Friday, June 23, 2017

Finally Passed

Yep, I did it. It took another 2 blood tests to do it, as well as some dietary and medication changes. 

After the 4th failed blood test (my platelets actually went down from 95,000 to 89,000) I went on line and researched low platelets. It turns out that some foods can help, like salmon, tuna and some veggies I can't remember. In addition some foods and medications can hurt. That was the key.

I get headaches every day (which I assumed was a holdover from chemo) and I took Ibuprofen to help. Unfortunately this drug contains Naproxen which suppresses the production of platelets. I also learned that one of the symptoms of low platelets is headaches. What? Yes, I get headaches, take Ibuprofen then get more headaches. Sounds like a vicious circle. 

So I stopped taking Ibuprofen, ate some salmon along with spinach and my last blood test showed a platelet count of 112,000. Twelve thousand more than I needed to meet the Clinical Trial's criteria. The kicker to this is that the trial had officially closed and had I flunked this last time I would have not made the trial.

Luckily I did. On Thursday morning of this week I had a CT scan at Mayo in Scottsdale. Later in the day I met with the clinical coordinator and Hematology nurse at Mayo Phoenix to complete my paperwork and get randomized as to what group I would be in. It is still a little unclear to me which one I will be in, but I believe it will be the group that takes the maximum dosage from the start along with the steroid cream for the main side effect, hand foot syndrome.

I go back this coming Tuesday to Mayo Phoenix to get the medication and review the trial directions. At that time I will know for sure what group I am in.

I feel very fortunate and blessed to have made the Clinical Trial. My latest scan showed growth of two tumors in my lungs along with added fluid between the lungs and lining that surrounds the three sacks of the lungs. If this increases there is a procedure to drain some of the fluid that will need to be done.

So... Next week will be the first week of the rest of my life so to speak.

Keep your fingers crossed for me , will ya?


Friday, June 16, 2017

Well Hell, I Flunked Again

You can tell from the post title that my platelet count is still not high enough.

That's the bad news. The good news is that it went from 82,000 to 95,000. It needs to be 100,000 to pass the test and meet the criteria for the trial. My Clinical Trial Coordinator and my Oncologist at Mayo think it will be good by next Monday.

Because I can't go Tuesday the 20th for a scan (Vicki has an MRI that day) I will go back to the Phoenix Mayo clinic on Monday the 19th for Lab Work and then out to Scottsdale in the afternoon for a scan. It will be another all day affair. Appointments at the Phoenix facility all morning and a late scan (3:45 PM) at Scottsdale. I won't actually get the scan till close to 5 because they give you a bottle of icky stuff to drink for an hour prior to the scan. 

My Coordinator told me that if all goes well I will be able to join the Trial on Thursday of next week. Now I just have to get the nausea medication out of medicare and it'll all be good. I received a call from them today and they denied the drug under my part "D" but approved it under my part "B". I am going by the Walgreens here in Sun Lakes tomorrow to talk to the pharmacist again and see it has gotten down to them yet. 

Vicki's MRI on Tuesday is about her shoulder. She may need surgery for a rotator cuff injury. We hope we can find out and get her shoulder fixed.

It's been so hot that I've held off on working on the RV. We'll see if we can get some work done on it in the next week or two. Now that the RV specialist I hired has finished his part, it's up to us to finish the carpentry and painting that remains. I also have a little plumbing to do in the bathroom as well. We bought a new bathroom sink which I got installed when we moved the shower faucet, but the new RV toilet is still sitting in my living room. I guess that's better than appliances on the front porch like back in Alabama, but I still feel like it's the redneck in me coming back.

That's all the news that's fit to print with one exception. Our middle daughter and her family are moving back to Oklahoma on the 22nd. Vicki is miserable about this, but the kids have a son who is going to be a freshman at OU this fall and they want to be there with him. My son in law and he are both big OU fans.They will live in Norman to be close to our grandson, plus they really like the small town life better than here in Phoenix. 

I want them to be happy and will miss Jamie (my middle daughter) like hell but I think it's the best for them. We will make Norman, OK one of our first stops when we get the RV finished.

Try to stay cool this coming week and be careful out there,


Friday, June 9, 2017

I Flunked My Tests

I went in to the Mayo Clinic in Phoenix on Thursday of this week for tests needed prior to my joining the Clinical Trial for Stivarga. The day was to be filled with interviews with the Trial Coordinators, signing consent forms and a series of basic lab tests along with an EKG and a Cat Scan.

They give you the lab tests in the morning in order to determine if the condition of your blood meets the trial's criteria. Mine did not. My platelet count was too low. I flunked. Luckily I get to retake this test. We canceled the scan till my platelets get better. They made an appointment for me to go in to the San Tan Mayo facility on Wednesday of next week for just blood work. If I pass this time I will then go to the Scottsdale Mayo clinic the next day for a scan. 

The coordinators seem anxious to get me in the trial. Everybody I've dealt with at Mayo has been great. The place seems like a first class operation and the people as well. From my nurse to the lab tech and the EKG tech to the doctors and admin folks, they have all been great. I am hopeful the drug and the results will be as good.

There is good news this week as well. Vicki is feeling better. We went out to our oldest daughter's salon today and got our hair cut. So if nothing else, we look sharp.

I am still having problems with my Part D medicare getting the anti-nausea drug I need while in the trial. This particular drug is the only thing I've used that worked during the last 3 years of my treatment. When we had private insurance it was no problem, now it is seemingly unattainable through medicare. I am very disappointed with medicare so far.

Perhaps I'll bring our RV to the house this weekend and get some work done on it. That would cheer me up tremendously. 

Have a great weekend,


Sunday, June 4, 2017

Stuck on Stivarga

We had a very informative appointment with the folks at Mayo Clinic last Wednesday. I was first met by a doctor who went over my medical history with me. Then a Colon Cancer Specialist came in and talked to me about my cancer and what options I had for treatment. It seems that Stivarga (pills) is the last drug available to me for my stage 4 metastasized colon cancer. 

The good news is that they are running a clinical trial on the drug at Mayo. I will go to Mayo in the next few days for a series of tests. If I qualify after having a CT scan, EKG, and blood work done then they will randomize me to determine which of the 4 subdivisions I will be put in. Each of them receive the drug but with different doses and a different side effect dosage for the main side effect, which is a severe rash on the palms of your hands and the soles of your feet.

After that his nurse came in to give me contact info and tell me about the trial. Next the trial coordinator came in and explained how the trial worked and the different groups and subgroups. She also gave me a packet with all the info to take home and study. I told her then that I would be joining the trial if I qualified. A day later another person from Mayo called me to confirm my decision and set up an appointment for the tests I will need to have before joining the trial.

I am hopeful I get the group that starts with a low dose and the steroid cream for the rash. The other part of this group gets the same dose of Stivarga but no cream till the rash starts. In the second division you start with the maximum dosage of Stivarga and either get the cream to start with or have to wait till the rash appears. I would prefer to not be in this group. The online reviews from patients have been very bad for taking the maximum dosage.

The other good news is that the drug will be payed for by Bayer, the manufacturer. It's a good thing because the standard price is $9000 per month. This is less expensive that some other infusion drugs I've been given while on private insurance. Now though I am on Medicare and don't know how much of the cost they would cover. The part "D" drug portion has already been a disappointment and I've only had it for a month. 

The Bad news is that Vicki has been sick the last week and we don't really know what was the cause. She is better today and I am thankful for that. In addition to that bad news is the length of the study and the possibility that I will be unable to work on the RV due to side effects. We'll see.

That's it for now,