June 22, 2007
Needles and injections and bruises…oh my!!
I had my follow up appointment with Dr. Lamont last week. As we already knew, all of the preliminary blood tests that he ran came up negative so the first thing we tried was to add probiotics to my usual regiment of medications. After 3 weeks of this, there was no change in the number of bathroom trips per day, so we knew that we had to try something stronger. As we had previously discussed, my next option was Sandostatin. The good news is that there is now a generic form of this drug (which saves my insurance company a good $10,000 a month) and I can now get the drug from my local pharmacy rather than having to do mail order. I’m grateful for the small conveniences.
So, I dropped everything off at Brooks (soon to be Rite Aide, but I’ve been assured nothing but the name will change and that they will still be as helpful and compassionate as always) on Wednesday. I then went home to do a little research. My previous experience was with Sandostatin and this time I would be using octreotide which is the generic. Same stuff and administered the same way, just cheaper. Basically octreotide is a man made protein that is similar to a hormone in the body called somatostatin. Somatostatin signals the pituitary gland to reduce the production of growth hormone. Octreotide lowers many substances in the body such as insulin, growth hormone and chemicals that affect digestion. Both octreotide and somatostatin work in the same way to reduce excess hormone secretions that alter various metabolic activities – and improve absorption of excess liquid in the intestines and colon.
After seeing this all spelled out I guess I do have some concerns about playing with my hormone levels, but my previous experiences with Erbitux, CPT-11, 5-FU and all those other fun chemotherapy type drugs have wreaked havoc with me so nothing really works as it should. And if octreotide does decrease my bathroom visits to under double digits per day, then it’s worth it to me to get at least some sense of normalcy back in my life.
By Friday, I had my first vial of octreotide and 28 syringes to get me started. Unfortunately Pat left on Friday morning for a weekend of fishing (yes, I did say fishing…) so I was on my own to administer the first 5 injections. I had done this previously so I was not too concerned and I still have nerve damage in both legs so I figured that would be the best place to start. 24 hours later I had my first 2 black and blues and a third one on the way. Since you have to rotate injection locations, I am able to decorate my legs and arms with lovely bruises and not have to punish the same location time after time. By Sunday when Pat arrived home the damage was already done. He has administered every shot since his return. And guess what? No new bruises!! Woo hoo!! I think perhaps he spent the weekend practicing injections on the fish because last time we went through this, he was not this good. (See posts from April – August 2005).
I’ve now had 14 injections and so far I’ve experienced migraines, nausea, and my diarrhea has actually increased – 5 rolls of Charmin Ultra in 5 days. I spoke with both the pharmacist and my doc and we decided that if I could handle the side effects, then we would continue and hope things take a turn for the better in the next week. When I reviewed my notes from my last rounds of Sandostatin, I did see that I had an increase in the diarrhea before it got better, so I am hopeful. Also I am on the lowest possible dosage. I am going to talk to the doctor next week about possibly increasing the daily injections to 3, and perhaps more milliliters at each injection also. I really, really need this to work because there is no other plan. We don’t know where to go if this doesn’t work. As it stands right now, twenty plus trips a day to the bathroom, including 8-10 overnight do not make for a well rested and energized Jean. Pat is fortunate to be traveling so much as at least he gets a couple of nights of good sleep. Poor Cooper bears the brunt of my overnight bathroom trips (black dog who insists on sleeping in front of the bathroom door is bound to get stepped on once or twice).
Though I have no work travel on my radar, Pat has been taking bi-weekly trips to lovely Columbus, Ohio for his job. Lucky him! We’d both love to take a real trip somewhere but I refuse to even consider it until I have some sort of control over this diarrhea. Just last night I used the bathroom in my office before I left for my train, used the bathroom in the train station, then the one on the train, and then made Pat stop on the drive home because I had to go yet again. Get the picture? I don’t feel comfortable in my hometown and local surroundings; I can’t imagine someplace where I don’t speak the language. So all travel is on hold – quite a change from years past. And I miss it. There are so many places I want to go. Not someday, not eventually. But soon. And often.
In the meantime I have my garden and my Cooper, oops, that’s Our Cooper. He’s a great dog – loves us both equally. Funny dog too – keeps me entertained. Loves the bathtub and the shower. After his daily runs he immediately goes into the downstairs shower stall – I finally gave up and put an extra water bowl in there for him. If it makes him happy that’s all that maters. He met his doggy cousin Kibbee last weekend. She’s a couple years younger than him, but they could have been brother/sister when they stood next to each other – two beautiful black labs. But she’s definitely more slender and he quickly learned she could/would outrun him. So like a true gentleman he gave up the chase and let her get the ball first. He continues to keep me companying while I’m out weeding my garden or doing my nightly watering. He knows exactly how to sneak in and lap up some excess water from the hose when my back is turned. And I know how to pretend I don’t see him.
Now I must run...guess where?? Fingers crossed that things begin to improve over the next week.
Hi Jean,
I came across your blog accidently and wonder if your are the daughter-in-law of Pat Gasbarro my first cousin.
My father was Ugo Gasbarro. I live in Alaska but spend much of my time volunteering for a non-profit organization in El Salvador.
Sincerely,
Tony Gasbarro
Posted by: Tony Gasbarro at June 26, 2007 08:59 PMJean,
As always, I love your blog. You have a way with words. I pray and meditate for you and your intestines - may you poop less soon.
Many hugs,
Brenda
Hi Jean,
reading this - I feel your frustration & pain. I fully understand where you are coming from with the multiple trips to the loo!!! I had Ulcerative Colitis and - prior to my MOAS - was visiting the loo 30 plus times a day accompanied by intense pain. Very debilitating!!! I only hope & pray that this latest treatment works for you & that you can get back some decent quality of life.
Hugs & prayers,
Kay :)
I ran across your blog when I did a search on Erbitux. My husband(39) was diagnosed with stage IV colon cancer in November 2006. When he was diagnosed the cancer had already spread into his abdominal wall. When I looked back at your history some of your prior surgeries are similar to what my husband has had here in Minnesota. He had the cytoreductive surgery to remove all seeding inside his abdomen, part of his diaphragm, his spleen, his omentum and his gallbladder removed. Then he had the heated chemotherapy inside his abdomen. He has been doing great since that surgery. Previous to that his first surgery he had a large part of his colon removed and has a temp. ileostomy. It will be reversed(taken down) sometime in the fall if his scans continue to come back clear. Anyhow, I just wanted to tell you that your story is inspiring. We are dealing with great doctors. The only issue I have with any of them is my husbands oncologist. He is really positive a lot of the time and other times he finds it necessary to remind us that the likelihood that the disease is really gone is not very good. It is frustrating since we are well aware that recurrence is a possibility, but don't need to be reminded of it so often. I just wanted to wish you well and share part of our story since some things especially in the beginning of your battle were similar to my husband. Do you mind sharing your age? Feel free to email me. Take care. Allie
Posted by: allie at July 10, 2007 09:26 PMHi Jean,
Just read your update and I see you are still trying to find a medication to help with your issue. I hope this new stuff does the trick. I see you are enjoying being a homeowner, it's lots
of work but at least you can add your own personal
touch. Everyone here is doing well, our house is up for sale but the market is very slow, so I think it will take awhile. Stephanie is doing well, she still has to watch what she eats or she
could spend lots of time in the bathroom too.
In May she had her scans and they came back negative, just an enlarged thymis gland(don't know how to spell it) in her chest. They are keeping an eye on it. In spite of everything she looks very well. I will be retiring in Sept. and
then moving down to the shore, near Patty and Joe. I hope things improve for you, so take care of yourself, and I will watch for an update.
Kathie
