Hello all, I just found this group, and am so grateful for this type of resource!
My husband (41) of 2 months was diagnosed with cll on Friday. I'm so overwhelmed with the terms and information and I don't know where to begin.
He is going in this week for the FISH test. My question is, what can we do with the weeks we have to wait until we get the results in? I need like a "cll for dummies" because I feel like I can't possibly learn all of this, and I want to be the best partner I can be.
Also, are there many people on here with familial cll? His grandmother and mother both have it, but I thought there wasn't a genetic link?
Right now he's feeling ok, he has sores on both of his lower calves that we thought was eczema, but the regular creams aren't working, don't know if that's related?
Thank you for reading, sorry about the rambling, feel like I'm poorly treading water and would appreciate anything looking like a life boat. ❤❤
Written by
MrsCc6
To view profiles and participate in discussions please or .
Hi there and welcome to our community where I hope you will find support, information and friendship.One of our members, cajunjeff , wrote several CLL guides for Dummies and you can find them here:
Come back with any questions and don't worry if you don't understand everything all at once as this is a complex disease that takes time to come to terms with both emotionally and regarding information and how it relates to your husband's own circumstances.
I hear what you're saying, and for somethings yes, his Mom is great (Gma is also wonderful, but not at communicating health issues) Part of me wants to learn on my own, if anything just as a cross reference. Grandma was diagnosed first, and when his Mom was, they said it was coincidence. Now with hubby, that can't be. We are all surprised, and his sister is going to get tested.
my mother took DES(diethylstilbestrol) in the 50's to prevent miscarriages. my sisters and i all have cancer. theirs is breast cancer and mine is b-pll. we blame that.
Sorry, but probably not his mother and grandmother for information as so much has changed, even in the last 5 years. Prognosis and treatment both much much better and each case is unique, even within families.Jackie
It’s not uncommon that blood disorders are familial, though it seems there is much more to be learned on the topic. My mother developed cll at about the same age as I did (60) and lived to be 90. I don’t know the details on her “version” of cll as she has been gone now for 17 years. But I do know that the treatments available today are much different from what was available to her.
Hi, and a warm welcome to our group. As to your question about Familial CLL, it's my understanding (and I'm certainly no expert here) that all though a specific genetic link hasn't been found yet, Familial CLL, sometimes called F- CLL, is actually very common. It certainly is in my own family, and you will find that it's also the case with many other members of our group as well.
I'm glad you found us, I think you will find a lot of valuable information and caring support right here.
MrsCc6, So very glad you have contacted this group. You well reap a wealth of information and encouragement. Much goodness wished to you and your husband. Sandra🙂
Hello friend, it sounds like you are going through a lot with the surprising diagnosis of your new husband. Like many of us, my diagnosis was a big jolt as I had never heard of CLL. In your husband’s case, you have knowledge gleaned from his mom and grandmother and how their cases have been handled. Please know this- the advances in treatment of CLL have changed and improved dramatically in the past several years. New drug regimens have helped so many of our members and brilliant and dedicated scientists and doctors are helping us lead our best lives possible.
Until you get the results from the FISH, continue your studies here and continue the protocols we are all employing from the COVID-19 pandemic- wash your hands, wear your masks, and maintain social distancing. We are here for you and your husband for knowledge and emotional support. That is the power of our community.
Sending powerful rays of support from my perch here in Michigan! Carolyn
Hi sorry to hear your husband's diagnosis. I've been living with CLL since 2006 and first treated 2011. My identical twin brother also has the same but only diagnosed 2 yrs ago and still on watch and wait. I'm now on Ibrutinib and doing really well. Even after all these years I consider myself to be a cll dummy. Its different here in England because we don't have all the tests you have in America. The main thing is don't panic and do your best to live healthily. All the best keep safe
A warm welcome to this informed and compassionate group. Not only have you found a lifeboat, this group hands out oars for those who want to row.
One of the surprises of a cancer diagnosis is the reward there is in helping others out of our own experience. It helps bring purpose, especially with a cancer that is so different from other cancers. You will be pointed to very specific support and resources from worldwide experts.
Hello, try not to worry until you get the test back. If there is one thing I have learned here its making sure you see a cll specialists. I went to some cancer docs locally but they all had different opinions and don't see as many cll patients. The specialist ran genetic testing that the others did not. Everyone's cll journey is not the same. Main reason to have specialist on board.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Long Wait and Watch time
Best TIme to take imbruvica?
New To CLL and I had Covid in March 2020.
Is watch and wait still the best early option
IGHV unmutated & normal FISH average W&W time
