Results, reflections and what it all means

A few weeks ago, I wrote about my experience with the gallium scan at Stanford and the procedure I had done. What I did not write about were the results and what it means for my future.

They were not able to use any samples from the biopsies taken from my pancreas. Apparently that is common because the needle they had to use is so small and the area was so hard to get to. There were just not enough cells in the sample. They will have to try again in 6 months to a year to be able to biopsy again. The main reason I have to wait so long to have the procedure again is my Dr. is afraid I am not strong enough at this point. The pros do not out weigh the cons. He feels I would end up in hospital for several weeks after and my health would decline.

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What they did find was I do have several small tumors (too small to biopsy at this time) as well as moderate chronic pancreatitis. Now I get to drastically alter my diet for both issues. If I don’t alter my diet I will end up very sick and not able to eat at all. I would then be hospitalized and be put back on TPN or be tube fed. Changing my diet should mean less time in the hospital. I still have and will have lots of pain when I eat and I do have to take pain medicine, but as long as I stick to the diet I am much better.

The diet I have to follow is not fun and I no longer get to eat out. I had to cut out all dairy, sugar, gluten, soy, and nuts of any kind or in any form. Had to cut out as much fat as I can (no fried food) no red meat, pork, chicken & most turkey. I can have some fish, but no shellfish because I am allergic. I can’t have tropical fruit, citrus, tomatoes, avocados and anything in the cabbage family. Also have to be carful with beans and all vegies have to be cooked well. I can have a few eggs here and there. I also have to be carful with potatoes (no skin on them) and minimize how much white rice I have (brown is preferable).

Seems pretty restrictive huh LOL… Well it is, but I am learning to work with it. When I explain to people how I eat just to simplify it I say that I eat a vegan, GF diet with no nuts. It is more complicated than that, but people seem to be able to grasp and accept that a little better.

The other thing my GI specialist told me no more over the counter pain medicine. He said it will aggravate my condition and he wants to know exactly what I am taking at all times. He went as far as to put in my chart allergies to ibuprofen and Tylenol products. Just so no other Dr. would order them for me if I were hospitalized.

He also put me back on octreotide injections to help control the Carcinoid Syndrome symptoms. This has helped greatly. It has made it so I am able to get back to doing some of the things I use to. Things like cleaning house and playing with my youngest daughter. It has made it so I am not as sick all the time.

I am grateful for this even if it s just a few days out of the week. I am not as well as I have been in the past. He explained to me that this is chronic and progressive. It is something I just have to accept. I should enjoy the good days and rest on the bad days. I should not dwell on how awful this disease is and how it is robbing my health and me of time.

So my focus now is one getting stronger and make every day count. We do struggle with bills and trying to make ends meet. That’s the other thing being terminal and in and out of hospital is expensive and well bills pile up. Pretty sure we will not be taking a vacation anytime soon or ever. I had wanted to be able to see my mom and her family again, but don’t think that’s going to happen. At least we have social media LOL…

Long overdue update with confirmed diagnosis

Things have been so crazy since the first of the year and I feel really bad about not updating my blog. However after you read this you may understand. It really has been crazy. The first week of the year I sent my oldest daughter to BYU Idaho for school. This was very hard for us as she was my help. Also she was PA’s big sister and best friend. This left a huge hole in our life. The first couple months very hard for all of us, but we made it.

After that, I finally got to see a specialist on Jan. 30th at Stanford University Hospital. After looking at all my scans and reading over my extensive medical history, he concluded I do have Carcinoid Syndrome and he felt they needed to find the tumor/s. I was told he was going to try to get me into a new clinical trial they had there at Stanford, which is the Gallium 68 scan.

The Gallium 68 is the newest in diagnostics for NETs cancer. It can detect tumors that are too small for MRI, CT or even Octreotide scans. He said he would call me in a few days to tell me if I qualified. I got that call the next and I got the scan on March 5th. This diagnosis is what I needed to get my own doctors to start treatment again.

The scan was easy. It was done in a PET scanner. Only took about 45 minutes for the actual scan. I did have to wait quite a long time after getting the injection with the isotope. Which made me so very nauseas. A little odd because most do not have any side effects from the isotope its self. After the scan I was free to go. The isotope has no lasting radiation or half-life at all. You can see more information about this trial in the link. http://clinicaltrials.gov/show/NCT01980732

I got the results a week later. There was uptake seen in the head of my pancreas. That is how they see tumors on these scans. I then waited for the tumor board at Stanford to meet and decide what should be done next. They decided I needed an Endoscopic Ultrasound of the pancreas with biopsies taken. I would have this done by my doctors in a few weeks.

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Shortly after that the manager of out apartment complex told us they were letting us out of our lease. We had to move at our earliest convenience. We had only been there 10 months. That apartment had turned into a nightmare. We are actually now in process of bringing charges against them for discrimination and breaking fair housing laws.

We did find a new place and it is a very nice. So much better than the last place. We finally got moved in and settled. I did spend much of the time sick while we were moving and getting settled. We are all happier here. PA is so very happy in her new room. She is looking forward to her birthday next week and for her sissy to get home at the end of the month.

I was very sick during the whole move and shortly after I did finally have the EUS (endoscopic ultrasound) that Stanford wanted me to get. After the procedure I get very sick again lost 25 pound in less than 2 weeks and ended up in the hospital for a week. I have been recovering since. I will write a follow up post about the results of the procedure and what it means to my treatment and my life.

Things have just been so crazy. The good part of moving is our new place is AMAZING! We love it here. PA LOVES it here. She, not once slept through the night in the last place. Here she has slept through the night from the first night.

A Renewed Hope, Just in Time for Christmas

In my last post I left off that….I had just received the letter from my insurance stating they had denied my appeal for the third time. At the same time I got a letter stating that they had to send it out to a third party company that Medicare contracts to for a final decision on the matter.

I was sure it would be denied once again. I had researched this company and they had an 85% rate of siding with the insurance companies. It really did not look good. Not even a week passed (two days before Thanksgiving) and I got a phone call from a lady and it took a couple of minutes before it actually registered in my brain what she was telling me. She felt it was critical I know right away that they had decided in my favor to send me to Stanford.

Like I said it took me a few minutes before it registered in my brain. This was a HUGE win for me. This is what I have been fighting for the past 7 years.

Now begins the process of getting my records there. The past several weeks I have been working with people at Stanford to figure out who will be the best person to see.

I have filled out paperwork to have all my records from all of the facilities I have been seen at, sent to Stanford. This process alone will take my insurance a couple of weeks. I have been seen at both Northern California facilities and Southern California facilities. I was seen at a total of 6 different facilities total. At least they put everything on disk now. If they did paper records still it would be upwards of 4,000 pages or more not including images & films.

I will be following up this next week to see if they have started to get records and to see when I might be able to schedule my first appointment. As of right now I think my insurance thinks they can get away with just once consultation, but I know Stanford is going to want their own labs and maybe even their own scans. I may have to go back and fight my insurance to give me more visits and such. Not sure how that works, but seeing I have come this far I should be able to do this.

I think our biggest hurdles now will be the logistics in getting to and from Stanford. Then add care for our daughter while we make the trips. The drive there and back is 3 hours each way (with no traffic) and with my oldest daughter leaving for college in 2 weeks we are going to need to get a sitter. This is just going to take some serious planning and we are going to have to add extra expenses into our already stretched budget.

Even with the extra expenses, which will be very rough on us as well as the logistics of it all.  This is a huge deal for me. I will finally get the care and treatments that I have been otherwise denied up until now. I will finally get to see doctors who know about Neuroendocrine/Carcinoid Cancer (NETs Cancer). This will not mean a cure for me, as there still is not one at this time. However what it does mean is I will have a higher quality of life and possibly a few more years with my family. That means more than anything right now.

Now I can enjoy Christmas with my family, then send my lovely daughter off to BYU Idaho to school. Thank you for sharing the ups and downs. Hope your family has a wonderful holiday & Merry Christmas…

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When Doctors and Insurance Comp. Take Away Your Cancer Treatments

When Doctors and Insurance Comp. Take Away Your Cancer Treatments…

As I sit here writing this I am left to wonder what am I going to do. About a month ago I went to see another oncologist in hopes of getting a fresh outlook on my care and maybe a chance to convince him I need to see a specialist. Well that went very badly and I documented it in my previous post  Giving up is NOT an Option Feel free to go back and read it to catch up.

Anyway, since that went to badly I filed a complaint with my insurance in hopes of being able to talk to them and show them information as to why I need to be seen by a specialist. See this is not just a want at this point. My insurance does not have doctors with the knowledge or the testing capabilities I needed to properly see what is going on with me.

  • Where did it happen?
  • What was my complaint about?
  • How I do I want it solved?

Well that was harmless enough. Except it only gives you 4,000 characters in each field for each question. I did my best to put all the facts thinking maybe I could fill in the rest with someone later.

WOW was I wrong!!

I got a phone call back a day later from Cynthia. She informed me that she was submitting my complaint to one of their doctors, and he would decide by the following day if I needed to be seen by a specialist. I asked her if I could speak with this “doctor” because there was a lot of information he would need to be able to make that determination. After all, this is a rare cancer and unless you are familiar with my case there is no way he can make an informed decision in less than 24 hours. She told me I could not speak with him or get his name.

At this point my life is in the hands of someone who has never seen me before, and has no prior knowledge of my case. I am seriously wondering how this is even possible…. I can tell you it is not. I got a phone call back late the next morning from the same lady. She tells me that this doctor has denied my request sighting that the insurance company has everything I need and can take care of all of my needs.

In the back of my mind I already knew this was going to happen. I have been denied before. Last time they told me it would not make any difference in my out come so they did not see a need.

I asked this lady what my next step was because I did not agree with this doctor. She told me she could resubmit it to another doctor and get back to me by weekends end.

My husband was the one who took the call. This time was from Eddie. My husband told him I was not available. Eddie proceeded to tell my husband all about the decision. Mind you he did not verify whom he was talking to or if he had my approval to get this information from him. He gave my husband details about my case that were quite sensitive. What this guy did was a breach of HIPPA laws and my husband called him on it. We will be addressing this matter as well.

Anyway, I was turned down a third time now. I am going to have to get a lawyer and go through arbitration at this point. This is not the worst part though.

I called the oncology scheduler to get my next two sandostatin injections set up and was told she could not do this. There was a note from the on call oncologist that said I had to wait until my oncologist came back to discus if I will be getting them at all.  I get these injections every 14 days and have for 4 years now. My oncologist will not return until after the 19th.  This will be several days after I am due for my next injection.

My oncologist has threatened to take way the only medication that keeps my carcinoid syndrome symptoms from making me too sick. However he has never actually done it.  I am terrified that if I cannot get the injections I will be sick and maybe even in hospital by the holidays.

I am not happy about this. The thought of it is honestly making me ill. I don’t know what is going to happen next. I really don’t want to do this. I don’t need the stress or anxiety of a legal battle. I especially don’t want a battle with a huge insurance company.

Giving Up is NOT an Option

I had an appointment the other day with a new oncologist. This is my 6th oncologist in 7 years. I am trying to find an oncologist who will listen to me. Someone who will or can explain their reasoning behind certain decisions. I want an oncologist who will work with all of my other doctors as a team.  I do not think this is too much to ask, and this is one cancer that is best approached by a team of specialists, sharing information and knowledge and conferring with one another.

My current oncologist knocks down suggestions made by my other doctors and gives no real reason. He has become very complacent and has stopped listening to me altogether.  When he thinks I am stable, he wants to pull therapy saying it is no longer needed. Then I find myself having to fight a physician to keep the standard of treatment and maintenance therapy in place for myself. The therapy (my twice a month Sandostatin injections) is the one thing that keeps me able to live a somewhat normal life about 60% of the time. It is the only reason I can leave the house. This random, misguided elimination of my treatment regimen has happened twice now and I don’t feel I should have to fight for something that is standard treatment.

I was hopeful when I left the house yesterday morning. I should have known it was going to be a train wreck when we hit horrendous traffic before we even got to the freeway. I called the clinic and let them know I was going to be late. They said no problem. Deep down I felt I should have canceled, but I did not listen to my inner voice. I found out later my husband also felt the same way, but he didn’t want to say anything. I don’t blame him really. I probably would not have listened.

We got there about fifteen minutes late, got checked in, and everything seemed to be fine. Then the doctor walked in and both my husband and I felt at that point it was not going to be good. The doctor had me go through seven years of what I have been through, which I was not really prepared to do.  Is it too much to ask to have a prospective new specialist physician to have read my charts, events, medical history, and followed my critical blood tests and care prior to a first appointment? I pulled it off as best I could and of course I left out a few items which might have helped.  Thinking back now, these overlooked event just would not have made any difference in the outcome of this appointment.

 When he entered the room, he seemed like he had better things to do. He even stepped out of the room to take a call and was gone for almost 10 minutes. When he did return I had to go over information which I had already covered. After that he then proceeded to tell me that he looked over my records and that there was no possible way I could be suffering with carcinoid syndrome. He said he had no doubt I had been suffering with something, but it wasn’t carcinoid related.

I was floored. This guy had no clue what he was talking about. At that point I felt it was in my best interest to wrap it up and leave. He then said something to me that just made my blood boil. He asked me if he arranged for me to get Sandostatin injections every 14 day would that make me happy? The implication was that he wouldn’t be following on this and that I would not be followed in oncology any longer.

This just kept getting better! Did he really just imply I was a drug seeker, requesting a medication that has no addictive properties whatsoever? A drug that in reality would have NO effect on a normal person unless they had the illness and in need of suppression of those related symptoms? I almost had no words. I wanted to come unglued at that point and tell him what I really thought of him. I was so hurt and angry.

I did not give him an answer and just listened to him as he continued to tell me things about carcinoid cancer that have either been disproven or that have been out of date now for past 20 years. I began to wonder if this guy was living under a rock.

I have been treated for this cancer/syndrome now for seven years. It is very well documented. I have had several instances of what they call carcinoid crisis during surgeries and procedures. How can they wipe out seven years of my medical history because two doctors have decided that there is no possible way I could have carcinoid syndrome. I don’t understand it.

I would have fought harder in that appointment but this doctor had his mind made up from the moment he walked in the room. There was nothing I could say to change it.

Now I get to do damage control. I need to see what my next step will be. I am afraid my next step will have to be arbitration with the insurance company. That can take 12-18 months and I have to get a lawyer.  At this point I am not even sure if I will be able to continue to get the Sandostatin that brings relief from the debilitating symptoms associated with carcinoid cancer.

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Helping People Understand NET’s Awareness Day

11.10.2010

NET’s Awareness Day (Neuroendocrine/ Carcinoid Cancer) is coming up November 10th.  I thought would do a post on symptoms of Carcinoid syndrome (caused by NET cancer/Carcinoid tumors). Along with that how it is so often miss-diagnosed as IBS or Crohn’s disease.

Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why they fail to catch it early. However as time goes on and traditional cures for IBS & Crohn’s fail to work. The patient gets even more ill and the doctor has a choice. He/she can continue to search for the real cause or as in most cases they just continue to treat as IBS and or Crhon’s.

Many people go for 5 years or more (in my case it was 6 years) before being properly diagnosed. Most are stage 4 by the time they are diagnosed, and by that time it has spread to distant regions. There is no cure for Neuroendocrine/Carcinoid Cancer by the time it has spread. The reason most are stage 4 and it is caught so late is because doctors don’t look outside the box. They don’t want to think maybe it could be something else more rare.

The reason most doctors do not bother to look into more rare causes for symptoms is one thing they hear over and over in med school.

“If you hear hoof beats, think horses, not zebras.” They are taught it is generally more productive to look for common rather than exotic causes for disease.

Most of the time people are finally diagnosed when they have Carcinoid Syndrome (after it has spread). The syndrome symptoms can actually be very alarming and scary.

Carcinoid Syndrome Symptoms:

  • Flushing
  • Diarrhea
  • Heart valve lesions
  • Cramping
  • Telangiectasia
  • Peripheral edema
  • Wheezing
  • Cyanosis
  • Arthritis
  • Pellagra

I was going to explain all the symptoms, but there are sites out there that would do a much better job at it. There are so many websites out there now dedicated to helping people with Carcinoid cancer (just wish there were more doctors). When I was first diagnosed there was very little information out there.

The website I am using for this is CarcinoidLink. It is set up specifically to help people understand Carcinoid syndrome and how to manage it. Also it has downloadable pages for people to track symptoms so they can take them in to show their doctor. Helps them know how the therapies are working or not working.

The biggest reason I wanted to use it for this post is because it is easy to find information and easy to understand. Here is the link.

Carcinoid Link:

http://www.carcinoid.com/patient/understanding/carcinoid-syndrome-symptoms.jsp

Please…..

Check it out and feel free to ask questions. Email me if you like. The more understanding and awareness we get out there about this the more doctors will educate themselves. They will have to take it more seriously. With education they will be able to recognize it and maybe treat it in people before it becomes stage 4.

Neuroendocrine/Carcinoid Cancer is a horrible disease to live with. Right now here in the US we only have a handful of specialists and very few therapies to help us. If this were Europe we would have so many more options. They have therapies and procedures to prolong life that have been used for 10 years or more, that here in the US are just now in clinical trials.

I know so many who have paid to go over seas for treatment because of the limited options here. Most would not be alive today if they did not go. The therapy I am referring to is called PRRT (Peptide receptor radionuclide therapand) requires 3 trips to Europe. Each trip costs 10,000 US dollars. Most that I know have done fundraisers to go (some have used their own money if they had it). However this is not an option for most.

Over the past 2 years I have seen so many (10 or so) die from this. Some I knew some I just knew of. Being this is a rare disease you kind of seek out others who have it. It is like our own community and when one of us Zebras (as we call ourselves) dies it really affects the rest of us.

We do our best and live life to the fullest. Our ribbon is zebra striped (as you can see above) for the zebra. Last year I made this graphic and it is true. Our stripes do make us unique. We are a proud few and we are survivors.

I made this graphic last year and it is true. Our stripes do make us unique.

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We finally landed……

Much has happened since I blogged last. We did finally land and got moved into a new apartment. Of course we had to spend 3 weeks down in southern CA waiting for the apartment to be ready.

 

We were able to make a trip to Disneyland (a very generous graduation gift to my older daughter, from a very dear friend). Was an awesome trip. PA was in heaven and LOVED all the rides. Her favorite was Star Tours & Space Mountain surprisingly enough. We were able to spend some much-needed family time together. My husband did make me sit in a wheel chair to get around though. I was not feeling well.

 

Turned out a few days after that I went back into the hospital. I could not eat and was in horrible pain. I ended up having a tumor taken out of my bile duct & had several stints put in. Apparently my bile duct was completely blocked with scar tissue and the tumor. Then the next week I recovered before we finally were supposes to come home.

 

The morning we were supposed to leave my husband went down the stairs (was 2am and dark) and slipped down the bottom 3 or 4 steps. Instead of leaving we got to take another trip to the ER. Only this time was to see if he broke his elbow. Turned out was not broken but badly sprained. He also hurt his back again and is going in this next week for an MRI to see what damage he might have done to his back. He had 2 back surgeries a little over 10 years ago.

 

We were able to make the trip back the next day. Of course it was raining, but with the help of my in laws and my older daughters boyfriend & his brother we were able to get it done.

 

It has been a rough month. All of us have had to make adjustments living in a smaller place. Poor PA has had it the worst. She is still not sleeping and is really making life hard some days for me. I am hopeful she will settle down soon.

 

Now a month later, we are a little more settled. This next week I will get PA registered at her new school. I also have more testing in nuclear medicine coming up (an octriotide scan). Then I also have appointments with specialists. I also have another surgery the last week of Aug. It will be a busy month. I hope to update a little bit more often.