Carcinoid Treatment PRRT #3 .... Sandostatin LAR and Somatuline

Hello,
First a big heart-felt thanks to all who have sent me posts and e-mails.  I really appreciate your thoughts and hearing about your experiences too.  I am late in responding to some and I hope to do that very soon.


Today I have some interesting results and thoughts to share.  My blood work came back basically good - good for me, that is.  My liver enzymes are always elevated now (since chemoembolization #3), but post-PRRT my white and red blood cell and platelet counts are going down as expected.  Nothing to worry about says my doc.  


The great news is that I am now feeling better than I have in the past year!  Yep!!  I feel like doing more, can do more.   It is nothing short of a miracle, really.


Also. I am not having the severe depression, migraines, and heart palpitations.  Of course this is in part due to being back on my monthly Somatuline (lanreotide) injections (120mgs every 28 days).


Which brings me to some thoughts on carcinoid syndrome.  I have had many discussions lately with other carcinoid survivors who, like me, have syndrome.  Everyone's syndrome seems so different.  


For me, carcinoid syndrome can include any of the following:
diarrhea, flushing, pulsing episodes of anger or anxiety, migraines, bodily aches, joint aches, heart palpitations, nausea, disorientation, abdominal pain, and the BIG "F" fatigue.  I have confirmed this through talking with so many other syndrome survivors, doctors, and also octreotide rescue shots seem to help.  


Adjustments to my monthly meds are a vital and normal part of life.  As my disease progresses, my syndrome gets worse, then I need more medication to control syndrome.  After treatments my syndrome gets better and then we reduce meds.


At one point my syndrome was so bad I was on 40mg of Sandostatin LAR every 14 days and it still wasn't controlling my syndrome.  Yep, two shots in the butt every 14 days.  I developed a reaction to the Sandostatin LAR at that point.  Flu-like symptoms for 3 days after my shot - low grade fever, aches and pains, fatigue, injection site swollen and hot.  Then I developed a red-hot prickly rash on my arms, legs and buttocks.  This all stopped when I stopped LAR, started again after re-starting LAR, and stopped again after finally stopping Sandostatin LAR..   


That was when I made the switch to Somatuline.  August 2008.  Instant relief for me.  No reactions and better syndrome control.  


I need to send my labs to the wonderful Dr. Baum in Germany's Bad Berka Klinik where I got my PRRT treatments and share with him the good news about how I am doing.


My local oncologist is going to work with our medical group (again) to beg that they pay for PRRT.  He has seen the incredible life-saving results PRRT has given me and wants to be able to make this available for his (growing list of) carcinoid patients.  Go Dr. S.  !!!


It is a crime that we do not have this life-saving treatment here in the USA.  What can we do as individuals to help??  Please share your thoughts and info here and help to spread the awareness.


Peace,
Andrea

Carcinoid - Life After PRRT #3

Today marks 3 weeks since my 3rd PRRT.  I am still up and doing things but my energy levels are starting to fall off.  For example, yesterday at 1pm, I had to lay down for a nap even though I woke up at 930am and had slept for over 9 hours.  Being able to sleep and rest is foremost in my mind.  This is the same trend as the last PRRT;  I had energy for a couple weeks after I got home and then I tanked for 2 months.  Yawn.


This is explained by the effects of the radiation on the body.  Starting in July I will have to monitor my blood levels and they will drop again - white cells, red cells, platelets.  I suppose fatigue means my body is also processing a bunch of dead tumor tissue to which I say, "Good!  Death to you buggers!"


Off to rest - I am too tired to write more now.  

End-stage Carcinoid Cancer

Hi.  If you are reading this post you may either have been diagnosed with or suspect carcinoid, or have a family member or friend with carcinoid.  I have advanced carcinoid, so I will warn you now that what I am about to say may not be encouraging to you.  This is about my journey through end-stage carcinoid.  I am sharing this because I don't read much about end-stage carcinoid and I just thought maybe others would may be interested to know and maybe share also.

I am giving myself this label now:  end-stage carcinoid, and now I tell people I have terminal cancer.  Since I was diagnosed in May 2006, I would say I am a carcinoid survivor, or that "I have" carcinoid cancer.  Now, I am making my own distinction based on what I am hearing from my doctors.  Believe me, they candy coat everything so this is my own doing.  I just need to know where I am in the process so I can figure it out the best I can.

I just got back from my 3rd PRRT in Bad Berka, Germany last week.  The incredible Dr. Baum, God bless him, showed me my new GA68 scans.  The good news:  my disease in considered "stable/remission" according to Germany's standards of measuring things.  That means no new tumors, and the tumors I have all show decreased "uptake" and even the huge liver tumor is necrosing, or dying.

The truth about my disease status:  my liver is huge.  The normal-sized liver is protected by the rib cage and ends at the bottom right rib.  My liver has grown all the way down to my right hip.  My whole liver shows "uptake" which means that my whole liver is full of tumors.  I asked Dr. Baum: what is my prognosis?   Something US doctors won't answer directly.  Dr. Baum told me that my liver is critical and that if I had not gone for PRRT last year I would probably not be here now.  Since my liver is all full of tumors, he said there is no liver resection possible for me.  Only possibly a liver transplant and that they have done 4 at his hospital for carcinoids.  He asked me if I have a sibling that might give me a half liver.  Since my sister stopped talking to me when I got diagnosed with cancer, I really don't have a sister.  Dr. Baum told me I would probably die waiting for a liver, since I'm not Steve Jobs, so there is basically nothing left for me but to live my life while waiting for my liver to fail.

Meanwhile, he did say it may be possible to continue PRRT treatments.  The problem is we are out of money and this treatment is not available in the USA.   My husband's employer, by some miracle of God, paid for my 3rd PRRT but I cannot expect they will pay for another.  

As my disease has progressed I talk more with others who, like me, have advanced carcinoid, I am learning that  so many of my recent ailments are carcinoid-related.  The migraines, heart palpitations, the high/low blood pressure variations, the extreme fatigue.  This on top of all the other carcinoid syndrome symptoms that I have been trying to manage for the past 4 years.  As my disease progresses, I can expect to have more illness, sometimes severe and then getting better, until one time I won't get better.  We just won't know which time that will be.

Dr. Baum told me that a person with a liver like mine is like a 20 year old strapping young man with hepatitis C.   The fatigue from the sick liver can be completely debilitating.   My liver functions are still normal, but my liver enzymes are always elevated.  I am afraid of how I will die and I am afraid of suffering.  I do not fear the death itself, just the getting there part.

What can I say?  I am half Slovak and half Siciliana and inherited the traits: "strong like an ox" and "stubborn as a mule".  My mother's motto was "Never, never, never give up"  I think it was a quote from Winston Churchill.  My family jokes is that it would have been better if she had given up sometimes.  Oh how I understand that!

So, I am reading several books to help me through transitions as my carcinoid cancer progresses.   One great book I am reading is called "Handbook for Mortals".  I am learning about the concept of "living with cancer" and "dying of cancer" and that my special transition time can be one of the most meaningful and productive times of my life in so many ways.  This book is helping to make sense of: a lot of hurt, confusion, fear, sadness, and the feeling that  I don't know how to do this dying thing.  The book says, hey - you figured out so many things in your life that you didn't know how to do - you'll figure this one out, too.  I believe that, though it may not be easy.

Because of my caregiver situation, I will need to write down and make as many choices as possible before I cannot do these things myself, like: What hospice do I want to use?  Where do I want to die?  What kind of end-of-life care do I want?  And, how to make all the arrangements for these and so many other things and put them in a book for my husband to follow.

My husband is working full-time, and caring for me and my 2 sons, ages 10 and 15. 

There are so many "letting gos" with cancer.  Each one has to be recognized, grieved, and let go of as I move on to others.  As an engineer, I always envisioned myself working. In 2006, I had to let go of work and all that went along with that: productivity, meaning, identity, friends, and money.  

More recent "letting gos" - that I can't care for my kids or my husband many times.  I can't figure out how to help them or actually help them when I desperately want to.  I have to let go, and be thankful for the things that I can still do for them and myself each day.  

So my plan now is to live in the moment, choose to focus on the good things in life as much as I can, do what I can when I am feeling well, spend time with friends and try to reach out to my fellow noids as much as I can in the time I have left.

If you would like to post a comment, or reply to me in private that would be awesome.

Peace,

Andrea

Back on the Road Again PRRT #3 Bad Berka

These are the guys and the place that I am leaving behind to go for a 3rd round of PRRT in Bad Berka Germany.  It's a hard choice at this point, to be honest.  


I want to share that the 1st PRRT I was so excited to go to get the treatment.  The 2nd trip was OK but after I got home I was so sick.  That 2nd PRRT really kicked my butt.  Now, I am actually dreading going there for PRRT #3 because I know that I will be going again through the pains of a long, hard recovery.




I feel like a shadow of myself.  I feel that the treatments have stripped away at my mind and my "fight" is gone.  I have never felt this low during all the 4 years I have had cancer.  So, why should I go through with this?  It is my only hope at this point, I tell myself.  It is a series of treatments.  Another reason.  I just don't want to go.  But, I am going.


I had the worst headache/migraine of my life this weekend,  Screaming for help at the urgent care.  It took 90 minutes and I vomited over 30 times until I finally got to see the Dr. and got IV meds to help me.  I was scared and never felt so much pain and suffering in my life.  I am scared to travel and hope my primary care Dr will prescribe an injectable migraine med for me before I travel to take with me.


I am so tired and depressed.  I hope and pray that I can endure this trip and treatment, because I really feel all the fight is going out of me. 


Good reader, if you have it in your heart, please pray for me, send healing thoughts, imagine me well....whatever your belief system.  I need help.

Another new symptom this week - heart palpitations

As I prepare for my monthly oncology visit today, I have to prioritize what to discuss.  I have a 2 page summary of my disease that I usually bring to keep my local oncologist up-to-date with my other doctor visits, treatments, symptoms, and my questions of the day.   I have found this above all has helped my doctors visits.


If it would be helpful to anyone, I will probably post this letter minus my personal data.  This is a really important part of any Dr visit.  A big secret, doctors don't like to share, is that they are human too!  Yep, under that white coat they have feelings, get tired, burnt out, preoccupied, and just like everyone there are things and people they don't like.  By the time I see the doctor, who knows what he has already had to deal with today or what is on his plate.  I really try to help him focus on my case, what I need, and try to do it with as little energy as possible.  He is human, too, after all, and has a limited attention span like all of us.


However, today I don't feel like updating my sheet because that makes me have to focus on all that is wrong with me and I'm tryin my best to live like Cleopatra in the land of De-nial.  Can you relate?  I open the file in another window now to help myself get started with this task.


I have a disturbing new symptom to add to my update: heart palpitations.  They started a couple weeks ago.  Just sitting watching TV with hubby, my heart started feel like it was doing flip-flops in my chest.  Kept it up for hours that night and I didn't get much sleep.  In fact, it is doing it right now.   Mental note:  need to check the ACOR carcinoid archives for heart palpitations and check with all my carcinoid buddies from support group.  


Even before I do all of this, I am about 100% sure that this is just another part of my carcinoid cancer and/or carcinoid syndrome.  Maybe my enlarged liver full of tumors is pressing on my heart/circulation and causing this.  Whatever it is, just add another sock to the sock pile.


As I get ready to sign off, I get a blast from the rose bush outside my window.  OK I can't wait to walk out and feel the sun shine on my face.


Peace.
Andrea

My Continuing Carcinoid Journey: Letting Go

Well here is my second post.  I am going to do better at this!  Here we are in May 2010.  I have had 2 PRRT treatments and am going back to Bad Berka, Germany for my 3rd PRRT treatment soon.

What's up?  My carcinoid had been steadily progressing, especially in my liver.  As of  August 2009 I was pretty much out of real options here in the good ol US of A.  So, I quickly had to come to terms with my disease as it was not willing to go on "stop work" until I was ready to deal.  Nope.  The surgeon told me, "Ya need something systemic...surgery won't buy you much, plus the risks, plus the recovery, plus plus plus."  My oncologist, ever the optimist, trying hard to fill his drug trial spots, wants to put me on the Lanreotide trial, "But Doc, I say, I am already on Lanreotide every 28 days."  What's left?  (That I can qualify for and will help me, BTW??)

I had to make fast decisions and I had been following others who were like me. Some had gone ahead with the PRRT.   So, I had to basically tell my doctors, with all respect, and then get their concurrences.

I had my 1st PRRT in Sept 2009 and my 2nd PRRT in January 2010.  With a 11cm liver tumor, several lymph node tumors, one in my spleen, and my friend the meningioma, I found out that I had another tumor in my neck - a lymph node behind my parathyroid.  Ohhhh is that why I always feel a lump in my throat???  Since my neck was never really scanned, you know here in the USA they like to chop us up into every billable scan possible, I had my head scanned, abdomen, pelvis, and the full body Octreoscan.  This little buddy never showed up until I went to Germany and got the Gallium 68 scan.  Would you like me to order an MRI of your neck now??  

Apparently, not all carcinoid tumors are created equal.  The tumors in my spleen and neck do not have somatostatin uptake, IOW, they would not show on a regular Octreoscan.  Also, they don't uptake the PRRT treatment.  Now what do I do with THAT information, I wonder?  But they did show on Germany's state-of-the-art Ga68 scan, thanks to Dr. Professor Richard Baum.  The good ol USA has fallen behind the times.  We don't have quality scans or treatments that are offered throughout Europe as a standard of care.  To quote another carcinoid friend, "It is criminal that PRRT is not in the USA."  End of quote. I ditto that.  Now off my soap box. 

OK.  Two treatments later, I am "stable".  I will take it.  Yep.  I wanna be a "NED" (no evidence of disease...now can you make that into a song, please?) but I'll settle for for "SD" (stable disease).  I have to admit, the 2nd PRRT kicked my butt.  Just like a great fighter, down for the count, I spent two months down for the count and was not sure I was coming back up.  I was sooooooooo tired.  Fatigue just sounds like something military people wear...not a condition that leaves you unable to shower, feed yourself, or get dressed.  Did I say how tired I was?  Oh, and forgetful, too.

Now I am just a shadow of my former self.  I used to be sharp - a Chemical Engineer.  Ready to take on any problem, fix it, do it, debate it.  Now I look blankly at my kids when they ask big questions like, "Mom, can I have my allowance, please?"  

This disease is taking my life, inch by inch.  It's been 4 years since my diagnosis and, gentle reader, whomever you may be, I am holding onto whatever I have left as each day becomes the "new normal".  Yep.  My glass is half full when I can still brush my teeth, care about brushing my teeth, bathe, dress, and OMG go out and drive to watch my son's little league game.  Sorry honey, I can't make it to your weeknight games because Mommy's so sick and just so very tired....promise I'll be there on Saturday.

I am at the delicate cross roads of, "I can't take it anymore" and "The show ain't over yet".  I honestly felt I couldn't take it and didn't want another treatment.  I had a frank talk with God about it.  It went like this, "God, I am really suffering and miserable and I don't want to do this anymore (fight the cancer fight, that is).  So, God if you want me to have this treatment it is all up to you ( I know, it always has been, yes).  I mean, God, you will really need to make this happen because I am not going to try at all anymore.  God, if You want this for me then please make it clear.  

OK.  Would you like to know what happened next?  The very next day my husband's employer called and said that even though the insurance would not pay for this treatment, that the benefits group would be paying for the treatment and the trip.  OK God, I heard you loud and clear.  And, OBTW, the employer will provide a travel agency to make all the arrangements.  WOW God, OK I guess you really want me to have this treatment.  Then, I really don't know who will go with me, I am so weak and we have no one to stay home with the kids while we go out of the country for 2 weeks.  My dear friend and neighbor says she would be happy to come with me.  OK God, I remember the story of Jonah and the Whale.  I get it.  OK.  I am going.

So, I say , "Thanks for everything, for this day and for letting me share."  I leave you with this:

       Like children with their broken toys,

       with tears for us to mend

       I brought my broken dreams to God because He was my friend.

       At last, I snatched them back and said, "How could you be so slow?"

       He said, "My child, what could I do?  You never would let go."

Peace.

Andrea