My letter to the people who can save my life….

Alright, I have my letter to Genetech all ready to start pleading my case next week if needed! I feel better now that I have at least done something!

Dear Genentech,

My name is Tracy Murray. I have AdenoCarcinoma – Cervical with Mets to the lungs.

Unfortunately my cancer has been resistant to standard chemotherapy. My oncologist suggested we have my cancer tissue analyzed by Foundation One in hopes of finding alternate treatments. So off I went to have tissues taken out of my largest lung tumor. I have three tumors, and after the samples were taken this largest tumor was then ablated. One of the findings from Foundation One was the ERBB2 – Amplification. This led me to Clinical Trial – NCT0209141 sponsored by you.
I was accepted into the trial at the Oncology Hematolgy Care, Inc. Group in Cincinnati, Ohio. On April 23, 2015 I had my first round of Pertuzumab & Trastuzumab. I had a second round three weeks later and then I had a CT Scan.
This CT Scan has changed everything. The Radiologist reported, incorrectly, that my large tumor, the one that was ablated, had grown. I was then removed from the clinical trial. This turned everything into chaos of course, especially since a second technician noted that the other two tumors seemed to be positively affected by the treatments.

As soon as possible my primary oncologist, after consulting with a Doctor at Karmanos Cancer Institute in Detroit scheduled a PET Scan for me. The PET scan results were rather shocking. After two treatments on your drugs the PET scan was unable to locate ANY cancer. It was gone. It also confirmed that the ablated tumor was still as it should be, an ablated tumor.

My oncologists office contacted the Clinical Trial group in Cincinnati and requested that I be put back on the clinical trial since my getting dropped was prompted by an error from a radiologist. I received notification today that I cannot go back on these medicines that are without a doubt saving my life. I don’t know why yet. As seems to always happen when dealing with multiple busy oncology practices they’re having trouble communicating so now I will wait until next week to find out what this explanation is.

So this is my preemptive strike. Assuming that I will not be able to get back on the trial, what can I do to get these medicines from you so I can go on with living my life. I have worked so hard to be strong and healthy and I cannot let the mistake of one technician take that all away from me.

I am sure my primary doctor, Dr Tim Kasunik, or perhaps even Dr. Amy Wiese from Karmanos will be contacting someone somewhere to see if we can get these medicines and if we can find a way to have my insurance company cover the cost.

All I am asking in this letter is your acknowledgment that you have read it, and that someone remembers my name so when you are contacted I am not just someone on a piece of paper. I am the person you started that trial for, I am a success story that you would not otherwise know about.

Most Sincerely,
Tracy Murray

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Movin’ on UP!

I am so excited about moving. Not just a little bit, a HUGE BIT! Really really excited.

I am very excited about two places that coincidentally turned out to be fairly close to each other:

http://www.zillow.com/homes/for_sale/Toledo-OH/pmf,pf_pt/condo,mobile,townhouse_type/34715836_zpid/34303_rid/2-_beds/50000-150000_price/188-563_mp/1200-2000_size/days_sort/41.781553,-83.282204,41.53274,-83.867226_rect/10_zm/

PleaseComeInforTea

and

http://www.zillow.com/homes/for_sale/Toledo-OH/pmf,pf_pt/condo,mobile,townhouse_type/34716437_zpid/34303_rid/2-_beds/50000-150000_price/188-563_mp/1200-2000_size/days_sort/41.781553,-83.282204,41.53274,-83.867226_rect/10_zm/

I haven’t been inside either so they could turn out to be horrible. But I really really love the tile on that first one! And built in shelves for Coreys 600 DVD’s. I go to sleep thinking about it. I wake in the middle of the night thinking about it, I think about it while I am mowing – okay that’s precognitive. I have to mow today and I am sure I will be thinking about it.

I checked crime reports in both neighborhoods and no crimes reported within miles for the last thirty days.

I think I have decided that I can get a place with carpeting if I promise myself to have it pulled and some kind of cleanable (beagle) flooring put down before I move in. It would be really hard because once I sign those papers I will want to move NOW.

I went for a walk in the neighborhood last night and I thought how nice it would be to walk on a flat street, ours peak in the middle and angle down to the curbless sides. I thought how nice it would be to not be walking by all the people with their pants an inch below their ass. I wonder if I could get a special dispensation for Sean and myself and move into an over 55 neighborhood!

I will miss sitting on my tiny front porch watching all the cars go by.

I meet with my realtor on Thursday and he better be ready to run with it!

 

 

 

 

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And on we go…

For those of you who are not on my Facebook or within hearing distance of the places I have shouted, on Friday after my PET scan the doctors called me because the PET scan people were so excited they called the doctors to tell them that they were unable to find any cancer on my PET scan. It is just gone! That’s pretty impressive.

 

Nope - No cancer here
Nope – No cancer here

My doctors office is now trying to get me back on the clinical trial. I only had two doses of the meds and it would be much better to get some more in me, just to be sure. I think it’s also important that the study know that is worked. It needs to be in their data so hopefully this will be a standard treatment for people.

I have been looking for a new place for us to live. A an apartment, a townhouse, a mobile home. Just not here. Last week I visited a few places and was pretty disappointed. Then the other day my husband said to me maybe we should consider buying and once I started looking at Condo’s  really liked the idea. They all seem to almost perfect for us. Today I went and visited two. Neither of them suite us right now but they were so much closer than any apartment I have found. I will be meeting with my realtor this week to get the ball rolling. Pretty excited! It just seems to right.

For the last year and a half I have slept great. I went from my restless sleeping to sleeping really heavy. It was great. I also started running last year. Not much, but I was running. Zooooommmmm.

Then the chemo pretty quickly took away my running. Just couldn’t do it. I was still sleeping great though, except on the mega steroid days. Then a few weeks ago I lost my sleep! I am back to restless again. Waking up all the time. You know what? I think it coincides with when my body suddenly didn’t have that foul cancer growing in it. I think the fatigue of cancer went away and so I wasn’t so exhausted that I slept like a log! Running is really really hard now though. I don’t know why. My lungs and throat just burn when I run more than about four minutes. I am picturing the places where the cancer was as wounds now, so hopefully as they heal I will get that back.

That is all!

 

 

 

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Karmanos Cancer Center & The rest of the Week

I have so much to do this week! I have some phone calls to make to follow up on yesterdays appointment.  Today is my first visit to a potential new home. It’s townhouse community and it is exactly what I wanted in square footage, and in my budget so we’ll see. Then hopefully lunch with a couple of ladies. Then I really MUST clean my bathroom and kitchen.

Tomorrow I have a dumpster being delivered early morning, then I will go pick up my niece and another hired laborer will show up 10-11 ish. They will work on emptying my attic into said dumpster while I watch and hopefully grab and sell anything that’s worth more than $10.00. I will be doing NO physical labor because I have a PET scan scheduled for early Friday morning. Which means no strenuous activity  – my poor ego when it sees my fitbit – and no Sugar,no artificial sweetener, no Dairy, no Carbs or Caffeine! What will a vegetarian who doesn’t eat raw veggies eat!! Eggs, and nuts and water. Woo.

My meeting at Karmanos was just what I needed to hear. My sister and I drove up there together, not a bad drive till you got to their place. Getting in is HORRIBLE. There is no parking, and there is a parking garage which is apparently always full, you have to use valet, which is fine, but there isn’t enough room because of construction so it is a mess!

But more importantly I loved the doctor. She was so smart, and such a teaching kind of doctor and she really put some thought into my info before she came into the room. She was not convinced that all of the information so far was accurate. She said that the PET scan on Friday morning will clarify things. It will tell us if the large tumor is actually still cancer or if it is just a gas filled piece of scar tissue. The measurements and location listed does not show consistency on the reports from previous CT Scans so she’s not even positive it’s grown. She thinks there is a small chance that it may just be all stupid readings my different radiologists. She has requested that I get copies of the last four CT Scans I’ve had so she can have her radiologist read them. YAY!!! This is exactly what I needed. Someone new to look at everything and draw their own conclusions. I just went and looked and she has five out of five stars on every single category on HealthGrades. I have never seen that before.

If the PET scan shows that the large tumor is cancer, then it’s into another clinical trial.

If the PET scan shows that the large tumor isn’t a tumor anymore then she suggested our best course of action is to get the drugs I was on in the clinical trial, which are FDA approved drugs, approved as covered by my insurance company to be used for me since we can prove they work. Hopefully they’re also cheaper than my other chemo options and they would be be all Heck Yes!

After the PET scan on Friday it’s back home to finish filling up the dumpster and eat all the food and drink all the coffee!

 

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