Primary CNS Lymphoma in brain: survival rate

My husband was diagnosed with primary cns lymphoma Large difuse cell B in brain March 2011.Please write any experience, quality of life.He is back to very normal life after 10 cycles of metho chemo. But lately very depressed

On Dec 21, 2011 11:38 PM RamHS wrote:

My husband was diagnosed with primary cns lymphoma Large difuse cell B in brain March 2011.Please "" target="_blank" rel="nofollow">http://2011.Please " target="_blank" rel="nofollow">2011.Please write any experience, quality of life.He "" target="_blank" rel="nofollow">http://life.He " target="_blank" rel="nofollow">life.He is back to very normal life after 10 cycles of metho chemo. But lately very depressed

Hello,

That's great news that your husband is back to normal life. Depression certainly makes sense after dealing with all this. My husband did very well, too, for a few years. But then it came back and he couldn't have methotrexate which was a problem. I'm happy to tell you my experience but my husband did die. I'm always wary about speaking up because I'm not sure if people want to hear from those who loved ones have already died.

I'm here if you want any information.

Ruth

Thanks for replying back. After how long the cancer came back?

Hello,

You are welcome to read my profile.  My husband was diagnosed in July 2007 with exactly your husbands diagnosis.  He was in remission until Oct/Nov 2009 and then it came back to his brain and eyes.  He went back into treatments and by April2010 his brain Mri was clear and then in  August 2010 it was back in his eyes.  He had 20 radiation treatments only to his eyes.  He was on Temodar through Dec 2010.  Unfortunately, I think it is back.  He had an MRI on Dec 8 and a spot had changed and was brighter.  They scheduled another MRI for Feb 17th but I  think I will be calling the doctor sooner.  I am afraid I am noticing some behavior changes and some confusion.  This is a very hard disease, they say it can be cured, but I have not heard of anyone being cured, only going into remission for periods of time.  The symptoms are very similar to the GBM tumors but the treatments are very different. We have had a roller coaster experience for the past several years.  I am sorry if I sound depressed, but I guess I am right now.  I am trying to be very upbeat and brave but sometimes it gets to you.  I have faith and I know the Lord is in control and I always say God is good,no matter what the outcome.

Right now I am trying to get through Christmas and New Years and then deal with whatever I need too.

God be with you! 

Sheila

 

I learned in April 2011 that I had CNS lymphoma in my brain, but am now in remission.  Shortly after i was diagnosed I met with a psychiatrist and he prescribed an antidepressant drug.  It was very helpful to me during that very stressful period.  I was comfortable to discontinue the drug a few months later.

There are many issues from this disease even after it is in remission.  I've had to adjust my lifestyle because I missed eight months of work and the income it provided; I'm working again but just part time, making less money.  I also don't have the same level of responsibility at work and that's a difficult change.

Physically I have a significant loss of strength and stamina - I took huge amounts of steroids and they caused a lot of muscle damage. Since I was a very active and enjoyed outdoor sports, I really miss feeling strong and healthy.

Naturally the fear of recurrence also causes a lot of stress.  I try not to think about it, but some days I can't keep it out of my mind. 

Emotionally, It's hard to start feeling normal again.  I feel like I've taken so much from my wife, my family, my friends, that I hate to ask for more of their attention, but it's hard to get by on my own sometimes.

Those are just a few of the issues, so it's not surprising that your husband may be depressed.  But things do get better, a little bit every day.  I'm in better shape now than I was in December, and I plan to keep improving mentally and physically.

Good luck to you and your husband.

On Dec 23, 2011 9:55 PM RamHS wrote:

Thanks for replying back. After how long the cancer came back?

Sorry it took so long for me to respond. I only just saw your response.

My husband was originally diagnosed in June 2005. It came back to his brain in January 2008. In 2007, however, he had a very unusual recurrence in his testicle and had to have separate treatment for that, but I think that experience is not common at all.

How is your husband doing now?

On Jan 21, 2012 1:23 AM Idyllwild wrote:

I learned in April 2011 that I had CNS lymphoma in my brain, but am now in remission.  Shortly after i was diagnosed I met with a psychiatrist and he prescribed an antidepressant drug.  It was very helpful to me during that very stressful period.  I was comfortable to discontinue the drug a few months later.

There are many issues from this disease even after it is in remission.  I've had to adjust my lifestyle because I missed eight months of work and the income it provided; I'm working again but just part time, making less money.  I also don't have the same level of responsibility at work and that's a difficult change.

Physically I have a significant loss of strength and stamina - I took huge amounts of steroids and they caused a lot of muscle damage. Since I was a very active and enjoyed outdoor sports, I really miss feeling strong and healthy.

Naturally the fear of recurrence also causes a lot of stress.  I try not to think about it, but some days I can't keep it out of my mind. 

Emotionally, It's hard to start feeling normal again.  I feel like I've taken so much from my wife, my family, my friends, that I hate to ask for more of their attention, but it's hard to get by on my own sometimes.

Those are just a few of the issues, so it's not surprising that your husband may be depressed.  But things do get better, a little bit every day.  I'm in better shape now than I was in December, and I plan to keep improving mentally and physically.

Good luck to you and your husband.

hi i have cns lymphoma also i am in remission for about five years. i am on a anti depressant.i am  on disabilit also. it did a job on my memory. i still get very stressed and i find myself getting confused some. i dont drive but very close to nome. right now i have trouble with my eyes.my balance is not real great either. would really like to talk

I would love to share our story also. My husband had the exact diagnosis. CNS Lymphoma.  My husband did also pass away This July 25th, 2011. However he did live 2 years and 10 months. it only really recurred once.

I have many many opinions about this brain cancer as it is MY LIFE.. I have done so much research on this exact disease, and have so many books and print outs. we are supposly rare souls that are touched by this monster. Ill share all ive got, what worked and what didnt for us.. Im so very sorry about your husbands dx, so very sorry. where do you live may i ask? which state?

Please remember this primary brain cancer, they told us anyway, have much longer survival rates and i personally know a man, Joe Cunningham, who you can google, that is alive and well and working full time and its been over 25 years.

Linda/ wife of Carmen

Thanks for replying Lulu. My husband is now in remission.It is really hard for him to understand that taking good care of your health is very important. He do not need to work, just part time little work to keep him busy.Stress is causing other problems.I understand it is hard to start feeling normal again. I am working full time, taking care of 6yrs old and taking care of my husband.Emotio nally, it is hard to come back to normal.Please pray for us.

Hi Linda, Thanks for replying back. Thank God my husband is little back to normal.Emotio nally,he is not very strong person.We are in California. Where you are from?