29 replies to this topic

[catlvr]

My sister was dx with CML back in mid 2002. Since Sept. of this year she stopped taking her Sprycel. What's the life expectancy of someone who has no treatment of anykind for cml? thanks

[Goldfinger]

What a horrible way to die.....

[Marnie]

Why did she stop her Sprycel?  The disease will progress without TKIs.

[Trey]

It depends on how well she was doing when she stopped drug therapy.  If the testing (PCR) could not detect the leukemia before she stopped, then she could go for months or possibly years before the leukemia reappears.  A few have stopped drug therapy and remained undetectable for CML for several years.  I want to emphasize that these people were undetectable for leukemia for a couple years before they stopped taking CML drugs.  But stopping drug therapy should only be done with close monitoring by the Oncologist.  A better option for your sister might have been to lower the dosage, and she should ask her Onc about that.

So it depends on how well she had responded to drug therapy when she stopped the Sprycel.  Ask her if she was undetectable on her PCR, and why she stopped.  Someone who has been taking drugs since 2002 may just want a small break to feel like she has some control, and to feel a sense of normality.  I assume she would re-start drug therapy if the leukemia becomes detectable again.  Even so, there are clinical trials where people stop CML drug therapy, and she would do better (and possibly help others) if she participated in a drug cessation trial under close supervision.

If she has "given up", or she was not responding well to drug therapy when she stopped, then this would be a real problem and survival would be threatened.  But otherwise she should be OK over time as long as she re-starts drug therapy at some point.

[catlvr]

My sister know's she will die without the medication. She's been on Sprycel since about Aug. 2007 and Gleevec before that. Stopped Glevec therapy as she became immune to it. She always had an excellent response to the Sprycel. She want's to die she say's. Just tired of having the leukemia for almost 9 yrs. Nov. 5th her wbc was 8,800 which is still normal. Dec. 2nd it shot up to 136,6000 and Dr. said at that rate she would hit 150,000 in a few weeks and go really down hill. Well she must of never hit 150,000 cause she didn't get real bad just tired a bit more. Dec. 23rd she saw dr. cause she was wondering why she felt so good. Wbc went down to 122,000. Dr. said she could of leveled out temporarily and the wbc could go back up again. I don't agree with my sis's decsion but I still support her and will stand behind her. I'm wondering what the end stages of cml are what we as a family can expect to happen as she progresses worse. Thanks

p.s. why do I have a bowling ball as my picture.. I didn't chose a picture at all just the avatar of a cat. weird..

[Marnie]

Hi, Catlvr. . .yeah, your bowling ball doesn't match your name very well.  My cat isn't much interested in bowling. . .he's curled up on the radiator soaking up heat right now.

Sorry to hear about your sister's decision.  I've been pretty lucky with only minor side effects from Gleevec, so I've been able to maintain a pretty nomal lifestyle enjoying the activities that I did before diagnosis.   I hope your sister changes her mind, but I guess it's up to her.  I don't know what you can do except be there to listen when she needs it.

Good luck to you and your sister.

Marnie

[Trey]

If she is very old, that is one thing.  In her current status she probably has less than a year as the WBC goes up and down while the body fights to keep it under control.  But it is a losing battle.  If she feels good right now, she better enjoy it, because that will be gone very soon.  End stage CML is not pretty.  It is a slow process of leukemic blood cells crowding out the good blood cells.  The body fights for oxygen but there are not enough red blood cells as the leukemic white cells take over the blood.  The fatigue will become debilitating.  The body becomes more and more susceptible to infections and viruses.  The organs eventually starve from oxygen deprivation.  Death usually comes from organ failure, or if lucky, from a fast moving virus such as pneumonia.  Otherwise it is slow and painful, but maybe even more painful to watch.  There are less painful forms of suicide, but all equally selfish.

[Marnie]

Yeesh, Trey. . .that's the one question I have not been willing to ask.  Thanks for TOO MUCH INFORMATION!!!  Gahhhhhh!!

(maybe that's when my Kimber comes in handy)

Marnie

[CallMeLucky]

Hi catlvr

I understand you wanting to respect your sister's wishes, but she may not be thinking clearly.  I don't know her situation, but some general observations would suggest she is depressed and needs intervention.  You have not mentioned how old your sister is but I am suspecting she is not elderly.  It is also not clear why she doesn't want to live anymore.  Is it the side effects?  Was her disease under control with Sprycel?  Does she know there are other drugs she can take?  There have been people on this forum who suffered terribly for years and then finally found the right drug for them and they talk about getting their life back and going on to live their life with good quality.  It is one thing to respect your sister's wishes and I don't know your relationship with your sister, but if it was my brother I would be looking to have him talk to a cancer counselor.  If I were you, I would reach out to the LLS and talk to one of the social workers.  Explain the situation and see what they can recommend.  They are good people who can help you get the care your sister needs.  If it turns out this is what she really wants, then so be it, but at least you and the rest of your family will know you did what you could to help her.  Best of luck.

[GerryL]

I had thought that you would just become susceptible to a virus or infection, I hadn't even thought about oxygen deprivation - don't much like the sound of that.

[hannibellemo]

Catlvr,

I'm so sorry that your sister has reached the point where she feels there is no alternative. I don't know who her doctor is but perhaps a consultation with a specialist would be helpful. Do you know what her disease control status was? This is usually determined through PCR testing. She may find relief through dose reduction or a switch to a different drug. In addition to other dreadful things that have already been mentioned, CML can spread to your brain via spinal fluid. It really is a most unpleasant way to die.

I feel that her medical team has let her down at some point and she might feel differently if she (or you) spoke to someone like Dr. Brian Druker at OHSU; his e-mail address is: drukerb@ohsu.edu

If your sister is determined to go through with this, encourage her to consult a paliative care physician.

My thoughts are with you and your family,

Pat

[valiantchong]

Every one is different, the median is about 3 years, without any medication, one can try chinese herbs medication or Ayurvedic medication, there is claim could control leukemia over 18 years. Wondering if it is true in India there is a master Yogi claim could cure CML with breath exercises and Ayurvedic medicine.... Well, no harm done trying alternative medication if western medication failed....There is some dietritian claim that can control cancer, there are many books on diet control for cancer.... wondering anyone tried successfully.

With Glivec, base on the expert estimate life expectancy about 25-30 yrs....

[corbitt]

catlvr,

go to www.tjsuppy.com. order 500mg bottles of B17 ( Laetrile) and start giving her about 1000mg a day 3 times a day. if she is not throwing up, continue increasing the meds. this is a last resort type of 'hail mary'. There is a ton of info on it. My son was on it in Dec and Jan before he started a clinical trial. The PET scans before and after showed mixed results. Some lymph modes increased in size and some shrunk. 

If you decide to go this route, send me an email at jandkcorbitt@yahoo.com  and I can give you a few other suplements to take that helps get the B17 to do its job.

I am so sorry that you two are going through this. You are both dealing with your own set of pain, frustration, anxiety and depression.

John

[gianfranko]

Cat,

what exactly is your sister's reason for going off the medication?  On your second post you said: "She want's to die she say's. Just tired of having the leukemia for almost 9 yrs"; do you know what she means by that?  Is she just tired of the side effects of the drug?  If so, she can post what those are and I am sure the community can help her with them.  Is it something else?  Money?  Depression?  Has something else on happened to her recently to trigger this?  Basically, at least in my opinion, I am guessing that there is something she is not telling you.

Also, be careful of some holistic approaches to treating cancer including Laetrile: http://www.cancer.go...age2#Section_23

God knows I wish alot of them were true.  But, most of the time, they just aren't.

[helenet]

This is horrible. 

Does anyone remember the thread for the woman who announced she was done with the side affects and was not going to take the meds any more?  Does anyone remember her name or the name of the thread?  Could this be one in the same?

None of this makes any sense to me, especially with the controllable disease that we have so many options for.  For the majority the outlook is so positive that some refer to CML as a chronic condition.  I guess if you are so depressed you could let anything could kill you-- such as too much sugar for a diabetic.  I agree with Trey, this is very selfish!  I don't mean to be harsh with you- as I know you are feeling very helpless for your sister.

I too have siblings that are slowly killing themselves with their life styles and I am helpless to do anything.  I bet there is a support group out there for you.  Perhaps her doctor has a support group going-- and will accept a family member.  I know my Onc office has a support group, and so does the local leukemia association chapter.  Please seek them out. I plugged in your zip code for the following link http://www.lls.org/aboutlls/chapters/

And came up with the following result. LLS's national office is based in White Plains, NY:

The Leukemia & Lymphoma Society

1311 Mamaroneck Avenue, Suite 310

White Plains, NY 10605

Phone: (914) 949-5213

I hope this can offer you some help as I completely understand how this is making you suffer!

[knoppl]

I cannot agree more with everyone who is saying get her some professional help to sort through this. Cry for help, slow suicide, I am not sure but she needs to talk to someone before making the final decision about treatment or not. This must be so hard for you!!!    Kindest regards!

[rickpister]

I remember the thread but I believe that person ended up getting back on the meds.

[catlvr]

just an update on my sister. she saw the Dr. on Monday. WBC is now 299,600 in Feb it was 190,000. She's having bone pain in her left leg and ankle. Still is high functioning. The Dr. said with the wbc so high the blood is thick and it could cause a stroke and then possibley a coma. My sis isn't changing her mind she's at peace with her dicision.

[PhilB]

Thank you for the update Catlvr.  I fear there is nothing we can do but extend our sympathies to her family and healthcare staff who are having to cope with her suicide.  If you think there is any possibility that a deputation of CML'ers from this site turning up in person and force-feeding her with Sprycel would help I'm sure you'd get plenty of volunteers.

Phil

[Trey]

The easy part is behind her.  It is all downhill from here on.