The following is the chest CT scan. I'd appreciate your words of wisdom, encouragement, and advise. Treatment, it seems, is warranted. I have a scheduled appt with hem/onc on June 20, 2024. I'm a little nervous.
Again, thank you for listening.
Pat
Interval enlargement of bilateral axillary, bilateral supraclavicular, bilateral hilar and mediastinal lymphadenopathy concerning for progression of disease.
Enlarged micronodules along the horizontal fissure with new subpleural nodule in the left upper lobe. This may be related to intrapulmonary lymph nodes.
IMPORTANT FINDING. THIS REPORT WILL BE FLAGGED (!) IN EPIC.
CT CHEST WITH IV CONTRAST
CLINICAL INDICATION: 1.restage SLL
COMPARISON: 5/30/2023
TECHNIQUE: Contrast enhanced CT of the chest was performed. Multiplanar, (axial, sagittal and coronal) CT and HRCT images were reviewed. 125 cc of nonionic Isovue-300 IV contrast was administered.
FINDINGS:
LUNGS, AIRWAYS: Few subpleural micronodules noted bilaterally, some annotated on series 4. One of these nodules is slightly enlarged in interval (series 4, image 159) and another nodule in the left upper lobe is new (series 4, image 152). No discrete focal consolidation. No endoluminal lesion.
PLEURA: No pleural effusion or pneumothorax.
MEDIASTINUM, HILA, LYMPH NODES: No dominant focal lesion is noted in the thyroid bed. Interval enlargement of massive bilateral axillary lymphadenopathy. For example the largest lymph node in the left axilla measures 5.9 cm x 3.7 cm (series 5, image 191), previously 4.3 cm x 2.8 cm (series 10, image 49) or the largest lymph node in the right axilla measures 5.0 cm x 3.1 cm (series 5, image 192), previously 3.6 cm x 2.4 cm (series 8, image 164).. Interval enlargement of bilateral hilar and mediastinal lymphadenopathy. For example a right hilar lymphadenopathy now measures 2.8 cm x 1.7 cm (series 5, image 239), previously 2.1 cm x 1.5 cm (series 10, image 67), a right lower paratracheal lymph node measures 1.5 cm x 1.2 cm (series 5, image 203), previously 1.2 cm x 0.9 cm (series 10, image 60) or an AP window lymph node measures 2.3 cm x 1.1 cm (series 5, image 194), previously 2.1 cm x 0.7 cm (series 10, image 57). Conglomerate left supraclavicular lymphadenopathy measures 3.4 x 2.9 cm (series 5, image 26), previously 2.9 cm x 2.7 cm (series 8, image 38).
HEART AND VESSELS: Stable heart and pericardium. Stable great vessels of the thorax.
UPPER ABDOMEN: Please refer to additional report for CT of the abdomen from the same day.
BONES AND SOFT TISSUES: Stable regional skeleton. No evidence of aggressive lytic or blastic lesion.
I've edited your post titles, included links in each post to your other post and switched off replies to your first post, so that members will just reply to this post. In future situations like this, I suggest you reply to your first post to add details of additional scans. You might also like to make this post private to this community to encourage more replies. See: healthunlocked.com/cllsuppo... If you would prefer that both posts be made private, I'll need to change the first post for you, otherwise others wishing to learn about CT scans for CLL will be able to find our community through that post.
With respect to your scan results, these need to be interpreted with respect to our pinned post healthunlocked.com/cllsuppo... I'm not medically trained, let alone a radiologist, but I just see progression of your SLL here, not an indication for treatment, though your specialist may well decide otherwise, based on their experience and expert assessment. According to the iwCLL and NCCN guidelines, the node size trigger for commencing treatment is when they exceed 10cm or 4 inches in the longest dimension.
Pat, there's no need to apologise about the post length if that's what's needed to share your results! The HU site did impose a character limit a year or so ago, so that posts would load faster, but you can just keep adding replies to get around that limitation where necessary
I don’t understand all the technical abbreviations, numbers, etc. but from what I can understand, it looks like some of your nodes have increased in size. You didn’t say if you are on treatment now. I, too, have SLL and am on Acalabrutinib once a day. I am scheduled for my second PET scan next week to see how the meds are working and if I need to increase to two a day. You need to trust what your doctor recommends. I’m sure you will be just fine. Good luck.
Thank yo for responding, Bobby. I remain in watch and wait but scheduled to see the hem/onco at NYU on June 20,2024. SL is similar, if not the same, as CLL. Nodes are fairly large. Nodes increased by one cm in just over a year. That's indolent, I guess?
Hi Pat, actually my name is Jan. Bob was my husband who passed away 6 years ago. I called him Bobby 9 toes because he had his big toe amputated due to cancer in it. Both SLL and CLL are very similar and use pretty much the same treatment, but it is my understanding that SLL keeps to our lymph nodes while CLL travels through the blood as well. Of the two, I’m glad I have SLL. The surgeon who removed my lymph node told me that what I have is the easiest to treat and not life threatening. I’m new to this as I only found out I have lymphoma in December and have been on Acalabrutinib since late January.
I know that SLL is trickier than CLL to decide when to treat. I think you can start treatment if you want, or you could wait. Guidelines usually want additional indications. Your spleen isn't that large. I'm sure that 5.9cm axial lymph node is uncomfortable at least. I haven't seen CBC/differential evidence in your previous posts that indicate that marrow is getting full. Much could also depend on your FiSH results, fatigue level, B-symptoms like night sweats.
If you don't mind the technical lingo, you can create a free patient account and download the full NCCN Guidelines document:
I have no fatigue; I walk about a day, carry bags of groceries on Saturday mornings, night sweats are fairly mild and not every night. If the window is open and I'm not wearing a T shirt or the fan or A/C is on, I'm ok.
You sound asymptomatic & your CT Scan shows some progression. I’ve seen no bloodwork but it looks like Wait & Watch continues, lucky you. My advice would be to enjoy W&W as long as possible, take every safety precautions but live your life. My first Oncologist told me that this condition wacks & wanes. Do not rush to treatment & anyone who tells you otherwise is not of good counsel… Put that sucker off indefinitely if you can. #GODSPEED🙌🏾
What I have trouble with is the following: Addendum
Indeterminant lesions in the right and left kidneys. MRI of the abdomen is recommended for further evaluation to exclude underlying neoplasm.
IMPRESSION:
Increased size of the abdominal and pelvic lymph nodes. Hypoattenuating lesion in the spleen are worrisome for neoplastic process. The lesion is 0.7CM X 0.5 CM or 7mm X 5 mm.
Spleen cancer is very, very rare and I suspect that what's been observed in your spleen is most likely due to your SLL. It's fairly common to find lesions on scans which are usually benign, such as those reported in your kidneys, but now they've been found, you'll most likely be recommended follow-up scans to confirm this. See: healthunlocked.com/cllsuppo...
When you have CLL/SLL, you can look at scans finding potential secondary cancers and other diseases early when they are more curable, as one potential benefit of having a chronic cancer, where most of the time we are being monitored, not treated.
Hemoglobin: 9.9 g/dL.That's a drop from 10.5g/dl and just under the the threshold for commencing treatment. So I agree that you need to commence treatment. You haven't shared your FISH, etc., results, but you can read how others have done with your:-
nuc ish (MYB,ATM,TP53)x2[196/200],(CCND1,IGH)x2[190/200],
(D12Z3,D13S319,LAMP1)x2[196/200] NORMAL
Interpretation
View trends
FISH results are consistent with NORMAL results for the probes tested in CLL panel. Correlation with other clinical and laboratory findings is recommended.
Methodology
View trends
Interphase fluorescence in situ hybridization (FISH) was completed on Peripheral Blood specimen using a panel of DNA probes (Abbott Molecular Inc., Des Plaines, IL) for the following loci: TP53 (17p13.1), ATM (11q22.3), D12Z3 (CEP 12), D13S319 (13q14.3), MYB (6q23) and LAMP1(13q34). In addition, FISH was completed using the Vysis LSI Dual Color, Dual Fusion, Translocation Probe for CCND1 (11q13)/IGH (14q32). Leica cytovysion application system was used for the analysis and capturing the images. A total of 200 nuclei were analyzed for each probe.
It seems you have the same FISH results as me - the misleadingly termed 'Normal' Karyotype. This just means that they haven't found any of the commonly checked chromosomal abnormalities. That usually corresponds to a reasonable time to first treatment, so you must be disappointed that you only managed a year in watch and wait, rather than the indicated 5+ years. I don't recall seeing results from testing your IGHV mutation status. Given your short time to first therapy, you are probably IGHV unmutated. Thankfully we now have very effective treatments available, irrespective of IGHV mutation status.
Like you, I initially began my diagnosis with the 'SLL' expression of CLL/SLL, but unlike you, my lymphocyte count increased so that it became 'CLL' a couple of years later. At diagnosis, my specialist simply said I had CLL/SLL, without explaining that they had historically been categorised as different blood cancers prior to 1994. As you have probably since read, nowadays it can depend how your CLL/SLL was diagnosed; a positive flow cytometry test on a lymph node for CLL/SLL and it's SLL, when performed on a blood sample, it's CLL. Interestingly, my haemoglobin at diagnosis was barely into the normal range, again like you. After treatment, my haemoglobin improved to above my best ever prior result, which was back a few years prior to my diagnosis.
May I recommend you update your profile bio and include a precis of your results? Here's a quick link to your bio: healthunlocked.com/profile/...
I note that you've been recommended to commence acalabrutinib maintenance therapy, then V+O (venetoclax/obinutuzumab/Gazyva) for your second line of therapy. Covalent BTKi maintenance therapies such as acalabrutinib, typically keep CLL/SLL under control for around a median of 6 years, though some early trial participants have been on the first approved BTKi drug ibrutinib/Imbruvica for over 10 years. You do need to start treatment fairly soon, as the drop in your haemoglobin indicates that your bone marrow infiltration is probably fairly high, though your platelet count is still quite reasonable at 138. You might like to discuss with your specialist the pros and cons of having that V+O combination treatment first and then enjoying a drug holiday, but I recommend you don't delay starting treatment too long. (My platelet count was in the low 50s and my haemoglobin 10.5 prior to starting treatment. While I needed a couple of packed red blood cell transfusions to get me through the first month of acalabrutinib treatment, it's now over 3 years since I finished treatment and my blood counts remain good.)
Thank you but I think we're about to start treatment. I've been on watch and wait for one year. It's been three years. I first noticed a lump in the left axilla, but the radiologist concluded (only a sonogram) that it was benign but a biopsy was not performed. The internist followed my bloodwork but never did anything. I fell on May 14, 2024, and landed in the ER at New York University and found enlarged and nonenlarged nodes in my neck, and was instructed to follow up with hem/onc. So, I've had nodes in my neck, left and right axilla, and much more in the left, and groin.
I love your bloodwork except for the Hgb. CLL is a gateway cancer like marijuana is a gateway drug. Some stay right at the gate & others explore. I can only tell you what my PMD said in the beginning, continue testing until they have a clear picture & treatment plan. I am sorry though because it sounds like layers to uncover before things are clear. May GOD have Mercy🙌🏾
Yes it is an amazing site. I am 15 days off Zanubrutinib treatment for 13 months & days 5-10 were really bad but now feeling more normal. I feel my Fatty Liver like I did before treatment, sweating like a pig, still weak & a bit achy. All Liver enzymes are elevated like never before but I pray its just my adjustment period. Total Cholesterol dropped from 225 to 160 in two months. So its after my Liver now. Lab work every 3 weeks, I just want this Summer before treatment starts back. I got to learn more about this proposed O&V 🤦🏽♀️.
Get your Hemoglobin up with Leafy Greens 🥬 but your asymptomatic status sounds like treatment is still a bit off.
Calquence/acalabrutinib was recommended. I also had the option of venetoclax and Oben, also known as fixed duration, but requires a hospital state and ramp up. We also talked about pirtobrutinib, stem cell transplant and CAR T was just approved, but I may never need it. The treatment landscape is changing quickly and calquence is considered maintenance therapy (about six or seven years), treatment will be very different in seven years. CLL/SLL may be curable or functionally cured. What are your thoughts?
Yes, I remain asymptomatic but according to the hem/onc, nodes have increased and treatment is warranted. We can start in three months but not three years. According to the NCCN guidelines, treatment is warranted if nodes are 10CM or more. My nodes (that's only the three largest) are 5 CM, which increased 1 CM in one year. Plus, hemoglobin is down but I generally feel well.
Well the wise people on this site recommended that I start treatment before things get really unstable because 1) you don’t know when you’ll actually get the meds 2) you don’t know how you will respond to the meds & 3) you want to have time to switch to another drug if need be. I started 6 months after my WBCs doubled, but right around when Plts & Hgb dropped significantly. WBC 81, Plts 76 & Hgb 10.8
I liked Acalabrutinib except for them awful headaches that lasted 13 days for me & I am allergic to caffeine but did stay hydrated. The bone/joint/muscle pain I felt with both Acalabrutinib & Zanubrutinib.
Acalabrutinib is much milder & more tolerable. I only switched back because I had an untreated Respiratory Infection that caused Chest Pain & Pressure & Zanubrutinib could be reduced to 1/4 the dose (80mg daily) so I stayed on that low dose while I recovered from that 3 month untreated/under treated infection. The BTK Inhibitors are truly amazing, my Neck Adenopathy of 10yrs reduced/resolved in 3 days.
They are truly amazing at how quickly they work & turn your labs around. I was mesmerized like everyone else but I felt like crap & I did not want to complain toward the end. So please report any untoward side effects early, do not do strenuous exercise/work during the first 30-90 days to give your body time to adjust.
Treat any infection promptly, properly & even prophylactically which is stated in the medication insert which you should read top to bottom. Do not start the medication on a weekend so just in case you need to run up into your doctors office. I know how many doctors & some even on this site make a big distinction between BTKs & Chemo, its strong medication by any name & you best tread cautiously.
The medication can exacerbate some of your W&W symptoms like brusing, fatigue or immunocompromised status, etc. Its just the nature of this beast. I still wear a mask around people indoors & require healthcare workers to put one on for any close contact care with me. I will never forget being made to beg for antibiotics & still being denied by 2 Oncologist & 2 Pulmonologist! So I don’t play with my health nor allow anyone else to. I envy those who say how great they feel after starting treatment & I pray that will be your new reality, but you’re asymptomatic, right? Well I know your labs will improve & hopefully shrink your lymph nodes. #GODSPEED 🙏🏾🙏🏾🙏🏾
Yes, I am asymptomatic. I have no infections, feel well, my appetite is excellent@ and ambulatory, and no fatigue. Also, I just retired. Many, if not most, have retired or semi-retired. According to the hem/on, side effects are manageable and transient. Side effects are headache, as you said, fatigue, joint aches and pains, and diarrhea. Please correct me if I am wrong but you're a nurse? Are you currently working full or part time? The BTK Inhibitors are truly amazing, my Neck Adenopathy of 10yrs reduced/resolved in 3 days.
Oh I am so glad its working for you & with retirement you can take it easy while you adjust. Yes I am a retired Federal RN. I stopped even HomeCare Infusion Cases in 2021 after contracting Covid Pneumonia & because I never would take that vaccine when it was mandated in NYC. I am part of many health initiatives so I keep my brain active & I teach exercise classes on zoom .
Once those headaches subside you will be on easy street with lymph node shrinkage & labs normalizing. Just keep your fluids at 1 gal per day & just rest as your body dictates. Again your immune system is even more compromised on treatment so do your due diligence. I personally do not promote vaccines although most Oncologist do & many on this site do, just protect yourself!
Also take the best care of yourself with a clean non processed diet of Wholefoods, foods in its natural state & they are easy to identify because they have no labels lol 😂 We promote Garden of Eden Foods, Fruits, Vegetables, Wholegrains, Nuts & Seeds. Moderate exercise is also good for the bone/joint/muscle pain - just walking is highly recommended. May GOD continue to bless & keep you🙌🏾
Like you, I retired from the fed. As we both know, we have three pensions.
1. Pension (based on years of service and the high three years)
2. Social Security (special supplemental until 62)
3. TSP
And we can also work part-time. Also, we have full health benefits for life!! And when you qualify for Medicare, health insurance converts to supplemental. So, you have more than one insurance. I'd like to work for the LLS.ORG or the CLL Society ( I hold a bachelor's degree in government and legal studies but I've always been interested in the medicinal sciences.)
Wow what a small world after all. Yes but we exited differently, I went out after just 5yrs on Disability, FDR & SSDI. I was lucky to be vested. Somehow working there my health started declining almost immediately. I believe the decline was due to my history of a Grand Father’s unauthorized part of the Tuskegee Experiment, My Mom was given DES to prevent my premature birth after a previous pre-term birth & I worked with Vietnam Vets with Agent Orange. There is a direct link between Agent Orange & CLL Leukemia. In the mixed ICU/SICU/MICU unit we did the majority of the complete care ourselves, so we are exposed to all of their body fluids. And at the Brooklyn VAMC we did all the experimental procedures & surgeries also. I was big on PPE but exposure is unavoidable. It was a wild ride… Some of the strongest people I ever knew worked there. The timing was great, enjoy your retirement!
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