Lymphoma or Not? Watch and wait?

Posted by reneebarber77 @reneebarber77, Dec 7, 2022

Doc wrote: Informed patient that systemic treatment for low grade lymphoma is only indicated for “active disease” with evidence of progressive marrow failur, symptomatic splenomegaly or lymphendenopathy, and significant B symptoms. Otherwise, we recommend monitoring for an indolent process.

So what do I do? Wait, until I get sicker and die?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Hi @reneebarber77, A few months ago we had a discussion about smudge cells showing up in your blood work and you were concerned about the possibility of developing Chromic Lymphoid Leukemia. I believe since then you’ve had more blood work and followup visits to that original appointment. Where you given a diagnosis?

A little information on CLL
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
From what I’m reading with this latest comment, you’re not being treated for anything at this time! That’s great! You’re in a window of watchful waiting and it doesn’t, in any way, mean you’re ‘waiting to get sicker and die’.

What it does mean, from my understanding, is that you’re in the initial stages of a possible blood disorder but it may or may not develop into anything needing treatment. These ‘smoldering’ low grade lymphoma diseases can take years to progress and sometimes don’t change at all. Your doctor is waiting for signs of an ‘active disease’ before there is treatment given. If that happens, there are meds that can be given to slow the progression.

In the mean time, don’t live in a “what if” mind set. That is a time waster and an anxiety builder. What you can do is live your life to the fullest daily. IF something progresses, THEN you’ll have treatment. In the meantime, put this to the back of your mind and exhale! ☺️

Did you sit and talk with your doctor about the note he’s written? How often are your followup blood labs run?

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I will be having a biopsy soon, she ordered one just do not know when it is. But thank you, I feel a little more relieved. I was being a bit dramatic, and annoyed. I appreciate your comment.

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@reneebarber77

I will be having a biopsy soon, she ordered one just do not know when it is. But thank you, I feel a little more relieved. I was being a bit dramatic, and annoyed. I appreciate your comment.

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@reneebarber77 You're "allowed" to be very anxious and annoyed about the "wait and watch" recommendation. This is a very frightening time for you and anytime you can put how you are feeling into words then that's a good thing. No one here will say "oh, don't worry" because we know that's not possible and in fact is denying a person in how they feel. The advice of @loribmt is helpful. Whenever you find yourself slipping into the "what if" thinking then take a look at that and rephrase the thought to yourself with the realization that some things you can control and some things you cannot control. Please give yourself credit for following up with your medical care (this you can control) and doing everything you can to take care of yourself. That's huge. 😃

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@reneebarber77

I will be having a biopsy soon, she ordered one just do not know when it is. But thank you, I feel a little more relieved. I was being a bit dramatic, and annoyed. I appreciate your comment.

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Oh believe me, I know the drama associated with blood issues. When you’re faced with an uncertain diagnosis you want answers and some hope tossed into the mix!

It will be good to have the bone marrow biopsy. That’s goes right to the source of the blood manufacturing site in your body and can answer a lot of questions.
Don’t be hesitant to talk with your doctor and press for answers to your questions. This is your life and you would like to have some answers, assurances and reassurances with a diagnosis hanging out there.

Your hematologist/oncologist sounds like she’s being proactive and following your situation. She isn’t being dismissive. Sometimes there simply is nothing that needs to be done at this time. ☺️ You’re being monitored so nothing should sneak up and surprise either your or your doctor.

Thought I’d toss out a little plug for my adventure in leukemia. We can face the worst and still live a full and active life. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

Have you had a bone marrow biopsy before?

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Renee:
A watch and wait situation is the best news possible. I was diagnosed with stage 4b hodgkin's lymphoma in early 2019 after 8 days inpatient at mayo clinic. After 6 rounds of chemotherapy, biopsies, numerous scans, and monoclonal therapy infusions, then diagnosed with non hodgkin's follicular lymphoma a year later, I wish I was initially in a watch and wait period. How are you doing now; December 2022?

Best wishes,
Don Castle,MPA

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@amtrakian

Renee:
A watch and wait situation is the best news possible. I was diagnosed with stage 4b hodgkin's lymphoma in early 2019 after 8 days inpatient at mayo clinic. After 6 rounds of chemotherapy, biopsies, numerous scans, and monoclonal therapy infusions, then diagnosed with non hodgkin's follicular lymphoma a year later, I wish I was initially in a watch and wait period. How are you doing now; December 2022?

Best wishes,
Don Castle,MPA

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Hi Don, my husband was diagnosed with Non Hodgkins follicular lymphoma last fall. Scans, bone biopsy… Watch and wait didn't last long. He'll be starting treatment at Mayo pretty quick – bendastamine and Rituxin (sp?) for 6 cycles. Is this the treatment you had? Would you mind sharing your experience with treatment? He's 75 years and very active. Hoping the side effects to will be minimal. Thank you!! Sheri

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Just had my second appt with my hematologist/oncologist. I'm wait and watch. Next appt in 6 months. Id say the news is about as good as it will get.

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@dringge

Just had my second appt with my hematologist/oncologist. I'm wait and watch. Next appt in 6 months. Id say the news is about as good as it will get.

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Hi @dringge, I know that first appointment clipped you off at the knees. Anytime we get a diagnosis we’re not expecting it sure is overwhelming.

If I remember correctly, you were diagnosed with CLL? That is generally a slowly developing condition so you may go many years without needing treatment. Were you a little better prepared this time to be able to ask some questions? Before your diagnosis, were you having symptoms or was this just discovered with a routine physical?

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Yes the diagnosis of CLL really caught me off guard. I show no symptoms other than a high white cell count which was caught in a pre surgery physical. I had some vertebrae fused in my neck. Im 71 and relatively healthy and active. I was better prepared for my second appointment and asked a few questions and got answers. Its still hard to know what to expect and to question. I have to say that I think I am getting great information here.

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@dringge

Yes the diagnosis of CLL really caught me off guard. I show no symptoms other than a high white cell count which was caught in a pre surgery physical. I had some vertebrae fused in my neck. Im 71 and relatively healthy and active. I was better prepared for my second appointment and asked a few questions and got answers. Its still hard to know what to expect and to question. I have to say that I think I am getting great information here.

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It’s wonderful to see you feel you’re getting great information here. 🙃 That’s the goal of this forum to help other members find answers, to offer encouragement and feel like you’re part of a larger family. I think it helps to feel you’re not alone in your new medical journey.

A little more information for you if you haven’t already seen this article from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
Another great source is the Leukemia and Lymphoma Society
https://www.lls.org/research/chronic-lymphocytic-leukemia-cll#:~:text=Chronic%20Lymphocytic%20Leukemia%20%28CLL%29%20Over%20the%20past%2010,of%20too%20many%20white%20blood%20cells%20called%20lymphocytes.
There are other members I’d like to introduce you to who also have CLL or family members who do. Their ongoing and current conversation is in the link below.
@alinatl @kellim @valeriewiegand @5gk @justinesmith

CLL leukemia: Just diagnosed, what can be done?
https://connect.mayoclinic.org/discussion/cll-leukemia/
Don’t hesitate to pop into any conversation to ask questions. If you see a discussion you’d like to reply to directly, make sure you click the ‘blue reply’ button or enter the person’s @name. That way they will get a notification that you’re responding to them.

I know it can be difficult in the watchful waiting” period. You might feel like it’s a ticking time bomb. I’d encourage you to let feeling that go. Don’t live in fear of the future! Go about every day as normal and enjoy life. You’re being monitored and if there are any changes, they will be caught early. You may be fortunate and never need treatment. But there are options if you do.

It’s great that you’re active! Don’t stop moving! 🙂
How is your neck from surgery?

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