10-11-12
I went to the Infusion Center for my Octreotide shot today. I go in every two weeks to get an injection of 20mg of a long-acting shot of Octreotide, but today I went in with my husband driving and me leaning on my walker. I usually drive myself in, and I might use a cane just to help me traverse the large, open spaces more securely. I rarely use a walker.
Between September 27 and November 21 of 2012, I learned two things are very important in getting good treatment in the infusion center:
(1.) I need a medical assistant who understand that my vitals need to be taken promptly after I arrive. Then the order needs to be faxed to the pharmacy as soon as possible.
(2.) Also, an RN needs to be ready to give the injection as soon as it arrives. Sometimes this is facilitated by having a terrific medical assistant who has an RN ready when the Octreotide arrives.
On September 27, the lovely assistant Juliana was not working when I got to the Infusion Center. I had arrived when she was at lunch. The Center was busy, so I didn't protest when I sat there over 30 minutes without having my bp, pulse, etc. checked.
Then a medical assistant I had never seen before was standing in the doorway shaking my syringe back and forth!
I said, "My shot is here, and you haven't even taken my vitals yet!?"
She didn't seem to know anything about taking my vitals...
To make a long story short, I got sick before the next injection because the medication was delayed about 10 minutes after the pharmacy technician arrived with the shot. The "sickness" is an unusual weakness that began on Monday and lasted until Friday. I could not do my usual chores. My husband drove me to the grocery store and I walked around using my walker to lean on and to hold a few groceries. At one point I was so weak that my arms could not hold on to a jar of jam, and I asked my spouse to put it in the grocery cart.
Continuing this on November 24, 2012: the next three treatments were completely different. Juliana and Ermalinda teamed up to make sure my shots were given exactly as they should be done. Juliana would get my vitals in 10 or 15 minutes after I arrived; the order was faxed to the pharmacy; the injection was given about two minutes after it arrived, and I was out of there in 45 minutes.
So, getting a couple staff members on your side is very helpful.
I hope you are well. In the USA we are approaching winter and the Holiday Season. To my friends in Australia I hope your Christmas is great and your BBQ is delicious. Happy days!
Sharon
Saturday, November 24, 2012
Thursday, August 9, 2012
The Summer of 2012
In southern California this has been a pleasant summer. We live in a hot area where temperatures usually reach 105-110 F for several days each year. The rest of the summer always has many weeks with highs 95-104. This year we have had a mild summer so far with many days of only 92-94 F. It has been pleasant enough in the evening for us to open doors and windows to let the cool breeze in after 7:00 pm. I have prayed for the states in the middle of the USA where they have been experiencing many weeks over 105 F.
This week we have entered our really hot time with highs from 105-107 F. It is good that I have become a nightowl in retirement; I do one load of laundry in the morning and the rest is done after 9:00 pm. This is just to conserve energy during the hottest hours. We are allowed to use power when we need it and, unlike Los Angeles County, we can water our plants any day of the week. My personal opinion is that our summers are shifting to later in the year; I think we will be hot August to October.
Therefore, since the weather has been mild, I have been doing well. One of my most anoying symptoms of carcinoid is the heat and sweating on my head and back. If I can keep the house cool, I not as uncomfortable or as dehydrated. However, I have started a few new symptoms in the last two months. I believe they are from both Sjogren's Syndrome and carcinoid.
1. My feet are tingling from exposure to cool temperatures. I have worn socks to bed for years so I can sleep without waking up due to cold feet. For five years I have worn socks all over the house day and night. Last month I finally realized my feet have an unusual sensitivity to cold; they feel irritated by cool temps around them. My rheumatologist called it tingling and had the nerves in my feet tested just two days ago. My feet and toes responded well to the stimuli, so I think it is the neuropathy due to Sjogren's. I have already gone through the sensation of burning feet about 10 years ago.
2. My hair is falling out in a new way. Since surgery and going on Octreotide, I have had thinning hair so that when I parted my hair the parts were 1/2 inch wide. For six months I have been losing hair in larger amounts. I can't see what is going on with my scalp except on the sides. Yesterday I saw a round bald spot about 5/8 inch wide. I think that is probably an autoimmune problem, so I will ask the rheumatologist about it when I find out about the nerve test.
3. The amount of my body that gets too hot increased. I can now get hot on the top of my arm, just as if I was wearing cap-sleeved blouse made of heat. That's gotta be from carcinoid.
The amount of medication I am presently getting is a 20mL shot of Octreotide every 14 days at the medical center and a 100 microgram shot of Octreotide Acetate aqueous twice a day at home.
So this is how I am 5 years after my first tumor began to develop. Thank God for the slow prgression of my disease. My energy level is much the same as my last blog stated. I have to pick my battles, as they say. I can do some things and not others, but that is OK.
Love,
Sharon
This week we have entered our really hot time with highs from 105-107 F. It is good that I have become a nightowl in retirement; I do one load of laundry in the morning and the rest is done after 9:00 pm. This is just to conserve energy during the hottest hours. We are allowed to use power when we need it and, unlike Los Angeles County, we can water our plants any day of the week. My personal opinion is that our summers are shifting to later in the year; I think we will be hot August to October.
Therefore, since the weather has been mild, I have been doing well. One of my most anoying symptoms of carcinoid is the heat and sweating on my head and back. If I can keep the house cool, I not as uncomfortable or as dehydrated. However, I have started a few new symptoms in the last two months. I believe they are from both Sjogren's Syndrome and carcinoid.
1. My feet are tingling from exposure to cool temperatures. I have worn socks to bed for years so I can sleep without waking up due to cold feet. For five years I have worn socks all over the house day and night. Last month I finally realized my feet have an unusual sensitivity to cold; they feel irritated by cool temps around them. My rheumatologist called it tingling and had the nerves in my feet tested just two days ago. My feet and toes responded well to the stimuli, so I think it is the neuropathy due to Sjogren's. I have already gone through the sensation of burning feet about 10 years ago.
2. My hair is falling out in a new way. Since surgery and going on Octreotide, I have had thinning hair so that when I parted my hair the parts were 1/2 inch wide. For six months I have been losing hair in larger amounts. I can't see what is going on with my scalp except on the sides. Yesterday I saw a round bald spot about 5/8 inch wide. I think that is probably an autoimmune problem, so I will ask the rheumatologist about it when I find out about the nerve test.
3. The amount of my body that gets too hot increased. I can now get hot on the top of my arm, just as if I was wearing cap-sleeved blouse made of heat. That's gotta be from carcinoid.
The amount of medication I am presently getting is a 20mL shot of Octreotide every 14 days at the medical center and a 100 microgram shot of Octreotide Acetate aqueous twice a day at home.
So this is how I am 5 years after my first tumor began to develop. Thank God for the slow prgression of my disease. My energy level is much the same as my last blog stated. I have to pick my battles, as they say. I can do some things and not others, but that is OK.
Love,
Sharon
Wednesday, May 30, 2012
The Month of May
May has been the month when I needed to increase my medication. Last month I needed to supplement my Octreotide LAR with shots at home only for a few days before and a few days after my treatments. During May I gradually added one shot per day, until I am now on one injection every morning and one every night.
My injections are 0.1 mcg of Octreotide Acetate (aqueous) in a pre-filled 1mL syringe. I increased my meds to 2 shots when I had symptoms of waking up hot, sweaty, and with that feeling of "increased bowel motility". First, I began taking one shot every morning because I don't like the feeling of having my back on fire while I'm on my computer in the evening. That feeling has disappeared this month.
So this is just a report to say that things continue to be good. I had a very good April as my strength increased from a rough episode in December and January. I am not really strong compared to going out and doing things as much as other people do, but I can garden and walk Spunky. Last week I was able to take Spunky on one of our long walks like we did a couple years ago; so that is good. On the other hand, we went to San Diego over Memorial Day weekend, and I can only walk around for about three hours. I can go out for the afternoon or the evening, so I have to decide what I really want to do.
One goal I have had for a few years was accomplished this month. The man (Jeff) who takes care of our lawn created a planter in front of our yard. No bricks involved. He created a curved shape for me and filled it in with plants from elsewhere in the yard. Our yard in front of the house looks quite traditional: roses, a fern, lacy hydrangeas, and a type of heather. The side yard that Jeff landscaped about five years ago has Allium, peach daylilies, and other things I had never planted. I wanted the front planter to integrate the two looks.
So the new planter looks great! Jeff used a deep red daylily, a peach one, some heather, pink roses and Allium to pull it all together. So that is a goal fulfilled from my post about "You can't Change everything, but you can Change Some Things."
Sharon
My injections are 0.1 mcg of Octreotide Acetate (aqueous) in a pre-filled 1mL syringe. I increased my meds to 2 shots when I had symptoms of waking up hot, sweaty, and with that feeling of "increased bowel motility". First, I began taking one shot every morning because I don't like the feeling of having my back on fire while I'm on my computer in the evening. That feeling has disappeared this month.
So this is just a report to say that things continue to be good. I had a very good April as my strength increased from a rough episode in December and January. I am not really strong compared to going out and doing things as much as other people do, but I can garden and walk Spunky. Last week I was able to take Spunky on one of our long walks like we did a couple years ago; so that is good. On the other hand, we went to San Diego over Memorial Day weekend, and I can only walk around for about three hours. I can go out for the afternoon or the evening, so I have to decide what I really want to do.
One goal I have had for a few years was accomplished this month. The man (Jeff) who takes care of our lawn created a planter in front of our yard. No bricks involved. He created a curved shape for me and filled it in with plants from elsewhere in the yard. Our yard in front of the house looks quite traditional: roses, a fern, lacy hydrangeas, and a type of heather. The side yard that Jeff landscaped about five years ago has Allium, peach daylilies, and other things I had never planted. I wanted the front planter to integrate the two looks.
So the new planter looks great! Jeff used a deep red daylily, a peach one, some heather, pink roses and Allium to pull it all together. So that is a goal fulfilled from my post about "You can't C
Sharon
Thursday, April 19, 2012
A Very Good Prognosis
For several months I have subscribed to a service provided by ACOR. (That's an American Cancer group that sponsors an email list for various cancers.) It is a list for carcinoid patients and their caregivers to write each other and write Dr. Eugene Woltering, who is a carcinoid expert at LSU. He has a team of doctors, nurses, dietitians and others at Kenner, Louisiana.
The carcinoid patients share information about their particular case, and write about ideas that have helped them. It was from this group I learned that my dose of Octreotide LAR could be split in half. I found another woman whose metastatic tumor in her liver shrank after she began Octreotide treatment, and is so small that it cannot be seen in scans; so I am not alone. It's quite amazing for me to be able to address a question to an expert who has seen over 1000 carcinoid patients. He, also, has access to data from many more patients, and publishes about neuroendocrine cancer.
Therefore, on April 3 this year, I decided to ask Dr. Woltering what my prognosis is. I had been reading other's posts for months, hoping to see anything similar to mine. However, no one else had a primary tumor in the same location as mine, so I went ahead and asked him.
My email:
Subject: Dr. W Ever Seen a Metastatic Microtumor in Proximal Duodenum?
Dear Dr. Woltering,
I'm in good condition right now. My primary tumor (0.7 mm) was removed in 2008, and the small metastasis in the "dome of the liver" seems to be kept calm by Octreotide most months.
I'm just curious if you've had any experience with a foregut tumor in the prox. duodenum? Is the prognosis about the same as for midgut tumors? I've seen information that my odds are better on one hand, and that they are worse because they are microtumors, on the other hand.
I have been helped by your advice to break up my 40 mg of Octreotide LAR into 2 shots per month. Thank you.
God bless,
Sharon
The answer from Dr. Woltering was "Way better prognosis."
So I figure I'm good for the next 20 years. I didn't say things would always be good for 20 years, but there is a brochure that says carcinoid patients can live for 20 years. (I met a couple on the Internet.) If I have a way better prognosis than the typical carcinoid patient, I'm going for 20 beyond the 5 years I've already had!
Thank you very much!
The carcinoid patients share information about their particular case, and write about ideas that have helped them. It was from this group I learned that my dose of Octreotide LAR could be split in half. I found another woman whose metastatic tumor in her liver shrank after she began Octreotide treatment, and is so small that it cannot be seen in scans; so I am not alone. It's quite amazing for me to be able to address a question to an expert who has seen over 1000 carcinoid patients. He, also, has access to data from many more patients, and publishes about neuroendocrine cancer.
Therefore, on April 3 this year, I decided to ask Dr. Woltering what my prognosis is. I had been reading other's posts for months, hoping to see anything similar to mine. However, no one else had a primary tumor in the same location as mine, so I went ahead and asked him.
My email:
Subject: Dr. W Ever Seen a Metastatic Microtumor in Proximal Duodenum?
Dear Dr. Woltering,
I'm in good condition right now. My primary tumor (0.7 mm) was removed in 2008, and the small metastasis in the "dome of the liver" seems to be kept calm by Octreotide most months.
I'm just curious if you've had any experience with a foregut tumor in the prox. duodenum? Is the prognosis about the same as for midgut tumors? I've seen information that my odds are better on one hand, and that they are worse because they are microtumors, on the other hand.
I have been helped by your advice to break up my 40 mg of Octreotide LAR into 2 shots per month. Thank you.
God bless,
Sharon
The answer from Dr. Woltering was "Way better prognosis."
So I figure I'm good for the next 20 years. I didn't say things would always be good for 20 years, but there is a brochure that says carcinoid patients can live for 20 years. (I met a couple on the Internet.) If I have a way better prognosis than the typical carcinoid patient, I'm going for 20 beyond the 5 years I've already had!
Thank you very much!
Friday, January 27, 2012
How is Sharon Doing in January 2012?
Hi,
When there is a new year, I think back to my perceptions of the future from my childhood. I guess by now I expected all our cars to drive themselves, after being linked to a rail (or something) on the street. I sure didn't imagine computers.
So, to bring you up to date on how I am doing... Last month I had an unexpected reaction to being on 40mg LAR of Octreotide. I had my dose increased from 30 mg to 40 mg in June or July 2011 to help with symptoms like excessive heat from the top of my head down to my sacrum. However, in December 2011 the 40 mg treatment backfired.
I was very tired on the 3rd day after my Octreotide shot and left a Christmas party early. The next day I had the horrible diarrhea that carcinoid is so famous for inflicting. I was sick 10 times. I used Welchol twice and gave myself 2 shots. It seemed like there was a halfway point where the medication slowed things down for a couple hours, and I got some rest. By midnight it was over and I got some sleep.
In the next week I became extremely weak. I should have never gone out on December 22 with just a cane to support me, but I forgot that people would be out Christmas shopping in droves. I was just getting my usual haircut, but had to walk about 200 feet from the salon back to my parked car. I was hanging onto my cane for dear life. Thank God, a kind soul in a white Honda Accord waited for me to get across a crosswalk in the parking lot and prevented other cars from running over me.
After that day, I saw my internist, and he prescribed a walker for me. I got an answer regarding what had gone wrong from my oncologist a week later. He read me a list of symptoms from his computer that sounded much like what I was experiencing. It, also, sounded lots like carcinoid cancer symptoms with the exception of the extreme weakness. They were the symptoms of having a reaction to Octreotide, my medication.
I had not expected to have problem with my cancer treatment, I just thought it was my cancer making me weak. So now we had a new puzzle to figure out. Should I change medications? Change the dose? What to do?
I went to Dr. Eugene Woltering who responds to questions patients post on the ACOR email list for carcinoid. He suggested that we split my Octreotide 40 mg LAR into two doses per month. Twenty mg every 14 days. My oncologist agreed to do that. I did not want to switch to Afinitor or another drug because Octreotide or Sandostatin is the drug of choice for carcinoid patients.
When there is a new year, I think back to my perceptions of the future from my childhood. I guess by now I expected all our cars to drive themselves, after being linked to a rail (or something) on the street. I sure didn't imagine computers.
So, to bring you up to date on how I am doing... Last month I had an unexpected reaction to being on 40mg LAR of Octreotide. I had my dose increased from 30 mg to 40 mg in June or July 2011 to help with symptoms like excessive heat from the top of my head down to my sacrum. However, in December 2011 the 40 mg treatment backfired.
I was very tired on the 3rd day after my Octreotide shot and left a Christmas party early. The next day I had the horrible diarrhea that carcinoid is so famous for inflicting. I was sick 10 times. I used Welchol twice and gave myself 2 shots. It seemed like there was a halfway point where the medication slowed things down for a couple hours, and I got some rest. By midnight it was over and I got some sleep.
In the next week I became extremely weak. I should have never gone out on December 22 with just a cane to support me, but I forgot that people would be out Christmas shopping in droves. I was just getting my usual haircut, but had to walk about 200 feet from the salon back to my parked car. I was hanging onto my cane for dear life. Thank God, a kind soul in a white Honda Accord waited for me to get across a crosswalk in the parking lot and prevented other cars from running over me.
After that day, I saw my internist, and he prescribed a walker for me. I got an answer regarding what had gone wrong from my oncologist a week later. He read me a list of symptoms from his computer that sounded much like what I was experiencing. It, also, sounded lots like carcinoid cancer symptoms with the exception of the extreme weakness. They were the symptoms of having a reaction to Octreotide, my medication.
I had not expected to have problem with my cancer treatment, I just thought it was my cancer making me weak. So now we had a new puzzle to figure out. Should I change medications? Change the dose? What to do?
I went to Dr. Eugene Woltering who responds to questions patients post on the ACOR email list for carcinoid. He suggested that we split my Octreotide 40 mg LAR into two doses per month. Twenty mg every 14 days. My oncologist agreed to do that. I did not want to switch to Afinitor or another drug because Octreotide or Sandostatin is the drug of choice for carcinoid patients.
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