Newly Diagnosed

My wife was recently diagnosed in Jan 2017 with CLL from routine blood test for a physical. She's 42 and feels fine. At Stage 0. WBC was at 24, can't remember Lymphocyte count

In Feb FISH analysis came back with 17P/P53. Double whammy!

Needless to say it's been a difficult 2 months digesting all this info. Turned our world upside down. This site has been great since the internet Is full of old and misinformation. Been looking so much that we're getting into information overload.

We're hopeful for all the new options in this high risk category.

We're in the NY metro area and going to see Dr Rai in April. Hopefully will have some positive paths for us with this high risk when it's time to treat.

We know they say to treat when symptoms appear, but is that thought changing at all for people with the high risk? Will they start treating earlier on without symptoms?

We know Ibrutinib has been positive. Also Venetoclax.

Is stem cell transplant still possible?

If anyone has new info for 17P/P53 it would be greatly appreciated

19 Replies

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  • Hi dfeld,

    I remember getting my bad news and it changed my life. It's been 2 years since diagnosis and went from WBC 24K to 44K and developed small Lymph nodes throughout. Some people stay at 24K, but realistically I wouldn't count on that.

    As far as getting treatment before symptoms.... The way I understand it is since there is no cure (at this time) and you feel fine without medication, might as well stay off the medication. Delaying first treatment till needed generally gives you the best results (first treatment achieves the best results compared to subsequent treatments.)

    To date there is no evidence that treating with new drugs (not chemo) earlier in the disease when total Lymphocytes are less, gets you to better outcomes than waiting. As soon as that happens I will be in line myself.

    In time your mental distress will lessen and your wife will live with things just fine. She will likely live a good and longer life than you think. My grandmother dies with CLL at 94 never treated. She died of heart condition.

  • No specifics for you. Just wanted to say welcome and as the week progresses you will probably get some answers to your queries. Suggest you try and enjoy stage 0 while you have it. I try and learn continually but live in the meantime. Stage 0 also.

  • Hello dfeld,

    Welcome to both of you to the club no one wants to join. We have a NYC chapter and several of us see Dr. Furman and his colleagues at Weill Cornell Medicine NY Presbyterian, and several see Dr. Nicole Lamanna at Columbia NY Presbyterian.

    Tekusa's response on early treatment is accurate, and even though a WBC of 24k seems high ( Her ALC is likely around 20k ) most of us are between 100k and 500k when symptoms begin and make treatment necessary.

    I suspect that you already know that your wife's 17p/P53 means that Chemo will not be effective, so when she needs treatment Ibrutinib will likely be the first choice and Venetoclax with be the 2nd.

    We have friends in Staten Island, the husband has 17p but went more than 7 years before beginning treatment. He is now on a clinical trial for ACP-196 (Acalabrutinib- the next generation of Ibrutinib) and he is doing great after ~ 18 months.

    Stem cell transplants have some high risks, so usually used only as a last resort for CLL now that we have alternatives. (The rough figures usually say 30% cure, 30% serious graft vs. host disease, 30% transplant failure, and 10% death)

    I hope you can both take a deep breath and learn to live fully, this disease is a marathon, not a sprint, so learning to pace yourselves is very important.

    Len

  • Hi Len. Is it possible to send me info on the Ny chapter. I live outside Philly but travel to Nyc for work regularly. Have met both furman and lamana and looking to see one of them as second opinion when I need treatment so interested to hear experiences. Thank you!

  • Hi MonD,

    I was using hyperbole about a NY Chapter of the club no one wants to join. We are a virtual group communicating online via this group (HU-CLLSA) and two others- cllforum.com and acor.org/listservs/join/39

    Dr. Furman frequently contributes comments on groups.io/g/CLLSLL (how I first met him) and cllsociety.org/about-us/med... in the "Ask the doctor series"

    Dr. Lamanna is a frequent video guest on Patient Power - patientpower.info/bio/nicol...

    As you may already have learned- Dr. Furman avoids Chemo whenever possible, Dr. Lamanna is willing to use it for Mutated 13q & Mutated Tri 12. So if you have a preference, you can start with that difference.

    Len

  • Thanks Lenkeck. We're trying to find that "new normal". We're on LI so trying Dr Rai as a first step

  • Just wanted to say hello. My husband was diagnosed in Aug at age 41. Time helps so much with dealing with all of this. And also getting past the googling stage of all the obsolete information. Once you have all the info and time with it all it will feel more manageable. It felt like such a relief to move to 3 month dr apts vs going every few days and waiting on results. You will have great treatment options when you reach that point but that could be years and years away. Hang in there, you are in great company here!

    Mindy

  • Thanks.

  • Hi dfeld and welcome. I csn relate to your shell shock and remember it well. You've come to a great place to learn more about CLL. Your wife is lucky to have your support, it's a lot to take in.

    Like ap64 I live in the meantime whilst on watch and wait. I don't let it rule my life but try to learn what I can.

    Some very good treatments available and more in the pipeline.

    Peggy

  • Thanks everyone for the kind words

    Just curious about lifestyle changes

    Does eating organic foods help?

    Is it ok to have a couple of drinks?

    When is she more susceptible to infections? When needing treatment or right now?

    Other than increased WBC and ALC numbers are fine

    Can she get on an airplane and go on trips?

    Like I said, still trying to figure it all out

  • Hi Dfeld, Reading this thread you collected some expert advice from folks with far more experienced than myself.

    What I have done is try to stick to one beer or wine (zero if my wife isn't having one) a day. Than you might have fewer pizza's and more veggies / fruit each meal.

    At least that is what I am trying and I haven't been sick at all, since two winters ago when I had caught a cold at work. (Now I retired, which I was planning before diagnosis).

    I wash my hands and use sanitizer, and don't touch hand rails when out in public. Before, I would think if dosen't kill you it will make you stronger.... Not anymore!

    My thinking is (and here is where others might disagree) you might continue your search for information, but collect the prognostic indicators that might forecast time to first treatment). Also get her immunoglobulins checked (IgG, IgM, IgA). They go down over time and that is when a person gets sick most times. This might occur mostly after treatment, but I am not sure. My IgM is below what it should be but others are still in range (although low side). My blood work is all good like your wife except WBC and ALC.

    Last February and April I went on business trips to Quebec and Italy with no problems. Just keep up the good hygiene for hands.

  • Get as health as possible through a 'cook from scratch' diet, so you know what you are eating and daily exercise...

    Most of the questions are covered in this Patient Guide

    nccn.org/patients/guideline...

    17P/P53 is actually a single whammy... 17p deleted indicates a damaged or missing TP53 gene... and it is the gene that matters... not the 17p- deletion. So while not great, it isn't as bad as might think.

  • I, too, am 17p deleted with P53 gone AWOL but I have been fine for 11 years - no treatment and counts are only slightly out of range. This is very rare, especially for us women, but it is possible. We are not textbooks! I get my vaccines and try to eat healthier. Smoothies with fruit and greens start my day. Prayer and faith have helped me.

    I remember so well how I felt in the beginning - diagnosed with an unheard of, incurable cancer and then to be patient and positive while it gets itself together. I had to forget everything I thought I knew about cancer and didn't know where to turn. I felt like I had been launched in a little boat into a lake and told a storm was coming, then to watch and wait for it to hit. The waiting is hard, but for many of us, there is time to educate ourselves and find a community of support. You've come to a good place. Here, oars are handed out to those who want to row.

    Dx 2006 at 61 years

  • Marcyh

    Thank you for your reply. This really gives us great hope 👍

  • Hi MarcyH,

    I was dx 6 mos ago, CLL stage 0 WBC 14, ALC 10. So happy to see you have seen ten years on W&W. I am 60 and waiting on grandchildren. Would love to see 10 healthy years ahead....👍Feeling good so far.

    Could you share your counts at diagnosis and now. ? Lifestyle and diet?

    Trying to be proactive.

    Thanks

    Patti

  • Patti, at dx my WBC was 9.9, lymph count was 4.4. They've been over 12 and 7, respectively. Interestingly, my radiation for breast cancer (according to my hematologist) in 2014 brought my numbers back down into normal range for at least a year. My last labs were 10.6 and 5.7.

    Lifestyle and diet - Thankful to be retired, guarding myself from stress where I can and living each day more intentionally than BC (before cancer). Life AD (after dx) has had ups and downs but I'm quicker to notice and address my needs. Thankfully, I don't have a weight problem and I have never been on a specific diet. We eat a varied diet and focus on eating smarter but not depriving ourselves. I feel blessed and grateful and can honestly say I've found deeper meaning and purpose in life since my diagnosis.

    Sincerely wishing you more than 10 healthy years!

  • I am 17P as well. Was on W&W for a year but my nodes started to get to big. I am on a Imbruvica Venetoclax combo trial.

    It is probably best to wait until treatment is needed.

    In my opinion when you do treatment it best to do a combo of Imbruvica with Venetoclax since 17P people can progress on imbruvica alone sometimes.

    The hope of the new trial is to know it down as much as possible to get off for a while so one does not become resistant to the drugs.

    While waiting study everything closely so you are ready to make a descion when needed,

    Feel free to contact me and I can explain more,

    Best wishes,

    Hoffy

  • Do they know who will do better with Ibrutinib than who will not? Is there a test they do to find out?

    It seems that's the 1st choice all around for 17p.

  • Once on Imbruvica they can look for a certain mutation that can start happening many months ahead of time. I am not sure if they can know ahead of time.

    See this:

    nejm.org/doi/full/10.1056/N...

    This is a great over view of CLL. Since we are treatment Naive ( TN) we do a bit better than refractory patients ( R/R) :

    Watch this:

    Dear CLL streamers,

    We are extending the time for the stream to be available to you through the weekend. We hope this will help everyone have a chance to view it at their convenience. It is recommended that you use either Firefox or Internet Explorer as your browser. (Google Chrome and Safari are presenting playback issues). Thank you for your patience.

    go.osu.edu/TreatmentLandsca...

    Tell me if you have anymore questions,

    Hoffy

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