TWISTS AND TURNS OF TREATMENT...

oh you lucky, lucky Hope for Tanya supporters you...

two BLOGS in a week...WWWWHHAAATTT...

 

This morning I woke up feeling SO tired, weak and just overall exhausted.  I haven't had a day yet that I wasn't able to walk from the car to my appointment.  That day came today.  It took EVERYTHING I had to get out of bed, even more to get from the house to the car, and THAT MUCH more to get from the car to the appointment.  I had to use a wheelchair.  My legs are just so

weak, they feel like they will give out at any second. 

 

We found out today this is due to me being severely dehydrated.  Today I was to get labs and an exam by the clinical trial nurses.  When I pulled up in my beautiful maroon Cadillac Scottsdale Healthcare wheelchair they said "get her back and get her on fluids and draw blood now" I looked like a terrible slumped over Tata.  I crawled into bed FREEZING my buns off and they got hot blankets (oh I love those) blood and hooked me to fluid.  I soon was passed out. 

 

A short time later I heard some talking but just didn't bother to move or wake up...I knew mom was there and could handle anything.  I have been blessed with the most amazing mother in the world.  I can't imagine being my care taker.  I sleep all day every day, I hardly eat, I have been vomiting  too much, complaining of gas cramps, that I am hungry but I can't keep it down, sleepy but I can't sleep, hot but I am cold, so thirsty but it comes back up, energy but no energy.  She just helps in any and every way she can, she is nothing short of AMAZING.  She has been outside in the heat (100+ degrees) doing the yard work, cleaning house you name it.  I thank her every day for doing everything for me, but honestly "Thank you" is just so small in the grand scheme of it all.  I can't "thank" her enough and will find a way for the rest of my life to repay her.  THANK YOU MOM, you are the MOST AMAZING WOMAN I have ever met I hope to be half the mom you are one day.

 

When I woke up mom said "I know your awake over there, I hope I got all that right" Haha she knows me so well.  She did great, got it all right.  Filled me in on what they talked about and what IV's I was hooked up to.  Today they hooked me up to a 4 hour infusion of potassium and saline, dexamethasone which is a steroid.  My potassium was extremely low, all my electrolytes were totally out of whack, stomach acid was really high, and extremely dehydrated.  So I was in BAD shape.  After the 4 hour potassium infusion, the dexamethasone that was to help with nausea and to calm my stomach and will help make me hungry so I can eat, boy did it! I was naming off everything I could think of to eat! Haha she also gave me IV Zantac to help ease my stomach acid, which is what might be causing me to not keep anything down.  I have nothing in my stomach, yet I am puking non stop, my stomach acid it on the fritz.   After I woke up a few hours later, I had to pee, I was able to walk to the bathroom alone and not feel like my legs were going to give out under me.  I still needed to use the Cadillac to the car but I felt better.  I even had high hopes of going grocery shopping with mom.  Using the Cadillac of course!! We got home and had to get a few things taken care of when I just didn't have it in me.  Maybe tomorrow! :)

I am feeling so much better than when I woke up this morning thank you to the medical staff at Virginia G. Piper Cancer Center for nursing me back to health.  Your all awesome!!! :)

 

For those of you that have been a little confused about where I am going for this clinical trial and all that we got clarification today... Haha I see Virginia G. Piper Cancer Center in Scottsdale, they are partners with TGen.  TGen is the one that has MY ACTUAL tumor and are testing it and doing research on it.  In about 3 months OR when the testing is done.  Once the testing is done, we will have a meeting with the folks at TGen, they will tell us everything they found with the research on my tumor.  I can't wait for this appointment.  The testing and research they are doing is RARE, because it's so expensive.  We are talking $40,000 or more.  The testing is very close to the human genome, they will take my tumor and test it, find out why it has mutated, how it's mutating, and what drugs to use to kill the cancer. 

Currently my treatment is Friday and off for two weeks and then treatment again Friday.  I know a lot of you have been wanting to know when will we know the drug is working?  Well I will have a Scan on October 10th and that will tell us what the drug is doing.  My last dose will be on October 25th.  Sometime around then I will meet with the folks at TGen and they will give us more information. 

 

I know some of my SCCC/LCCC sisters have asked me about the trial and where to get more information.  If you or anyone you know is interested in a clinical trial, not just for SCCC/LCCC, but for any and all type of advanced staged aggressive cancer call::

 

Joyce Schaffer, MSN RN AOCNS

Patient Care Coordinator

Virginia G. Piper Cancer Center                 Clinical Trials

 Scottsdale Healthcare                       10510 N. 92nd St., STE 200

PROUDLY partners with TGen            Scottsdale, Arizona 85258

 

480.323.1339 phone

480.882.5820 fax

joschaffer@shc.org email

 

Thanks,

Tanya



Good Morning, Good Afternoon and Good Night

Good Morning, Good Afternoon, Good Evening and Good Night! :)

It's been while since I have been on here to update you all. 

I am sorry about that, but I hope you all can understand

WHY I haven't blogged in so long. 

Please understand that, for most it's a simple task as just typing up a message and posting it.

For me it take a lot more.  I get tired really easy, for one and for two most days I hadn't been feeling

very well so typing a blog was the LAST thing on my mind. 

Like I had mentioned in my previous post I have been very sick.  I couldn't keep anything down,

and I was very weak.  Well this has continued for a few more weeks. I was in and out of the clinical

trial getting fluids every other day it seemed. 

Well last Friday I was suppose to get a dose of chemo 

**I WANTED TO POST THIS FOR TANYA BECAUSE SHE NEVER GOT THE CHANCE TO FINISH IT...**

CLINICAL TRIAL...

HELLO :)

I am sorry it's been so long since I have updated.  I am so sorry you all have been kept at arms length not knowing what's going on, or how I am doing or anything for that matter.

 

The past good month has been a trying one for me.  I got really sick, vomiting and not able to keep anything down for a good three weeks.  No matter what, I drank, ate, didn't drink, didn't eat, no matter what  it came up.  Three straight weeks of this.  Nobody could tell me why. It was exhausting.

 

PAIN...oh the pain. I had the worst pelvic pain.  (due to the tumors) I was on pain pills for the pain, which helped the pain, but constipated me, and on top of that I couldn't function.  Every time I would take them they would knock me out.  So I was sleeping mostly all the time.  Sitting down became impossible.  It was so painful to sit on my bottom, no matter what surface.

 

 

CLINICAL TRIAL!!!!

I went in to see T-Gen for a clinical trial consultation.  The day of the appointment they told me they didn't have any studies open for me, but would keep an eye out and would let me know if anything came up.  The day later I got a call saying a trial opened up and I would be a match.  They needed me to come in ASAP for further consultation.  I went in with Scott, Mom and Grandma.  When they told me about a trial that I am eligible for.  Filled me in and all the details and I signed all the paperwork. They told me the first week of the trial was going to be hard.  They do MRI's, blood work, and biopsies.  It's a full week of this each day more MRI's, blood work and a biopsy.  I had a liver biopsy and adrenal biopsy.  The results to these tests are for trial purposes only.  They aren't looking for growth or spread disease or whatever.  These results are just for what the trial is looking for only. 

The trial drug is injected once every two weeks.  The first week I will be really worn down and tired, the week after I should have more energy.  The trial drug has been used in phase 3 studies and they have had much success!  So I am on a phase 3 drug in a phase 1 study.  They have high hopes this will work and so do I!

 

A few weeks ago I got a call from the trial and they told me T-Gen has opened up a study for Small Cell Ovarian Cancer.  They looked at my history and they are very interested in my tumor.  So when they did the biopsies they took extra tissue samples for them.  The best news is that if this trial drug doesn't work, we will have this as a back up plan.  They will do all sorts of tests and research on MY tumor tissue, to know how it grows, why it grows....EVERYTHING!  The testing will take about three months and so will trial drug I am on. 

 

I'm still getting sick at least once a day, I have a nausea patch but doesn't seem to work 100%.  I have a hard time getting food down, but I still try.  Some days are easier than others.

 

 

That's about it for now,

Thanks for reading!!!

 

 

Tanya