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#1 Lori1990

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Posted 10 April 2014 - 10:17 AM

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#2 August1

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Posted 10 April 2014 - 12:14 PM

Hi Lorraine,

Really sorry that you're going through this and hope the drugs are effective in managing your AML. Your message actually got posted to the CML page. Did you want to post your message to the AML board? They might have better feedback for you.

I wish you the best.



#3 August1

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Posted 10 April 2014 - 02:58 PM

Hi Lorraine,

Great to hear that the chemo is working for you. That's always the first concern but sorry to hear about all of the side effects that comes along with it though. I have CML so I take a TKI (Sprycel) which is a targeted therapy, a pill actually, once per day. I am told I'll likely take a TKI for the rest of my life. It keeps the CML in check but doesn't actually provide a "cure." I am grateful that I have a treatment option that is working for me, but it comes with it's own set of side effects (all of these medications do). Of course the benefit greatly outweighs the inconvenience in my case. I have noticed headaches and visual disturbances on occasion, but I've not experienced anything quite as heavy as hallucinations. I do see though were many people have reported this in both forums and I am sure you will get some good feedback. I wish you the best.

Take care,



#4 hannibellemo

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Posted 10 April 2014 - 03:18 PM

Hi, Lorraine,

I'm so sorry you are having this reaction. What medication is it that you are on now that is also used for CML? Since the advent of Gleevec it is seldom, if ever, chemotherapy is used in the treatment of CML (unless it is hydroxyurea in the very beginning) or unless the person advances to blast crisis and is being prepped for a bone marrow transplant.

We might be able to be more helpful if we had that information.

All the best to you and good luck in your treatment,

Pat


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"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#5 hannibellemo

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Posted 10 April 2014 - 03:18 PM

Hi, Lorraine,

I'm so sorry you are having this reaction. What medication is it that you are on now that is also used for CML? Since the advent of Gleevec it is seldom, if ever, chemotherapy is used in the treatment of CML (unless it is hydroxyurea in the very beginning) or unless the person advances to blast crisis and is being prepped for a bone marrow transplant.

I just read your post on Living with AML and you are referring to methotrexate. That is not used in the treatment of CML on a regular basis anymore because of the targeted therapies that have been developed in the past 15 years.

All the best to you and good luck in your treatment,

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#6 Sneezy12

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Posted 10 April 2014 - 03:42 PM

Lorraine has AML with CNS involvement. Frank



#7 Lori1990

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Posted 10 April 2014 - 03:51 PM

Thank you, I was lost as to why that was posted 8 times continuously. The two are treated incredibly differently. I had AML alone three times before the CNS decided to show up and there are not many things, treatment wise, that the two have in common.



#8 Lori1990

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Posted 10 April 2014 - 04:48 PM

AML with CSF exposure, or in my case my CSF being just overloaded with blast cells is much more serious than your run of the mill AML even at its worst. I know from experience. My doctor had to choose that medication because the doctor I attempted to tell that I didn't feel like I was in remission when he said I was (from my last bout with AML that he claimed was over last spring) never checked my lumbar and by the time I was checked again the CSF was far to full of blast cells to put me on anything with less strength because it would have only postponed the inevitable so I chose to take the risks it brings for the possibility of another remission.

I am here only asking for support from anyone who would like to offer ideas or what worked for them if they had hallucinations also as it is a horrifying experience to go through.

To be as respectful as possible, hannibellemo, we are all here to help each other not to have to explain to you that you don't know my case or my doctor or my medications so if you aren't answering the post to help like everyone else has then please do not bother. We aren't here for that.Its simply disrespectful.



#9 hannibellemo

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Posted 10 April 2014 - 07:17 PM

With all due respect Lorraine, I was trying to be helpful. I have no idea why that posted 8 times. I understand that you have AML with CNS involvement and that you are having terrible side effects. However, I stand by what I said. Those of us with CML don't take the same drugs you do except in very, very rare cases.

I can't find a single place in my post where I questioned your case or your doctor or your medications except to ask what they were as I missed your 2nd post.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#10 Marnie

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Posted 10 April 2014 - 07:49 PM

Lorraine. . .

Hannibellemo is one of the most positive and supportive people on this forum.  I'm not sure what you read into her post, but you may want to reevaluate your response to her.  As you say, we are all here to help one another.  She was very respectful in her answer.  If the multiple post is what annoyed you, then you should be annoyed at the technology, not at her.

All the best,

Marnie



#11 Marnie

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Posted 10 April 2014 - 08:59 PM

Sorry.. . I did not mean to make things worse.  I wish everyone on this forum well.

Marnie



#12 Tex

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Posted 11 April 2014 - 03:58 PM

Lori,

You might have an idea as to why you're here.  I do not think you can say why "we" are here.  It is very typical for us to ask particulars of a disease when they are not evident.  To comment on any aspect of treatment, even something like hallucinations. without knowing would be absolutely irresponsible.

We are people who have struggled with disease or are currently doing so.  We are not answer machines.  We are not professionals.  It could be you're seeking answers we simply can't provide.  I understand that someone can be quite scared when things have gotten to your point.  And you've had more than your share of things to make you scared, nervous, anxious and if I were in your situation, I imagine I'd be pissed as hell at God, Life and everything else.

Still, no one deserves to be responded to as you did to Pat.  I notice that's the only post of yours left on this thread.  I imagine the others were pulled by you or the admins because they were even ruder.  Now, we might not be your friends but we are sure as hell not your enemies.  And we'd like to be your friends if you'd give us a chance. 

If not, that's fine.  I hope you find a place where you can get your answers.  If you'd like to communicate with us, maybe just have some support, even if we can't answer your most pertinent questions, then I think we have the right to expect a minimum of respect and flexibility on your part.

I read that you are suffering PTSD.  I hope you're in counseling for that and that you can address this issue with your counselor.  Many of us require counseling as we go through the process of healing.  Given what you've been through, well, I don't think I could stand.  I've been knocked down a few times myself.  There are times I couldn't make it alone.

I know that we all really want the very best for you and all we've done in our own ways is to try to find how we can assist you within the limits of our capabilities.  I'm sorry the clear answer hasn't emerged for your problem.  Maybe there is no clear answer.  Maybe professional assistance will be required to get the hallucinations to stop.  I wouldn't leave it in the hands of my onc alone because they don't spend a whole lot of time thinking about our emotional health as they're focused on saving our lives.

We all want to help.  But I think we deserve an attitude more aligned with "thank you" than "F you!"  The door is open, I think, from all of us. 

Blessings






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