Connect
Non Hodgkin's Lymphoma- Watch & Wait Approach
I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.
I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Hi Sally, I also have SMZL diagnosed in May. Just hoping to connect with others to share info and support. Am currently watch & wait although my immunoglobulins getting lower. How have you been doing? Feel free to AMA, have done a ton of research and had 3 opinions at this point! Thank you, Lila
Hi Kathy! Thank you for the positive update! It’s always a relief when those scans are ‘unremarkable’ isn’t it? Been there myself many a time! ☺️
Finger’s crossed your bloodwork bounces back to normal range too! Just in time to head for Florida. I noticed in your bio you split your time between Wisconsin and Florida. We do too. With the cold weather today and the fireplace on, my mind started to wander to the Gulf. 😅. When do you leave?
@loribmt Hi there… was just looking through some notes and saw you asked me to let you know how my September
3 mo. scans went. Everything appears stable, no significant growth at this time. We would have been comfortable waiting 6 mos for my next scan, but some of my bloodwork came back low. My WBC was low, also my monocyte and lymphocyte numbers were low. So he’s having me come back in a month to re-check those numbers. Hopefully they go back up. I’m feeling good other than I have discomfort quite often in my neck when those affected nodes get really swollen. (They go up and down as most know!) Anyway, getting more use to this being my journey and learning as I go! One step at a time! Take care… catch you down the road!
Kathy
-
Like -
Helpful -
Hug
2 Reactions@quimbie Thank you so much for your reply. It is so helpful hearing of other’s experiences. When you say you had chemo for over 2 years, do you mean you were treated a number of times? I am so glad for you that you have had been in remission for a number of good years!! My biggest fear (when I allow myself to think about it) is that it may transform into LBCL while I am in the “Watch & Wait”. By the time it shows with symptoms or bloodwork changes it will have already transformed, which is more serious and a much harsher treatment needed. I’m doing my best to rest in peace with it and learn to live with it…. Most of the time I do very well in not letting it consume me. Thanks again.
-
Like -
Helpful -
Hug
3 ReactionsI had to wait 6 years before I received treatment. Had chemo for over 2 years and then cat scans until this year but get blood work every 6 months when see the Dr. Diagnosed in 2005.
-
Like -
Helpful -
Hug
1 ReactionWhen finally diagnosed with Follicular Lymphoma from a small lump on my throat it was wait and see. Had scans regularly. The doctor said it is a slow-growing tumor in my chest we will watch it. I had bone marrow test done and it was ok. This was in 2005. I had to wait for 6 years before I needed chemo. That is a long wait with Dr. visits and the worry and concern. I had chemo for over 2 years and finished last chemo at end of 2011. I see the Dr. 2 X a year for exam and had cat scan every year until this year the Dr. said my scans are not showing anything that needs to be addressed but they continue the blood work every 6 months. You have to stay positive and take care of yourself with rest and good food and family and do not dwell on what could be just concentrate on positive outcome. Sorry you have to face this. I can understand. I had both of my knees replaced this year and doing just fine. I will be 81 in couple of weeks and doing ok. Take each day as it comes with prayer and positive thoughts.
-
Like -
Helpful -
Hug
1 ReactionWelcome to Connect, @emmiet! Happy to help you find your way around the forum. ☺️
You popped into the non Hodgkin’s Lymphoma discussion. Have you been diagnosed with a lymphoma or blood cancer?
@loribmt Thank you for the navigation info. Today is my first day on this site, and I needed some pointers.
-
Like -
Helpful -
Hug
1 ReactionI’m so happy you joined the forum. I think you’ll find we’re a big family of support, encouragement and hope. So don’t hesitate to pop into any conversation! I’m one of the mentors for the Blood Cancer & Disorders group, along with Bone Marrow Transplants. I’ve had my own experience with an aggressive form of leukemia 5 years ago. Better living through chemistry, I’m here, cancer free and it’s my goal to help others realize there is hope after an unnerving diagnosis.
I think you’ll find your way around the forum fairly quickly. But take your time and explore the different groups, check out the Spotlight feature where you can learn more about some of the members, and there are health blogs, etc..
One way to find this particular discussion again would be to bookmark it. If you look at the lower right hand corner of this reply, you’ll see 3 dots …
Click there and the menu will show an option for Bookmark! Click bookmark and this reply will be saved. Then when you sign in again, you’ll be able to retrieve this page.
To do that, you have 2 options. Easy peasy is clicking on the Avatar (photo silhouette next to your @name on the left). That will take you to your personal page where you can view your profile. Click View Profile and the option for bookmarks will show.
Option two: In the upper right hand corner of this forum page, you’ll see a little ‘person’ icon. Click there and it will take you to a menu that says, profile! Click profile and it will take you to your personal page which will show your bookmarks.
And of course, the best way is to not wait until September to chat again. LOL. I’m on here many times throughout the day, along with so many other members who will toss you a lifeline. That’s the beauty of this unique forum.
To make sure I’m personally tagged in a reply, simply type in @loribmt ☺️
I love your positive ‘glass half full’ attitude. I’m right there with you! I refuse to worry about ‘what ifs’ because thoughts like those are just stressors and rob us of precious time. What are some of your favorite activities?
-
Like -
Helpful -
Hug
1 ReactionThank you so much for your comforting words and information. All of this is a learning process and also coming to terms with it! I most definitely will let you know how September appointment goes. I am just learning how to navigate this forum…. haven’t quite figured out how it works, feel like I’m fumbling my way through a bit. So I will try and find you here after my appointment. I am thankful for my ability to put “this” (my diagnosis) on a shelf until I need to address something. I am thankful for my optimistic attitude and always look at the glass half full instead of half empty!! So I know all will be well. Knowledge is Power… that’s why I joined this forum! Thanks again ❤️
-
Like -
Helpful -
Hug
1 Reaction