New to this community...

[sgoebel]

Hi, I am new to this community as my husband has just been diagnosed with CLL trisomy 12 in the past week from Mayo, with stage 4 kidney failure since Oct 2016. He just had a CT scan to decide the staging for him. There seems to be a great deal of compassionate and knowledgeable people in this community so I wanted to ask for input as to treatment plans people have gone through. We are not opposed to the integrative/homeopathic plans either, however I am not receiving the success rate and longevity for this disease from any of the clinics, etc I have spoken to. Thank you in advance for any and all advice you may be able to provide.

[rcknow]

I have trisomy 12 as well. Has he been tested for IgHV or NOTCH1 mutation? Both are factors that influence treatment options. Are they thinking of treatment for the CLL?

Best wishes...Richard.

[sgoebel in reply to rcknow]

Thank you. We heard about looking at the Immunoglobulin and are having that done today as well as some others

[sgoebel in reply to rcknow]

Mayo in Jacksonville provided a chemo treatment plan, but the local oncologist wants to watch and wait. However with the CT scan that was done just a few days ago, he may have a mass in his intestine- waiting for the final results/ report. We had been going all natural since January with supplements and off of all medications. He did just return to his thyroid meds as that is indicated from years past. I have been looking into cancer center in Mexico as well. Still researching.

[CLLIreland]

We have recently set up a patient led advocacy group CLL Ireland so if you haven't already you may wish to look up our website clli.ie and link to us through Facebook @CllIre. We recently held our first information day 29 April with 140 attendees and hope to hold another later this year. Whilst we can't offer direct advice there is lots of useful information available (including presentations by Dr. Patrick Thornton and Dr. Tal Munir) on our site which should help guide you.

Best wishes

The CLL Ireland team.

[e-mail]

[sgoebel in reply to CLLIreland]

Thank you. I will check it out.

[virdieblue]

I am also Tri 12 and Notch 1. I have been on Ibrutinib for almost 11 months now, and my bloods and nodes are normal It can be used as a first line treatment in the US. I don't know how to factor in the kidney problem.

You are in a major research center and should get good advice.

Keep in touch!

Virginia

[sgoebel in reply to virdieblue]

Thanks

[Jls123]

It is difficult to get a lot of info on Trisomy 12 as it is not as common as others and is considered a midline level in all the CLLs. My husband was diagnosed 6 years ago with Trisomy 12 and after a year of Watch and Wait started chemo therapy, FCR. His bloods were normal after the first of 6 treatments and continued to be normal for the next 4 years. In April of 2016 his bloods started to creep up once again and after a year plus he started Ibrutinib 3 weeks ago, with no side affects to date and all blood work moving in a positive direction. Of course your husbands state of health concerning his kidneys and his age will have a real influence on the treatment chosen.

[Cllcanada Top Poster CURE Hero in reply to Jls123]

Dr. Sharman discusses T12 and NOTCH1 in some length...

cll-nhl.com/search/label/tr...

[sgoebel in reply to Jls123]

That is good to know, Hoping your husband continues in the positive direction he seems to be moving.

[sgoebel]

I am currently watching the 9 part series on the truth about cancer. We are in the 3rd day now, but it is very interesting as this is our first personal experience with CLL

go.thetruthaboutcancer.com/

Maybe many have seen this or something like it, but it definitely is informative.