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Gina 1009's picture
Gina 1009
Posts: 13
Joined: Aug 2012

Hello:

I am new here. I live in Southern California. I was diagnosed in May with Non-Hodgkins Lymphoma Diffuse Large B Cell. I had pain in my lower spine and hip area and that alerted me to find someone to diagnose what it was. It was a surprise because I was being diagnosed with arthritis, sciatica, and a host of other ailments until an orthopedist took an MRI and found the area on my spine was affected. I just had my third treatment of RCHOP and am due for my fourth treatment week after next. I had a PET scan this last week but have not received the results yet.

I am glad to have found a forum where others would understand how this feels to be diagnosed, treated, and live with something both physically and mentally. I have really good days and then my energy is completely gone on others. The first two treatments were not that bad but the third one was the worst yet. I have a wonderful husband, daughter and son who support me and I am greatful for that.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Gina,
Welcome to this site. You will find a lot of caring people here. I also have NHL,but not Large B cell. Mine is Follicular. There are a few people on here that do have the Large B cell and they will chime in shortly. I went thru R-CVP and about the 4th one it felt like a bus had run over me. It only went downhill for me thru the 6th one. It may be different for you. I hope so. We are all different in the way we react to the chemo. R-CHOP is from what I understand a little more harsh. You will make it thru fine even though it seems like you won't. I will let the others tell you about their experiences. Anyway welcome and keep coming back when ever you feel up to it. John

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hi Gina and welcome to the room full of elephants (I read your
"about me");). Sorry you have to be here but as John said, you'll
find wonderfully supportive folks here.

I was diagnosed with Diffuse Large B Cell April 2011 and had 6 cycles of
R-EPOCH which is essentially RCHOP with the "E". I completed treatment
October 10, 2011 and am nearing my one year mark of remission (so far
so good). I'm very thankful for this site and the folks here. You can
read more about my journey in the "about me" section (just click on my
name or picture).

People do react to treatment differently but certain things are pretty
consistent/common like fatigue, hair loss, and prednisone roller coaster.
I'm sure I don't have to tell you about those right now ;). You are going
to have your bad days but you will get through it. I'm assuming you
are past or near your half way point in treatment (RCHOP is usually 6-8 cycles
I think) so do something nice for yourself to celebrate if you haven't
already!

You're welcome here anytime to share and ask questions or offer support yourself.
Sending postive thoughts and energy that you get great news on your scan.

Hugs,

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

Gina 1009's picture
Gina 1009
Posts: 13
Joined: Aug 2012

Thank you so much to ALL of you for the warm welcome and really good and heartfelt advice from everyone. I do appreciate it very much.

jimwins-I like what you said about "elephants" and you did read my the "About Me" section. I am so glad you are in remission and to read these stories gives me positive feedback.

Thanks again for all your wonderful replies. It helps to know that one is not totally alone in this and yet I hope you all know that I wish there were another reason for us all to have a like minded situation.

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

This is a great community of supporters, who can relate to what you are going through!!

I have Follicular, Indolent NHL; diagnosis 8/2011--had Bendamustine/Rituxan treatment x 6 cycles; now on Rituxan maintenance for 2 yrs. Very fortunate and blessed that I only had side effect of fatigue. Each person's responses can be somewhat different and the treatments for the various NHL's can be different---

That said--lots of support, information, love, prayers, and a place to share your heart!!

So share away and receive the many blessings, laughter, love, etc, etc, etc---elephants are here too!!

Warmest regards and prayers go with you!!

Suasn

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Gina

I want to add my welcome to the group. You have found a truly wonderful group of caring people.

Good days, bad days and everything in between days, you will always find someone here for you.

Glad you found us.

Hugs
Lisha

PS I am in the SF bay area, it's nice to have another west coast member.

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Gina,
Welcome to the group, my dx is Splenic Marginal Zone NHL, Stage 4 with tumors in spleen, liver and bone marrow involvement. I was diagnosed last year in July and so far I have done two rounds of Rituxan treatment. My treatments are done once a week for four weeks every six months, I just finished with my second round, in a month or so will have more tests and a bone marrow biopsy to see if it got it all this time. I also have lower back pain, had MRI and Ct scan a few months ago which showed a large bone island and some herniated disk which are the cause of my pain. Hope you can get rid of your back pain soon because it can really be a debilitating condition. I'm also married with three kids, (18 - 14 - 4 yrs old), I used to live in San Diego, 5 yrs ago we moved to Texas.
I hope that you reach remission soon and you can put this tough experience behind you. Take care and sending you positive thoughts.

Sincerely,
Liz

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Gina,

Welcome to this sight! You will find great people here that can share and support you. Sorry you have to be part of this group- but glad you found us!

I was Dx in 2010 with Nodal Marginal Zone NHL Stage IV. Had Rituxan in 2010. Currently I am in the middle of Bendamustine w/ Ofatumumab treatment. Heading toward Remission!!

I get the bad days with the good days. This experience is for sure a Roller Coaster! I'm on prednisone right now in preparation for the next two days when I get my infusions. So... I'm pretty sure my house will sparkle from getting cleaned and I'll be talking a lot. hehe My poor husband. He is so supportive, along with my daughter. We are blessed to have that support!

With any of the tx that I have had there are days when I have little energy, no appetite etc. But he good days always come too. :) I am praying that your PET comes out clean!

Keep us posted,
Hugs,
Donna

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi!, welcome, it's awesome that you have a great support group.... Your half way there! Vinny

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Gina,
I too wish we all could meet under different circumstances, but alas...it is, what it is. I have Follicular NHL-grade2-typeA-stage3-Dx in June 2010-age 61. We have a variety of Lymphoma sub-types here, but the one thing we all share thats exactly alike is the need to know we are not alone and have a comforting group to talk with. This is the place for that, so I hope you will come back and keep us up-dated through out your cancer journey.
Best wishes...Sue (west coast also...Yakima, Washington.

nikkig43
Posts: 73
Joined: Feb 2012

My husband was diagnosed with Large B Cell Non Hodgkins Lymphoma - Left Tonsil and a few surrounding lymph nodes, in January of this year. He finished 3 rounds of R-CHOP and 20 radiation treatments on May 31st. We are very happy that he is now in " complete remission"!! Luckily, this type of cancer responds very well to treatment. His doctor could see that his tonsil looked completely normal after just one R-CHOP treatment. His feeling,at that time, was that he was probably already in remission.
You are going to be just fine too. I'm sending positive thoughts and energy your way.
Take care, Nikki

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Gina,

Welcome to the room. I will echo what others have said........you will find a lot of wonderful and caring individuals in the room. We are here for you. I too am a NHL Diffused Large B Cell survivor. I was staged 4B. In 2 days, that will have been 5 years ago. Yes, that RCHOP is no joke that's for sure. I've had it and have conquered it. You will too. We understand the energy level and the good and bad days. Just take it one day at a time. Rest when you need to rest.

I am so happy you have a loving and supportive family. You are really blessed. I'm glad you found the room. The chat room is also another part of the site that can may be helpful. Take care and keep us updated.

Be blessed.
win.

Gina 1009's picture
Gina 1009
Posts: 13
Joined: Aug 2012

Hello everyone.

Yesterday I had my fourth treatment of RCHOP. So far o.k. but I know I have those three weeks to find out what side effects there can be. It actually is the five days of Prendisone afterward that have been the most difficult the last three times.

I received the results of my PET scan. The doctor was very pleased with the results. This scan is in comparison to my first PET scan. I was to receive 8 treatments but he is putting them at 6 instead and then I will get another PET scan.
Marked improvement of disease with markedly decreased size and hypermetabolic activity of lymphadenopathy.

Thank you all for your support. I feel free to convey my scan and get feedback from people that know where I am coming from. I appreciate it very much.

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