New SLL diagnosis : Hello all! I am a healthy... - CLL Support

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New SLL diagnosis

Mako625
Mako625

Hello all! I am a healthy 43 y/o male with a very recent diagnosis of SLL via lymph node biopsy. I suspect this has been going on for a few years as I have had a lymph node enlarge on my neck 3 yrs ago that everyone brushed off due to me not having any other symptoms. Axillary lymph node swelling started 5 months ago. Saw local hematologist last week and he ordered bloodwork, FISH and CT scans. Recent ct scans show bulky lymphadenopathy in abdomen. Spleen is at high end of normal size but not classified as spleenomegaly. Largest lymph node is periaortic and measusres 8.5 x 3.5 cm. I work in medical field and had a general surgeon friend look at scan. He said the lymph nodes are not impeding or pressuring on anything.

My follow up was not supposed to be for another 2 weeks but local hematologist called yesterday and moved up my appt saying he needs to start treatment ASAP. I am having no other symptoms except very rare mild night sweats and a feeling of fullness in my abdomen after I eat. I am very healthy and active. He said lab work was fine. FISH testing not back.

I am trying to coordinate seeing a CLL specialist and have reservations about starting treatment until I see someone. I am trying to be seen at Ohio State University cancer center abs should be able to make it there within the next few weeks. I am treatment naive and while I am on board with treatment I’m just not sure what the best approach is. I also don’t want to limit my possibility of joining a clinical trial should the hematologist suggest it. Kind of confused and would be grateful for you opinions.

Thanks in advance

21 Replies
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Mako, I too, was diagnosed like you, but likely a bit earlier on in the progression. I have never been treated, but you are at the right place for solid advice from those who have been. Many have traveled this road long and far and with excellent outcomes. Their comments will be forthcoming in very short order. In the meantime, Be Well - cujoe

I would hold off on treatment until you have seen a CLL/SLL Specialist. I would also ask the specialist to test to see if you are unmutated or mutated, ( if that has not already been done) as that could determine which treatment your specialist would recommend WHEN he or she determines the right time.

I was diagnosed in 2016 and had several enlarged lymph nodes in similar areas that you mention, as well as a high lymphocyte count that continued to climb. My local hemotolist/ oncologist wanted to treat me with FCR as the count climbed, but as I felt fairly good and did not have any of the other symptoms except some fatigue, I declined. As my count continued to climb and the nodes became larger, he mentioned it again so I decided to get a second opinion from a CLL specialist at Moffitt Cancer Center in Florida who came highly recommended by another CLL person I knew.

Although it is over a 4 hour drive for appointments, I do not mind. He ordered further testing including genetic testing, and I was told that I am “unmutated” and that when I need treatment he would recommend immunotherapy and not FCR or other chemotherapy because it would not work very well with my unmutated status.

I have been on “watch and wait” until this month when I began mono therapy with Rituxan to help with the warm body autoimmune hemolytic anemia ( AIHA) which I had developed and was causing some issues because of my dropping hemoglobin level. My specialist also told me that it could help with the CLL. I chose this treatment instead of starting immunotherapy pills for what could be the rest of my life, as I know there are potential side effects to that. I also thought that the shorter 4 week treatment of Rituxan would give me a little time ( I know it is not a long term remission) in the hope that some of the combination therapies currently in trial, might become available to me at some point.

I just had the last of 4 infusions yesterday but will not know how well they have worked on the AIHA or lymphocyte count ( which was at 225,000 before treatment) until I return for blood work in a couple of weeks. What I do know is that after just one treatment I noticed that my lymph nodes that I could feel had decreased after just the first infusion.

I highly recommend seeing a speciast before agreeing to any treatment.

Mako625
Mako625 in reply to Britam

The local hematologist would like to start Ibrutinib. I’m just wanting to explore all my options. My blood counts are completely normal and I feel pretty good. Actually just got back from a hunting trip in the mountains of Arizona in January and wasn’t fatigued with all the hiking. I understand his concern with bulky lymphadenopathy in my abdomen but he doesn’t have the full picture yet. I guess I will see him next week and see what he has to say.

Britam
Britam in reply to Mako625

If I had not chosen the short treatment with Rituxan that I just completed, my other option was Ibrutinib. As I would probably need to take it daily for the rest of my life, I decided to try the Rituxan treatment for the AIHA which was actually the biggest concern because of the dropping hemoglobin. If the Rituxan treatment does not help the AIHA ( and hopefully help the CLL somewhat) then I will probably need to begin Ibrutinib. Althoughs others on this site seem to have few of the possible side effects, there are others that do. Some of the possible side effects are of concern to me, especially the possibility of developing atrial fibrillation as my father has a history of heart problems. I am hoping that the Rituxan gives me a little more time to delay further treatment as I hope some of the immunotherapy combination trials where treatment is for a limited amount of time, rather than “forever” might become more readily available.

Good luck for next week!

Lucho1995
Lucho1995 in reply to Britam

Good luck. I was diagnosed in 2012 with MBL and 1 year later progressed to CLL. My wbc is now 55 but not so sure because been fighting a sinus infection for the last 6 months. Like you I'm unmutated no treatment as of yet stage 0 and no symptoms. I have a hematology and also go to NIH once a year. This Wed I have my annual appointment and I'm a bit anxious.

I suggest you wait until you see the specialist. Our oncologist wanted to put my husband on FCR right away. We saw a specialist and he is still on W&W 4 months later. I don’t understand why your doctor would even consider treatment without test results. Don’t rush this and regret it later.

Mako625
Mako625 in reply to Kokobean

Yeah, I’m not sure either. Flow cytometry shows I’m CD 38+ from lymph node biopsy that was done early this month but literally all other lab work is normal.

Lucho1995
Lucho1995 in reply to Mako625

Please get 2nd opinion before starting treatment. Good luck Mako

Hi Mako. It's great that you can see a CLL specialist at OSU in next few weeks. I would say wait for that meeting before making any treatment decisions. You will get top-notch advice there. Also, go in with questions of your own to get the most info possible out of that meeting. Ask if there are any relevant trials for treatment-naive patients (since youwill only be treatment naive once! haha)

As for the ibrutinib treatment suggested by your own hematologist... That drug has worked very well for my CLL, and with essentially no side effects (but I am on reduced dose). Most people starting ibrutinib report a rapid reduction of node size. So that's good. But as you say - best to hear and evaluate all your options before starting anything.

good luck!

kim

I agree with the others - wait for the test results - they are important for the correct assignment of treatment directions. FISH is a very important test from which some of these decisions are made, and none should be done before the results are in.

One important note - SLL is NOT CLL. Most of the people on here are CLL types and will refer to WBC counts and how they are trending as well as their B type symptoms. Although SLL and CLL are closely related and respond the same to treatment, many SLL types (like me) NEVER have high WBC counts. The lymph nodes are capturing the cells and that is why it never showed up in the bloodwork earlier. We require different monitoring than simple bloodwork to track the disease. Therefore we have more CT scans in our future.

Good luck in your trip down this path. We are all here for you, and those of us with SLL instead of CLL will gladly help you through some of the nuances of the SLL subtype.

You've got this.

I would most definitely see a specialist prior to any treatment

AussieNeil
AussieNeilAdministrator

With CLL/SLL, it is rare that you don't have time to research your optimum treatment choice. From what you share, you are probably nearing the need for treatment (in your case the triggers being a node larger than 10 cm in the largest dimension and a spleen protruding more than 6cm below your ribs. See this post for more information:

healthunlocked.com/cllsuppo...

That you are CD38 positive means that you are likely to be IGHV unmutated. That means that you are likely to have a shorter remission length on chemoimmunotherapy like FCR/BR. Your FISH results may also indicate these treatments are poor choice for you. So Ibrutinib would be a good choice now without waiting for further test results.

In the USA, you have access to targeted therapies not readily available in other countries. In addition OSU is an excellent centre for a second opinion and will provide access to clinical trials with exciting new combination therapies. Some of these are likely to get you into a deep remission after a few years, when you should be able to cease treatment and resume watch and wait. Ibrutinib is most unlikely to get you there in less than five years and you could be on it indefinitely.

Neil

Thanks all for the advice. Will keep you posted. It’s been a whirlwind last couple weeks. Still shook most days from the diagnosis but trying to have more good days than bad. My wife is very concerned and is also very shocked and in disbelief. I really am glad I found this forum!

Cheers

Jemorgen
Jemorgen in reply to Mako625

Hi Mako625 - at risk of prying I’m wondering how all this has progressed for you. Did you end up starting treatment? Please only share within comfort.

Mako625
Mako625 in reply to Jemorgen

I see the specialist tomorrow. Hopefully will know more then

Mako625
Mako625 in reply to Jemorgen

I am going to try to get into a trial close to where I live. 2 arms Ibrutinib/Obinutuzumab/ Venetoclax vs Ibrutinib/Obinutuzumab. Found out I am IGHV mutated, normal FISH but I really don’t want to have chemo. Worried about the secondary cancer risk due to my age. Specialist thinks I should start treatment within the next few months due to lymph node size in abdomen.

Jemorgen
Jemorgen in reply to Mako625

Thanks for the update Mako. I’m sure there are others on this site who can provide more wisdom but please know that I send you many warm thoughts for easy decisions and smooth sailing.

Mako625
Mako625 in reply to Jemorgen

Thank you!

With regard to not having FISH data, Is it fair to ask what was the hematologist's reasoning for starting treatment would be? And why ibrutinib?

Hopeful for you,

JM

Mako625
Mako625 in reply to Smakwater

Thats what I plan on asking when I see him Tuesday.

Good Morning Mako625

I agree with Britam, see CLL Specialist before treatment. I was DX in Sept 2017, started treatment Nov 2018. My doctors have my blood tests back to 2013 which did not show any signs of CLL even up to 6 months before DX. I did not have really bothersome symptoms before treatment. Slightly enlarged lymph nodes, drenching night sweats and some unexplained fever spikes. Just before treatment I started having shortness of breath and dropping RBC. Everything was moving so fast that in another month I would have had to have blood transfusions. I had choice between Ibrutinib and B+R as I am un-mutated and over 65 years old. Your choices come down to going with either the treatment which will give you longest possible remission or least side effects. I choose least side effects and am doing B+R without a lot of problems. Just kicking the can down the road until a better multi-treatment is approved for use. I know it is a hard decision, but you have the greatest knowledge of how you feel.

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