It’s a beautiful Colorado summer day.  The sky is blue from horizon to horizon.  The temperature is a comfortable 80 or so.  Just had a four and a half day walk to clear my head and enjoy being here.

But, I saw my urological surgeon for a checkup this morning.  The bladder cancer has come back.  I will have to undergo the same procedure that I had one year ago and probably some other treatments after that to try to prevent recurrence.  I was told that there is a 50% chance of recurrence a year ago.  My brother David has also had all of this happen to him just six months ahead of me.  For both of us, there is a high survival rate if it is treated quickly.

In addition, I had a blood test for blood sugars today and the results are already back.  Slightly higher than the maximum range. There will be all kind of diabetes noise from the doctors.  I will have to make sure that they understand that Sandostatin LAR that is injected into my rear end every 28 days for Carcinoid cancer is known to cause a lot of variance in blood sugar level in some patients.  I am thinking of trying just one injection a month meaning 20mg rather than 40 mg a month since my symptoms are very little or non-existent right now.  The only troubling thing is that Sandostatin has now been proven to slow the growth of Carcinoid tumors as well as treat the symptoms.

As of January this year, another drug called Lanreotide (trademark Somatuline) was approved for slowing the growth of Carcinoid cancer and is known to control symptoms in many patients.  I mentioned it to my oncologist a few month ago and it seemed that she had never heard of it and thinks that it is not in my HMOs formulary.  I may need to start a crusade for them to accept that.  It is known to work often for patients who cannot tolerate Sandostatin because it makes them sicker.  Specialists are beginning to switch patients who have experienced atrial fibrillation (like me), varying heart rates (like me) and varying blood sugar levels (like me) because all those can be side effects of Sandostatin. The injections are supposed to be less painful as well.  I wonder how hard I will have to work to get that.

I am co-leader of the Colorado Carcinoid Cancer Support Group (www.cccsg.net). Last week 30 of us had dinner with Dr. Eric Liu, a renowned specialist in carcinoid who just moved to Denver and has started a carcinoid clinic.  There are so few clinics like this and he is already well known… Patients are already planning to come to Denver from all over the country.  I am planning to find a way to get my HMO to refer me to him (and pay) to form a treatment plan.  If surgery is a necessity, I will again find a way to refer to him (and pay) because he is a highly skilled surgeon who has handled only carcinoid patient for years.  He sees more carcinoid patients in a week than the clinic I go to with six oncologists sees in a year.  For my health, if I have to, I will leave the HMO and seek other insurance.  This is difficult because in all ways but the rare disease (even there they are better than many and I feel they care) I have been well cared for and I would lose all those doctors.  Leaving my insurance would be impossible were it not for the Affordable Care Act and Medicare because no insurance would voluntarily cover a someone with a rare and expensive cancer.

I guess we will have to wait and see how all of this works out.

Namaste,

Cy

Copyright secured by Digiprove © 2015 Cyril Ball

I have had troubles with a lower than average heart rate for years.  It started before my carcinoid diagnosis, but, seemed no trouble – non-threatening.  It has gotten worse in the last couple of years.  My heart rate would drop below 50 bpm, sometimes as low as 35 and stay low for 10 -20 minutes.  My blood pressure seemed to be dropping as well. At such times, my brain felt fuzzy and I could not stand. It occurred at unpredictable times. That could create dangerous situations.

At the mid-winter carcinoid conference, I had the good luck to speak with an oncology assistant professor of UC.  He told me that a connection between that condition and carcinoid cancer is known but “exceedingly rare”.  How lucky for me! Ha!

I had an appointment with an electro-physio-cardiologist last month. In his office, my average heart rate was 52 and they want it to stay 60 bpm or more.  We determined that a pacemaker could help me. Yesterday the implant was done and I am home recuperating today.

The procedure took about an hour and I spent the night in the hospital.  Since the anesthesia was not general anesthesia but very light and intended only to be like sleep, there was little danger of carcinoid crisis.

It may take a few days to get used to but, I should feel more energetic. I will probably be able to ride bikes again safely.  In general, physical activities and changes of altitude and traveling should create fewer problems for me.

How will it affect the carcinoid cancer? I will not be able to have an MRI because they would break the pacemaker.  I have only had one MRI since my carcinoid diagnosis anyway. A good thing is the pacemaker should greatly reduce the problem of carcinoid crisis during surgery and anesthesia.

The pacemaker that I have is built to last 12 years.  It comes with a separate  communication device that hooks to the phone line and then contacts the pacemaker by radio and collects data daily and sends it to a pacemaker center where software can notify my doctors if there appear to be problems with my heart or with the pacemaker.

As of May 29, 2015, the pacemaker is successfully holding my resting pulse at 60 bpm. It does change the pulse rate upward as I move around. It has evened out my pulse  which was often bigeminy (beat.beat..beat.beat) to normal (beat.beat.beat.beat). And I woke today feeling rested and and well.

To me, this is a good decision with little risk.  I will let you know in the future if it works as hoped.

May we all have the best possible outcomes,

Cy

Copyright secured by Digiprove © 2015 Cyril Ball

Finally!  I have a report from the cardio doctor.

Basically:

• There is occasionally slowing down of the heart (bradycardia).  This could be treated with a pacemaker.  They say I don’t need to have a pacemaker until the condition makes me uncomfortable.  I knew all of that already.
• There is an irregular beat in one portion of my heart.  It beats slightly ahead of the rest of my heart.  No treatment suggested.
• There is little or no sign of atrial fibrillation (AFIB) which was the major problem in 2012.
• A very important finding.  There is no sign of Carcinoid  Heart Disease, which is a problem of heart valves that occurs in patients with metastasis to the liver.  I am checked for this every year.
• No change in treatment is recommended.

So, it’s all good I guess.

On to the next thing…

At my age you cannot walk past a doctor’s office or hospital without some new diagnosis.  It’s a drag sometimes.

As you know, I have a CT Scan every 3 to 6 months to keep watch on the carcinoid.  My latest scan was March 19.  I just received the news that there is no change in the liver tumors which is good.

But, (I hate “but”, don’t you?) they have seen a lesion on my urinary bladder.  A lesion is any abnormality or damage in the tissue.  Medicos use the term lesion for tumor as well.  I am now scheduled to see a urologist for a cystoscopy (they look inside through a long tube which I know from experience is not very fun).   Yippee! Yet another doctor in my contact list.

While we do not know that this is anything serious, I felt that I should at least inform myself a little.  Searching the web, I find that

• Carcinoid of the urinary bladder is extremely rare. If this case is carcinoid then it could be my unknown primary or it might be a metastasis (very, very rare).
• Most lesions on the urinary bladder are malignant.
• Many lesions of the urinary bladder are fairly easily removed and maybe cured by cystoscopy.

So what?  We don’t know at this time how any of this relates to me and my own, personal bladder, liver, and carcinoid tumors.  We are each different.  I am going to choose not to worry until there is more concrete data to discuss.

I presented the above material more as educational about carcinoid.

May we all have the best possible outcomes,

Cy

Copyright secured by Digiprove © 2014 Cyril Ball

I am still wearing the event monitor but only for a few more days.  The cardiologist’s nurse called yesterday to tell me that so far there is little or no sign of atrial fibrillation and they believe the drug that I am taking for that is working and probably shouldn’t be changed.  There are a few occurrences of slow heart rate and it could be treated with a pacemaker but does not seem necessary unless the low rates make me uncomfortable or likely to pass out (I don’t get that feeling).  There is an irregular heartbeat but again there is no recommended action unless it make me feel bad.

So, for now,  I think we will just watch and wait.

Copyright secured by Digiprove © 2014 Cyril Ball

As I mentioned two weeks ago (Cardiac Concern), I had to wear a Holter Monitor for a week because of a low heart rate incident.  I did that and turned it in and waited for week.  There was no call from the cardioligist, so I called them on Friday.  They were confused because they had intended to order it for me to wear for the monitor 30 days but instead it was ordered for 7 days.

I had two incidents of atrial fibillation symptoms during that time.  Those symptoms had not occurred since long before my surgery last year.  I was working on installing ceiling lights in a kitchen and apparantly working with a heavy fixture over my head brought it on.  The cardioligists did not seem concerned about that.  However, there was at least one event that I did not detect but the Holter Monitor did detect when my heart rate fell to 35 again.  They still don’t know why or what to do.

They have decided that I must get fitted again tomorrow for the monitor and wear it for 30 days this time.  I hate that because going to the gym is embarrassing with the electrodes on your chest and the wires hanging down and also I wouldn’t get to use the therapy tub or steam room.  Oh well,  maybe we will figure it out this time.

Again… More will be revealed. Maybe.

Copyright secured by Digiprove © 2014 Cyril Ball

About two weeks ago, after a workout and lunch, I stood up from my desk and felt a distinct fuzziness in my head and it did not go away. I immediately grabbed a heart rate monitor that I have in my office and watched the numbers. My heart rate was 35. It climbed back to 55 after about 15 minutes and I felt fine.

Early this week, I mentioned the episode to my Oncologist during my quarterly visit with her.  She messaged my Cardiologist who conferred with my Cardiac Electrophysiologist (that’s a mouthful).  My Cardiologist had me come in yesterday and have an echocardiogram (ultra sound of the heart).  Also, I got fitted with a Holter Monitor that I must wear for a week.  A Holter Monitor is a little black box that is hooked to EKG style sensors on your chest.  It has a “Symptom” button that you press whenever you feel any cardiac symptoms occurring.  It then saves the 30 seconds prior to the button push and some time after the button push.  The monitor also saves any cardiac events that it senses even if you have not pushed the button.  When the device’s memory is full, it beeps and the patient has to dial an 800 number and have the monitor send it’s data to a collection point.  Employees at the collection point may ask you what you felt and record that data as well.  Your doctors can then review the data online.

I have worn one of these before when I was having a lot of atrial fibrillation.  At that time there were a lot of symptoms.  This time, I think there will be few or none.  Since my liver surgery last year, I have had no symptoms until two weeks ago.  I believe there is some connection between this heart slowdown (bradycardia) and carcinoid tumor or perhaps the Sandostatin injections that I get every 4 weeks.  However, years before I was diagnosed with carcinoid, my resting heart rate could fall to as low as 42.  Was it because I already had developed carcinoid tumor?  No one knows.   My doctors are doubtful of a connection between carcinoid and afib or bradycardia for that matter.  There is a known connection between Sandostatin and afib about 15% of the time.

“More will be revealed.”  Maybe.

Copyright secured by Digiprove © 2014 Cyril Ball