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I may have low grade lymphoma or it could be from inflammation
I’m very frustrated, during a MRI on my lumbar spine they found an enlarged retroperitoneal lymph node, I was sent to have a CT scan then a PET scan. I was then referred to an oncologist, I was told that I may have low grade lymphoma or maybe it was inflamed because of inflammation from my arthritis in my spine.
I was sent to have a needle biopsy but there was no clear path for a needle biopsy. I was next sent to a surgical oncologist who determined that he could not do the biopsy by laparoscopy either, the other option is too invasive at this point. I feel fine, my bloodwork is all normal. I am on the watch and wait plan, CT scan and bloodwork every 3 months.
So, basically I’m trying to figure out how to live not knowing for sure if I do or don’t have lymphoma!
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I have stage 0 CLL and my oncologist does not believe that is the cause of my extreme chills. Trying to see an Endocrinologist for help with that. I feel like I need a new body thermostat.
Hi Pat, welcome to Connect. It’s not uncommon for people with CLL or any blood cancer to have fever and chills, night sweats/chills. I had another form of leukemia and could not get warm sometimes. I often wished I had a blanket warmer like hospitals! 😁 Second best was just tossing throws in a hot dryer, then wrapping up for a while. Sipping hot tea, coffer or even hot water really helps heat up from the inside.
Is your red blood count normal? Anemia can be a cause of chills.
I’m posting a couple of links below for discussions with other members who also have CLL. More can be found by typing in CLL in the search window at the top of the page. The search will bring up a list of all the chats.
CLL - Symptoms at Stage 0 (with @normahorn and other members sharing their experiences with CLL)
https://connect.mayoclinic.org/discussion/cll-symptoms-at-stage-0/
CLL leukemia: Just diagnosed, what can be done?
https://connect.mayoclinic.org/discussion/cll-leukemia/
What has your doctor discussed with you about the mass in your uterus? Is this a fibroid that will require surgery?
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1 ReactionThank you very much I appreciate all the information the Mass on the Uterus is small so they are doing nothing at this time.
I had a pets an and showed many large lymphoid…again no biopsies at this time will have blood work in two months to see if any changes..
I am very weak and have chills..so thank you for your explanations very helpful!
I’m sorry you’re feeling so weak, Pat. That’s just an awful way to go through the day. Do you feel out of breath with exercise or walking? How long ago were your previous labs? Did they show that you are anemic? (Low red blood, low hemoglobin)
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1 ReactionI was in the hospital with severe pain in stomach all tests normal so they sent me home!
I’m seeing the cancer doctor next week for blood euro see if lymph node’s are the issue!
It’s good you have an oncology appt soon, for you peace of mind if for nothing else. I know you’ve been plagued with chills and feeling so weak. You might want to have a list of your questions ready for the doctor.
Also, did you have a bone marrow biopsy with the diagnosis of your CLL?
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2 ReactionsNo I didn’t
A bone marrow biopsy is not necessarily needed to diagnose CLL. Far less invasive tests determined I have it and the nature of mine. Between flow cytology, FISH, and chromosome BLOOD tests, my oncologist did not feel the need for more tests at this stage. I remember one poster who, and her mother, both have CLL and the mother only had a biopsy when treatment was deemed appropriate.
Hi Norma, It’s true a bmb isn’t necessary to diagnose CLL. Much can be determined through blood work alone, as you’ve seen in your own diagnosis with CLL. And it’s great that you haven’t required anything further.
However, with noticeable changes in symptoms, sometimes a biopsy is required to determine the progression of a disease from the perspective of the marrow which is at the core (no pun intended) of the cell manufacturing site. A biopsy can also help determine the extent of the disease, or the presence of other blood disorders not evident through blood work and the type of treatment that may be necessary. A bmb can be a very helpful, specialized tool in a hematologist oncologist’s diagnostic tool-box. 😊
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2 ReactionsThat is why I stated a biopsy is not needed at the stage my cancer is at. What is important is that the oncologist has the information needed for now. She is comfortable that she does. If we have good oncologists, I believe we should leave the testing needed up to them.