33 replies to this topic

[GerryL]

Hi Mario,

Only diagnosed in July last year, so bit of a newbie compared to some. As to age, if 50 is the new 40 and 40 is the new 30 - I'm unofficially in my mid 30s. LOL.

To be diagnosed at 25 when you're still feeling indestructable would have been a major blow, I'm glad you're doing so well. 

[RAHIM]

Dear Mario,

I just read the 4 answers and think it's strange that the 4 members jump over my posts, etc.

Mario. Do you think is ok to not answer a new member? It looks to me like a blow "discriminated"

Even my answer was to JADRIAN, that does not means you ignore my posts, etc.

Thank you for your understanding

Many friendly greetings

ABOU Nabil 

[hannibellemo]

Dear RAHIM,

Welcome to the board! I don't think anyone was ignoring you - including Jadrian; he doesn't post here often. If you notice, the post from Jadrian you were replying to was written way back in March of this year. Also, we may answer posts as we read them without going to the bottom of the thread to see who else has posted, etc. You'll get the hang of it the more you read and participate.

There are some very nice and very knowledgeable people here who can help you with any problems or concerns you may have and as time goes on I'm sure you'll be able to return the favor as newer folks come on to this site.

Pat

[mmdojr]

Thanks for defending me Pat,

With all due respect Rahim if you want a more centralzed discussion, create your own.

Like Pat said this discussion was opened almost two years ago and the topic is "From Gleevec to Sprycel."

Its kind of hard to find discussions that are still open that deal with specific issues of Gleevec and Spyrcel.

So please take no disrespect and realize this is an open discussion.

Mario

[GerryL]

Hi RAHIM,

Welcome to the board,  Pat's absolutely right about the way posts can flow. Mario and I were just continuing our previous discussion. There was certainly no intention to make you feel like you were being discriminated against - everyone is welcome here as we are all on the same journey.

Gerry

[soundoff]

Hi Jadrian,

Sorry to hear about the rising PCR buddy.

How is the Sprycel working?

Soundoff

[RAHIM]

Dear Pat, Mario, Gerry and Hannibellemo

Thanks to you all that you have answered me and explained to me the mistake I committed, so I apologize.

You must understand when I enrolled myself (if you can read in the "biography" of 17.10.2011 what I've written"

Yes I have seen that the subjects are from March 2011 and I thought that I could answered. Now, I understand and of course I will not respond the older arguments between members, etc.

Once again tanks, I'm sorry and thank you for your advice,I will pray for all those sick.

Many warm greetings and a speedy recovery

From ABOU Nabil

[GerryL]

Hi Rahim,

It can be a bit confusing when an old discussion thread comes to the top of the list due to someone adding a new comment. Just check the dates and you'll be fine. Jump in anytime when a discussion comes up that you're interested in. There are a number of people on the discussion board for who english is not their first language. Please keep posting.

Wishing you the best of health.

Gerry

[mmdojr]

Thanks Rahim. No harm done.

Mario

[utopiann]

Hello Rahim et al, my apologies for not responding to you sooner. I don't often check these boards, so it's been interesting to see this old post get so much new activity!

So, an update! I am still not PCRU, but the difference in terms of side effects is AMAZING. On Gleevec I had edema, nausea, upset stomach, and my hair was getting brittle and starting to thin. Since switching to Sprycel (100mg daily) I have virtually NONE of those same side effects. I do not get nauseous on it (even if I take it on an empty stomach), I haven't had a single bout of edema, and my hair is all shiny and healthy again (although I'm on a new super easy but radical hair-care regimen which may help explain that also). I would never go back to Gleevec.

My father, who was diagnosed two months ago also with CML, is also on Sprycel and also has experienced no negative side effects. Our blood chemistry ought to be fairly similar due to our blood relationship, which may explain why we are both experiencing a similar reaction (or non-reaction) on Sprycel.

How is your transition to Sprycel thus far, Rahim?

Cheers!

-j

[RAHIM]

Dear JADRIAN,

You can see that yesterday I have sent this mail to this E-mail address (communityreply@lls.org )

And I hope that you have deceived, PLZ can you help me to cancel my membership on LLS.

Thank very much, and I wish you a good Week-End

ABOU NABIL

20. oktober 2011 12:57:47

Dear Jadrian

Thank you for your answer is really kind of your to replay me and honestly I think the forum I have come to is very difficult to me and very complicated.

So I think I will cancel my candidature on (The Leukemia & Lymphoma Society) because I have think, I make many mistake and is because I don´t mastery English language and also the technology of internet etc. I´m not a young man anymore (I´m 69 Y)

Ones again Jadrian thank you and I will pray for you and all the sick people

Have a nice day and may the almighty god be with you and your dears.

Sincerely Yours

ABOU NABIL 

PS. PLZ haw can I remove my page????

[jessw333]

Hello! I am not responding well to the gleevec anymore either...i have been on for about nine years. And just wondering what they told you? Hope your doing well! Jessica

[Trey]

What was the best response you achieved on Gleevec, and what is the response level now? 

[pamsouth]

Rahim,  Don't worry about your English.  Just know that CML is no respecter of person, where ever you live in this world.

Just tell your story best you can! 

Pam