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Recently diagnosed with Chronic Myeloid Leukemia


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#41 Judy2

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Posted 18 June 2012 - 12:38 PM

Hi Vicki,

In your reply to Super you said that the literature regarding our TKI's talks of anxiety as a side effect of the med. Interesting, I have been having a lot of panic attacks, I just assumed it was stress over my health, now I am wondering if the panic attacks are a result of my Sprycel. Many years ago I was having a lot of anxiety, quite severe, and I traced it to a herbal tea that I was drinking. Unfortunately, if our anxiety is a result of our TKI's I'm not sure there is much we can do about it apart from taking anti-anxiety med, which I do not want to do. I wonder how may other people on the board are experiencing anxiety/panic and if they feel it is related to our TKI's? It is so hard to know what is coming from where. I hope talking to a psychiatrist is of benefit to you, I'm hoping that you feel better soon.

Judy



#42 pamsouth

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Posted 18 June 2012 - 12:50 PM

Happy Cat,  I was just wondering what your dose is on Gleevec.  I think you said you had a transfusion? Yes

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#43 Susan61

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Posted 18 June 2012 - 03:06 PM

Hi Judy:  I have not spoken to you in awhile, but I go through the panic attacks and anxiety.  I have never contributed it to my Gleevec, only because I never went through it all these years.  Its only the past few years with just life in general, and I think as the years go by you wonder so many different things regarding our TKI drugs.

     I guess we will hear from others who might feel it is or is not connected. Hope your doing well with everything else.

My appointment with my Oncologist is not until July, and then I will see if we are making any changes in my dose or not.

Susan



#44 super99

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Posted 18 June 2012 - 03:07 PM

Vicki,

I

It's nice to meet you this way. But hopefully we can support each other through this community.  I don't know if I have anxiety or depression or not. I feel like I'm in denial that this really happens to me. No one can really understand the impact of that "C" word unless they've been there.  Please stay strong and hang in there.  Can you try to think what would make you feel relaxed - reading, writing, blogging, spending quality time with your children/family?  Or what would make you laugh before you had CML?   I kept myself pretty busy by keep working part-time, spending time with my daughters, reading have helped me a lot the past two weeks.  Of course, I'm still worried about my family's future because all of our families live in another half way around the world. 

I also got Sprycel the other day but am still too scared to take it. My husband is on a business trip. But I will stay with my friend tomorrow night and will take the med.  Some of my friends who are not into western medicine are hesitant for me to take meds., too.  But I don't think we have choice, do we?



#45 Susan61

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Posted 18 June 2012 - 03:14 PM

Hi Vicki:  The fact that you are recently diagnosed, and things are trying to sink in for you is probably causing a good percent of your depression and anxiety.  Having young children, you cannot help but think what the future will bring.

Its so normal, but as you go along with treatment and you see how well your doing I think it gets better to some extent.

     This board has been so helpful to everybody.  You will make a lot of friendships, and my opinion is that you are better off talking to people who know exactly how you feel and what you go through.  My family is very supportive, but some days I do not think they understand how I really feel.  My biggest thing is fatigue.  I have been on Gleevec 400mg. for 11 years.  I had all kind of plans for things I needed to do today, and it just did not work out.  I went to a family affair on the weekend,and its taking me two days already to get my energy back.

     Anytime, you have a question just ask us.  Guaranteed someone else will say they had the same problem.

     I hope you start to feel better.   I did see a psychologist years ago, and it did nothing for me.  If you see a Psychiatrist all they want to do is put you on more medications, and thats why I just take one day at a time.

Susan



#46 mariebow

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Posted 18 June 2012 - 03:52 PM

No the headaches are gone, but these sore ribs and muscles soreness and discomfort is a a pain in the tush. lol, I have my next visit with my dr tomorrow, I am going to report it again.  I wonder is the tasigna causing this especially the crimping in my muscles, the rib pain is lessening.



#47 davicsta

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Posted 18 June 2012 - 04:13 PM

Hi Susan

Thanks so much for sharing; 11 years that's encouraging.   The doctors told me 5-10 years which would make my boys 16 and 13 years old,so scary.   Fatigue seems to be a very common side affect, which I know affects my mental health.  I really do not want another medication, just want to get over the hump so I can start taking better care of myself.   I have returned to meditation and yoga and go to accupuncture weekly which is a big help.   Hopefully, with time the yoga and medication will help me relax and stay in the moment rather than focusing so much on what may not be.   I am so glad I joined, I feel encouraged already.   My family is supportive, but they too often do not understand why I am so tired all the time.   I think it has a little to do with I still physically look the same, not quite how many picture someone with cancer, and I am continuing my same routine, albeit with much more effort.      Thanks so much again for your encouragement.

vicki



#48 davicsta

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Posted 18 June 2012 - 04:25 PM

Super99

No, there is not much of a choice, take the medication or the alternative.   I am reading a book, Here for Now; Living Well with Cancer through Mindfulness, Elana Rosenbaum.  It is helpful to hear from survivors and people living with cancer who are feeling what I am feeling.   It can be difficult to convey those feelings to family and friends.   Take care

Vicki



#49 Susan61

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Posted 18 June 2012 - 05:19 PM

Hi VIcki:  I do not know why these doctors are telling people 5 to 10 years.  That was the case over 30 years ago.  I was diagnosed in 1998 before TKI drugs were here.  I have only been on Gleevec for 11 years, but prior to that I was doing some old fashioned treatments as that was the only thing available.  We have some people who have had CML for many years.  I know one woman was 18 years, and I know a man who is at the 30year mark.  He has never reached a MMR, but still fights the battle.  When you get depressed stop and think about what it was like years ago compared to now.  The researchers God Bless Their Hearts have found more and more ways to beat this disease.  They are working toward a cure, but at least they know how to keep it from progressing. Some of these books are good to read, and my  mind is blank right now.  Somebody will chime in here with the name of the author and the book I am trying to think of.It was written by a doctor.  Also, some of the things you might read just make you more depressed.  Try to read uplifting information to get you through the day.

     I do not know if I will be around 20 years from now, just because I am getting older.  I hope I am, so we can talk about how far we have gotten to fight this disease.  I believe I will die from something else before CML gets me.

Again so Glad you Joined Us.

Susan



#50 mariebow

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Posted 18 June 2012 - 05:43 PM

Susan I am glad you addressed that. 



#51 pamsouth

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Posted 18 June 2012 - 06:14 PM

Susan,

I read that too, "5 to 10 years," and after thinking about it.  I think what they are saying, ( I may be wrong)  but if you live on these drug for 5 to 10 years, then you have a 95 % chance of surviving much longer, 20 ? 30 years or knows.

That is my take on that statement.

PamSouth


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#52 jrsboo

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Posted 18 June 2012 - 07:05 PM

Dear Super,

You have to be careful about what you read on the internet.  You should try and check to see what date things were written, and in time, you will learn what are more reliable sites.

I know it is hard to think about taking the drug forever.  But for your non-western medicine friends, it is not their life on the line.  It is yours.  If you don't take the drug, the reality is that you will have about 3-5 years left.  If there were an alternative to our drug out there that worked, we would all be singing its praises.  The closest thing is curcumin, and you can search for that on this site.  There is one fellow who is very sensitive to Sprycel and is one a super low dose and then takes the curcumin along with it.  But he also takes the sprycel!  Important to remember that.

If you don't already have one, find a terrific hemotology/oncologist, or if you are super lucky, a CML specialist.  They will answer all your questions. 

Do you live near one of the major CML research centers?  Where are you?

Hugs,

Caroline



#53 super99

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Posted 18 June 2012 - 07:37 PM

Dear Caroline,

I live in Austin, Texas.  My Hematologist is with Texas Oncology. He is referred by my family doctor and a friend of mine who is a Medical Director from St.David's hospital. My hematologist seems pretty good.  But how can you tell which is terrific which isn't?   I heard about MD Anderson Cancer Center in Houston, TX.  Should I get a second opinion or see the doctor there?

I will take the medicine regardless of what my non-western medicine friends say or think.  I'm just scared to do so while I'm the only caregiver for my children at the moment.  I also talked to the nurse today about my concern.  She said I can wait until my husband returns but I shouldn't concern about the side effects.

Best,

Sup



#54 LivingWellWithCML

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Posted 18 June 2012 - 09:37 PM

What do you think of the book?  I have been reading "The Relaxation Response" in an effort to treat anxiety in a natural way...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#55 Judy2

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Posted 18 June 2012 - 10:29 PM

Hi Susan,

It's good to hear from you, I'm hoping your onc appointment in July goes well and that helps to alleviate some of your anxiety. It's hard to know what comes from what but I am really beginning to wonder if some of the anxiety is a side effect of our meds. I do not want to take up too much of Super's thread so I may post this as a discussion topic. Hope to talk to you soon.

Judy



#56 jrsboo

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Posted 18 June 2012 - 11:28 PM

Dear Super,

Getting a second opinion is a lovely option for you, luckily you live fairly close to the CML mecca (MD Anderson) with Dr. Cortes.  You may find that, like me, being caught so early, you don't have too much to worry about with the disease itself.  I cannot guarantee that you won't have side effects.  If they become too much for you, that might be when you start to think about a consult with Anderson, to make sure that you are on the best drug for you.

But keep in mind (when starting to panic), that there are about 25,000 of us in the US on these drugs.  And now consider how many are having severe side effects on the board (really only a handful).  That shows that MOST people tolerate them just fine.  Usually people only write here when they are new (and scared) or are having trouble.  Statistically, there are very few having problems.  [This is NOT to downplay those of us that DO have moderate to severe side effects!]

And as you can see, it is a warm, welcoming group we have here.

Let us know how your first few days go!

Caroline



#57 davicsta

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Posted 20 June 2012 - 11:18 AM

Hi Dan

I like the book so far.  The author is a therapist who works with cancer patients, then she became a cancer patient.   She talks about her experience from both perspectives and teaches meditation.   I have to admit, at this point meditation is difficult with all the anxiety, but I continue to try.   Eventually, it will be easier and I look forward to the day CML fades into the background .    The meditations are also on CD, which I am planning to get.   I think it will help me focus on the meditation more.  



#58 super99

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Posted 27 June 2012 - 10:47 AM

Hi Caroline,

I took Sprycel last night. I slept okay and thought I might not have had side effects.  I woke up and have felt very tired, my back hurts so much I sometimes can't sit or walk.  I have no energy so I took multi-vitamin and hope it would help.  Doctor said I can take Ibuprofen 400-600 mg, if needed, and drinks lot of water.  I have international traveling in one week and don't even know if I can sit on the plane for 27 hours with 4 different planes.  I might have to request a wheelchair assistance.



#59 Sneezy12

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Posted 27 June 2012 - 11:40 AM

Ibuprofen should not be taken, but Naprosen is acceptable. Frank http://www.ntkinstit...t_uids=22531634



#60 Melanie

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Posted 27 June 2012 - 12:24 PM

Hi Super,

Been following your post and I really don't have anything to add that hasn't already been said perfectly. I just wanted to comment on your post about your plans for an international trip in about a week. Have you told your Dr about this trip and how long will you be gone? My only concern is that usually when starting a TKI drug, you are closely monitored with lab work for the first month or so. Just thought you should make sure your Dr is aware of your upcoming travel plans. Praying you have a smooth transition to Sprycel and you you have a wonderful trip!

Hugs and prayers,

Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)




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