My husband has Primary Lymphoma :(

Younique

Our lives have changed in a flash when I received a call from my husband (away on a business trip) that he was taken to the hospital and they found a tumor in his brain. I immediately booked tickets for my daughter and myself to get to him. He had a small seizure and was stuttering when a co-worker  noticed and called 911. When we arrived he seemed at first glance to be fine. Slowly we noticed his memory (short term) was not always clear. He was scared, moody and quiet. The quiet was his thoughts not being able to be verbalized! His CT showed a tumor they believed was non cancerous and operable! The day of surgery the MRI showed a different story! The tumor was growing inside and could not be operated on. We were told LYMPHOMA and wasn't told much more at that time. 

He has now had 2 chemo treatments plus mabthera (retuximba). Steroids he was taking had shrank the tumor in half giving us a little hope and some of his memory back. One day we feel hopeful the next day not as much! It's a roller coaster ride for us all. His first chemo went so well. The second he had a 1/2 day of feeling sick and blamed the food! It wasn't the food it was the meds!!! It scares me to think what each treatment will bring! I stay the 5-7 days and nights with him in the hospital and it is wearing me out mentally and physically. please don't take this wrong...I'm in a Foreign Country, not speaking the language, not knowing the system, socialized medicine etc etc. My hope is to beable to have him fly home with all the family support/love around him.

 

Sten

There is hope

Hi Younique,

Yes, it is a tough situation when such a disease strikes your family.

But there is hope.

I got the same trouble as your husband, Primary CNS (central nervous system) lymphoma (PCNSL) in March 2012. I went through the same first treatment. I have now been free from cancer almost 2 years.

Nausea is a normal reaction to chemo. It is a good sign that steroids shrank the tumour in half - it was the same for me.

After three 4 day rounds of chemo, my stem cells were collected. Then I got high dose treatment with chemo, and then I got my stem cells back in an autologous stem cell transplant (ASCT). The high dose chemo was tough on my body. It took 3 months before my stomach was in order again and 6 months to regain strength. But this treatment is the best to prevent a relapse, and the result motivates the suffering. I now take pills of the chemo Temodar 4 days every months for a total of 2 years (with 6 months to go), to prevent a relapse. These 4 days I am tired and feel some nausea, but I know I need to take those pills. 

I wish you hope and all the best!

Sten

Mary N.

Sten said:

There is hope

Hi Younique,

Yes, it is a tough situation when such a disease strikes your family.

But there is hope.

I got the same trouble as your husband, Primary CNS (central nervous system) lymphoma (PCNSL) in March 2012. I went through the same first treatment. I have now been free from cancer almost 2 years.

Nausea is a normal reaction to chemo. It is a good sign that steroids shrank the tumour in half - it was the same for me.

After three 4 day rounds of chemo, my stem cells were collected. Then I got high dose treatment with chemo, and then I got my stem cells back in an autologous stem cell transplant (ASCT). The high dose chemo was tough on my body. It took 3 months before my stomach was in order again and 6 months to regain strength. But this treatment is the best to prevent a relapse, and the result motivates the suffering. I now take pills of the chemo Temodar 4 days every months for a total of 2 years (with 6 months to go), to prevent a relapse. These 4 days I am tired and feel some nausea, but I know I need to take those pills. 

I wish you hope and all the best!

Sten

Hope

Younique,

I was dianosed with Primary CNS non hodgkins lynphoma back in 2010.  As Sten said there is hope!!  I am older and not eligible for a stem cell transplant but basically my two tumors were gone in about 9 months and I have had clean scans since then. Gradually I got back my short term memory and can do anything that I could do before now.  I returned to work as a counselor at school part time after 9 months.  (Now I'm retired and being Grandma)  I wish you both the best.  The 4-5 days in the hospital for the chemo is for the birds but it is worth it.  I had very up and down days, especially before the tumors were gone.  I hope you will soon be home and that his treatment continues to be effective.

 

 

Mary