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Diognised with CML 2 months back need support :)


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#1 Sandeep

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Posted 03 July 2011 - 02:58 AM

hi every one,

i am sandeep. i am from india. i got married 4 months back. two months back i visitted doctor with my wife. he gave good news that my wife is pregnant. and same time he gave me small checkup and asked me to to go through few other tests. finally he gave me a bad news. CML. welll... i work in Dubai ..so i went back to india and took all the tests including bone marrow biopsy. doctor started treatment with IMATINIB first 30 days it was horrible. with all the side effects. now its ok for me. and as of my wife and parents i am not not able to control their fear. can anyone please tell me is CML dangerous???. what care i should take.



#2 GerryL

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Posted 03 July 2011 - 05:52 AM

Hi sandeep,

Welcome to the discussion board, sorry you've had to join us, but hopefully we can help put your family's mind at rest. First thing congratulations to you and your wife on your wife's pregnancy, with any luck you'll be bouncing your grandchildren on your knees later in life. I'll leave it to Trey and the others to pass on all the links to useful information that Trey has put together. A couple of things I will say is that back in the year 2000 CML was definitely pretty scary, not to say it isn't scary now when you first get diagnosed, but there have been some major changes in treatment since then with the creation of the TKIs such as Gleevec. For me, I've been on Gleevec now for 11months and life has returned to pretty much normal for me.

If you've got any questions, just ask and one or more of us will answer, though some of the trickier questions may need to be left up to our brains trust.

Gerry



#3 hannibellemo

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Posted 03 July 2011 - 08:37 AM

Hi, sandeep,

If you're looking for support, this is a great place to come.Welcome!

One of our members, Trey, has put together some excellent information for the newly diagnosed and I've attached the link here: http://community.lls...d/2600?tstart=0

That reading will keep you occupied for awhile, come back any time for questions or just to vent, but especially to let us know how your doing.

Congratulations on your marriage and the news you are soon to be parents! That is very, very good news indeed and there is no reason not to think you will be around to enjoy your family for a long, long time!

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>


#4 lala

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Posted 03 July 2011 - 01:16 PM

Welcome to our club!  We welcome you and your wife and all your family!  Please look at saigyoga's postings...another new cml patient......see how everyone is welcoming and so very helpful.  It is a holiday weekend here so if people aren't responding quickly, they will when they return on Tuesday.  CML is scary at the beginning, but for me, six years later it does not scare me!  :). The doctors tell me I will live forever and so will you!  The drugs are amazing...they do their job very well, and you will learn a new normal for you.  It seems that the women suffer from the side effects more than the men so that is good news for you! Hang in there and know the others will resound soon!  Lala in Chicago



#5 Susan61

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Posted 03 July 2011 - 01:49 PM

Hi Sandeep:  Everything the other posts to you said is so right.  I would also like to welcome you to our group.  You came to a great place to find out everything you need to know, and you will see how many  people Live with CML.  I was diagnosed in 1998, and I have been on Gleevec since Oct. of 2000.  This should give you an indication of how you will go on to lead a normal life.  Congratulations on your marriage and being a father in the near future.

Ask us anything you want.  Sometimes you might not think its an important question, but everything is important  to you and to us.  We all try to help one another all the time, and we have some real knowledgeable people here to answer your more involved questions.

You will be very happy you joined us.

Susan



#6 Teresabourgeois

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Posted 03 July 2011 - 04:15 PM

Welcome Sandeep,

I'm new to CML (4 months)  I just wanted to say that no question here is dumb.  So just ask and someone will provide you with helpful information



#7 Guest_billronm_*

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Posted 03 July 2011 - 10:59 PM

Dear Sundeep,

Welcome to our site. I am so glad you found us. You will find so many people with so much knowledge we will guide you through this and please try to get your wife and family on this site or at least try to get to read this. I can't even imagine how you and your family feel. But I can tell you one thing all of us and our familys have felt the same way. I wish I could think of the right words but all I can think of I just got punched in the stomache,I a have cancer, and I'm going to die. I'm not an expert but just about everybody on this site has an incredible amount of knowledge about.cml.

First of all congratulations on your marriage, and soon to be a father you should be so very proud.Let me know what names you are thinking of. I always wished I would have had one more child. Since you got thrown into this tell me I was insane at the time I had those thoughts, I had 2 beautiful children 1 girl and 1 boy. I survied the teenage years with them and I wanted another? Yup i'm crazy.

   Sun,

I have had cml for 4 years and there are many more of us that have had it a lot longer up to 16 years. CML is not contagious, or heredity. And you did not give your baby cml or anyone else. The best explaination right now is we have been exposed to a chemical called benzene. Which we are exposed to everyday,gasoline fumes,soda pop that has been delivered from one climate to another. Everybody is exposed to it everyday. But only a certain amount of people have a certail chromesone that makes us susible to cml. And it was rare we were just the lucky ones? haha

There are 3 medicines called tki's (Gleevac,Sprycel.amd Tasigma..) and there are more and more. Human test trials going on everyday. With our tki's our cml is very manageable soon to be curable.

The tki I presume you are on right now is Gleevac some people all the tki's have side effects but most of them go away or they try another tki.

I hope this helped you a little bit. Just take baby steps until you understand what is going on You have a long life coming. Knowledge is precious,gossip is evil. Look for the truth and you'll be okay'

                                                                                                                                                Very truly your's Billie Murawski



#8 Sandeep

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Posted 04 July 2011 - 10:04 AM

hi,

thanx to everyone for the reply. i got little bit of confidence after seeing so many people answering me.

rgds,sandeep



#9 lala

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Posted 04 July 2011 - 01:08 PM

Hi...I am happy to hear it helped!  This board has helped me a lot, too!  Lala



#10 cousineg

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Posted 04 July 2011 - 03:08 PM

Hi Sandeep,

If you've just been diagnosed , I suggest you to meet Carolyn Blasdel .

If you like art, look at the CMLers portofolio and relax.

Welcome to the group



#11 Girla

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Posted 05 July 2011 - 10:19 AM

Hello over in India. Dont worry. You have a long life ahead of you and as long as you can get your hands on the medicine, you are in good shape. I am 64, dx'd 3 months ago. My blood counts are already back to normal & I have very FEW side effects from the Gleevec I take. I feel weird from time to time but I take blood pressure meds also and think it is because of those, not the gleevec. Live your life! We are all so thankful for the medical research on Leukemia that has brought us these wonderful drugs. Cheers from Texas!



#12 PhilB

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Posted 05 July 2011 - 11:35 AM

Hi Sundeep,

As everyone else has said, congratulations on the marriage / pregnancy and commiserations on the disease.  The important thing is that the odds are strongly in your favour that you'll be there to watch your child grow up - and what's more there shouldn't be anything to stop you having more kids too.

I'm not sure about Lala's theory on women having more side effects that men.  Could it be that men just moan less?  Or have I just proved Teresa wrong about there being no such thing as a dumb question?

Welcome to the madhouse!

Phil



#13 lala

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Posted 05 July 2011 - 12:00 PM

Ohhhhhhhh, Phil, you are in big trouble with Lala!!!!!  I remember reading something that Trey said....maybe it was just about fatigue.....and maybe it was about cml hitting 55 year old ladies!!!!  I think Lucky talked about it too....that the younger crowd can push through the fatigue more easily???????  Really, can't be too sure who said it as my memory is also going fast!!!   :). As far as moaning goes, thank God for this board cuz my doc acted as I should just takethegleevec and continue as if there were no cml.  Omgosh,I sure felt like there was cml, and this board helped me ssssoooooo much.    I feel so bad for the ones that are really struggling cuz I sure wish I felt the old way!!!  Hope you are doing well!  Lala



#14 Tedsey

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Posted 05 July 2011 - 02:23 PM

Dear Sandeep,

I have been a bit slower to respond to the TKIs (I am now on Sprycel) than many others on this board.  However, I am still here and feeling good 19 months after diagnosis.  I am also stable, which is good.  If the disease does not progress, there is no reason to believe we will not live to see our grandchildren (I have a 4 and 2 year old).  Congratulations on your marriage and the baby!  Please feel free to write anything you want.  I wish you quick healing!

All the best,

Tedsey



#15 Sandeep

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Posted 17 July 2011 - 12:48 AM

hi everyone,

doing great after 3 months.... except enemia.. ..

Blood count is OK. heamoglobin count is too low. doctor told it should be between 13 to 18. but my count is 8.5.

Is it because of Imatinib side effects. also my left elbow joint i have pain. i mean its not exactly at joint but bone. if i touch that part of bone it hurts.

rgds,

sandeep



#16 valiantchong

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Posted 17 July 2011 - 10:20 AM

Dont worry to much on the bone pain, it probably be gone in less than a month.



#17 Susan61

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Posted 17 July 2011 - 01:04 PM

Hi Sandeep:  Your coming along just fine.  I developed the anemia not too long after I started my Gleevec, and I am still anemic and doing fine after being on Gleevec 11 years this October.  The joint pain will get better.  Try not to dwell on it, and just take care of your wife who I hope is doing very well with her pregnancy.  Just live your life like nothing happened.  You will get days where you do know your on a drug for CML, but most of the time you will be okay.

I think for me the fatigue was and still is the worst part of it.  I only had nausea when I did not eat enough food with my medication.

     Please keep us updated on how you are doing, and do not forget that you have a bunch of friends on this website to help you get through it all.

     No matter what you go through, most likely you will find someone else on here who had the same exact symptoms at some point.

Take Care

Susan



#18 Sandeep

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Posted 18 July 2011 - 01:54 AM

hi,

thanks for the reply. what is remission ???? i heard somay people saying we reached remission period. People with CML should be on glivec for life long ??

when remission period will be acheived. still i have so many questions..but the thing is questions are poping up once a time. hope one day i will be able to asnwer some one who needs answers.

the main thing is in our region we have very limited option to get gleevec free of cost. Ofcourse i cannot afford to buy. I approached MAX foundation where after verifying my income they asked me to purchase 20 tablets and other 345 they are donating. To tell u truth even 20 tablets its very hard for me to afford but i dont have other options. .

Please clarify me about remission.

Rgds,

Sandeep



#19 GerryL

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Posted 18 July 2011 - 02:04 AM

Hi Sandeep,

Response is a better word for what happens to us - we respond to our medication similar to blood pressure or cholesterol medication. Remission is usually the five year waiting period for people who have received chemotherapy and are waiting to see if their cancer has been destroyed. That is why our milestones all have response at the end eg CHR Complete Hematological Response; CyCR Complete Cytogenetic Response; MMR Major Molecular Response.






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