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
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