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Non Hodgkin’s lymphoma
Would like to find a support group in regards to non hodgkins lymphatic B cell.
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.
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.
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
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.
Hello Teresa, thanks for the help. I will check in my area for a group it sounds like a good idea. I see my Doctor soon and will talk about it then. Take care and God Bless you.
Hello travel girl , glad to hear it’s normal to be anxious. Thanks for the help. After 6 months of chemo I think I just get tired. I have tried so hard not to make everything about the cancer to live my live as normal as possible. I work full time . And that’s a challenge. My family has been supportive and is very good to me. Hope all is going well for you. Take care and God Bless you!
@remie Best wishes to you as you continue on your healing journey! Keep in touch.
@lacey Glad to hear from you.
Yes I been wandering the planet. since we last spoke. I been to DC and Mexico. The only time I am not thinking or stressing about cancer is when I am off on an adventure. But it is coming on the end of the year and now I need to focus on my business projects. I have started , so they are all done before 2017 rolls around. Plus traveling doesn’t help the waist line. Hard to diet and exercise when I’m on the road. I am determined to loose the 20 pounds I gained eating, Cause I thought I was going to drop 10 pounds overnight. Like the DR’s said may happen. They told me to NOT loose any weight until we see what’s going on..Shaking my head. So I gained it..Yes the word cancer messed with my head.. Also, I really wish I had a dog. God I miss having one. Where I live now no dogs are allowed. But traveling and dogs, yes that is hard. You need take them with you. There are many hotels that let you have dogs. So go visit.
I’m home now so I can answer a little quickly now. I go back to Mayo next month for another blood work checkup and to see the hematology DR. Well you have a nice weekend. I’m watching the cubs game Go Cubbies.:)
@remie I am finally over being tired. But I also had H-Pylori I caught somewhere in my world travels. That is how they found the Cecum cancer and the Lymphoma. Having H-pylori, colon surgery, 4 colonoscopies, and of course the not sleeping. I was exhausted constantly for several months. It was very hard to get out of bed. I work from home,so I seriously had to force myself beyond human understanding to work. That was one of the hardest things to do. Cause the last thing I wanted to do was work and deal with people. I seriously thought this, how do I survive 2 cancers? That kept playing on my mind. I kept going into cancer sites and reading. The more I read the more I got depressed. I was a royal mess. I joined a cancer support group at my church. Thinking this would help. That made me feel even worse. I had to stop going. They showed an end of life film about people dying. That was it, I swore I was dying. I was ready to call the coroner and let him know to prepare for the arrival of body. LOL.. Seriously My husband kept telling me to knock it off, I wasn’t dying.. I been doing better since my 6 month checkup back in August. All the tests they did were perfect. So there is No Evidence of Disease and the enlarged nodes have been shrinking on their own. My Biggest fear though in life has always been Doctors. So throw that into the equation of what I am going through. I have had to overcome a lot in the last year. I have always been the type that only went to Dr. as I would say “when I am on my death bed.” Seriously had to be sicker than dog to go. I think if I can drop the 20 pounds I gained, I will be back to my normal self. 🙂 Mayo Clinic connect is one site that has helped me too. Lots of positive stuff on here..
Hi Remie, My name is Roberta. I have hodgkin’s Lymphoma stage 4. I had my first biopsy in 2014 which showed the Type I had.Then I had 6 months of chemotherapy. ABVD. That is the drugs they used every two weeks on me. I had a port put in after the first chemotherapy because it hurt and my veins were not that good. In the end I saved my veins and the port was very helpful. It occurred to me that the chemo was saving my life. I found a certain comfort in that thought. Without it I would not be here. So when people asked me if I was afraid of having Chemo, I said it is saving my life. Your drugs will be a little different than mine because your cancer is different. Yet for us a lot is the same. For one, talking about it with people you trust can be very helpful. For me it was my cousin. He had non hodgkin’s Lymphoma like you. I began loosing my hair and decided to shave it off. I found it liberating to be bald and I wore scarves. Many wear wigs but I was more comfortable with being bald. I did not find this group until recently and I do wish I had had that opportunity. I did try but what I found was not that helpful to me. There is lots on line and I bet you have looked it up. I did not have the bone marrow test. My cousin did. He did say if they needed to do it again he would ask for a different anesthesia. The local just did not do the job. So that is something to consider. Someone needs to bring you to the hospital each time and wait for you. Mine started with blood work which they took from the port. All the staff are wonderful. Gentle and responsive so that was calming in a stormy unknown situation. If you have questions for the Doctor, write them down. In the moment it is difficult to remember. It is just the beginning and I am thinking of you as you begin this journey.
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