Non Hodgkin's lymphoma

Posted by maisyann @maisyann, Mar 22, 2016

Non Hodgkin’s lymphoma

Would like to find a support group in regards to non hodgkins lymphatic B cell.

Hello, I too have and had NHL(not the national hockey league)./ for me it’s Low grade B cell non-hodgkins lymphoma, diagnosed in 2008 and treated with 6months of chemo, and maintenance doses that followed, and left me in remission until 2014 then soaking night sweats had me back to chemo again, 2009 chemo wasn’t bad at all 2015 wasn’t good at all low blood counts fevers ER visits near neutropenia fever and chills,…blood count back to normal fen.2016 now lighting up like a Christmas tree on last two PET scans…another PET in October, see where treatment take me this time if it is still showing on scans..I am a 62 year old male that felt great two days ago..now night sweats the last two nights..

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Welcome to Connect, @muskegonsid. I’m glad you found us so that we can accompany you on this return to the “journey”. I’d like to introduce you to @maisyann @aamarion and @travelgirl. Also please meet @hopeful33250. She’s checked in to the cancer train for a third time, and is one of our Connect mentors.

Muskegonsid – what is your next step? Have you had an appointment with your oncologist?

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@colleenyoung

Welcome to Connect, @muskegonsid. I’m glad you found us so that we can accompany you on this return to the “journey”. I’d like to introduce you to @maisyann @aamarion and @travelgirl. Also please meet @hopeful33250. She’s checked in to the cancer train for a third time, and is one of our Connect mentors.

Muskegonsid – what is your next step? Have you had an appointment with your oncologist?

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Hi
Thankyou very much for your kind message. I was diagnosed nearly four years ago with follicular lymphoma NHL , stage 3, and immediately began chemotherapy R CHOP which I responded to extremely well. I then stayed on track with what we call the four pillars, vitamin D ( sunshine) , exercise, sleep and diet. I enjoyed a good lifestyle during this time. Last November however, I had another surge( transformation ) not sure of the terminology but it came back. I was then chosen to have a stem cell transplant . I completed the chemotherapy for preparation R ICE but unfortunately failed at the harvest time. The chemo worked for a short time but lymph nodes are on the growth again. I am classified as palliative and am having mostly a very good life.
I live in New Zealand so I know treatment may differ but I just thought it may be good to read how are people are dealing with similar prognosis etc
Thank you

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@muskegonsid I’ll join Colleen in welcoming you to Mayo Connect. It is a great online support group for those of us facing serious illnesses and trying to make the best of it! As Colleen mentioned, I have checked in on the cancer train for the third time this year. I have had a rare form of cancer, neuroendocrine tumor (also called carcinoid). While it different than NHL the feelings that go along with a cancer diagnosis are all similar. In some way, we all do our best to increase our education about our disease and to make the most of each day. I wish you well in your treatment!

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@colleenyoung

Welcome to Connect, @muskegonsid. I’m glad you found us so that we can accompany you on this return to the “journey”. I’d like to introduce you to @maisyann @aamarion and @travelgirl. Also please meet @hopeful33250. She’s checked in to the cancer train for a third time, and is one of our Connect mentors.

Muskegonsid – what is your next step? Have you had an appointment with your oncologist?

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Thank you so much for joining this group @designer. And welcome from down under. I’m sure @muskegonsid will very much appreciate hearing from someone with a similar situation.

You may be interested in joining the discussion about palliative and hospice care. IrvKay started the discussion to share experiences and to help people understand what palliative care means. https://connect.mayoclinic.org/discussion/palliative-care-and-hospice-care/ Would love to get your perspective.

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I would like to join a support groupl

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Welcome @vonbaron36 to our virtual support group on Mayo Clinic Connect for people living with cancer and specifically in this forum for people living with non-Hodgkin’s lymphoma. Please meet @lacey @lissa @caretothepeople @bobc @designer @muskegonsid @maisyann @aamarion and @travelgirl.

Vonbaron – we look forward to getting to know more about you. What type of NHL do you have and when were you diagnosed?

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@colleenyoung

Welcome @vonbaron36 to our virtual support group on Mayo Clinic Connect for people living with cancer and specifically in this forum for people living with non-Hodgkin’s lymphoma. Please meet @lacey @lissa @caretothepeople @bobc @designer @muskegonsid @maisyann @aamarion and @travelgirl.

Vonbaron – we look forward to getting to know more about you. What type of NHL do you have and when were you diagnosed?

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Hello everyone. I have follicular lymphoma. I was diagnosed two years ago. I had two radiation treatments. My PET scan 6 months ago did not show any signs of cancer. I have another PET scan scheduled for Sept.. I know my cancer is not curable but can be kept in remission for years. I am optimistic about living with it for many years to come.

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@colleenyoung

Welcome @vonbaron36 to our virtual support group on Mayo Clinic Connect for people living with cancer and specifically in this forum for people living with non-Hodgkin’s lymphoma. Please meet @lacey @lissa @caretothepeople @bobc @designer @muskegonsid @maisyann @aamarion and @travelgirl.

Vonbaron – we look forward to getting to know more about you. What type of NHL do you have and when were you diagnosed?

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Good to get to know more about you vonBaron. @travelgirl and @designer also live with follicular lymphoma.

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@colleenyoung

Welcome @vonbaron36 to our virtual support group on Mayo Clinic Connect for people living with cancer and specifically in this forum for people living with non-Hodgkin’s lymphoma. Please meet @lacey @lissa @caretothepeople @bobc @designer @muskegonsid @maisyann @aamarion and @travelgirl.

Vonbaron – we look forward to getting to know more about you. What type of NHL do you have and when were you diagnosed?

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Does anyone out there use curcumin or turmeric besides me.

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@colleenyoung

Welcome @vonbaron36 to our virtual support group on Mayo Clinic Connect for people living with cancer and specifically in this forum for people living with non-Hodgkin’s lymphoma. Please meet @lacey @lissa @caretothepeople @bobc @designer @muskegonsid @maisyann @aamarion and @travelgirl.

Vonbaron – we look forward to getting to know more about you. What type of NHL do you have and when were you diagnosed?

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Hi VonBaron36, my name is Lacey and I can relate to your condition, although I did not need any radiation, just chemo and my last one was o1-2015, been clean in all my blood tests since than. I feel good, only very tired side effects, I started taking vitamins and turmeric . I believe you have to keep yourself busy, keep involved with people and life, it really helps. Anything I can help you with by my journey so far, I’m here. Lacey

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@colleenyoung

Welcome @vonbaron36 to our virtual support group on Mayo Clinic Connect for people living with cancer and specifically in this forum for people living with non-Hodgkin’s lymphoma. Please meet @lacey @lissa @caretothepeople @bobc @designer @muskegonsid @maisyann @aamarion and @travelgirl.

Vonbaron – we look forward to getting to know more about you. What type of NHL do you have and when were you diagnosed?

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Hello @muskegonsid and @vonbaron36

I have follicular lymphoma and am on a watch and wait approach. The only signs I have lymphoma were found on a CT scan. The CT scan was performed after finding a cancerous polyp in my Cecum back on 12/23. Mayo clinic then performed a CT guided biopsy of a swollen para-aortic lymph node. That is how they found I had the follicular lymphoma. The lymph nodes have gone down in size since December when they were first discovered.

I have made changes to my life. maybe that is why?
1) NO MORE SMOKING
2) EATING as HEALTHY As I can
3) EXERCISING DAILY
4) CONSISTENTLY TAKING VITAMINS. lymphoma patients lack vitamin D ( go out in the sun each day for a few hours)
5) ELIMINATING STRESS

Vitamins I started taking daily are a probiotic, vitamin c, turmeric, enchencea, zinc, vitamin E, D3, B12, B1,B6,

I also just had my 6 month check up for my cecum cancer and happy to say there is NED.. my surgery in January removing a Foot of my colon was a success. I am on a schedule for a yearly colonopspy cause I have turned into a polyp farmer in my 50’s .. They found four in my colonopscopy last week. Blood work was perfect which it has been since day one when all this started, my CEA did go down from 2.4 to 1.6. CT scans look better too so they are now moved out to every six months . My blood work has
to be done every three months.

I wish you all the best and God bless

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