Fatigue.. bloods good. Is remission over and SLL back?

[Shedman]

SLL 2016 - bloods good, bulky lymph nodesBR x6 rounds 2019

Remission

2024: bloods all good - bad fatigue is back

Is remission over, or is it something else?

Had a thought: if I took steroids, that would typically 'flush' the CLL cells out of hiding in my lymph nodes.. then a blood test would better see the situation..

But what test is the likely correct way to know the true situation?

[lankisterguy Volunteer]

Hi Shedman,

My GP & Hem/Onc tell me that fatigue is their least favorite symptom, since there are so many possible causes, it takes many tests and lots of time to eliminate each potential cause, and in most cases they cannot find a definitive cause. So most docs will not want to start that process.

So your medical team will likely look for the common causes like low iron, low D3, low B12 etc. And since you mention SLL, they would need a CT Scan or Ultra Sound to determine if you internal nodes are growing.

I hope you can find some help.

Len

[Shedman in reply to lankisterguy]

Thx. I am aware that as symptom, fatigue is trouble.. have been pausing here myself, but it is pretty bad for some weeks.I doubt there's an issue with my b12, D, nor iron.

My query is more of what can be done with me as an SLL type presentation..

What if end of remission sees SLL presentation again..

Is there any shortcut to sighting real CLL blood count?

Ultrasound won't spot SLL cells amounting to the CLL equivalent of 16 x 10⁹ .. a modestly raised score.

2019. Steroid treatment saw my blood count rise from 16 or 40 to 270 (x10⁹) .. it flushed the blighters out of hiding.

[LeoPa in reply to Shedman]

CT. How is your blood count now? Within the normal range? 8 years on BR is quite an amazing remission.

[Shedman]

Bloods normal.It's 4.5yr remission.. so far

[Bobby9toes]

I’m new to all of this, having been diagnosed with SLL in December. My oncologist had me go in for a Pet Scan. This showed where the cancer was in my lymph nodes. She showed me the results on her screen and my abdomen and chest lit up like a Christmas tree. Fortunately it is only in my lymph nodes and not in my blood or spleen. In 3 months I will have another scan to see how well the Calquence is working. I was really tired for a while, but back to normal now. I hope you are still in remission. Hang in there.

[Shedman in reply to Bobby9toes]

In the UK it's unlikely my fatigue would come close to justify a PET scan.But it would show whether something CLL related was afoot.

I'll likely look at iron issues next.

[SurfSurf]

Hi Sherman,

Maybe worth asking your Dr. to do a blood blood test for "iron stores," or at least that is what my Dr. called it. After months of fatigue, they did the iron store test and due to low iron stores, gave me 5 treatments of iron IV (very short, no issue, no problem no side effects), and I take Ferrex 150 mg now on mon/wed/fri and my fatigue has lifted. Just a thought. I hope you get some relief soon!

Susan

[Shedman in reply to SurfSurf]

I'll get my iron reviewed. Thank you.

[SurfSurf in reply to Shedman]

Wishing you less fatigue soon!

[LynnB1947]

When I was being treated at MDA in the Lymphoma & Myeloma Clinic, my doctor had me get an annual CT scan with contrast while I was on ibrutinib. At the beginning of treatment, I was getting a CT scan every 3 months. I think I've had about 20 CT scans since I was diagnosed with SLL.

I am now on a drug holiday & being treated at UTSW-Dallas by Dr. Farrukh Awan. I asked what he would expect to see in the blood work when the SLL begins to re-emerge. He said he would expect the RBC and/or platelets to begin dropping. I expect if I began having intense night sweats, and fatigue, he would order a CT scan to verify. All my enlarged lymph nodes were internal except for two in the groin.

BTW, I had 40-70% bone marrow involvement at diagnosis.

Wishing you the best ... LynnB