Non Hodgkin's Lymphoma Friends
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Worried

I've had a lump on my left collar bone for almost a yr. I just noticed 3 small lumps on my ribs , one the size of a soft ball on my arm inside the bend of my arm. I've been on antibiotics for 17 days, and have to go for 3 CT scans Thurs., I also have a white blood cell count of 19,000 they think I have non Hodgkin's lymphoma. I'm very worried, does any of this sound familiar? Thanks

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Hi Gailbarnes, my follicular lymphoma started with a small lump in my neck. I was diagnosed after surgery and biopsy. I'm still on watch and wait three years later and have had several new lumps or enlarged lymph nodes appear since then but so far they have remained very small.

Good luck with your scans - at least you'll have clarity.

Remember that even if you are diagnosed with NHL, it can be a long term illness in many cases, so if you can keep as calm as possible and don't panic. It is an anxious time but all you can do right now is eat the best food you can and take whatever exercise you can that is appropriate for you.

The more healthy you become, the better you will cope with whatever the next step will be. Please let us know how you get on with the scans and good luck!

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Thank you, so much for your reply. I just lost my mom and my son, and have custody of my three grandchildren, and I'm disabled. My stress level is so high, I've taken care of five family members with cancer til their last breath and the word cancer just scares me to death. I pray GOD heals you, it's nice to talk to someone who is aware of this, this is one cancer, I know nothing about. Thank you, so much SharOn.

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Oh my goodness, you need to take care of you, all that caregiving you've been giving is extremely stressful, and the stress of losing your mom and son is overwhelming . You need some time for yourself, I hope someone can help you achieve that. It's scary with any cancer, the first thing I was told when I was diagnosed was it was a good cancer to have. I'm going on three years of watch and wait after having my spleen out. I feel blessed. I try to exercise and especially eat a low sugar and carb diet with lots of vegetables and protein. Sleep and low stress are very important. Our thoughts are with you for a good outcome. This is a great site for info. Good luck

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Hi! I actually was diagnosed with fallopian tube carcinoma in 2014 and in 2016 while at CTCA for a 2nd opinion of further treating this cancer, I was diagnosed with Non Hodgkins Lymphoma after a lymph node in the right armpit was giving me pain..I recently had another CT scan that showed more neck involvement that they think is the follicular NHL spreading and some lymph nodes in the gastrointestinal tract as well..I am not stressed at this time as all the cancer I do have in both diagnoses, is all too small to treat..the legal size is 1 cm for active treatment. I had my last dose of Avastin (for the stage 4 fallopian tube carcinoma) on March 30th and even though there are 2 kinds of cancer growing, it's all too small. The stage 4 was t almost 4 cm when I began treating a year ago and the NHL was almost 2 cm..after 10 rounds of Carboplatin/Taxotere, 3 of Taxotere/Cisplatin, and 6 rounds of Avastin, I am enjoying a break!

The exercise factor is important..I recently discovered I love Zumba! Now, just the beginning stages of it is where I'm at but I also do walking videos with Leslie Sansone on YouTube and love it! I don't even have to leave home! Do what feels right for you..you'll know..listen to your body and try to reduce your anxiety..it's hard, I know..we all have the 'scanxiety'... but you'll have a plan after the scans and can go from there.. Update when you can!

blessings,

Lynne

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Thank you, for your reply. Sounds like you've been through the ringer. My sister, brother, papaw, mammaw, step dad, 5 aunt's, 3 uncle's all died from cancer. I took care of 4-5 of them until their last breath. None of them however had NHS. Y'all are in my prayers

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Thank you, so much. I'm happy your getting a break. Non of my lymph nodes hurt, except the arm bend ones because of pressing on nerves, the ones in my neck just have a lot of pressure on my throat. I had a biopsy on different nodes 13yr ago, they said the biopsy said they didn't know what it is lol I think they lost it, my Dr says that makes no sense. I didn't go back, so now here I am. The stress is so hard, I can't keep losing my 27yr old son off my mind. It's hell, now this. It helps that you know about this. Prayers and hugs for you.

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I am so sorry for the loss of your son ((HUGS))..praying for you..one hour at a time..take it just one hour at a time if need be. Much love to you, Lynne

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Thank you, Lynne. It's so nice to have friends that truly know how you feel. I've been truly humbled by all your experience, I've always said anyone who has committed any crime on the elderly, children or disabled should have to take care of someone they love 24/7 that's terminal supervised. It would make them a different person. Hugs & love right back to you. I'm praying for all of you.

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It's truly humbling reading what you both have been through. Stay strong.

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Gail, I hope you have some updates for us and they are good...

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I went and got my three CT scans, their also checking me for lupis. I won't know the results til Tues. None of the lymp nodes hurt, not in my collar bone, neck, arms, but pressure. The ones on my ribs are sore, but only because​ I have to lay on my side because of my back. They have only gotten bigger, it's hard to bend my rt arm, because the one at the bend of my arm is big. My white blood cell CT. Was 19,000 I've been trying to eat better like ya'll said. I've been on antibiotics for 17 days, I just wish they'd tell me something, it's driving me crazy. Have any of you ever had a dry face rash, that itches with non Hodgkin's lymphoma? Thank you so much for your kind help. I'm praying for all of us.

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You really do have a lot of responsibility and I am sorry for your losses. I have NHFL and have been on W&W for two years. I retired from my stressful job, eat plant based green vegetable and stopped eating red meat. I take Turmeric and sleep late when I'm up frequently during the night. I just started an exercise program. I was told by both my oncologist and primary care physician if you have a cancer diagnosis this is the best to have...more of a little c rather than a big C. Research has advanced as well.

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Thank you,jmcobb50. It's nice to be able to talk to people who are going through NHS, the Dr says he's 75% sure I have NHS, of course GOD can change this for all of us. You are in my prayers my friend

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No rashes for me. Just swelling of lympnodes in neck, and collar bone area. Please, please keep us updated and wishing you well....I was diagnosed with Mantel Cel NHL.... in remission now...

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