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#1 Sunshine48

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Posted 18 February 2012 - 01:14 AM

Hi there! I'm currently battling CML for a while now. I just turned 26 and been on hydrea, gleevec,  tasigna and currently on sprycel.  Being a typical mid twenties gal my body is as stubborn as my personality lol. So far none of the drugs have had any effect on me, except nasty side effects. I am a candidate for a transplant and chance for a cure "since I'm young" though I think I'm getting up there lol. My platelets today showed 2.6 million and WBC of 31 thousand. What the F right? It's very aggravating that I can't just accept treatment! I should know if my sister is a mAtch with in next week or so then off to donor bank if not. Should I post on transplant board rather then CML? I guess just looking for support. Hard to find through people who aren't full understanding. I was told this was an "oldER" (not calling anyone old lo) cancer so I haven't really met Anyone around me age to talk and relate to. Not that I wouldn't love talking to ANYONE about it. I'll need all the support an friends I can get through all of this...



#2 threedprof

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Posted 18 February 2012 - 01:42 AM

Im sorry to hear you arent responding well to the treatments.  Have you had any mutation testing done?



#3 AmyH

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Posted 18 February 2012 - 04:17 AM

I'm sorry to hear you aren't responding to treatments.    I'm 31 and started on Gleevec and luckily its worked for me.  I hope your sister is a match!  I will be praying for you. 



#4 hannibellemo

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Posted 18 February 2012 - 08:49 AM

Hi, Sunshine!

I'm so sorry that you're not responding to any medications! Of course, you are welcome to post on here. If it is determined you will get a transplant soon you will get better information from the transplant discussion board though, because they've been through it, or going through it and we haven't/aren't.

Have the doctors talked to you about Ponatonib? It is showing good results against T315i mutation (if that is what you have). Trials are closed but it is available for compassionate use. Talk to you doctors about it right away, it takes awhile to get going because they treat compassionate use like an individual trial approval, evidently. Go to http://www.newcmldrug.com for more information if you'd like.

Keep us posted whatever you decide to do and good luck. Sending you warm, healing thoughts!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#5 Trey

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Posted 18 February 2012 - 09:42 AM

I would encourage you to continue posting here for a while.  Your story will be of interest to others.  Would be interested in the story of how you got from diagnosis to this point, and why the docs thought you were not responding to the drugs.



#6 lthouse612

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Posted 18 February 2012 - 10:03 AM

Hello and welcome... I was once told it was an "older" person's illness too but it really seems that's not the case these days.  I was dx when I was 34...which to me I considered to be somewhat young.  Oh well! Anyway, I hope things start turning for the better in your case.  You will receive plenty of support in here and you'll have so much information available through everyone elses shared experiences.  It's really nice having others "know" what you're dealing with and who can relate to how you are feeling.  You've definitely come to the right place to find friends too. I believe we all need that support and encouragement in dealing with this illness and other things that may come up because of it.  It's helped me tremendously. 

Mark



#7 Happycat

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Posted 18 February 2012 - 06:32 PM

Hi, Sunshine,

Sorry to hear you are not responding well to drugs. How long have you been dx'd?  How long on treatment?  Would be interested in hearing your story.  How did you find out?

I got a big ugly hematoma from my allergy shot which sent me to the doc for a blood test.  Had been having weird little bruises for about a year beforehand. I figured I was taking too much ibuprofen. Boy, was I wrong!

Anyway, tells us a little more about yourself, etc.  I'm now 45 yo, been dx'd for almost 11 mo, have 3 kids, 2 cats and 1 husband.

TTUL

Traci



#8 lthouse612

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Posted 18 February 2012 - 06:40 PM

LOL... I'm sorry I just had to comment... the "1 husband" was preceded by the cats!  Just struck me funny is all! Thanks!  Oh I have 2 boys, 11 fish, 2 snails, and a wife!    FYI-The aquatic lifeforms are those of my 2 boys... I'm still trying to convince the wife of a "real" pet- dog.  Wish me luck!

Mark



#9 NotJack?

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Posted 18 February 2012 - 06:59 PM

Welcome Sunshine,

Good to have you here,  but there is no reason that you can't have friends on both!  The more the merrier - right!  There are quite a number of younger posters here, but regretfully, I am not one of them.  Good luck, and I second Pat's suggestion on the Ponatonib, definitely worth checking out!  Jack


Jack


#10 Susan61

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Posted 18 February 2012 - 08:06 PM

Welcome Sunshine:  Stay with us all you want, and share what you are going through.  There is always someone else looking for possibly the same answers as  you.  Follow up on some of the advice you just got from others with regard to mutation testing etc.  You also did not mention where you have been getting your treatment.  That could mean a lot in how your CML is being handled too.  The more you share, the more help you can get.  We have such a large group here, and everyone has had different experiences.  I think you will find a lot of support and caring right here.

We have so many newcomers the past few months who are very young like yourself.  You will make some new friends in the process.  Hope we hear  more from you.

Susan



#11 scuba

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Posted 18 February 2012 - 08:16 PM

Hey Sunshine - Welcome to the site. Let's get down to business.

1. When were you diagnosed.

2. What were your levels at diagnosis.

3. Did you have a mutation test done? Verify the type of CML you have.

4. Contact a specialist that is EXPERT in CML. Let me repeat - get in touch with an EXPERT in CML. See them right away.

There is a chance you may not need a transplant. TKI drugs are quite effective when matched with the specific clonal variation you have.

Local Oncologist/hematologists are not necessarily up on all of this (sad to say). But experts at the research centers are. Search this site for one who may be near you. Read Trey's blog for the CML newcomer to get a good orientation.

http://treyscml.blogspot.com/

Ask questions on ANYTHING you don't understand. People here will answer and guide you. CML is very treatable with the right Tyrosine Kinase Inhibitor (TKI). Even my Oncologist, Dr. Cortes at M.D. Anderson Cancer Center believes that Transplants for CML are getting more and more rare.

You found the right place to help guide you.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#12 Susan61

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Posted 18 February 2012 - 08:33 PM

Very Well Put There Scuba:  You explained things to this young girl very well.  I was on the same track as you as far as what has been done to get to this point, but you said it all.  Hope she gets some concrete answers and decisions soon.



#13 Happycat

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Posted 18 February 2012 - 09:29 PM

Well, with 1 wife, 3 daughters and 2 female cats, he's pretty much outnumbered around here and, since I'm sure he'd say it, I'll say it for him-  he's used to coming last around here!

Traci



#14 Fas

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Posted 18 February 2012 - 10:57 PM

Sunshine,

Welcome.  This site has a wealth of information along with the kindness and compassion of the people who post it..  Think you have gotten some very good suggestions and I hope your treatment turns around soon.

Hang in there,

Fran



#15 Judy2

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Posted 18 February 2012 - 11:15 PM

Hi Sunshine,

As everyone before me has said, welcome to the group. You will find tons of support and great info on this site. We have people of all ages on the board, hopefully you will find a few special people you can connect with. Post whenever  you have a question or just to vent. I'm hoping you will find a med that works for you, please keep us informed as to your progress.

Judy



#16 Guest_billronm_*

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Posted 19 February 2012 - 12:20 AM

Hi Sunshine,

   First of all welcome to your new site. I can't even imagine what you are going through right now. Well you have us now and you can have the screaming fits and we'll be here for you (we all get there at one time or another). Your Bio says you have only had cml for 2 months and you have already gone through all those meds? It really doesn't sound like your system has had enough time to accept these drugs. Most of us were told by our oncs all we had to do was take a pill a day and we would be fine, Yeah Right!  Some people don't have any trouble with side-effects but most of us do. And our bloodwork goes crazy for a while up and down. I don't know how to put this because I don't understand all the medical terms and numbers about cml but I have faith in my onc and i'm going on 5 years since dx. Do you like your onc? Don't hesitate to get another opinion I did, 3 weeks after my dx. And I also got rid of my first onc. And you have to be really patient with the side-effects at first they can be a real pain in the arse. There are a lot of other people on this site who can give you so much more information than me, but from what little bit I do understand is talking about a transplant only 2 mos after dx. seems too soon. Please don't rush into anything.

                                                                                                                         Sincerely  Billie



#17 Guest_billronm_*

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Posted 19 February 2012 - 12:25 AM

Sunshine,

Please get back to Trey, I believe he knows more about cml than any oncologist we know.   Billie



#18 Sunshine48

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Posted 19 February 2012 - 01:06 AM

Well first of all wow thanks for the welcoming from everyone!! Made this horrible day get better! So I'm a let's share what I want when I feel comfy Sharing it type of girl... I kinda took the let's get down to business message like pushy don't care. Y'all don't have to write me like I said I've had CML a while I know a lot about it, the TKI's and ones in clinical trials right now. I am seeing a CML EXPERT I repeat EXPERT! I started off at a cancer center with CML oncologist then referred to a specialist and I've seen a CML expert!  When tki drugs are making me hate life and have 1) NO response and 2) so many side effects I

In and out of hospitals I think if I'm able to be cured I want to!!! Like I'm working with a team of wonderful individuals and yes they told me transplants for CML has become VERY rare and that's awesome! But why would I keep putting myself through torture waiting on new drugs and hoping they work when I have this chance now while I'm young? I've been fighting CML since summer of 2010, almost two yrs! I had amazing result first few months numbers wise and then went backwards all a sudden. That's when I was referred to specialist who put me on tasigna 800 mg a day, this made me go WORST my specialist said he's treated tons of people and not seen tasigna not even make a slight dent in numbers yet alone make them all worsen. Then the extreme daily headaches I was having where it would get so bad I'd randomly pass out while walking and my fatigue was so bad I couldnt even make myself get out of bed. Sprycel so far no change either and it's coming up on 3 months on it from the cml expert!  I saw a transplant doctor I was referred to and he took my case to the board of docs. They all agreed it'd safer to do transplant then not to. By the way my specialist was at md anderson in Texas I flew out there so I mean EVERY person is different. I know they dangers of the transplant and trust me I'm petrified but on the same sense like devoting two yrs of my life to possibly life the rest of my life cancer free it's worth trying. I think God has plans for us all and he will let my body know what's best for it. Maybe this isn't the site for me or maybe I'm just taking the messages wrong because I had an emotional day and been in a lot of pain. I joined for support not to be put down or told my doctors are not right?? I've been to four, like I dunno what else I'm suppose to do lol. Ultimately its my choice they can't force me but I hope that I'd get support either way. 

They have done mutation tests and I have no mutations! I attend one of the highest ranked CML hospitals / cancer centers in the world and they make me their number one priority.. I feel safe in their judgement and blessed to be able to have them take me on! They didn't have to yet they asked my to take over because I'm rare to them.  I finally feel safe at the hospital I'm at and that goes along way to me. So thanks everyone who was nice to me:-). I'm going to sleep but thank you for depleting everyone



#19 threedprof

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Posted 19 February 2012 - 02:34 AM

I can understand how you feel, Sunshine48.  I do want to help you see through your pain and say that these folks on the forum do nothing but care and genuinely want to help you.

Stupid question but have you taken your meds daily at the same time, daily?  never skipping days since diagnosis?



#20 Sunshine48

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Posted 19 February 2012 - 08:10 AM

Thanks and it's ok Ive been asked it before.... Yes I took my pills as directed daily. I missed one pill of gleevec two treats ago and calked my oncologist ast the time right away. Other then that always taken my pill.






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