Hi my name is Rabah from Columbus, ohio 45 years old with two kids 5 years and 9 years old I got CLL last year September 2021 and just two months ago 2022 doctor said your CLL IGHV is unmutated . I am in watch and wait , now I lost no friend no knowledge about CLL especially unmutated I don't know what I have to do .Thanks
After diagnosted with CLL I lost : Hi my name is... - CLL Support
After diagnosted with CLL I lost
Written by
Karate
To view profiles and participate in discussions please or .
41 Replies
•
AussieNeilPartnerAdministrator
Hi Rabah,
You've found a great community to provide you with support and knowledge to give you the best chance at being there for your family into their adulthood. You also live near one of the top CLL management and treatment centres in the world. You have OSU close by! We have other parents of young children in our community, including mothers who have gone through pregnancy with CLL.
With respect to your unmutated IGHV result, that used to be a problem back when we had the old chemo drugs. Modern targeted therapies work about as well with mutated and unmutated IGHV. Life expectancy is approaching normal. Reducing your infection risk is very important, so get up to date with your vaccinations. You'll find lots to help you in our pinned post section, which you can find here: healthunlocked.com/cllsuppo...
It includes a post on recommended vaccinations: healthunlocked.com/cllsuppo...
Neil
my advice is to read this site every day, check related posts for areas of your concern. You live in a city which has a highly respected, world class CLL cancer center at “The James Cancer center” at the OSU Medical Center. You will do well to ask to be a patient of Jennifer Woyach, MD who is an eminent CLL specialist and very involved in the latest research.
Thank you for your advice and I appreciate your support.yes I am with the same doctor you motioned just three months ago I started with her .Thank you
you cannot do better. Follow her advice with confidence.
Hi - the first year of CLL is rough mentally. CLL is a disease with a wide range of markers and progression. I recommend you check out cllsociety.org. It's a good site to learn the basics about CLL and what to watch for. Start with the "Newly Diagnosed" button or the "CLL Information and Management" tab.
CLL involves a lot of tests and data and it's hard to tell what is meaningful and what is not. Getting some basic idea of what it all means will help you gain a sense of control and influence.
I have children at home but slightly older than yours. We did not tell them for many months until it was clear that I might need treatment and that we would need to be careful about my immune system.
Many people go 10 years before needing any kind of treatment. Even if you do need treatment, the treatments have gotten much better in recent years and often have great outcomes. So all is not lost.
Hang in there.
Thank you I and I appreciate your answer.my young kids they don't know what going on they're very young 9nly my wife knows about it you know at this age it's very scary especially when you see your kids they still young and I don't have a family to take care of me and them if something happens to me (no parents no brothers or sisters or cousin I moved to this country to change my life and family life for good but now I am sick and worried.
The thing that helped me most in that situation was getting a support system set up… both medically / insurance / financially and social / friendship / religious.
CLL can be a lonely place. You’re sick, but not that sick and it’s not obvious. You can’t work as well as you did, but you can’t just quit and take disability. You have to earn for your family’s future, but keeping a job or getting a new one can be hard. Even if you have life or disability insurance, it may not kick in.
I didn’t tell my employer until I was clearly going to need treatment and accommodations. But I told a few friends and my religious counselor early. They have been really supportive, and Columbus tends to have stalwart Midwestern types who are more than happy to help someone in need. This board can be very supportive, but live face to face people are even better.
Half the battle is “not feeling lost”. I still struggle with the speed of change in an active professional life that got blown to hell by this. But I don’t feel alone, and count it as a great blessing that communities (including this one) have stepped up. Hold on to that. It does help over time.
You might also read up on the Americans with Disabilities Act; there’s been other posts here on that topic. It will offer some employment protections in your situation, and if you are at a larger company, it helps quite a bit.
The words "cancer" and "leukemia" have, for decades, meant that one was very very sick and could/would die, in the near future. CLL is not generally like this. It is often more like hearing "diabetes". With diabetes there are things one has to do, to not have it affect your life as much, and to prevent complications and problems from allowing diabetes to run amok. So CLL is more like diabetes.
What is really really hard at first, is the shock of the words "cancer" and "leukemia". It's because of what we have been taught, about the meaning of these words. So while you may be "sick", you probably will continue to live a fairly normal life, if you modify your lifestyle the ways your doctor recommends.
So I am sorry you have gotten this diagnosis, but am happy you found this site. There are many people here, with many types of CLL, and you can ask questions and read about the different types of things we are all dealing with. Because the #1 takeaway from hearing "CLL" is that it doesn't act the same in everyone. Some people feel like nothing much has changed, physically, other than hearing they got an official diagnosis. Others have symptoms, went to a doctor, and got the diagnosis as a result of investigating the cause of the symptoms.
Your kids don't *need* to know much about this diagnosis right now, unless for some reason you are having symptoms affecting other aspects of yours' and theirs' lives. With about 1/3 of people having this diagnosis never needing any treatment, you may not need to ever have some "big discussion" like you would if this was a different diagnosis. So please try to wrap your head around this being something you probably will die *with*, instead of dying *from*, and not anytime in the near future. I imagine at some point you will be explaining to your grandchildren about your CLL and what it means to have it.
Karate, you have come to the best group in this entire world and we do have members from all over this entire world! All our questions and concerns are responded to by someone in this group. I'm 73, in W&W going on 3 years, blood numbers remind me I have a diagnosis of CLL, but it has not stopped my daily living. I am careful to keep my immune system strong by avoiding cramped crowds(I'm ok in most restaurants and church and family gatherings), I eat a better diet and am learning to remove stress in my life, usually by simply changing my thinking or reactions to things. That last one is important. Find, for you, a time to regain a calmness as you live each day. I wish you strength and many fun times. 🙂 Sandra
You'll get fact based answers and support on this site. I was 57 when diagnosed, also unmutated, started on medication (Acalabrutinib) after five years of W&W. I've responded very well to the medication with no nasty side effects.
I think one of the key points made above is about the mental adjustment to the diagnosis. This does take time and everyone reacts in their own way, but speaking for myself I think I can say that my CLL occupies a lot less headspace than it did (particularly in 2020 of course).
For me it's good to try and stay reasonably fit and active. (I'm also an advocate of Wim Hof style cold showers and yoga, but that's not for everybody!)
Wishing you all the best.
Thank you for your answer and I appreciate your help.by the way where you from?I am taking cold water and working outside in cold weather but I started recently for watching YouTube about that the famous ice man.
I do also water fasting 72 hours to 96hours Avery three months but I don't know if it is good and healthy for me with CLL .
I was 57 when diagnosed with a WBC count of just13000 and like you was found to be unmutated . You'll be on active monitoring for the foreseeable future. Treatment came for me after almost 4 years. We all present the disease differently and progress on our own timetables. I was still very active for a long time after being diagnosed. My diagnosis came after an annual physical. I never had an enlarged lymph node until just prior to treatment. What triggered my need was a sudden onset of extreme fatigue and a rising WBC. I was lucky to get into a trial that was looking into a combo of Venetoclax and Obinituzimab. After six months of treatment I was UMRD and stopped all drugs after 9 months and a second confirmation of my UMRD status. I wrote about my treatment experience on this site as a diary of my treatment experience. I have gone back to the active lifestyle I enjoyed before treatment an remain UMRD one year out. I have blood drawn every 3 months, so the close monitoring continues. I like you practice fasting and just completed a 96 hour fast. I started this along with intermittent fasting about a year ago to periodically cleanse my body. Who knows if it will help, but I know I have more energy than most folks half my age. In closing, learn as much as you can about the disease to ease your mind. There are miracle treatments out there that help those of us unmutated people. My own dad had the same disease but didn't have access to drugs we have today. I am sure he would of had another 10 years of life had had them. Be well and know you're not alone in this journey.
Hi again, I live in Edinburgh, Scotland - that shower can get fairly cold this time of year!
As far as I know there is little or no really reliable medical evidence on the health benefits of cold showers or cold water swimming, but those of us who persist with it do so because it makes us feel better or stronger or happier in some way. I do feel it may have made my immune system more resilient, but there's no way of really knowing.
Wim Hof has his own explanations and theories which to me seem credible but not proven. Anyway, for me the day hasn't properly started unless I've had a cold shower and a coffee!
Trying a cold shower and deep breathing techniques are one thing, but for anything more extreme like cold water immersion such as he practices, one is advised to talk to a doctor first as it can be dangerous!
(I've never tried water fasting but I do try to eat fairly healthily.)
I see you've had lots of supportive responses here and I hope these have given you some reassurance. All the best.
Hugs to you and welcome to the club you don't want to join - the young cancer club. I'm a member, too, and I have 4 kids who are all at home in elementary school to college.
For now, just remember that your genetic markers are prognostic (and thus possible), but not certainties. At my diagnosis, I had practically the worst factors you can get - and I'm now getting to about 2.5 years watch and wait, and am working towards my 10 year W&W goal (although my spleen starting to enlarge more, even if slow, might not get me to my 10 year point, but I'm not changing the goal:).
As for what you "need" to do now - nothing. Just keep going to your watch and wait appointments and live your life.
That said, what you "can" do...What I did was take the diagnosis as a sign that I finally needed to put myself and my health 1st - before the spouse and kids. So, I focused on that aspect of my life, figuring any good I did might not slow my cancer, but might help me when treatment time comes. So far, so good.
Something else I've done, which is the same as above (not gonna slow the cancer, but will make the path easier) - I have avoided illnesses, and to do that, I told everyone in mine and my kids' lives. Telling some/none/or everyone is something each person weighs based on their own personality, their possible work/career repercussions, and their own relationships with friends and family. Know that whatever you decide will be right.
Thank you I will and I appreciate your answer.
Hello, Karate,
I was also just diagnosed with CLL. I'm 55. You found the right place online to be, that's for sure. Everyone on this site is super kind and shares amazing info. I was staged at "0" and I'm in 'Watch and Wait' and my plan is to take good care of myself and not worry about this disease.
Best Wishes!
My sister lives in Columbus! Go Bucks!
You are in good hands at the James. The best hematologist just left there but is only short ride to Cincinnati- Dr. Byrd.
Don't fast that long. Diets don't really effect our CLL. My hematologist said to enjoy life and moderation is good way to go with foods. Too much water is not good either. Hopefully you are on W&W many years.
Join many CLL sites. This is a great one too! We are all here for each other. 💕
I am doing crazy things prolonged water fasting ,taking cold shower taking vitamins C,D3 ,drinking green tea, i stoped eating fruits no cakes sweetness but I don't know if it is good for me.I am with Dr woyach now at jams
I been diagnosed September 2021 and I still W&W my WBC are 37000 lymphocytes 77%other things are normal for now.are you from Columbus Ohio?
My suggestion for the stuff you're doing - what would you do if you just wanted to be generically healthy?
The extra vitamins, the green tea, skipping cake and extra sugars - probably would fit that category.
Water fasting, cold showers, no fruit (unless you make sure you're making up for that loss with veg) - probably less so.
So, my non-medical advice - do what makes you happy and stress-free. And don't do it to extremes.
I though cold shower is good for boosting the emuin system, the water fasting is good for autophagy to kill the cancer cells with CLL we lost weight even we eat a lot and with worry is hard to eat like before we get sick because I use to eat a lot without thinking I was healthy no fat it was muscle my weight was 226p going to the gym 5 times a week but now is hard there is a calculation what we have to eat and what we have to avoid or less I weight now is 174p streets, worries thinking making me loosing weight
Hi Karate,MisfitK has given you very good advice. Your efforts to slow your CLL progression are understandable - many of us try unproven things to try and do this, but that's what they are - unproven for CLL. Without proper trials you don't know if you might be worsening your CLL.
We endeavour to keep the information shared in this community evidence based. We do have a pinned post on what we can do here :
healthunlocked.com/cllsuppo...
Remember, CLL is a chronic health condition, so slow changing.
Neil
You are overthinking which is normal. No need to do all those things, the cold showers, skipping fun food....just enjoy ur family. You haven't mentioned any other side effects like pain or leg cramps etc. I had no symptoms. Started at age 52. Was on W&W 12 years before I needed treatment. I am sure Dr. W has been supportive. What is she saying about all your extreme changes of life style?
My sister has lived in Columbus since graduate school at The Ohio State University approx 45 years ago. I live in Florida. Previously in NJ.
I meet with a group of CLL friends 4+ times a year for lunch in my area. We live about an hour to 5 min from each other. Maybe you can start a group & reach out. We text each other all the time and have become great friends. There are a lot of members from Ohio. 💕
For now I don't have pain only my right side of my neck and small lymph nodes in my armpit
I didn't tell her because I was with different doctor and the last three months I transferred to her
HiI was diagnosed stage 4 CLL at 56, 2 years on I am in remission living a full and normal life as a full time dad to my youngest two kids of 5 and 3. My advice is to live life to the full as you only get one life
Understand they tell you nothing... Research it to Death... I have had CLL for 11 years now ...change Everything.. Eat Healthy.Exersise Daily ....I eat all organic foods walk Daily stick to all natural organic products....I have had no treatment...I live close to you Canal Winchester Ohio...Hello
Karate• in reply to
Your CLL IGHV unmutated or muted
• in reply toKarate
Muted at this point..but my blood work is better I kinda fell off the Healthy Diet was eating things I should not have and became very sick but made changes and Blood is Better..we just got to listen to our Body when it talks to us . Believe me Blood Don't lie and what we put into our body is very important....we are either feeding our Disease or we are Healing our Disease.....
Karate• in reply to
My is not muted means original is not stable according google and people and I didn't found one patient with IGHV unmutated with long time in W&W for now I mean 10 years or more and if there's I want to talk to them it gonna be better for me
Please do not read random Goggle websites. There are valid, medical ones but just because it is on the Internet does not make it true. People try to twist facts to get people at their website, they make more money from the advertisers when they get a lot of clicks/reads. These people spend money getting on the first page of a Google search. I find I often have to search several pages before finding links to reputable medical websites.
Karate, remember you are far more likely to die with CLL, not from it. Be careful who you tell and what you tell them; they are likely to look it up on Google and think that you'll die within five years or so. It ain't necessarily so. LoveNatureLife's posting is a classic example; 11 years of W&W and no treatment yet. Treatments today are so much better that you could well live a "normal" life span with no problems at all.
Thank you for your answer and advise you know I had it just a year and half ago I still worry and I don't know what I have to eat and how I can slow it ?
• in reply toSERVrider
Everyone has a choice of How they live there life .when it comes to Blood Cancer No cure they say ....well my sister lived Seven years with treatment and I have children relatives who never even had a chance so you get chemo for years then you Die Fact's ....so please do not judge ....your choice of what you want to do with your body ...I am at eleven years...just Incase this message is a response to my eleven years my body I own it ...Good luck with your Journey...we are here to share our journey and experience strength and Hope with one another..not judge...one another...
Karate, you've found a wonderful site for support! You've already gotten great advice. It's hard to calm your mind when you hear the word, "cancer". We've all gotten through it in our own way but together on this wonderful site. Ask any questions. Share your concerns. It will advance your knowledge and help calm your mind. Your ARE NOT alone.
I am in w&w. My advice is this- Unlike other cancers, CLL feeds on saturated fats, not sugar. So follow a healthy balanced diet, get regular exercise, and God I know it's hard at this point, but try to get adequate sleep. Sleep is so very important. That is when our bodies heal themselves.
Back to the diet thing for a moment...I had upset tummy issues until I introduced beets into my diet and tons of my garden veggies. Avoid foods with pesticides or preservatives. Our immune system lives in our gut. Feed it wisely. Visit health unlocked daily. You'll learn tons and feel better about your outlook.
Best wishes to you.
Thank you for your advice and I will follow all advices from others I been lost before I found this website a friend from FC who gave it to me she was diagnosed with CLL when she was 45 and now she is 60 years I was contacting Andrew shorr who been with CLL for 29 years but I am never get answer from him but soon as I kenw he been for 29 years with CLL he already gave me hope to live and enjoy in this life without forget all people who answered to me thank you for all of you 🙂
Rabah;
Google "how to treat unmutated IGHV/CLL", and you should find information from a Dr. Curtis Hanson via "CAP TODAY" - a medical publication. Dr. Hanson is affiliated with the Mayo Clinic, which is really the next step you may want to consider for treatment options. Obviously, unmutated IGHV is worse than mutated genes, but there are treatments.
Best of luck & God bless!!
Phil Keever
Karate,I live in Gahanna Ohio if you ever need to talk let me know. I was diagnosed 5 years ago and have CLL unmutated. I am 60 years old and started my treatment last week and driving to my second. I elected to go the obinutuzumab/Venetoclax route. First treatment went very well. Matt
Not what you're looking for?
You may also like...
unmutated cll patient treatment with fcr
hi there. i would like pls to know if unmutated cll patients as i am have complete remision for...
FCR or BR?
Hi all,
My dad is 69 years old and he has CLL. His blood values are oke but his lymphs are very big...
Unmutated CLL and MRD-
Hi all - I was just posting this question on the CLL Group for Younger Aged People on Facebook, and...
Can I be cured of CLL?
Can I be cured of CLL?
In reference to cure of CLL - Interesting posts.
I have Trisomy 12...
Mutated and unmutated cll for dummies
When told I had chronic lymphocytic leukemia (cll) four years ago, all I heard was "leukemia"....
CLL - Leukemia Cutis
Newly diagnosed with CLL
B-PLL: Ibrutrinib Monotherapy or Obinutuzumab (aka Gazyva) & Venetoclax Combination as first-line treatment for transformed CLL
Treatmant for cll
Importance of CLL Specialist
