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New Here and Newly Diagnosed with CML


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#21 SkippyRN

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Posted 16 September 2015 - 12:45 PM

Kat73, there may be some catastrophic thinking going on. I do have some self destructive thought patterns. Goes with the long Psych history. But part of the fear is also me making a mistake while at the hospital because I am not fully prepared, which could be catastrophic. I have spoken with my psychologist yesterday afternoon and am starting a chronic illness support group today at 1130. I also see my psychiatrist on 9/21 after the two days I am scheduled to work. Plus I registered for the webinar/phone seminar that LLS is offering about managing CML on 9/22. MsLaLa I was wondering if you were aware of this upcoming seminar. It is only an hour but may be helpful. I was diagnosed with Clinical Depression in 1999 and that changed when I had a manic episode strong enough they could actually make the Diagnosis of Bipolar type 2 about 7 years ago. I have been doing great with this and some of my fears may stem from the act that I don't want to backslide either. I don't want to go back to the depression or the mania. Neither was a good place. I still have people reminding me of stuff I said during my little manic episode.



#22 kat73

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Posted 16 September 2015 - 04:20 PM

Sounds like you're doing a lot of good things to help yourself.  I think you're going to be fine at work.  It may very well be the distraction you need, as you focus on your patients and away from yourself.  You are going to get used to this CML thing!  You'll see.  The important thing right now is that you are doing great.  Hang onto that fact and trust that the other things will get better.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#23 gerry

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Posted 16 September 2015 - 07:16 PM

I had a great friend at work (still do) when I would feel overwhelmed we would head for a quick coffee and he would talk fishing to me. I learnt way to much about fishing, but found that listening to it helped calm my mind down somewhat and I could return to my duties.

Good luck with your journey.



#24 Billie Murawski

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Posted 17 September 2015 - 02:37 AM

Hi Skippy,

 I was first dx with clinical depression and panic disorder in 1979 and I have been living with it ever since. If I were you I'd be more worried about not getting a bit depressed right now You Earned It! I barely remember when I was first dx I had no one to talk to about it and I didn't find this group until 3 years later. It would have been so much easier on me if I had all this wonderful support and understanding when I was first dx. So if you get a bit down just get on the board and you will feel so much better because we have all been there. I was dx in Aug. 2007.         Good luck and welcome Billie



#25 Billie Murawski

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Posted 17 September 2015 - 02:42 AM

HI Gerry, Did he go hunting too? You may be able to write an article for an outdoorsman magazine.



#26 Billie Murawski

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Posted 17 September 2015 - 03:09 AM

Can anyone tell me if there is a site and discussion board for follicular lymphoma? My sisters brother-in-law probably has it just in this past week he has been told he has a tumor that can't be removed because it's wrapped around his carotid artery. The whole family is nuts and as usual Erie's CC doesn't tell you much. He had a lump on his neck in May 2015 and because his ins. has such a high co-pay he went to the vets hospital instead, they did a biopsy and told him it was benighn (can't spell that) but they wanted to remove the lump anyway so they told him they'll schedule surgery and call him ,well they never did the surgery until last week and then they told him it was malignant and couldn't be removed so they sent him to the Cancer Center but they have to do their own tests he did receive some bw results in the mail yesterday from the va but he has no idea what they mean. I feel so bad for him he is in a total panic and he's at the mercy of Erie doctors. Now that the cc has taken over at least he'll get the proper treatment he does have a good Onc. but all this waiting is taking it's toll. But if there is a reliable discussion board he sure needs it. Any help will be appreciated.

                                                        Thank You Billie



#27 Trey

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Posted 17 September 2015 - 05:10 PM

This one seems pretty useful for FL:

http://www.nhlcyberf.../follicular.htm

 

But the carotid artery malignancy has nothing to do with FL.  If he has FL then he has two malignancies which are unrelated.



#28 Billie Murawski

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Posted 17 September 2015 - 10:34 PM

Thanks Trey, right now everyone is in a panic they just keep saying they have to do more tests and my sister just told me it is wrapped around his eardrum also, like you said he probably has more malignancies. The tumor is still growing I thought they would at least start radiation to help shrink it. He is only 56.

 At least now he has a site to go to and learn about what he is dealing with God Bless these discussion boards.



#29 OhNanna

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Posted 18 September 2015 - 10:37 AM

Plus I registered for the webinar/phone seminar that LLS is offering about managing CML on 9/22. MsLaLa I was wondering if you were aware of this upcoming seminar. It is only an hour but may be helpful.

Hi Skippy!  Welcome!  I was diagnosed about 3 months ago now and I take Gleevec. I'm still struggling with side-effects but I'm doing ok. 

 

I'm curious about this seminar that  you mentioned.  Can you direct me to where I can find more information and/or register?



#30 Antilogical

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Posted 18 September 2015 - 12:41 PM

OhNanna - here's a link to the 9/22 CML webinar. It's buried a couple of layers deep in the LLS web site. Not all that intuitive, I must say.

 

http://www.lls.org/e...6321&src2=22346


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#31 tiredblood

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Posted 20 September 2015 - 01:46 PM

Thanks Trey, right now everyone is in a panic they just keep saying they have to do more tests and my sister just told me it is wrapped around his eardrum also, like you said he probably has more malignancies. The tumor is still growing I thought they would at least start radiation to help shrink it. He is only 56.

 At least now he has a site to go to and learn about what he is dealing with God Bless these discussion boards.

Sounds to me like his cancer issues may involve consults with more than one discipline or type of doctor.



#32 Billie Murawski

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Posted 20 September 2015 - 08:09 PM

TB, Yeah I'm afraid it has spread too far. I gave him the lls info so hopefully he'll get on that board and they can help him calm down.

 All this waiting  is driving him nuts.



#33 OhNanna

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Posted 20 September 2015 - 11:56 PM

I guess I'm used to FaceBook, I keep looking for the Like button. 

Thanks for the info Antilogical!

Welcome to SkippyRN and MsLaLa.  I was diagnosed in June, so I'm pretty new too.   This group is great!






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