Husband diagnosed with Primary CNS Lymphoma (brain) - help

missymet31

Hello,

My husband has recently been diagnosed with PCNSL and is undergoing his first chemo treatment in Sloan Kettering as we speak. Is there anyone out there who knows anyone with this disease? His chemo regimin will consist of R-MVP treatments every 10 days for 5-7 cycles and then a low dose of radiation. When that's all done, they will do an MRI and we pray that it worked. He is 48 years old and we have 2 children, 15, and 13. One day my life was fine and the next.....I'm still in a state of shock. He actually had surgery to have it removed from his cerebellum since at first they thought it was an Astrocytoma, but the extended path report came back as this rare lympyhoma. I was hoping for some success stories, but I can't seem to find anyone with this disease. Thanks to all for listening.

Missy from Long Island

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

missymet31,
Here's an article giving an overview on PCNSL. I'm not sure if this is what you're looking for and it may provide too much info. I hope it helps. Best wishes.

http://www.emedicine.com/neuro/topic519.htm
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

hoping4answers · Regular Joined: 11 Sep 2009 Posts: 20 Location: Canton, GA

missymet31

I am in the process of trying to identify what has been going on with me for the past 8 months. I hvae been to hundreds of appts. with about 10 different specialist, with NO answers. I am now on the path to trying to confirm diagnosis of PCNSL. I am 31YR with 3 kids, I don't know what to think at the moment...

Please post updates on your husband, and any information I learn along the way I will share with you as well. i wish you and your husband the best.

missymet31 · Posted: Tue Sep 22, 2009 9:06 am Post subject: PCNSL - Hoping4answers

Hello Hoping4answers,

I'm so sorry about what you are going through...you must be terrified. PCNSL is difficult to diagnose but 8 months is way too long. We have a specialist in NYC, Lisa DeAngelis from Memorial Sloan Kettering, who has found a successful way to treat this rare type of cancer. The research is still pretty new but it's hopeful. Be careful what you read on this subject on the Internet since most of it is outdated.

When my husband's MRI showed the tumor, he went for a biopsy. The surgeon ended up removing the tumor (as much as he could) because he thought it was a type of Astrocytoma. Once the extended path reports came back weeks later, the diagnosis was made. Luckily the surgeon knew about Lisa DeAngelis and sent us to see her. They took my husband in immediately since they were doing a study on this type of cancer and the new treatment. They told us that surgery would not help. The treatment calls for high doses of a chemotherapy cocktail with low doses of radiation after. It's been 2 1/2 years since the diagnosis and my husband is fine. He goes for MRI's every 4 months and so far so good...thank god.

If you would like to speak on the phone, then let me know. I wish you the best of luck. Please keep in touch.

Missy

hoping4answers · Regular Joined: 11 Sep 2009 Posts: 20 Location: Canton, GA

Thank you. Yes it is a long time. it started with headaches, nausea and dizziness. We did an MRI and found lesions and demyelintaion, this lead them to believe it was MS although I had no other symtoms. I have had dozens of tests. The spinal tap pretty much convinced the doc's that it wasn't mS, since all of the other tests were also negative. They did find lymphocytes in my CSF, as well as in my lymph nodes, which is leading me down my current path. I will see a neuro opthamologist tomorrow...and a neuro surgeon shortly after that.

I have recently been having extremely high blood pressure, for the last 5-6 days, no one seems to know why. did your husband experience anything similar?

Thanks again for your response, I may take you up on your phone conversation at some point...Thanks again.

missymet31

Hi,

I don't recall any high blood pressure...perhaps it's unrelated. Waiting and not knowing is torture. I hope you get the CORRECT diagnosis soon....

How are you feeling?

Good luck,
Cathy

hoping4answers · Regular Joined: 11 Sep 2009 Posts: 20 Location: Canton, GA

I feel nauseated all the time, dizzy, short of breathe, which all of the doctors contribute to my new HBP, but these are not new symptoms, just increased. I also feel clammy and my toes and fingertips are freezing. They say that stress may be the culprit, but it has just spiked so high I thought maybe it was a new symptom. I don't know what to think anymore. It is so frustrating to not have a diagnosis, to not start treatment. I am afraid that as we "wait and see" I am losing time...

I find myself obsessed, looking for answers and ways to help my 10 specialist put this picture together. Everyone says the same 'this is definitely something" but no one can tell me what. I have 4 lesions as of now, I have another MRI since the first one I took was an open MRI. I am so upset that no one told me there was such a huge difference in quality, i would have never done an open.

Thanks for reading and listening
Liz

missymet31

Did they mention PCNSL? Have you had a biopsy? Something doesn't add up.....I do have a friend who had the lesions and after a long while was diagnosed with MS even though the tests had indicated that it wasn't. She had to go to a Specialist since many Drs. had told her that it wasn't MS.

I know about the obsession you are feeling. I went through the same thing you are going through. Constantly searching and searching for answers.

At one point before diagnosis, they thought that perhaps my husband had a stroke...of course we were extremely happy when they thought that, but it ended up not being the case. The questions and the waiting can drive you crazy...I really feel for you. Although I wasn't the one with the illness, with my history of family illness and all around bad luck, I am always fearful of finding out that there is something seriously wrong with me. (I try to stay away from Doctors for this reason). I have recently began therapy because the burden is just too much....fear is extremely debilitating. In any case, get as much support as you can.

I am happy to listen and write back....anytime.

Cathy

hoping4answers · Regular Joined: 11 Sep 2009 Posts: 20 Location: Canton, GA

Hi Cathy

We are pretty sure about the MS, I have seen 2 differnt neurologist, one of which is an MS specialist. They have said that even though sometimes it is not detected right away, ALL of my tests have come back negative...funny how MS would be so good right now...

Yes, they are actively looking for PCNSL at this moment...I have to new a neuro opthamologist and a neuro-surgeon. I know what you mean about family history and staying away from doctors. Both of my parents died at 37 and they both had very rare cancers...as if I dont have enough to worry about!

missymet31

Liz,

Please let me know how it goes tomorrow and then again the next day. I'll be thinking about you and sending good vibes....

Cathy

hoping4answers · Regular Joined: 11 Sep 2009 Posts: 20 Location: Canton, GA

Thanks! Sorry for hijacking your post Shocked

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

Hi Missy.

Sorry about the PM...I sent it before I re-read the post and realized your original post was actually back in May of 2007. I'm so happy to hear that your husband has been battling this so well! Treatment of lymphoma has come an awful long way, though there's still so far to go...

Thanks for updating us, and I wish for many more cancer free years for you all!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

hoping4answers · Regular Joined: 11 Sep 2009 Posts: 20 Location: Canton, GA

Hi Cathy

I hope your husband is feeling well.

Well, some would think I had good news, unfortunately I know the truth, it just means more waiting. My new MRI showed that the lesions are gone. I had a consult with the neurosurgeon yesterday, as we were going to plan on doing the biospy (finally get some answers), then POOF! there is nothing to biopsy. Surgeon said it was probably the steroids that sent them into remission, so we have to keep checking for them to return...who knows how long that could be.

I am also having surgery next friday to remove my tonsils, as they have still not gone back to normal, and to biospy the lymph node, since it too is still enlarged. Hoping to find some answers there...

Talk to you soon.

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

Hi Liz,

Well, in the grand scheme of things, we're all just waiting to die eventually. All we can hope for is to make the wait be as long as possible. In your case, you seem to have made your wait longer, so congratulations all the same!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

aisha1

Hi,

Sorry to but in! I have been reading your posts.

If you have been taking steroids, be sure that you should still be taking them if you are to have a biopsy. They stopped me taking my steroids because they said that it messes with the results. Just check with them as soon as you can, so that you can stop days in advance.

Hope you are ok.

Aisha.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

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