Tomorrow, Thursday, November 10, is Neuroendocrine Cancer Awareness Day.
Yes, I am a zebra. I have neuroendocrine cancer.
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
Unfortunately, many doctors forget that us zebras actually do exist. The average time to diagnosis for us is about six years!
Keep reading, there are lovely baby pictures below!
My specialist Dr. Liu and I were concerned that perhaps my thyroid function was not good. Since Sandostatin injections can impact that and also ten years ago a nodule was noticed on my thyroid and not really followed up since then, I had an ultrasound last week and the “nodule” was still there. That worried me a lot.
There was also the possibility that my Carcinoid disease was progressing which is always a worry for those of us with the disease. I have been having more episodes of chills in the evening and occasionally night sweats.
Dr. Liu believes the “nodule” is cancer but has not changed significantly in ten years and the test for thyroid function are good. His recommendation is to revisit it in six months. He told me that conventional wisdom is usually to remove the thyroid but that he doesn’t agree when it is this slow growing. I am good with that. The less surgery, the better.
With blood tests and with a CT scan, there is no indication that the carcinoid has progressed. The small tumors in my liver have not changed and blood tests give no indications of change.
Obviously, I am overjoyed. It has been 3.5 years since my liver surgery and the carcinoid has been pretty stable.
Other good news is that the new GA-68 scanner will be used for patients starting next week! I will probably get it in the spring to insure that carcinoid tumors have not spread to any other areas of my body.
My back is still a painful problem. I have degenerative disk, arthritis and DISH (Diffuse idiopathic skeletal hyperostosis – tendons hardening to calcium). I have tried a chiropractor and it’s no help. Hopefully today’s CT scan will give my PCP some clues. I have been attending hot yoga classes for the last eight weeks and that gives me some relief for a day or so, but the pain can still be pretty bad. I think we will be looking at injections in the spine soon.
No news about solutions to the urinary bladder cancer problem as of yet.
I had another day surgery today for urinary bladder cancer and just returned home. For the fourth time, cancer had to be scraped from the inside of my urinary bladder. After the tumor was removed a type of chemo (mitomycin C) was left in my bladder. Although the procedure itself was about an hour long, Laurie and I spent from 9:30am until about 4:00pm in the hospital. I have to wear a Foley catheter for two days and then remove it.
The original anesthesiologist assigned to me was delayed in another surgery, I was assigned another one. He decided to use the same procedures that were used during this procedure in April. He thanked me for giving him a chance to study a disease he had only heard of in school but never seen (neuroendocrine cancer). I made sure that the octreotide was there and ready when I was wheeled to the operation room. In fact, we had to wait for the pharmacy to deliver it, even though the originally assigned anesthesiologist had ordered it. The doctor told me that the pharmacist had to look up recommendations and dosages because they had not used it before. At the pre-operation meeting a week ago, I had given the doctors copies of Dr. Woltering’s protocol, Dr. O’dorisio’s protocol and Dr. Pommier’s protocol.
In any case, all went well.
The larger problem is that this bladder cancer has recurred several times now. This summer, I was given the BCG immunology treatment for six weeks. That is supposed to be 70% effective in preventing bladder cancer recurrence. Obviously, it did not work. My doctor is searching for other solutions. He says that there is some evidence (that means not proven with acceptable studies) that interferon added to the BCG can help. He is unsure of it and also insurance would probably not cover it. I will probably re-do the BCG treatment in any case. My doctor has also checked for any drug studies that I could enroll in. So far, three studies have turned me down because I also have neuroendocrine cancer.
We will have to keep searching. I really do not want to have this procedure every six months until my bladder walls are so thin they have to remove my bladder.
A. I have been seeing a chiropractor for five weeks now, twice a week because I have severe back pain. Two problems plague me:
Degenerative Disk Disease Basically, damaged or worn out disks between the vertabrae. I am the oldest of 12 children and at least 4 of us have this problem.
Diffuse idiopathic skeletal hyperostosis (DISH) Essentially the tendons in the spine start turning to bone. This and the degenerative disks above were first seen because I have so many full body CT scans and a bone scan checking my neuroendocrine cancer. They do not know the causes and there is no cure. It is not uncommon but usually found in very old patients. Darn it! I am not that old yet. Lucky me.
So far the chiropractic treatment has managed to move the pain around but not reduce it much although I do have a few good days which is good. My PCP also prescribed a treatment of prednisone for me. The drug got rid of sudden shooting pains I had, but the rest was not changed.
I have also been trying hot yoga for it, for stretching and increasing flexibility. After an hour of that, I am usually more comfortable for 12 to 36 hours. I’ll keep that up.
B. Next week, I get to see my NETs specialist, Dr. Eric Liu. We’ll decide on my next scans, blood tests, etc. And, I will talk about a little bit of increase in symptoms. Which would be more frequent pain in abdomen, more frequent diarrhea, more fatigue. Of course, I’ll get my monthly Sandostatin injection (or jab as the British say which is appropriate for this.)
C. Finally the good stuff. We love, love, love our new little granddaughter Margot. She is very different from our grandsons. All is well, very healthy with her and her mom.
On Monday August 22, I became a grandfather for the third time. This time the child was a girl. We are very excited and ready to spoil this girl to pieces like any good grandparent.
Mom and baby are well. They will probably be sent home Thursday. Much joy!
The pictures are by Dad Matt and Grandmom Debbie.
Not so good.
I saw my urinary surgeon this morning and the bladder cancer. The cancer has recurred in only 4 months and while I was undergoing the BCG immunology treatment! My doctor calls it a nuisance cancer., not life threatening if treated. But, it means that I have to train yet another anesthesiologist on the protocols for anesthesia with a NETs patient. (I almost died with carcinoid crisis under anesthesia five years ago and I don’t want to repeat that.)
The cancer has to be removed again (4th time). My surgeon is looking for alternatives or add-ons to the BCG treatment. He is also looking for promising studies that I could join.
It may be nerves or some other physical issues but I have had the feeling that my NETs may be progressing a bit. A small increase in abdominal problems and pains is noticeable. I should see my specialist next month.
Life works this way. Never all good, not really all bad.
Last month, in BCG Immunology Treatment Started, I posted about the BCG Immunology treatment that I was undergoing for urinary bladder cancer. Ten days ago it was finished for now. Although the side effects were minimal compared to other things that I have undergone, it was great to be done with it.
I have an appointment for a cystoscopy in about six weeks. They put a camera in your bladder to look at it! Not pleasant, but it will show whether there are any signs of the cancer. I am told that I may have to have another three weeks of treatment in about three months.
In my post May 2016 Scotland and Iceland, I mentioned that I was having a great deal of trouble with sciatica. This is because I have what is known as “degenerative disk disease” in my lower back. The sciatica pain is caused by the vertibrae pinching the sciatic nerve and inflaming it. There has been pain and tightness in my back, both sides gluteous, hamstring and calves. It can be difficult to walk, stand and negotiate stairs. I had a real fear of falling sometimes.
Three and a half years ago, I had a milder version of this. My PCP put me on a three week treatment taking Prednisone tablets. It worked well and lasted for over two years.
I suggested this to my current doctor and he agreed. However, my urinary surgeon said that it would interfere with the imunology treatment. So, with doctor’s instructions, I have been taking far too much ibuprofen and it has started causing stomach issues.
I started taking the Prednisone three days ago! Hoorah! It’s working well. My back and legs are better than they have been in three months and getting better. Hopefully, the improvement will last a long while.
There are lots of cautions and problems with Prednisone. Be careful.
For almost everyone it should only be taken for a few weeks including a taper off. I have five days two tablets; five days one tablet; five days half tablet; five days quarter tablet; for a total of twenty days.
Neuroendocrine Cancer News
I feel lucky to report that I am having almost no problems associated with neuroendocrine cancer at this time.
First, they publish a very good information pamphlet for medical professionals. When you realize that your doctor knows little or nothing or wrong things about your NETs, see if they will read it: NET Primer: Informational Brochure . It’s also pretty readable for us patients.
Today, I finished a small Youtube tutorial on how to make a laser noise in your Digital Audio Workshop (DAW). This type of sound effect is used in many electronic dance music and techno music creations.
I used the Reaper DAW and the TX15Wx sampler plugin and a simple sine wave. The TX15Wx is a nice, free VST plugin. It has plenty of good features. Samplers are used to simulate real instruments by adding samples of the instrument to the plugin. In my case, I am making a noise that I want with it.
As Dr. Liu predicted, it is not cancer! It is just an angiolipoma. That means a benigntumorcomposedchiefly of fatcellsandcontaining an unusuallylargenumber of blood vessels. Don’t let the word “tumor” trouble you. It’s benign; not breast cancer and not neuroendocrine cancer. Dr. Liu says that I just a lumpy, bumpy guy.
BCG Immunology treatment started
Friday, I had the first of six BCG treatments to try to prevent the bladder cancer from recurring. BCG is an immunotherapy which means a treatment which will strengthen the patient’s immune system against the disease. I have read that this therapy can get rid of bladder cancer in 70% of the cases. It hopefully will keep it from recurring.
The treatment for me is to be done every Friday for six weeks. After that, there will probably be treatments every Friday for three weeks on a quarterly basis for a few quarters.
So what is it? BCG is a live, weakened form of tuberculosis in a saline solution. 50cc of this solution is placed into the urinary bladder via a catheter. I am then sent home with the instruction to hold it for one to two hours. (Not that easy for me!) I have to thoroughly clean myself after each urination and neutralize the toilet with bleach for the first 6 hours. Possible side effects are infection, pain, flu-like symptoms such as fever and feelings of discomfort and tiredness. These may show up or increase with each weekly treatment. Of course there is a long list of other possible side effects which are less likely, including BCG (tuberculosis) infection. You can imagine the shock of seeing the nurse who will do the treatment showing up in a hazmat suit!
Having had the first treatment, I can attest to some pain the first couple of days and tiredness and also fever two nights in the middle of the night. It also seemed to trigger my carcinoid diarrhea this whole time.
Here’s hoping that it works and that the side effects don’t get much worse!
Thursday we returned from a trip to see our son, daughter-in-law and grandson in Scotland and to do a quick tour of Iceland.
The weather wasn’t the greatest and I was constantly bothered by sciatica meaning that I could not walk or stand much. However, it was a great pleasure to spend a week with the family, especially the three year old grandson.
He’s great fun! The photo is by his mother, Kat.
Derek and his family live in a house on the sea wall of an old fishing village called Cellardyke, overlooking the North Sea. Very picturesque.
After a week with them, we flew to Iceland. It’s easy to stop over there on the way back to Denver. My wife, Laurie, had found a nice hotel in the Reykjavik town center. Even with my sciatica I could walk to see the sights and eat without much problem.
We took a tour bus one day and saw a geyser at the Geysir Park and Gullfoss (golden falls) waterfall which is beautiful and powerful.
We also toured a greenhouse which grows vegetables getting heat and power from geothermal heat. We visited a site where the North American Tectonic Plate rubs against the European/Asian Tectonic Plate. There were very visible rifts and cliffs in the lava there.
It also contained the spot of the Icelandic Parliament which was the earliest European parliament.
It was sunny the day we got there. Overcast Reykjavik the next two days. Because Iceland is so far North, it was never totally dark at night time. You can see from the pictures that it was rainy and foggy on our tour.
I’m glad we did the stop at Iceland and, of course, to visit Scotland and family there. Hope that my health continues to allow me to travel.
Neuroendocrine cells are located throughout the body. Neuroendocrine cancer could be found anywhere in the body. Through the support groups, I know people who have it in their knees, elbows, bones, intestines, ovaries, liver, mesentery, lung, pancreas, under the skin, etc. So, when I found a lump in my left breast (wasn’t checking, just washing), I immediately went to the doctor.
This was before Christmas. We agreed that it should be removed and biopsied, because although NETS in a breast is not dangerous, it could be the better known and more dangerous breast cancer. Because I was changing insurance, I had to wait until I had new doctors lined up to get this done.
Dr. Liu did it. It was a simple day surgery without anesthesia, just an injected anesthetic. I was allowed to drive myself home.
The news is: It is a lipoma (capsule of fat). The doctor will have it biopsied but it is almost certainly a benign lipoma. This is great news! I can go on a trip to Scotland and Iceland next week with a light heart.
When we return from Iceland, the immunology treatment (BCG) for my bladder cancer starts immediately. It will be once a week for six weeks and after that maybe once a quarter for three weeks. It is not chemo and should not be that challenging. I will report on the experience. Someone in the Colorado Carcinoid Cancer Support Group suggested that the treatment might have some good effect on my primary cancer (the neuroendocrine cancer). I will watch and report on that as well.
I certainly hope to be at the end of cancer adventures for this year.