13 replies to this topic

[karenkelly34]

My 19 year old nephew was diagnosed with CML 2 years ago. He doesnt take his pills like he should and has been to the hospital a few times now with high WBC count. I don't get it! If i had cancer, i would do all i needed to do to survive. Has anyone else gone through this? He is in the hospital now because his count is 150,000. He keeps saying he learned his lesson and he will do better, but never happens. I know eventually it will get to the point where he will not make it out of the hospital. Any advice??  Thanks!

[HPL]

I'm sorry to hear what your family is going through. It is so true, when we have such wonderful drugs available, that work on a majority of us, why on earth wouldn't we take our medicine. I am by no means qualified to understand, but I would question if there is an underlying reason why.

Things to consider

• Depression
  
• Financial constraints
  
• Not able to remember or be organized with regards to medication
  
• Not understanding the medical risks
  

Just some of the things I would wonder, which could result in not adhering to the drug. I had my quarterly BMB as part of a trial last week, and Dr. Mauro's nurse told me that it's quite often that people don't take their drugs regularly, and she especially called out young men as being the worst in that category. So he's not alone, he just needs help to get back on track.

Best of luck,

Hans

Zavie's Club #1303

[karenkelly34]

Thank you for your response, i have a feeling it is a depression issue because he told his mother he knows the end is coming for him. Or he just doesnt understand what the outcome can be if he continues doing what he is doing. such a shame.

[Happycat]

I found an interesting graph (one of Dr. Druker's, I believe) that showed the difference in survival rates for those who adhered to treatment and those who did not.  It was quite motivating for me.  Something like 90-95% for those who took their drugs faithfully, but only 75-80% for those who were more sporadic.  I printed it out.  Been meaning to stick it on my fridge or someplace where I will see it everyday.

Traci

[Trey]

It is possible that he is not well informed about how treatable CML is with the TKI drugs.  He may have read those outdated internet sites that cause needless pessimism about a patient's long term survival, which can cause someone to feel like all is hopeless.   Suggest you might ask him to read the following:

http://community.lls.org/thread/2600

[Susan61]

Hi Karen:  First of all you should get your nephew to get on the computer if you can to our discussions, so he can see what is going on with the treatment of CML.  Let him see some of the knowledge we get from Trey, and read the different articles that he refers to.

               Apparently he does not understand what these TKI's are doing for people.  I will be starting my 14th year with CML in Dec.  He needs to know these things.  Maybe he does not like the side effects.   IT could be a multiple of reasons why he skips his meds.  How old is he?   Maybe if he knew that if he had been diagnosed many years ago that there were no TKI's like we have now.  Something needs to click with him.  You can only encourage him with different information etc.  I wish his family the best in trying to get him on the right track.

Susan

[HPL]

It may be worth pointing him to this site, or others that have connections with other CML'er. While of course nobody here doesn't take CML seriously, there is still a certain humor in some of the dialogs, when we complain about things that other cancer patients would long to have as their worst problems. Not saying that we don't have our share of edge cases, but in looking at the other 'Living with' sections, there is definately a different tone with this CML patient group. I am sure if he was willing to share his concerns, and his thoughts, he may change his view after getting to know the group here. Just a thought....

[Susan61]

Hi Karen:  I am sorry I just reread your post and I see your nephew is only 19.  This explains a little bit of why he feels like he does.  He is thinking he has no future to look forward to, therefore, just talk to him and give him as much information as you can.  He does not understand how these treatments work, and he could be the one to see the cure for CML in his lifetime.

Susan

[CallMeLucky]

Very challenging, young people sometimes don't take things as seriously, he may have a sense of invincibility that he goes back and forth with against the depression.. There is likely an element of denial.  He needs to speak to a professional.  It also may help to have him see a CML specialist.  If he understands that he is going to someone who primarily treats CML patients and knows what they are talking about, he may take them more seriously.

It is such a shame because he is giving the CML a chance to get the upper hand and it doesn't have to be that way.  I really hope someone can talk some sense into him.....

[LCasey]

I totally agree with everyone's responses. When you are that young, you really have a different view of the world- so he may be dealing with depression and also not fully understanding the pain he will go through if he continues to cease taking his medicine.

Another thought though- he may be dealing with some very serious side effects from the medication. If taking the medication is making him very fatigued or causing him pain, he may be less likely to take it. Especially if he is not really able to comprehend the ramifications of not taking the medicine.

Also, as a young person- I am sure he surrounded by peers who may not really understand what he's going through. He probably wants to be just like other kids his own age. I would highly suggest getting him involved in some kind of group for young adults with cancer. I know that LLS puts on a weekly chat for young adults with cancer. Hopefully there are other options as well. I think it would be really beneficial for him to speak with someone his own age who is going through this as well.

Best of luck to you and your nephew!

[helenet]

Hello HPL-- I noticed that you belong to the Zavie Zero club.  Any news on Zavie?  I have not heard any updates in a few weeks-- with Zavie having stroke like issues.

As far as the 19 year old nephew not taking his meds-- it has to be so difficult for a young man that age dealing with CML.  I have a 19 year old too-- I can't even imagine him dealing with this disease!

Encourage him by telling him he is a warrior-- and he has a duty to himself to take advantage of the incredible drugs available!  It is like someone very knowledgeable once told me when I was first diagnosed-- if they could pick a disease-- CML would be the one they would pick. Get him on this web site-- we will talk to him! 

[helenet]

He is a silly willy to think the end is coming-- get him on this website.  There are people of all ages that have this disease well under control. I personally have many many days when they don't even think of the disease-- I just pop my pills and go about my new normal!

[valiantchong]

Should take it daily, as the medical progress is goin forward, there is still hope getting around the desease, if one is lucky may be functional cure after 2 years as in the medical trial,... He should look forward for the future medical progress. Understand the depression, everyone will experience this, however the chances to live over a normal over 30 years (base on present doc estimation) is over 85% for Gleevec and now with second generation TKIs, the rate is over 90%. This are the things to look forward on the progress on the medication. Before 2000, we only have interferon which only cure 12% of the patients, there are records showed these patient are functionaly cured for over 20 years. Pls tell your nephew be positive, as in years to come there are better medicine, one day may be over 90% could be functional cure... Presently with 2nd Generation TKIs trial, there are 58% of patiant could be drug free for 2 years after achieve CMR... so. stay positive and adhere to the doc....

[Susan61]

HI:  You asked about Zavie.  He is still struggling, but fighting to get his strength back.  He is in a Neuro Observation Unit now to be checked to see if he has any other brain bleeds, and they will be doing another MRI on him.  He is very weak and sleeps a lot.  This was a update from his daughter.

I think all our prayers are  the best medicine he could possibly get right now, and I think all the Get Well Cards everyone has sent has encouraged him to get back with us if he can.  My heart goes out to his wife Ida and his family, this has been a very long stressful ordeal for them too.

If anyone does not know Zavie, and is reading this I just want you to know this had nothing to do with his CML.  He had a stroke a few weeks ago due to other health problems. Please pray for Zavie and his family.  He is always there for everyone else all the time to give them encouragement and positive thinking.  He is just a great guy.

Susan

I know this was off the main topic, but I tryed to send you a personal message.  Your mailbox is too full to receive any more messages.