I have been asked to guest blog for the Carcinoid Cancer Foundation. Click below to see it on their website!
It’s been too long since I produced some music. I really enjoyed creating this and I enjoy listening to it.
Here is a downtempo Sitar Dream:
Saturday February 9, 2015, I attended the NCCEA Midwinter Neuroendocrine Conference. NCCEA is the the Neuroendocrine Carcinoid Cancer Education Association which was formed in 2012 to support the Colorado Carcinoid Cancer Support Group (CCCSG) and the Run for Hope 5K As a 501(c)3 tax exempt non-profit organization it allows NCCEA to raise funds to provide educational programs for Neuroendocrine Carcinoid Cancer individuals to help them in the fight to overcome cancer. The conference was held in a wonderful venue called the Wildlife Experience Museum which is part of University of Colorado South Denver.
Jeanne Lambert (carcinoid diagnosed 2004) introduced our moderator. Jeanne and her husband John have been the force behind our conferences and the Run for Hope and the NCCEA. They have announced that they are moving out of those jobs. The Run for Hope has been handed over to a more generic cancer organization and it looks like we will get very little funding from it. See below for an announcement about our midwinter conferences. Jeanne & John Lambert, we will miss your activity in our behalf greatly. Thanks, and we hope to see you at our next regular meeting.
Jeanne also announced that our coordinator for CCCSG, Lesley Compton is moving to Texas. Lesley is the person who recruited me into CCCSG and has worked on it with Jeanne since it started in about 2007. Lesley Compton, we will miss you very much. Good Luck in your move. Lela Selby and Cy Ball (myself) will be co-chairs of the group starting immediately. I am excited about this opportunity and hope that Lela and I can adequately fill Lesley’s shoes.
Our moderator was Dr. Tom Purcell, MD, PhD. Associate Professor, Division of Medical Oncology, University of Colorado. Dr. Purcell is also the Associate Director for Clinical Services of the University of Colorado Cancer Center and Executive Medical Director of Oncology Services at University of Colorado Hospital. He also happens to have been my consultant on treatment of my carcinoid cancer which led to my liver surgery. Yeah, Dr. Tom.
Dr. Purcell gave a short talk emphasizing the importance of exercise for cancer patients and a surprising point that even though Carcinoid is rare by number diagnosed each year, it is the second most prevalent gastrointestinal cancer because we live longer! The number of patients is still orders of magnitude smaller than the most prevalent gastrointestinal cancer so many cancer doctors and centers never or rarely see it.
Dr. Purcell also gave us the big news that University of Colorado Cancer Center will take over sponsoring/organizing our midwinter conference! The next conference is planned for February 6, 2016.
I am not going to try to describe each talk. They were all wonderful! The videos of the talks and pdfs of the powerpoints are here (CCCSG) and I encourage everyone interested in Carcinoid to watch them and/or look at the powerpoints. I will name each speaker and the main new things that I learned. Please remember that I have heard a number of speakers and read a lot about carcinoid before this conference.
J. Philip Boudreaux, MD FACS – Oeschner Medical Center (LSU). Changing Paradigms in Gastrointestinal Neuroendocrine Tumors. Dr. Boudreaux is a very well known part of the NOLA dream team that treats NETS.
His talk was about the surgical techniques used on carcinoid.
New to me was the description of the IRE (Irreversible Electroporation), also known as NanoKnife. This is similar to Radio Frequency Ablation that uses microwaves to “cook” tumors but it uses very high voltage electricity and theoretically causes less collateral damage. Also new to me, MIBG scans which are similar to octreoscans which I have had except that they do not depend on the tumors having octreotide receptors to capture the radioisotope. Instead, the MIBG is absorbed by the cell (if it is MIBG hungry). Although the tumors are not always hungry for this, it is might be an alternative for patients whose tumors do not have octreotide receptors. Also, Oeschner will get GA-68 scan and PRRT treatment this year.
Leigh Anne Burns, Registered Dietitan at LSU Health Sciences Center, Greater New Orleans area. Nutrition Management for Patients Living with Neuroendocrine Tumors. Leigh Anne is well known as the nutrition expert for carcinoid patients on the NOLA dream team.
The new item for me here was that the constipation which alternates with diarrhea for patients like me is usually caused by the removal of the gall bladder.
Christopher Lieu, MD – Assistant Professior, Division of Medical Oncology, University of Colorado School of Medicine. The Past, Present, and Future of NET Treatments.
I liked this talk very much, but as an overview, I had seen most before. Main new thing CT scans for carcinoid tumors should always triple phase. Mine have not always been. In conversation during a break, I asked Dr. Lieu about my bradycardia (from time to time my heart rate slows to as low as 35 bpm). He said that this connection (heart rate/carcinoid) is known but very rare. Maybe I won the lottery again?
Dr. Jeanette Durham, MD MBA – Professor, Radiology-Interventional, University of Colorado Hospital (UCH). Regional Therapy for Metastatic Neuroendocrine Tumors.
New to me: embolization should be used as a treatment after surgery not before (they surprised that mine was in the reverse order). Many doctors (including Dr. Durham) believe that the addition of chemo to embolization is not useful. They perform bland embolization (TAE – Transcatheter Arterial Embolization). I had chemoembolism (TACE – Transcatheter Arterial Chemoembolization).
Dr. Rodney F. Pommier, MD – Surgical Oncology, Oregon Health & Sciences. New Frontiers in Surgery for Neuroendocrine Tumors. Dr. Pommier is a very well known surgeon and researcher and speaker in NETS.
New and amazing things. Dr. Pommier performs the “discovery” or search for intestinal tumors with minimally invasive laparoscopy. If the tumors are found (about a 90% success rate), he will attempt the resection laparoscopically and only open up the patient if necessary.
Dr. Pommier now removes carcinoid tumors from the liver without removing large parts of the liver. He has discovered that he can simply make a cut into the liver to the tumor and “pop” it out (his words). This is unheard of and impossible with any other type of cancer. I know of two other surgeons who have done it but I do not know if they continue to do it. Half my liver was removed with a tennis ball sized tumor in it. The surgery would have been less dangerous if Dr. Pommier’s technique was known.
Dr. Pommier wrote an important paper on the octreotide protocol to prevent carcinoid crisis during surgery. My surgeons and anesthesiologists have used that paper at my insistence to develop a protocol for me. Dr. Pommier has further studied it and now believes that octreotide is not useful to prevent carcinoid crisis. I would caution everyone to stay with the protocols at least until his paper is published and tested by the other experts in the field. As far as I know, all other specialists in the field believe in using those protocols.
Lastly, Dr. Pommier is performing a study which seems to indicate that people with carcinoid syndrome are cognitively impaired (memory at least). His study also indicates that, if the syndrome is stopped by medication or surgery, the impairment goes away. This could be huge. The carcinoid support groups are filled with complaints of memory problems among us (me too). The study is still in progress and not near publication.
As you can see, just my take away from the conference was a lot of valuable info. I really, really encourage all with interest in this disease to watch the videos here: Colorado Carcinoid Cancer Support Group.
My quarterly blood tests are done and they still show stable, no progression.
A few weeks ago a friend of mine posted this on facebook: how-to-get-high-without-drugs.
It’s not a hippie/druggy thing. It’s about a beat you hear when you have two different but closely related sounds, one in each ear. The effect is said to be calming, relaxing and meditative. It is called binaural beat.
I studied on this, found a number of references on the internet (even software to experiment here) and decided to remix my ambient piece “chillin it” with a background or pad made of a binaural beat. This is the result but according to the literature you have to listen to it for 15 or 20 minutes to experience the effect:
Binaural Chillin It; 2015-Jan-01, ambient and binaural beat experiment. Download
Happy New Year,
I just got a message from Oncology that my octreoscan indicates “no change, no progression”. Also Urology reports that my bladder cancer has not recurred. WOOOO! HOOOO!
Also, they noted that the two metastases in my liver are still there. No surprise, but at least there are no new ones. These are the best results that I can expect.
Urology is having me do a CT scan on wednesday just to make sure there is no cancer in my kidneys. This is apparently different from my regular CT scans for carcinoid. Will let you know of results.
This regular testing and treatment is part of the life of a cancer patient. I currently scheduled for:
- Sandostatin LAR Injections every 28 days.
- 3 to 6 blood tests every 3 months.
- CT scan every 6 months.
- Bladder cystoscopy at 6 months
- Octreoscan every year.
Waiting for test results so often can be a worry. One always suspects things are not good. In fact, I find that even though I have generally felt healthy, every small symptom can lead me to believe that things are getting worse. However, on the flip side, we need all these test to make sure things are not getting significantly worse and requiring action.
I’m glad the medical profession is watching me.
Since liver surgery a year and a half ago, I do not have weeks like this very often. Prior to that surgery and during the time that I also had atrial fibrillation (AFIB), there were many weeks filled with doctor visits. Many patients with carcinoid are constantly at doctor’s offices and clinics and emergency rooms.
Today, Monday, I merely have a dental exam and cleaning. No big deal. Most everyone has those.
This week, it is time for my annual octreoscan. For an octreoscan, the patient (me) is injected with a somatostatin analogue (usually octreotide) which has been tagged with a radioactive molecule. If there are tissues in the body which have receptors for somatostatin (a hormone we all have in our bodies), the tissue will pickup the octreotide molecules including the tags. Then radioactivity detectors called gamma cameras can scan the body and create a picture of the body with dark spots where the radioactivity has accumulated. Often carcinoid tumors have the somatostatin receptors (sometimes not at all and sometimes only some tumors have them and not others in the same person. Then detection is much more difficult). You can see example pictures here: https://en.wikipedia.org/wiki/Octreotide_scan. Carcinoid tumors with receptors will show as darker spots in the pictures. The procedure is that the patient receives an injection usually thru an IV port in the hand or arm. 4 hours later the patient must lie still with arms over head(uncomfortable) for an hour while the scanners operate. 24 hours after that, the patient must lie in the scanner for 1.5 hours for another scan. Often 24 hours after that, you get another hour or 1.5 scan and sometimes you get another one 24 hours after that. So you will be injected once and scanned up to 4 times in 4 days.
It is a pain.
So my scans and potential scans are scheduled for Tuesday, Wednesday, Thursday and Friday.
On Wednesday, I also have a cystoscopy to see if my bladder cancer has recurred. This is totally separate from the carcinoid. Wednesday is my day for a mediation group as well. At least that will be pleasant.
On Friday, I also have my every 28 day Sandostatin (a long acting version of octreotide (somatostatin)) injections. These are deep muscle injections to both sides of my rear end. I might have these every 4 weeks for the rest of my life. The injections have been delayed a few days because they might interfere with the octreoscan. Because of that delay, the chills that I feel at evening near the end of the injection cycle are more severe and last longer than normal this week. At least for now, I do not have the severe night sweats that I also had before the liver surgery.
An interesting point about the octreoscan is that I will be detectably radioactive for about 30 days. They give me a form to use in the airport if I need to travel because the airport security will detect the radioactivity and probably not very welcoming.
I promise to blog about the carcinoid cancer and the bladder cancer test results as soon as I have results.
EDIT: Tuesday Dec 9. I just returned from the first octreoscan appointment. They have changed the procedure! Today I just got the IV port with injections. The first scan is tomorrow. Now I must fast every morning before the scans so I have rescheduled the scans from 1 PM to 9 AM for the next 3 mornings. They say this will improve their images. I sure hope so.
“If you don’t suspect it, you can’t detect it.”
November 10 is Worldwide NET Cancer Awareness Day.
NET means Neuroendocrine Tumor which is a cancer that usually grows slowly and generates endocrine substances like seratonin, chromagranin A, gastrin, insulin and others. These substances are natural to your body but become poisonous to your body in large amount causing many different symptoms, illnesses and even death. This is a rare disease. Only about 130,000 people in the US have been diagnosed. Because the symptoms are diverse, it is often mis-diagnosed or not diagnosed at all. Doctors are taught not to diagnose for rare diseases. The classic teaching is: “If you hear hoof beats, don’t think zebras.” Because of this, we call ourselves zebras.
Learn more about NETs here: http://netcancerday.org/
I have Carcinoid Tumor which is a type of NET. It was discovered by accident in my liver during a CT scan of my lungs for a different possible problem. The primary tumor is somewhere in my gut but the doctors have not been able to find it. The primaries can be very small and multiple. It has metastasized to my liver which means it is incurable. I have had half my liver removed with a very large (tennis ball size) tumor in it. This blog has many entries about my struggle with the disease. To read more, start here: Carcinoid Cancer – My Story
This is my second youtube tutorial.
It is intended to teach a new synthesizer user what the common oscillator waves are. The tutorial then goes on to show how to build a simple riser as used in electronic music using the Reaper DAW.
I hope some find it useful.
Last week and this week the news (and my attitude) has gotten better.
Last week I got news that the latest CT scan showed that my carcinoid tumor was stable (still there, not growing, not shrinking).
Last week the Foley catheter was removed. What a relief! The two weeks wearing that was more unremittingly uncomfortable than any two weeks after surgery and other medical procedures that I have ever experienced.
After the Foley was removed, I did have to self-catheterize four times a day until yesterday. Not pleasant but much better than the Foley. Yesterday, I was allowed to stop because it just was not needed.
Today, I was checked for bladder cancer and none was found. I will be checked again in three months. Because of my success with the catheters and no bladder cancer, we will not do prostate surgery at this time. Wow! Yeah! I have had more dates with the surgeon’s knife than I care for. I could wait a long time for another surgery and not miss it. I will have to keep a catheter kit with me in case of problems again but that is no problem.
May we all have the best possible outcomes,
I wrote last month that the blood tests showed very low marker values. Today I got the news that the CT Scan I had last week shows that the carcinoid tumor is stable.
This is very good news.
Hopefully I can now deal with the prostate issue. Surgery is not scheduled yet but I hope to have it this month so that I will be healed enough to take our scheduled trip to Scotland (grandbaby!) next month. This week, I get trained to self-catheterize. Growing old is not for the faint of heart.
This is not about cancer but it is about other health issues old men have.
On last Friday, August 22, I was fishing with a friend in the Colorado mountains and had severe abdominal pain. Went to the Emergency Room in Frisco. I had been unable to urinate much for more than a day. They catheretized me and told me to see my regular doctor on Monday to have the catheter removed. They thought that it was an infection and gave me antibiotics.
On Monday, I saw my doc and he removed the catheter and tested that I could urinate. All seemed well. But, Tuesday morning I was again in a hospital ER in the worst pain I’ve ever had (hard to believe given my history). Again my bladder was full and I couldn’t urinate. Again, a catheter was inserted and I was told I had to keep it in until I talk to my urologist. By late afternoon I had talked to urologist and was told that it my prostate. I have had BPH (Benign Prostate Hyperplasia) better known as an enlarged prostate for over 20 years. Most men have it at least mildly by the time they are 80. I’m just lucky, I guess. It has been treated with drugs successfully… No longer. I have run out of drug options. My options are either surgery or wear a catheter for the rest of my life. A catheter is uncomfortable at times (perhaps more for men than women). I’m told you never really get used to it. There can be negative effects from surgery (no surprise there).
I will go for surgery. It will not happen until at least mid-September because of doctor’s schedule and I am not dying or in extreme pain for now.
Unfortunately, I am forced to cancel next week’s fishing and camping with best friends in Wyoming. It’s too isolated and too rough for me with this problem. I have told the doctor that I want to be healed enough to go on a planned trip to Scotland in October to see grandson, son and daughter-in-law.
Buddhists talk a lot about impermanence. All of existence will change and is always changing. Suffering is not just pain. Suffering is clinging or attachment to things that will change and will cause us pain. None of us can avoid pain. We can avoid suffering by not clinging to the conditions of existence that will/must go away. My body is teaching impermanence. Aging is an obvious instance of impermanence. Can I minimize the mental/emotional suffering of this? Maybe I will be able to tell you in the future.
Namaste (I bow to the divine in you),
I have gotten my blood test markers back for this quarter. Seratonin, chromogranin A and gastrin are all very low. In fact chromogranin A and seratonin are below the normal range! A few months ago, a PA in oncology told me that he had never seen them this low in a patient! These markers are tests to see if the disease is progressing/changing. When I was first diagnosed, seratonin was 7 times higher than it should be. Chromogranin A was 3 times too high. Gastrin was 50% too high.
The numbers have been low since 14 months ago when half my liver with a 6.3 cm tumor was removed. Before the surgery the numbers were in the high-normal and sometimes high range and I was feeling ill. Obviously the tumor was generating a lot of crap into my blood stream! I felt better than I had felt in years just a day after the 5.5 hour surgery. I still feel great although the diarrhea happens occasionally, usually triggered by some food or activity.
The next thing will be a CT scan which is scheduled every 6 months.
In the meantime, I continue to feel well. Night sweats and evening chills occur a few times a month as the monthly injections wear off. The symptomatic diarrhea happens a few times a month, probably triggered by something I eat or do. I can live with that!
I am fishing a bit more this year. Meditating, going to AA meetings, Working on music and youtube tutorials. Laurie and I have been to Mesa Verde to see the cliff dwellings again. All good stuff. I did not know how bad I felt, how depressed, until after the surgery.
May we all have the best possible outcomes,
Part of having a chronic disease like carcinoid tumor is trying to concentrate on the other stuff in your life. The Carcinoid Cancer Foundation shared this article “The Spoon Theory” on how one lives with a chronic disease. It is very true. It may be the perfect response to “But you look so well!” By the way, I don’t mind being told that, I like at least looking better than I might feel, but that’s just me. Many others with carcinoid don’t like it much.
Part of my life since retiring and therapy since diagnosis is electronic music. Listening to it (as well as most other music) and making it. Making music is something I always wanted to do and now I do it.
My latest project has been to produce a tutorial for youtube on how to produce a sound called a “growl bass”. This is used mainly by Electronic Dance Music (EDM) producers. I tend to mix genres and wanted to use it in a different kind of music. There are actually a surprising number of tutorials on youtube on this subject! But, none of them address the DAW software that I use, Reaper and they all use expensive synthesizer software whereas I use free download synthesizers.
So, I watch a number of tutorials and then attempted to reproduce the sound with my tools. It took me a week or more but I got it!
Instead of going ahead with my music, I thought “Wouldn’t it be great to make a tutorial for my fellow software users on how to do this? Surely I’m no the only one who want to do it.” I also thought “How hard could it be?” Famous last words. It took about two weeks. I tried and discarded a couple of screen capture programs before I found one that was acceptable (Apowersoft Free Screen Recorder). I trained myself on Windows Movie Maker. I bought a better microphone and wrote a script and practiced over and over again.
Finally, this morning I uploaded it to youtube. What a relief! But, what a great learning experience. Find it here:
Be where you are; otherwise you will miss your life. ~ Buddha
Namaste (I bow to the divine in you),