Primary CNS Lymphoma

Mary N. said:

Hi dat1000

I was diagnosed with CNS lymphoma 3 1/2 years ago at age 70.  The first time they gave me the high dose MTX and Rituxan,I almost died and my kidneys shut down  Fortunately they started working again and by the time 6 weeks passed the tumors had shrunk by 50 percent so the doc and I decided to try again.  He had told me that we would try something else but I figured why not try again if they had shrunk so much. This time and every time since then my phi has to be at 8.5 before they start the chemo and they maintain it at that phi until I leave the hospital.  This has made a big difference for me.  I don't have any idea about the heart problem as I did not develop any.  I have not tried saffron red flower but in my diet I use many spices.  I have been following a diet that includes many greens and keep my use of protein under control as proteins are very acidic.  Between treatments I eat more protein but for about two weeks before the high dose MYX I limit protein and make myself as alcoholine as possible before I go into the hospital.  I have monthly Rituxan and am not as careful until the 4 month MTX.  

I encourage you to remain positive - this thing can be beaten!  I think diet is important and would add spices and other things that may be of some benefit just nutritionally.  I also believe that we must remain as active physically as we can .  This may be difficult because we end up feeling exhausted.

They also thought that I had had a stroke until the MRI with contrast.

Not sure about your beliefs but I personally feel that prayer is important and I feel that much of my good health is because of the many prayers were offered up for me.  I will keep you and your father in my prayers and hope that the doctors find and appropriate course of treatment for your dad.  Many hugs!! Don't give up.

Thanks Mary for the reply.  We have been staying positive but it seems like he is starting to lose his will.  He has stopped eating and is back in the hospital. The CT scan is showing no new signs of the tumor returning.  He has been through so much and seems to have just come to the point where he is "done". He has had incontinence since having the radiation therapy, His dexamethasone was decreased 50% and three days later his loss of appetite and severe depression started. His dexamethasone has been increased and it's been about a week. He still has minimal appetite. He has been now started on a antidepressant. The dexamethasone withdrawl was horrible. He has lost interest in all his daily activites. Grandkids can't even put a sparkle in his day. It is so difficult to see.  Will continue to update.

Thanks

My father is 71 years old and has had whole brain radiation (chemotherapy had to be stopped due to heart failure). His dexamethasone was just recently decreased and he has now gone into severe depression. He is no longer eating.  They have increased his dexamethasone but this does not seem to have helped at this point. He seems to be losing his will to continue. There are no signs of the tumor returning yet. He is having confusion and incontinence from the radiation therapy.  He is no longer able to drive and feels his independence is gone. It seems like the fight is leaving him. Does anyone have any information that may help?

Thanks.

dat1000 said:

Dexamethasone withdrawl

My father is 71 years old and has had whole brain radiation (chemotherapy had to be stopped due to heart failure). His dexamethasone was just recently decreased and he has now gone into severe depression. He is no longer eating.  They have increased his dexamethasone but this does not seem to have helped at this point. He seems to be losing his will to continue. There are no signs of the tumor returning yet. He is having confusion and incontinence from the radiation therapy.  He is no longer able to drive and feels his independence is gone. It seems like the fight is leaving him. Does anyone have any information that may help?

 

Thanks.

Hi dat1000,

I had primary CNS lymphoma starting March 2012, and I have now been free from it for almost one year. When I was ill I thought a lot about what is important in life. I found that my family is what matters to me. The thing I could to regarding my disease was to keep my spirits up and do my best to endure the treatments, and I hoped that this would keep my family relatively happy. 

I am sorry that your father seems to be losing his will to continue. What you can do is to show your love for him. Hopefully this can make him realize that his problem concerns the whole family and that he should do his best for your sake.

Michbrwn said:

Any Pediatric primary CNS large B- cell lymphoma cases out there

I'm the mom of 14 yo teenager diagnosed May 24, 2013 with large B-cell primary CNSlymphoma. After reading this thread, I can better appreciate the what-felt-like-long-time between his May 14th initial admission for a 2nd MRI to the craniotomy 1 week later on May 21st to the pathologist analyzing the tissue, then phone call on May 24th to start high dose steroids, chemo, chest port placement & by the way, we have to go back in 1 wk after the craniotomy to put an Ommaya reservoir into his skull, so he can get chemo directly into his cerebrospinal fluid (rather than a lumbar puncture every 2 days while inpatient for the chemo rounds). I remember the tumor specialist saying that they couldn't just treat it with steroids because they needed to confirm without doubt what was being treated because if it was Germ cell type, that the treatment would be significantly different. I remember Sat, May 11th, the day before Mother's Day, him saying "Mom, this eye twitching is really bothering me" after he returned from playing in an 8 am travel soccer league game. I looked in his eyes & saw the nystagmus, or involuntary eye twitching when he would look to extremes of down & left. I remember the urgent visit later that morning with the pediatrician offering a stat MRI at a local hospital to be scheduled for Monday or to go directly to the ER - of course, my 13 yo would choose the 1st (who would want to wait in the ER for eye twitching?)! It WAS SO bad for him between the craniotomy through the 1st round (so many unknowns on how he would do) until he got to go home on his 14th birthday June 4th, but he's doing SO well tolerating his 2nd round & this 3rd round (we're here admitted right now for 6 days) without nauseau nor vomiting - Praise God! He's gone swimming at local lakes & pools between chemo & leans on The Lord for His strength. I'm still praying that he continues to do well, but I'm appreciating ALL of the wisdom in your posts. 

His blood count numbers have been awesome so he's had a thumbs up on the lakes - pools - Cedar Point Amusement Park! I couldn't believe the Cedar Point one when he proposed that one to them - they said that it was mainly dependent on his platelet count so that he doesn't bruise from the roller coaster belts/things that strap you in & of course, his ANC or neutrophil count to confirm he's not neutropenic.  I've been absolutely amazed at his blood count numbers & the ability of his body to bounce back & all I can do is pray that it keeps going. He missed his 8th grade Chicago trip that he was SOO looking forward to, and with the docs not cutting off his idea of a Cedar Point trip, I guess I will support him if he can. I can't tolerate those rides - we will see. His case is one of 14 cases worldwide we've been told by UM Mott Hospital because of his age & it being large B-cell in the brain only. Do all of you having this same diagnosis have Ommaya Reservoirs, too? Those chemo infusions are the only ones that make him slightly nauseous (despite the Zofran), but he sleeps immediately after it's done, then he's back to eating & moving around normally.

 

hi, I don't have the ressivior but understand that it gets more of the chemo directly into the brain then by IV which is how I get it.  Your son's age is a big factor and should be a lot of help for him.  Best wishes and hope the treatments work well.  Blessings to you both.  Mary

MarinaL said:

I need help.

My husband was just diagnosed with CNS lymphoma 7/26/13.

He was initially diagnosed with large b cell NHL in January 2013. Went through 6 rounds of RCHOP and after PET in June was 'lymphoma free'.

Well. He started getting really weak in June and I ended up bringing him into the hospital last week and they did a lumbar puncture and found lymphoma

in the spinal fluid. Based on MRI they said it's in the spine for sure, but also checking if it has reached the brain. We should know more by tomorrow. In

the meantime they started the chemotherapy via lumbar puncture I think it's called intrathecal chemo. 

While I think that our oncologists are great, I am sure there are some oncologists out there that specialize in this type of cancer. Any suggestions?

Also, I don't think the prognosis is good. Our oncologist said it's not very good - given that it's a rare type of cancer. He did not want to give us a number or years

but said to not despair (which is hard) and to fight it as much as we can.

I need advice and support right now, anything helps.

My husband is 55 years old, we have a 8month old and a almost 3 year old. I'm the worried wife.

Hi Marina, sorry to hear about diagnosis, my wife had primary cns lymphoma which we were also told was rare and was difficult to get any survival stats from anyone.  I believe they dont want you to dwell on the stats and concentrate on treatment and health.  We had great docs in Mass at MGH, was recommended to go there from docs at Stanford.  They have had very good results treating PCNSL and the care was the best, good luck, and try to stay positive. God Bless..

Donnaann314 said:

St. Josephs or Mayo in Phoenix

OilerNick

 

We are currently undergoing treatment at St. Josephs and thinking we should probably be at Mayo for PCNS?  Also, did you have radiation?  My partner is 65 and worried about that.  He just completed 5 rounds of HDM and appears it shunk in half.

 

any feedback is appreciated.

 

Donna

Donna:

First of all, I apologize for taking so long to respond to your post.  I just saw your question yesterday while waiting for a flight.  To be honest, I don't visit this site too much anymore because I feel terrific and reading these posts causes me some anxiety.  That being said, I've been down the entire road of chemo and ASCT so I do have pretty good insight for those who are yet to go down this path.  I'll put my anxiety aside and start visiting this site again so that I can help answer questions like yours.

As for your question, I was originally diagnosed at St. Joe's and I underwent my first chemo treatment there.  While I feel like the care was excellent, my wife didn't think they communicated enough with us and, as such, I quickly moved over to Mayo Clinic.  I have never once regretted that decision.  Dr. Craig Reeder is my oncologist and Dr. Sylvia Porter is my neurologist.  I can't tell you how terrific and impressive these folks have been.  I seriously doubt that one can get better care anyway on Earth; I ain't kidding.  One thing, however: the food at St. Joe's is really tasty and the food at Mayo is, at best, completely gross.  While that shouldn't way too heavily on your mind it weighs heavily on my mind.

As for radiation, I didn't have it nor was it recommended for me.  For the reasons you probably already know, my doctors told me that they were deferring radiation for someday down the road. God willing, that day will never come.

As of this date, I am about 10 months post ASCT.  While I'm (still) overweight, I'm exercising a lot.  In fact, I'm training for my 6th marathon - 1st post-ASCT - this coming January.  I am also coaching my son's 13U baseball team and going on scout outings with him.  I never stopped working throughout the whole process including while I was in the hospital for 3 weeks last October.  (Work makes the days go by faster.)  For anyone out there reading this post and wondering whether or not they ought to do the ASCT I can tell you that I would do it again; no doubt about it.

If you have any other questions, please feel free to pose them to me.

Regards,

OilerNick

oilernick said:

St. Josephs or Mayo in Phoenix

Donna:

First of all, I apologize for taking so long to respond to your post.  I just saw your question yesterday while waiting for a flight.  To be honest, I don't visit this site too much anymore because I feel terrific and reading these posts causes me some anxiety.  That being said, I've been down the entire road of chemo and ASCT so I do have pretty good insight for those who are yet to go down this path.  I'll put my anxiety aside and start visiting this site again so that I can help answer questions like yours.

As for your question, I was originally diagnosed at St. Joe's and I underwent my first chemo treatment there.  While I feel like the care was excellent, my wife didn't think they communicated enough with us and, as such, I quickly moved over to Mayo Clinic.  I have never once regretted that decision.  Dr. Craig Reeder is my oncologist and Dr. Sylvia Porter is my neurologist.  I can't tell you how terrific and impressive these folks have been.  I seriously doubt that one can get better care anyway on Earth; I ain't kidding.  One thing, however: the food at St. Joe's is really tasty and the food at Mayo is, at best, completely gross.  While that shouldn't way too heavily on your mind it weighs heavily on my mind.

As for radiation, I didn't have it nor was it recommended for me.  For the reasons you probably already know, my doctors told me that they were deferring radiation for someday down the road. God willing, that day will never come.

As of this date, I am about 10 months post ASCT.  While I'm (still) overweight, I'm exercising a lot.  In fact, I'm training for my 6th marathon - 1st post-ASCT - this coming January.  I am also coaching my son's 13U baseball team and going on scout outings with him.  I never stopped working throughout the whole process including while I was in the hospital for 3 weeks last October.  (Work makes the days go by faster.)  For anyone out there reading this post and wondering whether or not they ought to do the ASCT I can tell you that I would do it again; no doubt about it.

If you have any other questions, please feel free to pose them to me.

Regards,

OilerNick

Yeah Nick!

Sten said:

Keeping one's spirits up

Hi dat1000,

I had primary CNS lymphoma starting March 2012, and I have now been free from it for almost one year. When I was ill I thought a lot about what is important in life. I found that my family is what matters to me. The thing I could to regarding my disease was to keep my spirits up and do my best to endure the treatments, and I hoped that this would keep my family relatively happy. 

I am sorry that your father seems to be losing his will to continue. What you can do is to show your love for him. Hopefully this can make him realize that his problem concerns the whole family and that he should do his best for your sake.

I am so sorry that your father is having such difficulty.  I really can't say anthing really helpful but wanted you to know that I was thinking about you and your father.

SethfromMaryland said:

New to the Group - PCNS Diagnosed - Curious about Stem Cell

OilerNick,

Thanks for the information. I'm 42, was diagnosed in July with B-Cell CNS lymphoma, had the tumor removed, went through 8 rounds of Methotrexate with Rituxam and am now in remission. We are currently trying to figure out if I should also have stem cell transplant. I'm a bit worried about the high dose chemo that's used for the stem cell transplant and how it all works. If you're back on line at all, feel free to share your experience.

thanks,

Seth

Hi Seth,

I am 69 and I was diagnosed with primary CNS lymphoma in March 2012. I was treated first with cortisone and then with Methotrexate, antibodies, and other chemo three times four days with about one month's intermission between treatments. Then my stem cells were collected, and I was given the BEAM high dose chemo for about one week, and at the end of that week I got a transplant of my own stem cells to restore my bone marrow which was destroyed by the high dose chemo.

After the high dose chemo I had the following experience:

- After about three weeks I could take very short walks outdoors

- After about 2 - 3 months my stomach was fairly in order again

- After six months I felt OK but not quite as strong as before

- After one year I was in reasonably good shape and could walk with my wife in the Norwegian Mountains and go to other countries like Spain and Greenland

Stem cell transplant is the best treatment for primary CNS lymphoma, and it gives a good chance of long term survival, which you can see from links in this thread. For your comfort, I repeat these links here below: 

http://annonc.oxfordjournals.org/content/early/2012/04/03/annonc.mds059.abstract

http://www.ncbi.nlm.nih.gov/pubmed/22023529

http://www.ncbi.nlm.nih.gov/pubmed/21749848

https://bmt.confex.com/tandem/2013/webprogram/Paper2711.html

http://www.ncbi.nlm.nih.gov/pubmed/22473593

If I had a choice now between stem cell transplant or not, I would certainly choose stem cell transplant. The high dose chemo takes long to recover from, but I think that is is definitely worth taking.

I will put this reply both near your post and at the end of this thread, so it will be easy to find.

Good luck!

Sten

SethfromMaryland said:

New to the Group - PCNS Diagnosed - Curious about Stem Cell

OilerNick,

Thanks for the information. I'm 42, was diagnosed in July with B-Cell CNS lymphoma, had the tumor removed, went through 8 rounds of Methotrexate with Rituxam and am now in remission. We are currently trying to figure out if I should also have stem cell transplant. I'm a bit worried about the high dose chemo that's used for the stem cell transplant and how it all works. If you're back on line at all, feel free to share your experience.

thanks,

Seth

Hi Seth,

If you check out my posts, you will have lots of info about stem cell transplant.  Hub's was in July of 10.  He is now almost 3 and a half yrs with No Evidence of Disease.

I check back in here at least once a week and if there is anything I can do, please let me know.  His transplant was at Sloan Kettering in NYC.  I am sure it saved his life!