Want to Help?

When you are sick with a disease like this, you hear everyday how much people want to help.  They are always saying things like , "Just let me know what I can do to help!"

First of all, if you know me at all, you will know this is not easy for me to do.  Prior to my diagnosis, I rarely ever asked for anyone to do a thing for me.  I prided myself on being independent (to an extreme degree).  I've never really even reached out post diagnosis, beyond asking family to help out with Katie, or for someone to feed the pets, but here it is --  I desperately need some help!  If you are serious about wanting to help, read on.  If you are just saying it because it's the right thing to say, stop now, because you won't enjoy hearing this, it's not a fun help or anything you'll find interesting.  

WHAT I DO NOT NEED:

My goal here, is NOT to make anyone feel bad for not helping.  You do not have to tell me why you can't help.  In fact, PLEASE AVOID DOING THIS.  I hear it every time I post anything that makes someone feel guilty for not helping, and I really do already understand and know that life goes on outside of cancer and you are busy living your life, working, and taking care of your own obligations and responsibilities. I was on that side of the fence not so long ago, and I had the same types of day to day things to deal with.  If you KNOW you are too busy to do anything extra, that's fine! Leave it at that.  If not, and you are really looking for a way to help out, read on.

Metavivor Send's Letter to Kohl's President

Kohl's used the Metavivor Pink elephant in the room for their Pink Clothing campaign benefiting low stage cancer.  See both ads side by side above.  Metavivor(ad on the left) is a grass roots movement trying to bring awareness to late stage breast cancer which is uncurable and often ignored. We use the pink elephant to represent the way we feel as people living with this uncurable stage of breast cancer that only receives 3% of the money raised by pink ribbon product sales and walk/run funds, and accounts for 100% of the deaths from breast cancer. 

Read Metavivors Letter to Kohls Here

Tons of info (with sources) on the Carbohydrate Conjugate Vaccines

I just found this great article that goes into detail (with reputable references) about the carbohydrate conjugate vaccines for metastatic breast cancer.  It goes into detail about how the KLH and Globo H advantages over other types.  All of these are factors in the trial I've chosen.  This is a bit advanced due to medical jargon, but worth the look ups if you are seriously considering a trial or interested in the way it works and why I chose this particular subset of trials.

Carbohydrate vaccines as immunotherapy for cancer

Vaccine Trial Preliminary Scans Completed

I just got back from Houston.  I went down to get the preliminary scans done for the vaccine trial I'm interested in doing.  My husband needed to work (he's out of paid time off), so I had to make the trip for the first time alone.  It was a little scary at first, but I summoned that inner strength and was able to get through the day.  If you haven't ever done this alone, you should try it some time.  It's empowering and it makes you really appreciate those who normally go with you.  It also gives you a lot of time to think and process your emotions without interruption if you have to commute a good distance to do it.

Resources for Metastatic Breast Cancer Care Givers

My husband expressed some interest in maybe getting involved with some other MBC caregivers for support and possibly to organize some ways to help the MBC cause.  He's already agreed to talk to several of the people he knows who own businesses and try to get the metavivor ribbon put on their buildings in lights in pinktober to draw awareness to our cause.  (Friend him on facebook if you want to assist with this and get more details).  I put out a request on many facebook groups, forums, etc. , so this may be repeat information for some of you.  Several of our caregivers have already "friended" each other on facebook and plan to look at forming a group or possibly participating in the existing private group on facebook.  If any of you have a caregiver who may be interested in participating have them contact or friend my husband on facebook and/or join the closed group that already exists.  We need to take care of those who are so supportive of us!  The more able they are to share their experience and vent the better they will cope.  Cancer effects more than just those who have it!  Thanks to all those who responded and helped with this effort!

Here's the list of caregiver resources I acquired tonight. Click on these to view:


Closed Caregivers of Metastatic Breast Cancer Patients Group/

Friend my caregiver - Jesse Townsend

Excellent tips for caregivers in our video, "Cancer: A Family Matter."

General Cancer Caregiver Telephone Support from SHARE

Getting Ready to Go Down to MD Anderson

Guess I'll be heading down to MD Anderson tomorrow after work.  Have a full day of scans and lab tests on Friday.

Just received a call from the person over the trial and she is going to get pre-approval with my insurance, so that if I qualify after all these tests they can give me the info I need on what my portion will be.

Just called the oncologists nurse at MDA to see about getting started on the Lupron down there (to shut down ovaries so I can take the femera) and waiting on a return call.  Hoping to squeeze it in sometime that day I'm down there.  She was in a meeting and should be calling me back.

Also made a call to the social worker to see if she can find me a facility locally willing to do the routine stuff in the future here locally.  Left a voicemail and should be getting a return call.

Anyhow, wish me luck.  I'm going down alone it appears, but I know you'll all be with me in spirit!

Taking Control of Your Care and Answers to Trial Questions

I "fired" my local oncologist today.  OK, I didn't exactly fire her, we just agreed we had different ideas on the direction of my care.  She is not interested in dealing with trials.  She prefers to stick to a strict path of standard of care (FDA approved) drugs.  I know that these drugs prolong life for whatever limited amount of time they can keep your cancer in check (average 5 years) but none of them have good success rates for long term survival and none of them have the ability to cure metastatic cancer.  So let's just say we agreed to disagree and we wished each other the best (even hugged!) and said our goodbyes.  I got a farewell Zometa treatment and chose to move on.

Interview: Amy Huang, General Manager, OBI Pharma, Taiwan

Text below from an interview with the bio-pharmaceutical company, OBMI Pharma, which now owns the rights to OPT-822/821 (they renamed it when they bought the rights).

Breast Cancer Treatment Begins Clinical Trials in Taiwan

Breast Cancer Treatment Begins Clinical Trials in Taiwan:



'via Blog this'

Scans on Friday

I have a full day of scans, blood tests, you name it, at MD Anderson on Friday 2/21.  I'll be leaving after work (after 3pm on Thursday 2/19) and coming back on Saturday 2/22. Jesse has to work Friday, Saturday and Sunday and can't go.  I can go by myself, but if anyone wants to go along, it would be nice to have someone there.

Results of OPT-822/821 (822-001) Phase 1 Trial

Here is some information I found on the phase 1 trial of the clinical trial I am considering.  Mine will be the phase 2 of this same trial:

MSKCC completed Phase 1 safety studies of OPT-822/821 in prostate cancer patients and breast cancer patients in 1999 and
2001, respectively. In these studies, OPT-822/821 appeared to be well tolerated and to stimulate responses to tumor antigens.
Twenty-one of 27 metastatic breast cancer patients treated with OPT-822/821 in the study survived after four years, with 48% of
patients surviving more than nine years following completion of the Phase 1 safety study.

Info on the Vaccine Trial

Info on the trial they are asking me to participate in is located here:

http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2012-0408

Vaccine trial

For those of you waiting to see which trial...here's the front page.  Will post more later...but this us a sneak peek for those who are more mbc savvy.

Today's Lesson

Sometimes you just have to sit back, let things go, see what happens, and hope for the best.

You always have a choice and the choice can be power

MD Anderson’s Dr. James Allison Wins 2014 Szent-Györgyi Prize; Yet Another Award for Cancer Immunotherapy

Immunotherapy is the concept behind the vaccine trial I am going down to MD Anderson for this week. Reading the article below, about yet another award going to a researcher at MD Anderson, gives me great hope and confidence that I am going down for the right therapy at the right place.  Perhaps this will be the trial that I am going down to try.  It's already showing benefits in metastatic melanoma, and they are now testing it on other types of cancer. Always hope that there is a possibility for metastatic breast cancer cure in our lifetime.

 

Feb 10, 2014 10:24 am | Mike Nace
MD Anderson cancer immunotherapy pioneer Dr. James Allison has been awarded with yet another research award for his recent cancer therapy research, this time from The National Foundation for Cancer Research (NFCR). The Foundation announced last week that Dr. Allison, Chairman of the Department of Immunology at The University of Texas MD Anderson Cancer Center, has ...

Read Article

18 things mentally strong people do

Repeat after me

Heading Down to MD Anderson this Week

Heading down to MD Anderson again this week.  This time it's for a possible vaccine trial.  I'm excited about a possible chance for my own body to fight this disease.  I'm going down on Friday and will try to post something if I have internet access that evening or the next day giving more details.

I am here today

Very Inspirational Video Featuring SarahM Kadcyla

A very inspirational video about a young metastatic breast cancer patient.  Her hopes and fears are ones I have experienced myself.

Understanding Metastatic Breast Cancer

Cancer Advocacy Group Using Smear Campaigns

I was reading through a blog I found on the internet and stumbled upon an article about a smear campaign the Pancreatic Cancer Action advocacy group has launched.  How low is it to downgrade another's disease to promote your own?  I see no benefit in this.  Cancer is an awful disease regardless of type.  Why would a group advocating for more research and funding for cancer belittle or degrade another group who has succeeded?  I think they should instead look at the methods the breast cancer awareness advocates have used and find ways to incorporate the same types of campaigns.  Dirty tactics like this may bring publicity, but it disrespects those with other forms of the same disease and will most likely discourage people from contributing to their organization.  I wonder how the other pancreatic cancer advocacy groups feel about it?  I know there is  a major uproar in the metastatic breast cancer community over it considering we are also trying to bring awareness to the lack of funding and research.  I'm proud to say that all the advocacy groups for MBC that I'm aware of are using more respectful methods to campaign.

Below is the ad they used to promote pancreatic cancer, and a screen shot of my comment, which is currently awaiting moderation(and will probably never be seen on their website).

Inspiration

Faces of MBC

Read More:

The Big Thief

Learn More

         

World Cancer Day February 4th

Click Here to Learn More

A Good Resource to Learn More

Stumbled across this amazing resource.  A guide to help those who want to know more about their cancer or some one they care about's cancer.  Tons of resources and links.  Thank you Steve for leaving this behind for us.

http://www.cancerguide.org/