My Gp estimates I have 5 years. I am 77 and should not complain if that is all I have. I wonder how many of our lists have the C53 with 17p deletion and how they are doing? is there hope?
I am in panic mode today but will be better tomorrow. I can hardly wait until I get to the specialist to hear what he has to say and if there are any treatments or hope....I have been told I have had this for 4 years now and I have remained stable for almost 2 years...but what lies ahead of me.
chicken little here....
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DianeSH
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I have had for at least 6 years ( could be longer ) does your GP double up as an Actuary . Please don’t panic and wait to see what your consultant has to say.
my GP is a genius and I swear he must devour his medical journals when they come as if they were play boy magazines...this guys knows something about everything!!! I will not be going back to my prior oncologist but am hoping to find one near by that Rochester can work with. Have you had treatment during your 6 years? Thanks for the pep talk...maybe I can stop thinking finitely and think indefinitely.....I am making changes in my life so that I can relieve some pressure and do the things I want to.....thank you again for your note
I was diagnosed in 2007 and treatment with Chlorambucil, which in hindsight may be where the bad numbers originated from. Fine until 2018 until various issues and then started on Ibrutinib. Stopped at Christmas because of an incident of Afib. To date feeling fine so please don’t worry about the numbers. 🤞
I am probably not the best person to answer since I am 40 years younger than you. But, I think about it sometimes since my parents are a few years younger than you.
I wouldn’t believe an exact number someone gives you. But, at 77 I think you are at an age you should devote some mental energy into how to cope with the anxiety that life could end in the not too distant future. Be it religion or meditation or a creative outlet that brings you peace. I think it boils down to the person. I don’t believe in religion so I am still figuring out how to approach thinking about death. I’m am perfect at procrastinating so maybe my anxiety outlet will be indifference via deferral.
I think most of us will not die of CLL but from some other medical issue or an infection. If you are one of the lucky people with a family history of people living to 100 then it could be possible the CLL will get ya. But, looking at most people who make it that far I think it is worth questioning if you would want to anyways. All our friends will have passed on by then.
My wife was diagnosed with CLL in 2015 with 17 P and TP 53. At the time there was little info on the new treatment effectiveness of Imbruvica for her type CLL. She was told she had about 2 years to live.
Here we are 9+ years later and know that Imbruvica, Venetoclax, Acalabrutinib and a host of others have changed the out look of patients with 17P and TP 53. My wife has been on several of the new oral pills and has had good remissions each time. They all worked for her, but she changed pill types due to toxic effects.
Presently we are told by CLL specialists she will probably die with CLL and not from Cll as the new novel agents work well with 80% of CLL patients. Like diabetes, CLL is treatable if not curable at this time.
that is what i wanted to hear..surfing the web yesterday (a very bad thing to do) it sounded like there was no hope......you have helped immensely and maybe now I can get out of this mood and on with life....thank you so much
Hi. When surfing the internet, always check the date the article was publish. Treatment and prognosis have been transformed over the past five years. Stick to this web site. 😊👍
Yes, check not only the date of publication but, especially for retrospective studies, the period to which the database relates. You may have to dig into appendices to find out what treatments were being given, and the further back in time you look the fuzzier the data tend to get.
Unless your GP has more knowledge about your current co-morbidities, I'd take it with a grain of salt.
Although, it is not bad to have a doctor who doesn't push the 'always present hope' attitude. To me, it's patronizing if on the face of it someone is carrying 2-4 age related biggies and gets a diagnosis on top of that to say anything but what they can in good faith estimate.
we have folks on this sight diagnosed with 17p and TP53 after 15+ years of treatment.
Modern targeted therapy has changed the face of this disease. It is good to have faith in your GP however, a specialist in CLL, which is often affiliated with a large medical center blood oncology service is the person to trust when it comes to treatment advice and prognostications.
Google is a poor source for current treatment advice, sadly. Continue to direct question here and read the links provided by administrator's relevant to your situation.
Dx’d 13 years ago when I was 32; aggressive p53 disease. 7 on Ibrutinib, 6 on Venetoclax now. Probably looking for a new therapy this year. The companies seem to be putting out new therapies just when I begin to develop resistance so I’m looking at Pirtobrutinib, BITE, Sorontoclax and BTK degrader.
why would your GP put a number on how long you have? Was that based on the fact that you have 17p? With the new medication today and even with 17p allot of people do really well for a very long time. A cll specialist is who you need to talk to. They understand cll better then any other doctor.
I doubt your GP is up to date with CLL survival statistics with the new targeted therapies. A Leukaemia Foundation of Australia survey found that GPs in my country, saw an average of around 6 lymphoma cases in their entire career! Given CLL/SLL is the most common adult lymphoma, perhaps 2 or 3 of those cases might be CLL, but even if your GP had recent experience with a 17p del CLL patient and decided to check the survival statistics on line, as many here will attest, the stats you find via internet searches are usually not up to date. You need to look at study report results dated within the last 5 years. For combination targeted therapies, the 5 year survival stats are just becoming available, because it was just over 5 years ago that clinical trials of combination targeted therapies started. We've reported on a few recently. There's a massive difference in survival statistics between targeted and the older chemoimmunotherapy treatments. The latter didn't work at all well, because they relied on a functional TP53 gene found on the 17p arm to work and destroy chemo affected CLL cells by initiating apoptosis. Targeted therapies trigger other apoptosis pathways, not reliant on functional TP53.
Hello Diane, your post is a good example of why it is so important that we all find the best cll specialist that our location and resources allow us to see.
There are over 100 cancers we can get, and each type of cancer we might get can have dozens of layers of complexity, as it is with cll. Many very qualified general oncologists are not nearly up to date on current Cll treatment protocols. How can any human stay up to date with 100 cancers. Cancer therapy developments across the board are exploding, in a good way, for so many cancers, now that the human genome has been mapped. A brain cancer doctor probably has trouble keeping up with all the new brain cancer therapies, how can he be current on 99 other cancers.
This is just my opinion, and I am no expert, and I am sure your gp knows 1000 times more about medicine than I do. That said, however well intentioned he is, It seems really poor judgment on his part if he is giving you a 5 yr life expectancy solely based on a 17p Cll diagnosis You might not even need treatment for five years. Once you do need treatment, the oral pill ibrutinib alone will, on average, give you 6 or more years before your cll progresses.
80 % of people with treatment naive Cll patients are alive six years after starting ibrutinib! (See link below). And yet he is giving you five years when you are stable and haven’t even treated yet?
I dont feel qualified to second guess your GP, and maybe he has more facts than you have said. And I am no expert. But from all I have read over the last seven years, it is decidedly not true that someone with a 17p deletion at diagnosis has a 5 year life expectancy. I dont think most Cll doctors even speculate on life expectancy. Good luck to you.
I suspect your GP is over-confident (as many GPs often seem to be in areas they have no particular expertise). I am 17p deleted. I was diagnosed in July 2013 and I've ridden the wave of targeted therapies. I'm still here! (Now aged 70.)
Good to see you're carrying on Graham /fellow Kiwi. I remember my ACOR CLL group days (1990's) with Granny Barb et al. when there were 3 buckets described- if you fell into the third with 17p you were practically doomed. How times have changed !I've just successfully come through 6 days hospitalised having finally contracted COVID 19 - IV Remdesivir treatment- reaction was a purple and brown blotchy rash all over my face and arms (vaso-occlusive lesions) and some deafness but still going strong and back now on 280mg Ibrutinib.
Gee, sorry to hear Covid knocked you about but glad to hear you're back on you feet! Even when I was diagnosed in 2014 with 17p, it was seen pretty much as a death sentence, — particularly in backwards NZ. Venetoclax was still just a lab number (ABT-199) as was Zanubrutinib (BGB-3111) .
You are in shock, and with that diagnosis I would be too, in fact I was in a similar place last year when diagnosed with heart failure and told by a nurse practitioner that there was nothing that they could do for me except to make me as comfortable as possible! I then went to see a specialist cardiac nurse and everything changed. Apparently he had no right in telling me this and there was indeed things that could be done and, it was mild heart failure. So, meds adjusted etc., and life goes on, I am not going anywhere and neither are you! The best way of dealing with this, for me anyway, is 'attack' so go see the specialist, he who is trained for this and ask your questions, take a notebook with you so that it reminds you of what you want to know. As they say in the film 'nobody puts baby in the corner'........big knickers on!!!!!!
you need to see a CLL specialist first of all a Hematologist/oncologist who understands the disease the best. A GP has little knowledge of CLL and I question why he/she would offer advice about a disease that most don’t die from? You will be more prone to die of an infection so take care of yourself. It’s not an easy disease all of the time but it’s better than many others. Self advocate and know that most of us here are planning to live longer and have been living longer than what’s reported on the internet even. Learn more and see a specialist. We are a group here who understands and will be on your side!
Dear Diane, I sympathize deeply with your reaction, as I had similar thoughts and feelings when I got my CLL diagnosis three and a half years ago, at age 72. Like you, I have 17p deletion, mixed in with other good and bad markers, and was told that in 3 years time I was very likely (if not certain) to need treatment. But I have learned from reading articles, reading the stories of many CLL patients on this and other sites, and conversations with my own physicians as well as in many CLL-education events, that there's no way to predict the rate of progression. In my own lucky case, all blood-count numbers have "progressed" ie gotten worse in a gradual and non-linear way (sometimes alternating positive and negative changes), and I'm still barely suffering any symptoms, just 1 or 2 slightly enlarged lymph nodes.
I think this disease can guide us into a path of fatalism mixed with optimism and gratitude. I hope and trust that your present anxiety will melt away into feelings of hope and faith. In truth, as others have been writing you, there are so many therapeutic options now that CLL is exactly what it's labeled: "chronic", ie a condition with which one can and does live well/joyfully.
Does your gp have a crystal ball? Is he a specialist in CLL? No one can predict the future. Many of us have had CLL for years and will probably live well into old age. It’s upsetting to hear this from someone who does not specialise in CLL. Please see a specialist. I wish you well. Hazel
You will live your full life and won’t die from CLL. I am sure. There are very effective treatments available with which you can manage CLL. Don’t panic - exercise (long walks), eat healthy (fruits, vegetables, whole wheats), cut down/better eliminate processed foods and eliminate Soda and limit alcohol. Trust me you will be fine and can be treated with medicines when needed
DianeSH, CLL/SLL is a progressive/remitting form of cancer. I was found to have this at age 61, I am now 70. I have had a struggle as you have now with facing my mortality. Please don't feel alone with this, because you are not. First things first. After talking with an Oncologists who has experience with treating CLL/SLL you will be in a much better place as knowledge is power. There are many tiers of treatment with new ones being developed to replace older ones all the time. As someone that has had 3 relapses, there has been another line of defense ready to try. Many of us on this forum will tell you that not all experiences are the same. No one on this forum will be anything but helpful and try to give hope when you feel there is none. I personally have found some positives have come to me as I fight this damn stuff. I know I have become a better person a kinder person as I see the world differently than before. You really have two choices to make as you begin your fight. Become bitter at how unfair this is or become the person you have always wanted to be for however long you may have. I chose the latter. I take great pleasure in very simple things that I overlooked before. A sunrise and sunset as it meant I lived another day to make a positive impact on those around me. Tell someone how much they mean to you, allow someone to lift you up. Allowing someone to help you can actually brighten their day. Best of luck to you on your journey.
Diane, you obviously have a high regard for your GP. but perhaps he needs reminding that statistics are backward looking and don't either account for change or apply at the individual level.
You could also add that you intend to prove him wrong, which I expect you will.
DianeSH, what a fabulous choice you made to message this forum! I'm 75, entering my 5th year from diagnosis,(13q14), still in W&W and absolutely check in with these friends around the world who share up to date info. CLL research never slows down. It is amazing! My GP did detect, through my annual bloodwork, that leukemia was a possibility. I am so grateful he was "on the ball" with that. But, there is no way I can trust him to treat me. I see a hematologist/oncologist currently and will move on to a CLL specialist as I might need treatment someday. Please always message us here with all of your questions and worries. This is a very caring and informative group of friends who openly share their experiences. The best of life's enjoyments to you. You are not alone! 😊Sandra
TP53mut/del(17p) with unmutated IgHV the one thing that you can be sure of and need to be prepared for is you will go though about twice as many treatments as other CLL patients and will need to take part in clinical trials.
Dr Koffman is at 19 years and 7 lines of treatment, 3 clinical trials. He got about half of that, 5 years each from Ibrutinib and CAR-T. Also he may have got to 20 years on 6 lines but has chosen to treat at early detection of relapse and not wait.
Sorry I have to disagree with you. I was diagnosed in 2007 and initially treated with Chlorambucil. In remission until 2018 when I started Ibrutinib and stopped in January because of an incident of Afib. So 17 years and 2 lines of treatment. There are no set rules for CLL
Or 11 month median PFS and 58.5 month median overall survival from CLL11 trial. This was the end of Chlorambucil monotherapy as Chlorambucil + CD20 monoclonal antibody had a far superior overall survival.
I am the same age as you and was diagnosed almost 10 years ago with the same chromosomal abnormalities as you. I was given 1-2 years to live at that time by an insensitive hematologist. Luckily she referred me to a wonderful cll specialist who told me on the first visit that I would likely die with CLL rather than from it.
My life with cll has been mostly uneventful with almost 7 years of watch and wait, a nasty infection, still no symptoms and 3+ years of daily meds ( Acalabrutinib)
Sure, it’s been stressful and scary at times but so is life. So, get yourself a consultation with a good cll specialist and try to stop worrying.
Time to find a CLL Expert and the newer treatments out there. My hubby is TP53 muted and 17p depleted and his CLL Exoert specifically said on the first day we met him "you will not die of CLL and there will be a cure in your lifetime"- he was 65 at the time- he's 68 now living a life golfing. Please see a CLL specialist and please take out your sneakers or bike or dance (whatever what makes you happy) and know there is hope and new medicine out there. You will be in my prayers
I was diagnosed 2016 with p 17 n tp 53. I'm on Imbruvica 6 1/2 yrs. My numbers are good. I found searching the web was scary. You've come to the right place for information. Best wishes Cindi
Diagnosed 17 P and TP 53 deletion in 2015. Doctors also gave me 5 years to live so I started on Imbruvica (it was a new drug back then) and here I am. I just turned 67 - and feel fantastic. There are a lot of options for treatment now so live your life and as they say, "Don't worry, be happy".
i hear you, and so glad you posted. Reading all of the replies is helping me too! I’m 63, was diagnosed in Jan 2024, started treatment in Feb 2024 on Obin infusions & Venetoclax pills. Doing ok, just having a hard time mentally at times, which is certainly to be expected. Sending love and good thoughts to you and everyone with this disease!
Your GP is not a specialist and it sounds like he is out of date. Was diagnosed at 47 and I'm still here 8.5 years later and I just stood on my feet for two straight days at a trade show so I feel fine. I'm sure I had it beforehand, too. What probably lies ahead is taking a pill or two that will give you the first 4-5 and you will also feel better. Then that will stop working and they will give you something else.
We have all been there. I moped around for a month after my CLL diagnosis and then again after I read that I had the 17p deletion. I have a lot of other complexities and I am headed for my 6th treatment (all pills except for one combo trial that had an IV infusion) but by the time you are where I am there will be even more options.
Honestly, since you are 77, I think when you asked how long you might live, the doc looked at current life expectancies in the US for all women. I don't think his answer had anything to do with cancer stats.
Life expectancy for all people if you hit 65 this year in the US is to add about 17 years if male (82) and 19 years if female (84). But most folks don't look at that number and look at general life expectancy, which in the US is 77.5 years this year, which breaks down to 74 for men and 80 for women.
So, if the question was "how long will I live now" - I think this is why the doc gave the answer he did. He just did stats, which we all know with CLL, don't ever really tell the true story, but are just predictions, and not certainties.
So, take the statistics knowledge and put it in your back pocket, and move forward. You can't age backwards, so you might as well live fully forward.
To sum up .... your GP may be excellent in some areas, however when it comes to CLL that person resides in the stone age.
I am only a couple of years behind you in age.
My first CLL specialist was a poor fit for me and after our first meeting I requested a change and connected with an excellent one.
I was dx'd back in 2015 and underwent about 14 mos of a fixed duration O & V, treatment, 2019 - 2020, that so far has been quite durable.
Thankfully there were minimal sidefx during treatment. And xcpt for immediate family I kept my CLL dx and treatment private.
These daze I hardly think about CLL.
I go in for routine blood labs every four months. And in the words of my CLL doctor: If CLL shows it's ugly head again, we'll burn that bridge when we come to it.
Wishing you a smooth ride and good fortune on this journey you never asked to take.
. . . . . and, as you might have figured out by now, you cldnt be in a better forum to gain knowledge and support about CLL.
Diagnosed in 2015 at age 76. Also had TP 53 and 17p deletion. That was 9 1/2 years ago. I am on my third treatment which is working without appreciable side effects. Look forward to a long and productive, happy life!
Please see a CLL specialist! I was diagnosed in 2009 with high-risk leukemia, which is what you have. I was in a clinical trial with ibrutinib and was declared in clinical complete remission for 12 years. I am now successfully on my treatment of venetoclax and obinutuzimab. I am 72. Get busy living instead of getting busy dying. See a CLL specialist!
Hi Diane. I’m 76 as well. I was diagnosed about two years ago. I’m feeling fine and although I was very upset about the diagnosis initially, I’ve come to think of it as something I will deal with as things progress. I have an excellent Doctor who specializes in CLL. The most important message I got from the CLL community was to find a specialist in CLL, not just a general hematologist, who works in many areas. I now see Dr. Leslie at Hackensack Medical Center. Are there any CLL specialists in your area? I did read that people who see CLL specialist live 2 to 3 years longer than people who see a general oncological hematologist.
Personally, I would find a new GP. You are a cancer survivor according to your profile so you know how to fight the fight. You are also seeing an oncologist. Why are you even listening to your GP in regards to CLL ? Stick with the specialists.
Perhaps your current post is just trying to get a feel for how many 17p and TP53 folks are here and what their experience has been. That is good since getting the diagnosis of 17p and TP53 can be scary. There is so much hope for treatment than ever before and more in the pipeline!
Take care and keep with the good doctors at the Rochester Cancer Center.
Diane…..I can certainly relate to what you are experiencing, having been diagnosed almost 4 years ago at 74 with high risk disease and all unfavorable markers. I had 4 months without treatment; since then, I have been treated with Acalabrutinib and Venetoclax, both of which worked for awhile before I developed resistance to the drugs. I am currently on Pirtobrutinib and soon to start Obinutuzumab which are hopefully expected to work for a year or so. After that, who knows? I’m just trying to be optimistic that some of the drugs which are currently in trials will work for me then.
The strange part of having this disease at my age (78) is that although realistically I know that I have already lived a full and wonderful life, I feel much too young to die. I, like you, have worried about all the things I need to do before that happens and have only recently come around to realizing and believing that the only really important thing is to enjoy the time I have left with the people I love the most. It’s amazing that even at my age, you think you will live forever ( although, really, who would want to?) and it takes a major adjustment in thinking to accept the opposite. All this is to say, enjoy every day, love the people in your life and try not to worry about what is to come. And know you always will have the support and understanding of the people on this site. Best of luck to you on your CLL journey.
Your GP's estimate is just that an "estimate". I am 76, soon to turn 77 and have very aggressive CLL for going on 8 years. There are so many new CLL treatments coming on board that IF or WHEN you need treatment your biggest concern will be time of remission. 50% of the CLL patients expire from something besides CLL. The number of CLL patients in US is growing every year because treatments are greatly extending survival years. Blessings.
Maybe he's thinking 5 years if you do nothing. Even then, I'm not so sure that it's an accurate survival statistic. Possibly your previous cancers shave some survival time, but even then, comorbidity analysis is in its infancy. If he's into journals, demand that he cite sources.
Look at how long close relatives have lived and what they died from. Look both ways when crossing the street.
I don’t believe physicians should tell patients how long we have to live until we ask. So far two of my Oncologist have told me when I was diagnosed. One said 10 years and he and wouldn’t treat me, the other said he wouldn’t treat me. I’m 70 and have a lot of life left, so I’m on to my 3rd Oncologist and she’s a female. Find a Hematologist Oncologist. My cancer is stable but I know it can jump and take off. Oh, I have 5 years left.
Stay positive and live your life the best you can. Rest when you need to and go when you want and can. My CLL/SLL is stable, but I’ve developed tycardia and sjogrens so far and my exhaustion is merciless. Bless you!
I am amazed that so many of you took the time to write such supportive and understanding and encouraging posts. I have definitely changed my attitude and mind since reading all your posts. Yes, I beat cancer twice and I was in the minority on one of them but hey, someone has to be the minority and beat it, why not me? And from the first I fought it and I won. Of course, removing sick body parts is a whole lot different than CLL which is in a world of its own. Any blood cancer is in a world of its own. Too bad we can't find the bone marrow that started this and remove it before it spreads but I realize it is all or most bone marrow.... Anyway, I am seeing an expert specialist next month, Dr Denz in Rochester at the Wilmot cancer center. I know a few people on this list that also see him and so far, I have total faith in him. I doubt if I will be going back to my oncologist though I have been with him for 11 years. He has really dropped the ball with this one and his communication sucks and I think he himself is afraid of dealing with me and this thing and is in over his head. There are a few local oncologists that deal with CLL and one comes highly recommended. I cannot make the 3-hour trip to Rochester several times a year but now I hear they can do video chats. At any rate, I am changing my mind, forgetting my self-imposed limit and getting on with life. I still don't like the fatigue and the daily required naps but hey, they give me the energy to keep going.
So please know, I have heard each and every one of you and your support and pick-me-ups. I am thankful for the survivors who have shared their stories with me. Please believe I intend to fight this, deal with it and see the best specialist there is.
last question. how bad are the side effects? I don't hear anyone complaining about the meds they are on and only hear a few complications. I hear people saying they felt better after starting treatment, I know I am asking too much to sail through the treatments and the meds but is it possible? I should not complain, anything that lets me live longer should be good. Thankfully I come from a family of long-lifers with my dad dying at 91 and only being sick a short time before. I am hoping this good Dutch blood in me does the trick. I am more ready than ever to get to Rochester and have stopped the planning of clearing things out and getting ready.... though at my age I think it is something we all need to think about and start doing. I will be doing it all but at a slower, less intense rate. I still have my knitting business but will not take any orders but instead will make what I want to make and even finally get some things done for my family and enjoy my freedom and my life.
I am sorry, I meant this to be a short note with a lot of gratitude and admiration for each of you and a giant bucket of thanks.... This group, all of you, are the best and have helped me immensely to turn a corner from a dark alley to sunshine and happiness and a good life...Hugs to all of you. I can't thank you enough. I have gotten much much more support from this group than I have from my own family and friends...so on with life!!!
Thank you all for your kindness..I am still a bit apprehensive about my future and the possible treatments but i can only take one day at a time....that is how i got this far....
Live for today! Enjoy every day even if just to sit and appreciate the beauty of a garden or the feel of the sun on your skin and the wind on your hair! Easier said than done, I know, but looking back I was a 17 deleted tp53 etc patient first diagnosed in 2017 and spent 3 years scared and mourning about my impending death (google said i had 3 years). I can't get those 3 years back, and looking forward, I don't mourn my death anymore. I try to enjoy every single living day from this point forward, its a better way to spend my time.
Diane, if your GP is as well read as you say, it needs explaining why he would put any figure on your life expectancy, based on your having CLL with TP53 and 17p mutations. As others have noted, targeted (non chemo) treatments have dramatically improved the prognosis for patients with those genetic markers.
While clinical trials for some of the newer first-line treatments have yielded five-year results in terms of progression-free survival and overall survival statistics, when you read an account of a trial in a journal, there's no reason to believe that you will necessarily fit the same curve as the patients in the trial. They are a small sample of a highly disparate population; you are an even smaller sample. The 17p/ TP53 deletions are not in all studies a negative prognostic marker.
For other first-line treatments, including some combinations of second generation drugs yet to be given FDA approval, we don't yet have a good measure of the durability of patients' response to treatment. And there are several promising second-line treatments coming onstream to cover relapse due to drug resistant mutations. For example, beyond covalent BTK inhibitors we have non-covalent BTK inhibitors, and then BTK degraders. Not to mention combination treatments with BCL2 inhibitors or CD20 antibodies, or triplet combinations. With all this available and in development, to attribute an OS to an individual, early stage CLL patient is unfounded and unhelpful.
Out of interest, how has your absolute lymphocyte count (ALC) been varying since diagnosis? Give numbers if possible.
hello - I write by way of encouragement - I was diagnosed with CLL 2015 - by 2018 I was very unwell and 2019 saw me with 90% infiltration in bone marrow and a diagnosis of P17 deletion and TP53- treated with bTK inhibitors-,
GPS - even the very best of them - do not know a lot about the complexities of Blood cancer and I’m surprised yours gave you a time frame -
Now heres the thing —-
Researchers are amazingly brilliant and there are treatments available and even with deletions you can live for many years -
I’ve had ups and downs with treatments and side effects - have other illnesses - and I’m still alive - and not giving up.
Let’s prove your GP very wrong -
Take each day - surround yourself with positive people, accept a new normal and find your team of experts.
You can do this - It’s been 9years and turning 75 in August.
Thank you my dear...I have some good plans in the works for me and stopped thinking of any time lines or limits. This group has helped me immensely....how do i hug you all?
Don’t be afraid of the treatments, I was. I was so afraid of the treatment for nothing. Here I am taking two pills a day like taking down Tylenol. With no side effects.
First, my point is that no one doctor can have any permission to tell how long we are to live. It all depends on God. So live full live, do value each and every day you have and bless the Lord for such gift. We are all mortal. In this life one can be sure only in 2 things - death and taxes. Also, Mark Twain very well noticed - I am not afraid of death. I was not living billions years before I was born, and won't be living other billions years after I die. Also, when we sleep without dreams it is a small death. Why should we worry? Don't worry be happy. Human beings are mainly worried about uncertainty. So, be certain: you are mortal and will die for sure. When? Does it matter? Just live the current moment. Only this current moment is certain and exists. Make a maximum of that.
Once again the members of our community have shown themselves to be very supportive with expert advice based on personal experiences. I too experienced a very unprofessional comment at my initial diagnosis before seeing a hematologist oncologist. Finding this community support has kept me grounded. You will do well. You can work with a local cancer center for monitoring and only go to the one that is too far for you on an annual basis. You will need a local hematologist oncologist.
thank you for your note of support...I love this group...I get more support here than anywhere else.....My plan is definitely to look for a CLL specialist or hematologist oncologist (which my present oncologist is supposed to be!)..I havent decided to line one up before I go to Rochester or wait until I go and see if there is someone local that he knows that he can work with.....I wish I could go now but there is too much going on with hubby and his health and life in general and they tell me I am stable....so far...at any rate, each day I get a little more prepared for the future and what happens and what it means....My present oncologist is not an option....again, thank you for taking the time to send me a little support and care...This group is the best....
All CLL specialists are hematolgist-oncologists; not all hem-oncs are CLL specialists. Please consider attending a few virtual meetings of your local CLL Society group(s) to see who people in your city/state/area like, what their practice is like, etc. There is also a list Dr. Koffman has built.
There are a number of local hem-oncs who welcome input from CLL specialists, you may not necessarily need to see "only a specialist", depending on how your disease reacts. Some regular hem-oncs become very interested in this rare cancer, read up on it, know what the most current advice is. You may be lucky, have a fairly benign disease/treatment course, and may be totally comfortable with what a local doc is doing. Since you have decided to join here, you will know how what *your* doc is doing, compared to others with similar disease aspects, and what their docs/specialists have to say, and how they treat, various disease aspects, as you read posts/ask questions.
thank you for the advice and help. I am still pondering whether to stay with my oncologist or not. I see Dr Zendt a CLL specialist this thursday and I will hope he finds a way of me working with someone I can trust so that I do not have to go to Rochester (3 hour drive) all the time...I have another dr in mind to work with Dr Zendt but want to see what Dr Zendt has to say first. in my mind he is the boss of me and my CLL and we all follow his advice..
With the new targeted drugs people are living longer and doing better. The old Chemo therapy did not work well for 17P. I am 17P and have had CLL for 8 years. I am now 60 years old,
I was diagnosed in 2007 at age 51,with the exact same diagnosis that you have been given, (C53 mutation with 17p deletion)and 5 years estimated survival, 17 years on,I am as fit as a fiddle. With the advent of new treatments you should be optimistic and remember you could die from a thousand other diseases not related to Cll. I don’t think any Doctor would guarantee you more than 5year increments.
Have no doubt ,your life will need some adjustment, follow the advice of your Doctors/Specialist and I have found some great ideas and advice from this community.
thank you....I am loving my life and retiring a bit from retirement...Does that make sense>? I have/had a lucrative knitting business but I am not taking any more orders and am looking forward to doing just what I want and enjoy my years however long they last. Also by giving u the business it releases me from the pressure and when I have a bad day and just want to sleep all day I can do that....I am 77 and probably should not complain about my form of CLL..many regular people dont live this long...i just dont feel all used up yet...I am just wondering (assuming) what treatment the specialist will start me on . I see Dr Zendt this Thurday. Reality time! and then I have the half hour consulation with the CLL specialist at the end of the month. By the end of month I will have a good idea of how I am and which way I am going.....I fully intend to beat the estimate of my GP of 5 years which would make me 82 and a good time to pass on........but I never did follow the rules ....I come from a family of long livers and intend to be part of them....I had two days of pure sleep or just total brain fog and not doing a thing to today where I am full of ambition. I am still trying to get used to that variance....
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and stopped thinking of any time lines or limits. This group has helped me immensely....how do i hug you all?
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