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maisyann
@maisyann

Posts: 4
Joined: Mar 21, 2016

Non Hodgkin's lymphoma

Posted by @maisyann, Mar 22, 2016

Non Hodgkin’s lymphoma

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

REPLY

@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!

@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.

I would like to join a support groupl

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?

@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.

@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.

@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.

@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

@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

Liked by medo22

Hello I am new to this group. I have follicular lymphoma stage 4 grade 2. I was diagnosed in April . And have finished 6 months of chemotherapy treatments. And now going for tests on the 31 of October. I am having a bone marrow biopsy, and a colonoscopy and a pet scan. I am feeling a bit anxious. I have been able to keep my emotions under control but lately not so much. I wondering is this normal?

@remie

Hello I am new to this group. I have follicular lymphoma stage 4 grade 2. I was diagnosed in April . And have finished 6 months of chemotherapy treatments. And now going for tests on the 31 of October. I am having a bone marrow biopsy, and a colonoscopy and a pet scan. I am feeling a bit anxious. I have been able to keep my emotions under control but lately not so much. I wondering is this normal?

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Hello Remie, my name is Lacey and I had non-hodgkins lymphoma, stage 4, that was
back in April 2014. By Jan. 2015 everything was in remission and so far, I am doing
fine, I go for a cat scan every 6 months, my next one is due in Jan. 2017. I did not need
a bone marrow test, but I did have the colonoscopy in the beginning. I did join a support
group called Livestrong and I love it. There are 15 other people in the group who are
survivors from different kinds of cancer, it is held at your local YMCA, inquire at yours and
join when they start the group in your area, you won’t be sorry. Iam here to help and
answer any questions you may have, been there, done that. God Bless, Lacey

Hello, @remie, and welcome to Mayo Connect. While I have not had the type of cancer that you mention, I have survived three surgeries for cancer (carcinoid) in the past. I’m sure that as others in the Mayo Connect community read your post, they will agree that anxiety is certainly normal in your situation. I would, however, encourage you to call your doctor to discuss this, especially if you feel that it is getting out of control.

A cancer support group would probably be very helpful as well. The American Cancer Society has support groups all over the U.S. Often, sitting and talking with people will help alleviate your feelings of anxiety. Please keep in touch and let us know how you are doing. Mayo Connect is a community that “walks with folks” facing serious health problems.

@remie

Hello I am new to this group. I have follicular lymphoma stage 4 grade 2. I was diagnosed in April . And have finished 6 months of chemotherapy treatments. And now going for tests on the 31 of October. I am having a bone marrow biopsy, and a colonoscopy and a pet scan. I am feeling a bit anxious. I have been able to keep my emotions under control but lately not so much. I wondering is this normal?

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i@remie TOTALLY NORMAL being Anxious…. I can tell you when I was I told I had 2 primary cancers in a 2 week time span Last December and early January this year. Well that was the first time I actually Hyperventilated in my life. I couldn’t stop crying for weeks, I couldn’t sleep. I had to start popping sleeping pills so I could fall asleep. And I was on a Gerd diet for my acid reflex prior. I was like are they kidding? I am over here torturing myself starting eating this junk, living like a bird. . I started eating like I was going the electric chair. Now I gained 20 pounds.

They had me so freaked out I was told on 12/19 last year I had stage 1 Cecum Cancer. Then they did a CT Scan and found swollen Lymph nodes near my Aorta which I let them Biopsy, and that came back Grade 2 stage 2 Follicular Lymphoma… Then when they cut out a foot of my Colon they sampled 20 more lymph nodes. They were clean no colon cancer. I go well that’s good Did you test them for Follicular Lymphoma? Sure enough a few came back positive for the lymphoma. They upgraded me to a stage 3 now.

I have zero symptoms in which they would treat you. The symptoms they treat are night sweats, a temperature that wont go away or a 10 drop in weight without trying.

I wont lie part of my no sleeping problem has been the words “When you will have drenching night sweats”. I keep waking up checking to see if I am sweating.

I have perfect blood work. My Lymph nodes have been shrinking with every CT Scan I have had since last December. I have had 3 scans since then. My Next Ct Scan Is in January. I have to have blood work done every 3 months.

This week I am starting on a massive diet plan. NO MORE feeling sorry for myself. I literally get depressed thinking of the word CANCER . I HATE that word. I can not kept waiting for these so called symptoms to appear. Cause I literally talk myself out having energy. I am back at the gym with a trainer 3 days a week and I am starting on a diet. It has been now 10 months and I have to have any symptoms waiting for all what they claim could happen. If I keep waiting around I’m going to be 300 pounds.

We Cannot let the a Disease control us. We need to be the ones in control..

I wish you the best and cheer up.. There are many more going through the same. We are here to help each other.
God Bless

@remie

Hello I am new to this group. I have follicular lymphoma stage 4 grade 2. I was diagnosed in April . And have finished 6 months of chemotherapy treatments. And now going for tests on the 31 of October. I am having a bone marrow biopsy, and a colonoscopy and a pet scan. I am feeling a bit anxious. I have been able to keep my emotions under control but lately not so much. I wondering is this normal?

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Hey my friend, how is travel girl these days, your too strong to let things bother you, so
relax and enjoy life for as long as God wants us to be here. I was wondering what happened
to you,haven’t heard from you in soooooo long haaa. Your just a ” traveling gal. I wish I could
travel some, but my 3 doggies say NO. My family is angry with me because I haven’t traveled
to Illinois to see the new baby, I told them I did that during my working years, now it is their
turn??? I am feeling fine, hope it stays this way. I know what you mean about gaining the
weight back, I lost 40 pounds when I got sick and gained it all back, oh well, getting in the
exercise and sleeping 8-9 hours a night. Take care my friend. Lacey God Bless

@remie

Hello I am new to this group. I have follicular lymphoma stage 4 grade 2. I was diagnosed in April . And have finished 6 months of chemotherapy treatments. And now going for tests on the 31 of October. I am having a bone marrow biopsy, and a colonoscopy and a pet scan. I am feeling a bit anxious. I have been able to keep my emotions under control but lately not so much. I wondering is this normal?

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Hello Lacey, I will check out the group live strong. That sounds good. I will check my area for a group. Glad you are doing good. I have been doing good I think I am so tired some days I can’t think straight . I am still working full time in an office. That gets to be a challenge. Thanks for answering me. Take care and God Bless you too.

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