Recently Diagnosed and looking for support

I was diagnosed by my ENT on April 23 with DLBCL after treatment for what we thought was left over tonsil tissue. ENT removed it and sent it to pathology. It came back positive for DLBCL. I had the port put in on May2 and the CT/PET scans on May 3. I have not met with the Dr yet about the stage, so I am anxious about that. The Dr. wants to go ahead nad start treatment tomorrow (May 7). I am nervous about what to expect and how I will react. Trying to manage the emotions and the physical issues. Mostly, I am super tired, night sweats and nausea. Wish you all well in your battle. Thanks for reading.

Update: chemo delayed until tomorrow so I can get an EKG. I did get to talk to the dr. Thankfully the lymphoma is only "stage 1 almost 2" . It is localized to my left neck lymphnode and tonsil/throat area. So, 3 rounds of RCHOP and some radiation. I am thankful for my ENT who did not waste any time. Still a little anxious about the chemo but relieved to get this information

Bill, Nathan threw a punch at your cancer.
Jill sent you a prayer.
Jessica, Olga sent you a hug.
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Hi Melissa, Sorry to hear about your diagnosis. It was my diagnosis as well. Let's see what they say about the stage of your NHL. This is perhaps the toughest time for you because you have so much unknown and so many questions. Before I make any comments, I'd sure like to hear what your treatment plan is. I suspect they'll use R-CHOP chemo, but let's wait and see. DLBCL is very treatable and success rates are high.
Right now, your job is to learn, learn, learn. You'll fall in love with the people providing your care and treatment. Ask questions! I always say, if you walk out of any treatment or care encounter with questions, that's your fault. The best way to begin to feel you are getting control of your life back is knowledge.
Nothing you are going to go through will be as bad as your imagination is telling you it will be. And being a bit stunned and afraid is TOTALLY okay. It is normal.
Breathe, learn, relax. Let's see what your treatment plan is and we'll go from there. Best wishes, stay in touch, and smile and stay positive. You'll get through this! Bill
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I am starting RCHOP tomorrow as long as my EKG is ok. The not knowing is very scary. My family, friends and church have been amazing. I am trying to stay strong and prepare for the fight. We have made a slogan. #HULK SMASH. We are ready to smash this Lymphoma. We are Avengers fans, so that is where the slogan comes in. I have begun journaling, gotten back in touch with my therapist, and joined on-line support groups. Everyone has been so supportive. I am trying to stay away from Googling and only trusting info from my Dr and the caner societies. I hope to be able to work during most of the time. A great deal of my work is computer based and can be done at home once my immune system drops. Thank you fo ryour encouragement.
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Okay! R-CHOP. R-CHOP is extremely effective against DLBCL. You have every reason to be positive about the outcome. Everybody responds differently to chemo. I think you'll find it to be less overwhelming than you might believe. Any news on stage or number of infusions?
You'll know you're being infused with some powerful drugs, but the side effects may be okay. Remember this, absolutely any side effect is not unique. You will find someone on one of your blogs who will have had that one and can help you with it. Communicate with others who have been where you are about to go. The experience out there is amazing, all you have to do is ask.
Also, do not hesitate to discuss any side effects with your oncologist. A lot of things can be changed or adjusted without disturbing the effectiveness of the treatment. So speak up!
The thing that I am certain will help you the most is to have a totally positive attitude. Keep smiling. Cancer cells hate smiling. As many cancer cells will be killed by you smiling as will be killed by R-CHOP.
Stay in touch. You're not going to enjoy treatment, but you will kick cancer's ass.
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I totally understand. My diagnosis was this past March, and it was a shock. I’m now half way through chemo treatments. Fatigue waxes and wanes, but I find trying to stay active helps with reducing depression and anxiety and nausea. Research shows that walking 1-3 miles per week can help prevent recurrence of cancer, and walking 4-5 miles per week is even better. Of course allow yourself breaks too! I never asked what stage my DLBCL is. It was found in my neck and a large tumor wrapping around my aorta. A recent scan showed the tumor already shrunk 2/3 of the way down. I’m on the R-chop chemo regimen. It is amazing how well it works. Losing my hair was the most traumatic part. And I’m not really into my looks. That happened about 20 days after the first chemo cycle. I recommend cutting your hair if you are expected to lose it. Having it fall out in the shower and on your pillow at night is traumatic.
Communicate with your doctor, find your answers, and I’m here for you if you need anything. Knowing we’re not alone is powerful. Prayers for a fast recovery!
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Prayers for a fast recovery for you too. Thank you for your support.
Melissa, welcome to this group. We are fighting another kind of cancer in our house but the emotions are much the same. I do recall seeing very good outcomes with this kind of cancer so you have many many reasons to feel you will beat this. This path ill get easier as you learn your plan and path. Soak up the experience and caring posts from this group. It has been a lifesaver for me. I am caring for my husband with pancreatic cancer. Hugs, prayers and positive energy coming your way.
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Update: chemo delayed until tomorrow so I can get an EKG.
I did get to talk to the dr. Thankfully the lymphoma is only "stage 1 almost 2" . It is localized to my left neck lymphnode and tonsil/throat area. So, 3 rounds of RCHOP and some radiation. I am thankful for my ENT who did not waste any time. Still a little anxious about the chemo but relieved to get this information
They want to do the heart tests to assure there are no issues with it prior to beginning the chemo. I was stage 3b, had eight rounds of Rchop, no radiation. NED now for almost 10 years. In my experience the first two or three days after the infusion I felt okay, the next 10 days or so nausea, fatigue and generally not feeling good. The week or so before the next infusion felt pretty good. The effects were cumulative, after each session it was a bit worse. Fortunately I have a very sedentary job was able to work all during treatment. I agree with a previous writer to have your hair removed all at once, it was less traumatic than the constant shedding. I never lost all of my body hair, but it thinned considerably. Keep looking for the end, each session you have is one less to go! Good luck and keep smiling!
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Stage 1 is great. But the understanding of, and treatment for NHL has gotten so good that even Stage 4's are having successful remissions. Rituxan has made a big difference in outcomes also. Blessings are your treatment.
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It is a start of a journey.
Just don’t read too much on the internet!
Also, a few good sites on Facebook, too.
Good luck!!
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Vital Info

Posts

May 6, 2019

Joelton, Tennessee

Cancer Info

Non-Hodgkin Lymphoma

Diffue Large B-Cell Lymphoma

April 22

Yes

Sarah Cannon Center for Blood Cancers

Night Sweats, swollen lymph node on neck,extreme fatique

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