Primary CNS Lymphoma

Mary N. said:

My progress

hi Dan, I was originally diagnosed with PCNS NHL in Jan of 2013 and was 70 at the time.  It came as a complete surprise as the only thing noticed was my right eye blinking white/black.  I had an eye exam nothing.  about two weeks later I was going to the hairdresser when the blinking became frantic and i became very weak, walked in an asked for her to call an ambulance and was rushed to Fresno where I had a seizure in the emergency room.

 They found two tumors deep in the left side of my brain.l  Since then, I have only been treated with high dose MTX and rituxan.  At first I had it every 6 weeks and after the first time my tumors shrunk by half. One tumor was gone in about 4 months and the other was larger and more dense and it was gone leaving a bit of brain damage.  Nothing has become active since about 3 years ago.

 I have monthly Rituxan and every four months have MTX and a MRI.  I was allowed to drive after 6 months and went back to work as a counselor at school in 9 months.  I decided I would again retire this June because work included about a 2 1/2 hour commute round trip.  i am delighted to hear of other successful treatments and individuals who are still surviving.  I have been told that the stats are not good for someone my age.

 Is there a age barrier about the stem cell transplants?  My doc has never mentioned it as a way to treat this and it may be that he thinks I physically couldn't handle it.  I don't know but will talk with him this month when I go in for the Rituxan.  Thanks for this thread.

 

Mary

Hi Mary,

i was reading your post and happy tomhear how well you did and hope continuing good health. Its interesting tomhear the different protocols for the same disease. My husband started with rituxan following week MTX and he is now getting his 3rd round of MTX. Round 2 he had a half day of nausea and vomiting then felt better. I see you get MTX monthly only. Imwould think this is easier on the body. We are being treated in Israel where my husband had a seizure while on business. he is unable to fly so we must remain here. Doctors have not mentioned any further treatment for stem cells. He will have an MRI and I pray his tumor is gone!

Younique said:

I didnt know you were in the

I didnt know you were in the hospital now. Glad your doing well. How many MTX have you had? Danny goes formhis 3rd MTX this Sundaynor Monday. Here they don't release you from hospital until the levels are .00 so its usally between 5-7 days.

how aremyour side effects from MTX? Curious what to,expect from round 3.

hope you are released and feel better quickly, 

Its the fouth day since MTX and Procarbazine treatment. Still in hospital count today .14 so not being released. Praying for tomorrowS release but its a slim chance! Only slight nausea this time but no desire to eat! That's understandable!

hope everyone reading the thread is home and feeling great!

Younique said:

I didnt know you were in the

I didnt know you were in the hospital now. Glad your doing well. How many MTX have you had? Danny goes formhis 3rd MTX this Sundaynor Monday. Here they don't release you from hospital until the levels are .00 so its usally between 5-7 days.

how aremyour side effects from MTX? Curious what to,expect from round 3.

hope you are released and feel better quickly, 

Beside the waiting game, Metrotexate can be hard on the kidneys, that's why they keep you in fluids, give you recovery pills after (lecouvorin) and check the urine PH regulary. So far I have recieved 10 doses and I have 2 more to go, I haven't felt major side effects. The lost of apetite and sensitivity to the light I don't know to what drug pinnned it on. Regarding apetite, last week I lose 9 pounds in my admission for metrotrotexate, I was out Sunday. By Thursday I've regained every bit of it. Hospital cooks, God Bless them, but they remind me of the Food Network Series "Worst Cooks in America".I believe that Hospital Admimistrators need to address the QUALITY OF FOOD, COME ON THIS IS A MULTI BILLION DOLLAR INDUSTRY.I will reccommend to put every member of the board of every Hospital around the nation on a 2 week patient's diet.That will take care of it.

Younique said:

Sense of humor

It's so nice to see you keep a sense of humor through this. Here is the food is so awfull my husband wont even allow mem to open the try!! He hates the smell.  If not for my daughter bring us food we would starve...lol. Actually the hospital doesnt bring the wife anything!!! There is a coffee shop I get a few things from. Cofee is most important!!!

Hoping to hear of complete recovery for all!.

 

janie

Here is the same they have some items for sale at the cafeteria and they have some decent options specially in Sandwiches and salads. We order from multiple nearby restaurants both for my wife and me and they allow it. I only know of a hospital in Orlando that sold discounted food trays for caregivers. Tell your husband that I fully understand how he feels, by the end of my treatment last year sometimes I didn't order at all or if they delivered it I asked them to take it away because I couldn't stand the smell...I developed a delivery cart phobia as soon as I heard the sound of the cart wheels my stomach turned, all will pass is going to get better. 

Vic 

Sten said:

BEAM treatment

Victelio,

 

You asked me why I got the BEAM treatment. Well, it seems to be the standard high dose chemo treatment here in Sweden.

It must be succeeded by autologous stem cell transplant, because it destroys the bone marrow.

 

Best wishes,

Sten

 

Hi Sten 

Thanks for the info apparently recently they are using Thiotepa, Busulfan and Carmustine for PCNS Pre ACST Trasplant because some Dr's believe those drugs have a better penetration of the Brain Blood Barrier I know that Beam is the more commonly use so far. I have a consult on Sloan Ketering in NY and will ask the question .

HAPPY TO HEAR ABOUT YOUR CONTINIUNG REMISSION

Viv

Hey Dan

Just got discharged cleared within 60 hours great idea with the spreadsheet, I argued succesfully for a half time report so once I get to 1.2 or lower they will re test 12 hours later instead of 24. Well we understand our new normal and we need to keep the faith and stay on course. The consult was great and so far the salvage chemo has been pretty uneventful no side effects beside some extra hairs on the sink and pillow. Small price to pay for our health. June 9th is the MRI and if I respond like i know I will then start the process for ASCT.

Stay healthy

Vic

PS What conditioning chemo they use prior to your ASCT?

Dear Everyone:

I just wanted to let you know that last week I had my latest brain scan and it remains perfectly clear. At this point - roughly 18 months post-ASCT - I feel perfectly fine. I am working full-time (making good money once again), coaching baseball and I’m jogging and doing Orange Theory Fitness (a/k/a circuit training) several times a week. What is most important, my daughter is finishing up her sophomore year in high school and my son is finishing up his seventh grade. If I can live long enough to see one or both of them get out of the house, then I will be extremely happy.

The reason that I share this information with you is two-fold: First, there is, in my mind, no doubting the fact that ASCT is the way to go for folks, like me, who have this disease. Second, if you find yourself with this disease do not allow yourself to get overwhelmed with fear. I can assure you that there is a light at the end of the tunnel and the resumption of a normal life is a very real possibility.

And, on that note, I got to get back to work...

OilerNick

oilernick said:

Curious about Stem Cell

Seth:

I HIGHLY RECOMMEND that you do the stem cell transplant.

In my case, the high dose chemo was administered over three days in Octotober 2012 at the Mayo Clinic in Phoenix.  On those days, chemo was administered to me for several hours and it wasn't a whole lot different than what you already went through.  Was it pleasant?  No it was not.  Was it as bad as I envisioned it might be?  NOT AT ALL.  The three days came and went and with the exception of some nausia and a complete lack of appetite for a few weeks, it really wasn't that bad.  (Being holed-up in a hospital room for three weeks really stinks, however.)  I was just about your age when I did it and I think I bounced back from it all quite well.  I tried to stay active while in the hospital and I spent alot of time riding on the stationary bike.  I HIGHLY RECOMMEND that anyone going down this path do the same; it's as good for your attitude as it is your health.

It wasn't long after getting out of the hospital - a few days - that I started taking long walks, then - a few weeks later - little jogs.  I went back to work about a week after getting out of the hospital (but for a few weeks I went at night and on the weekends when noone was around).  My hair fell out after I returned home from the hospital but that's not a big deal for us guys.  I had a crewcut before I went into the hospital so that family and friends weren't stunned by my appearance.  My hair grew back in due course.

I am now about 15 months post ASCT and I feel great (but I'm overweight).  I ran 7 miles today and I plan to do it again tommorrow, before I watch football.  A few weeks ago I had a brain scan and it came back totally clear.  To be honest, I wasn't suprised.  I knew what I felt like when I was first diagnosed and, in particular, I remember my fingers tremoring and my blurred vision.  That feeling is completely gone at this point as is 99% of the tremoring.  Had my scans come back positive for a relapse I would have been greatly surprised.

As far as being worried about the high dose chemo, my doctor warned me (during his CYA conversation) that the ASCT could kill me but that 95% of the patients who go through the procedure live through it.  While a 1 in 20 chance of kicking the bucket is a far bigger risk than I cared to take, I asked my doctor whether it was worth the risk and he said it absolutely was.  In my opinion, he was absolutely correct.  No doubt about it.  Don't let your concern over the chemo and the whole ASCT process take your eye off the ball; getting rid of the cancer or, at a minimum, kicking the can down the road vis-a-vis a relapse.  I've got two kids, the younger one is now in 7th grade.  If I can live long enough to get him out of the house and on with his life, I will be complely satisfied with the outcome of my ASCT irrepective of what happens to me afterward.  After all, Seth, we are all on borrowed time.

Best of luck to you, Seth.  I look forward to hearing from you in the weeks, months and years to come.  In the meantime, you will be in my prayers this evening before I go to sleep.

Regards,

OilerNick

OilerNick,

I know it's been a long time since you sent me informaiton about the ACST. I really appreciate your recommendation. At the time, I was just in the middle of my 1 year of methotrexate and rituxam therapy and was searching for the next steps. I met with the Stem Cell transplant expert at Johns Hopkins and he recommended that I do not go in for ACST at this time. So far, things have been going well for me. I'm over 1 year out from diagnosis and almost 1 year out from the official notificaiton of being in remission. I'm still going in for bi-monthly ritxam infusions and MRI. Hopefully, the next scan will continue to show No Evidence of Disease. I also recently completed the Ride to Conquer Cancer (143 miles in Maryland) which, hopefully, is a good sign. 

Hope you and everyone else are doing well.

Thanks,

Seth

SethfromMaryland said:

Stem Cell Translplant -Follow Up

OilerNick,

I know it's been a long time since you sent me informaiton about the ACST. I really appreciate your recommendation. At the time, I was just in the middle of my 1 year of methotrexate and rituxam therapy and was searching for the next steps. I met with the Stem Cell transplant expert at Johns Hopkins and he recommended that I do not go in for ACST at this time. So far, things have been going well for me. I'm over 1 year out from diagnosis and almost 1 year out from the official notificaiton of being in remission. I'm still going in for bi-monthly ritxam infusions and MRI. Hopefully, the next scan will continue to show No Evidence of Disease. I also recently completed the Ride to Conquer Cancer (143 miles in Maryland) which, hopefully, is a good sign. 

Hope you and everyone else are doing well.

Thanks,

Seth

Dear Seth & Fellow Survivors:

I just wanted to let you know that I am now two years post-ASCT and I feel terrific. This morning I ran in my first half-marathon post-diagnosis and I had a better finish time than before I had cancer. I’m still coaching my (now 14-year old) son’s baseball team and my business continues to recover from the recession and my illness.

Three take aways: (1) in my opinion, ASCT is the way to go; no ifs, ands, or buts; (2) for those of you into such things, prayer appears to work; and (3) I don’t know if I’ve beaten this disease but what I do know is that I beat it today and I see no reason why I won’t beat it tomorrow.

Keep up your fight and I’ll keep up mine. The finish line may be further off than any of us can imagine.

OilerNick

Sten said:

Experience from stem cell transplant

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

 

My mother had symptoms of dizziness, nausea, lethargy and sleepiness since August 2014.  Her doctors requested endoscopy and colonoscopy, and diagnosed her with hiatal hernia and allowed her to travel abroad in November 2014.

While abroad her health degenerated, until she fell and required stiches.  She was in two different hospitals for over two months outside the US, until they diagnosed her with Primary CNS Lymphoma.  After a long struggled to get her home, we reached Inova Farifax hospital.  In March 2014, they performed a biopsy to confirm CNS Lymphoma and said the only course of treatment available to my mother was 10 days of maximum radiation.

She is now at home with me for hospice, and I need help to identify who we can approach for a second opinion and if she can benefit from the stem cell transplant.

Do you have any suggestions?