Mid Winter Neuroendocrine Conference 2016

Saturday February 6, the University of Colorado will host our Mid Winter Neuroendocrine Cancer Conference.
The agenda and a link to registration are posted on the Colorado Carcinoid Cancer Support Group website:
http://cccsg.net/

This is the first year that the University of Colorado Cancer Center has hosted and arranged this and we are excited to attend it.

Digiprove sealCopyright secured by Digiprove © 2016 Cyril Ball

Scotland, Carcinoid, etc. January 2016

We returned yesterday from Scotland. We took grandparent Christmas to the Derek, Kat and Ansel there. It was fun.

The weather was not as bad as it could have been.  Temperatures between 31 F and 40 F.  Some days of drizzle. The Scottish word ‘dreich’ describes wet, cold, overcast; we had some of that, but, no wind and storm from the North Sea.  We were fine, if a little cold, walking around the town.

This was the second trip to Anstruther that we stayed at a bed & breakfast called the ‘Lahloo Bed & Breakfast’.  It is named after an old clipper ship.  We enjoy the proprietors, the rooms, and the breakfasts. Its location is perfect, just a few blocks from our son’s house and a short block to the picturesque harbor.  If you would like to know more about it go to www.lahloobandb.co.uk.

As usual, I experienced the carcinoid syndrome for about half the trip, but it was controlled pretty well by drugs.  It did not prevent me from being able to confidently take long walks and bus rides.

Now that we are back in Denver, I will schedule the bladder procedure to remove bladder cancer.  My new urinary cancer specialist says we should probably also plan on the biologic treatments.

Also, within the next couple of months I will be scheduled for scans to assess the progression of the carcinoid cancer. A CT scan and the new (to the U.S.) GA-68 scan are in my future.  The GA-68 scan produces much better pictures of the location of the neuroendocrine cancer tumors than the octreoscans that I have had annually in the past.  When matched with the CT scan, the doctor may be able to more exactly locate the tumors in my body.  I probably will also schedule a minor, day surgery to remove two lumps from my breast to determine if they are NETs or breast cancer or just benign lumps.

You can be sure that I will write about that stuff as it happens and results are known.

May we all have the best possible outcomes,
Cy

Digiprove sealCopyright secured by Digiprove © 2016 Cyril Ball

Thanksgiving, Christmas, Cancer

This Thanksgiving was spent in San Jose, CA. My brother Tony had lung cancer surgery. One lobe and a dozen lymph nodes and a piece of rib removed. We got good news. He is classed stage 2A. The cancer has not spread as far as they can tell. He now has to decide whether to have chemo.

I went there to aid and support him. He recovered so quickly after leaving the hospital that he was driving and cooking within 3 or 4 days. His son Cy and Cy’s fiancee Jordan provided us with a turkey dinner. Then his daughter Elise and her partner Carol provided another turkey dinner.  We ate well. It was good to get to know them all.

A good thing for me was that I continued my daily walks and during my walks I found a Vietnamese Buddhist temple.  I went there 4 times for meditation. It was a beautiful, serene place.

On returning here, I have had my last Sandostatin injection for neuroendocrine cancer at my HMO. Next month I will start going to Dr. Liu’s offices for that. Hoping that this will be a positive change in my life.

Today, I got an unwelcome Christmas present. The bladder cancer has recurred. Because I I am changing insurance, I will wait until next month to see a new doctor and get their opinion and action plan.  I am told that the cancer is very low grade and that I should be able to wait a couple of months.

Despite the bad news, our house is decorated for Christmas and we will have a good crowd here this weekend for a holiday dinner. I am looking forward to it.

Merry Christmas, Happy New Year, Happy Holidays, Namaste,

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Carcinoid and Results Based Medicine and Me

After over 4 years of battling my HMO and my oncologists to get the treatments that I knew were recommended by specialists in the field, my oncologist finally sat down and told me that she would likely have arguments over any orders of my new Carcinoid Specialist (her current objection is simply some new blood tests). She told me why… The HMO and she are committed to results based medicine. As a result, I am leaving her and the Kaiser Permanente HMO.

Caution, these thoughts are my understanding and opinions.  I am not a medical professional.

As a statement, “results based medicine” sounds good and if your disease is well known and thoroughly studied, it possibly is good. Results based medicine (also known as Evidence Based medicine) means basically the physicians will only use medicine and treatments from well designed and conducted research.  In addition, the results of that research should be made available to physicians through guidelines from professional sources, guidelines and checklists.  This is great. It tends to protect the patient and the doctor and make the doctor’s work more efficient.

Why then must I leave my insurance company? What does “results based” mean to me?

I have neuroendocrine cancer. This is a disease which is rare and poorly understood. There are very few medicines or treatments which qualify as “results based”.  In fact, my doctor has complained that there are no guidelines for neuroendocrine cancer (there are guidelines but they are not 100% results based).  The only treatments that qualify as “results based” are a couple of drugs that treat the symptoms and might inhibit tumor growth a bit and maybe a treatment called embolism which has been used for many liver cancers for years.

That means that my doctor and my HMO believe that only my symptoms should be treated by a limited number of drugs which are known to stop working after a few years and that the doctors will monitor the progress of my disease with a limited subset of the possible tools to check how sick I am. Actually it is not really very important to monitor the progress of the disease because they do not allow themselves enough options to change the strategy anyway. To me: this is something like ongoing hospice care, by which I mean they only attempt to keep me comfortable while the disease kills me.  It amounts to a refusal to treat me with the advancements currently being made and known by the specialists in the field. In fact, my doctor evidenced disdain for specialists.  Note that most neuroendocrine specialists treat more cases in a month than my oncologist or any nonspecialist oncologist will treat in their entire career. The specialists might know something that the others don’t.

Should I be satisfied to get sick and die because those doctors have committed to only certain standards of treatment?  I don’t think so.

I think that any patient with neuroendocrine cancer or any rare or unusual disease should find out if their docs follow only “results based” medicine or not.  I think that, ethically, doctors should be obligated to tell patients what that decision means for them instead of playing verbal games when the patient suggests a new treatment. If their doctor claims to strictly “result or evidence based medicine”, any neuroendocrine patient should get away from that doctor or insurance as far and as fast as they can.  That doctor will not treat the disease.  The patient will likely get sicker sooner and die earlier than need be.  We patients do not have the obligation to die for the doctor’s beliefs.

I have wasted 4 years battling doctors/insurance who only wanted to treat symptoms. when I asked for a standard tumor lab test called Ki-67 which measures tumor growth rate, they answered “Why? The treatment would not change no matter the rate.” Anybody who has dealt with cancer knows that how fast it is growing is very important.  By being obnoxious I managed to get chemoembolism but that only worked for a few months.  After getting progressively sicker for a year and being told that surgery as a treatment was not proven in a double-blind study and that it might kill me (true but not likely), I went to an outside doctor who wrote an opinion that I should have surgery as soon as possible. My oncologist caved and approved it but was never happy about it even though I have felt better in the two years since the surgery than I felt in the 3 years before the surgery.

Thank goodness for Medicare and the Affordable Care Act. Thank goodness that this month is the Medicare Open Enrollment Month.  Changing Medicare Advantage Plans was easier than I thought it would be.  I should note that I had to go to a Medicare appeal process recently after the HMO denied a request for referral to the specialist. They then denied my appeal.  Medicare requires that they get to review a denial of an appeal.  Medicare reversed the denial saying this:

“The enrollee has been proactive regarding his disease and although carcinoid tumors are often seen by medical oncologists and surgeon, it is not their major interest; new regimens and drugs are always being considered.  Consulting with a specialist in his disease would be appropriate for this patient.”

and

“Our MAXIMUS Doctor Consultant says that the enrollee should be allowed to consult with the OON (out of network) specialist due to the plan’s network having insufficient expertise in this enrollee’s condition.”

Now I have changed plans, I can have my Carcinoid Specialist as my normal oncologist, not just a consultant. The problem is that now I also have to select a Primary Care Physician, a Cardiologist and a Cardiac Electrophysiologist and a Urinary Surgeon but it’s worth it.  I already feel better.

May we all have the best possible outcomes,

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Remarkable trip to Scotland

Thursday evening we returned home from a ten day trip to Scotland where we visited our son Derek, his wife Kat and our sweet 2.5 yr old grandson Ansel.

Kat, Ansel, Derek
Kat, Ansel, Derek

We also spent two full days in Edinburgh seeing and re-seeing the sights and museums.

Why was it remarkable? There were two reasons:

  1. The weather was dry and partly cloudy with highs in the mid 50s Fahrenheit. For this time of year that’s unusual.
  2. Very little trouble with carcinoid syndrome especially the diarrhea.

The carcinoid syndrome always happens when I travel but this time I used a prescription recommended by the carcinoid specialist that I saw three weeks ago. It was diphenoxylate/atropine (Lomotil).  It worked quicker and more reliably than the over-the-counter remedy which I had been using Loperamide Hcl (Immodium).  The Immodium worked but I had to take more than recommended and it took hours sometimes.

We walked for quite a bit in Edinburgh, Anstruther and St. Andrews.  I was disappointed that I am a bit weaker than I used to be (not a big surprise).

We had a lovely time visiting Derek, Kat and Ansel.  Spent a lot time spoiling the little guy.  That’s what grandparents are for!

 

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

My first consult with Neuroendocrine Cancer Specialist

The consult with Dr. Liu was today and it was wonderful.

No change in the treatment is recommended. He says the known tumors are too small to do anything about. He is also not concerned about unlocated primary.  It’s common and could even be hidden in the liver on some structure.  I have never heard that before!

He believes that the lump in my breast “feels like a carcinoid” and should be removed and biopsied.  He says that the sample should compared to the previous biopsy from my liver. I did not really understand why, but that is supposed to make the neuroendocrine diagnosis easier. If it is carcinoid, no other action is necessary.

He has requested three new blood tests that should be sent to ISI for analysis.

  • 5-HIAA, plasma not urine
  • Neurokinin A (substance K)
  • Substance P

Some other symptoms that I have which I thought might be carcinoid related (sudden blood pressure drops, breathlessness), he thinks not. He recommends more work with cardiology.

All in all, this is good.  My neuroendocrine cancer is stable. I happen to feel well currently also.

May we all have the best possible outcomes,

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Colorado Carcinoid Cancer Support Group – September 2015

We had a great quarterly meeting of the Colorado Carcinoid Cancer Support Group.

  1. There was some discussion of the value of CBD (the non-psychoactive part of marijuana).  Some members are getting pain relief and perhaps other benefits such as sleep. A couple of members are also being treated with mushroom formulas from Chinese medicine.
  2. I talked about how Medicare had reversed my HMO’s denial of a referral to a specialist and how I had filed the appeal.
  3. Jeanne could not be at the meeting to talk about the Midwinter Conference.  We do know that it is planned for February 6, 2016.
  4. We had planned to distribute the Healing NET Foundation booklet for physicians but it has not arrived yet.  However, one of our members said that it can be downloaded from the website: Healing NET Healthcare Professional Resources. The name is “NET Primer for health care professionals”.  We hope to get the shipment of booklets soon.  I can distribute it from my home if anyone needs it.  I plan for my oncologist’s office to have several copies.
  5. As we did last time, we went around the table and each described our journey with neuroendocrine cancer. This is moving and informative.  I personally learn something every time.  There is definitely great emotional benefit from being able to sit face-to-face with others who have the same disease and discuss the problems, symptoms, treatments, doctors and the good and the bad.

We all get so involved in the stories and discussion that the meeting lasted three hours.  I am very grateful to be part of such a group.

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Another Fishing Trip 2015

This time, my friends and I went to Salida, CO and fished the Arkansas River.
For me, the fishing was tough. I did not catch many. A couple of my friends did much better. However, in true Colorado style, the day time temperatures were in the mid 70s Fahrenheit. They dropped to the mid 40s during the night. The weather was great. Always remember this: “Trout don’t live in ugly places.

We did not camp this trip, we rented a house in Salida. It was new construction and quite comfortable. Two of the three nights, we cooked our suppers. One night we ate at a restaurant that we had not tried before. It was pretty good. We cooked breakfast every morning and prepared a lunch of sandwiches and apples for lunch.

My friend Ed was driving us back to his Frisco condo on the last day. However, he had volunteered to do a river watch. The river watch consisted of 4 or 5 volunteers and a couple of National Forest people going to a stream named Chalk Creek in the area of a ghost town named St. Elmo on Mount Princeton.

We checked five places on the creek for width, structure, water temperature and oxygen content, took samples for water quality chemistry and collected underwater insect life to be analyzed by a specialist.  This is the website: River Watch Colorado

By the time we met and drove up the mountain and onto rather rough jeep roads and checked the five places, we worked about 6 hours.  It was rewarding and fun.

There was very little problem with my carcinoid cancer.  One of my friends brought a large amount of chocolate goodies and I’m afraid that I cannot resist it when it’s easy to get.  My carcinoid syndrome did occur after the second day of eating too much chocolate and stayed with me until I got home.  A short explanation of this can be found in my blog post: Carcinoid doesn’t like chocolate.

I hope my readers can have such fun and rewarding times with good friends!

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Amazing things do happen!

Today was a great day! Medicare reversed a denial and is requiring my Medicare Advantage insurer to cover my consultation with Dr. Eric Liu who is a renowned specialist in Neuroendocrine Cancer and who is now in Denver.

The background is this: At my request, my oncologist wrote a referral to Dr. Liu.  She warned me the the Medicare Advantage HMO would probably not approve it.  She was right.  They denied the referral saying that the HMO had the knowlege and facilities to treat Carcinoid Cancer within their network.

They have an appeal process.  I wrote an appeal and included the NANETS 2013 Guidelines for the Diagnosis and Management of Neuroendocrine Tumors and the NANETS 2010 Guidelines.  These guidelines were unknown to the oncology dept. where I am treated until I showed them to the doctors.

The HMO denied the appeal, but, because this insurance is a Medicare Advantage plan, Medicare requires that they get to review the appeal and denial.  After review, Medicare reversed the denial! The health insurance is required to pay for my consultation with Dr. Liu.  Socialized medicine worked for me!

I will certainly blog about my visit with Dr. Liu after it happens next week.

In other news, I am going fishing again tomorrow for three nights.  We are not camping this time. We are renting a house in Salida, CO on the Arkansas River.  The weather in Colorado has been amazing and I am looking forward to good weather and good fishing.

Namaste,

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Another Camping Trip!

Yesterday I got back late from 4 days, 3 nights sleeping in a tent and fly-fishing in Wyoming about 20 miles down a dirt road from Encampment. What a great trip! There were three of us, all over sixty ( two if us are 68). We each had a poor day of fishing. We all had very good days of fishing.

I was very happy that I had two days of almost exclusively dry fly fishing over rising trout (and catching them). Each of us had a best combination of flies. I fished a big fluffy stimulator and a quite small (size 18) parachute blue winged olive behind it. Even when I could not see the small fly, I could see the big fly jerk when the small fly was taken. Of course, a couple of exceptionally hungry fish took the big fly for some extra fun.

I had a kind of scary episode. The first morning one of my friends and I walked about a mile in our fishing gear over a rough jeep track to a point where we could wade across the North Platte River. It was knee high at worst and about 20 to 30 yards wide. It’s the kind of river that the bottom is covered with both round and irregular, slippery rocks (think greased bowling balls). Almost half way across, I was gasping for air. I could not seem to get it into my lungs. After standing in the current for a few minutes I was able to wade back and sit on a rock for about 15 minutes. I decided to fish closer to camp and walked back. The fishing was worse near camp and I only caught one fish the whole day. That’s my bad day. Why did I have the attack? We don’t know. It could be an effect of carcinoid cancer. I have had it a few times before. It could be heart. It could be asthma (I tried my friend’s albuterol inhaler and it did no good).

The second day we took a four wheel drive SUV on the jeep track and I still lost my wind a bit just before I finished crossing the river but I made it. The fishing was great on the other side after we walked another half mile on rough game and cattle trails. I never had another problem breathing.

The daytime temperature got to perhaps 72 degrees F.  Bright sun all day.  Nights got pretty cold.  You could see your breath in the morning when you got up.  It was probably below 40 degrees.  The campfires were good.  The milky way was magnificent.  Only two other campsites were occupied.  In other words, it could not have been better.

That must be one of those best possible outcomes that I mention from time to time,

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Travel, Fishing, Bladder Cancer, Misc. August-13-2015

Travel, Fishing

Sunday through Wednesday I had the pleasure of staying with a friend in Frisco, CO. Frisco is a small town in the mountains of Colorado at about 9,075 ft. (2766m.) altitude.  It is near several well known ski resorts. The first day there we had the pleasure of walking around an outdoor art festival in the Frisco Main Street. Then, we drove to the Copper Mountain Ski Resort to their Guitar Town festival which featured an outdoor stage. On the stage all day, well-known electric guitar players and their bands entertained us. It was free and very much fun.

On Monday, we drove to the Arkansas River and fly fished there for a couple of hours with no luck. Then we drove toward Independence Pass and fished the Lake Creek which feeds Twin Lakes.  We were likely over 10,000 ft. (3048m.) altitude. The fishing there was great!  We each caught rainbow trout in abundance and my friend Ed also caught a brown trout and a brook trout.  We had the creek to ourselves and a beautiful Colorado day.

Tuesday, guess what? Another beautiful Colorado day! We decided upon an adventure and drove over Ute Pass to fish the Williams Fork River.  We took a road that we were unfamiliar with.  Right where it dead-ended on the west side of a huge molybdenum mine, we found a tiny creek called Darling Creek.  We fished a small hole near the road and caught numerous brook trout in a short time.  Then we drove back along that road a few miles and fished an area of the Williams Fork River that we had never fished before.  Again, we caught many brook trout and Ed caught a larger rainbow trout. It was an exceptionally beautiful place even for Colorado. “Trout don’t live in ugly places.” Again we were well over over 10,000 ft. (3048m.) altitude. This second day of fishing tired me a bit and I certainly got winded climbing steep river banks and wading the rivers.  I believe most people would find activity at that altitude a challenge, so I feel good about it.

Wednesday morning I drove back to Denver (a mere mile high or 1609m. altitude.) and went to a followup meeting with my urological surgeon.

Bladder Cancer

Great news!  The cancer is very low grade, not aggressive, below T1 grade in the T0 to T4 grading system. However, it often recurs. We decided that I would not need the followup BCG treatment unless the cancer does recur. The doctor had put some kind of chemo in my bladder during the procedure two weeks ago and it was removed the next day. This is supposed to help prevent recurrence.

We also decided to avoid surgery for my overlarge prostate gland, if possible.  I am now taking a second medication to try to control the symptoms that I have from BPH (benign prostatic hyperplasia).

Misc.

Today is Thursday.  I started on my normal morning walk.  Immediately I noticed that the pains in my intestinal area were a little worse than normal.  People with mid-gut carcinoid cancer often have pain in our gut. In my case, I don’t usually have it every day, just some days and it is usually very low intensity, not enough to hamper activity.  It can be on one side or the other or both. Sometimes it is in the liver area but more often lower than that. Today it was a little worse, on both sides but not the liver, but I decided to power through it and keep walking.  The pain never changed neither got worse nor better. I think maybe it is the disease’s (or just my old body’s) reaction to the changes in altitude.

Also, my spine with a degenerating disk and arthritis was bothering me.  This was probably worse because of the wading and walking in the mountains.  Wading has been compared to walking on greased bowling balls.  The streams this week were a smaller gravel so not as bad as large stones but still the factors of walking, balancing, slipping and stumbling in a river do stress my back. I am 68 years old and many people have quit fly fishing by that age.  I am lucky to be able to continue with it.

I was able to walk about 3.6 miles.  Not as much as I had set out to do, but acceptable in the circumstances. In meditation studies, I have learned that pain is a teacher.  I know many spiritual paths believe that.  With meditation, we attempt to learn to just sit with our pain, whether physical or emotional, and embrace it (cuddle it like a baby is one teaching).  Once we have recognized, acknowledged our pain, we are taught that we can live with it more readily. Thus far, these studies are helping me.

May we all have the best possible outcomes,

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Update on Bladder Surgery July 29, 2015

Five and a half hours ago, bladder cancer surgery was finished. The surgeon was pleased with it. He was able to apply some chemo to the site which might help prevent recurrence. He says the cancer is low grade type but does tend to recur often.

Everyone was well versed in the octreotide protocol, which they called the Woltering Protocol. No carcinoid crisis happened so far but they will monitor me through the night. The pain is well managed. I am in an intermediate care unit. That’s one step down from intensive care.

In two hours the nurse says that I will be taking a walk and I feel good with that! I will be taking a nap now to be ready.

Namaste,

Cy

EDIT:  July 30, 10:00 am, Being discharged!

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball

Another Cancer Treatment

I reported in the previous blog: A Beautiful Colorado Day, But… about a month ago that the bladder cancer has recurred.  It’s very important to treat this cancer quickly, so the procedure is scheduled for Wednesday, July 29 at 7:30 AM.  I have to be at the hospital by 5:30 AM!

The procedure is to scrape the inside of the bladder to remove all traces of the cancer.  Since this was done already about a year ago, they have to scrape an extra layer of cells from the bladder lining.  This can be a bit dangerous as the deeper they go, the higher the likelihood of puncturing the bladder.

I had the pre-op meeting last week.  Since I have carcinoid cancer, extra precautions have to be taken when I am under anesthesia to prevent carcinoid crisis.  I reported here: Busy Cancer Day , about my pre-op meeting last year and my preparations for it with information for the physician’s assistant who met with me.  I was prepared again with all that information since I did not know who I would be meeting.  It turned out to be the same PA and she had already looked up all the information that she had scanned into my patient record last year.  She is trying to get the same anesthesiologist since he already knows the protocols for trying to prevent carcinoid crisis.  If he cannot be scheduled then we have to make sure the anesthesiologist assigned to me has all the information and is prepared a week in advance.  The large amount of octreotide required in the protocol needs to be ordered from the hospital pharmacy at least three days in advance because they do not carry it in stock.  Obviously, having a cancer is pretty inconvenient and fearful.  Having a cancer and a second, rare cancer is even more so especially if that rare cancer wants to kill you when you get anesthetized.

The bladder cancer procedure is said to be a “day surgery”.  In fact, the patient is scheduled for one night in the hospital.  In my case, I will be scheduled for one night in the Intensive Care Unit (ICU) because of the carcinoid crisis danger.  Some of the intensive care nurses and I already know each other by name and sight; I have been there 4 times in 4 years already.  They say that I am the only patient that gets discharged directly from ICU to go home rather than to another ward or worse (that’s happened twice; once the staff applauded).

If you can, think kind, gentle, healing thoughts and/or prayers about me Wednesday, July 29 at 7:30 AM.

Namaste (I bow to the divine in you),

Cy

Digiprove sealCopyright secured by Digiprove © 2015 Cyril Ball