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Primary Mediastinal Large B Cell Lymphoma

GJS's picture
GJS
Posts: 5
Joined: Oct 2012

I was diagnosed in July of 2012 with Primary mediastinal large b cell lymphoma. I am 46yrs old and female otherwise very healthy. I am being treated with DA R-Epoch and I'm wondering who else might be out there dealing with the same diagnosis and or is a survivor of this sub-type of large b-cell. I would love to connect with others that have had or have same type of lymphoma. GJS

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi GJS and welcome. You'll find wonderfully supportive folks here.

I had Diffuse Large B Cell Lymphoma and completed R-EPOCH October
of last year and am in complete remission. In less than a month, I
have my next scan and will hopefully officially celebrate my first
year in remission! Know there's plenty of hope and lymphoma in general
is very treatable and in some cases, curable.

It would help if you could fill out the "about me" section so others
can easily reference your details by clicking on your name/picture.
There are many people here with similar experiences who can offer
support and encouragment. You are not alone!

Others will be chiming in soon - I just wanted to give you a warm welcome
and big hugs.

Jim

GJS's picture
GJS
Posts: 5
Joined: Oct 2012

I updated my profile as per your suggestion-I'm new to all this!Wow one year anniversary coming up!!! I WILL pray for a clean scan for you. I also try to maintain a sense of humor through all this and I'm tolerating the treatment fairly well. Fatigue really hit me after this 4th cycle and I'm anxious about my PET scan next week.I also travel out of state for treatment and hate being away from my family and friends for almost a week. I'm assuming you didn't have or need radiation? I will most likely need radiation as well even if my tumor is gone. Drs. don't want it to come back. Um, neither do I but I am concerned about effects of radiation long term. Not sure yet what will transpire and much will be determined I suppose after this next scan.Glad there is support out here as locally I don't have much support from anyone that has dealt with Lymphoma.Sending lots of hugs your way too- we lymphoma folks are unique:-)Gloria

GJS's picture
GJS
Posts: 5
Joined: Oct 2012

I updated my profile as per your suggestion-I'm new to all this!Wow one year anniversary coming up!!! I WILL pray for a clean scan for you. I also try to maintain a sense of humor through all this and I'm tolerating the treatment fairly well. Fatigue really hit me after this 4th cycle and I'm anxious about my PET scan next week.I also travel out of state for treatment and hate being away from my family and friends for almost a week. I'm assuming you didn't have or need radiation? I will most likely need radiation as well even if my tumor is gone. Drs. don't want it to come back. Um, neither do I but I am concerned about effects of radiation long term. Not sure yet what will transpire and much will be determined I suppose after this next scan.Glad there is support out here as locally I don't have much support from anyone that has dealt with Lymphoma.Sending lots of hugs your way too- we lymphoma folks are unique:-)Gloria

loriwestbee's picture
loriwestbee
Posts: 2
Joined: Nov 2012

Hi there Gloria and Jim!

I just joined the network and saw this thread. Just wanted to share that I was diagnosed with primary mediastinal large B cell lymphoma last December and had 6 rounds of DA R-EPOCH as well. I also had radiation treatments after chemo ended, which put me in remission. I will be praying for you Gloria throughout your treatment. Please feel free to ask any questions! I am thinking you are about finished now with chemo according to the timeline of your posts?

Jim, that is awesome news about your clean scans! I hope that mine will be clean in the future too! Any advice on reducing anxiety about future scans? I think I'm currently going through the anxious "what-if phase" now that I'm done with treatment. I hear that's normal. :)

Thanks!
Lori

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Lori,

Sorry for the late response. I had guests in for Thanksgiving week
and am playing catch up ☺.

"Scanxiety" as someone coined it is very normal. I go throught it
a day or two before my scans and especially the day of the procedure.
I'm very fortunate in that I get my results the same day. Many here
have to wait a week or two for results. I think that would make it
harder - waiting on the results. This is supposed to get better over time
but so far for me, it has improved a little ;). I still have ativan and
take it on rare occasions just to take the edge off. Normally I don't need
it.

Diffuse Large Cell is very treatable and even curable so I try to focus on
that. I've got 1 year under my belt, 4 more to go to "cured" :). We are all
human and a certain amount of anxiety is normal. It's okay to be human :).
I found this website that has some ideas regarding anxiety:

Scan and Test Anxiety: A Guide for the Newcomer

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

loriwestbee's picture
loriwestbee
Posts: 2
Joined: Nov 2012

Thank you for the advice Jim! I really like the link you posted too- I've bookmarked it for the days I'm feeling more anxious than normal. I've been seeing a psychologist weekly which seems to help. Also started taking Xanax, which I think takes the edge off quite a bit.

Thank you again. Congrats on your one year!

Hugs,
Lori

nkay26's picture
nkay26
Posts: 2
Joined: May 2013

Hi Lori, 

I'm new here. Also with pmbcl,  currently done with the 4 th cycle... Waiting for the 5th. Got a PET scan today. Really nervous about the results. Did you get PET scans too? If you don't mind me asking, how did you find it you had lymphoma? 

 

-Naomi 

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Hi, Gloria...

I was healthy in my mid 40's when diagnosed with large diffuse B-cell lymphoma in July 2012. The tumor originated in the mesentery, a cavity adjacent to the abdomen and small intestines. As a male I am more prone to lymphoma, all other demographics being equal.

I have been undergoing R-EPOCH since August 2012, including intrathecal treatment--chemo injected into my CNS through an Ommaya Reservoir (port with catheter implanted in my head). It doesn't make me a Borg (Star Trek Next Generation reference ).

Glad you maintain a sense of humor; it helps to lighten the load with some levity. ;-) I've had my share of bad days along with moments of laughter and smiles.

My NHL was classified as 'aggressive'; the tumor was growing twice in area every two weeks. I plotted the measurements after each CT & PET Scan and calculated the growth. I'm a bit of a math guy, but I digress... Point is I did my own comparisons and didn't rely solely on the report from the radiologist or the assessment from the oncologist.

I had a CT Scan after cycle 3: it showed a significant decrease in the size of the tumor. I'm starting cycle 6 in the first week of December. I'll have a PET Scan after cycle 6. Hope the results from your PET Scan were promising.

I have noticed increased fatigue after each round of treatment; not enough to dissuade me from my daily routine. I do about 20 - 25 minutes of exercises a day, in between treatment. I skip a day now and then when I'm not feeling well. I walk a mile or so when I'm up for it and the weather is nice.

Be proud of yourself for making it this far through the treatment. We didn't sign up for this, but we're warriors for dealing with it head on. Be sure to express your concerns and ask questions regarding long term aggregate effects of chemo and radiation.

An informed decision is the best decision you can make. My very best to you!

JP

DadysGirl
Posts: 322
Joined: Aug 2011

Jim why do some pp get r epoch vs rchop?

Malka28
Posts: 2
Joined: May 2013

Hello, I'm a 28 year old female, and just finished 6 cycles of R-EPOCH for my PMBCL which was diagnosed in November 2012. 

I am in complete remission. It has been about one month since the good news. Everyone around me is happy and proud of how "strong" I am.

Yet psychologically I'm still feeling very down/dysthymic and I honestly don't feel particularly happy or celebratory at all.

Has oneone else experienced a similar pattern when they completed treatment? 

 

By the way...if anyone is interested, the New England Journal of Medicine recently put out an article on PMBCL treatment with EPOCH and according to the study the survival rate was great. The article was called - Dose Adjusted EPOCH-Rituximab Therapy in Primary Mediastinal B Cell Lymphoma 

sjp20
Posts: 1
Joined: May 2013

Hi, first of all, thank you so much everyone I have just found this site and already have so much more hope.  

 

I'm sorry if I shouldn't be on here as it not about me, but my 30 year old friend has just been diagnosed with the above and we are all researching to see what we can find out for her.  We are looking for any advice and guidance we can get.  We are in the UK.  Her treatment starts 3 June and is Dose Adjusted EPOCH-R.  

Symptoms were nightsweats itching, tired, weight loss.

Primary Tumor in chest, secondary on neck, will be having bone marrow tests etc.

The hospital have already messed her about, she went in had a pre-med to insert a tube in preperation to feed chemo straight into the agressive tumour and was told at the last minute it couldn't be done, because they hadn't done the bone marrow tests, so her faith in docs already a bit shaky. 

Thanks if you can share your stories, advice, guidance and we will do the same in return. 

Sara

 

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