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CLL Support Association
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No 11q or 17p deletion

Besides being Trisomy 12 and unmutated I was told by the nurse practitioner in my hematologist office that there is no 11q or 17p deletion so, does that mean I have them? I have been on watch & wait since my diagnosis of CLL in Sept of '07. Does anybody else have this as their status and if so, are you also on watch & wait? The main things that bother Mr are fatigue, shortness of breath and an abdomen that looks like I'm 2-3 months pregnant which I'm thinking is due ti retroperitineal lymphadenopathy and a moderately enlarged spleen....so uncomfortable but RBC'S is hanging in there. I go for my 6th ivig and will get tons of blood work and will see my doctor....couple of typos: bother me not bother Mr and, due to not due ti RBC'S are not is hanging in there.

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Hi ladydi,

I have the same markers and my spleen also made me look ‘a little pregnant’

I started an Ibrutinib/ venetoclax trial a month ago and the doctor could barely feel my spleen at my visit on Tuesday. I was also very tired, had shortness of breath and now have a lot more energy, no problems breathing and feel like I am almost back to my normal self.

Best,

Fell

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Thanks for the good info fell. Glad to hear you are feeling so much better. With this belly thing going on I feel I'm carrying an alien inside - a little humor there!

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Yes, I look 5 mos pregnant at 130 lbs and a slightly enlarged Spleen. It’s so uncomfortable and nothing fits anymore.

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I can relate. I have had to go up a size in underwear and forget wearing jeans...anything tight across my abdomen is uncomfortable...if I go up a size they'll be baggy in the legs.

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The NP's wording sounds like you are only Trisomy 12.

The FISH test has markers like light bulbs and if the deletion is found they appear, if they are absent those markers are dark/missing. 17p and 11q deletions are unfavorable and usually resistant to Chemo. So not having those markers is a good sign.

Being Tri 12 UnMutated means that Chemo would likely treat your nodes and spleen but have a short remission.

Talk to your CLL expert doctor about your fatigue, shortness of breath and discomfort they can be adequate reasons to start treatment. The modern Non Chemo treatments like Ibrutinib, Idelalisib and Venetoclax should reduce your symptoms, shrink your nodes and spleen promptly.

Len

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Thanks Len..so I guess when the NP said no 11q and no 17p deletion then I do have them. As far as those drugs you mentioned and, if I have to go that route my hope is that it wouldn't cause a-fib as I already have episodes of a racy heart. Hmmm? So, I wonder why my hematologist says I'm an intermediate risk unless it's because I'm unmutated. I will have to add these questions to the list I have started for my April 9th visit....

Best regards,

Dianne

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No 11q and no 17p deletion would mean that your CLL has normal 11q and 17p chromosomes, a good result. Your unmutated plus Trisomy 12 status is what puts you at intermediate risk: patientpower.info/fish-test...

Neil

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Thanks for the info Neil...much appreciated

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If you have no 11q or 17p deletion it means you do NOT have these mutations....lucky you....my husband has 11q and his chemo did not work...:(

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I disagree, when they say no 11q and no 17p it means you do NOT have those high risk deletions among your cancer cells.

As I said originally, your CLL cancer cells that are making cancerous clones, likely have only Trisomy 12 defects, which is far more common than having a mixture of different clones with different genetics. Please ask your CLL expert to confirm that interpretation of Trisomy 12 only.

Trisomy 12 is often listed as intermediate risk. UnMutated may make it more risky since it often means shorter time between treatments.

See this 2011 Yale study and look for table #2

discoverymedicine.com/Terri...

As far as I have read the A-fib is only associated with Ibrutinib not with Venetoclax or Idelalisib. And even with Ibrutinib, some patients are successfully treated to control the a-fib. That would be a discussion between your cardiologist and your CLL expert- not something that you should try to decide in advance without medical expert advice.

Len

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I just looked at table 2 which was a little confusing and the fact that I'm CD38 + and ZAP-70+ makes me a little nervous

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Percentages matter.. both those surrogate markers are only 70% accurate and sometimes they are wrong, and disagree with the actual IGHV mutation...

Part of the wacky world of CLL 🤪

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They are surrogates for UnMutated- but you know that you are UnMutated already, IMO- UnMutated is UnMutated and 3 tests saying so does not change that or make it worse.

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I just looked at the same thing and it made me a bit anxious too. I am also ZAP70 and CD38+.

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I hear ya DebKat999 How long ago were you diagnosed? Are you on W&W?

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LadyDi yes W&W, but I was only very recently diagnosed this past November.

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No 11q or 17p deletion means you don't have those deletions at detectable levels, which is generally very good news.

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Thanks ever so much Dr. Koffman. I'm a little confused about mutated/unmutated (I'm the latter)...guess I'll have to research it. Hope you are doing well this first day after CAR-T....will continue to keep you and our fellow cll-ers in my thoughts and prayers.

Best Regards,

Dianne

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Http://www.CLLTopics.org has the best explanation I have found about all of this. Chaya, who ran the site, has a gift for making the complicated understandable. Check, especially, the article Three Important Blood Tests. There is a lot of other good basic information on the site. Ignore information about treatment. The site is not currently active, so that will all be old news.

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I'm also Trisomy 12, unmutated.

The terms can be confusing because it sounds like unmutated is good because mutations are bad, right? Well in this context the mutation is desired and has to do with how the lymphocyte cells mature and if they can produce a certain type of protein used by the immune system called an immunoglobulin. In THIS context, mutated is good, because the cells can make the immunoglobulin, and unmutated is bad.

I think I have this correct, somebody can correct me if I'm mixed up too! I read this to try to understand it:

patientpower.info/fish-test...

What I have learned to appreciate even more since joining this club is how incredibly complex our bodies are and there is often no way to simplify how they work!

Trisomy 12 describes the genetic defect which is causing our CLL. As I understand it, there are 4 main possible genetic defects behind CLL, the others are called 11q, 13q, and 17q. Some of us have more than one. Using what is known about our particular genetic defect gives the doctor some idea of what to expect as far as disease progression.

JAG

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Actually they are 5 FISH.... 13q, T12, Normal, (no FISH), 11q and 17p.

FISH Normal, like I have, is a grab bag of generic abnormalties...

There are many other genes involved in CLL... and more being found on a regular basis.

NOTCH1, TP53, SF3B1, MYC, BIRC3

ncbi.nlm.nih.gov/pmc/articl...

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Thanks...not sure what they all mean though...more stuff to look up I guess.....little worried about being CD 38 + and ZAP -70+ although a reknown doctor in NYC said numbers don't necessarily mean much given the indolent nature of my disease

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FISH are locations.. like a mail box in an apartment lobby, its what is in the box that matters... these are the genes which are damaged...

The exception is Trisomy 12. it is a parcel mailbox...

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That is the key- all these prognostic markers are vague indicators, and specific patient's experience trumps them all. If your disease has been indolent, be happy, you are on the good side of all these statistics and averages don't apply to you. Trust that renown doctor in NYC ( ?Furman? or ?Lamanna?) and let that doctor give you information. Ignore the deletions and mutations, the statistics may not apply to you.

A fellow patient of Dr. Furman was diagnosed about the same time as I was (10 years ago) he is 17p and never needed treatment until last year. In the same time frame I have had 6 rounds of treatment with 4 different drugs. But I am Trisomy 12, and he is 17p so the statistics say that I should go much longer than him, before needing treatment.

This reminds me of a saying "Lies, dammed lies and statistics" en.wikipedia.org/wiki/Lies,...

Len

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Hi Lankisterguy.....Yes Dr Furman at Weil Cornell Medical Presbyterian Hospital. Since I live in Florida he recommended Dr Pinilla at Moffit in Tampa Bay, FL

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I just went to Dr. Pinilla @ Moffitt on 15th! Great staff. Going back in 4 weeks to get all the final info. I was disappointed that everything wasn't done in one visit. Glad I didn't have to fly there! 3.5 hour drive for me. Some blood work takes a little longer for results. Unfortunately after 11 years, they are talking about treatment. I am so disappointed since I feel great. Chemo or pills will change that. Frustrating to feel wonderful and have to start treatment. Hope you are able to get to Moffitt!

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I have been Dr Panilla ' s patient since this past Oct. I see him this April 9th and have a boat load of questions which I will post the answers here. Are you in FL? You mentioned a 3 1/2 hour drive. I'm in west central FL and depending on time of day/traffic I have about 1 to 1 1/2 hour drive

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I live 20 min north of West Palm Beach! Do you have a local oncologist or is Moffitt your only? My local is few blocks from me.

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Moffitt is my only. ivig is to boost my IGg and Moffitt is my only place I go to see Dr Panilla for bloodwork and that's where I get the monthly iGg infusions. It's to boost my immunity as I have had sinusitis and bronchitis since last Oct 1st. A CT scan of my sinuses shows chronically infected maxillary sinuses and I have been dealing with horrible allergies for years but I'm hesitant due to getting a post op infection like MRSA which you can't get rid of

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What is ivig? You mentioned 6th ivig.

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GM, this explanation is courtesy of Cllcanada in an earlier post;

‘It is a purified blood product collected from 2000 or more people that boosts immunoglobulin G an antibody. CLL can depleat these antibodies, which causes repeated bacterial infections. The interavenous IgG infusion every 3 to 4 weeks increases these antibodies in the patients blood, helping to ward off some types of infection. It does nothing to treat the actual CLL.’

Newdawn

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So if you have an infection, some docs recommend this? Thanx for quick response!

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They’d only recommend it with recurring infections GM and when your IgG drops to a certain level. It’s a very expensive procedure and sometimes people have side effects. Unfortunately, when our other main immunoglobulins IgA and IgM drop very low, it’s not possible to give infusions to boost those. However, it’s sometimes suggested intravenous immunoglobulin therapy for the IgG compensates to some extent. This is very helpful in explaining;

cllsociety.org/2016/12/immu...

Newdawn

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I am trisomy 12 not mutated, diagnosed in2005, Chemotherapy few times on Imbruvica for 3 years and 3 months doing well. Trisomy 12 is the best from possible. Stay healthy.Stasia

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Thanks...u 2 SZUR....do you have any of those deletions talked about on here i.e. 11q, 13q and 17p?

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none only Trisomy 12

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Dr said if you have chemo first and then go on pills...the pills won't be as effective. Did you find that to be in your case or not?

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Ladydi have you tried acupuncture for your sinus situation? I have gone for 15 years. Has helped me in so many ways thru so many illnesses and annoyances. Keeps my immune system the strongest I can get it to. Will be put to major use during my treatments for side effects. Just a thought....

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Hi GMa27....I went to an acupuncturist 10 years ago but only once...something to think about for sure...thanks

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