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Posted by @lauriel in Cancer, May 7, 2012

My 21 year old son was diagnosed with CML a year ago and we are all coming to terms with having a child with a cancer with really no "cure".... he is on a daily medication called Gleevec and seems to be having very few side effects to date but I am worried for his future... is there anyone else who is dealing with this somewhat rare type of leukemia?

Tags: cml

LindaV likes this

Posted by @lindav, May 20, 2012

I just posted on the Mayo site. I don't know if you will see that or if I need to reply here. I wish I had better computer skill. I'm on Gleevec too. Most of the people I've talked to on line seem too be a lot worse than me. It makes me feel whiney to complain. I am glad that it's me that has CML and not one of my sons. I'm so sorry for you and your family. Linda V

LaurieL likes this

Posted by @lauriel, May 20, 2012

Thanks for your reply - how long have you been taking Gleevec? Have you been having many side-effects? Does your oncologist discuss long term prognosis?


Posted by @sasylpn, Jun 8, 2012

I have been on Gleevec for 6 years. I have a few side effects but am in complete remission so I can live with those. They are making great strides in new medications for CML. he is very lucky if you can think that way, in that there are worse cancers to have. Better not to have any. There is also National CML society, LLS. Org and Facebook CML groups that can be very helpful to him. I am 60 and have learned more on the Facebook groups than any other. Knowledge is power is my best advice. He will do great and live a long life 🙂 hang in there Mom we are all in this together

LaurieL likes this

Posted by @lauriel, Aug 27, 2012

Thank you for your thoughts..... this is surely a lonely road as neither my husband nor son want to discuss .... and I don't feel that anyone else really understands the worry... of course there are many worse things, but my son has been also been dealing with depression over the past few years, so all in all, things don't seem so bright at present.... he is not well enough to continue at school for now.... just sleeps most of the day.


Posted by @sjackson1, Jun 12, 2012

Hi Laurie - I have a 22 year old son who was diagnosed with CML at 17. I'm happy to hear that the Gleevec is working well for your son and that he is having few side effects. My son did not have a good response to Gleevec and is currently in a clinical trial for a new drug called Ponatinib. Have you had much contact with others in the CML community?

sjackson and LaurieL like this

Posted by @lauriel, Aug 27, 2012

Hi.... I have had no contact with others in the CML community.... the oncologist said there are only a few other people in our area with this disease.... Thank you for your post -


Posted by @patsyb1, May 24, 2016

Trying to get an appointment with Mayo Clinic to seek help fighting this disease besides just chemo-therapy. Can she be seen with Prestige Insurance? If not what other resources are there to help her see a doctor for a second opinion. We are running out of options, we have been fighting this for five years now.


Posted by @colleenyoung, May 24, 2016

Welcome @patsyb1. Connect is an online community where people can meet other patients and caregivers, and share information and experiences. I moved your message to this discussion thread. While it is older, I'm hoping that the members like @lauriel @lindav and @sjackson1 sharing here will return to support you and your daughter

For information about getting a second opinion and insurance options, please contact the appointment office. The contact information can be found on this page

In the meantime, we're here to listen Patsy and we look forward to getting to know you. What treatments has your daughter already had?


Posted by @patsyb1, May 24, 2016

So far, Gleevac, Sprycel, and three others. Her body has rejected all of them, and being the only child she would need a stem cell donor. The doctor said though, with her having almost every side effect of these drugs, she is not a good candidate for a transplant. Last month with her call and begging every day to the hospital she was unable to get her medicines for five days. She is suppose to take it every day without fail. So they double dosed her, then her heart started skipping and she was deathly ill. Then they took her off all medications for several weeks and now, started her back on Gleevac. It is like we are at square one again. So depressed and feel hopeless.....


Posted by @colleenyoung, May 26, 2016

I hear you @patsyb1. As a mother we just want to take the pain and suffering away. It's not right. I'm tagging @irvkay312 on this conversation. She doesn't have the same diagnosis, but understands the search for hope in the midst of tough times.


Posted by @irvkay312, May 26, 2016

Relative to your cancer, one of the things we all have to realize "is the difference in our body systems in its relation. I've had Islet Cell since 2009 and with my awareness lessened a lot of worry. Yes, I had chemo for two cycles, targeted chemo for a total of 15 cycles and 28 radiation cycles preceeding the chemo. I've sought to understand my body changes over each segment of this disease. First. I had bone pain; was this a part of it? Yes, it was--so I set it aside and sought to live my life as comfortably as possible. Walking often helped remove such pain, possibly through circulatory or new cell growth. Next, came flank pain in the area of the kidneys. It developed Chronic Kidney Disease from the chemo. Most of those times I would change my body position and others I'd have to take 1 tab of Oxycodone for. Insofar as recent thigh pain, I attribute that to "muscle wasting" due to the loss of glucose and inability of ingested proteins, etc. to rejuvinate their respective body systems.

Insofar as Migraines which I've had since 13, their control of pain came from learning what initiated them; being able to change course during one by doing something I'd enjoy--thereby taking my mind off of the pain along with checking my blood pressure at peak pain times. That proved "that maintenance of blood pressure control could also play a role in triggering pain neurologically.



Posted by @irvkay312, May 27, 2016


Well, I've come to learn and believe that a lot has to do with our
individual systems in their dealing with known an unknwon cancers and their
treatments. I have had and still have Tuberous Sclerosis in my body and on
the brai nearly all my life. It's a rare form of cancer But it's
BENIGN--even so here treatment is to control the symptoms because there is
no cure. Example: "I've lost certain mental abilities due to this, but
learned through research that regular excercising of the brain could
possibly help to make some of the problems more managable.; much like
working to try and rerrogram certain brain resources.

On the other hand, in 2009 I was diagnosed with Islet Cell Cancer. I went
through radiation, chemo and a newer treatment to try and slow down the
growth of tumors by injection for that site. I went through two injections
and called it quits, due to the harshness of the adverse affects from the
medicine. In essence, I was given about 5 years at the time of diagnosis.

Yesterday, I had Hospice consultations and am in the process of beginning
it. However "the most important item to me and determining factor was 'to
mainatain as full a quality of life that I could manage' so that's what
stands for now. My point has been to get ample rest and relaxation, remove
stressful facets of both diseases (which can often counter physical or
mental pain), remove as much stress, frustration, worry ,etc from your life
and do what you are most comfortable and happiest doing one day at a time."
As I told the consultants yesterday when they asked about daily and weekly
plans, I said "I make no plans beyond what I desire to do tomorrow, so that
if I can't do those things I don't feel sorrowful or depressed." Ihave
tried to live my life to this point of 77+ years through 3 principle
factors--"Faith, Hope and Perseverance."

Good luck in your confrontation.


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