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Update and questions

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Offline nice friend

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Re: Update and questions
« Reply #15 on: September 06, 2008, 09:06:29 AM »
Hi Sharimn :
you can start IP6 as my doctor also permitied me to start this one ...
she told me that she will start exjade when my ferritin will become under 1000  and she said " your progress showing that it will happen soon "  hahahaha  i m also on Zinc ad Vit-e to a long on her advice ... i asked her about vit-c she told me that " it will b better  if you can manage to take in natural form like an orange or lemon or GUAVA during chelation.... instead of tablets...

i m finding the space to send full story  of my visit ..... i hope i will get soon ... i think the best place for  my story , is  in general chatters .....

ok tkae care
umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
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Umair
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Offline Sharmin

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Re: Update and questions
« Reply #16 on: September 06, 2008, 09:53:43 PM »
Hello again friends,

We had a quick hg check today - and thank god and all of you for your prayers - at 2 1/2 weeks post transfusion his hg is 109.  We are still 'cautiously optimistic' that the rituximab is working and that the antibodies are finally going away.  We plan to do a transfusion on Friday which will be a little over 3 weeks since his last tx.  We still have him on 10mg of prednisone alternate days, our doctor is thinking to wean him down further if his hg keeps holding.    If his tx frequency decreases then the combination chelation should bring down his iron levels soon  :pray :pray :pray :pray.

Today is his first day back on the ice - he is very excited to begin hockey again.  Thank you all for you love and all of the wonderful advise you give us.  He knows you will all be proud to know that he is playing again after the rough summer he has had  :)  And thank god his attitude has improved he is much happier  :grin 

Umair, thanks again bro.  I do want to start him on IP6, he had been taking it for over a year my only concern about supplements such as vitamin e and zinc is their possible interaction with the rituximab treatment he had this summer.  I am very glad that you are taking these supplements, Dr. Vichinsky was very keen on thals taking them - he told us that these supplements play a large role in protecting your organs from iron induced damage. 

Once again thank you all for your prayers I will keep you posted re his progress and his ferritin levels later this week,

love,

Sharmin
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Kathy11

Re: Update and questions
« Reply #17 on: September 06, 2008, 11:35:23 PM »
hi Sharmin.
Its wonderfull news.
 :hugfriend :hugfriend :hugfriend
I'm happy for your son and you, and for all the efforts that you put in caring for us all .
Good luck.
Kathy
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Offline nice friend

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Re: Update and questions
« Reply #18 on: September 07, 2008, 01:52:09 AM »
Hi Sis :
its niice to hear that he is doing fine and anti-bodies going away ... i didn't help much in this thread but when i was searching for the rituximab.zinc key words i got to know that ( it explained on me ) wat anti-bodies r and how it look's like .... if i m not wrong rituximab is a chemo-therapy like treatment ... plz correct me to understand wat it is and...... shed a little light on it plz ... if it is possible..... and you can easily ..... and if u have some spear time as well ... otherwise please leave it unreplied ... :biggrin

take care
umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
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Offline Andy Battaglia

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Re: Update and questions
« Reply #19 on: September 07, 2008, 02:54:07 AM »
Umair,

That is correct. My employee who has lymphoma has been through chemotherapy twice and part of the treatment was rituxan. It kills B cells which mature into lymphocytes that produce antibodies. The hope is that when new B cells grow, they will be normal again.
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Offline §ãJ¡Ð ساجد

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Re: Update and questions
« Reply #20 on: September 07, 2008, 04:45:01 AM »
Hi Sharmin,

I'm so happy for you :happyyes
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Offline Bostonian_04

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Re: Update and questions
« Reply #21 on: September 07, 2008, 05:37:20 AM »
Sharmin,

I am really Happy to hear that your little soldier is doing very well after a tough time. Best of luck to him for a very bright future.
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Offline nanuaru

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Re: Update and questions
« Reply #22 on: September 08, 2008, 09:11:34 AM »
Quote from: sharmin on August 20, 2008, 01:48:50 AM
Hi Shamim,
  My best wishes are with you . may the ogd bless the child keep up ur morale  :hugfriend
My son's summer has been busy with the rituximab, ivig and transfusions.  His rituximab was completed on aug 7th.  He received a single unit tx  (approx 300cc) on aug 8 (pre tx hg 91).  His pretx hg today was 82.  I know that antibodies have a half life of several weeks - maybe a couple months - but is this drop too much at this stage of his treatment Andy? 

He had an ivig today and is having a tx tomorrow, he was in 3 days last week.  Frankly, he just wants to play as his summer holidays are coming to an end.  I am so worried about him getting depressed if we have to have so many frequent visits.  Does anyone have any ideas on how to prevent this?  I am emotionally exhausted myself, but I am doing everything I can for my son. 

Also, there are different opinions on whether or not to continue the ivig treatments - what do you think Andy? 

Thank you so much everyone for your support,

Sharmin
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Offline Sharmin

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Re: Update and questions
« Reply #23 on: September 10, 2008, 11:51:19 PM »
Thank you everyone for your wishes,  thank god thank god a million times!!

Today his hg after 3 weeks post tx is 97 and his ferritin is 1320!!!!!!!!!!!!!

I know that it is not an exact measure of iron, but it is an indicator that things are improving!!  When his iron levels in Oakland were 2880 his ferriting levels were 2300 - so we know that there is good correlation.  The trend is promising.

I love you all soooooo much!!!  May god bless you all and give you all the best of health!!  None of this would have been possible without your love, prayers and wonderful advice!!
 :love :love :love :love :love :love :love

Sharmin  :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend


« Last Edit: September 11, 2008, 02:07:21 AM by sharmin »
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Sharmin
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Offline nice friend

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Re: Update and questions
« Reply #24 on: September 11, 2008, 12:40:04 AM »
 :congrats
Good to hear that sis :
after all he is doing well .... Congratulations....
Ferritin is not that much high and
its still  decreasing its a super good sign ...
you have to work a little bit more to get it between normal ranges ...
you suffered alot , after a long night of suffering , its a new dawn ...

Best Regards
Take care
Umair
« Last Edit: September 13, 2008, 04:10:46 AM by nice friend »
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
*

Offline Manal

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Re: Update and questions
« Reply #25 on: September 11, 2008, 02:33:12 AM »
Sharmin my dear friend , i am really so happy for you and your son.  I know how stressed you were all the past months :empathy, but thanks God for this wonderful result that i am sure will be better and better. Enjoy every moment my friend, you are a really wonderful mum and you deserve all the best :hugfriend :hugfriend :hugfriend :hugfriend
manal

 :hi5girls :hi5girls :congrats :yay :stars :stars :stars :stars :stars :stars
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Offline §ãJ¡Ð ساجد

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Re: Update and questions
« Reply #26 on: September 11, 2008, 05:02:28 AM »
Hi Sharmin,

That's a great news :yahoo

Time to kick back and relax :party
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Offline Sharmin

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Re: Update and questions
« Reply #27 on: September 11, 2008, 05:08:27 AM »
Thank you my dear friends  :love

I hope that he continues to improve.

I wish you all the best,

Love,
Sharmin
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Offline Sharmin

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Re: Update and questions
« Reply #28 on: September 13, 2008, 04:00:58 AM »
Hi everyone,

We had a transfusion today after 3 1/2 weeks.  The doctor was pleased.  He was also pleased that the ferritin levels have decreased. 

Andy,
I have been hearing that ferritin levels seem to increase initially when using exjade.  Are we not seeing this because we are using the combination therapy?  Could it be that Exjade is clearing iron from the organs and tissue, while desferal is excreting the extra S.F. that is resulting from the Exjade?  Perhaps that is the helpful mechanism behind the success of combination dfo/exjade therapy. 

I hear that they are having a lot of success with this combination therapy.  We have only been on it for about 6 weeks.  Of course we need to see a few ferritin levels over time to get the real picture. 

Sharmin
Sharmin
« Last Edit: September 13, 2008, 02:02:04 PM by sharmin »
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Offline Andy Battaglia

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Re: Update and questions
« Reply #29 on: September 13, 2008, 06:13:45 AM »
Hi Sharmin,

The combination of desferal and Exjade has been very successful in rapidly reducing iron levels in one of our members who was in serious condition with congestive heart failure. Her results were amazing and her ferritin is now under 1000.  I would like to see formal trials but by the time they get around to it, the use may be so widespread, that there won't be much point to trials, other than to establish dosages. I wonder when we'll heard from someone who is using desferal, L1 and Exjade together. It's bound to be tried by someone. A trial using all three would be very interesting.

Everything has been progressing nicely for your son recently. One reason this whole experience hasn't taken more of a toll on his health is that he has been in very good health all along. Diet, supplements and exercise have all played a role. Thals have to work at being healthy but with work, it is possible to have a normal life.
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Andy

All we are saying is give thals a chance.
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