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Posts posted by Dragonmew

  1. Hi Tom,

    I want to let you know that my mom has the ct scan this morning, and dr just sent the results - stable! The discomfort from leg is caused by surgery or radiation or the rod itself.  No new cancer is growing over there. I’m so happy with the result.




    Thank you Tom for your timely response.  I will discuss further with the oncologist and keep you and the forum posted.

  2. Hi Robert and MarieE,

    I’m new to this forum.  I want to let you know that my mom is on tabrecta as well.  She started on 6/15.  She seems well with it.  The only side effect is some small rash.  However, the oncologist is thinking it may not be strong enough, because my mom still feels some discomfort in her right leg that he thinks it might be from cancer growing or muscle recovery from the hip replacement surgery in February and radiation in March.  I’m hopeful her discomfort is due to the later one. We will know from next ct scan in about two weeks, and I’ll keep you posted. 

  3. Hi Catlady,

    I feel for you.  My mom just diagnosed in February this year due to a fracture.  Since then, I researched and googled and got so sad by what I have read...My mom is at stage IV with the very rare mutation of Met 14 skipping. Before the result of biopsy, the oncologist was hoping her mutation to be EGFR, the most common one with many choices of targeted drugs.  My mom is currently on Capmatinib and she seems well with it, but I can’t stop thinking what’s the next?  What will be 2nd or 3rd line treatment once the cancer cell stops responding to it?  I could Only find very few information regarding this mutation From online.  Like you, I thought my mom would live around 100 ( now she’s only 68). She was such a healthy person before that fracture.  I can’t imagine my life without her...

  4. My mom aged at 68 was a healthy person. All of sudden she had a fracture in hip and a compression fracture in spine February. Later, after the CT scan, she was found a 3.5 hilar mass in the right lung together w other nodules in both lungs. Immediately my mom got a surgery to fix the hip on 2/13, and during the surgery biopsy was obtained. She was later treated by xalkori due to her met 14 skipping mutation.  Her ALT and AST were elevated due to xalkori, and doses were reduced until June when the ct scan found tumor in left hip has grown from 1 cm to 1.6, although the 3.5 Hilar mass as mentioned before was shrunk (it grew to 4.1 from PET scan). Dr switched her medicine to Capmatinib.  She has no serve side effect on Capmatinib except some rash.  She is still feeling some discomfort from her right leg, and the dr is worried Capmatinib may not be strong enough.  The main concern is if her discomfort in right leg is from cancer growing or muscles recovering from the surgery and radiation.  

  5. Hello all,

    this is my first time posting a question in this forum. I would appreciate your time for reading it and giving me your thoughts if you could. 

    My mom was first diagnosed as adenocarcinoma metastatic to bone in February when she had a fracture in her right hip. A hip replacement surgery was done right away, and 5 day radiation was done after about 3 weeks from the surgery.  Then she was on xalkori for Met 14 skipping mutation.

    She had a CT scan when evaluating xalkori in June, and that scan shows main tumor in lung was reduced by 70% in volume, and tumor in spine is stable.  However, they also found some increased sclerotic lesion in her right hip, and the tumor in her left hip was growing from 1cm to 1.6cm.  During that time the doctor couldn’t determine if the sclerotic lesion in right hip was caused by cancer or bone strengthening injection.  He said bone healing and cancer growing are somewhat Looking similar.  So he decided to switch to Capmatinib for her, treat left hip by another 5 day radiation, and give right hip some time to see if it can respond to Capmatinib well.  In addition, my mom will continue the bone strengthening injection every three months. By that ct scan, she had done one injection.

    After about 5 months from the replacement surgery, my mom’s main complaint is weakness of the leg, and she feels she’s having difficulties to bend the right knee. However, after walking for a bit, she feels better and can walk normally. Right now she can walk without any supporting tool. X ray has shown thigh area and knee area are fine. The doctor is worried about Capmatinib is still not working as well enough as he thought, although he also said the discomfort could also be caused by the muscle which is still recovering from the surgery (done on 2/14/2020). He suggested another ct scan in two weeks.

    My question is: can next ct scan differentiate cancer growing and bone healing? If so, why the previous one couldn’t tell? If not what other scan will tell better? Pet scan? I asked this question to the doctor, and he says “let’s see the ct scan first and go from there”.  He thinks the ct scan will give the answer.  The ct scan will be in about two weeks.


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