Today February 28, 2017 is Rare Disease Day.
Several things have occurred today which warrant examination.
The U.S. Food and Drug Administration (FDA) has approved Xermelo™ (telotristat ethyl) as a first-in-class orally administered tryptophan hydroxylase inhibitor indicated for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy. This is a pill that will help people with the diarrhea part of carcinoid syndrome (some people up to 40 times a day) while those patients are on somatastatin analog therapy (that’s the octreotide (Sandostatin LAR) injection that I get every 28 days or a newer injection called lanreotide (Somatuline)). Big news for those with the syndrome. Fortunately for me, my syndrome is very mild and occurs very infrequently.
saying this “The main objective of Rare Disease Day is to raise awareness among the general population. The Healing NET Foundation encourages you to share this video of stories and comments NET patients posted on our website and on FB, to let the world know about our RARE DISEASE, Neuroendocrine cancer and Carcinoid syndrome. “
The Lifetime TV channel show “The Balancing Act” had a Rare Disease Day episode this morning which partially featured Neuroendocrine Cancer. The show is now on YouTube:
Point 1. above show how raising awareness of our disease gets doctors and drug companies looking for ways to treat it.
Points 2. and 3. are good parts of the ongoing efforts to raise awareness of the disease. It exists. It affects people’s lives. We all need more treatment options.
This log should encourage everyone to get copies of their CT Scans, MRIs, octreoscans, GA68 scans, and all reports on scans and procedures and test results. You will often find things that your doctor doesn’t mention. In the past, when I was with an HMO, my oncologist never went over the radiology reports with me and there were a number of things that I needed to know as well as things she should have known but did not pick up on.
I reported on the positive results of my meeting with Dr. Liu in the post Stability, Carcinoid Cancer 2016-10-27. At the time, we did not have the actual written radiologist’s report. It is worth understanding that with chronic disease like neuroendocrine, we get many scans and radiologists typically compare previous scans to the present scan. In this case, October’s scan was compared to the scan from October last year (2015).
That radiology report about the CT scan came to me in the mail Saturday and I was amazed and very happy to read it!
Neuroendocrine cancer – No lesions found in liver (Dr. Liu and I did find a lesion in our meeting and that had not grown, not sure why the radiologist did not) but the previous report had shown 5 or 6 very small lesions. They have shrunk to invisibility!
Urinary bladder, kidneys, ureters – all normal. This is important because I have struggled with urinary bladder cancer recurring for about three years now.
Everything else – normal! Still no sign of the primary tumor. Wish we knew where that little bugger is!
This is HUGE!!! From six visible lesions to one is unexpected, the monthly Sandostatin LAR injections (and of course my good living, Hah!) must be effective. Of course caution is in order, this is a radiologist that has never seen my scans before. Also, even lesions too small to see can start to grow again, in fact, it is said that the primary tumor generates microtumors that seed everywhere else.
But this is an even better CT scan report than I thought at the time of meeting with Dr. Liu. I am certainly really happy and ready to go forward with hope.
All of you who have our disease: Get copies of your scans and reports about scans and test results. At least try to read them. It will teach you things and may have good news.
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.
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.
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!
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.
Today is the fifth anniversary of my diagnosis with carcinoid cancer (neuroendocrine cancer). Like almost everyone, I had never heard of it before. But, it was the word cancer and it was terrifying. The doctor who called me said “The biopsy says carcinoid tumor and I don’t even know what that is, but it’s cancer. We have scheduled you to see an oncologist.” It’s really terrifying to know a doctor knows the name of your disease but does not know what it is!
Being a geek, I scoured the internet for information. In my experience, doctors don’t give you much information unless you ask questions. You can’t ask questions with no information, so you get very little information from your doctors. I found a study from 2006 that said carcinoid tumor with distant metastasis (liver in my case) had a 45% chance of 5 year survival. That was scary.
But, I made it! Five years today.
Now of course, I know that 10 years ago, the injections that I get every month were not used as much and surgery was not recommended as much. Survival rates are getting better. One reason that I am not at least very sick now is that I heard three experts speak at a meeting more than three years ago and they recommended surgery if possible. My doctors wanted nothing to do with surgery. I had to get a second opinion and fight for it but I got it. I was better immediately and I still feel better than I did before the surgery, three years later. I do not suffer many symptoms nor very often. I am weaker and get very tired more often but I’m older also (I’m told). My heart symptoms may have been caused or exaggerated by the disease or the medication for the disease but it seems under control for now.
That study I found also stated that the average age of carcinoid diagnosis was 64 years old. I got the diagnosis one day before my 64th birthday! Funny huh? Not so much.
It’s good to be able to report something good now and then.
A few weeks ago in Bladder Cancer, Spring Fishing, I reported about my procedure for my second cancer. At the time, things were good. Shortly after that blog post, I discovered that I had a severe UTI (urinary tract infection). I suspect that it was contracted in the hospital, but cannot know that. Now four weeks since the bladder cancer procedure, I may be recovered from that or maybe I am almost recovered from that infection. The doctor is testing to find out.
My NETs specialist has tentatively scheduled May 20 to do a lump removal from my breast to biopsy and make sure that the lump is either benign or carcinoid (which is not dangerous in the breast. Hopefully I do not also have breast cancer.
Two days after that procedure Laurie and I are scheduled to go visit Scotland (our son and family) and then Iceland for a few days.
Tomorrow (my birthday), I am co-chair of the Colorado Carcinoid Cancer Support Group meeting. Dr. Liu, our well-known specialist, is planning to come to the meeting so it should be even more interesting than usual.
Despite the cancer procedure last week, I decided to go on my annual spring fishing trip with friends. We have been doing this more than 25 years. Can’t let a little cancer get in the way of tradition!
The weather was beautiful here in Colorado on the Arkansas River. The rental house that my buddy found in Salida was great. We found the fishing to be tough, but we all caught fish. My fish count was the worst. That happens sometimes even to me and I had the excuse of recovering from bladder cancer surgery.
I had to go to the rental and sleep in the afternoon on the first and third day of the trip. My body was weaker from the recovery and my carcinoid was acting up a bit, I think from the general anesthesia the week before and from the pain pills. Although the bladder cancer procedure pain was not very bad by the time of the trip, my back pain has also been acting up lately and unfortunately I had a bit of a problem with climbing the steep banks of the Arkansas on the first day of fishing and I had to stick to easier access points for the rest of the trip.
My urinary surgeon called to tell me the biopsy results from the surgery. He said that the cancer was non-invasive including a “black spot” he had worried about and that the good biopsy meant he would not have to remove my bladder! I previously knew nothing of a “black spot” or the possibility of bladder removal. I think they just don’t remember what they have told us or not. At least the prognosis is good.
We agreed that I would go through the BCG immunology treatment that I discussed in my previous blog. However, that cannot start until Laurie and I return from our Scotland/Iceland trip in late May.
The first three days in the mountains were mostly sunny with temperature near 70 degrees F. The last morning we fished with temperatures in the high 50s. In the afternoon, we drove through a snow storm to get home to Denver. Today, the next day, the snow storm is here in Denver and we are expecting about 14 inches of snow. Colorado is an amazing place! I feel lucky to be living here.
Today, Friday April 8, 2016, I had a day surgery to scrape urinary bladder cancer out of my bladder and to place some chemo into the bladder. The chemo was an attempt to keep the cancer from recurring. This was the third time that the scraping procedure has been performed and at least the second time that chemo has been applied. I was released from the hospital a few hours after the procedure which took about an hour. There will be a biopsy of the material removed from me and my surgeon will let me know of the report. In the previous treatments, I was told that the lesions were “normal” bladder cancer, not carcinoid and that bladder cancer is most usually related to smoking. The procedure was deemed successful enough that I can go on a four day fly fishing trip in the Colorado mountains on Tuesday the 12th.
The surgeon and I will meet soon and decide whether to commit to a treatment called BCG. This is a type of immunotherapy drug used to prevent tuberculosis (TB), but it’s also an effective treatment for some non-invasive bladder cancers. It’s given directly into the bladder. It’s supposed to prevent bladder cancer from recurring and from becoming invasive. My surgeon says that the treatment lasts about three hours total and is performed once a week for eight weeks and then periodically monthly or quarterly. I don’t yet have the full schedule that he proposes. The drug is actually composed of dead tuberculosis cells and there is a small chance of contracting tuberculosis. My brother has had this treatment and it is apparently working for him.
What is the relationship to Neuroendocrine Cancer?
I had general anesthesia and I DID NOT have a carcinoid crisis and DID NOT have to stay the night in an ICU! Whoopee!!! For those of you unfamiliar with Carcinoid Crisis, you can read these:
I have found over the five years since my diagnosis that I must always make sure that the surgeon and the anesthesiologist be well informed about NETs and carcinoid crisis and that they are prepared to take steps to avoid it or stop it.
The Doctors and Staff
Because I have changed insurance, this procedure was performed in a whole new environment for me. Different surgeon, anesthesiologist, nurses and even hospital. I did my usual song and dance about the neuroendocrine cancer to the surgeon two months before the procedure and then reminded him a week before the procedure. When the hospital called me for pre-operative arrangements, I did the song and dance again. In all those songs I emphasized that the anesthesiologist had to be selected and notified in advance of these concerns. (Hospitals often select anesthesiologists the day they are needed. Don’t let that happen!)
The surgeon was very supportive from the beginning and accepted a booklet for doctors about NETs. The anesthesiologist called me at 8:00 pm the day before the surgery and we discussed my medical history. We also talked about the facts that anesthesiologists are taught about carcinoid crisis in school but may never see a NETs patient in their career. He thought that he had seen one but wasn’t sure. Both doctors expressed thanks that I had the knowledge and the willingness to insist on refreshing their knowledge of the subject. The nurses also seemed to have refreshed their knowledge on the subject.
All in, this was a very positive experience (given that it was a cancer procedure!)
This is tremendous exposure for me and I am now trying to return the favor by posting a music video of my piece “Carcinoid”. This music was composed in 2011 about 3 months after I was diagnosed with carcinoid cancer, during the time that I was quite ill from a treatment called chemoembolization or TACE (transarterial chemoembolization). That treatment was supposed to be outpatient but I went into Carcinoid Crisis and spent the night in the Intensive Care Unit! I was told that there would be “flu-like” symptoms for 3 weeks but mine lasted 4 weeks and for a week there was a fair amount of pain in my liver. After the illness my symptoms from the cancer disappeared and my liver tumor shrank. Unfortunately, after six months, the tumors grew back and the symptoms came back actually worse than ever.
The music is an echo of my emotional and physical illness from the cancer diagnosis and the treatment.
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.
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.
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,