14 replies to this topic

[vickicorinne]

Dylan diagnosed Jan 2010 with CML was expected to reach remission also known as 100 % MMR (major molecular response)

by January 2011. During Dylan's journey he had a lot of ankle pain and his walking was very different. We requested a MRI and

low and behold he was diagnosed with AVN in October of 2010 . We took Dylan to Texas Scottish Rite

Hospital in October had the 2 nd MRI and got the confirmed diagnosis. The doctor  said we would do surgery

after the oncologists cleared him to do so. FAST FORWARD .. Dylan had AVN surgery on March 20, 2012.

He wore a spika cast until May 14 th and was non weight bearing the whole time. Dylan went for a follow up

appointment On Monday July 14 th and we were told he has all new bone growth and the surgery was doing well.

Dylan goes in on September 18 th to get all his hardware removed. Dylan is now able to toe touch. We are told

March of 2013 he should be able to resume all normal activities. Do any of you have experience with this ? We want a normal life for him  walking and sports. He has been wheel chair bound going on 2 years. Did a diet change help continued bone growth? What are your thoughts on GLEE VEC and glucosamine ?

What are your thoughts on extra calcium and Glee VEC? Do you limit your child's carbonated drinks cokes ECT and such!

Do you limit candy and foods with a lot of sugar ? Any help is greatly appreciated. What are your thoughts on

Sugars and cancer .

I love LLS and I look forward to our days together sharing and helping each other.

Can pictures be loaded on this site I have before and after AVN pictures.

Thank you

Vicki

[Sneezy12]

Sugar intake and carbonated drinks have nothing to do with  CML, any other type of cancer, or AVN. Check with drugs.com for drug interactions, and read the last few issues of the "Tufts Nutrition Letter" re Calcium intake. Regards, Frank

[GerryL]

I continue to take glucosamine and also a calcium, magnesium & vitamin D supplement. I take them at the opposite time of the day to when I take the Gleevec.

Something you might be interested in when talking to Dylan's doctor http://www.ncbi.nlm....pubmed/22378641

[markmendonca]

what is AVN i have a lot of pain in my knees ankle's and my hip's ...i have been on tasigna for a year now and i am 43 years old....

[lehrerin]

sent you a pm.

[vickicorinne]

Thank you Sneezy

[vickicorinne]

Gerry thank you for your Reply  I will post and take with us next time Thank you

[vickicorinne]

I replied by email I could not get a message sent I tried 3 times . It's  because I'm not sure how to navigate the site yet Im sorry

[vickicorinne]

Mark HI '

AVN is Avascular Necrosis it is dead bone to simplify it for you.  It is a side effect of the GLEEVEC . If you are having pain please get a MRI and bone density test. How long have you been taking Gleevec ? How are you doing on it ? I love  other CML stories . Dylan takes 400 MG . I'm new to LLS so please be patient with me . I'm not new to the web I'm just not sure how to navigate the message system here yet haha!

Mark how is your diet? Do you think that could cause the pain? Lack of potassium ? I look forward to hearing from you. If your story is already here please send me the link.

Blessings

Vicki

[SunNsand]

I wish your son a quick recovery so he can get out of his wheelchair soon and do all the fun things boys like to do.

I did not know AVN was related to Gleevec. I have an AVN but I am 54 and I've had various bone issues since my teen years. I just assumed it was my bone health history.

[Sneezy12]

Will you please list any non-anecdotal, published scientific studies indicating that AVN is related to Gleevec? Thank you. Regards, Frank

[GerryL]

Hi Vicki,

I know you can't receive emails if you have more than 5 messages in you mailbox (includes received and sent), I'm not sure if this also applies when you are trying to send something.

[vickicorinne]

I apologize I do not have anything documented on AVN AND CML if I have mislead anyone I'm very sorry. This was not my intention at all. Im trying to learn and I only know what my sons doctor has said . They did not say that GLEEVEC and AVN were related but they did not say it was not related. My sons situation has been put into a data base and they are watching him closely with tests and MRIS . Our next appt is September 18 th I will keep you all posted ! AVN and CML was mentioned as my son had no prior issues. He had baseline tests Including a MRI OF THE HIP Jan 23,2010 with no sign of AVN . In October 2010 the bone was so dead in his  hip we immediately did surgery to preserve his leg.

[SunNsand]

Ahh I understand now. I sincerely hope things turn around for your son. No child should have to deal with cancer or any other serious medical issues. Keep us updated!

[Sneezy12]

Thanks for the clarification. Regards, Frank