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.
I had the same treatment protocol as you mention, but many more than 7 rounds of high dose MTX. For the first several months, I want to say I was in the hospital every 2 weeks for four to five days depending how quickly the MTX passed. After doing every other week, I did every four weeks. The whole thing went on for eleven months. I was 55 when I was diagnosed, so slightly younger. I guess the biggest thing is that I was tired all the time. I think every medication I took either gave me constipation or diarrhea. They discussed a stem cell initially, but I responded really well to treatment. It was confirmed by a few different docs that it was not required, and they wanted stem cell as a back up in the event of reoccurrence. As a former patient, I recommend that you are there for him and be positive. The best thing I ever heard from Mayo was that this CNS NHL is curable, so I always knew in the back of my head I’d make it through despite how miserable I may have been on any particular day. Let him do for himself as much as he can as well. There is a lot I don’t remember because I was so very sick. My husband filled in many blanks for me. As a Cancer patient, i just wanted to feel normal and have people treat me normally and not pity me. I also felt guilty because my husband had to give up part of his life to help me. He never said a word about it, so it was a burden I placed upon myself. I know it was unfounded. I hit my five year mark in 2021. Good luck to you and your dad. Feel free to be in touch if you want to talk about anything more specifically.
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?
My dad (just turned 66 a few days ago) had a seizure on 4/21/22 and was admitted to the hospital where they found a 1cm lesion deep in his temporal lobe. They did a brain biopsy on 4/27 where we received the frozen section results that confirmed B cell CNS lymphoma. He started high dose methotrexate on 5/4 inpatient with rituxan. He cleared the chemo after 5 days and they have him on oral temozolomide during outpatient (I believe 300mg for 5 days). He’s going back for his second round of chemo on Wednesday. I see some other people on here with similar diagnoses and I would just love to hear more stories, advice, what to expect. This is all so new and I’m trying to learn as much as I can, it feels like the only thing I can do aside from being there to support him. One thing I want to ask his doctor next is if they plan on doing a stem cell transplant, they haven’t mentioned anything about one but I see it being mentioned a lot for consolidation therapy. They’ve only said he has 7 rounds of the HDMTX and then 2 rounds of some other chemo that is apparently much worse than the HDMTX (I don’t recall him saying what it will be or at least I can’t remember). Thanks for anyone’s reply, I appreciate it!
The stem cell transplant is not used for patients above 65 and it depends on the physical condition.
My wife had an HDM-RVP treatment: 8 times for 4 days in hospital with 2 weeks in between the treatments . The methotrexate infusion lasts only 2 hours but the flushing takes 3 days to bring down the methotrexate level below 80.
(High dose Methotrexate, Rituximab, vincristine, procarbazine)
She was given anti nausea medication (Zofran) but did not need it.
After 4 treatments a brain MRI was taken and it showed a complete response to the therapy. No lesions visible anymore.
She then was given a break of 1 month and thereafter started the outpatient consolidation therapy ( to prevent short term relaps) with cytarabine: 2 infusions (2hours)with 2 weeks in between them. Steroids are added to reduce the neurotoxicity. Every 3 days a blood draw is taken to monitor blood counts and platelets. My wife had to get a platelet transfusion once because levels had dropped to very low levels after a week of the first cytarabine infusion(risk of internal bleeding). The treatment had a negative impact on motor skills/ gait-balance). Fall risk!
The treatment is followed up by ‘expectant observation’ with contrast MRI every 2 months with probably reduced frequency after a year without recurrence.
There is not much information on progression free survival. I saw randomized trial data which indicated 5 years on average.
Oncologists are careful using the term cured.
My dad (just turned 66 a few days ago) had a seizure on 4/21/22 and was admitted to the hospital where they found a 1cm lesion deep in his temporal lobe. They did a brain biopsy on 4/27 where we received the frozen section results that confirmed B cell CNS lymphoma. He started high dose methotrexate on 5/4 inpatient with rituxan. He cleared the chemo after 5 days and they have him on oral temozolomide during outpatient (I believe 300mg for 5 days). He’s going back for his second round of chemo on Wednesday. I see some other people on here with similar diagnoses and I would just love to hear more stories, advice, what to expect. This is all so new and I’m trying to learn as much as I can, it feels like the only thing I can do aside from being there to support him. One thing I want to ask his doctor next is if they plan on doing a stem cell transplant, they haven’t mentioned anything about one but I see it being mentioned a lot for consolidation therapy. They’ve only said he has 7 rounds of the HDMTX and then 2 rounds of some other chemo that is apparently much worse than the HDMTX (I don’t recall him saying what it will be or at least I can’t remember). Thanks for anyone’s reply, I appreciate it!
I had the same treatment protocol as you mention, but many more than 7 rounds of high dose MTX. For the first several months, I want to say I was in the hospital every 2 weeks for four to five days depending how quickly the MTX passed. After doing every other week, I did every four weeks. The whole thing went on for eleven months. I was 55 when I was diagnosed, so slightly younger. I guess the biggest thing is that I was tired all the time. I think every medication I took either gave me constipation or diarrhea. They discussed a stem cell initially, but I responded really well to treatment. It was confirmed by a few different docs that it was not required, and they wanted stem cell as a back up in the event of reoccurrence. As a former patient, I recommend that you are there for him and be positive. The best thing I ever heard from Mayo was that this CNS NHL is curable, so I always knew in the back of my head I’d make it through despite how miserable I may have been on any particular day. Let him do for himself as much as he can as well. There is a lot I don’t remember because I was so very sick. My husband filled in many blanks for me. As a Cancer patient, i just wanted to feel normal and have people treat me normally and not pity me. I also felt guilty because my husband had to give up part of his life to help me. He never said a word about it, so it was a burden I placed upon myself. I know it was unfounded. I hit my five year mark in 2021. Good luck to you and your dad. Feel free to be in touch if you want to talk about anything more specifically.
My dad (just turned 66 a few days ago) had a seizure on 4/21/22 and was admitted to the hospital where they found a 1cm lesion deep in his temporal lobe. They did a brain biopsy on 4/27 where we received the frozen section results that confirmed B cell CNS lymphoma. He started high dose methotrexate on 5/4 inpatient with rituxan. He cleared the chemo after 5 days and they have him on oral temozolomide during outpatient (I believe 300mg for 5 days). He’s going back for his second round of chemo on Wednesday. I see some other people on here with similar diagnoses and I would just love to hear more stories, advice, what to expect. This is all so new and I’m trying to learn as much as I can, it feels like the only thing I can do aside from being there to support him. One thing I want to ask his doctor next is if they plan on doing a stem cell transplant, they haven’t mentioned anything about one but I see it being mentioned a lot for consolidation therapy. They’ve only said he has 7 rounds of the HDMTX and then 2 rounds of some other chemo that is apparently much worse than the HDMTX (I don’t recall him saying what it will be or at least I can’t remember). Thanks for anyone’s reply, I appreciate it!
Caregiving is a full time job. It includes nursing duties, nutrition & laundry services , and PT/ entertainment. But it can be done by a healthy partner.
Kids and friends as visitors have a positive impact on state of mind in general. Not spending too much time watching TV is a daily challenge.
In terms of regeneration after resolving the diffuse brain tumor/lesion the exercise regimen seems to be key for regaining some independence.
I read that the Mayo Clinic has a multifunctional team working on nerve regeneration mechanisms. It was mentioned that there is a very large patient base (stroke, MS, Parkinson, progressive palsy, etc) where nerve malfunction plays a similar role. The number of CNS lymphoma patients is relatively small. Is there a way of finding new rehabilitation methods? Probably not or they are in a clinical test phase . Our leading lymphoma institution has not brought it up.
That must be exhausting for both of you. I'm sure she finds it hard to be so dependent on the help of others as well. Do you have others who give you respite?
Caregiving is a full time job. It includes nursing duties, nutrition & laundry services , and PT/ entertainment. But it can be done by a healthy partner.
Kids and friends as visitors have a positive impact on state of mind in general. Not spending too much time watching TV is a daily challenge.
In terms of regeneration after resolving the diffuse brain tumor/lesion the exercise regimen seems to be key for regaining some independence.
I read that the Mayo Clinic has a multifunctional team working on nerve regeneration mechanisms. It was mentioned that there is a very large patient base (stroke, MS, Parkinson, progressive palsy, etc) where nerve malfunction plays a similar role. The number of CNS lymphoma patients is relatively small. Is there a way of finding new rehabilitation methods? Probably not or they are in a clinical test phase . Our leading lymphoma institution has not brought it up.
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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.
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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 ReactionsThat 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?
-
Like -
Helpful -
Hug
1 ReactionThe stem cell transplant is not used for patients above 65 and it depends on the physical condition.
My wife had an HDM-RVP treatment: 8 times for 4 days in hospital with 2 weeks in between the treatments . The methotrexate infusion lasts only 2 hours but the flushing takes 3 days to bring down the methotrexate level below 80.
(High dose Methotrexate, Rituximab, vincristine, procarbazine)
She was given anti nausea medication (Zofran) but did not need it.
After 4 treatments a brain MRI was taken and it showed a complete response to the therapy. No lesions visible anymore.
She then was given a break of 1 month and thereafter started the outpatient consolidation therapy ( to prevent short term relaps) with cytarabine: 2 infusions (2hours)with 2 weeks in between them. Steroids are added to reduce the neurotoxicity. Every 3 days a blood draw is taken to monitor blood counts and platelets. My wife had to get a platelet transfusion once because levels had dropped to very low levels after a week of the first cytarabine infusion(risk of internal bleeding). The treatment had a negative impact on motor skills/ gait-balance). Fall risk!
The treatment is followed up by ‘expectant observation’ with contrast MRI every 2 months with probably reduced frequency after a year without recurrence.
There is not much information on progression free survival. I saw randomized trial data which indicated 5 years on average.
Oncologists are careful using the term cured.
I had the same treatment protocol as you mention, but many more than 7 rounds of high dose MTX. For the first several months, I want to say I was in the hospital every 2 weeks for four to five days depending how quickly the MTX passed. After doing every other week, I did every four weeks. The whole thing went on for eleven months. I was 55 when I was diagnosed, so slightly younger. I guess the biggest thing is that I was tired all the time. I think every medication I took either gave me constipation or diarrhea. They discussed a stem cell initially, but I responded really well to treatment. It was confirmed by a few different docs that it was not required, and they wanted stem cell as a back up in the event of reoccurrence. As a former patient, I recommend that you are there for him and be positive. The best thing I ever heard from Mayo was that this CNS NHL is curable, so I always knew in the back of my head I’d make it through despite how miserable I may have been on any particular day. Let him do for himself as much as he can as well. There is a lot I don’t remember because I was so very sick. My husband filled in many blanks for me. As a Cancer patient, i just wanted to feel normal and have people treat me normally and not pity me. I also felt guilty because my husband had to give up part of his life to help me. He never said a word about it, so it was a burden I placed upon myself. I know it was unfounded. I hit my five year mark in 2021. Good luck to you and your dad. Feel free to be in touch if you want to talk about anything more specifically.
-
Like -
Helpful -
Hug
2 ReactionsMy dad (just turned 66 a few days ago) had a seizure on 4/21/22 and was admitted to the hospital where they found a 1cm lesion deep in his temporal lobe. They did a brain biopsy on 4/27 where we received the frozen section results that confirmed B cell CNS lymphoma. He started high dose methotrexate on 5/4 inpatient with rituxan. He cleared the chemo after 5 days and they have him on oral temozolomide during outpatient (I believe 300mg for 5 days). He’s going back for his second round of chemo on Wednesday. I see some other people on here with similar diagnoses and I would just love to hear more stories, advice, what to expect. This is all so new and I’m trying to learn as much as I can, it feels like the only thing I can do aside from being there to support him. One thing I want to ask his doctor next is if they plan on doing a stem cell transplant, they haven’t mentioned anything about one but I see it being mentioned a lot for consolidation therapy. They’ve only said he has 7 rounds of the HDMTX and then 2 rounds of some other chemo that is apparently much worse than the HDMTX (I don’t recall him saying what it will be or at least I can’t remember). Thanks for anyone’s reply, I appreciate it!
Kippi, you can stay up to date on Mayo Clinic’s advances in regenerative medicine and nerve regeneration on this website:
Center for Regenerative Medicine https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/about
There is also contact information where you can ask about current studies.
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Like -
Helpful -
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1 ReactionCaregiving is a full time job. It includes nursing duties, nutrition & laundry services , and PT/ entertainment. But it can be done by a healthy partner.
Kids and friends as visitors have a positive impact on state of mind in general. Not spending too much time watching TV is a daily challenge.
In terms of regeneration after resolving the diffuse brain tumor/lesion the exercise regimen seems to be key for regaining some independence.
I read that the Mayo Clinic has a multifunctional team working on nerve regeneration mechanisms. It was mentioned that there is a very large patient base (stroke, MS, Parkinson, progressive palsy, etc) where nerve malfunction plays a similar role. The number of CNS lymphoma patients is relatively small. Is there a way of finding new rehabilitation methods? Probably not or they are in a clinical test phase . Our leading lymphoma institution has not brought it up.