Member has chosen to not make this information public.

Posts (315)

5 hours ago · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@sograteful Swollen glands does not always mean lymphoma. The three major symptoms when it is active is drenching night sweats, weight loss without trying and a fever that will not go away.
In order to find out why my lymph nodes swollen? They have to biopsy the fluid inside of the swollen lymph node. Then they will do a Pet Scan and if the lymph nodes light up on that scan. The biopsy confirms the type of lymphoma. Which is what they did to me.
Then every 3 months for the first year they want blood work and CT Scans. So they can watch what the glads are doing. Mine shrunk with each scan.
Then they move you out to every 6 months. blood work and Ct scans. If it all looks stable. You get moved to 1 yrs. scans and every 6 months blood work.
After 3 years if everything is stable you visit the Hematology Dr. once a year.
I am guessing will go on, till we are 110 years old?
Cause with some lymphomas you can live that long. 🙂

I wish you the best..

7 hours ago · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@dianebrumbach I see you are new here on connect. I would like to welcome you to the community.
If you don't mind me asking, How was your lymphoma found? Did they by any chance, mention which type? There are about 65 different lymphomas.
Many are super slow growing. You could live an entire lifetime and never need a treatment.
@njnana is correct staging is just a number.

5 days ago · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@pammyzammy Welcome to connect and Thank you very much for sharing your story. It brings much hope to those who been diagnosed with NHL. I have been on a watch and wait approach for a little over 3 yrs now.

I just had my followup check up and since it has been over 3 yrs now, I been told that I only need blood work and Ct scans once a yr . I have had perfect blood work the entire time. The lymph nodes near my aorta are enlarged and are considered on the smaller side. I do not have night sweats, weight loss or unexplained fevers. If it wasn't for a CT scan you would never know I have signs of this disease.

I had colon cancer which is how they found the NHL. The cancer marker for colon cancer show no evidence of disease. So they are fairly certain that is was all removed.

The first 3 years after diagnosis is a tell tale sign if these diseases will become troublesome according to my hematology Doctor. So far so good for me too. He feels that my Follicular Lymphoma will not require treatment for years to come. He can't rule out I wont need a treatment at some point. But as of now not to worry having NHL.

I hope both our stories inspire others with NHL.

Again thank you for your post.

Sun, Mar 3 11:10pm · Three months after colon surgery in Colorectal Cancer

@idkaren what part of your colon did they remove and how much?
How many ct scans have they given you? How is your blood work since surgery?

They removed my cecum. The large sack like portion that the appendix dangled from .. I know the secum was responsible for pulling certain vitamins and liquids from the food. So some foods now process differently..

Different parts of the colon all offers different ways to process food..

Sun, Mar 3 10:32pm · Three months after colon surgery in Colorectal Cancer

@idkaren . I also went to see a dietician too. I had her research why illnesses and she helped with which foods to eat and those not too.
Many of the foods in my normal diet. Like hot peppers. Aggravated the issues..
Did your dr give you foods not to eat for awhile and slowly introduce back in your diet?

Asparagus did not settle well in my system. Now I can it.. I notice beets take awhile to digest now. When before surgery I never had an issue..

But do let your dr know about the issues after eating. Keep a log of your foods..

Wishing you the best. It takes time to heal. So don't panic..

Sun, Mar 3 9:23pm · Three months after colon surgery in Colorectal Cancer

@tracey430 Probably the best way to describe the issues would be after eating. It was like food didn't agree with my body. My stomach would swell up with gas after eating. My right side ached a lot. Like I was having a gallbladder attack. But my gallbladder was fine.

Sometimes i would eat food and with in 20 minutes I was on the toilet with diarrhea. Then I would feel sick..

Eat small meals if you can .. Stay away from processed food. Processed, soft cheeses, spicy and creamy foods kill me. Coffee and sodas are now a big No.
Keep track of what you are eating to see what causes you to feel pain. Cause I could normally eat in the past made me feel sick after surgery.

It took a long time to heal. I am not sure how old you are but the I can tell you at 53, it took like I said over 2 yrs to get back to normal.

I think being anxious after having the surgery didn't help either. The unknown of what was to come? Could also of messed with my body.
Cause I obsessed over what had just happened to my body. That didn't help I don't think?
Plus I kept reading everything online making myself even more freaked out. Online you tend to see the most severe cases of everything mentioned
When I played DR. Google it magnified my symptoms.

I hope this helps you?

Try keeping track of how you feel after eating. Is that when you feel the pain?


Fri, Mar 1 3:37pm · Three months after colon surgery in Colorectal Cancer

@tracy430 @idkaren @1943 @swatson @starlight @sallyg @joyce1
Hi everyone,
I had a colon resection on 1/10/16. I have to say I experienced pretty much what you all experienced after surgery. I honestly think it took over 2 years to get back to normal. I feel fine and everything is normal now.

But the Dr's also moved my Colonoscopies out now to 3 yr check ups. Instead every 6 months and once a yr. When did you all have your last colonoscopies?
I swear the cleansing solution they make us drink to check out colons causes our systems to go haywire for months. But this is just my opinion I am no Dr. It is either a coincidence that about after 1 yr of not having to get cleaned out. I am finally back to normal..

I had stomach pains on, and bouts of constipation and diarrhea.. Food just did not settle right for a long time. My stomach was swelling up. Now finally I feel my old self.

Please keep checking with your Dr's to make sure something else is not going on. I kept going to the DR to see why I felt sick? But once it got past a year after my last colonoscopy, I noticed my stomach issues had settled down. Coincidence or Not????

I don't know the true answer if a colonoscopy can create these issues for months afterwards?

I wish you all the best..

Mon, Feb 25 6:55am · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@susanlim @mrsalvingraves3 One thing I see we all have in common is Anxiety? This was brought on by being diagnosed with cancer. I think its a fear of the unknown? At least it is for. I also notice that is something I am not able to control. I been a control freak my whole life. So a cancer diagnosis is very difficult to handle. I can't control it's destiny. So that creates the anxiety.

When I was overly stressing, back when I was first diagnosed, I had pains that came from nowhere. Everything hurt on my body. I think I made it worse by reading so much online. The more I read, the more pain I felt. I had to start taking sleeping pills to get through the night. This way i wasn't up all night reading nonstop. I searched how does one die from lymphoma or colon cancer? I kept thinking back to my Grandpa's, and my Mom's deaths related to cancer. And I found myself doing nothing but focusing on dying. I had to change this. There were days I didn't get out of bed. Just read and cried all day. I would compose myself just enough to plan a client trip. Then when I finished that I went back my hysteria state.

It took a good year and half to stop freaking out. It has taken another year to get my confidence back. Going to the gym and working out helped. Taking long walks helped. I stopped focusing o,n my illnesses and started focusing on my life.

Do I have pain? I do every now and then. At times my I get chest pains, pains in my arms and headaches. Now are they related to lymphoma, I don't know the Dr says no. Lymphoma does not cause pain. Have I thought they just told me that so I don'y worry? Yes the thought has crossed my mind. I take a couple of Tylenol when it gets too bad.

We have sluggish working lymph nodes. I think at times they are going to hurt? I just start taking extra vitamin C, enchinacea, turmeric and a couple of Tylenol.
Drink lots of water, get a lot of rest, and a few days later I am usually feeling better.

I firmly believe anxiety plays a big part in the pain I am feeling. So my advice is try and exercise more walk a lot. Just try it and let me know if that helps?
Get out of the house and away from the computer.

Talk to you later,, It's time for me to get some exercise in and off to work..