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ExGI
Posts: 9
Joined: Feb 2009

Hi all! My name if Jeff , I am new here today. I am 46 years old and live in Montana. I don't have a final prognosis or final stage yet but my oncologist has told me so far it's likely to be Diffuse Large B-Cell Lymphoma and it is all over the place, Thymus, Stomach, pancreas, Kidneys, Colon and more, but he said it is treatable. It has spread very rapidly in a short period of time 4-5 weeks. My prelimanary Biopsy was done on my thymus where a grapefruit size tumor has grown and they also took a node that was next to it. The local Pathologist said it was 99% to be Lymphoma but had to send it off to Mayo clinic to get a final. So far I have in the last two weeks received two CT scans, A biopsy of my thymus, a Bone marrow biopsy, and was also given prednisone 60 mg daily, morphine 15mg every 4 hours amongst a few others drugs. Tomorrow I have a PET scan, Tuesday a Port installed and Wed. Chemo therapy R-CHOP. This has all happened so fast and I have been in so much pain I haven't really had time to think about. I am hoping that the Final pathogy shows up before Wed but if not the onc says we have to go anyways because of the above reasons. I have a tendency to agree, I did call Fred Hutchinson in Seattle for a second opinion but that could be 10 days out and I may not have that much time. I haven't had time to read any of your stories or many posts yet but will as soon as I can. Best wished to you all and hopefully I will be chatting with you soon.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am glad you found this site as you start your journey with cancer, you will find many supportive survivors here to help you. I myself am a 20 years survivor of NHL. I had an autologus bone marrow transplant for it 18 years ago after CHOP treatment on diagnosis 2 years before. Transplants are no doubt different today than they were way back 18 years ago but even at that I am here to tell you that NHL can be cured, I am a living example. The road through chemo and radiation can be rough but they consider mine a cure and I just wanted to tell you that. Keep the faith, think as positively as you can throughout, set a goal for your future and if you find yourself troubled or just wanting to share you can come to this site. Often people who love you are there for support and that's fabulous but no one like another survivor knows exactly how you feel and that is where this site comes in. All the best in your treatments. Blessings, Blueroses.

ExGI
Posts: 9
Joined: Feb 2009

I m getting ready to go to get mu PET sac , Thanks for your encouging woods

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

All the best of luck on your PET scan. Praying works. Blessings, Blueroses

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

First, welcome Jeff

I am a 43 year old Non-Hodgkins Lymphoma survivor. I can truely understand that from the moment the dr says it may be Lymphoma, your head seems to turn so quickly. Its kind of hard to keep up, and digest the words all at the same time. At least that's the way I felt.

I too had the lymphoma in the upper and lower parts of my body. I had spots on my liver and spleen, and bone. I was tired and felt like I was in a fog in the beginning. Once I was placed on R-CHOP/CHOP-R I began to do a whole lot better. There are wonderful results from that chemo treatment and I am glad they are starting you off on it. I did well and you will too.

I have to agree with Blueroses, prayer definitely works. Pray and have others to pray for you. It is what's gonna get you through it all.

Please join us in the chatroom. It is available around the clock. There are a lot of loving people in both the chat room and this discussion boards. We are here to support, love, and help each other. We are here for you.

Take care and be blessed.

Win

ExGI
Posts: 9
Joined: Feb 2009

Thanks for the words of encouragement and it os nice to see that there are survivors out there. I will deffinitly be on chat tomorrow night. PET scan wasn't as bad I thought as far a the procedure, my oncologist will give his interpretation on Wednesday Morning before CHEMO.

Take care everyone and thanks for taking the time to reply

noreaster
Posts: 4
Joined: Dec 2007

Hi, Just wanted to let you know I've been there too. My case is slightly different than most. I was diagnosed with what ended up being Small Lymphocytic Lymphoma back in 2000 but had no symptoms so it was just watch and wait. Finally in the fall of 2006 I started having symptoms and my SLL had also become the more aggressive Diffuse Large B Cell Lymphoma. Starting in January 2007 I went through R-CHOP and by the end of the 6th round was in remission. It was also recommended that I have an Autologus Stem Cell Transplant so in August I went to Dartmouth Medical Center in New Hampshire for the transplant. Everything went well and I was back to work by the beginning of December of that same year. So far everything is going well. I still have my SLL since there is no cure for that but my more aggressive lymphoma is in remission.

They can do some pretty great things now days. Hopefully you have someone close to you that can be there for you to help you along the way. I went almost all the tests you mentioned and it's been quite the adventure. But there are some very good and pretty amazing people you'll meet along the way. Hang in there and keep plugging away, give yourself a break when you need one but keep on living your life as best as you can. You'll do all right.

noreaster

Tyggs
Posts: 4
Joined: Jul 2006

Welcome! We know what you are going through... I am on my 3rd recurrence in 11 years of Small B-Cell MALT (gastric) NHL. I have just finished 8 rounds of Rituxin; I have an endoscopy on Thursday. Best wishes to you and hope you will be feeling better soon. Keep a positive outlook!

Tyggs

ExGI
Posts: 9
Joined: Feb 2009

Took two days had a little sensivetivity to the rituxin so had to go back for that. If it wasn't for my stomach swelling I think I would be doing allot better. Will try to check in a few days. Hope all goes well with you Tyggs, noreaster, win, and blueroses.

Pnktopaz10
Posts: 56
Joined: Oct 2008

Hi Jeff~ I too have Large B Cell lymphoma and went through R-Chop and 25 sessions of radiation. I now am in remission and will get a PET scan in March. Prayers do work wonders~especially when you are dealing with all of the cancer, side effects,anguish etc. This board is also a wonderful way to talk with people who have been there. I am still dealing with the side effects but I can tell you it is worth it!
As long as you are confident in your doctors and ask a lot of questions (there is no silly questions when it comes to cancer) you will feel more in control. Please keep us posted on how you are doing. There are a lot of people on this board who will be praying for you.
Take care, Pnktopaz

ExGI
Posts: 9
Joined: Feb 2009

Well turns out when we got the final pathology report from Mayo clinic the cancer turned out to be Burkitts Lymphoma. I am now on a very agressive form of treatment called the magrath protocol. I'm halfway through round 2 of 4. Wishing you and I the best, this is not easy.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Now you have the final diagnosis and know what you are dealing with you can put all your energies into fighting it instead of energy spent on wondering what it is. I know it isn't easy on any level but one step at a time and talk out any feelings you have with your loved ones or on this board - people really understand here - no matter how small you think your feelings are - they are all valid. Good luck with the treatments and keep us posted. You are in my prayers. Blueroses.

mawyers
Posts: 1
Joined: Jun 2009

I am curious as to how you are now. I am responding to your February post. As I think back to February, I was probably just starting round 2 myself. I finished my final round in May but continue to go in every three weeks for further treatments. I have not had any follow-up tests so I worry that a cell or two didn't get the chemo and are multiplying as we speak. I wouldn't have even known I had lymphoma had my appendix not burst so I don't trust that I would even know if I had it again. I don't suppose that's a good way to think.

I hope all is well with you. When you said "this is not easy" you weren't joking.

Hestia
Posts: 26
Joined: Jun 2009

I also would like to know how exGI is doing. I found out I had NHL when my right arm broke without reason. Doctors don't like spontaneous (sp??) breaks, many tests showed NHL, did radiation first cause of broken arm (with shoulder involvement) and then chemo. Now in remission as of this past April (09); another PET scheduled for early August.

No matter what, I need contact with others going thru all this, the waiting game, the struggle to keep the faith going and the hope that has to stay active for me.
I hope all is well, exGI, and that you will make some contact.
take care,
Hestia

judyy
Posts: 19
Joined: Jun 2009

I too have been thinking of exGI and hoping the best for him and his journey. The beginning is just full of bumps and mountains.

I hope things are good for you at this point and will continue to be better. Let us know when you can
Our thoughts and prayers for you
Blessings
Judy

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