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cns nonhodgkins lymphoma-poojarastogi..need help

poojarastogi
Posts: 2
Joined: May 2013

my wife is a patient of non hodgkins lymphoma,she is a case of relaplse in her cns ( optic nerve comressed ) cant see now from her both eyes...her body is going down day by day...and my doctors are confused now....can anybody guide what treatment we should plan now...she is 33 years old.and about 90 kgs by wt.

Mark G.'s picture
Mark G.
Posts: 12
Joined: Apr 2013

Have you looked at the brain cancer discussion board?  Ten posts down is a cns lymphoma discussion.  There is also some under head and neck.  Wish I could be of more help. 

Mark

illead's picture
illead
Posts: 503
Joined: Aug 2012

That is a good suggestion from Mark.  We sure hope things will get better for your wife.  Know this must be scary for you but hopefully her doctors can get to the bottom of it.  Perhaps you need to get a second opinion or maybe there is another oncologist more specialized in her type of lymphoma.   Our thoughts are with you.  Bill & Becky

poojarastogi
Posts: 2
Joined: May 2013

thanks mark for suggestion.

yes i have looked brain cancer discussion board. best treatment i have found is high dose chemo and than autologus stem cell transplant  ..but my doctor in India( new delhi) is not much confident about success of autologus transplant in her case.my wife was detected with B- CELL NON HODGKINS LYMPHOMA in july 2011. our dr started R-CHOP immediately six r-chop was given successfully and my wife responded chemo very well......but unfortunately she was detected immediately after sixth chemo with cns lymphoma....and than she was given radaition 30 fractions and than high dose chemo after one month....she was not able to tolerate high dose chemo and went in to I CU for twenty days on full ventilator support....after that our dr planned for asctransplant..which was not successfull..because stem cells was not able to collected from her body....our dr. recommended MOZOBIL...to import from USA ..which we didd...but not tried as dr wants to wt for another relapse...which happenned(RELAPSE) in feb..2013 ...her vision is completely nil now...her optic nerve ( chiasm) is compressed in mri report but her full body is clean .....one of my friend doctor recommended retuximab with combinationation of tremozolomide....one cycle we gave to her in march but ..failed no result no improvemnt.....her condition is going down day by day...and dr. is saying there is not much outcome...i need abest suggestion whether any treatment is left?  whether we should plan high dose chemo and autologus transplant ? whether she will be able see again after this treatment ?  pls ans these questions....

 

Her present condition is... she is able to walk with walker , cannot see from her both eyes completely, she dont have her bladder control from last fifteen months..., she is eating well and gaining wt very fast.

best regards

nimesh rastogi

INDIA..NEW DELHI.

leprechaun2
Posts: 73
Joined: Jul 2011

Decadron?  I am not sure where you are or who is giving your wife treatment but the first med my hub was treated with for his cns non-hodgkins lymphoma was a steroid, decadron because it shrinks the tumors so fast.

I hope you find a doc who specializes in this because it is treatable.  My husband is approaching his five years since diagnosis this June.

Check out cns lymphoma on the Brain page.  Good luck to you both, God bless,

 

 

GKH
Posts: 292
Joined: Jul 2012

I may possibly have a very rare form of FNHL in my eyes which means CNS. I was told the very best place to go is Johns Hopkins Eye Clinic in Baltimore. There are three doctors there who specialize in Ocular lymphoma who have experience treating FNHL in the CNS. My onc says it is so rare that most retina specialists and opthalmologists would never recognize it as cancer as it presents very differently than DLBCL. However as I said, FNHL is extremely rare in the eyes. DLBCL is not so most any competent oncologist can help with that.

My friends wife had DLBCL in her CNS. It was treated with radiation and by replacing a small amount of spinal fluid with chemo drugs multiple times. She is now in remission for 4 years and back to teaching. It can be treated but its a tough row to hoe.

 

Good luck.

Mary N.
Posts: 82
Joined: Jun 2013

Hi,  I was diagnosed 3 1/2 years ago with primary cns lynphoma and was started immediately on high dose MTX and Rituxan.  I was losing my sight because tumor was pressing on optic nerve.  I have been receiving the high dose MTX and rituxan since then and now have monthly rituxan and every 4 months the high dose.  Has your doc tried the Rituxan.  I have read of some who are able to shrink tumors just on that.  One of my tumors was gone in 4 months and the other took 8 months.  Best of luck finding the correct protocol for your wife.  Blessing.  Oh my sight is back but that tumor was not as developed as the other one was.  I have been driving for 3 years and was working until I decided it was time to retire.

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