So I recently had two visits at the Mayo Clinic and had genetic testing along with ct scans. I’m “normal” karyotype, unmutated igh, unmutated tp53. I’m being transferred from my hematologist to a Cll specialist and in general…I feel pretty lucky.
One thing my doc said though was that I was likely to die from Cll eventually, due to my age (I’m 36). I pushed back a bit because I’m a baby who demands sunshine and rainbows, and she relented that survival estimates are based on older treatment data. In truth, she might be right, and coming to terms with my own mortality is an unpleasant but necessary step. Apparently we all have to die at some point (boo!).
Anyway this is where I’m at, officially watching and waiting and glad to be moving on to the next phase of living with more knowledge about my current condition. I know it could be worse…and hey things can change quick, but I’m doing ok. Time to live for today yeah?
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Snakejaw
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Sorry but I disagree with your doc. No way to know if the CLL, or complications of it, might be the official cause of death decades from now. At least they acknowledged that the statement was based on older data, before the targeted treatments arose. I was given 3-5 years to live without a bone marrow transplant in 2011; at that time, with few MAB's and no oral targeted treatments available, it was probably true. But lo and behold, a new era of treatment has arisen. IMO it will be at least another decade before mortality statistics/the significance of various FISH/flow cytometry/other tests, becomes closer to actual patient experience and expectations, again.
And with techniques like CRISPR being developed, we may actually one day be able to go in and replace deleted 17p or 11q or other sections of DNA, or remove the extra piece in trisomy. Shades of Star Trek!
I thought it was a bit hasty of a conclusion, especially since I’d heard the “dying with Cll..” thing a few times. I’m hopeful speaking with the Cll specialist will be enlightening. Your experience is so inspirational and I’m so glad the newer treatments have been so effective.
I so agree with you and I strongly feel you need to be with a CLL specialist…smart move!!! I can’t believe in this day of all the treatments we have that any hematologist would say that. You fight hard to keep you positive attitude as it will take you a very long way. I would also work on getting my immunization to to date and maintain good nutrition and good sleeping pattern.
Please keep us updated on your appointment with the CLL specialist. You are I. A good area in the field of medicine an so if you don’t like the first one seek out another. Good relationship and communication is so very important!
I have had CLL for almost 34 years. I am on my third line of treatments and life just couldn’t be better!
May I ask which Mayo CLL specialist you are seeing/planning to see? If you don't want to share that information, that's fine. I ask because I am hoping to have a Mayo CLL specialist (Rochester) review my case before I start treatment soon.
I am curious if you live in Minnesota? I have thought about going to Mayo also, but my second opinions fall at the University Masonic Cancer Clinic. I love my doc there. He has helped me three times with decision making and he was right and my current treating doctor was wrong-which he did admit later.
I do live in Minnesota, and I do think Mayo is a great place to go for a Cll specialist group. That being said, I’m early in my journey and still figuring things out. If you are in need of another option, I think Mayo is a pretty great choice to have. Also they have a few good restaurants in Rochester to help keep you occupied.
The Mayo in Rochester is an exceptional place. I was fortunate to be able to transfer there after a pretty poor experience with another cancer center. My CLL is stellar. Best wishes and I hope you have a very long watch and waite
CRISPR is a gene editing technology. It's fairly new but has already been successfully used to treat a red blood cell condition, sickle cell anaemia: newscientist.com/article/23...
Speaking of CRISPR, I have a dear friend whose son was diagnosed with Duchenne Muscular Dystrophy, the deadliest of the MDs, several years ago. They are researching and trialing Exxon skipping, CRISPR, and other gene therapies for MD. I stay interested as these techniques will also benefit us one day. Medical advancements are amazing.
Well of couse I was in total shock. Took a good 6 months before I would no longer lie in bed at night, silently crying, every night.
I did some research into the disease state, it was a total unknown for me. I learned the "del 17p" meant any traditional chemo would likely not work, the data on that was coming out. Research into bone marrow transplant led me to Fred Hutchinson Cancer Center. The *transplant* doc wanted me to "fail" traditional chemotherapy before considering a transplant. I thought that was crazy. My local hem-onc, who wasn't a "CLL specialist" but read up on current treatments, was the one who read that the CLL specialist people, publishing around that time, recommended "BMT is only current potential cure". My understanding is that this is why Chaya Venkat's husband went that route (clltopics.net). I didn't want to go straight to bone marrow transplant, and decided to see what was in the research pipeline. So I got onto the clinicaltrials.gov website, and got into a Phase 1 trial of a MAB being used SC.
The early days of MAB infusions, which is where we were back then IMO since my definition of early use is "the drug has been in use 20 years or less", saw a lot more of infusion reactions. IMO people weren't as adept at preventing/treating because this particular drug class (MAB) was so new. So I wanted to try this subcutaneous MAB. IV rituximab and alemtuzumab hadn't had several decades of user experience behind them when I was considering using them. The biggest "problem" I could see was that the teams weren't really used to dealing with MAB infusion reactions at that time, a decade ago. Clinicians nowadays are. Another decade has passed, and newer agents like obinutuzumab are available. Since people noticed the infusion reactions with the earlier agents (IMO especially alemtuzumab), again IMO the people behind obinutuzumab really watched out for this, and aggressively developed protocols for dealing with it. Such that nowadays, even newer docs/nurses have extremely detailed, comprehensive information to handle any reactions that may occur. They are seeing it/learning about it in school, not something that occurs for the first time in clinic.
Thank you Sofia for sharing this with us. When u said u couldn't sleep and cried every night, it brought back to what I also went through after diagnosis. You have always been your own advocate and I want to follow in your foot steps🙂.
At 36 - your CLL journey is indeed likely to be long.
I was diagnosed back in 2015 at the age of - um - 58.
The best thing I heard was Dr Lamana of New York on a video recording stating "this is an exciting time to have CLL". That gave me great encouragement. Much has changed in our favour since then, Be encouraged.
Take time to read the pinned posts about CLL and how best to use the Forum.
Also about "locking" your post so only Forum members can see - you will get more response.
On this Forum much wisdom, experience and knowledge lurks.
And support.
Give us a try!
And - it is a time to live and reconnect with what important to us.
Not forgetting to get yourself fit for what is perhaps in store, bodily and knowledge.
Thanks jig, this site is kind of my home base for educating myself and as a source of comfort. I’m glad it exists. I’ll start locking my posts too, thank you for your help.
I think you'll find good debate, if something is not known, someone will go looking. Its is key that quality of evidence for treatment and other stuff that helps CLL is always good.
I was older when diagnosed (65) but it explained a few things in medical history that happened earlier.
Three years prior I had an abscess in a tooth (not unusual when you get older) and it went from being noticeable to being hospitalized 5 days later with doctors drawing on me with black markers as they tried various antibiotics to stop the infection.
I had swollen lymph nodes in my neck six years before my diagnosis.
So it’s been at least 11 years since CLL started making itself known.
I’m still on Watch and Wait ( or Watch and Worry). Covid has upped the worrying quite a bit.
First thing: get orders for vaccinations for flu, shingles (if you had the chicken pox), pneumonia, flu and Covid. Your immune system is better now that it will be later down the road.
Exercise, eat, and sleep well. I don’t know what exercise you engage in now, but whatever it is, try to increase it or add other exercise to it. Something that you like to do, preferably outside or at home. (Gyms may not be that safe of an option now).
Try not to get Covid.
If you have small children, they don’t need a long explanation of your diagnosis. You may only need to see the CLL specialist every six months at first.
If you do need to start treatment, remember there are many aspects of you important in their lives other than having CLL. You may need more tests, more medical appointments than before, but you are still you.
We are happy you are joining us here even though we are sad you need to. I have learned so much from others on this site.
Do keep us posted on how things are going for you.
Hey Snakejaw, I was also diagnosed in my 30's, well just about, I was 39🙂It's a big shock, especially when you find out that you are one of the 2-5% of patients with CLL diagnosed in their 30's (well, I don't remember the exact percentage but it is very very low!)worldwide.
I totally get where you come from. Even if I live for the next 20 years, that's still not enough as my youngest one is 2 - so you go down the line of thinking - will I ever see them go to uni, getting married, having children...
On the other hand, our age comes with an advantage, we can quite often tolerate treatments better, we can recover from any set backs quicker, we usually do not have any other comobordities...so I guess we have to look for positives in the unfortunate circumstances.
You found the best place to guide you on your CLL journey.
To be blunt, in my opinion that is irresponsible for the doctor to say. In that amount of time treatments can progress phenomenally. There is no rational reason to assume anyone can predict the course of this, with the incredible number of factors to consider. It's also utterly unnecessary to make any prediction.
I hate to say "Don't listen to your doctor" but what you were told is, to me at least, irresponsible. This is where you need to be with a CLL specialist who understands and deals with the latest research and findings. I was diagnosed in 2018 (or maybe 2017 - I can't even remember), and I was referred to a hematologist. She told me she thought I would need treatment within a year and now 4-5 years later I am still in "watch and wait" and being monitored by a CLL specialist. As many here have mentioned, CLL therapies are developing and improving. I believe that CLL will eventually be managed like diabetes and not every diabetic dies of diabetes! Don't get dragged into a hole of worry. Be mindful of what you need to do to stay healthy and be positive. You have many years ahead of you and you're likely of the generation who might see a cure to this.
It really put a damper on what had been a positive meeting. I was happy to not be needing immediate treatment, and also we were considering a lymph node biopsy that ended up not being necessary. So I was feeling good and then the conversation….took a turn lol. Anyway I think you’re right, looking forward to speaking with a cll special soon. Thanks for the encouragement.
I know its super difficult. But we can choose not to give words "meaning". I did this with much, much practice as an adult who worried about EVERYTHING, especially what an abusive mother, people like co workers, in laws, etc, said about me. I am a good, sensitive person & people sensed that as a weakness all of my life until I took control lol but sorry for "tmi"!!!!
My point is, as a teacher, I often had students "write out" what anyone said to them that hurt or bothered them. Then, I walked around w/my trash can giving them my motivational discussion about "words" & not giving them "power".
You seem to already have that mindset snakejaw. But, just in case you wanna try it, write it out, burn it up or trash it!!!
Keep on being positive. Seeing a CLL specialist makes all the difference. 36 is young and the other kind people on this site who have replied have far more experience than I. However, My uncle had cll diagnosed when he was young and fit at the age of 30. We didn’t even know that he had a couple of episodes of treatment in his lifetime. He had a happy normal lifetime, dying about 5 years ago of something else at the age of 86. Although you have been diagnosed at 36, you have been diagnosed at the best point in the last century, with amazing treatments coming through the system in the last few years. As wonderfully said, by the time you need any treatment, if ever, it might be reversible! All the best 👍
Thanks so much, I love hearing about other people who have had the disease and prospered. Just like everyone else here, I want to live a long time and not let it define me. I’m feeling optimistic I’ll be able to live a pretty long time, appreciate your comment.
Sorry but I think you went to a wrong specialist, we all know that CLL is a very slow progress, advice you to live normal, eat green vegetables and citrus fruits do sports , enjoy life , forget about CLL .
Don't let them rush you. Be your own advocate. Right down all your questions on paper so u won't forget what to ask. Let us know what happened on a new post.
Your new CLL Specialist will likely do a more comprehensive work-up, possibly duplicating some tests. My CLL Specialist had a different take from the Hem-Onc who first saw and diagnosed me. Made a big difference. I was so much calmer after that switch.
While I was in my 60’s when I received my “death sentence”, there are some similarities. I received my diagnosis from a hematologist at a big city university hospital. She told me there was not much she could do for me and my life expectancy was 1-2 years.
Luckily, she referred me to a cll specialist who was furious at the hematologist’s “opinion”. That was 8 years ago. Still no symptoms and tons of therapies developed and in the pipeline in that time. Started Acalabrutinib 18 months ago, not really because of disease progression, but because my immunity to infections has decreased.
My cll specialist has never thought that I would die from cll but with it.
As you will see from all the posts, no two cases are identical and you will likely outlive your “healthy” friends.
I don't understand hematologists/doctors who say negative things like this. I appreciated the distinction of my original local hem-onc saying something like "currently the data shows that people *in the past* had a 50% chance of dying within 5 years, and with your particular disease presenting so rapidly, and the bone marrow infiltration so swift and almost complete, I am not optimistic you will survive without intervention soon. BMT appears to be the only possible chance for a cure. Would you consider a clinical trial if you don't want a BMT?" That's a lot different IMO. And this place didn't do research studies At All; he had IMO simply read up on the most recent information for the "CLL" diagnosis that the FISH results gave. And even though I was shell shocked, the original concern was an acute leukemia, so I was a bit relieved that I didn't have that!
The trouble is that there are plenty of ill-informed people out there, doctors and social workers who look at Google and say "Oh yes, you're only going to last a few years" It isn't true and there are so many improved techniques around today. Having said that, my cousin's husband was diagnosed some 15 years ago in his 40s. He had chemoimmunotherapy (that is what was available then) and has been symptom-free ever since. With modern monoclonal antibodies and BTK inhibitors, treatments are even more targeted and effective. OK, it isn't "curable" but it can be contained and managed in a way previously impossible.
Hi snakejaw!
Well that was a ridiculous thing for your doctor to say! Sorry, but the progress in therapeautic interventions and meds is such a great thing! Perhaps that doctor needs to remember, treatment "data" is changing TREMENDOUSLY with all of the new meds!!! Plus, quite honestly, how much experience does your dic have w/younger folks with cll? Hang in there, and maybe consider a new doc? Not because we always need sunshine & rainbows but because we don't need the "static" of unnecessary or ill informed comments.
I hope you are well & I am glad you have found this amazingggggg forum!!
When I was diagnosed 15ish years ago at the ripe age of 26 years old, I was told that I might have 10 years, on average, to live. My markers are very similar to yours in about every way you have mentioned. 15 years later, at 41 years old, as of yesterday, I have yet to be treated. Now, I will say, that's where I'm headed in the next few weeks or so, but that's 15 years later! I am expecting to get a significant remission from this treatment, according to my CLL doc.
I don't think anyone can say to you what you are likely to die from unless it's imminent. I truly hate when doctors try to start making estimates like this. Not only is the data they have older and using older drugs, older individuals, etc., there simply is no way to predict the landscape of medicine over the next decade plus. Who knew we'd be where we are with the drugs that we have? We are getting closer and closer to making this disease something that you simply treat, a la diabetes, more so than a cancer.
It can really suck to have this disease. It can also really suck to have it at a young age. When I was diagnosed, I couldn't find anyone even close to my age to talk to. Feel free to reach out if you like. I'm sorry you have been diagnosed. But please know there are great treatments now. And please know that this community you have found here is wonderful. There are quite a few of us that are pretty young, much like yourself. But we also have the wonderful insight of our elder statesmen and women. Many in here have been there and done that many times over again and they are living life. I wish you the best.
Welcome to a wonderful group of knowledgeable and kind folks! I am sorry you are dealing with this diagnosis so young but the first thing I thought of when I read this thread is that you might be one who lives long enough to see a cure in your lifetime! That is how well things have been going over the last decade or so in treatment advances. I am so glad you are seeing a CLL Specialist soon - it makes all the difference in the world. Also - educating yourself on the disease, the terminology, hearing other peoples experiences are, IMO, the best way to reduce the anxiety, know how to communicate with your specialist, make a general plan, and get on with living. CLLSociety.org is also an excellent resource to review a glossary of terms, and get the latest information on treatments, access a CLL Specialists list, and learn about advocacy for our community. You are a parent - so you have the best incentive in the world to get your arms around this disease and move on. All the best to you!
Get yourself a CLL Expert- they are current in all Cll information and treatments- please think positive- my husband got sick this February and was immediately hospitalized (his kidneys were failing) and since then he is in a Dana-Farber study and is doing Fantastic! And his CLL Dr expects a cure within five years! So please think positive and get yourself a CLL Expert
Hi Snakejaw... fascinating user name. Since finding this community I've been able to access very helpful and informative advice both here and from the CLL society. Great informative advice and such a positive community always helpful and well meaning. I did find that I started spending too much time reading and consuming information, focusing too much on this aspect of life, which can take away from the rest. It is important to find a good balance. To know enough about CLL and the existing and new treatments to be an advocate for yourself but not be consumed. The one thing I would have done earlier is what cyclewonder and others on this forum recommend. Exercise and diet and some good mental health practices. It is not a panacea but it seems to me that there is enough evidence around that suggests good mental health (spiritual, meditation) regular exercise and a good clean diet (no/less sugar, avoid additives don't eat things out of boxes, more vegies etc.) won't hurt and just might help hold this thing off.
What a horrible thing for your doc to say! While unmutated patients do have more adverse outcomes, I was 35 at diagnosis and my specialist continues to tell me that I will probably live a normal lifespan provided I stop engaging in risky sports, and is also hopeful that the V+O treatment I had could result in a cure or at least a very long remission. Find a new doctor if yours treats you like that. While it's good to have a healthy relationship to death, that just doesn't sound accurate anymore.
I just want to add that I got Google to change the search results for the question "life expectancy CLL" (I have contacts at the company's policy team). It used to say 5 years! What a shock for me when I was diagnosed. Thankfully my specialist corrected that misinformation quickly.
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6 Years W&W...
Mutated and unmutated cll for dummies
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