR PCP THAT SHE WANTS A CA125, AND SHE HAS SOME SIGNS OF OVARIAN CANCER, WHO IS THIS DOC TO DENY THE TEST??????????????  WHO IS HE/SHE TO PLAY GOD?????????

If I would have know the symptoms of ovarian cancer before I was diagnosed, I would have paid for the blood test myself, screw my doctor!  I'm totally serious.  Every woman should have the right to have this test.  I KNOW THE CA125 IS NOT TOTALLY RELIABLE, BUT IF YOU HAVE OTHER SYMPTOMS, THE TEST SHOULD BE DONE, PERIOD.

This could literally save a life!  Do they teach medical students about ovarian cancer?  Have they just given up on us?  Why are they so complacent to just let it get to stage IIIC?  My friends doctor kept telling her it was pointless anyway because if they found it later it would be too late anyway!

What an ass.

I try not to use profanity, but really.  She could have had early stage ovarian cancer treated and not live her remaining life in fear.  Instead she was treated as an advanced stage patient, and even being NED/remission, her chances of recurrence are incredibly high.  So are mine.  We think about it all the time.

I don't want to live the rest of my life worrying about recurrence, and I am getting help in this area.  I want to be happy.  I want to be joyous and loving and happy and fun to be around.

At the same time I want to create a huge punching bag that has all the names of the docs who have negligently allowed women to advance into later stages of ovarian cancer, and give all those women a chance to pounce!

Thats the problem.  Underneath all this healing simmers ever so slowly a burning anger that this could have been prevented.  I have forgiven almost all of my doctors, except for two.  I'm close to forgiving them.

I'm hoping to finish that by Christmas.  The docs are just plain idiots, and really don't listen to their patients.  We can't continue to allow this to keep happening.  We just cant.

Be Love and God Bless

ERT and my naturopath

Hello all,

I read one of the articles from the previous blog's link, about estrogen replacement therapy.  Please take time to read.  I am so happy that I discontinued my estradiol patch about a month or so ago.  I just had this feeling inside that I needed to stop.  Because I am also BRCA 1 mutation positive, eventually I may take Tamoxafen to help decrease the chances of breast cancer.  You cannot take Tamoxafen while taking estrogen.  Plus, according to the article, estrogen can increase the risk of recurrence and also increase the speed of destruction.

That's just plain bad news.

So I am having hot flashes every hour or so, and it's not so fun.  The only upside is that the overall temperature is "cold" and I can just go outside for a minute and cool off.  Hopefully this will pass sooner than later, but it's nothing compared to a recurrence.  I'll deal, no biggie.

My ND (Naturpathic Doctor) is fantastic, he's just what I needed on my team right now.  I think everyone should see him.  Prior to seeing him, I had to complete a detailed questionnaire, as usual.  But it asked really good questions about my habits, body and what was important to me.  Wow.

In his office there were some awards.  He sits looking out onto the water in Puget Sound, nice.  The staff is all smiley and friendly.  Perfect.

After answering 20 or 30 very specific questions about anything you can imagine, he wrote out a very simple plan to get my GI tract back in check.  Yippie.  I do have 4 new supplements that range from enzymes to multivitamins.  I also must eat several cups of fruit ( cantaloupe or pears etc) per day.  The fruit is for fiber.  One of the supplements will help to grease my GI tract to help things move along more smoothly.

The most important thing was to increase my exercise.  He insists that I move briskly for 20 minutes every day.................aaagh.  He prefers that I walk, but any really fast moving that gets my heart pumping is what he wants.  I didn't ask "why" because I know why.  I need to flush out toxins and increase my endurance.

I have other issues to face but he just wants to deal with digestion for now.  That is what I want to do.  He affirmed that healthy absorption of nutrients can help improve my immune function, which would hopefully fend off disease.

Funny thing, he also wants me to over-chew my food.  He said "chew your soup".  This is because the salivary enzymes are a critical part of the digestion process.  I've always been a slow eater, so no problem.  I just need to be careful I don't look like a cow chewing her cud......ha ha.

I am to see him again in late January.

I don't want to invest all my hope in this area of my treatment, but it's so so so so so important to me that I do whatever I can do to help myself be healthy.  I can control what I eat, how I eat, etc. I can't control my bone marrow production, you know what I mean?

AND.....being full of energy, feeling good, appearing healthy are all part of returning to being a productive member of the working population.

It just really gets me down that I'm not healthy sometimes, healthy people have no idea how lucky they are.

If I were healthy, I could do anything I wanted.  I could climb rocks, I could be a waitress to earn extra money.............but being like I am, my options have narrowed.  So I will do my best to see the glory and sunshine, because I do know I'm meant for something.

I also was able to go to church tonight for a mass to celebrate Virgin Mary. Last year I was not able to go. It felt so nice to be able to go to church.....................so nice.

Be Love and God Bless

http://myemail.constantcontact.com/In-The-Know-With-OCRF--Research-Report-2010.html?soid=1102150261756&aid=qjObaaPCPzk

Hello everyone. Here's a link to some of the latest research on ovarian cancer. Later I will blog about my wonderful trip to the naturopathic doctor.

Be well

http://myemail.constantcontact.com/In-The-Know-With-OCRF--Research-Report-2010.html?soid=1102150261756&aid=qjObaaPCPzk

RIP Elizabeth Edwards

Rest in Peace dear Elizabeth.  One day the cure for cancer will be allowed in the hands of oncologists who want to save lives.  You are a beacon of hope and love, grace and strength.

I believe that stress can cause cancer.  I say this only in that you endured much stress the last few years, and your body just couldn't take it any more.  I am so sorry.  God is with you now.

Elizabeth Edwards' illness worsens - latimes.com

Dear Elizabeth,

You have been an inspiration to me and many other women. So strong and brave. I am so sorry to hear the news that you are no longer receiving treatment for your breast cancer. I pray that God's angels carry your pain away, and that this precious moment in time with those you love is sheltered from fear and cold. God's Blessings to you.

Elizabeth Edwards' illness worsens - latimes.com

ASA : History of Medical Cannabis...what do you think?

Hello from Seattle,

This information about the history of Medical Cannabis is quite interesting. I have not made up my mind yet on the whole mowi-wowi thing. But it does seem that there is enough evidence existing that indicates medical marijuana can be helpful to some cancer patients. I think if my last hope were medical marijuana, I'd have no choice but to try it. When your life is literally on the line, suddenly your boundaries change, your willingness increases and you think beyond the ordinary.

I pray that whatever is used to treat all cancer patients pushes them into full remission, but that is not the case. I hold no judgement or opinion on people who use medical marijuana. I just pray that if it's used, that it works!

Be Love and God Bless

ASA : History of Medical Cannabis

Someone to talk with

Finally today I received a call from the psychologists office.  Yay.  I need to address my anxiety about being in limbo land.  For the last two days I have woken up at 5am and tossed and turned, falling back asleep around 8.  I was too tired to get out of be at 5am.  Unfortunately I also then proceeded to sleep until 11:30 or noon.

Currently I need to take Paxil and Lorazepam.  Once again, like clockwork, I had a wave of nausea and anxiety flow through me around 2:30 today.  I just don't understand it.  I literally walk in circles, not knowing what to do next, feeling like I'm going to throw up any second.  But after I take my Lorazepam, it calms in about 20 minutes or so.

I'll see the psychologist in the next week or so.

I was able to get an appointment with a Naturopathic Doctor for next week, just under the wire in terms of insurance coverage.  (January is just around the corner and I have a high deductible).

I don't have that Christmas spirit yet, but hope to soon.  Maybe mom and I can get our tree up soon, that always helps.  Little extra money makes shopping hard.  All we're doing this year is buying for the kids, it's just too much.  I'd love to be able to pay for a big family getaway, so we can all get some relief from our ills.

Peace and God Bless

Progress with resume, still boxed in

I feel like there is a screw at the bottom of my feet, and I'm spinning in circles, locking myself down.  It's just a terrible feeling.

Yesterday I went to get my hand splint/fitting for my RA, and for about an hour prior to my leaving, I was anxious, nauseous, and had abdominal pain.  I took a lorazapam and 2 colace, had some yogurt and just sat still.  This sense of panic/nausea consumes me every day around the same time (between 2 and 3pm).  How will I manage this when I get some work?  I worry that a recurrence may be under way, but then worry I worry too much.  HA

Made it home fine, splints are awkward, but necessary.

I now have my printer and have updated my resume.  It's sitting here with a huge gap, begging the question "what did you do since July of 2009?"  I have a feeling that my only good strategy will be to take a strong, bold approach, and tell them I won a battle with cancer and now I'm back.  They don't need to know that there's 80% chance it will return, heck I probably didn't need to know that either.

I had nightmares last night, woke up at 5am, fell asleep again at 8am and woke up at noon. Not good overall.  My abdomen is tight, and I feel like lead.  So I managed to review some more web based information about "ticket to work" and found nothing helpful. 

All I really need is a part time job in my neighborhood, that is not stressful or heavy duty, for now.  I feel like I can't move from this couch and "get out there". 

I was supposed to go to the cancer center to receive holy communion today, because I missed church this past weekend.  The cancer center offers communion on first and third wednesdays of each month.  I'm feeling bad, totally incapable, for missing that.

My joints hurt more today too.......................I wish Mom could have a beautiful retreat and get her "artist on" again, and I wish I could go on a retreat to get my "life on" again. 

So if you are in remission and looking for a new job, I feel for you.  The resources are limited.  Hang in there.....one day at a time, I guess.

I guess today I am blabbering, because that is how I feel today.  Need umph!

Be Love and God Bless

That Girl...tales from the edge: Allowing myself the luxury...

Perspectives from a woman who is BRCA2 mutation positive, electing a prophylactic mastectomy.


That Girl...tales from the edge: Allowing myself the luxury...: "It is always interesting to talk with someone who doesn't quite know my full story...I will always feel the need to quickly clarify I never ..."