Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLymphomaTeam Member asked a question 💭
Springfield, MA

I have MCL and just recently had a 3rd PET scan which showed I was significantly improved. My oncologist told me I was in remission and I was to start maintenance therapy on 6/12. I have a Doctor appointment the same day before this to explain all of this. Till then my anxiety and a new anger issue has arisen. I think I read too much and haven’t figured out what “remisssion “ means. Are they trying to keep the lymphoma from coming back or are they trying to prolong my life. Very confused and I… read more

June 1, 2024
 · 
Reactions

Answer Summary

Members rallied around a question about what remission means for mantle cell lymphoma, with most describing it as having no detectable cancer... Read more

Members rallied around a question about what remission means for mantle cell lymphoma, with most describing it as having no detectable cancer cells while acknowledging that blood cancers are typically manageable but not curable, requiring ongoing vigilance and often maintenance therapy. Several members shared their own MCL journeys, explaining that maintenance rituximab infusions every two months aim to keep the disease dormant and prolong remission, with some finding hope in their doctors' reassurance that they would live with lymphoma but not die from it. A recurring theme was the struggle with anxiety and overthinking, the importance of trusting one's medical team and asking questions directly rather than relying on internet research, and finding peace through faith, social connections, and focusing on living life fully rather than dwelling on fear of recurrence.

A MyLymphomaTeam Member

Steve my understanding is Remission / complete recovery mode is where there is no activity. Maintenance therapy is for insurance of the cancer not coming back. The factors taken into consideration are type grade etc.
Yes if you have questions by all means Ask for explanation. You must be a advocate for your health. Getting angry doesn’t bring resolution, it just upsets you. I am sorry you are dealing w this.
I used to read a lot of the stuff on line. There are some very deep dark places. You know it is best to ask your medical team members ie: oncologist. Medical Dr are helpful sure for basics. Your Oncologist knows a lot more.
After being told that the lump in my breast was nothing, I didn’t need a mammogram, And having to literally fight to be on the non urgent list. Then Wait for 6 weeks only to find I had breast cancer.
I told this Dr he should be fetching rocks at the bottom of the ocean. And fired him.
Then to be lied to by my Oncologist 2x, hearing his reasoning was unbelievable. I got rid of him as well.
I have a rock solid medical team now.
Anger messes w your mental being. 85% of beating cancer is mental.
You are in this to win, you need to have all your questions answered.
Stay strong! xx

August 29, 2024 (edited)
A MyLymphomaTeam Member

Great news, I’m in remission 5 months. I praise God I have a 2nd chance (it damaged my kidney but I’m still not on dialysis yet). I count my blessings each day (I’ve kept track of all my life successes/consults in excel, I was a scientist. Seeing everything extra I did in life makes me feel great

November 20, 2024
A MyLymphomaTeam Member

remission means just that. Could it return, sure but enjoy this gift God has given you. Stop reading into things that haven't occurred. I'm 4 1/2 years into remission and never think about will it return. I just enjoy what God has given me.

August 31, 2024
A MyLymphomaTeam Member

From my experience ... Remission means the cancer is inactive. The maintenance keeps it that way AND prolongs life. Hope this helps 😁

June 1, 2024
A MyLymphomaTeam Member

i was just at my oncologist last week and was thinking about the question you posed, and I asked him. Remission means there is no detectable cancer in your body according to him. So, like I said earlier, enjoy this gift God has given you with this second chance at life. BTW, I'm still in remission and the doctor says if I make it to 5 years it probably will never come back. Praise God!

September 20, 2024

Related Questions

View All
A MyLymphomaTeam Member asked a question 💭
Huntingdon, PA

A MyLymphomaTeam Member asked a question 💭
Lidingöbro, SE

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In