Jump to content


Photo

Just needed to share


  • Please log in to reply
20 replies to this topic

#1 Zu-ko

Zu-ko

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 June 2011 - 08:33 PM

Yesterday my little sister died at age 34 after 9 yrs of battling breast cancer. That same day one year ago I was diagnosised with CML. How crazy is that? I have tried Gleevec, Sprycell and am now on the trial drug ponatinib. All of these drugs have messed with my platelets and white and red counts. This last one I was only on for 3 weeks before being taken off. I have had several platelet infusions. Dr Deininger is giving me 3 more months with the trial medication if I can get my platelets to at least 75. Otherwise I am looking at a BMT. I am scared. I have been so strong and so brave for my entire family. I was the one taking care of my sister and being a patient all at the same time. I love her and she is my best friend. For the last 2 weeks I have watched her slowly bleed out, that started because of low platelets. It was awful to watch what cancer has done to her body. It seemed inhumane what she went through. I don't feel so strong today. I don't know who else to tell this to, but I am terrified I will go the same way.I tend to keep my feelings to myself but today I felt like I was going to burst. I have been grateful for this website to be able to read your post and to educate myself.

Lots of Love to all of you,

Denise



#2 reedgirl

reedgirl

    Member

  • Members
  • PipPip
  • 19 posts

Posted 18 June 2011 - 09:02 PM

Denise,

  So sorry about your sister....my deepest sympathy and condolences.  Praying you will be able to stay on the trial drug and that your blood counts will return to normal.  What a difficult time you are going through.  Hang in there, try to stay strong and fight in honor of your sister who lost her battle.

Audrey



#3 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 18 June 2011 - 09:12 PM

(((Denise))),

I am so sorry for you, your sister and your family.  Please know that she is no longer in pain.  Sometimes, death is a blessing - it was for my dad when he died of cancer.  It was the only way to end his suffering.  It's scary to watch someone you love die like that, when there's so very little you can do to ease the way through.  But just having you there was a comfort and a blessing to her.

We can't know how it will end for us.  I've always been afraid of cancer after seeing what my dad went through.  I've always felt somehow *I* would go that way, too.  I think it is just part of the scars we bear from witnessing that nightmare.  But just because my dad died of cancer, it doesn't mean I will die from it.  And although what your sister went through was awful, it doesn't mean it will happen to you.  

(((Hugs))), believe me, it will get better in time.  It's just takes time.

Traci



#4 Samcerly

Samcerly

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 June 2011 - 09:16 PM

Denise,

I can hear your pain and fear in your post and want you to know I am lifting you up in prayer! and will continue to do so.  Please know your not alone.  I know your trying to be strong for your family with regards to your sister, but please let yourself grieve.  I am sorry for your loss.  Samcerly



#5 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 18 June 2011 - 09:54 PM

Hi Denise,

I'm so sorry to hear about your sister. You must have been very strong to cope with all that and how difficult your CML has been. Take time to grieve and don't feel you have to be brave all the time.

Best wishes

Josie


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


#6 lthouse612

lthouse612

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 June 2011 - 10:01 PM

Hello Denise...   Words cannot express the sympathy I feel of your loss...  What could ever comfort you enough in words alone?  So if you can imagine.. I'm giving you a huge hug from VA and I hope that her love and all the happy memories of her in your life will comfort you and help you get through this very sad time.  It just doesn't ever seem fair in what some of us have to endure while we live our lives from day to day.  I do know that all of us here in this group will always be here to lend and ear or a word... or just maybe knowing there are others out there going through some of the same struggles may help you in dealing with your illness.  Try and keep your chin up and draw strength from us here and know we're all here for you.  I hope you're doing better each day.. Take care and God Bless.....

Mark



#7 Skittles

Skittles

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 June 2011 - 10:35 PM

Denise, my heart and prayers go out to you.  I too have lost a younger sister to breast cancer.  I am so sorry.  Please keep faith that things will work out for you.  You are being treated by one of the best doctors and that is such a plus.   Healing Wishes and a Hug too, Skittles



#8 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 18 June 2011 - 11:13 PM

Dear Denise:  I am so sorry to hear about your sister.  Take the time to grieve for her, and know that she would want you to fight to get to where you should be.

I will lift you up in prayer as many others are doing in our group that your platelets will come up to a safe level so you can continue with the trial.

I just got into a conversation about Positive Thinking , and what it can do in your life.  Please let us know how your doing, and decide that you will do well and keep on going.  You have been so strong for your sister and family, now keep that strength going for yourself.  You can do it!!

Faith Can Move Mountains.   I have seen it happen.  Just trust God to Get You Through.

God Bless and Take Care

Susan 61



#9 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 June 2011 - 11:16 PM

Dear Denise,

How utterly horrific for you.  I cannot imagine what you are going through.  I can hear the pain and the fear in your message.   Please allow yourself to feel your feelings and take as much time as you need to to heal, no one can tell you how to do it.   You have the right to your feelings and the right to process these events in your own way.  The following is a blurb I hand out to clients who are going through a death:

Grief differs based on who we are, whom we have lost, and how much our day-to-day life is altered by the death. A normal reaction to loss, grief is unique in its impact, course and meaning to each of us. Experiencing the loss of a partner, a parent or sibling, or a lifelong friend, with whom we share history, often have special meaning to us.

Thinking about reactions to the loss of a loved one, we tend to think only of the emotional reactions. Yet, people also experience physical and behavioral reactions. The intensity of grief changes over time and through personal growth. Some of the most typical emotional, physical, and behavioral reactions include the following:

Immediate Reactions—The first few weeks following death:

  • Emotional: Shock, Relief,      Release
  • Physical: Numbness, Shortness of breath, Heavy chest, Empty feeling
  • Behavioral: Denial, Disorientation, Crying, Listlessness

Later Reactions—After the shock wears off, you begin to feel your feelings once again:

  • Emotional: Anger, Fear, Guilt, Panic, Loneliness, Depression
  • Physical: Chest pains, Lack of energy, Headaches, Fatigue, Vulnerability to illness,      Tension
  • Behavioral: Over-reactive, Hyper-sensitive, Running, Sleeplessness, Isolation, Need to      relive      death

Adjustment—A time when you think you are going to "make it":

  • Emotional: Taking responsibility, Reconstructing your life
  • Physical: Looking forward, Doing things for oneself
  • Behavioral: Exploring new interests, Personal growth

Remember everyone's reactions and grief are different. The above lists are guides and should not be considered all-inclusive. If you are in doubt about some of your reactions or those of a loved one, consult your physician or mental health practitioner. If outside help is needed, don't be afraid to ask for it.

Personal Adjustments
For weeks after a death, most caring families and friends do all that they can to comfort us, making life as comfortable as possible. Many times, we are still in shock, accepting this support in a daze. Gradually, those around us return to their normal lives, but we do not. The reality of the situation may lead you to think "I am alone," but you are not. Others who have felt what you are feeling now stand ready to help.

Much support and virtual hugs,

Caroline



#10 smbutters

smbutters

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 June 2011 - 11:56 PM

Denise -

I am so sorry about your little sister.  My husband lost his older sister, 36 yrs old, just over a month ago now from a different battle.  He had his second biopsy scheduled at the hospital only two days after she passed and it was very hard for him.  It is so hard to go through all that pain while dealing with your own cancer.  Grief is so hard on the body but you have to go through it and try to take care of yourself at the same time.  I am praying for you and your family.  I pray that you respond to the new drugs and that God will calm your fears and anxiety.  I try to remember that God has a plan and we have to trust in that plan.  Please know you are not alone in what you are going through.  I will keep you in my thoughts and prayers.

Steph    



#11 SunNsand

SunNsand

    Member

  • Members
  • PipPip
  • 21 posts

Posted 19 June 2011 - 02:03 PM

Denise, I understand your fears and I am so sorry your sister has passed. I watched my mom & aunt die of cancer when I was 13 and my sister & niece have had breast cancer, my sister, twice. Those experiences have had a great impact on me. Don't worry about being strong every day. You will have days you may want to cry, or just want to be alone to regroup. However you like to manage your feelings go ahead and do it your way. It sounds like you have been taking wonderful care of your sister, now it's time to take care of yourself. As far as the problems you are having with the TKI's, hopefully Ponatinib will turn things around for you, I've read good, things about it. Please post again sometime and let us know how you are doing.



#12 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 19 June 2011 - 04:30 PM

Very sad.  As you continue to sort out your own therapy issues, be mindful that Oncs seem far too quick to give up on those with low blood counts.  We can survive on much lower counts than most docs realize.  Sometimes stimulating drugs and transfusions are needed.  But you could go back to one of the mainline CML drugs if the clinical trial drops you.  Or you could try to get into a Bosutinib trial, which is apparently not as hard on blood counts.  Don't let the outcome of the Ponatinib clinical trial define what is best for your own therapy.



#13 Barb@Anderson

Barb@Anderson

    New Member

  • Members
  • Pip
  • 0 posts

Posted 19 June 2011 - 09:23 PM

Denise,

I am so sorry about your sister.  The day I was told I had this cancer, I relived the day my husband was called back to his doctor and when we got there he was told he had cancer.  I was with him but when I found out about mine, I was alone.  I saw him go from being a robust man that looked like the picture of health to a shell of a man.  It is inhumane what that stuff does to your body.  I will lift you up in prayer.  You have been a strong woman to have done what you did for your sister while all the time holding onto your sanity with your own sickness.  I admire you very much.  Don't know if I could have done the same although I did take care of my husband until he died.  He would not let even the nurses bath him in the hospital.  He always said my wife will do it.  But I was not sick at the time either. Love to you and your family during this time of grief.   Barb



#14 MJL

MJL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 20 June 2011 - 05:52 AM

I feel your pain. Please keep fighting.

MJL.



#15 Cathy

Cathy

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts
  • LocationWilloughby oh

Posted 20 June 2011 - 07:16 AM

Denise

Just wanted to send you my deepest sympathy I'm so very sorry for your loss. This has to be the most difficult time for you and I pray you will find peace and happiness in the days ahead. We are all here to listen to you. Take care of yourself.

Cathy, 


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#16 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 20 June 2011 - 11:26 AM

I am so sorry for all you are going through right now.  It must be awful.  Please know that many people are thinking of you and caring about you.  I know that offers little, but hopefully it is something.  Also know that what happened to your sister is not destined to be what happens to 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%
 

 


#17 Zu-ko

Zu-ko

    New Member

  • Members
  • Pip
  • 0 posts

Posted 24 June 2011 - 07:07 PM

I would like to thank all of you for sharing your heartfelt comments with me. I want you all to know that it really helped me through a very rough time. I am doing so much better now. There are many things I have learned from my sister, but the one thing that has truly effected me is that she had made the choice to live with her cancer. After a lot of pondering I have chosen that I will not live in fear of what may or may not happen. I still have choices. I chose to live my life with joy and happiness. I am grateful to all of you.

Love, Denise



#18 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 24 June 2011 - 07:37 PM

Dear Denise:  So glad that all the messages helped you to stop and see what good things are still ahead for you.  Please keep in touch with all of us, so we can follow along with how your doing.  Just keep sharing, and you will see how it really helps to talk to people who truly understand and care.

Love To  You Too

Susan



#19 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 24 June 2011 - 08:35 PM

I'm glad today has a better outlook.  We should all take note of this and remember when we feel our worst, it often passes and we do feel good again.  Friends who understand can also help us when we are feeling hopeless.

Glad you are feeling better today...


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%
 

 


#20 nathaliece

nathaliece

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 June 2011 - 09:30 PM

Denise,

I just saw your posts and wanted to say I am so sorry for your loss but admire the fact that you have already been able to reflect on such a tragedy and take something useful from it.  I sincerely hope all of the wonderful memories our your little sister provide you strength and comfort at this time.  You definitely have your own personal angel right now.  I will keep you in my prayers that the new meds succeed and at BMT is not necessary.  Hugs from Kansas City ~

Nat






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users