6 replies to this topic

[azteri]

I was diagnosed with CML in March of 2009 and have had great results with Gleevec. I went into remission within 9 months. Now it's it's just a bit of a pain in the but. Most of the side effects have passed and what's left are minimal. I check in here from time to time, but mostly like to forget I have CML since it's possible to do now, except for the daily taking of the pill. I also participate in the Thursday evening chat board sponsored by LLS.

I recently self-published my first novel and I'm working on the second which is centered around a young woman named Julie who is diagnosed with CML by chapter 3 or 4. I'm thinking I might want her to have a Stem Cell Transplant. As someone in her 50s, my onc hasn't mentioned that as a treatment option. I'm wondering if anyone who has had a Stem Cell or Bone Marrow transplant would be willing to share your experience about the procedure, the impact on your life and those of people close to you, your emotional journey, etc. It won't be the focus of the plot, but an important part of her journey and that of the man who wants to marry her. I want the treatment of this topic in my novel to factual and realistic so as not to misguide anyone who may find themselves in the same situation, in addition to informing the casual reader.

If you think you would be interested in sharing your story, I'd appreciate it. You can respond here and we can make arrangements to share here or any other way it would be comfortable for you. Men are welcome to respond, too, since I assume the process is the same for everybody.

Thanks for your interest, and I look forward to hearing your story.

[WoofWoof]

I haven't done a BMT but have read several articles & blogs of those that have. This is a good start: http://www.cmleukemi...transplant.html

and of course Treys' post: http://community.lls...e/101557#101557

[Emeline]

I had a BMT in August of 2011 to treat CML. I would be willing to share my experiences with you. Although, I don't know how helpful I will be since some of my memories are a little fuzzy. Also, I am married and have 2 small children, so I am not exactly like your character, but you may find my experience helpful in some way. Let me know if you are interested....

[azteri]

Hi Emeline,

Thanks so much for your response. I'd be very interested in talking with you. We can do it several ways, whatever you are comfortable with. You can simply share your experience here, or I can share my writer's email address and you can send your writing there. Or, I can compile a list of questions to answer or I can call you and we can chat. I don't want to be any nosier than you're comfortable with.

Here's a little of what I'm thinking I'd like to know: Some of your emotional responses, such as to being diagnosed, the impact on your future, being informed of treatment options. How it impacted your day to day life and your image of yourself. How you decided on the BMT and what you had to do to prep for it. How were friends and family supportive? Do you feel they changed toward you in some way? Your experiences in the hospital and with medical staff. And anything else you want to share. Things you might think are irrelevant may be exactly what I need. The clinical info is available online. What I really need are the personal stories. Readers love an inside look at things they don't experience first hand.

Please understand that I may or may not use anything you share and/or it could be mixed in with information I obtain from other people so it probably won't exactly reflect anything you tell me. If you like, I can mention you in the acknowledgment section and provide you with a copy of the book when it's published. Also, please understand there is no payment of money involved. Unless it become hugely popular and we appear on talk shows together. (It's a dream most writers have.)

Following is the link to my website I maintain as an author. On the right under the book cover picture are links to where my first novel is available for purchase. If you click the kindle or smashwords, you can download excerpts you can read on an ereader or your desktop. The Contact Me tab provides links to other online places where you can check me out as much as you like. Also there is a tab with a link to my blog that I update semi-irregularly.

https://sites.google...uthortamunroe/

and here is my author email:

twritemunroe@gmail.com

Of course, anyone else who reads this can use the links above to either check me out or contact me relative to my request for information.

I appreciate your response, Emeline and any time and help you might care to give me. I hope you are doing well.

Theresa

[cousineg]

Hi Theresa,

     I don't know if you've already read this book: Surviving Leukemia: A Practical Guide by Dr. Robert Patenaude

           '' In 1982, Dr. Robert Patenaude was diagnosed with CML. This book is the moving first-hand account of his experience. From the first shock of hearing the diagnosis and the anguish of his hospitalization, to chemotherapy and a bone marrow transplant, the author gives a painfully frank description of his experiences and shows the incredible survival instinct that helped him beat the disease.....''

 

Sincerely Gilles

Other links: Bone Marrow and Stem Cell Transplant Survivors Club (Facebook)            
                     BMT for CML

[gerardtn]

I'd be glad to share my experience with you. At 54 I was diagnosed with AML (summer 2010). Two rounds of chemo put me in incomplete remission with no blasts, but no functioning marrow. In November 2010, I received my oldest brother's stem cells. I have been in remission since. It has been an incredible journey. Hard to know where you would like me to start. I know what happens in a stem cell ward. Met lots of people. Some who were there for second transplants. Let me know what types of questions you would like me to answer. My recovery after transplant was slow and my doctor worried I was not engrafting. Thank God I was and am now without my own DNA. My transplant took place at MD Anderson Houston.

[gerardtn]

I reread your two posts and now have some idea of what you want.

Let me start with my emotional reaction. I have five children. Two were still living at home. I went to the doctor in June 2010 to find out why I had chest pain. I thought it was a pulled muscle. I did not want to go because I was leaving in three days to see my grandson baptized. It was a trip the whole family had been looking forward to. I went to a doc in the box hoping to get a pain killer and by the end of the day I was hospitalized with a diagnosis of leukemia. What a shock for my wife and I. The trip was off and I thought I might be dying soon. I got discharged from the hospital and went home to await a definitive diagnosis. My wife and I spent the weekend in tears. The children went to the baptism and we put off telling them. I have never known such fear. Afraid for myself and especially for my youngest daughter. She was to graduate in two years. Would I be there? My second son was graduating from med school in May. Would I be there? Would I see my daughter who was a sophomore in college graduate. Would my illness or death be so devastating to them that it would impact their life goals.

If this is what you are looking for, advise

As it turns out, my disease has been a blessing to us all.