Monday, June 29, 2009

Last Options: Clinical Trials

As you guys know I recently had my last set of scans and it showed regression in the brain and spinal cord area. Basically mean that I have gotten worse in the brain and this latest chemo option that I was on: Tykerb/Xeloda did not work to cross the Blood/Brain barrier and reduce the number of tumors and other brain metastasis that I have going on in there. So its been about 3 weeks since I have been on no treatment at all. At this point there is no chemo treatments that are working to cover the barrier so now its back to the fundamentals: God's treatment! I mean it's been his work all this time, but this is truly when we will see what he has in store.

I am also utilizing one more option to try: clinical trials. I start phase 2 of a clinical trial on July 2nd here at the Cleveland Clinic. It is a new drug I believe that they are hoping crosses this blood/brain barrier and can provide proof of PROGRESSION for the participants...and I sure hope I can be one of those participants that sees some improvement! The drug is called patupilone and it is administered as a single intravenous infusion over 20 minutes every 3 weeks. So for those that have or are getting IV chemo you know the deal...get in you infusion room with the TV and magazines and wifi access (praise GOD for the Internet access!!) and you sit and wait for pharmacy to bring up your meds...they call the secondary nurse for a chemo check, they make you say your name and birthday for the 50th time and hook up that drug in my case to your handy dandy power port in your chest and off you go. I think this drug might be a tad more toxic than the last IV chemo drugs I had but we will see. I guess once again gotta take the side effects with what real effects that you want to achieve! And at this point, this is my only option here! So lets see what we can get out of it! And again keep in mind the big picture that no matter how this ends up it was all God's plan bottom line.

Even more important...please pray for me as they are making me take tests again...that means me verses the MRI machine...again...for HOURS!!! Roarrrrrrrrrrrr

And I have written about this clinical trial now for like 3 postings and keep on forgetting that I wrote about it....Brain please MAN UP and stop having me repeat myself!!! I promise to change the subject next time!!!

Friday, June 19, 2009

Skin update--No Bubonic Plague!

Staphylococcus Aureus Impetigo. That is the skin bacteria that I have so no worries I wont infect you! So right now I hold the record of staying the least time in the hospital...I only had an overnight visit...yeah! So its good to know that it is NOT shingles and it is nothing really serious and after this 30 day dose of antibiotics and skin wash I should be as good as before. One of the biggest effects was the fatigue and lack of energy and it seems that it has gotten better day by day so that is a plus. Getting rid of these sores will be good too...time for clear skin again!

So lets do a synopsis:
-Bacterial infection of the skin...will be cleared up pretty soon!

-Latest scans/ tests...not good: lesions/tumors in central nervous system/spinal cord/cerebellum all show increase and getting worse. The tykerb/xeloda treatment was the latest option that we thought would cross the blood brain barrier to stop the growth in the brain but it has not worked so that treatment is done.

Right now I am not on any treatment but on the lookout for clinical trials and other options that may be floating around. Will keep you posted on a possible clinical trial that is out there that I might take.. I think I talked about it in a previous post.

Wednesday, June 17, 2009

One thing after another...after another...

You remember a few blog postings ago I discuss these these skin lesions that have come up on me lately and I am just not sure what they are or where they came from. So after talking to the doctor they elected to keep me in the "cooties" room at the hospital so there I sat from my hospital bed typing out this posting. So they kept me overnight in the hospital to try and figure out what is going on. So they continued to keep me at the Cleveland Clinic "cooties" room in the ER just waiting on results from some biopsies and cultures that they pulled so they can say whether its bacteria or something else. I think they have ruled out things like shingles and chicken pox and herpes syntrex because of how the lesions are sporadic and one of them oozed alot of stuff so one doctor was thinking staph bacteria? Not sure what it is I just hope they figure it out and fix it! They have already started giving me some antibiotics so they are also playing roulette trying to figure out what this is.

As I always say if it isn't one thing its another...I couldn't just get the news that chemo isn't working..I had to get like a full body fungal infection to just kick it into gear! Maybe one of these days I will just have ONE thing happen to me at a time.

When you back hits the wall...again!

Hey Everyone! So lets get straight to the dirt: the new chemo treatment plan: Tykerb and Xeloda is NOT working. The spot in my thoratic spine T9 has increased from 4mm to 7mm and other than one spot in the brain that has actually went down slightly, the rest have shown some progression. So right now we are just looking at it as one: cancer in the central nervous system because its in the spinal cord fluid and in that lining of the brain all around in the back there (ha great usage of grammar right there in that sentence) I have to read the new report and get it straight in my head so I can explain it better but this is how I understand it so far. As of yesterday I have been informed to stop the Tykerb and Xeloda so I am officially on NOTHING. So I have to see if they will put me back on good ole Herceptin or not. Now, lets celebrate the things we liver, chest, lung the lower back (with all its collapsed discs and stuff) are all stable so no new changes there which is GREAT! Its just of course one of the more important organs that need to stop acting up: the BRAIN!

The stop of chemo is of course because its not working and also because I am now looking at this clinical trial that is in phase 2 of the trial period. Its for candidates where they have brain mets and radiation and other chemo was attempted but no good response. So I guess that is my next option! You have to have been off treatment for a few weeks so I guess this will give me a break from the big pills that I have come to get use to swallowing every morning! The trial is by IV infusion I think once every 3 weeks and the biggest SE is diarrhea so Imodium apparently will be my best friend! I have to read through the material and see if this will actually be a good fit but you know when you are down to limited options you have to see whats out there.

Friday, June 5, 2009

Test Scans and Shingles!

I had my 3rd session know the scans you have to take each time to ensure that your counts are high enough to continue the chemo. This last scan my platelets and potassium levels were low so I was "assigned" to take some of those wonderful potassium pills to try and build up my levels and then retest this week. I was still allowed to continue chemo so at least I didnt have to posptone any treatment. Normally I don't just not take my meds but just the thought of those pottasium pills was just to much so I just endulged in bananas and gataroade and that seemed to do the job. Got back my retest and my levels are back up to a level where they feel if they are good with it then I am too!

But something new I have noticed are these open sores that I have mostly on the right side of my body. I explained them to the doctor and she says that it may be shingles so I have to monitor them and make sure that they don't get any worse. Well so far they don't seem to be expanding but they sure can sores will do that I guess! But really, is it just me or am I the only one that thought that Shingles was like an ancient disease that didn't even exist anymore!! Like scurvy or something. LOL Well I was wrong!

Next set of Scans to see progress: JUNE 16!!
Lets pray for some GOOD NEWS!

Thursday, June 4, 2009

The Birthday Celebration--Not so Great Parts

So I am not a journalist but I wanted to present an accurate portrayal of the birthday weekend so i had to throw in some of the parts that weren't that fun during the trip.

On Monday evening we got word that my Aunt's potassium was somewhat low and that we needed to get to the ER just to bring them back up to normal levels with a bag or two of that stuff in the IV. Now that doesn't sound like a big deal up front, but when they assign you a room you know its a wrap. So here we go with another hospital admittance right around when I am leaving. But God is good so we survived that and all is well in the world with auntie and those dumb fluid levels. What sucks is that she was in the hospital the whole time I was having fun in FL.

The other big thing was side effects. I am currently on my third cycle of this chemo and I had yet to really experience some of the effects...until the actual day of my birthday! Beginning around 5am that morning it was time for me to endure just some of the effects that I read about. And let me tell you, its not fun having "bubble guts" on a boat in the early morning! Or on a boat at all especially when you are preparing to go and jet ski!!! and then parasail!! But again I know I hate when people say this but it could have been worse.

Birthday Celebration- The great parts!

Hey Everyone! So its been a while since I posted and wanted to give you an update!! May 23rd marked my 30th birthday and also my first year post cancer diagnosis. And what a year it has been. Around this time last year I was already in the hospital and I believe I had already had a lumpectomy and they figured out that I was already in Stage IV cancer: metastatic breast cancer that had spread to the liver and bone.

Well this year I really turned it up a notch and decided to get as much friends/family that I could get to come out and enjoy the weekend with me. And boy did it work out! This memorial day weekend all in all about 14 of us headed out to Key West and just took it all in for the weekend. Thursday we drove down from Ft. Lauderdale to Key West and it wasn't a bad drive. Thanks to the steadfast drivers Alfino and Mike for getting us down there and getting us around while we were there. And shout outs to our personal navigation systems of Khalilah and Aesha and whoever was directing in the other car because they sure got us to each of our locations...or to parking when we needed it!

Friday we lived it up like some tourists and walked around the area checking out the city...and the sale at Nine West!! Saturday was the great beach excursion where we enjoyed snorkeling, jet skiing, kayaking, parasaling and overall just chilling on the boat and enjoying the heat and enjoying the company. I must say we were looking fabulous and we had tons of fun! Sunday we hit up Denny's like old college times ( and the long kitchen wait) and then head back to Ft. Lauderdale where that evening we head out to Blue Martini and enjoyed some appetizers, music, cake and friends we hadn't seen in forever...that I hadn't seen in forever! Speaking of cakes...did I mention that over the weekend I had THREE cakes! Thanks to my girls Harmony and Myrna...those cakes were the BOMB!

I must say this weekend was just another example of how God has been so good in my life that he gave me another year and brought out so much people to help me celebrate. Just to show that there are many out there that care. Sometimes that's all you need to know... that there are people that care!

I wonder whats in store for the next year of life!!