Hi! My name is Cy Ball. I am a retired computer software developer. I am an enthusiastic fly fisherman and music producer. This is my blog.
I have a wonderful family that I am very proud of: my beautiful and supportive wife Laurie, my son Derek and his wife Kat and their son Ansel, my daughter Erin and her husband Matt and their son Charlie.
Since retiring, I spend time composing music on my computer, working out in the weight room of a local rec center, fishing, walking, reading. Biking had been part of my retirement plan, but with the cancer and also some heart issues, I bike very little and must generally stick to the flatter and more boring rides.
I retired in June 2010. In May 2011, I was diagnosed with an unusual cancer called “carcinoid tumor”. There is a primary tumor somewhere in my gut (not located yet) and six metastatic tumors in my liver. I have had a treatment called chemoembolization which stopped the tumor activity in my liver until January 2012. In June 2013, half my liver was removed with a large tumor in it and my gall bladder was removed. For more on the cancer adventure go here: Carcinoid Cancer – My Story
I intend my blog to center around music, with some talk of carcinoid tumor.
Enjoy!
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Hang on there Cy! Your going 9 years strong. I’m almost 14 years with renal carcinoid! Question everything that is offered and do what’s right for you!
Stay well,
Bright.
Thanks! When I was diagnosed statistics indicated that I had less than 5 years.
Glad to be able to beat that.
Thank you so much for sharing your story, Cy. Now I feel a little less like I am wandering in the wilderness. My 59 year old sister has been diagnosed with carcinoid tumor. She has been in intensive care for 3 weeks. They had to remove her colon – now has ileostomy. Original cancer was removed with her appendix. Cancer is in her liver. I feel like if she makes it through this original surgery she will have a chance. She is so weak – she can’t even sit up by herself. I am glad to have you and the other folks here as a touchstone. Thank you for sharing – your words are a gift to me.
In 2011, the year that I was diagnosed, it was a great relief to find a support group where I could listen to their stories and gain knowledge of this disease. Thanks for the comment and may you and your sister have the best possible outcome.
Thanks for your reply. It us interesting how health care varies country to country. It has not been approved in Australia either. But a group of people are working hard to raise funds to gain approval. I am lucky to have had 6 treatments administered through a pic line and it targets the tumours all in my liver. there was no cost to me our medical care in Australia is excellent. I am a member of the Unicorn Foundation who have a facebook page who are working tirelessly to raise funds for Lutate to be available for all carcinoid patients. I was in hospital for 8 weeks not expected to leave Lutate and chemo embolisation saved me and gave me back a life style I am currently stable and only 4 weekly sandostatin injections it even shrunk 2 tumours and recent scans show no more tumours and no increase in size. I say lovely lutate saved me. Hopefully one day it will be available for everyone. Lynnette
I have just read your story. So many parts of your journey are similiar to mine. Have you had Lutate I have had 6 saved my life. I wish I could record my journey as you have it is excellent to read. Lynnette
Hi Lynnette,
As best I can tell, Lutate is not approved in the United States. I did not even know that name. You know better than I, but it appears to be associated with Peptide Receptor Radionuclide Therapy (PRRT) which is also not approved in the United States (it is being tested but may not be approved for several years). People who want it have to go to Europe to get it and it is generally not paid for by health insurance. I know people who have done this and gone years past their doctor’s predicted life span. Because of the expense, people in the U.S. often only do it as a last resort.
It’s so sad since it’s been available in Europe for over 15 years. Has it been available in Australia long?
I appreciate your comments and wish you well on this journey.
Namaste,
Cy
hi. Do you have an email? Sound slike what my wife is starting to get diagnosed with and had some questions. Hope you are doing well. She had liver biopsy as a standard during stomach surgery and they said it showed neuroendocrine tumor cells. Full CT scan showed no masses, she goes for full 1.5 day cancer scan this week. Her doctors are saying its tricky because they see no masses so not sure what to do. They said ” do we do chemo just in case, or wait and see, etc… its hard to figure out on this etc…:
Al
Al,
I prefer not to share my email.
If your wife had a liver biopsy during surgery, they must have seen something. Normally a biopsy is done of a cyst or tumor or other mass. In my case, they drained some fluid from a large lesion and biopsied the fluid originally. What the biopsy showed was the same as your wife. Neuroendocrine tumor cells.
Sometimes lesions or tumors are too small to see on a CT scan or they may be hidden, difficult to see.
I am assuming that the 1.5 day scan is an octreoscan or GA-68 scan. With luck these may pinpoint areas of concern.
I would find out what kind of chemo is proposed and where. Is it in the stomach or the liver or both?
For me it was a procedure called chemoembolization or TACE. In that, a catheter is run up a vein into the liver and beads with a chemo agent are released into the liver. The beads block blood from moving through the vein and the chemo attacks the tumors.
With neuroendocrine cancer doctors often want to wait and see. This is because it is slow growing. If there are no symptoms, it can be OK to wait for visible tumors. However, most experts recommend locating the tumors and performing surgery to remove them.
If your wife has symptoms of carcinoid syndrome: diarrhea, flushing (turning very red), wheezing, fluctuating blood pressure, these can be controlled with a monthly injection of a drug called Sandostatin LAR.
If tumors are not located, I would be surprised if a doctor would do chemotherapy or surgery of any sort.
May you have the best possible outcome,
Cy
Subject: In need of guidance/help. Seeking best correct Options
and More Options///Insurance/Dedicated Specialized Carcinoid Colorado
Physcians/Teams/–
In a difficult Atypical Unique situation within 90 days
Could you please help a fellow Colorado person
May 27, 2014
I’m not sure if you will get this but I’m in a somewhat difficult and unique situation.
///I’m a 64 yr old 1 yr+ retired female undergoing testing for carcinoid cancer
( lab-US-CT–Chest X-Ray-24 hr urine–colonoscopy next week)
///symptomatic: “Currently” insured with my past employer Kaiser
COBRA HMO Kaiser Permanente
18 mo COBRA (Initiated 3/1/12-“Coverage Will end”
in 14 wks Aug 31, 2014)
///. I am in need of individual private insurance for 6 mo
Sept 1,2014 through- Feb 28, 2015).
March 1, 2015 eligible for Medicare
Not eligible for Medicaid or subsidy with AHA
//// Is it crazy to think after doing all I can until 8/31/14. I could
possibly delay medical/treatment/ etc for the next 6 mo until
Medicare begins???
/// My inquiry is to ask and learn who-what-where -type
INSURANCE COMPANY and TEAMS (Colorado) I should
use/choosefor medical care for the 6 mo of independent
private insurance and then Supplemental with MEDICARE
in regard to living (and I do mean to treat and live this disease)
this life long trial of Carcinoid Cancer….??? UCHS BEST???
///. I’m not entirely ignorant of the Cancer trials and tribulations journey
My wonderful Husband passed away 2/2008 from Cancer but
he had great employee insurance (note::over two yrs
his medical expenses were over $2 million)and I realize
this might turn into a nightmare
Your time is appreciated…I promise not to contact you but
this is too important and I feel you could help me with
valuable and needed information
Thank you in advance. Your advocacy is commendable
NLV
Ms Nancy, I am sorry that you are suffering this disease.
1. Yes I believe that UCHS is best. For treatment of carcinoid. My second opinion was delivered there. They seem to follow all of the experts opinions that I have seen.
2. For insurance, UCHS will help you find insurance that will cover their services.
3. If you wanted to do it, Kaiser guarantees that they will continue to cover current clients but you have to reapply and the premiums will be pretty high until Medicare kicks in. I know this because I had exactly the same situation and had to pay over $1200 per month for 4 months until I got Medicare. Kaiser then let me use them as the medicare supplemental insurance which is inexpensive. All of this was before the Affordable Care Act kicked in, so it may be different now. If you use Kaiser you must fight them for the best treatment for our rare disease sometimes. I have managed to get what I need though.
4. Speaking of the ACA. Have you checked with Colorado’s insurance exchange? I am told that they have people who might be able to help with your problem. You could tell them that you need to use University of Colorado Hospital Cancer Center for instance.
5. If your diagnosis is carcinoid (Kaiser has done a good job of testing me once they thought that I had carcinoid tumor) and the doctors think it is “well differentiated”, then it is slow growing and you should be able to wait until you get medicare for treatment unless your symptoms are bad. However you might not need to if you work points 2 and 4 above.
May you have the best possible outcome,
Cy
A fantastic read and I will look forward to the updates.
I also have neuroendocrine cancer that originated in the pancreas 5 years ago. I just started on Sandostatin 30mg LAR for metastatic liver cancer. I have enjoyed your blog.
I came upon it quite by accident.
Hello again, Cy, I apparently have numerous cysts on my liver and some other organs and I am going to tell my gastroenterologist to be aggressive in determining whether this could be carcinoid syndrome, my Chromogranin A was low but I have been having worsening right sided abdominal pain.
Tony
May 2011 must have been a big month for carcinoid! That is when I was diagnosed also…had surgery to removed ten inches of small intesting after removing seven tumors. Suppedly, all primaries. From here on, who knows. It seemms this disease is like a big black hole with so many opinions and so many different experiences, it is hard to get a handle on what it all means. Some have mets, some don’t. Some have carcinoid syndrome, some don’t.
sorry you are now on this journey too….may music lift your spirits along the way. all the best, Linda in Toronto, Canada
Thanks Linda, may your journey be the best possible.
Hi Cy, I admire you for your positive way of dealing with this mysterious cancer. Music is healing for the soul and body. Keeping active, and enjoying each day, with your loved ones too. I am close to all this, as my husband had carcinoid cancer. Very illusive, and hard to diagnose. Thank you for getting the word out, and sharing your experiences. Much success to you in all you do, and hoping for great results in all your treatments.
God Bless,
Carol Webb
Ha!
I replied earlier on your story . . . THEN I go and peruse the menu and see you are into music . . .
I’m a sign painter by trade, but play bass and guitar and have written a few pretty good songs – at least, they are often requested when we have our little jam sessions.
I do not play professionally anywhere, never had a desire to persue or be in that particular world … I played bass and guitar regularly in church for 26 years – consumed a lot of time at practices and so forth.
Now, we just get together – 5 to 8 guitar pickers (a some a dozen)
ocassionaly a banjo, harmonica, keyboard arrives. We sit around and play old folk music Seger, Dylan, etc., some old rock tunes –
Other stuff – two kinds of songs some people love, country AND western . . .lol, as well as very old hymns . . .
A good time is had by all and sometimes we have good with the event. : )
I pray cancer be non-existent in you.
I would also like to direct you to a site called The Truth About Cancer, and read the story about a guy named Ty Bollinger, who is working ceaselessly to get information about cancer out there.
Thanx for the opportunity to share here.
PS
Sorry for the typos – hard to type from small mobile phone …
Corrections:
Guitars pickers are a SOME a dozen
Sometimes we have FOOD at our guitar events.
: )
ACK!!
It messed up again!
Final correction:
GUITAR PICKERS ARE A DIME A DOZEN.
it’s not funny anymore after you have to keep correctin’ it . . .
Hi I have been suffering from carcinoid syndrome an tumors since 2008 when I had the whipple surgery done. My first tumor was on the head on the pancreas an it was the size of an egg. Three months later they found three more on my liver. I get 30 mg do Sandostatin monthly ever since. But I also have gastrophopresis an IBS which causes me to be hospitalized a lot. An for the last year an half my immune system is compromised my IGG is 171 an it should be over 600. Which means I can’t fight any infections so I have to be very careful. So I get infusions 2 times a wk which I am allergic to so I have to take many drugs before hand. So I am very weak all time my fatigue is terrible an no one has any answers for me on what is causing it or how to correct it. There are days I can’t even make it threw the grocery store. So you can guess I can’t work either an suffer from migraines the last year which I ve never had before. I know this is a lot of info. An thank you so much for listening. If a anyone knows anything or has any suggestions please let me know.