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What's the best thing?


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#1 AliceJane

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Posted 14 November 2011 - 10:14 AM

you have learned, tip you got from rash cream to advice about living with CML?

I don't know about everyone but with CML sometimes it seems you go from one problem to next, or waiting for next test, next Dr. Visit.

What big or little things do you know that is the best? I have been surprised at the things that have helped me. Sometimes it is the littlest things and often something that surprises me

my best things;

I only have to do the next thing next.  helped me cause I get overwhelmed easy

using vinegar to rinse my scalp, helped the itching

Laughter just happened, my humor grew and I laugh at so much that used to upset me

a good cry is sometimes the best thing you can do for you

And my favorite emotion IS laughter through tears!

somedays, just showing up is good enough.

anyone else want to share?

alice



#2 pammartin

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Posted 14 November 2011 - 12:10 PM

What a great post.  Focusing on the best things is a great idea.  I signed on today to ask for advice about the platelet issue, now in reverse.  It seems the Sprycel and Hydra together worked too well.  Thursday they were at 210,000, today they are at 66,000.  I have to repeat blood work tomorrow, just a few weeks ago I was headed to Pittsburgh for a procedure to remove platelets, seems now I need them. 

My best things,

Dinner with my family

Days the doctor doesn't call right after blood work

Bright sunshine

Laughing because the Ambien was too strong now, and I somehow decided in my sleep I needed a hair trim, (we won't talk about the results) Oh well hair grows back

Hearing from my friends

Signing into the site and receiving the pick me up I needed to get through the next hour



#3 PhilB

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Posted 14 November 2011 - 04:36 PM

Easy.  Being able to fart with confidence.  Now that is what I call a good day.



#4 pammartin

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Posted 14 November 2011 - 05:10 PM

Touche' Phil, so far you won the best thing award!



#5 Pin

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Posted 14 November 2011 - 06:12 PM

That the little things that used to upset me just don't matter so much any more. On most days anyway ;-)  Pam - I hope they sort out your platelets for you, let us know how your test goes tomorrow!  Phil - that is funny! Interestingly, this sharting business is one of the side effects I haven't got though!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#6 jjg

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Posted 14 November 2011 - 06:20 PM

Well it might work ok for Phil but if you have the sharts I'd be careful about farting with too much confidence.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#7 pammartin

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Posted 14 November 2011 - 06:21 PM

Pin, I have decided, and voiced my decision to my oncologist that Sprycel is made with concrete powder.  I read all the things about Gleevac and sharts, but not as much was said about Sprycel.  Huh, no kidding, of course you are not going to shart your drawers, the concrete powder used to make pill assures this won't happen!



#8 jjg

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Posted 14 November 2011 - 06:26 PM

The best side effect I have is that all my gray hairs fell out and 9 months later not many have returned

The best thing is that my husband  loves me even when I look like an alien and lie on the couch . It's brought out the best in our relationship which is kinda fortunate as we were married just a few days before treatment started.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#9 Fas

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Posted 14 November 2011 - 07:01 PM

This is a cool idea.  CML came with some surprising blessings/outcomes for me.  The best things that get me through are:

I discovered inner strength I never knew I had.

I knew my husband was an amazing partner, but he has risen to stratospheric heights facing this challenge.

I know who my real friends are - they are ones that stayed and help me handle the stuff I hand them.

I practice gratitude daily and meditation helps more than I ever thought it could.

The sight and smell of fresh flowers make me smile.

Spending time with family and friends is so joyful.

A warm bath can make me feel like a new person.

Pam, sending you best wishes that the platelet issue gets figured out.  It can be so frustrating to step forward and back at the same time.  Think it is TKI magic!

Fran



#10 SB3

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Posted 14 November 2011 - 08:22 PM

What a great discussion. The best things that I've discovered since my diagnosis:

The colors are brighter

My children truly appreciate me

My marriage has grown stronger (in sickness and in health really does mean something)

My minister is truly gifted in congregational care

The small stuff really doesn't matter anymore (including that extra 15 pounds I've been trying to get rid of for years!)

Resting when I'm tired is no longer a "want" -- it's a "need"

I'll never take good health for granted again



#11 Susan61

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Posted 14 November 2011 - 11:23 PM

That was a great posting, and surely made people stop and think about where they are now, and not where they used to  be.

I always loved Christmas, and after I was diagnosed in Dec. of 1998 I started to count all my Christmases each year as another hurdle I got over.  I am ready to celebrate Christmas #13 next month.

I did find out who my true friends were, and how strong my marriage of 41 years really is., as he supports me through it all.  I also supported him through his Prostate Cancer which he got later on, and is in remission now along with me.

Resting when your tired certainly is a need and not a want for me also.

Gained lots of weight through the years since diagnosis.

My husband tells me how bad my eyes look every morning from all the edema I have, and it does not bother me at all.  We laugh at the different shapes my eyelids take until the swelling goes down.

I make the time to Thank The Lord for every morning I awake, and then again at night before I go to sleep for the day I had. I Ask God To Bless All of You who I have shared my journey with all these years, and all our new people who have joined in also.



#12 dmball22

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Posted 15 November 2011 - 01:35 AM

WOW... What an amazing discussion... I'm just getting started so I look forward to the good things that are to come... Prayin' for you all!



#13 CallMeLucky

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Posted 15 November 2011 - 09:57 AM

I wish I could find something positive out of this experience, but I really can't.  I don't want to be a downer, its just the way I feel.  I am tired and I am in pain and I can't think as clearly as I used to (probably because I am so tired).  I've learned to be more patient and more accepting of things, but only because I am too tired to care and have to conserve my energy.  I don't consider that enlightenment, I consider it a survival instinct.  I am the same person I was before, except I am less than I was before.  I am weaker, I worry more, and I am more limited in what I am willing to do.  It is frustrating.  I guess the best thing is that I got CML instead of AML or something else that is worse than CML.  I do appreciate that I am surviving thanks to the treatment options and I know it can be so much worse, but that only gets me so far.  At the end of the day I am still tired, and I still hurt and I wish this never happened to me (or any of you)......


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#14 grannyd

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Posted 15 November 2011 - 10:49 AM

the best thing about this is---after being diagnosed, the doctor told me it wasn't a death sentence, there is medicine to take & continue to LIVE!!!! My new normal is fine by me as long as I am alive & can enjoy seeing my husband, sons, & grandkids grow & enjoying life!!!!

Little things that used to upset me, now I don't think twice about!

Really listening to the birds, smelling the flowers, not just walking by & getting a whiff of them!!

Enjoying my quiet time with my Lord, I give Him thanks & praise daily for my blessings!!!

Yeah- I have my tired, don't feel good days with CML, I complain sometimes but I am alive & I will take what ever comes with it. Do I wish I didn't have it??? I sure do, I wish none of us here had it, but I guess thru this we have found ways to cope just by listening & asking questions on this site & getting so  many good responses from all the friends we have made here!!!! May we each continue on this journey----together---for MANY years to come!!! Prayers to all granny d



#15 mikefromillinois

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Posted 15 November 2011 - 11:34 AM

Me too!  I would list many of the same things on my "best" list granny.  I had God in my heart before my diagnosis, and I do even more so now.  One of my Mom's old Irish sayings was "you don't have to look too far to find someone worse off than yourself".  Ten days before my diagnosis a three year old neighbor kid "Nicholas" was diagnosed with a more aggressive blood cancer than CML.  After watching this poor little guy lose his hair from chemo, and generally not lead a "normal" life I quit feeling sorry for myself.  I'll live with the side effects and do so without complaining...

Wishing everyone good health and many happy days...    Mike



#16 pammartin

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Posted 15 November 2011 - 12:22 PM

Lucky, I have not been diagnosed long but I can relate to your words.  I guess because I have lived the past 16+ years under the autistic shadow with my son, this seems like another hurdle I sometimes don't know if I have the energy to jump over.   You mentioned you have more patience and acceptance, along with a survival instinct, those are pretty good traits.  I wish it never happen to you also......

Take care



#17 dmball22

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Posted 15 November 2011 - 01:04 PM

I'm just getting started in my treatment...but the best thing right now is the mere fact that I'm still in the fight!

In August of this year, I hit rock bottom of a 10 year stint of Major Depressive Disorder and Severe Anxiety Disorder. I was a handful of pills away from suicide when my Mother made the hardest phone call of her life...she had the police admit me involuntarily to a psychiatric hospital. While very angrily waiting in the ER for them to process me (so angry I told my very loving mother who is my best friend that I hate her...) they did blood test and discovered my high WBC. Instead of being held in the dreary psych ward, they admitted me into their Heart Center and immediately started testing my blood to find the root of the problem. I was in the hospital for 7 days and after 10 very long years, I finally saw the light... God's light! It was all his doing. I had completely shut out my entire family and mulititudes of friends, including my 15 year old son. I had given up on life...but God said, "Nope! Not yet!"... Do I hurt? More and more each day...but this pain is physical not emotional or psychological! Do I wish I didn't have CML? Sometimes... then other times, I thank God that I'm here to fight...I came dangerously close to not fighting anymore and losing my life. From all that I've read, I've learned that I need to be prepared for some challenges...But from my own personal hell, I've learned that there isn't anything that God and I can't handle. Will it be tough...Sometimes! But I'm all the better for it... I've never been closer to my son or my mother. Colors are bright again. The smell after a fresh rain is the absolute best. Watching the humming bird out of my bedroom window is amazing. Each and every moment of every day is a blessing! Lucky, I'm sorry that you are in pain. But I employ you to recognize that you wake up everyday ABLE to feel that pain. My first prayer, thought, meditation when I open my eyes is "God, thank you for THIS day! Thank you for the SOUNDNESS of my MIND and the ACTIVITY of my LIMBS"...even if it's painful movement, it's movement!

I've only been on the site for a few days and I praise God for each and every one of you...for your stories, your struggles, your challenges and your triumphs! No, this life with CML is not the fairy tale we all once pictured for ourselves but at least we are alive...keep loving and enjoying the blessings that we do have... that alone makes it all worth it!

Have a blessed day!

DeAnna



#18 AliceJane

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Posted 15 November 2011 - 05:24 PM

Lucky, I do understand, for months after I first found out, I was thrilled that I knew what was wrong and there was a majic pill I could take and Poof! I would live a normal life.  LOL, that is how my first Onc acted and I believed him, then the reality of taking Gleveec hit.  I was depressed and felt like a failure, why was it majic for everyone but me?  Then I found this place, it was not majic for everyone else but me!!!!  I first ray of I was not failure. 

But the best thing that got me through the worst of it?

LOL, okay, this is not testement to nice,

I realized one day except for dealing with CML for the rest of my life I never had to do anything I did not want, and I could shut anyone down who pushed me. I first learned it when some people were at door trying to convince me their brand of religion was better than mine. You know the type. Finally I had enough. I looked at them and said, "you know what, I don't feel like this today, I have cancer and I am having a bad day"  LOL, they froze and shut up and apolized for bothering me and said we will pray for you and left.   WOW, cancer had power just in the word!!!!   I went nuts, I got rid of pesky cold calls with one word, Cancer!   I can't tell you how many times I used it, I was power hungry and had fun.  It was my first clue that I could find something even on worse day, I could make pesky people go away and feel bad for even bothering me. Holy Moly!!!

I don't know when things will feel better for you, but I believe they will, but in your own time and in your own way.

I believe that because you told me.  You told me because you picked CallMeLucky for your name.  Wether you meant you feel lucky to be alive or whether you picked it in deepest sarcasm. Or some of both.

Also one thing no one was allowed to say to me.  Stay positive, that drove me nuts, positive was not going to cure CML and it would not make me feel better.  I don't try for positive, that is worthless to me. I just find reason to get through the day. LOL, even if it takes having people run in embarsement cause they presured the poor cancer patient.

An other reason I think it will get better for you? You are here.

xoxoxo

alice



#19 Fas

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Posted 15 November 2011 - 05:49 PM

Your post was one of the best things I enjoyed today.  I love your view on dealing with pests using with the power of the C word.  If I have ever said in any of my responses "stay positive,"  I apologize.  My trip words were when people,who genuinely cared about me asked, "How do you feel?"  When they asked that question my mind went to - where the heck do I start?  Do you want to hear about my fatigue, muscle pain, nausea, fear, anger over being diagnosed with CML, etc.  I was so overwhelmed that I asked people to narrow the question for me and instead ask, "How do you feel today?"  It made a world of difference for me .  Adding that one word established a finite period of time and I could respond with the most pressing issue of the moment.  Interesting how words of concern or hope can impact people so differently.

Blessings,

Fran



#20 AliceJane

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Posted 15 November 2011 - 06:18 PM

lol, don't worry about the "stay positive" thing.  It was just one of my quirks, I thought what does that mean? when things go wrong it is because I was not positive enough or worse cause I did not pray hard enough.

I now know people say things because they want to help and the pray comments are way of saying I care about you and want miracle for you and the stay positive is code for don't give up hope.  But I mention them because I think others who feel that way are reading and I want them to know there is someones else who wanted to say,

"take your positve and ........" LOL

You can say it to me as often as you want, 

oh and the How do you feel? How are you doing ? questions, I answered that with, "I am fine" and a smile, knowing that in Alanon I learned that FINE means " F'd up, Insesure, Neurotic and Emotional.

wicked sense of humor is me, lol

now I just take what people say or do as sign of caring, cause they took the time to care, and just like me are doing best they can with this nasty turn of events.






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