Thursday, August 17, 2017

Bewitched, Bothered & Bewildered

I got my dates mixed up on the 2nd cycle. I actually finished taking the pills on Monday the 14th, but won't get my scan till the 22nd at Scottsdale Mayo. I am easily confused these days.

Went to my cardiologist today for another 6 month check and all was well. I have been running on my bypass for 4 years now. I see him every six months so things don't get out of hand with blood pressure and other heart stuff.

I worry that all the drugs I've been given will damage my heart or my one kidney. I was told by my hemo nurse that the current drug I'm taking is processed out of my system by my liver. That's another organ to worry about.

I may get to take a smaller dosage of Stivarga in the next cycle. It depends on the scan results. They think I shouldn't be as tired as I am from the drug. We'll see. I want to be more active.

No more news from here.

Hang in,

RT

Saturday, August 12, 2017

Close to Finishing Cycle 2

There are just a few days left in my second month of the Clinical Trial. On Monday I will get lab work and a CT Scan to see if the drug has had any effect on the tumors in my lungs. In addition I may get a full body scan. My Hematology Nurse wants to see if something organic is causing my headaches.

I have days with some energy and days with none. The nausea comes and goes along with the corresponding digestive issues. My weight is staying around 160 pounds, a little low, I continue to try to eat as much as I can.

I have procrastinated on the RV parts. I still need to order a battery disconnect switch and a solar battery charger and solar controller. Just haven't had much energy to do anything lately.

Vicki is still struggling with her right shoulder. In addition she pulled a muscle in her stomach lifting a case of water last week, so she is hurting a bit. We are chilling this weekend. We'll watch some Game of Thrones tonight and maybe a little Saturday Night Live. Other than that we will rest up till Monday.

We have to be a Mayo Scottsdale at 6:45 in the morning on Monday. That means we have to get up around 4 or 4:30 in the morning. That's much too early for us.

I have both labs and a scan at Scottsdale, then afternoon appointments at Phoenix Mayo. It will be a long day. I just hope the scan shows something positive this time.

That's it from here.

Hang in,

RT

Sunday, July 30, 2017

Second Cycle

I started the second month of the Clinical Trial last Tuesday. It is referred to as the second cycle in the Trial Diary. I continue to take the maximum dosage each day, though I have changed the time I take the pills to just after dinner. It helps with managing the nausea.

My energy level today is pretty low. I have stayed up tonight to get my stomach more under control before going to bed. I think I'll hit the sack after I finish this post.

Vicki was very tired today. She cleaned the entire house this last week, plus we had  Zero Rez in to clean the carpet on Thursday. We're just getting ourselves  back together this weekend.

We moved most of the furniture from the living room and dining room. That took a while to put back when the carpet dried on Friday. The bad news is we're both beat, but the good news is the house is clean. If only we had the energy to start working on the RV. That would be great.

Speaking of the RV, I have ordered the first set of parts needed to make a battery shut off switch and solar battery recharge system. I still need to order the solar panel and solar controller for the system. There are a bunch of products out there and I am continuing research before ordering these items.

When everything comes in I will get my mobile RV tech to come and install the system. I may need a chassis battery as well. We'll just have to wait and see.

That's it from here.

Have a great weekend,

RT

Saturday, July 22, 2017

First Month of Clinical Trial Review

Right now I'm in my off week.  Over the past 21 days I took 84 pills, four a day for 21 days. That's the maximum dosage for Stivarga. Some patients have had a harder time than me and I guess some not as hard a time.

I was hoping to feel better with more energy during this off week. So far it's been about fifty/fifty. I feel better more often than when I take the pills but I am still having trouble sleeping and I am getting headaches that so far have been hard to fix.

I have not a great deal more energy either. Today was the first day that I was able to go out. I needed to get some stuff to work on our bathroom sinks at Home Depot. Vicki needed some prescriptions picked up at Walgreens and we needed a loaf of bread. I wanted to go to the storage yard and check on the RV as well. 

I accomplished all my errands, came back to house and picked up Vicki to join me in looking after our RV. We found the front two Tire covers had blown away in a storm and spent some time looking around the Storage Lot to no avail. Worse than that though was the condition of the RVs batteries. They (all 3, the one under the hood and the two for the RV) were dead as doornails. Pretty discouraging. Now I have to get them recharged if they aren't ruined and set up some kind of solar battery minder for both the chassis battery and the house batteries. This is another project I may not be able to do.

I spent some time tonight researching RV solar battery minders and I still don't know which one to get. I think I will give my mobile RV tech a call on Monday and see what advice he can give me.

It's important that we maintain the RV while renovating it or things will get worse rather than better. During the past month I was unable to get up and go check on it and that's my fault. I should have made arrangements to have it checked at least once a week.

The only good news from all of this with the RV is that we didn't see evidence of any storm damage or water leakage.

I hope I can get my act together on this thing and as the Cable Guy says " Get Er Done."

Of course the biggest issue will be what effect the Stivarga is having on my Cancer. It will be another month before I will know that.

Have a great weekend,

RT

Tuesday, July 11, 2017

Second Scan in 2 Weeks and a little scare

So... I have been having some trouble with pains in my chest and stomach. During my appointment at Mayo on Monday I let my Hematology Nurse know that I was feeling more pressure in my chest. She scheduled an X-Ray for me that afternoon.

Vicki and I left Mayo a little after 4:00 and got home around 10 after 5. By the time we looked at our phones we both had messages from Kelly (the Hemo Nurse). Something had showed up at the edge of the X-Ray in my abdomen. A little after this a scheduler called and set me up for a CT Scan this morning.

By 2:30 today Kelly called and told me the scan was good. It seems that the X-Ray had showed what appeared to be an air pocket in my abdomen, which would indicate a perforated intestine or colon. Luckily that was not the case. I appreciate the thoroughness of the Mayo folks in spite of the scare. These people don't mess around. I feel like they are looking after me as best they can.

Another bit of good news came out of this as well. The fluid around my lungs has decreased.

I am still struggling with managing side effects, but I have just another week and then a week off. I am hopeful it will get better.

Hang in there,

RT

Thursday, July 6, 2017

The Clinical Trial

I'm almost 2 weeks into the clinical trial. The side effects have been mostly manageable with a couple of exceptions. During the first week I had a couple of times when I vomited. The first instance was pretty tough, the second a little less. It had to do with my diet and eating times and the time I took the pills.

This week has gone better so far. I met with Trial Coordinator and the Hematology nurse on Monday at Mayo and went over my condition and side effects with both of them. They suggested some options for management. 

The biggest affect the drug has had on me is fatigue. Along with the fatigue comes headaches for which I don't take medication to alleviate. The drugs that work on a headache contain naproxen or aspirin, both of which suppress platelet replenishment. Not good. Oh and one of the symptoms of low platelets is headaches. Go figure. 

So, I am trying to work stuff out each day to get by. So far, so good I guess.

That's it from me,

RT

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?

RT