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Mediastinal grey zone lymphoma (MGZL)

kolasås
Posts: 3
Joined: May 2013

Hi there

I was recently diagnosed with this rare lymphoma. Since there isn´t much information about greyzone lymphomas on the web, I figured I might aswell try here instead Wink. I´m currenty being treated with DA-EPOCH R 

Has anyone got this? Thanks

 

 

Rocquie's picture
Rocquie
Posts: 674
Joined: Mar 2013

I would say I've never heard of that one but prior to my own lymphoma, I had never heard of any of them. When my doctor said I had lymphoma, I said, "what's that"? That is how under educated I was. Some more information about you and your case would help us. And I sure hope someone here has some insight for you.

Rocquie

 

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi and welcome to our group,

I also have never heard of this type of lymphoma either. My type is Splenic Margina Zone Lymphoma..I hope you do well with your treatment. Hopefully someone else can help you. Take care

Sincerely,

Liz

kolasås
Posts: 3
Joined: May 2013

Ah well, thanks anyways

greyzonelymphoma
Posts: 1
Joined: Jun 2013

I'm on my 4th cycle of epoch.  For stage four greyzone lymphoma Hodgkins and b-cell

kolasås
Posts: 3
Joined: May 2013

Nice to hear from you, there aren't many of us out there.  

 

How's your treatment going? I'm at my 6th cycle (hopefully the last) and doing well!

lredmer
Posts: 1
Joined: Jun 2014

Kolasas,

I hope this message finds you well.  I am a 10 year survivor of IV B Gray-Zone Lymphoma.  I did 8 rounds of EPOCH-R and was one of the original receptients of this chemo.  If you like to talk about some of the side effects I would glad to lend you my ear.  I hope you are well.

legrand2
Posts: 1
Joined: Oct 2014

i am happy to find this.  My niece was diagnosed in March of this year with Mediastinal Grey-Zone.  She went through 6 rounds of chemo and was said to be in remission.  In September of this year she was told it was back.  She went back to the doctor because she started having problems with her legs/feet and couldn't walk.  She had a tumor in her spine as well as previous sites.  She has now been at MD Anderson since the first part of Sept and the latest PET scan and CT scans show all have disappeared except the tumor in her spine, but it appears to be shrinking.  She has now had two rounds of chemo, will have one more round and then start radiation.  They will then start stem cell procedures for possible stem cell transplant.  Thoughts?  And congratulations on 10 years!!!  Celebration!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1819
Joined: May 2012

Ask your niece's doctor about CYBERKNIFE Radiation.  It is a micro-precise radiation delivery system used on hard to reach tumors, especially in the brain and spine (it is a form of radiation, and involves no surgery at all, despite the name). The beam is automatically adjusted, even for breathing or gas movements in the colon.  Her doc will undoubtedly be familiar with it. It would be wonderful if it could kill the tumor, with no SCT necessary.

max

SteffR
Posts: 3
Joined: Aug 2014

Hi, I have never heard the term grey zone but I am a survivor of primary mediastinal lymphoma (diffuse large b cell). Last month was my ten year anniversary from finishing treatment. I had 8 rounds of CHOP+R and a month of radiation treatment, I was 28 at time of diagnosis. My tumour was large and I ended up having three biopsies with an eventual open chest surgery to get diagnosis/remove some of the tumour surgically, though it was near my heart, lungs, blocking superior vena cava, all that fun stuff so surgeon couldn't get at it very well). So anyway it can be beat :-) I was told at the time that this lymphoma makes up 1% of all lymphomas - not sure how accurate that still is. Anyway best of luck with your treatment, I know it's not easy but if I can do it anyone can :). Take care. 

ibecancerfree
Posts: 4
Joined: Jun 2016

I am a cancer survivor myself and just now joined the network because my best friend has grey zone lymphoma. He has done 6 rounds of chemo so far. The first 4 rounds were 5 days of constant chemo every 3 weeks. Then a pet scan showed it was not shrinking large tumors in his chest. Then they did 2 rounds of chemo called ICE and another pet scan shows still not shrinking large tumors in chest. They are doing a 3rd biopsy today. I would like to hear from anyone who has had or knows someone who has had this type of cancer. My friend has been to the MAYO clinic in Minnesota and is now being treated at KU Med. at  K.C. Mo. Any info would be greatly appreciated.  Thank you and keep fighting. 

GrayZoneSurvivor
Posts: 2
Joined: Jul 2016

Hi, I hope this message finds your best friend still fighting and winning the battle.  I am a Gray Zone Lymphoma survivor and have been in remission for 3 years.  When diagnosed, I was already in Stage IVB and was in so much pain I had quit going to work - and I was military if that tells you just how much pain I was in.  I seen by numerous doctors for my pain for four months and no one could diagnose anything, so I was continually given pain meds that kept me out of sorts and did very little to ease my pain.  Seven large tumors had metastasized on my spine causing unbearable pain in my right scapula.  Anyway, once properly diagnosed, my world as a cancer patient started the very next day.  I did 5 days of constant chemo every 3 weeks for what felt like an eternity (i.e. R-Chop, R-ICE, etc.).  Well, after months of that, I finally went into remission.  Much to everyone's surprise, 3 wks into remission I started feeling familiar symptoms (night sweats, excessive itching) and a PET scan show that the cancer had came back with a vengence.  Took 3 more mos of hell to get me back into remission and UNC Chapel Hill Cancer Center opted to do an Autologous Stem Cell Transplant.  My new "birthday" is 27 and 28 March 2013.  I actually saw my oncologist today for my now every 6 month visit and am scheduled for my now annual CT and PET scan this Thurs.  My CBC's today were perfect and I feel great.  Three years ago, well, even two years ago, did I ever think I would be able to say that again, but I'm here and I'm alive, and your friend will be in my prayers.  If there is any info I can provide you or your friend, please feel free to contact me.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1819
Joined: May 2012

Good luck with the SCT, GreyZone.  Your good CBC has to be a good sign.

max

GrayZoneSurvivor
Posts: 2
Joined: Jul 2016

Awww...  Thank you for the encouragement, Max.

 

lindary's picture
lindary
Posts: 329
Joined: Mar 2015

I was diangosed with Follicular non-Hodgkins lymphoma in Dec 2014. I had 6 cycles of R-Chop. It is a 1 day treatment given every 3 weeks. When the scan showed the tumor had shrunk but not enough I ended up having 3 cycles of RICE. (ICE + Rituxan). for me that was 3 days of treatment in the hospital every 3 weeks. I had not heard of Grey Zone before and looked it up. Doing some research online of this form of cancer would help your friend be prepared for discussions with the dr. Whe I do my research I stick to medical site. I did not see any site that indicated there was a group dedicated to this type of cancer. Usually such site can be helpful 

Linda

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