65 replies to this topic

[Trey]

Sounds like you have done the right things.  Every experience, especially the unusual ones, can help others learn from it.

[Susan61]

Dear Sunshine:  I am glad you reposted with more information, because nobody was trying to be pushy or anything with advice. I think seeing you were such a young person, and did not mention the fact that you were seeing a CML Expert at a Cancer Center, and been dealing with CML for 2 years with no decent response has been frustrating to you, and everyone was just trying to give some baseline helpful ideas to get you through it all.

     You did not say what State you were from,but there has been excellent responses with people who were in the ARIAD trial in MD Anderson Hospital inTexas for Ponatanib.  I know people who have failed every TKI so far, and have gotten to PCRU through the use of Ponatanib.

    Sounds like you want the BMT to finally cure you of the disease, and I wish you the best as you go through the process.  Personally, I would ask about the Ponatanib first as it could possibly even prepare you better for the BMT

    I did do the clinical trial for the Gleevec after refusing to have a BMT with a unrelated donor, but I was also a lot older than you.  I have been Living with CML now for 13 years, and the Gleevec has put me into PCRU for 9 years.

    Everyone is handling their CML in different ways, but just know that we are all a very caring bunch of people who truly understand everything you are going through, because we have been through it too.  Hope you stay in touch, and let us know how your doing.

[NotJack?]

Well said Susan, thanks.  Sunshine, thank you for sharing your story with us.  It sounds like you have been through a lot in the past few years dealing with this monster.  Can't offer answers, just plenty of support.  I think of all of these members as a part of my cancer team, when they tell me what they have found, I share it with my onc, and discuss his take on it.  There is a large part of this that is an art more than a science.  A transplant is certainly a viable option, more  so for you young adults.  There are others here looking at the same options as you are, and appreciate your insight on this important subject.  Take care, and thanks for joining in. Jack

[scuba]

Sunshine - I did not mean to come across as 'pushy'. Your post had no details. Seems like you have done a great deal.

[Sunshine48]

Hey yall thank you for the replies I'm really sorry if I sounded rude or snotty in my lady post I was tired, not feeling well and justlearnedthis tki didn't work either. I'm not a mean erson sorry ya'll. So yeah I've done my hw very well about everything, I know I'm younger but I luckily have a lot of supporters and I have top know everything about everything lol. To answer one question no my mind is not made up to do the transplant, it's just what they feel is going to be my best option because I am not responding well and it's been, seems like forever lol, almost two yrs and I'm no where near where I should be. I'm scared both ways I go I just feel like  I really trust this group of experts and I'm taking their opinion into consideration when it comes to this. I don't want to spend another two years jumping from drug to drug it really stinks. I'm glad I have this site to talk to people along the way. I know bmt are really dangerous and it scares me a lot too. I'm hoping my sister is a match too thatway if I take that rout it might not feel so scary but it's a lot to take in. I know my daddy wouldn't let me do anyhing that's not what he felt best too. He's 50 my best friend a and I trust his opinion. He would also be my caregiver asking with my step lok if I took that route. I live in mix and I see from recent posy some of the other newbies are too. Something must be in the water lol. I see dr topaz at uofm cancer center and he is one of the nest in cml in the world and like I said I have been to tx to visit md anderson too. Hopefully I answered all the newer questions lol and I'm so glad that the tki's are working and ya'll were respondi. Talk soon xo

[idahobeavers]

hey there i also am not responding to the meds. i was  dx in 09 and i have seen 4 onc and have been on gleevec,tasigna and now sprycel which i tell people is a kill or cure.if the side effects dont get you then might just cure ya.i am going to portland oregon to oshu on the 23rd to see a cml specialist, im hoping they know something. i am told i have cml+ph with mds. i have been told from the get go my case is complicated.i hope if u decde to go forth with the bmt it works for you. your too damn young to be going thru this stuff, im 56 so i have lived my life hell girl u r just starting. may god be with you and godspeed to a complete recovery,

[Susan61]

Hi Sunshine:  So glad you got back to us, and you are seeing the best specialist possible.  So your in good hands with whatever is decided on.  We just want you to know that you have so many friends who truly understand, and just ask away about anything you want to know.  Let Dr. Talpaz do his thing. He will lead you in the right direction.  Its good to go through the testing to be ready in case the BMT is the way to go.  When I did my testing.  My brother and sister were a match for each other, but not for me.  Thats why I went with the clinica trial first, and it just happened to work for me.

Keep in touch, and let us know how you are doing.  Your age is a definite benefit to help you make your choice.

Take Care

Susan

[Sunshine48]

Sarah, I'm so sorry that you are going through the same thing as me. It's no fun but I know when you go see your expert they will get you all figured out and healthy again.. Please keep me posted on what they say, might work out for me too lol. Susan, thanks he is amazing and I'm so lucky to have gotten him. He wasn't my first doctor there but once I became a "unique case" I got him : ). I'm glad I get to be apart of this site and hope to make many friends and support in any way I go. It's scary either way, but thank ya'll for writing me

[idahobeavers]

thank you sunshine!!i know we can and will beat this and i will keep u posted and please keep me updated on your journey

[idahobeavers]

thank you sunshine!!i know we can and will beat this and i will keep u posted and please keep me updated on your journey

[Sunshine48]

thank you both! Billie my lips are sealed ;-) I'm sure you're a spring chicken so no worries! I'm hoping this all works out as planned and everything is all ok. It's very very stressful and I'm overwhelmed to the point I have a heart monitor on for the next 48 hrs ugh. sucks but i'm gonna work through this too

[Susan61]

Hi Sunshine:  Your getting yourself all stressed out, and I know how that is.  I do it to myself everytime I have to undergo anything, even if its not related to my CML.  Like Billie said you are young, and thats when the BMT takes better.

I can still remember how stressed I was when they were putting me through all the testing.  You might still be able to get a good result with just a TKI, but they are checking everything out.

    I bet I am older than Billie.  As long as you  know we are all here for you all the time.  There is another young girl on here who is going through the same process as you, and she is only 15.  She is all stressed out like you.

Her posting is under the New to Site and Scared.  Her name is Laila.  Maybe the two of you should talk.  We are trying to let her know that it will all work out for her too.

[Sunshine48]

so I just got a phone call from my transplant doctor and him as well as all the other doctors on his team all agree I need a transplant right away. They just got my sisters blood and are testing it, if she's not a match then hitting up the donar registry. I am in complete shock right now, everyone keeps saying how great news it is and ya I understand but I'm petrified. This is a lot to take in and just wow.

[NotJack?]

Hi Sunshine,

I hope that your sister is a match, but there is a large registry.  When I was taking my son to check out colleges, a number of them had students at tables asking people to register for being a donor.  It was just a swab in the cheek, and we all did it.  They have since taken me off the list, but there were a large number of people there who registered.  I had meant to register many times before, but these college students took the time and initiative to take advantage of a large group of people taking college tours to register a lot of people.  I am thinking that with their efforts, and many others, the chances of you getting a favorable donor are getting better and better!  Good luck, I am sure that it is very scary, but there are a lot of people in your corner.  (and thanks to the students at UMass- Amherst!)   Jack

[Trey]

You might find this posting helpful:

http://community.lls.../message/101607

[Sunshine48]

I'm not sure what the clap is but if it's a few shots and done then okay yeah I agree with you lol.. I'm of course going to go google the clap after I'm done writing you LOL. I know it's a good thing and a cure so I'm happy but just scared all together. I don't know really what to think to be honest.

Jack thank you for the inspiration, it's nice to know many people donate to that and hopefully I find a donor and can move forward. A lot of my friends and family have actually joined the registry now too so they can be a help to anyone in need. It's a good feeling, that some of those people were complete strangers who did this. I'm also a strong supporter of relay for life and since sadly now this year I wont be able to walk for the cause I'm at least doing my part by raising money for it! I'm at about 2200 right now and still pulling strong! My hope is one day they'll find a cure for CML and no one has to live a "normal life just taking a pill everyday" because let's face it, there isn't anything normal about it lol.. i'll keep ya'll posted!