A very good report from Moffitt today

I had a CTScan today. They told me that the cancer is dead. The spot is still there but much smaller and not lighting up. They told me it is the dead cancer cells that should be absorbed and disappear.
They expect it to come back but who knows where or when, Hopefully in 2 years or so.
Dr Antonia said when it does they will hit it with Opdivo and another drug at the same time. He said he has had extremely good results with this regimen.
Until then, CTScans every 2 months. He told me they were going to watch me like a hawk.
It depends on the Doctor, I had one who wanted to put me in Hospice. I told him I wanted to go down fighting and I was a long way from that. I feel this oncology team is a step up. Dr Antonia and DR Rick, he said not to try and say his last name.

1/27/17
Finished 2 weeks of Targeted Radiation Therapy on my Liver. I can't tell if it worked or not. I will find out Feb 17th. They will decide then if I need more treatments or if I'm good to go. Scans every 2 or 3 months. Keep praying it is gone and not moved to somewhere else.

Outlook is a little more positive now. we met with Dr Antonia the Opdivo specialist. He said there was no logic in doing or trying Opdivo until we see how the radiation works. Radiation has been successful in treating SCLC. That is what killed it off in my lungs. Dr Antonia wants to wait and see how the radiation works. He is confident it will work, SCLC can't hold up to targeted radiation. He said if it works they will watch me like a hawk with CTScans every 3 months.

SCLC = Small Cell Lung Cancer

Running out of choices...

Going in Monday, Jan 9th, 2013 to get location seeds put in my liver, When treatments start, it will be for 5 days in a row with targeted radiation,

After that they are going to use Opdivo. It wasn't designed for small cell or FDA approved  for Small Cell but medicare will pay of it.

I guess it falls under experimental treatments.

Kinda good news, 10/17/16

The bloodwork and CTScan were done on Friday at Moffitt. Meeting wiith DR Tan and infusion was today. The doctor was unavailable Friday. Pretty good scan result, liver tumor has shrunk by about 50% and liver enzymes are back to normal range. My optimism is tempered by the fact that small cell cancer can't be surgically removed it spreads once exposed to air, a last resort. The best they can do right now is knock it down and wait for it to come back every 1.5 to 2 years.
Irene brought up to NP Kenneth about my shortness of breath. He tested me by walking. Started out at 98% and after about 15 feet he stopped me, it was at 80%. So now I'm on o2 24/7. Home o2 generator and portable tanks. Big change for me, but you do what your DR tells you to do.
They delivered the equipment at 5:30 PM this afternoon.

Starting another 2 week cycle of chemo. A little better news this time. The reason the chemo was so harsh, it's an accumulated effect. I guess I'll just have to put up with it. Nurse Sam said the liver ensymes were back down in range. Hopefully an indication of the new chemo is working?
The legs giving out, Sam wants me to bring this to my nuerologist. I'll do that asap.

Back home, another chemo next week, then a week off. This stuff doesn't have any of the horrible side effects that I was warned about. Exception, heavy sweating for a couple of days, that's it. Oncologist was amazed about that. He thinks the lack of side effects could be a sign that it is working, No scans until Oct 14. Feeling pretty good overall. Not happy about the scheduling, very stretched out as far as I am concerned. The good part of the day was eating at Shells again, excellent seafood.

I had a scan, blood work and infusion today. They changed to chemo from Taxil to CPT-11 Irinotecan. Why? Because Taxel wasn't working, tumor ia still growing somewhat slowly, but still growing, not gone. So instead of a 3+ hour infusion every 3 weeks, it is only 1 hour each week for 2 weeks then 1 week off. Then do it again. So far it isn't all that bad. The one side effect is diarrhea if Immonium doesn't cut it then Immidol will be used, Down side, 4 times a day but you got to do whatever works.

Another series of Chemo has started...6/27/2016

I thought I was going to meet with the Oncologist today, I did and he asked me when I wanted to start my chemo. I told him today and he was surprised. We earlier talked about going home to visit family. I told him cancer treatments have a higher priority for us.

So far it's tolerable, but rougher than carboplatin and etopocide. Here's what I'll be doing for 6 to 8 months.

Stinks for Irene, I can drive to Moffitt but not home. (gives you a hint on how strong The Taxol is they are giving me)

Every 3 weeks, starting yesterday, the 27th, a 3 hour infusion with Taxol for 6 to 8 months, here we go again...The 3 hours turn into 4+ hours depending whether or not I have a meeting with with my Oncologist, Bloodwork, CTScans, etc. (what ever test they can dream up)

I fell good for now, they gave me steroids, oh yea they work 
g o o d! Problem is sugar checked 202 this morning.
Keep me in your thoughts and prayers, I'm doing to need them. I have a good attitude about this and I can handle whatever comes my way.

I don't plan on giving up my involvement with St John's Episcopal Church in Brooksville until I feel that it would be best for the Parrish.


Mark A Johnson, Brooksville

Back on chemo and on schedule. Met with the Oncologist before chemo today. We are in round 2 with 2 days to go. 6 rounds altogether. No more Nuelasta due to my reaction to it. Tomorrow and Wednesday will wrap up round 2. CT Scan in December to check effectiveness. He did say that there are a couple other options if this chemo doesn't work like he wants.
Keep praying.

Taking infusion at home now, 3 times a day for the next 5 days. There are some nurses in big trouble at Bayfront. Dr Contreras was livid because he had it set up for release this morning. They were supposed to deliver the walker this morning, they screwed that up also, maybe tomorrow morning. They were on the spot with the infusion antibiotics though. While in the hospital, I was getting 3 - 4 hour infusions per day for a massive UTI, actually 2 different UTIs.  This was my second bout and worse than the first. I don't remember much of the 5 day ICU stay, 7 day stay altogether. I am very weak and a wheeled handicap walker is supposed to be on it's way to the house. I'm tired of these UTI's, every 2 years or so they try to kill me, this time was close. WBC was down to 1.1, should be around 7. I have a powered Pic line and they plan a port as soon as they think the infections are taken care of. Meanwhile the pic can be used for blood draw, scans and whatever. Old and sick is not a good combination.  

Another round we fought and won

I'm doing this for Mark and so that I don't forget.

On Thursday, Nov 6th Mark stated that he didn't feel good.  We gave him a non aspirin and later he couldn't get out of the chair.  At 1 am he fell out of bed and an ambulance was called.  He was admitted to ICU with a fever of 101 and an UTI on Friday morning at 3 am.  He was put on antibiotics and cat was put in.  Mark was ver disoriented and not reponsive.  By Saturday his temp had gone up to 103.8 and he was wrapped in ice and a cooling blanket added to his bed.  His temp went down to 101 and then up to 102.9.  At one point, he was slurring his words and his mouth started to droop.  The nurse got to him immediately and he was able respond but very slowly.  His brain was not letting him tell it what to do.  On Sunday, our minister, Father Ken, came and saw him and did a prayer for him. I got sent home by the nurse.   An oncologist called after I got home and said he would be fine.  When I walked in Monday morning, Mark was alert and talking.  It was like a light switched had been turned on.  His temp is now down to 96.7 to 98 and is staying there.  Yesterday, was the first time he was able to get out of bed and sit in a chair.  I told the nurse he would be able to walk but they won't let him yet.  I guess it's a Johnson thing according to Roxanne.  They are keeping him in ICU to make sure his white blood counts stay stable, which they have come back from 1.1 to 7.

The scans that were done show,  no cancer in the brain.  They are planning on putting in a power port Friday morning and then he will be able to come home.  He was up and got to walk to the nurses station today.  When he comes home, he will still have to have antibiotics 3 times a day.  Guess I'm going to learn how to do it.  They say it's easy.  Sure will be nice having him home again.

Next round of chemo is on the 23rd.

They had one heck of a time finding a vein today. The one they had for 2 days quit. At least it happened on the last day of the first cycle of treatment. They went to the left lower forearm near the wrist. Bad location and it blew out. Now it looks like they want to put in a chemo port. I really think it's the low seniority nurses working the weekends.
Now I have an OBI (On Board Injector). https://www.neulasta.com/on-body-injector/
It will inject something to help with white blood cell counts to fight off infections. They used to have you come back for a shot. After 27 hours it injects the medication for 45 minutes, then you take it off and put in into a medical waste container. I should be done with chemo for 3 weeks. They told me that between 7 and 14 days are when the immune system takes a dive and stay away from crowds. I guess I'm a hermit until chemo is done, 4 to 6 treatments, every 3 weeks.
The battle continues...

HERE WE GO AGAIN...

I received my liver biopsy results today at Moffitt.
Originally they thought the spot seen on the CT Scans was a fatty deposit. It turned out to be the Small Cell Lung Cancer that has spread. The lung Cancer hadn't been seen on the CT scans since Jan. 2014. The small spot showed up in April and July of this year, it hadn’t grown but they decided to do a biopsy on Oct 19th. I will have a PET and MRI scan on Thursday.

On top of everything else my son ART has B Cell Lymphoma Stage 4 and I'm stuck here.

I am starting chemo on Friday, Saturday and Sunday of this week. Chemo will be every 3 weeks for 3 days. 

My Medical Oncologist just called. He said there is definitely something going on with my Liver. Whatever it is, it hasn't grown in 6 months and small cell lung cancer grows fast. They want to do a needle biopsy to check and see if it's the Small Cell Lung Cancer that spread to the liver or a different kind of cancer, we'll see. He asked me how a felt, I feel fine, so if it is, it's early, hopefully, HERE WE GO AGAIN! To be honest, I always felt cancer was going to get me sooner or later. Hopefully later, much later. Whatever prayer list you have, add me to it, Please.

On September 18, 2015 I had an MRI on my liver. DR Tan at Moffitt was not that concerned because the spot has been there since my April CT Scans and has not grown. He just wanted to make sure it wasn't serious.
They were 2.5 hours behind at Moffitt on the MRI. DR Tan came out into the waiting room to tell us to go home and if it was something serious or needed following, he would call me. I guess no news is good news because I haven't heard anything yet.

Everything went well for my CT Scan on July 24, 2015. Lungs are still clear. They do have some concerns about a spot on my liver. They are pretty sure it's not cancer because the type I had is fast growing, if it spreads. The spot was there and the same size in the last scan, They think it is a fatty cyst which is common. A MRI in middle September will tell them what's up with that. It's always something, 'old age ain't for sissies'.
There is also concern about the LEMS hanging on so I have an appointment with a different Neurologist on the 28th, Dr Khouri at Moffitt. He may adjust or change the LEMS medication. If all goes well, we will be on our way home on the 29th or 30th.

I had my colonoscopy today. They use Suprep instead of Golightly here. Suprep is easier to take and you are flushed in about an hour.
DR Bin-Sagheer found 3 small polyps and said they looked fine. He will biopsy them and told me if everything is OK, 5 year return.

5th CT Scan and Blood work.

We went to Moffitt today for a check up. The scans were clear and the blood work normal but
Dr Dilling wants me to loose weight, no big surprise here.

He wants to stay on a 3 month schedule for checkups for a couple of years, so my next scheduled checkup will be the end of July.

I was also told that the LEMS may never go away. I am starting to look at diet but there isn't much information available. Maybe it's time to go see my neurological oncologist. He has an office in Brooksville along with Moffitt.

Either a very short trip to Michigan or wait until August to spend a couple of months visiting.

All in all, a good checkup.

4th CT SCAN

I had my 4th CT Scan today at Moffitt. Dr Dilling said there was no activity but he wants to watch 2 other nodules closely. He said allot of people have these 'benign' nodules and not to worry about it. The original cancerous nodule is not active and that part of the lung is clear.

The next CT Scan will be in 3 months and I will meet with a different Oncologist, DR Tan, the lead medical oncologist on my case. We are starting alternating consultations with DR Dilling and DR Tan.

All in all. very good news for me.

Our Priest was surprised to hear me say that I wasn't worried that much about death. At my low point in cancer treatments, maybe a little before that, I handed all that worry over to God. That's when recovery started. I still have a balance problem but it is getting better. I doubt if I will ever get off of the Mestinon.

Appointments at Moffitt and with DR Dilling. GOOD NEWS, 6 month scans are still showing no growth and cancer activity. Fatigue might be connected to the goiter attached to my thyroid which is calcified and no threat. Blood testing should show thyroid status. Another possibility is the LEMS not going away as fast as it should. He asked me to have my Primary DR Contreras check this next blood workup.

I had appointments at Moffitt yesterday with The Neurological and Head/Neck Oncologists.

The Neurological Doctor, DR Mohamad Iqbal Saleh, seems to be a really nice guy. He wants me to take an extra Mestinon if I start feeling run down. Followup is in 4 months but he said I can cancel if I'm feeling good.

The Head/Neck Doctor, DR Tapan A. Padhya said I didn't need to come and see him again unless I had a problem. He scoped my throat which is usually no big deal except this time he went in with no local anesthetic. OUCH!

A week ago I had Labs done for a 3 month diabetes check up with Dr Contreras of Brooksville. That is our southern doctor and our primary care physician since we are down here for such long periods of time each year.

My A1C is down to 5.9 and my blood pressure has been under 100 for a while.  He decided to try and get me off of Janumet and switch to Metformin for blood glucose control. He stated that we can always switch back and to keep what I have of the Janumet for a while. He also cut my Metoprolol dosage in half to try and get the blood pressure levels in a healthier range. Both of these could be contributing to the LEMS fatigue factor. (Lambert-Eaton Myasthenic Syndrome or Eaton-Lambert)

My thyroid gland has a golf ball sized growth on the end of it. At one time, a long time ago, it may have been cancerous but now is calcified and benign. As an oncologist in Michigan put it, "No one dies from thyroid cancer".

We talked about the Parathyroid glands, influenced by the Thyroid tumor, causing high calcium levels due to an elevated Parathyroid Hormone level. The Parathyroid glands are located behind the 'wings' of the thyroid in the neck. He said high calcium levels caused by the glands wasn't likely because he, Moffitt and UofM lab work has been looking at the calcium levels. High calcium would show up in lab work all the time.

He was kind of taken aback by my knowledge of what is happening in my body.

We now have handicap plates on all vehicles, in Florida and Michigan. (Yea!)

The news keeps getting better but I realize it can turn around in a very short period of time.

Keep praying, that's what I'm doing.