Preparing for scan results

I'm sitting here trying to mentally prepare myself for the phone call I have to make tomorrow.  I had scans done last Wednesday and still haven't received a phone call with the results.  My Scanxiety is at it's peak tonight.  I'm hoping that the results are good again so I can continue on this trial.  It really gets hard sometimes to come up with the courage to deal with things some days.  Prayers welcome.

Chemo #11 complete

I completed my 11th round of chemo today.  I had my day changed to Tuesday on the weeks I don't have to see the doctor.  Mondays have become rather busy and what should take a couple of hours was becoming an all day ordeal.  The change turned out to be a good one and we were in and out in a much more reasonable amount of time today.  I took my step mother, Christine, with me and enjoyed catching up with her during treatment.  I've only been home a few hours, but other than being a little tired, I'm feeling well.

Thursday, I'm flying out to DC for the advocacy project lead training.  I'm sure I mentioned previously.  I'm looking forward to it, but a little nervous about going alone.  Once I get there, I have an assigned roommate who is going to be in the same program.  I haven't met her yet, but think it will be nice to meet another like minded person who wants to make things better for those who have this crappy disease.  Christine Benjamin, from SHARE where I'll be volunteering soon as a helpline person, will be there also, along with some others from her organization.

Sunday, I'll be returning to DFW around 5ish and driving down to Houston so we can get on our cruise.  The cruise leaves Monday morning out of Galveston.  I'm really looking forward to it.

Scans to see how the trial and chemo are working are not going to be required until January.  I'm relieved and annoyed both by this.  It means I don't have to deal with it until after the holidays, but I'll still worry because I won't have scans to tell me it's working.  Always something to worry about with this disease I guess.

Abraxane chemo #10 complete

Another successful chemo treatment today without incidence.  I felt well enough to go to w
Whole Foods and walk tonight.  I'll be getting week 11 on Tuesday next week, if anyone would like to go.  I moved to Tuesday because Mondays are getting way too crowded.  Next week will be lab and treatment only, so hopefully won't take as long.

Multi-part article on what NOT to say to someone with Metastatic Breast Cancer

Multi-part article on what not to say.  This won't tell you what to say, but it will tell you what to avoid and why.  Yes, I hear these things almost every day from someone.  

http://metathriving.blogspot.com/2014/10/october-8-things-not-to-say-part-1.html?m=1

Coping with other people's reactions to Metastatic Breast Cancer

Metastatic breast cancer landscape report released

A report was released by the Metastatic breast cancer alliance to identify the needs of metastatic breast cancer patients.  Hopefully, this is the first step toward things actually improving. The Metastatic breast cancer alliance is an alliance of all the major players in cancer working together.  More info can be found on their website (mbcalliance.org).

Metastatic breast cancer landscape report

Good News and Video

Oncologist told me today that my CT and Bone scan indicate stable disease.  There is some shrinkage, but not enough to qualify officially as regression.  The bone metastasis looks like less to me, but the experts say it has not changed.  Either way, lack of PROgression is an awesome thing.  If it doesn't grow, it can't kill!

During chemo today, I recorded the script for this video one of my mets sisters is making.  It's a just a script we all read and I guess she plans to compile it all and put it out on  you tube to educate.  Here's what she asked us to do:

http://www.insertboobshere.com/mbc-video/http://www.insertboobshere.com/mbc-video/

Here is my submission of me reading the script:

New estrogen-related breast cancer mechanism detected

A previously unknown breast cancer-enabling mechanism has been discovered by researchers from the University of Illinois at Urbana-Champaign. The team's findings are published in the journal Oncogene.

Read more

Living Beyond Breast Cancer Conference in Philadelphia

I am heading back from the Living Beyond Breast Cancer Convention in Philly. I really enjoyed the convention, the women, and the speakers. I met a few new people and look forward to staying in touch with them.

On another note, I just found out the PINK craziness has already begun. Please read/share the following article. It appears that one of my Metastatic sisters was scheduled to appear on the Today show and got cancelled because she has her hair. Seriously?!?

Open Letter to Joan Lunden

Posted on September 26, 2014by Scorchy

Dear Ms. Lunden,

You are an inspiration to many women and, rightfully or not, by virtue that you developed this disease you shine a spotlight on women with breast cancer. To support one of your upcoming reports on the TODAY show, a friend was contacted to be on the show to talk about metastatic breast cancer. Well, she thought she was, but what TODAY show producers wanted, it turns out, was a sea ofexclusively bald women for a backdrop. When they learned she had hair, they told her not to show . Read More

Experts issue plea for better research and education for advanced breast cancer

Read more by clicking below:

Experts issue plea for better research and education for advanced breast cancer

Insomnia's Best Friend

Over the past 6 chemo treatments that I have completed over the past two months, I have come to a conclusion.  IV Decadron, aka generic Dexamethasone, is insomnia's best friend.  IV Decadron is a drug they give me prior to my chemo treatment.  It is a steroid that is supposed to help reduce side effects.  It tends to give me at least a full 48 hours of insomnia despite my best efforts to counter it. For example, tonight, even after dancing with the Lunesta butterfly and taking a muscle relaxant, I am wide awake.

Chemo Treatment #5 Completed and Scans Soon

I completed chemo #5 today.  I'm getting pretty used to it and not having a lot of extreme side effects anymore, just a few minor annoying ones like:  clumsiness from probable mild neuropathy in my hands (I can't seem to hold on to anything), numbness tongue, taste issues with several foods, including red meat, and my endurance is extremely diminished.

Next Monday will be my 6th chemo and I will completed two "rounds" of 3 chemo treatments.  The week after, a CT scan will be done.  This scan will give us an idea of whether the chemo is working.  The results will show that the tumors on the previous scan (the one I did before the first chemo) have either shrunk or progressed.

I think I have it bad, and then I read something like this

I think I have it bad, then I read something like this.  Grab the kleenex!

http://www.theherald.com.au/story/2540087/family-grateful-for-every-extra-day/?cs=303#slide=1

Breast cancer inhibitor found

Did a little research on this one and there is already a P38 inhibitor out there currently for Rheumatoid arthritis called Pamapimod.

http://www.utsandiego.com/news/2014/sep/07/breast-cancer-metastasis-ucsd-wu-karin/

I have fought the good fight

Today's Visit

I went in today for blood work.  They ran a CBC.  My WBC (white blood cells) and LYMPH (lymphocites) are back in the normal range.  These are the immune system related stats that were low last week.  This time, my HGB and HCT were below normal range.  These are the red blood cell stats that cause anemia when low.  My HGB is 8.0 and they said when it gets below 8.0, I have to have a blood transfusion.  They told me to eat foods high in iron and gave me a list (below).

Living Beyond Breast Cancer Fall Conference

We got our travel grants and are ready to go to the Living Beyond Breast Cancer Fall Conference.

Round 1 Abraxane and Neupogen shots completed

Round 1 of the Abraxane is complete.  The combination of Anakinra (the trial drug which also effects the immune system) and the Abraxane took a major toll on my immune system.  I was forced to take three days of Neupogen shots to force my bones to make more white blood cells.  It was rough, but I made it through.

Chemo #3 Completed

It's 3:44 am Tuesday morning and I couldn't sleep, so I thought I'd post about today's treatment.  I'm still on the trial and giving myself shots every day.  I'm starting to get local allergic reactions every time I do it now.  They say it's OK to continue and not a big deal.  They advised me to use some benedryl creme if it bothered me.

Abraxane Insert

I found the actual insert that comes with the chemo drug they have me on, Abraxane (aka nab paclitaxol).  It sounds pretty nasty on paper.

FULL PRESCRIBING INFORMATION ABRAXANE® for Injectable Suspension (paclitaxel protein-bound particles for injectable suspension) (albumin-bound)

First Treatment Abraxane

This first chemo took me a few days to recuperate from.  Today is the first day I've really been up moving around or doing much of anything other than what I absolutely had to do.  The chemo really wiped me out and I had some ongoing stomach pain that is a combination of the treatment side effects, liver metastasis and bone metastasis in my ribs.

Brain MRI Results

The nurse called....

BRAIN MRI SHOWS NO CANCER!

YAY!

Brain MRI video

Curious about brain MRI process?

The techs agreed to take some pictures and a video(in next post), enjoy.

MRI today?

Just got a call from my doctor's office saying my MRI is scheduled for today...2 hours from now. I asked why today and told her I had a house full of prior from Home Depot and she said she was told it was urgent.  Urgent?  That doesn't help me feel any better about this.

A lot going on today

I decided I didn't want to try to do the heavy cleaning, so I used the cancer card and called on Cleaning for a reason.  They are here now and are doing a great job so far.  You can even see Katie's floor!

Volunteer Calendar

I set up a volunteer calendar. Right now there are only a couple of days available. The times have not been put in either,because nothing is locked in. They won't schedule them out until they find out how well the first treatment is tolerated. Jesse is going with me to the first one because he is off work.  As long as things go well on 8/11, I was told they could schedule a few weeks out.  From what I was told, they will repeat on the same day weekly on a 3 weeks on, 1 week off, repeating schedule.

Where does it end?

I subscribe to several metastatic breast cancer groups on Facebook, and it seems like almost every day I see a post, similar to this one, regarding another sister who has passed or is in the last days of her life. I often search for the person on Facebook in an effort to remember this person as an individual and to try to piece together their story.  No matter how many times I do this search, I'm always amazed at what I find.

Chemo Help Anyone?

In a few weeks I'll be starting a weekly chemo treatment.  I'll need to go in every week for three weeks, then have one week off, then repeat this cycle.  This will be in addition to the doctor's visits, scans, etc that will be required for the trial.  Jesse will be able to take me on the days he has off (he's off every other Thursday), but has to work 7am-7pm on the ones in between.  I've already talked to them about the day and it will most likely be on Thursday afternoons.  I'm not sure how bad this will effect me and am not real crazy about having to go by myself and having to drive myself home.  I guess I can manage if I have to, but I really don't want to go by myself.  It's seriously lonely and depressing!

Advocacy Video for Meds

Here's a cute advocacy video encouraging people to read up on their meds and make sure they are not taking too much of something or something they don't need altogether.

Scan, Treat, Repeat

Doing my research

I've been doing my research as usual and found a nice college level video by a person who worked at Genentech for many years before she came back to teach and experiment.  This video is from 2007 and just gives the basics, but it goes into why blocking the inflammatory response can block cancer growth and metastasis.  If you can get through the parts that seem a little high level and hang in there, she tends to go back and sort of summarize after she gets past all the charts and details and it seemed to catch me up if I got lost or thought I wasn't following well.  I guess I'll be researching what process Anakinra uses to suppress inflammation this weekend for sure.

Nora Disis, MD - The Immune System and Breast Cancer

So Far So Good

I actually got the call I was expecting from Baylor Research today.  I am going to meet them tomorrow to sign off on the consent forms.  After that, they'll need to collect a blood specimen as a baseline, they will order the medicine (which they said takes about a week to get in), and they'll train us on how to do the daily shots.  Then I begin taking the Anakinra for two weeks, then start doing a weekly chemo on top of it.

I'm trying not to get my hopes up because the last two trials I tried to get into failed, but so far so good!

Today's Answers

I went in to talk to the oncologist today and she gave us the details on the next method of attack.  She is suggesting a standard of care chemotherapy drug, Abraxane (nab paclitaxel) plus Anakinra.  Anakinra is a drug that is currently FDA approved for reducing the pain and swelling associated with rheumatoid arthritis.  It is an interleukin-1 antagonist.  The theory is that IL-1 presence in the body contributes to tumor growth and metastasis.  Blocking IL-1 by using an antagonist would have the opposite effect.

Anyhow, I'm waiting to get disqualified... I mean I'm attempting to qualify for this trial.  If not, I'll just be doing the Abraxane.  I need to get the chemo on board to knock some of this growth back soon.

Click here to see the study sheet.

Living With Cancer: Parting Gifts

Well written article.  It's a tear jerker, though.

http://well.blogs.nytimes.com/2014/07/10/living-with-cancer-parting-gifts/?_php=true&_type=blogs&_r=0

Update and Upcoming Stuff

I just wanted to post a quick update on what is going on currently and what is coming up.  I spent the weekend in bed and am still on a liquid/soft food diet.  I stayed on pain meds and ibuprofen all weekend.

Today I'm back to work, so no pain meds.  We've had a lot of calls this morning because of people being out and my throat is getting sore from talking.  According to what I've read and been told, the radiation is still in effect in my body for 2 weeks after the final treatment (Friday) and it takes 4-6 weeks for the damage to heal completely.  So I'm probably looking at a few more weeks of this.

Third Time's A Charm, Right?

Today I completed another session of radiation.  This makes my third time to do 10 days in the past 5 years. Third time's a charm, right? I hope it is, because I'm seriously beginning to wonder if I'm approaching the lifetime maximum radiation exposure. Considering all the CT Scans I've had in the past few months + this radiation session and the two other ones I had previously, I would not be surprised.

I was discharged again with a certificate and a t-shirt.  But when you become a radiation vet, they know you already have the t-shirt, so they offered to give me another t-shirt for a family member or friend.  Jesse was the lucky recipient of my radiation t-shirt.  Congratulations, Jesse!

I'm seriously glad I'm done with the treatments.  The nurse said it will continue to be active for the next two weeks.  This means I won't be eating anything easily until my body kicks in and gets the cells repaired in my throat.  Today I was so hungry, that I bought a hamburger and picked the patty apart into tiny pieces.  It takes forever to eat it that way, but it definitely made me feel better!

Quick Update

Today has been rather hectic between working and doctor's visits, radiation, and cancer group tonight, so I'm going to keep it brief tonight because I haven't had time to do any research to really say much more anyhow.

I went in to see my local oncologist expecting to find out about, and sign off on the forms, for the Paloma-3 trial, but when I got there they had me scheduled with a PA I had never met before and he had no idea why I was even there.  After I gave yet another doctor a summary of why I was there and what I was expecting, he excused himself and went and called my oncologist on the phone.  He came back with a rather vague idea of what was going on and really couldn't answer any of my questions.

What it comes down to, is that I failed to qualify for the Paloma 3 trial because it is ineffective on the type of tumors I have.  That's about all I got out of him regarding that.  I plan to ask more questions next week when I see the oncologist.

I informed him I have been off treatment since the beginning of June and requested to know what was being recommended as the next course of treatment.  I was told Abraxane.  Abraxane is an IV chemo drug.  It is similar to Taxol which I had at the very beginning of all of this in 2009.  It was the first one I did for 12 weeks once a week and tolerated fairly well.  If you'd like a refresher on how that went, here's a link to a search that will show all the articles mentioning taxol:  Click here for links to previous Taxol related blog posts.

This time, I'd be doing it once a week for 3 weeks and taking 1 week off and repeating as long as it appeared to be effective.  It's a 2 hour process.  I'm seriously dreading it and really want to find out what made her choose this treatment over others like Afinitor which is an m-tor inhibitor that MD Anderson had suggested.  I'll know more next week when I get to talk to her.

Until then, I'll be reading up on it and looking to see what all options I have.  Here's the rough schedule they gave me today:

7/10 - Last day of radiation(8 down, 2 to go!)
7/11 or 7/14 - CT Scan
7/16 - Oncologist visit

Sore Throat and Liquid/Soft Diet

When I talked to my radiation oncologist before I started this she pretty much guaranteed me a sore throat due to the anatomical proximity of the cervical spine and the throat.  There is just no way to avoid hitting it and still radiate the majority of my c-spine.  She said if it got bad and I couldn't eat much to let them know and they had some medication I could take.

1 down, 9 to go

Radiation day 1 - set up and marking + treatment of cervical spine C2-C7 and  thoracic spine T1-T5.  45 minutes of pure hell!  I forgot how claustrophobic it makes you feel to be bolted down to a table with a plastic mask and have your hands and feet hog tied together to pull your shoulders out of the radiation zone.  Worst is over though.  Going forward, it will just be the treatment.

Spine Radiation

I got sentenced to 10 more radiation treatments to knock back this spine metastasis.  They will be using the same hog tied and masked process they used last time.  Fun, fun... For a refresher on what the process is, click on the link to read more and it will take you to the blog article from November.

Read More

Doctor's Visit Update

Totally exhausted, but so much to do.  I had to take a quick break and update everyone on today's visit.  The disease is now extensive in the bones of my spine, but not enough to cause it to compress.  The bad part is that the disease is spreading into the soft tissue areas around my spinal cord that protect the spinal cord and there is a risk for a nerve to be affected if nothing is done.  My local oncologist is recommending radiation to that area.  I'm all for that and do not have any dates or amount of times I have to go in yet.  I will find that out at the initial consult with the radiation oncologist (using the same one as I did in the past).

As far as the treatment plan goes, I spoke with my oncologist and she said there was a trial that would fit me nicely and not burn another one of our possible standard care drugs.  It's in a second phase 3 which is way late in the game and working well for people who are unsuccessful on endocrine therapy (which is me).  She is going to see about getting me into this one as soon as the radiation is complete.

In the meantime, I'm rather exhausted and trying to get things cleaned up around here so that some people can come out and look at possibly fixing some of the things that never got finished.  My mom has found some volunteers to help out.  Between my appointments, work, Katie's schedule, and Jesse working all his days off to make up for days he takes off without pay (his new manager is making him take his PTO when he goes with me instead of letting him work in the waiting room)....  we have a thousand unfinished projects in this house still.  So I have to get this place straightened up so it can be toured by a bunch of strangers.  I'm worn out and still have 4 rooms to go!  So back to it.

MRI Results and Treatment Plan

Tomorrow morning, I have an appointment with my local oncologist to review my MRI Results and talk about a new treatment plan (since the current one isn't working).  MD Anderson is recommending I take care of anything necessary on the MRI Results, then get on a standard of care therapy for a while to get the cancer back under control.  That sounds reasonable, so I'll see what the local oncologist suggests.

Finally Got an MRI Scheduled

So I ended up having to contact my local oncologist, get MD Anderson to send over the CT Results and what the MDA oncologist thought was going on, then wait for the local oncologist to look it over, but I finally have an appointment for an MRI this afternoon.  I'm really hoping that the tumor on my spinal cord isn't pushing on anything... I guess I'll know soon.

Never Going Back Again

♬♬Been down one time, Been down two time, Never going back again ♬♬

I was planning to go down to the ER after work to get the MRI done that my oncologist told me to go to the ER to get, but I ended up having to go earlier because I was having chest pains and extremely short of breath for about an hour or two. So, I listened to everyone telling me to go and I had my mother take me to the ER - and I'm never going back, again!

When I got there,they got me back quickly, and did an EKG.  The EKG did not show anything, so they put me in a room and left us for several hours.  Eventually, a doctor came in and I explained the current issue with the chest pain and breathing difficulty (which by this time was no longer a problem because it had been several hours) and I also told him about what my oncologist had asked me to go to the ER for (the cervical spine tumor that is probably pushing on a nerve that has the potential to cause paralysis).  

In Limbo Again

The trip down to MD Anderson turned out to give all bad news.  The scans I did on Thursday show progression in the liver which disqualifies me for the trial.  It also means that the current hormonal therapies I'm using are not doing the job on their own.

While I was there, I mentioned the pain I have been having in my shoulder and upper back.  My oncologist thinks this pain is most likely caused by a tumor in cervical spine (C5 to be exact) pushing on a nerve.  If this is the case, it is something I have to have treated immediately as it could lead to paralysis.  He actually wanted me to go to the ER that day to get an MRI, but since I was in Houston and had a full weekend planned, I opted to wait until I got home. I'll probably go up there tomorrow after work or something (as long as none of the warning signs occur - which would mean I'd have to go immediately).

MDA Change and Cancerversity

I called over to the breast center at MD Anderson and told them about the possible progression.  A little while later I got a call back saying they were moving my scans up to June 5th, with doctors visit on June 6th (they were originally scheduled for June 24th).   I hope me and the local oncologist are wrong and the scans show something different, but my gut feeling and the symptoms make me doubt the scan will disagree.

June 4th is my cancerversity, or the date I was originally diagnosed with cancer.  It's amazing to believe I've been living with this disease for 5 years now.  And even more amazing, to think I may be living with it for the rest of my life.

If you are using a computer to access my blog, you should see the new count up widget I added, below the "about me" section, which shows the time that has progressed since my initial diagnosis in 2009.

Here's a link to my original post when I started this blog on June 5, 2009:

http://aymzbc.blogspot.com/2009_06_05_archive.html

Last few weeks

These last few weeks I've been in pain.  My shoulders and back have been hurting again.  I went in today for my checkup and treatment.  I had a feeling I was progressing, rather than responding, to the endocrine therapy I was on, so I mentioned this today.  The doctor compared it to what she had measured last time, and said it does appear to have grown.  She recommended I call MD Anderson and let them know.  I guess I have no choice.  I really do not want them to find progression, because it disqualifies me for the trial.  It's also one less treatment option for me. 

They are making me go into work tomorrow at 5am, so I guess I'll make the call after work and see what they want me to do.  It's going to be a REALLY long day tomorrow.

Opinion: 30 percent for 30 percent

The article below was salvaged from the wayback time machine while I was reading through a blog that had been shut down.  The author either moved on or died, you never exactly know with mets patients.  Either way, the article is excellent and really goes into some detail on the lack of funding and research done for metastatic breast cancer. 

Opinion: 30 percent for 30 percent

By C.J. (Dian) M. Corneliussen-James

The most devastating and feared breast cancer is metastatic (stage IV) breast cancer. This occurs when breast cancer spreads to distant, non-adjacent parts of the body.  It strikes 30 percent of breast cancer patients and is fatal, taking lives on average within two to four years of diagnosis.

Results from Baseline Scans Done on 4/13

Well, the results from the new set of baseline ct scans I mentioned in a previous post have finally showed up on the my.MDAnderson.org website.  The scans were done to establish a new baseline set of scans to compare to another set I will do in June. The goal is to show that my disease is stable, rather than progressing, so I can qualify for the immunotherapy vaccine trial that I was previously disqualified from.

Joined Cancer Support Community

Recently, I found a cancer support non-profit group called Cancer Support Community online that had a lot of great resources.  They offer support groups, activities, and workshops with experts who come in and give hands on talks and give out free information and items.  They have family activities, care giver support groups, and some of them have children and teen groups.  The also offer some rather unique items I have not seen in other places like the Open to Options resource below.  I also posted a link the other day showing some free books you could order.

Annual Conference for Women Living With Metastatic Breast Cancer

Jesse and I are going to the Annual Conference for Women Living With Metastatic Breast Cancer in Philadelphia this weekend.  We qualified for a travel grant which provides us with reimbursement for airfare and hotel costs.  I'm looking forward to the workshops, speakers, vendors, and most importantly, the new friendships.  Here is some information on the conference and the types of topics covered: 

http://www.lbbc.org/Events/Metastatic-Breast-Cancer-Conference/2014-04-26-Metastatic-Breast-Cancer-Conference

Second Chances

I was down in Houston at MD Anderson Friday and I got some good news.  I was told that I would have a second chance to meet the qualifications of the vaccine trial I was interested in previously.  My oncologist at MD Anderson managed to argue that the original baseline scans were not done at MD Anderson, therefore; they did not count.  So a new set of scans will need to be taken as a base line and then 3 months later a second set of scans will be taken to see if the disease has progressed.

They currently have me on the Lupron, the Femera, and XGeva (I believe they are going to approve it, but will find out for sure tomorrow).  This is an attempt to starve my estrogen fed tumors.  I like being off the chemo and am hoping this works for a while.  I did get about 4 years out of Tamoxifen, so maybe I'll get a few out of this one.  When they do the trial, they will just add the vaccine on top of these drugs.

Local Oncologist Interview

I went in today and met the local oncologist at the Center for Cancer and Blood Disorders.  She recommended many of the things I was never able to convince my old oncologist to do.  She wants me to get a oopherectomy (ovaries removed) instead of staying on Lupron (because the coverage tends to be spotty or wear off near the end of the month), she wanted to see if my insurance would approve xgeva (it didn't, but I had asked and my old oncologist refused to even try it), and she is also pro-trials.  There may be an upcoming trial where they test for and treat Androgen levels.  But for now, we are going to continue the Lupron, Femera, and Zometa (since xgeva was denied).

MD Anderson and MedImmune Join Forces to Advance Cancer Immunotherapy

Read More

The original creater of the BC awareness ribbon has died

If you have watched the film Pink Ribbons Inc you will be aware of the story of Charlotte Haley who designed the first breast cancer awareness ribbon, which was a salmon or peach pink shade. When she was contacted by Evelyn Lauder of Estee Lauder who wanted to use it she realised that it had more to do with their profit margin than raising breast cancer awareness so she said NO. They then changed the shade of pink and used it anyway.

Read More on Teddybearwannabe's blog site

Off Chemo for a Bit

Here's a quick glance at what's coming up and what's going on with my treatment:

• 3/24 - Interviewing a new local oncologist at the Center for Cancer and Blood Disorders in Fort Worth.  See if she will give me the 2nd Lupron shot and my Zometa infusion while I'm there.
• 3/27 - Drive down to Houston after work
• 3/28 - Oncologist appointment at MD Anderson and talking to the group over the trials regarding future consideration on upcoming trials

Support Stage IV

How to find valid medical information online

Guide to Healthy Web Surfing: MedlinePlus:



'via Blog this'

19 Ways Chemotherapy Affects the Body - StumbleUpon

19 Ways Chemotherapy Affects the Body - StumbleUpon:



'via Blog this'

Waiting on MD Anderson and Local Cancer Group

Sitting here waiting on the nurse at MD Anderson to call me and tell me what the doctor said the game plan would be. Everything up in the air currently and waiting to hear what he proposes. 

In the meantime, I stumbled across an awesome resource for any of you looking for a local group in DFW area. This group appears to be about patient empowerment and has 3 clubhouses across the DFW area. One even in tarrant county (out near Keller!) Here's the link to their calendar.. you have to attend a new member meeting first, I'm signed for 3/20 at Tarrant County Clubhouse if anyone else is interested in going with me. Family and friends are welcome, also.. they even have a local support group for them!

http://cancersupporttexas.org/calendar/

Free Educational Resource for Cancer Related Topics

Found this great resource for FREE books covering a variety of cancer topics.  Ordered the one Metastatic Breast Cancer for myself.  There are other cancer types available, as well as specific topics.  Also the option to donate towards this effort to help pay for the free resources for others.  Thought I'd share it in case anyone else would like to order one.  Shipping is free also!

https://orders.cancersupportcommunity.org/

There's also one for family and friends!

http://www.cancersupportcommunity.org/MainMenu/Family-Friends

Vaccine Trial Update

I just got told that due to progression of disease, I do not currently qualify for the clinical vaccine trial.

Progress on Local Oncologist, Maybe?

I managed to get off work on time today, well.... Actually, I worked through lunch and left 30 minutes late, but still had a good 30-45 minutes before the doctor's offices all closed, so I made a phone call to one of the MD Anderson referrals at the Center for Cancer and Blood Disorder on Magnolia in Fort Worth medical district.  After a small runaround and a miss-transfer, I managed to talk to someone, and they acted like the oncologists there were more than willing to work with MD Anderson, and that they were a progressive facility.  They are reviewing my requests and my records and should be getting back to me by around midweek.  My big issue is that I know absolutely NOTHING about this facility.  In fact, I have lived her for 42 years and never even heard of them.  Does anyone out there know anything about them? Do you know anyone who ever received care there?

I also had a good friend who has fought her own battles medically, message me, and tell me that she had asked at UT Southwestern, and they sounded like they would work with me, also.  This is pretty far from home, and another drive I'd have to make between appointments in Houston.  Since I'll already be racking up the miles back and forth to Houston, I'd like my local to be as close to home as possible.  I'm holding this one as a my "ace in the hole"  in case I can't find decent care in Fort Worth metro area.

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 ...

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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/

Delaying Chemo For Breast Cancer More Than 60 Days Increases the Odds of Premature Death

Good article for those newly diagnosed.  I did Neoadjuvant chemotherapy (chemo before surgery rather than after).  Of course mine was delayed 10 months longer than necessary due to initial diagnosis being delayed 10 months due to dense breast tissue and the radiologist's inability to read the films correctly.  I wonder if they did the same study on neoadjuvant therapy?

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Researchers Develop New Compound Known to Reverse Spread of Malignant Breast Cancer Cells

Researchers Develop New Compound Known to Reverse Spread of Malignant Breast Cancer Cells: "Bcl3"

WBC Good

I went in for lab today expecting to be lower than last time.  I had completed a full week of chemo, which I thought would pull everything down further.  Amazingly, it had come back up.  I'm almost in normal range on WBC now, and in normal range for the NEU(ANC)!  Here's this weeks CBC report:

Page Update

You may have noticed I updated my page. The background I've added is a view of the type of breast cancer I have, Invasive Ductal Carcinoma, as seen through a microscope.   I removed the pink ribbon template and added a Metastatic Breast Cancer ribbon created by METAvivor.

I decided to make this change after much thought and research.  It seems that most of the money that is raised by the pink ribbon items is going towards curing those with low grade breast cancer.  I am glad those with low grade cancer are getting a chance for a cure, but I think that it is time that some of the money goes towards additional treatments and possible cures for metastatic breast cancer, also.

If you'd like to read more about this and understand better why I have removed the pink ribbons and changed the template for my page, click here.

Advanced cancer info

http://www.advancedbreastcancercommunity.org

More on Acceptance

Acceptance

Finding Your Inner Strength

I often use the analogy that having cancer is like being in a convenient store robbery.  You've got a gun to your head and you have to do what you have to do to stay alive and make it through the situation. You don't really have a choice, you just do what you have to do to survive. 

First Support Group

I was reading through the posts on the Metastatic Breast Cancer Networks Facebook page last night and saw a post regarding a phone support group for people who are living with metastatic breast cancer and decided to give it a try and see if it helped me.  I called in tonight and met 4 other women who made me feel much less alone.  In previous posts, I've commented on the loneliness of living with a chronic disease.  Don't get me wrong, I have a wonderful support group of family and friends, but sometimes you need to talk to someone who knows exactly what you are going through.  These women did.  This is the first time since my diagnosis that I've actually talked to anyone who has this disease and it was awesome!

There were a variety of women on there of all ages.  We were all going through different treatments and had different amounts of time between our initial diagnosis and our metastatic diagnosis, but we all had so many things in common.  The emotions, the confusion, the journey of getting from diagnosis to acceptance.  We all share this.  It was very therapeutic to hear other people talk about having similar concerns and experiences, and I'm definitely looking forward to the next call in two weeks.

10+ Years Stories

When someone says they have been living with mets for 10 years… all heads turn. We all pay attention. We all want to hear their story.

And, time seems to stand still when someone tells us they have been living with mets for 10+ years!

Living with metastatic breast cancer is a challenge, and these stories give us hope. If you have hit that 10 year mark, please share your story with all of us.

Read More>>

Long Hot Bath and Some Quotes

I just got out of a long hot bath in the Jacuzzi tub we installed and tiled ourselves just prior to my initial diagnosis.  I'm so glad now that we put that effort out. It's an oasis for me.  I go in there for hours to soak and read.  I've been reading a book a friend from school, Lori, sent me called "Stranger in the Village of the Sick" - by Paul Stoller.  

Good News - Chemo is working!

I got my CA 27-29 tumor marker results back.  This is the test that initially detected the metastasis back in October 2013.  

Added Event Calendar

Added event calendar to my blog for those who want to know what's coming up. It's on the pink bar below the blog title.

Today's Doctor Visit

I went in for blood tests, an oncologist visit, and a Zometa infusion today.  They performed the following blood tests:  CBC, CMP, and CA 27-29 test.  I have results back on the CBC and CMP.  CA 27-29 is the tumor marker test, and I should be able to get a copy of the results when I go back next week.

Twitter responses reactions to patients tweeting about cancer

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Lab Report

Good news on the CBC lab yesterday.  Neu # (ANC) up 1 point.  Currently at 3.4 (normal is 1.5-6.5).

Lab tomorrow

Cold symptoms mostly gone today.I'm curious to see what my cbc lab results show tomorrow. The stat they track for neutropenia(low immune system or white blood cells) is the NEU # (ANC).  Normal is between 1.5 and 6.5.  My last cbc showed I was on the low end of normal at 2.4.  If it drops too low they give you a shot of Neupogen which causes your bones to produce more white blood cells, which boosts your immune system so you can safely continue your chemo treatments. 

Science Names Cancer Immunotherapy its 2013 Breakthrough of the Year

MD Anderson News Release 12/19/13

New reality for long-time dream of medical researchers is grounded in work by Jim Allison

Detect. Destroy. Remember. The mantra of the immune system’s relentless campaign against infectious invaders and the body’s own abnormal cells finally is applying to cancer in meaningful ways.

The journal Science today named cancer immunotherapy its 2013 Breakthrough of the Year, the latest recognition of the rising tide of treatments pioneered by Texan-born Jim Allison, Ph.D., chair of Immunology at The University of Texas MD Anderson Cancer Center and executive director of its Moon Shots Programimmunotherapy platform.

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