58 replies to this topic

[pamsouth]

What is FA?  PamSouth

[Pinkbubbles9642]

Hey ya'll! So I had my appointment on Friday I was at UOFM from noon until 5:45, such a llloonnggg day. So I'm not responding the Gleevec, which we figured due to my numbers, my whiteblood count and platletes are at an all time high for me. So the doctor said normally when someone responds to gleevec and then stops it's because of a mutation but I fall under the % of people who do NOT have a mutation and they don't know why I'm not responding. They are putting me on tasigna, for now but due to being so young and not having any mutation the doctor said he going to start getting the process set up for a bone marrow transplant :'(... I go to a transplant doctor at UOFM in 3 weeks and also a follow up with my doctor to check blood levels to see is tasigna is lowering anything. He wants the transplant doctor to explain to me the proceedure as well as start testing my family and looking for a donor match. The longest they will leave me on tasigna is 3 months if no improvement and we find the match then it's the transplant taking place. I don't know how I feel about it all, I am kinda like numb, I just stared at the doctor as he told me all the side effects of tasigna, like sudden heart failure, and then that he believes the transplant will most likely be the route we take because I'm so young I should bounce back quicker then if I was older. Since tasigna has a 40-60% chance of working he said we'll look at the glass 60% full rather then empty for now... I'm sure he can but for me I'm like so scared. I was numb through out the entire appointment and time I was there which my best friend went with me, I finally broke down to her about it. and then when we got in the car I looked at her and just started balling. I don't know what's harder to grasp the fact that i'm going to have to do this or the fact I don't have my momma to help me through it. I know I'm 21 now and need to be an adult but I feel like a child and want my mom. How do I keep my mind busy and stay strong when I feel like I could break at any moment... so I've been cleaning and sleeping a lot trying to keep my mind off it but it catches up to me at night and I can't sleep :-/... i know I was diagnosed with PTSD from my mother dien in my arms and it just traumatized me and then dealing with this for the last year but like I don't know how to cope very well, how do you learn to cope? How do you learn to breath normal?? My doctor tried getting me to meditate but i'm to tense to meditate, I can't even relax when I get a massage yet alone sit some where in silence and try to clear my mind, just not something i can do.... so here's the update and if anyone has any advice on coping I have open ears and willing to take any advice... thanks for caring ya'll!!!

[GerryL]

It is probably not the worst thing to have everyone tested and be ready just in case, But I wonder why he is leaving Sprycel out of the equation if Tasigna doesn't work?

[hannibellemo]

MJ,

So glad you got back to us I'm sure you are very bewildered right now. Don't rush or be rushed into a transplant; there is still Sprycel and several other drugs in the works. If transplants weren't last resort more of us would be having them! They are not a walk in the park and most hospitals can tell you what their success rate is with them. I'm sure U of M has those statistics for you.

Did you bring your blood work, BMB-A, and whatever other test results back with you so you can post them? There isn't much we can tell you without them.

Hang in there, you have time to learn and make choices with your doctor - don't let him make them all by himself. In the meantime let us know the numbers - if you don't have them, call and have them faxed or sent to you. One of the things you can do is search for Trey's blog in the upper right corner, or just search under Trey and you will find most of his posts. Lots to read!

Take care and think positively - you have several choices at this point and Tasigna has a very good chance of working for you!

Thinking of you ((hugs))!

Pat

[pamsouth]

MJ,

I think it is good to have a back up plan.  So...  please find some comfort that if the, TKI drugs aren't working your doctor hopefully will have an ACE in his back pocket with a match. You are very young.  I do  know some who have actually been cured of CML from a donor.  They were much older then you.  When I was DX in 2005 a nurse said I will bring my mom in, to meet you, at your next appointment.  Her mom had a transplant from her donor sister, about 10 or 12 years earlier, I can't remember exactly.  Anyhow her mom I believe was in her early 40's when she had her transplant.  I was amazed to meet her mother see how wonderful she looked and well she was doing.  Her mom said. that her doctor/oncologist, told her I don't ever like to  tell anyone they are cured of cancer, but if anyone was ever cured you are!!

I do remember the daughter was not a nurse at the time her mom had the transplant.  After her mom got well she, the daughter, decided to become a nurse in the oncology field.  The daughter said when her mom had the BMT she took care of her mom night and day, for maybe several months to a year, until mum was out of the woods and her mom's sister's stem cells had taken over.  She said she Cloroxed her mom's bathroom ever day and kept everything around her sterile, including her food and drink.  Her mom stayed isolated for a long time so she wouldn't be exposed to germs or viruses or mold or whatever.  Cause, well I am sure you will find out, depending on if they give you full radiation, you are without immune system.  A friend of my husbands, had grandson who had a BMT last year, his mom kept up www.caringbridge.org where she could journal and people could write in their words of encouragement.  Only I think the grand son had non hodskins or something like that. I remember his mother removed the carpet and put in hardwood floor, as you can steam them squeaky clean.  She also put in a new bathroom so their would be no mold or anything.  Like my mom use to say CLEANLINESS IS NEXT TO GODLINESS.  You can't be to much of a neat/clean freak when it comes to BMT. 

Actually when I was dx in 2005 I flew to MDAnderson Houston TX (from my home in Indiana) and they sent out a kit to all my siblings, I have 2 sisters and 2 brothers (even though I was 57 and on Gleevec, they still sent the kit out).   My sister who is 11 years older was a match and my brother who was 2 years younger was a match.  My fraternal twin was not a match. It was not a big deal, they just sent them the kit from Houston TX 3 siblings were in Indiana and one sister was in Florida, and they just took the kit and instructions it to a lab and had a blood drawl. Been a long time ago, can't remember the exact details.

  I am 64 so I have pretty much lived my life, but you are young.  Ever body has difference of opinion.  But at 20 well you got your YOUTH on your side for a transplant if need be, and perhaps a cure!  Doesn't hurt to be prepared.  If you don't need the transplant I am sure they will come up with a cure in your generation.

However as I am sure your oncologist and others will tell you BMT are dangerous, and the percent and age of cure and mortality, and not always a cure and sometimes you can have other lifelong complications, so if a TKI works I would go with the TKI.

When I was first diagnosed LLS had a book they mailed me with the leading CML hospitals and their stats.

Anyhow I don't know if you believe in prayer but i am praying for you.

Get Well Prayer

Lord, hear our heartfelt prayer.  We pray for your mercy, Your compassion, Your grace and Your love.

In all the healthcare decisions for MJ.  Make the work of those treating and helping MJ be guided by YOU.

Lord she is so......... young, Please give MJ a complete recovery.  Lead and guide those around her to provide what she needs: encouragement, assistance and support. Lord, we pray that you will, wrap Your loving arms around MJ.  Giving her comfort, strength and peace, drawing her ever closer to You, as you lead her through this trying time.  In Jesus' name we pray; Amen."

     HE will cover you with HIS feathers and under HIS wings you will find refuge Psalm 91:4

PamSouth

[Judy2]

Hi MJ. My heart breaks for you, having to deal with the loss of your mom and now CML. Please know that we are all here for you, we will be with you every step of the way. Do you go for counseling? Seeing a therapist migh help, perhaps you could ask your onc. to recommend one. I have been very stressed out myself, I saw a social worker for the first time last week, just knowing I have someone to talk to  helps. As for breathing, lie flat and put your arms over your head, so if you are lying on a bed point your arms toward the wall, then take deep slow breaths. Holding your arms in this postion forces you to breath deeply, it helps eliminate shallow breathing and helps with relaxation. MJ, would you consider going for a 2nd opinion? Is your onc. a CML specialist? I know this is a horrible time for you but please know we all care about you and we are  here for you.

Vrtual Hugs,

Judy

[CallMeLucky]

MJ - sorry you are having a tough go of it.  The only advice I have is to not rush into a transplant, nothing is for certain.  Go through the due diligence so you are prepared if you need to go that route, but know that you have other options to exhaust before going to transplant and don't let anyone rush you.  Yes are young, but you are going to be young for a while.  Unless I went into Blast crisis, I would not go to transplant until I had gone through all the TKI drugs and verified none of them work.  There is a good chance that if Tasigna didn't work, that Sprycel could or perhaps the trial drug, ponatinib.  Get second and third opinion if necessary.

[Tedsey]

I feel so sad you are so down.  I would be afraid too.  I also suffer from PTSD (not directly from from CML or my mother's death, but probably also from taking care of her and experiencing her prolonged, painful and debilitating disease as a child--I also had other issues to deal with in childhood).  I think the initial news of CML, or any bad breaks we may have with it, hits people like us a lot harder.  We have dealt and deal with a lot of issues way before most, (but I have some years on you--not quite old enough to be your mom, but I could be your big, big sis).  And we may have gotten a bigger share of life's tragedy.  Although I would never wish sadness or bad luck on anyone, it seems imbalanced and unfair.  And the more I dwell, the sadder I get.  Sometimes, I think that I couldn't possibly handle any more.  Sometimes I get very scared of losing or observing the suffering of the people I deeply love.  As I have experienced, things can go from bad to worse in eyeblink.  But I try hard to stay away from that kind of thinking.  It doesn't help.  My goal is to hang on to now and be completely content with that.  As I have written before, as hard as it is to totally embrace, all we really have is now anyway.  Tomorrow is not here yet.

I wish I could answer all your questions.  How do you breathe normal?  Or in my case, how do you not hold your breath?  It is a bad habit.  I have done it all my life.  You just have to do the best you can.  For me, having someone to talk to, (in my case, my psychologist), and drugs help.  It is nice to have Xanax there when I need it.  Also, the anti-depressant I take seems to help a lot.  Being with the people I love helps the most.  It is nice to hear that you have such a close relationship with your friend.  It is really a big deal to have at least one person in your life you can be entirely open with and who receives you lovingly. 

I am so sorry you cannot sleep.  It is so difficult.  I know the terror that keeps you awake, and I cannot even imagine being told that a SCT may be best for me.  I would really research this.  And as Trey says, make them prove to you why you should get one if it comes to that.  My case is a little different, but it appeared I was not responding well to Gleevec after 9 months.  I switched to Sprycel and had a vast improvement.  I am still somewhat of a slug, but since I had no reliable numbers at diagnosis, I may be doing better than what the present numbers show.  So far, so good.  I really and truly hope the Tasigna works for you.  So few people have the issues you mentioned and are doing fine on the drug.  You will be monitored.  I am not sure why the onc suggested Tasigna.  I would ask for Sprycel.  The reason is that Tasigna is chemically closer to Gleevec.  I figured, since I wasn't doing great on Gleevec, I might do best on something that wasn't so similar (although T has worked for people who didn't do so well on G).  Nevertheless, Sprycel is much easier to take.  Kinda like Gleevec, once a day, and you don't need to worry about taking it with food.  I am not trying to sell Sprycel.  Just suggesting for the reasons above.  It is also stronger and may work better.

I am very disappointed that the doctors scared you so much.  I assume they had to be honest with you, however, since your WBC have increased so quickly on the drug.  I hope, at least, they were kind and you feel your are in good hands. It pains me to imagine you crying in the car.  For you, I pray for a miracle and a cure.  And I hope with all my heart and soul that you do not have to undertake a SCT.  May this second drug be the one that fits.

Blessings and good health to you.  Please continue to let us know how you are doing.  Here is to some sleep during a very trying time.  Write whenever you need.  I am here to listen as I know so many of us are.

All the best,

Tedsey  

[Pinkbubbles9642]

I am on other medications that I can not be on with sprycel.

[Pinkbubbles9642]

Hi Judy, i have been to like four different counselors but I just can never feel comfy enough to truly open up, it's a problem of mine to hold everything in. The doctor i am going to is my 2md opinion actually, I was referred to him (he is a specalist in CML at UOFM Cancer Center) by my original oncologist because he didn't know what to do. Thank you for the tips on the breathing I will try them tonight when I lay down, it just feels so over whelming and I don't know how to take it all in. Thanks for the virtual hug and caring for me, I apprietiate all of ya'll!

[Pinkbubbles9642]

Hi Judy, i have been to like four different counselors but I just can never feel comfy enough to truly open up, it's a problem of mine to hold everything in. The doctor i am going to is my 2md opinion actually, I was referred to him (he is a specalist in CML at UOFM Cancer Center) by my original oncologist because he didn't know what to do. Thank you for the tips on the breathing I will try them tonight when I lay down, it just feels so over whelming and I don't know how to take it all in. Thanks for the virtual hug and caring for me, I apprietiate all of ya'll!

[Judy2]

Hi MJ,

Where is UOFM? Hang in there, friend. If you need someone to talk to on the phone, email me privately with your phone number and I will be glad to call you (to email privately click on my avatar, then click on private message).

Hugs,

Judy

[Pinkbubbles9642]

thank you everyone for the prayers, cares and replies! Its nice to know im not alone! to answer a lot of your questions he did not put me on sprycel because other meds i am on i can not take with it. thank yall again, i dont know what id do without yalls support! i cried to my aunt today that i like this site because yall understand how it feels and the emotional toll. my famiily and friends try but they dont understand

[Pinkbubbles9642]

its university of michigan, its suppose to be rated in the top 15 hospitals for CMLnationally and in top 21 world wide. luckily my specialist is ranked in the top % for CML. thank you so much for the words and support, ill message you my info.

[Dina]

Hi MJ,

I'm so sorry the way you are feeling right now, you are too young to deal with this crisis,

plus your mom is not there when you need her the most, life can be so unfair sometimes.....

but please try your best to stay positive, after the rain there is always a sunshine.

Hope Tasigna works for you. And it should.

[JoshLee]

MJ,

     Dont feel bad for being frustrated and scared. This is some scary stuff sometimes. I am so sorry you lost your mom. You do not deserve this burden, but hopefully tasigna will knock out some of this stuff. Try to open up to your therapist, they can help you with coping. I know what it's like to not be as to sleep, I was taking Ativan for a long time and that helped.  The feeling of panic can be so overwhelming. I do believe in prayer and will pray for you. Imagine comforting things and try to get some rest....

If not....Netflix....

[Pinkbubbles9642]

Thanks Josh, Netflix has been my savior lol.. I do take adivan during the day and colazapam for night time (same thing just last longer) but for some reason I've been staying up even when taking it. I was on Xanex for a while but it didn't work, I have a high tollerance for meds dunno why I have always hated taking pills lol. Thanks for the encouragement and hope everything is going well for you and you had a wonderful new year!

[Susan61]

Hi MJ:  I am going to just say that I agree with everybody who has answered you.  I am praying that the Tasigna works for you to avoid the BMT.  There is a new drug in trial now for those who failed all other TKI's.  I know people who are doing very well on it. , and its called Ponatinib referring to a ARIAD Trial which is being done at MD Anderson Hosp.   I wish it were available for everyone to take for those not responding to other TKI's. 

     Go through the process for a match for a BMT, just in case.  I had to do that when I was not responding to my original form of treament back in1998 before the TKI's were available.  I went through all the anxiety like you are, but the bad thing for me was that I was in my 50's and had no match.  They were getting ready to do a unrelated donor BMT on me Just then Gleevec was in trial, and I have always felt blessed that it came just in the nick of time.

    You are very young, and will probably do very well if you have to get he BMT.  I say IF because you never know what other options could pop up for you.

    Have you gone for a second opinion just to back up what this doctor is saying?  I am a firm believer in getting more than one opinion on anything before I do it.

    You can send me a personal e-mail anytime you need someone to talk to.  Think Postive and Have Faith.

Faith can move mountains, and change things all around for you.  You mentioned 3 months of Tasigna before going for a BMT.  Give it a chance to do its job for you.

   You have plenty of support to get you through right on this Discussion Board. With so many prayers going up for you, I believe you will get some good answers.

Susan

[pamsouth]

MJ,

COOL!!  I am excited to hear you say  ""its university of michigan, its suppose to be rated in the top 15 hospitals for CMLnationally and in top 21 world wide. luckily my specialist is ranked in the top % for CML. thank you so much for the words and support, ill message you my info.""

Glad to see you doing your homework!!  Smart Cookie!!

That will give you some peace of mind and confidence in your doctors and hospital.

I can, believe it or no, remember back to being 20 years old.  Seems like when we get older, we well just get a little braver in talking about personal issues to strangers.  But you will probably develop enough of a bond with others on this board, or at the hospital, etc. that if you need to you can send a private massage or call. Yea it does seem to be a bit awkward talking to a stranger, while they are writing all this down.  

Good Luck, I am excited for you to have options and a high rank doctor and hospital.

PamSouth