I was diagnosed with Primary CNS Lymphoma iin March 2016, almost 7 years ago. I was in and out of hospital 80 days. But by the middle of September I was done. I am This coming week I will be 77. I had the high levels methotrexate but did not get the auto lymphocyte cells treatment. I was on the older group to get this disease and, as of now, I have SURVIVED! The only i would like to ask those that have been down this road is, have you noticed how you may think your personality has changed?
If you want to know my full story, send me your email address. In summary, I was diagnosed with primary CNS lymphoma in March 2019 at 58 years of age. I spent a month in hospital in Denver with no diagnosis. I was airlifted to Mayo & diagnosed in 5 days. I was on MRT chemo for 6 months, then stem cell transplant. I owe my recovery to God & doctors at Mayo.
I was never unconscious, like your mother. I’m praying for her recovery.
Ann, I don’t know if it’s appropriate to hand out your number to someone on this forum or not. This was my exact diagnosis with added I formation...Large B cell CNS Lymphoma, I lost motor skills and cognitive skills. Immediately after my brain biopsy, I couldn’t even hold a sandwich or use utensils. I would love to hear your story and share mine. I will tell you that mine has a happy ending. Two more clean MRIs, and I’ll be considered cured. If his treatment is the same as mine, he’s got a tough year ahead of him. If you would like to talk,I’m very open to it. Let me know, and I can give you my contact information. It’s really an overwhelming time.
Hey glad to here about your recovery
My mother is currently suffering from this disease and she has been unconscious because of it for more than one month now with occasional response so I would also want to talk to you if possible. I would love to know the entire story and the treatment you had
I’m so sorry to hear of your experience. God rescued me from CNS Lymphoma with 6 months of chemo, then stem cell transplant. I am cured. I will pray for you that you will feel God’s comfort. Psalm 23:
The Lord is my shepherd; I shall not want. He makes me lie down in green pastures. He leads me beside still waters. He restores my soul. He leads me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows. Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.
Thank you very much for your prayers. May I ask at what age you were diagnosed with CNS lymphoma? My understanding is that this option is no longer available after a certain age.
My partner of 15 years was recently diagnosed with PNS Lymphoma. In spite of being 84 years old, his neurosurgeon proposed a craniotomy and removal of the tumor in his left temporal lobe; otherwise, he said that my partner’s quality of life would be jeopardized. He said that he was in general good health so surgery was recommended. About a month before diagnosis, his symptoms were nausea, loss of balance, forgetfulness (he couldn’t figure out the functions of his cellphone, would forget the codes to his security alarm system and the garage, had difficulty with simple math) and not being able to articulate what he wanted to say. He went for surgery on December 1 and now is suffering from extreme confusion and delirium. The prognosis is very grim and the hospital medical team are now proposing moving him to palliative care. Needless to say, we, his family, are devastated (an understatement). He was someone, who in his 80’s golfed twice a week, fished, hiked, traveled extensively and was living an active, beautiful life. The whole thing happened so suddenly and quickly and his quick deterioration after his surgery was totally heartbreaking and overwhelming.
I’m so sorry to hear of your experience. God rescued me from CNS Lymphoma with 6 months of chemo, then stem cell transplant. I am cured. I will pray for you that you will feel God’s comfort. Psalm 23:
The Lord is my shepherd; I shall not want. He makes me lie down in green pastures. He leads me beside still waters. He restores my soul. He leads me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows. Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.
My partner of 15 years was recently diagnosed with PNS Lymphoma. In spite of being 84 years old, his neurosurgeon proposed a craniotomy and removal of the tumor in his left temporal lobe; otherwise, he said that my partner’s quality of life would be jeopardized. He said that he was in general good health so surgery was recommended. About a month before diagnosis, his symptoms were nausea, loss of balance, forgetfulness (he couldn’t figure out the functions of his cellphone, would forget the codes to his security alarm system and the garage, had difficulty with simple math) and not being able to articulate what he wanted to say. He went for surgery on December 1 and now is suffering from extreme confusion and delirium. The prognosis is very grim and the hospital medical team are now proposing moving him to palliative care. Needless to say, we, his family, are devastated (an understatement). He was someone, who in his 80’s golfed twice a week, fished, hiked, traveled extensively and was living an active, beautiful life. The whole thing happened so suddenly and quickly and his quick deterioration after his surgery was totally heartbreaking and overwhelming.
I shared your experience with our hand and shoulder therapist. She is not that optimistic about recovering and developing strength. They all say it’s about nerve regeneration.
Her immediate question was: were you able to raise your arm/hand(hands) after treatment or even during the treatment phase?
My wife cannot raise/move her left arm and her left hand fingers can barely move.
That is a helpful summary of your illness history. Encouraging without downplaying the challenges.
2 questions:
1. did you experience nausea or diarrhea after the finalization of the chemotherapy? If yes , what supportive measures were taken?
2. Did the CNS lymphoma effect your leg and hand functioning? If yes did Physiotherapy alone improve your condition and how long did it take to partially or even fully recover?
I also received Zofran after the MTX. I was on many medications including an antibiotic and an antiviral medication. I think it was the combo of the medicines and you never knew how your body would react. I can’t recall how many days after the MTX, I had to do the oral chemo (Temador). My body was already worn out, and it was just a pile on top of that. OTC meds such as Imodium -D and Metamucil.
I was highly impacted after my brain biopsy. I could not hold a sandwich, use utensils and listed to the left when I would walk. While at Mayo, I had both OT and PT. Everything cleared up with time. If you met me today, you’d never have a clue that I had been so sick. I will say after my almost year of treatments, I had to work on balance a lot. I started with a personal trainer that helped me immensely after I was done receiving treatments.
I did want to comment on something @kippi1950 said about oncologists not using the word cured. At Mayo, they did use the word cured. After being at Mayo, I had to return to my home state and receive treatment by a doctor Mayo conferred with in advance of my return. At my 5 year appointment, she said that you are only cured when you die of something else. I now just say I hit my 5 year mark of being Cancer free. I do think I’m cured of CNS Lymphoma. It’s clear to me that I could develop any other kind of Cancer as anyone can. After you spend a ton of time in the hospital and at a Cancer Center, it’s apparent that Cancer does not discriminate.
Connect
Connect
Like
Helpful
Hug
I was diagnosed with Primary CNS Lymphoma iin March 2016, almost 7 years ago. I was in and out of hospital 80 days. But by the middle of September I was done. I am This coming week I will be 77. I had the high levels methotrexate but did not get the auto lymphocyte cells treatment. I was on the older group to get this disease and, as of now, I have SURVIVED! The only i would like to ask those that have been down this road is, have you noticed how you may think your personality has changed?
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with CNS in August 2019. I would like to hear more about your story/experience please.
If you want to know my full story, send me your email address. In summary, I was diagnosed with primary CNS lymphoma in March 2019 at 58 years of age. I spent a month in hospital in Denver with no diagnosis. I was airlifted to Mayo & diagnosed in 5 days. I was on MRT chemo for 6 months, then stem cell transplant. I owe my recovery to God & doctors at Mayo.
I was never unconscious, like your mother. I’m praying for her recovery.
Hey glad to here about your recovery
My mother is currently suffering from this disease and she has been unconscious because of it for more than one month now with occasional response so I would also want to talk to you if possible. I would love to know the entire story and the treatment you had
I was 58 when diagnosed.
Thank you very much for your prayers. May I ask at what age you were diagnosed with CNS lymphoma? My understanding is that this option is no longer available after a certain age.
I’m so sorry to hear of your experience. God rescued me from CNS Lymphoma with 6 months of chemo, then stem cell transplant. I am cured. I will pray for you that you will feel God’s comfort. Psalm 23:
The Lord is my shepherd; I shall not want. He makes me lie down in green pastures. He leads me beside still waters. He restores my soul. He leads me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows. Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.
-
Like -
Helpful -
Hug
1 ReactionMy partner of 15 years was recently diagnosed with PNS Lymphoma. In spite of being 84 years old, his neurosurgeon proposed a craniotomy and removal of the tumor in his left temporal lobe; otherwise, he said that my partner’s quality of life would be jeopardized. He said that he was in general good health so surgery was recommended. About a month before diagnosis, his symptoms were nausea, loss of balance, forgetfulness (he couldn’t figure out the functions of his cellphone, would forget the codes to his security alarm system and the garage, had difficulty with simple math) and not being able to articulate what he wanted to say. He went for surgery on December 1 and now is suffering from extreme confusion and delirium. The prognosis is very grim and the hospital medical team are now proposing moving him to palliative care. Needless to say, we, his family, are devastated (an understatement). He was someone, who in his 80’s golfed twice a week, fished, hiked, traveled extensively and was living an active, beautiful life. The whole thing happened so suddenly and quickly and his quick deterioration after his surgery was totally heartbreaking and overwhelming.
-
Like -
Helpful -
Hug
5 ReactionsI shared your experience with our hand and shoulder therapist. She is not that optimistic about recovering and developing strength. They all say it’s about nerve regeneration.
Her immediate question was: were you able to raise your arm/hand(hands) after treatment or even during the treatment phase?
My wife cannot raise/move her left arm and her left hand fingers can barely move.
-
Like -
Helpful -
Hug
2 ReactionsI also received Zofran after the MTX. I was on many medications including an antibiotic and an antiviral medication. I think it was the combo of the medicines and you never knew how your body would react. I can’t recall how many days after the MTX, I had to do the oral chemo (Temador). My body was already worn out, and it was just a pile on top of that. OTC meds such as Imodium -D and Metamucil.
I was highly impacted after my brain biopsy. I could not hold a sandwich, use utensils and listed to the left when I would walk. While at Mayo, I had both OT and PT. Everything cleared up with time. If you met me today, you’d never have a clue that I had been so sick. I will say after my almost year of treatments, I had to work on balance a lot. I started with a personal trainer that helped me immensely after I was done receiving treatments.
I did want to comment on something @kippi1950 said about oncologists not using the word cured. At Mayo, they did use the word cured. After being at Mayo, I had to return to my home state and receive treatment by a doctor Mayo conferred with in advance of my return. At my 5 year appointment, she said that you are only cured when you die of something else. I now just say I hit my 5 year mark of being Cancer free. I do think I’m cured of CNS Lymphoma. It’s clear to me that I could develop any other kind of Cancer as anyone can. After you spend a ton of time in the hospital and at a Cancer Center, it’s apparent that Cancer does not discriminate.
-
Like -
Helpful -
Hug
2 Reactions