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lindav

I've had Chronic Myeloid Leukemia for 3 yrs. Anyone else?

Posted by @lindav in Cancer, Jan 21, 2012

I've been trying to find someone that allso has CML. I'm in remission but need to take a chemo drug for the rest of my life. It has some side effects

Tags: Cancer, Leukemia, Chronic Myeloid Leukemia, cml

unicorn100 likes this
unicorn100

Posted by @unicorn100, Feb 3, 2012

Continue the therapy, my daughter was diagnosed with AML June 21, 2011 and passed away November 14, 2011. She was doing everything she should do but some medication that was given her when she coded in August, caused her to loose her hands and legs just below the knee. I pray that you stay in remission. God Bless You

lindav

Posted by @lindav, Feb 4, 2012

Thanks for sharing your daughters story. I plan on continuing the drug because it is the only game in town right now. This cancer has actually improved my quality of life. I stopped putting things off until later. I've started to do the things that were piling up on my bucket list. This lady is planning on getting her ears pierced this weekend. God Bless You Too

unicorn100

Posted by @unicorn100, Feb 6, 2012

Great!! Wear your best lingerie, burn the candles, drink the best wine and eat in the best restaurants. Let's stop putting anything on bucket lists.

lindav

Posted by @lindav, Feb 8, 2012

Isn't the internet amazing? This is the first time I've chatted with a unicorn.

unicorn100

Posted by @unicorn100, Feb 8, 2012

Yes. I use the name unicorn because that was my daughter's username. She collected unicorns since a small child. I never understood her fasination with them, but I guess things like that is what makes each of so individual.

lindav

Posted by @lindav, Feb 10, 2012

Unicorns are majical and we could all use a little majic in our lives some days. I think that losing a child is the greatest sorrow in our lives. You are very courageous. I go to see my doctor tomorrow. It is just for a 3 month check. I work in a laboratory so I have already seen my lab results. They are good. Hope you can find some joy in your day. LV

unicorn100

Posted by @unicorn100, Feb 10, 2012

I will be praying for you. I try to keep joy in my life. I work as a School Nurse and see a lot of children that simply need a hug and I have plenty of them. Losing my daughter has been very hard, she was also my best friend.
God Bless You unicorn100

lindav

Posted by @lindav, Feb 10, 2012

I had a good doctor visit. I got out of work 2 hours early....maybe that was the best part. I just love my doctor. He does a lousy bonemarrow aspirate but in every other way he is great. My GP really picked a good one for me. Actually I like my job too. I'm a Medical Technologist and I work in general testing doing blood cell counts, urinalysis and coagulation tests most of the time. I work with great people. They make me laugh. I have three sons and my husband and I both still work. We live in Davenport , Iowa right on the Mississippi River. We have been lacking in sunshine lately. Hope its sunny where you are . It helps. LInda V

unicorn100

Posted by @unicorn100, Feb 13, 2012

We are having a lot of sunshine here. The past three mornings we have been in the 20's for lows and up to 60's for highs. Wish I could package it up and send it to you. Have a great day today and every day. unicorn100

lindav

Posted by @lindav, Feb 17, 2012

Well we did get that sunshine. I guess your wish came true. Now you can wish for a winning lottery number. I went for a walk after work. It was a little windy but temperatures were in the 40's. I'm 63 and work 30 hours a week. I hope to continue working until I'm 65 maybe longer. When it stops being fun it will be time to quit. I was thinking that I should know what I would do with my time before I retire. My two sisters are retired and they seem to have lost the structure in their daily life. I don't know if that is healthy. I have 3 sons. One is married but I have no grandchildren yet. Bye for now Linda V

unicorn100

Posted by @unicorn100, Feb 17, 2012

Glad you got the sunshine. You truly do need to have a plan in place before retiring. My husband and I traveled for a while. We have been in all continental United States with the exception of three. Hope you have the opportunity to have grandchildren, they are truly Gods gift to us for surviving our children's teen age years. Have a great week-end. I don't know about you, but we will be having a 3 day week-end. I am looking forward to getting some much needed rest. God Bless unicorn100

lindav

Posted by @lindav, Feb 18, 2012

My husband and two of my sons have a three day weekend because they work for the federal government. I on the other hand work in a private lab. We don't get all of those miscelaneous holidays. I'm not working this weekend and I have alot to do. I'm going to Florida with my sister. We are driving and the first night we want to get to Memphis. I've never been there before. We are going to be staying in Tallahasie with my aunt and cousin. They are lots of fun. We used to travel with my husband when the kids were small. He would travel for work and we would go along. Once the kids started going to college we put all of our extra money into tuition, room and board. They are all out of school now. We went to California last year to see where my oldest son lived and worked. ANd now I'm going to Florida. It's that don't put it off anymore thing. My E_Mail address is lindav32@Yahoo.com. I've been looking at a website for CML. It is http://www.nationalcmlsociety.org. Did your daughter ever take Gleevec? That's what I'm on now. Thanks for taking the time to talk with me. LInda V

unicorn100

Posted by @unicorn100, Feb 23, 2012

No, my daughter was never on Gleevec. I pray that it works for you and others who are taking it. I enjoyed my three day week-end, I spent a lot of time with my grandson. He is 13 y/o and will be living with me begining this summer. I am looking forward to the time with some anticipation. I'm not sure I am ready to begin all over with a teenager. But I have to keep remembering that the Lord will not give us more than we can bear. Have a great day. unicorn100

lindav

Posted by @lindav, Mar 5, 2012

Hi I'm back from Florida. It's another culture down there. It was sort of like reading a book. It takes you away from your life to another place. WE came back to snow. I have another day off before I go back to work.
Is this 13 year old grandson your daughters son? You all have so many feelings to work through. I guess you can only do what you can do. I haven't met any perfect parents or kids yet. Maybe this is your chance to have do-overs and change what you think you did wrong the first time. Linda V

unicorn100

Posted by @unicorn100, Mar 6, 2012

Glad you had a good time in Florida. Yes, the South has a culture all it's own. I wish you could send some of that snow to Alabama.
Yes, the 13y/o is my daughter's only child. I can only pray that he is enough like his mother that he will continue to be a good child and become a wonderful young man. His mother was never the typical teenager, she never caused me a minutes trouble. She always lived her life so she could be a reflection of God, I was truly blessed to have her as my daughter.
I probably did make mistakes with her and her brother. Jeff, my son, was nothing like his sister. He was always breaking the rules. I guess one out of 2 is not to bad.
unicorn100

lindav

Posted by @lindav, May 20, 2012

Hi. This bad luck or just bad computer skills. I think I just lost my reply to you. I just got a new password because I lost the old one. Is your grandson at your house now? Linda V

unicorn100

Posted by @unicorn100, May 21, 2012

No, not yet. We are waiting until school is out. He will be out on May 23, I on the other hand have to go until June 11. After I finish and have a couple of days to rest we will begin the process of getting him moved and settled in. God has surely got something in mind for me, I never dreamed I would be 65 y/o and starting over. He is a very good young man, his mom did a wonderful job with him and I am proud of both he and his mother.
Hope all is well with you.
unicorn100

unicorn100

Posted by @unicorn100, Feb 13, 2012

We have had plenty of sunshine. The last three days we have had morning temperatures in the 20's. We don't get much snow here. Most of the time it only looks like a heavy frost. I work in the public school system as a school nurse. I spent my career in the doctor's office and retired in 1999 to be with my new grandson. My husband and I traveled for a few years but when we could no longer do that I returned to the work force and I really enjoy the children and the teachers that I work with. I am 65 years old and in pretty good health except for some arthritis and needing a knee replacement I do pretty well. Take care. unicorn100

lindav

Posted by @lindav, Feb 8, 2012

Isn't the internet amazing? This is the first time I've talked to a unicorn.

sjackson1

Posted by @sjackson1, Feb 9, 2012

Hi Linda. I sent you a 'friend request' so that I could inbox you. My 22 year old son also has CML, and I know a place where you can connect with a lot of others who are living with CML.

lindav

Posted by @lindav, Feb 10, 2012

Wow. 22 is pretty young to get CML. I'm so sorry. Thanks for texting me.. I just haven't had much luck finding other people with CML. I guess that could be a good thing. I wouldn't wish this on others. My doctor says that CML is the best leukemia to have because of the drugs that are available now. Is your son in remission? Hope so. I found my CML early. I work in a Medical Lab and get blood drawn for new tests and normal reference range studies fairly often. So I found the change in my blood cell count myself. I look forward to hearing from you. Linda

missvee42

Posted by @missvee42, May 21, 2012

I've had CML since 2007 ,taking 800mgs of gleevec daily ,also dealing with RA and fibromyalgia.I believe i contracted CML from taking enbrel injections for 5 yrs for the RA.I deal a lot with severe muscle cramps ,but lately they're getting worse ,hitting me in the ribs and cutting off my wind.DO you have any trouble like this?

lindav

Posted by @lindav, May 27, 2012

Thanks for telling me your story. Has taking 800 mgs put you in remission? You are climbing a big mountain. I don't really have muscle cramps.. maybe just a few. I have been haveing fatigue. My Dr. doesn't think it's the Gleevec because I'm just taking 300mg a day. He wants me to get blood work done for my thyroid and a B12 test also. I don't think either one of those is the problem. Maybe it's just getting older or maybe it's depression. NO easy answers. You must hurt all the time. Are you taking drugs that keep you comfortable? Most of the people I've talked to that have CML seem to have more problems than I have. Hope you have a good Memorial weekend. I had to work today but I have Sunday and Monday off. Linda V

missvee42

Posted by @missvee42, May 27, 2012

I messed up ,I only take 400 mgs of gleevec ,i don't know what I was thinking.
I take half in the am and half in the pm.
THey won't say I'm in remission just that it' keeping me stable.Since I'm the only CML patient she has ,I'm thinking I should drive to Indy where they treat more cases ,so i'll have others to compare myself with.I've fought the ra and fibromyalgia since 87 ,so all of it together keeps me pretty drained.I just turned 70 and took a trip to israel ,so I'm blessed in so many ways ,i don't need to be whining .It would feel good though just to have a few days pain free and have some energy.i'm glad you're doing well.Sandy

lindav

Posted by @lindav, May 31, 2012

I'm 63 and work 30 hr a week. I work in a laboratory. I found my CML myself. I live in Davenport Iowa and my Dr has 8 CML patients. I have never met any of them. Only one more day to work before the weekend. No plans. I'm just not going to get up early or go to work. I don't do much extra. I started taking an art class once a week with my sister. I enjoy working with clay. The people are nice and the instructor is hot. I also belong to a book club with the people I work with. I read a lot. Are you able to do some activities that you enjoy? Hope you have a restful weekend too. Linda V

missvee42

Posted by @missvee42, Jun 1, 2012

Linda ,i'm pretty active in our church .When I lost husband in Sept of 2010 ,I was totally lost .We had been married for 52 1/2 yrs ,i didn't really know how to function without him.But with the help of my Christian friends and family ,i'm learning new skills ,i never thought I could do.
I have to go for more blood tests tomorrow to have my muscle enzymes checked ,if i heard her correctly and i seem to be running anemic again and low calcium.
i do pretty decent most days just have to pace myself and not over do.
The weather affects me horribly ,i feel like my life is totally controlled by the barometer ,and it's raing her today.
Planning a trip to Amish country saturday with friends .Glad you're doing well ,Sandy

lindav

Posted by @lindav, Jun 4, 2012

Good Grief! You replied at midnight. Do you usually stay up that late? I only stay up that late on New Years Eve or if someone is in the Hospital. Hope you had a good day in
Amish country? We have Amish in Iowa too...about an hour away. I'm sorry you lost your husband. My husband had a bad stroke about 5 years ago. He worked hard to recover and go back to work. Now that I have CML he will probably out live me. I have my art class tonight. Its very relaxing. I got home from work and made dinner for my husband and one of my sons. I need to leave in about 30 minutes. I have 3 sons. The youngest still lives at home. He graduated from college and is looking for a job. I have two sisters that I see a lot. One lives here in Davenport and the other about an hour away in Iowa City. They are both retired. My mother died just a few months before I was diagnosed with CML.. I might mow the lawn later this week. IIt's good exercise. Hoping for good weather for you. I had blood work done on Friday. Everything is still good. Hope you find the same. Linda

missvee42

Posted by @missvee42, Jun 4, 2012

Midnight is real normal for me .I worked 2nd shift at AT&T for years and it's hard to break the habit.i have my drs appt tomorrow and all of my blood work .My GP thinks the reason I'm feeling so rotten and muscles aching is because after you're on a chemo drug very long you become toxic ,so we'll see what my oncologist thinks.i just don't know anyone else on this drug ,so I don't have anyone to compare it with.I have 3 kids ,2 girls and a boy 5 grandkids and 41/2 grt grand kids.Youngest girl is in NY and the other about 4 hrs away.My son lives about an hour away .I have a lot of good friends and neighbors that have really helped me out a lot.
It's been really dreary here today and a little rain that was much needed.Hope you stay healthy ,that's more important than wealth ,Sandy

lindav

Posted by @lindav, Jun 17, 2012

Happy Fathers Day! I think women do more "men jobs" than men do "womens work". Today is also our 34th wedding anniversary. I had to work yesterday so we are staying home today. My sister is going to take us out for dinner. I found a couple of books that my husband wanted to read. I buy myself presents alot. How was your Dr appt? I think my next appt is in August. We are going to have a potluck at work to celebrate the start of summer this week. We had book club last week. Do you read much? I do. The kids have called today. Its nice to know that they are all OK.. My knees have been achey lately. I never know anymore what is causing symptoms. I think a lot of it is old age. I forget I have CML. We had some great rain yesterday. It has been dry. Hope this finds you having a great day. Linda .

paterson4646

Posted by @paterson4646, Dec 7, 2012

Please dont let them use chemo or radiation will cause other cancer

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