Primary Mediastinal Large B Cell Lymphoma

Welcome
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 said:

Thank You for the warm welcome!
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

You're not alone...
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

jimwins said:

Hi Lori
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.

Thanks Jim!
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

jimwins said:

Welcome
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

Jim why do some pp get r

Jim why do some pp get r epoch vs rchop?

Mediastinal Large B Cell Lymphoma stage 2B

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