Dear Friends,
I had my appointment with my oncologist last week. For the last 4 months, we have been meeting every two months because I have been staying stable. My labs have been good: my gastrin was at 33 and my Chromogranin A was at 1.4 this month. So we made my appointment for two months from now.
However, I have not been just fine. Since May 1, I have been flushing everyday. It covers my whole face, instead of just my forehead, as it had done for the previous month. Also, the heat that causes perspiration on my head and neck has increased. Now I feel as if there is a heated circle in the middle of my back spreading from one shoulder blade to the other. I perspire more and I am redder.
My oncologist said he doesn't doubt that my symptoms are caused by the carcinoid tumor. Also, I was red-faced and hot the whole time of my appointment. I didn't have to say much, before Dr. Z decided to increase my medication.
So I reached a milestone in the progress of my cancer. The standard dose (30 mgs) of the Octreotide that I have been getting every 28 days is not enough to control my tumor. I didn't think it was controlled last fall when I had diarrhea daily for 2 1/2 months, but the doctor didn't want to increase my medication because of that. He went for finding a medication that would treat my symptoms, and I started taking Welchol for diarrhea. Now, we have no other way to curb the activity of a neuroendocrine tumor, except to increase the dose of Octreotide.
I have read many accounts on Cancer Compass of other carcinoid patients who add shots to the usual routine of Octreotide. One mother wrote me that her 32-year-old son had fewer problems as he changed his diet in addition to incresed medication. He found he got more relief from a diet of fish, chicken and vegetables.
So I joined the ranks of those of you giving yourselves rescue shots. One more step closer to uncontrollable symptoms. I am giving myself a 100 mcg shot every morning. It doesn't take the flushing away. I have to give myself two shots away to do that, but I will follow the doctor's orders and just use 100 mcg.
Thank you for being here for me. I know some of you are on the same journey that I am on. I see the keywords you look up on Google that bring you to this blog. Thank you to the few people in Germany and the US who read every new post right away. You bless my heart. Thank you for joining me on my journey. It's easier when I am not alone.
Love,
Sharon
Friday, June 17, 2011
Thursday, June 2, 2011
You CAN Change Some Things
Hello! Happy June!
I was looking at the statistics for this blog today. It was interesting to see that someone had chosen to read my post from April 10, 2010 titled "I am the Scourge of Crabgrass, the Defender of the Iris". I reported there how I worked hard for months to remove all the crabgrass from a rectangular flower bed on the east side of my backyard: pulling weeds, spraying with crabgrass killer, pulling weeds again, spraying with Round-Up, and finishing with a pre-emergent crabgrass killer. It's been a year since I reported last, and that garden plot has no crabgrass in it now.
I was looking at the statistics for this blog today. It was interesting to see that someone had chosen to read my post from April 10, 2010 titled "I am the Scourge of Crabgrass, the Defender of the Iris". I reported there how I worked hard for months to remove all the crabgrass from a rectangular flower bed on the east side of my backyard: pulling weeds, spraying with crabgrass killer, pulling weeds again, spraying with Round-Up, and finishing with a pre-emergent crabgrass killer. It's been a year since I reported last, and that garden plot has no crabgrass in it now.
Two years ago, my husband and I began to work on the "no mans land" in our backyard. It was just a section in the southeast corner with nothing attractive planted there. Richard wanted to help make my dream about our backyard come true. It, literally, had been a dream of bowers of azaleas circling the yard. However, azaleas can't survive in the hot sun in Ontario, California. So we planted a camellia and five azaleas in the shade of a large bush, and four Our Lady of Guadeloupe roses beneath the palm trees. I added more paperwhite narcissus and daffodils in the original crabgrass-laden section, threw in some deep red geraniums and blue lobelia, and we finished up with alyssum and California poppies from seed.
It has been lovely to look at the yard this year. I'm just dealing with powdery mildew on the roses because of the recurring rains and shade from the blasted palm trees. However, temperatures over 90 degrees F will soon take care of mildew. My niece came over on Memorial Day and exclaimed, "Everything's blooming!"
Yes, everything that is supposed to bloom in May and June is blooming! There is no crabgrass in the flower bed on the east side of the backyard. The new plants we added are doing well. The three camellias (our first) have gone through their first summer and winter in good health, and the additional azaleas have all bloomed.Therefore, it is true that I can change some things.
So I have tried to derive some principles from this experience:
1. I have to keep working at things I want to change and be consistent in my work. Only attacking the crabgrass once or twice a year had no lasting effect. The weeds would come right back from their roots the next spring. I had to start working in November when the crabgrass was waining, and keep on top of it right through spring when the weeds would have come back again.
2. I have to know what I am dealing with. (Know your enemy.) What I plant has to be appropriate to the environment. Within my yard I have several little micro climates, and I need to know where they are. Our camellias are larger and greener than our neighbor's camellias because we made sure they are shaded by a fence, the house or a tall bush. Our new neighbors had planted two camellias in the middle of their front yard, which faces west. Their bushes are now covered with crunchy brown leaves. Actually, I'll need to look and see if they have any leaves left.
3. God can heal relationships. When my husband heard about my dream of a yard with bowers of blooming azaleas, he said, "We can make your dreams come true." I was moved that he would work on a project just to make me happy. It softened my heart toward my husband.
4. One success can inspire us to try a new one. Now I know I'll have few problems filling in the patch of land that is 18 inches by 5 feet outside the dining room window. My big new project is to put a planter in the front yard where there is none. I want to take the over-abundant plants from the side yard and add two of the roses from the backyard to create a curving planter in front of the house. The planter will have drought tolerant plants in it that will look better than the thinning grass. I estimate this will take two years! I will have to let you know how it goes.
Love,
Sharon
Thursday, May 19, 2011
We are Fine
May is passing by us. I wanted to let you know that we are doing much better. Almost three months ago Richard and I took our daughter to Loma Linda Hospital because she was in a crisis, and I spent a month in agony. That seems far away from me now. The treatment Kay received took several weeks to bring her back to her normal self. Some days I spent my prayer time in tears, wondering when Kay's life and mine would calm down.
Now things are much calmer. Kay is at home and driving herself to various appointments. We are both reading classic books like So Big, Rebecca and My Antonia. We take a day trip out-of-town every two weeks go to the beach or look around a new city. The three of us have been to the former home of Sam Maloof, who was a craftsman of fine wood furniture. Sam gave rocking chairs to every president from John F. Kennedy through George Bush. It was lovely to see the home he built, adding one room at-a-time to a small cottage.
I do not know what the future holds. I have faith the I will continue to be well for several years. It is now 3 1/2 years since I developed carcinoid cancer. There are a few new therapies being developed now. One of them won't work for me because I don't produce 5-HIAA in my urine. However, my oncologist tells me the targeted therapies will be useful to me, and those are getting closer to being used.
I have the tiny carcinoids that are only about 1mm. If you have any information about survival with with that type of carcinoid, I would like to hear from you. I have one tumor (so it seems from the scans) in the upper part of my liver.
My daughter has been helped by her doctors and medication. We have faith that she will be able to go to the mission field, as she has wanted to do since she was 12 years old. If she cannot go, then God has another plan for her here in the US. However, Kay's faith remains strong that she will go back to college to major in Intercultural Studies and serve God with her life.
As we have gone through these had times, our family has been helped by the emphasis at church this spring. Our pastor has been preaching on what to do when life is unpredictable for several weeks. One of his key verses has been Ephesians 1:3. Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ. Another reference is Romans 12:2 Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind.
Some helpful notes:
The issues you are dealing with are already decided by God.
"Failure is the greatest opportunity I have to know who I really am." William Klipinger
(In our church we refer to failures as "setbacks".)
"... the people around me do not make me the way I am, but reveal the way I am." Sam Peeples
This last one means the most to me:
"If I know what I am supposed to do, it doesn't matter what everybody thinks." Pastor Joel.
Be close enough to God to know what God wants you to do.
Blessings,
Sharon
Now things are much calmer. Kay is at home and driving herself to various appointments. We are both reading classic books like So Big, Rebecca and My Antonia. We take a day trip out-of-town every two weeks go to the beach or look around a new city. The three of us have been to the former home of Sam Maloof, who was a craftsman of fine wood furniture. Sam gave rocking chairs to every president from John F. Kennedy through George Bush. It was lovely to see the home he built, adding one room at-a-time to a small cottage.
I do not know what the future holds. I have faith the I will continue to be well for several years. It is now 3 1/2 years since I developed carcinoid cancer. There are a few new therapies being developed now. One of them won't work for me because I don't produce 5-HIAA in my urine. However, my oncologist tells me the targeted therapies will be useful to me, and those are getting closer to being used.
I have the tiny carcinoids that are only about 1mm. If you have any information about survival with with that type of carcinoid, I would like to hear from you. I have one tumor (so it seems from the scans) in the upper part of my liver.
My daughter has been helped by her doctors and medication. We have faith that she will be able to go to the mission field, as she has wanted to do since she was 12 years old. If she cannot go, then God has another plan for her here in the US. However, Kay's faith remains strong that she will go back to college to major in Intercultural Studies and serve God with her life.
As we have gone through these had times, our family has been helped by the emphasis at church this spring. Our pastor has been preaching on what to do when life is unpredictable for several weeks. One of his key verses has been Ephesians 1:3. Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ. Another reference is Romans 12:2 Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind.
Some helpful notes:
The issues you are dealing with are already decided by God.
"Failure is the greatest opportunity I have to know who I really am." William Klipinger
(In our church we refer to failures as "setbacks".)
"... the people around me do not make me the way I am, but reveal the way I am." Sam Peeples
This last one means the most to me:
"If I know what I am supposed to do, it doesn't matter what everybody thinks." Pastor Joel.
Be close enough to God to know what God wants you to do.
Blessings,
Sharon
Saturday, April 9, 2011
The Joy that Music Brings!
Dear Friends, If you have read this blog for a few years, you are aware that I frequently refer to music as helping me weather the storms of having cancer. In fact, it is a source of joy! I have quoted songs by Francesca Battistelli, Jeremy Camp, Matt Redman, David Crowder*Band, and others. Yesterday I found information about how and why music is so helpful to Christians. The new information is in the book Knowing God Intimately by Joyce Meyer copyright 2003 by Joyce Meyer. It is in chapter 10 "Ever Be Filled" with the Holy Spirit in the section HAVE A HAPPY HEART.
Joyce points out that some actions and some attitudes do NOT help us to be filled with the Holy Spirit. "Why not? Because the Holy Spirit is not negative in any way. His silence during such times is our signal that He is not pleased with our conversation.
When I feel the Holy Spirit being stirred up in me, I know He is pleased; when I feel Him receding, I consider that He may not be pleased.
The Holy Spirit is very fond of 'right' music--music that is encouraging, up-lifting, positive, and joy-filled--music that has a good message. In the last part of Ephesians 5:19, the King James Version says that we are to make melody in our heart to the Lord. That literally means we are to go through the day with a song in our heart...In fact, it is also spiritual warfare.
Satan is opposed to joy and will do all in his power to prevent us from having it. According to Nehemiah 8:10 KJV, the joy of the Lord is our strength. Satan wants us weak, but music stirs up our joy, and therefore, our strength. The more we sing and make melody in our heart, the better off we are."
Now I understand better why I was helped so much when all I could do was pray the songs by Casting Crowns and others as I drove to work everyday after my cancer diagnosis. I was increasing my strengthin the Lord. Plus, the Holy Spirit was pleased with me and spending much time in my company. Thank you, Father, for your strength and Your love.
Sharon
Thursday, April 7, 2011
My Most Recent Visit to the Oncologist 4/6/11
Dear Friends,
I was just at the doctor ( Dr. Z, my oncologist) yesterday where everything went well. My symptoms continue to stay minor. Oddly, I had gotten confused about the date of my Octretide injection and had come in a week late for treatment. However, I was fine. That was the first thing my doctor asked me about, did I notice any problems after going 5 weeks since the Octreotide? No, just a minor problem on Monday, for which I had taken one dose of Welchol. Doctor Z thought that was great.
Dr Z has become much more personable in the last two years. At that time he had told me very bluntly that I didn't need to ever hope for a surgery that would remove the cancer from my liver. Since the carcinoid cancer was in my bloodstream, it was everywhere in my body. How else had it gotten to my liver except through the bloodstream? I guess he wanted to make sure I didn't have any foolish notions that I could ever be cured.
Ever since I had known him, Doctor Z was so uncompassionate and unsmiling that I wondered if he had Aspberger's syndrome or another disorder that keeps him from connecting from people. He is a researcher at the university medical school where I am treated. He is in clinic only Tuesday afternoons and Wednesday mornings; the kind of schedule that would suit a very reserved person.
(My surgeon is totally different. He is outgoing and always has surgery students trailing after him. He is an upbeat guy who hoped to effect a cure of my carcinoid by resecting the duodenum even when my tumors were not visible. He knew an expert in endoscopic ultrasound could locate the tiny tumors in the operating room before the surgery, so the tumors did not have to be large. I went through the surgery, but unfortunately, the first tiny tumor had already metastasized to my liver.)
Yesterday Dr. Z asked about how I liked being retired, and I told him about how I am caring for my daughter now. I am driving her to outpatient services at a hospital associated with Loma Linda University. Each time I take Kay or pick her up, I drive 52 miles. Dr. Z was understanding, and said six months from now things will be alright, but it is hard going through it.
He understood about her condition and said what she is doing is quite normal under the circumstances. Before he left he shook my hand and wished me well. He said all the right things. It is as if Dr. Z has been taking lessons in how to relate to patients. Ironically, I had felt as I drove to the Cancer Center that my friends were not being supportive enough to me as I go through this hard time. I wondered why no one responded to me. Then, when I go to the oncologist, I get support!
God is good. One more time He worked behind the scenes to bring about a result that benefited me without my "helping" Him. My main lesson learned this week is that I can ONLY RELY ON GOD. No one else will come through all the time. Some people rarely come through for you, but God always does. Thank you, Father. I know how You love me.
Love, Sharon
I was just at the doctor ( Dr. Z, my oncologist) yesterday where everything went well. My symptoms continue to stay minor. Oddly, I had gotten confused about the date of my Octretide injection and had come in a week late for treatment. However, I was fine. That was the first thing my doctor asked me about, did I notice any problems after going 5 weeks since the Octreotide? No, just a minor problem on Monday, for which I had taken one dose of Welchol. Doctor Z thought that was great.
Dr Z has become much more personable in the last two years. At that time he had told me very bluntly that I didn't need to ever hope for a surgery that would remove the cancer from my liver. Since the carcinoid cancer was in my bloodstream, it was everywhere in my body. How else had it gotten to my liver except through the bloodstream? I guess he wanted to make sure I didn't have any foolish notions that I could ever be cured.
Ever since I had known him, Doctor Z was so uncompassionate and unsmiling that I wondered if he had Aspberger's syndrome or another disorder that keeps him from connecting from people. He is a researcher at the university medical school where I am treated. He is in clinic only Tuesday afternoons and Wednesday mornings; the kind of schedule that would suit a very reserved person.
(My surgeon is totally different. He is outgoing and always has surgery students trailing after him. He is an upbeat guy who hoped to effect a cure of my carcinoid by resecting the duodenum even when my tumors were not visible. He knew an expert in endoscopic ultrasound could locate the tiny tumors in the operating room before the surgery, so the tumors did not have to be large. I went through the surgery, but unfortunately, the first tiny tumor had already metastasized to my liver.)
Yesterday Dr. Z asked about how I liked being retired, and I told him about how I am caring for my daughter now. I am driving her to outpatient services at a hospital associated with Loma Linda University. Each time I take Kay or pick her up, I drive 52 miles. Dr. Z was understanding, and said six months from now things will be alright, but it is hard going through it.
He understood about her condition and said what she is doing is quite normal under the circumstances. Before he left he shook my hand and wished me well. He said all the right things. It is as if Dr. Z has been taking lessons in how to relate to patients. Ironically, I had felt as I drove to the Cancer Center that my friends were not being supportive enough to me as I go through this hard time. I wondered why no one responded to me. Then, when I go to the oncologist, I get support!
God is good. One more time He worked behind the scenes to bring about a result that benefited me without my "helping" Him. My main lesson learned this week is that I can ONLY RELY ON GOD. No one else will come through all the time. Some people rarely come through for you, but God always does. Thank you, Father. I know how You love me.
Love, Sharon
Wednesday, April 6, 2011
You can Rely on God
Dear Friends,
I have been listening to Jeremy Camp Cd's as I drive back-and-forth from home to Kay's therapy and to my appointments at the Cancer Center. It has been exhausting the last two days because I have been driving 150 miles per day to take both of us to our appointments and back home. I have found strength and favor from God, and encouragement from Jeremy's music.
When I started out on this journey I thought I might be driving closer to 180 miles per day, and taking 1.5 hours to go from Redlands to Orange, California. By taking the most direct freeways, the route was only 150 miles round trip, and I got to Orange in only 1 hour and 10 minutes. So conditions were not as bad as I thought they would be. I was driving between 7:50 am and 2:30 pm, so that helped me to avoid heavy traffic. God blessed me by giving me smooth sailing free of traffic jams.
One of my favorite Cd's is Restored by Jeremy Camp 2004. I have had the record for several years, and I have never put it away for even 6 months. Other Cd's get played for 1-3 years and are then stored in a Cd rack. I love the title song; it has lifted me up many times. However, Everytime, reaches me every time I hear it. It is all true.
Everytime I'm on my knees pleading for Your strength I will find You there, Find You there.
Everytime I'm on my knees reaching for Your strength I will find You there, Find You there.
To feel the crown of the One I have breathed for To know the door It will never be broken
Because I've found that time, this time, Has no hold on the rate that I need You! And I know it's never hard to find You.
I'm holding onto this hope I've been given To be always with You. I'm seeing now that this fullness of faith is Always seeking You
Another wonderful song is Enough from Carried Me, The Worship Project.
Thanks for your love, Sharon
I have been listening to Jeremy Camp Cd's as I drive back-and-forth from home to Kay's therapy and to my appointments at the Cancer Center. It has been exhausting the last two days because I have been driving 150 miles per day to take both of us to our appointments and back home. I have found strength and favor from God, and encouragement from Jeremy's music.
When I started out on this journey I thought I might be driving closer to 180 miles per day, and taking 1.5 hours to go from Redlands to Orange, California. By taking the most direct freeways, the route was only 150 miles round trip, and I got to Orange in only 1 hour and 10 minutes. So conditions were not as bad as I thought they would be. I was driving between 7:50 am and 2:30 pm, so that helped me to avoid heavy traffic. God blessed me by giving me smooth sailing free of traffic jams.
One of my favorite Cd's is Restored by Jeremy Camp 2004. I have had the record for several years, and I have never put it away for even 6 months. Other Cd's get played for 1-3 years and are then stored in a Cd rack. I love the title song; it has lifted me up many times. However, Everytime, reaches me every time I hear it. It is all true.
Everytime I'm on my knees pleading for Your strength I will find You there, Find You there.
Everytime I'm on my knees reaching for Your strength I will find You there, Find You there.
To feel the crown of the One I have breathed for To know the door It will never be broken
Because I've found that time, this time, Has no hold on the rate that I need You! And I know it's never hard to find You.
I'm holding onto this hope I've been given To be always with You. I'm seeing now that this fullness of faith is Always seeking You
Another wonderful song is Enough from Carried Me, The Worship Project.
" All of You Is more than enough for all of me For every thirst and every need You satisfy me with Your love And all I have in You is more than enough! "
Thanks for your love, Sharon
Friday, February 25, 2011
What is Happening Now
I have edited this from its earlier form to give my daughter more privacy. Dear Friends, For the last four days I have been encouraged by looking at this blog and seeing that many people have stopped to read it. Seeing the someone has looked here for help uplifts me.
It seems like readership increased as I sat in the ER with my daughter and my husband. My husband and I took her to the best place we knew of: Loma Linda University Medical Center. She was assessed in the emergency room. (You can schedule an appointment online to get into the ER there. I recommend it. Strongly.) She was referred to their facility nearby that is run by Loma Linda, and admitted. A young relative of mine had been there a few years ago, and says the staff will treat her well there.
Please pray for Kay and for us. Pray for wisdom, for healing. Pray the doctors will talk to us about what is going on. Kay is a very young adult, and I am waiting to see if the doctor has consent to talk to us. Pray for me when a 20-year-old staff member speaks to me like I'm not supposed to hear anything about my daughter. Her Dad and I brought her in, and are paying for her treatment with the insurance we earned by years of work. When we brought her in, the staff wanted to talk to us, because Kay wasn't much help.
For comfort, I turned to Philippians chapter 3. I used to read Philippians daily when I first was diagnosed with cancer. I remember when I prayed in 2007 that God could take my health, my daughter or my father to keep me in His perfect will. This is one way of losing my daughter.
"More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith,..."
It seems like readership increased as I sat in the ER with my daughter and my husband. My husband and I took her to the best place we knew of: Loma Linda University Medical Center. She was assessed in the emergency room. (You can schedule an appointment online to get into the ER there. I recommend it. Strongly.) She was referred to their facility nearby that is run by Loma Linda, and admitted. A young relative of mine had been there a few years ago, and says the staff will treat her well there.
Please pray for Kay and for us. Pray for wisdom, for healing. Pray the doctors will talk to us about what is going on. Kay is a very young adult, and I am waiting to see if the doctor has consent to talk to us. Pray for me when a 20-year-old staff member speaks to me like I'm not supposed to hear anything about my daughter. Her Dad and I brought her in, and are paying for her treatment with the insurance we earned by years of work. When we brought her in, the staff wanted to talk to us, because Kay wasn't much help.
For comfort, I turned to Philippians chapter 3. I used to read Philippians daily when I first was diagnosed with cancer. I remember when I prayed in 2007 that God could take my health, my daughter or my father to keep me in His perfect will. This is one way of losing my daughter.
"More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith,..."
Philippians 3: 8-9 New American Standard
Friday, February 11, 2011
Welchol works on Diarrhea
Hi,
This is not real pleasant subject, so I will just use the word one more time. From now on today diarrhea will be referred to as the d-word. I wanted to use it a couple times so that this might show up on a Goggle search. Many of my readers find this blog through Google, Ask or Right Health. D-word is one of the most frequent problems we have, so I wanted to have a separate post about how Welchol helped me.
Looking at some old posts from September to December, I wrote of being increasingly sick from the d-word. It started at two days a week and increased to daily. That's a very common problem with carcinoid, and I began to despair of ever being well again. I hadn't expected to become housebound so soon. I'm not even 60 years old--I have lots of things to do still! And I know some of you are 70 and sitting there saying the same thing. We want our lives to be full.
In November I had a regular appointment with my cardiologist (Dr. Chen) whom I see about 3 times a year. I told him about my symptoms, and he suggested I use Welchol. We had just gotten my "bad" cholesterol down to 80, and Welchol is used to lower cholesterol. He explained that it is a packet of resin beads that attract cholesterol, and the cholesterol passes out with the feces. It is not a drug that circulates in the blood stream. It also makes people constipated.
I used Welchol daily for the first 30 days. I would start to get d-word, mix the Welchol with water, drink it and wait. About 90 minutes later it seemed to have worked, and I could resume my activities. It would take about the same amount of time for Lomotil to work, and that is a drug that paralyses the intestines. Also, in weeks were I was having d-word daily, I could just use the Welchol in the morning and go out that day. I went through the first box of Welchol in 30 days.
It's February and I still have half of the second box in my home. It's ready in case I need it. I hope Dr. Chen isn't disappointed that I have not kept up using it daily. He wants my bad cholesterol down to 70!
The information on front of the packet is: Sugar free. Welchol (colesevelam HCl) For Oral Suspension. 3.75g. Citrus Flavor. Single-Dose packet. Each packet contains 3.75 grams of colesevelam hydrochloride. Phenylketonurics: CONTAINS PHENYLALANINE 48 MG PER PACKET.
Note: Welchol is gritty. It's not fun to take, but you can dilute it in 1/2 to 1 cup of water. Someone wrote me that you can put it in soda.
UPDATE 12/17/11
I am happy to report that Welchol worked well for me for 13 months. It would stop diarrhea for 10 -24 hours for me. This month, however, I noticed it only worked long enough on a Sunday morning to get me and my passengers to church and back home again. It was effective from about 8:30 am until 12:30 pm, but that was long enough to get to worship. I spent the whole sermon feeling lots of activity in my intestines, and hoping I could get home in time. I did get home, but was disappointed Welchol was not as effective as it had been.
Yesterday I was very ill from carcinoid. I went through three doses of Welchol and two shots (100 micrograms each) of Octreotide Acetate. Basically, I went through two whole cycles of emptying my intestines. The 2 Welchol and the first injection lasted long enough for my daughter to drive me to a doctor's appointment, rest and walk my beagle three blocks. Then shortly before bedtime, I was sick again. I took more Welchol and took the second injection. That was sufficient for me to sleep through the night. I'm still wearing a bathrobe today and sitting around the house.
I have more understanding of the carcinoid patients who talk about the unrelenting d-word. It seems like it will win in the end.
I hope this helps someone.
Sharon
This is not real pleasant subject, so I will just use the word one more time. From now on today diarrhea will be referred to as the d-word. I wanted to use it a couple times so that this might show up on a Goggle search. Many of my readers find this blog through Google, Ask or Right Health. D-word is one of the most frequent problems we have, so I wanted to have a separate post about how Welchol helped me.
Looking at some old posts from September to December, I wrote of being increasingly sick from the d-word. It started at two days a week and increased to daily. That's a very common problem with carcinoid, and I began to despair of ever being well again. I hadn't expected to become housebound so soon. I'm not even 60 years old--I have lots of things to do still! And I know some of you are 70 and sitting there saying the same thing. We want our lives to be full.
In November I had a regular appointment with my cardiologist (Dr. Chen) whom I see about 3 times a year. I told him about my symptoms, and he suggested I use Welchol. We had just gotten my "bad" cholesterol down to 80, and Welchol is used to lower cholesterol. He explained that it is a packet of resin beads that attract cholesterol, and the cholesterol passes out with the feces. It is not a drug that circulates in the blood stream. It also makes people constipated.
I used Welchol daily for the first 30 days. I would start to get d-word, mix the Welchol with water, drink it and wait. About 90 minutes later it seemed to have worked, and I could resume my activities. It would take about the same amount of time for Lomotil to work, and that is a drug that paralyses the intestines. Also, in weeks were I was having d-word daily, I could just use the Welchol in the morning and go out that day. I went through the first box of Welchol in 30 days.
It's February and I still have half of the second box in my home. It's ready in case I need it. I hope Dr. Chen isn't disappointed that I have not kept up using it daily. He wants my bad cholesterol down to 70!
The information on front of the packet is: Sugar free. Welchol (colesevelam HCl) For Oral Suspension. 3.75g. Citrus Flavor. Single-Dose packet. Each packet contains 3.75 grams of colesevelam hydrochloride. Phenylketonurics: CONTAINS PHENYLALANINE 48 MG PER PACKET.
Note: Welchol is gritty. It's not fun to take, but you can dilute it in 1/2 to 1 cup of water. Someone wrote me that you can put it in soda.
UPDATE 12/17/11
I am happy to report that Welchol worked well for me for 13 months. It would stop diarrhea for 10 -24 hours for me. This month, however, I noticed it only worked long enough on a Sunday morning to get me and my passengers to church and back home again. It was effective from about 8:30 am until 12:30 pm, but that was long enough to get to worship. I spent the whole sermon feeling lots of activity in my intestines, and hoping I could get home in time. I did get home, but was disappointed Welchol was not as effective as it had been.
Yesterday I was very ill from carcinoid. I went through three doses of Welchol and two shots (100 micrograms each) of Octreotide Acetate. Basically, I went through two whole cycles of emptying my intestines. The 2 Welchol and the first injection lasted long enough for my daughter to drive me to a doctor's appointment, rest and walk my beagle three blocks. Then shortly before bedtime, I was sick again. I took more Welchol and took the second injection. That was sufficient for me to sleep through the night. I'm still wearing a bathrobe today and sitting around the house.
I have more understanding of the carcinoid patients who talk about the unrelenting d-word. It seems like it will win in the end.
I hope this helps someone.
Sharon
Wednesday, February 9, 2011
New Data
I got the results back from my blood tests done in February. My Gastrin is 38, which is normal. My Chromogranin A is 1.0!
Yipee! Thank you, Father!
Yipee! Thank you, Father!
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