1 day into a CLL diagnosis of my husband

Hi I came across this organisation whilst researching my husbands diagnosis to enable me to support him and my family in the best way possible. Naturally I have lots of questions so am hoping that using the forum I can benefit from the experience of others who are in my position. My husband is still shell shocked and therefore not ready to talk things through just yet but I am sure that we will get through this together and communication will become easier as time goes on. Any help would be gratefully received!

23 Replies

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  • Hi Mary,

    I think we can all remember the shock. I'm so sorry.

    You've done really well finding this group. Loads of knowledge and experience from kind and caring people.

    What have you been told so far?

    Nic

  • Our doctor is sending more information once the haematologist has completed further tests. We are still in the dark regarding specifics in Allan's case so will contribute more information when we have it. Many thanks for your response and I hope to help as well as be helped.

  • Welcome Mary and Allen. It is a shock for many of us at the start but you have made a great start by finding this site. Lots of infor, expertise and empathy. Tell hubby ( and yourself) to take a deep breath and spend time absorbing FACTS. Lots of hype and grap on the web so stick to sites like this. key that for many it is years before treatment and treatments are improving all the time.

    Hugs and keep strong

    UK Marc

  • Many thanks for responding to my post I will keep in touch through the forum on progress during our journey. It's comforting to know we are not alone. Regards to everyone, every little kindness helps.

  • Take a deep breathe and be still.

    We have all been there. I am so sorry your husband has this diagnosis. My husband was diagnosed in May 2016.

    You have found this site which is the greatest support you can have . You can ask any questions and someone will know the answer. Here you will get facts, personal advice and empathy.

    Remember that it is a chronic condition with about 30% never needing treatment and many do not need treatment for many years.

    Be careful what you read. There are a lot of unreliable sites and scare stories. We were advised (in the uk) to use this forum and the CLLSA main site, cll.org, Macmillan and cancer research sites.

    Consider putting all your husbands test results on here and there will be lots of us who will help you to interpret them.

    You will get over the shock and you will begin to live with cll.

    We will pray for you.

    With love,

    Sue

  • Thank you so much for responding and for some welcome advice. I will keep posting as and when I need to share and enquire. Good luck to you also I hope all goes well for your husband.

    Regards and thanks

    Mary

  • Please read some of tge other posts about being newly diagnosed it will help!

    Once you have sorted your heads ask away there are no stupid questions here as we all started from the same stage you are experiencing!

    Best wishes

    Geoff

  • Great that you are there for him and ready with your support-massive plus. There will be others on this forum with the same role as you and will help you I'm sure.

    Lots of great advice here.

    Peggy

  • Welcome Mary! I'm so sorry you had to find this forum, but I assure you that your in the best hands!

    My husband was diagnosed in Feb/16 after routine blood work, retired only 2 months! Our life immediately was turned upside down, we were thrown into a turmoil never before experienced.

    We have two adult daughters and told them immediately. In hindsight, I wish we had held off until we really understood this disease called CLL. On the other hand, They could tell something was up, and they're our family. We've told on those near and dear to us since then.

    It was only after googling "I need help understanding CLL" that I found this forum. Oh how I wish all Drs supplied pts with it at the time of diagnosis!! While our specialist explained the basics to us, we were shell shocked and speechless, and had few questions.

    Through this site the most important part of "CLL" to me is chronic. Whatever direction it may proceed in, it will be slow. The first few weeks, we had wills updated, finances examined, and Im embarrassed to say, funerals discussed!! I have learned SO much about CLL here. I'm the researcher/worrier of the two, my husband not so much. It works for us, lol.

    I have learned that treatments are improving all the time, that 30% of pts never need treatment, and so much more.

    I'm so glad you've found this site. Please ask any and all questions. I don't have any medical knowledge to help with, but I can assure you that there's always someone here with an answer, a shoulder to lean on, a positive response.

    Wishing you and your hubbie many happy and healthy days ahead!

  • Thankyou for your good wishes and it would seem we have a lot in common. We have two sons in their thirties one married with children and the other (the older of the two) single. Our older son has type 1 diabetes so we are no strangers to life changing health challenges! My husband has already said he feels his condition is secondary to the one our son deals with every day and has done so since he was 18 so he is already putting things into perspective. Whatever the future brings we will handle as we have always done, and like you I feel knowledge is power so I too am the researcher and this was the reason I found this support group so quickly. I am trying to take baby steps into understanding what all of this will mean to us as a family and am reassured knowing we are not alone. Many thanks for your help and support.

    Regards

    Mary

  • Was going to make a general comment wishing you well as a spouse and then I saw this! I'm also a CLL spouse and my husband has both CLL and T1D. If you are familiar with T1D there are many similarities here. Both are chronic conditions that can be tricky but are manageable with a lot of great options to help and both require support systems to be successful. The beginning is the worst, we're coming up on a year next week and I still have anxiety thinking about the place we were in a year ago. I felt better 2 months in when I learned a lot and we were done with all baseline testing and knew what we were facing. Find a specialist even if the stage is super early, they will be up to date on information and will ease your mind greatly. Best wishes to you and your husband, you are in great company here!

    Mindy

  • Good morning loves2walk! I too do the research and investigation. At first because I was going to uncover the panacea buried in the myriad google pages I scanned every single night. That didn't happen. Lol. What I did learn was that not all doctors are the same and not all follow the same tx protocols. This is an amazing eclectic group of warriors in this site. So thankful to have found it. Keep up the good fight. Enjoy your day!

  • Good morning! Many if not all of us have been in your position. I post as the wife of cller and remember that fateful day 13 yrs ago when David was told he had cll. We knew nothing and only heard the word leukemia. Got a second and third opinion. Nothing changed. Cll was now our monster under the bed. Didn'tell our adult children for five weeks. Researched it a lot because this site was not yet up. Davids cll is the least problematic so we enjoyed 12 yrs of wait and watch, using alternatives to keep things in check. During this period, many new and less toxic treatments were made available and when it became necessary for him to start tx 10 months ago he was accepted into a clinical trial with acp 196. It's an immunotherapy that has had amazing results. The emotional roller coaster for you Mary may seem overwhelming. But you got this. You will amaze yourself with the inner strength and patience you will need. You will find support from strangers in this site who will become your touchstones. You'll learn more about blood work, how to read the numbers, what are good signs and when you should be concerned. You will engage in a new way of thinking and living. Diagnosis is a rather unexpected bump in the road but with support you'll get through this. I promise. We are closing in on yr 13. And life is good. My thoughts are with you. Seize the day

  • Many many thanks for sharing your story and giving me hope for the future, I really do appreciate all the support and take comfort in knowing people care and want to help.

    Regards

    Mary

  • The first couple of weeks are the worst because of the unknowns. When anyone hears the word leukemia, they immediately think of the worst possible outcome. But after doing research and finding sites like this, this cloud of despair slowly lifts. You begin to understand your options and you see that newer and better treatments are becoming the norm. And at that point, you create a positive plan for going forward and you get on with your life.

  • Getting on with life is key to me and hopefully soon will be for Allan. We have just arrived home after enjoying a lovely meal with our eldest grandson and will now not take such pleasures for granted. Wishing you and yours all the very best!

    Regards

    Mary

  • Hello MaryandAllan, I think the forum is already helping you at this v early stage! I have been a member since October and relate wholeheartedly with your phrase "getting on with life is the key". Your outlook shifts gradually with CLL as you learn more about it. The first few months are strange as you are now carrying what I used to refer to as my little dark cloud on my shoulder. But in time you will both adjust to the new life, as for me the tiredness crept up a notch and it's just a question of pacing activities now. Most people are aware I have a blood disorder so aren't too mystified if plans get changed at short notice. You have found a great forum here - I check in daily - wouldn't be without you all! Wishing you all the best on your CLL journey x

  • Hi well done in finding this site so quickly ,I'm 9 months dx and only just found it a couple of weeks ago ,its definatly the best site for CLL info .I know ive been on a few others .yes it hits you hard at first the dreaded C word , but as others say the more you find out the less scary it becomes ,I would say I'm feeling better now the before dx as ive made lifestyle changes and diet changes that have helped .and now try to enjoy life more and be positive . it is what it is and life goes on .my doctor says I probably wont need treatment for 2 to 3 years or more I'm hoping I can make it a lot more . good luck from one Alan to another

  • Welcome to the Board Mary! My hubby was diagnosed 7 months ago. This board has helped me learn so much. My hubby is so medical illiterate that he had me go with him to his prostate exams! That is where his symptoms started in the lymph nodes there. I learn things every week here. If not more often. We cannot tell anyone of his CLL because he is still working at almost 70 and his clients might leave. He does plan to retire in May. I think, for us, saying he has a blood disorder instead of cancer is a good way to go in this small town. Thank you to the one who mentioned it. And I agree, that diabetes is a terrible illness and I am so hoping that your son can get it under control.

    My hubby loves walking and he feels very good afterwards. Just a thought if your hubby wants to try it.

    You are not alone in this. It is a different stage of living.

    Linda x

  • Welcome to a club that none of us chose to join. When I was first diagnosed my doctor said to me " the bad news is you have leukaemia.....the good news is you have CLL" . Breathe.....nothing actually happens for a long while and in many cases nothing is going to happen at all. Any questions.....ask them here....someone knows the answer. Xx

  • hello, and good for you to find this forum so quickly! my husband was diagnosed in feb 2009 after a blood test due to a lung infection. we all know it takes a while to get your head around this diagnosis and start to absorb the information :) give yourself and your husband that time and ask all the questions you need to.

    we had a little over 5 years on watch&wait which ended about 3 years ago. he had chemo treatment which failed, then 5 months on ibrutinib which got him in good shape for transplant. we are 2 1/2 years post transplant, and although still dealing with some difficult transplant-related health issues (GVHD) he no longer has CLL.

    watch&wait is a good thing -- there are even newer and better drugs available and in trials now that might even have helped him avoid transplant.

    DO take care of yourself too through this - care for the caregiver. "you can't pour from an empty cup".

    wishing you both all the best!

    ps - you may want to post your general location in your profile so people can respond with info relevant to the health system you are dealing with

  • Yes it is a shock to all of us but you are at the very best place to find information and support. Stay off of Google and all the negatives you will find there. Both of you need time to absorb the news and get your heads around it but then you will start to learn. I'm sorry your husband had to receive this dx but everyone here will be here to inform and support both of you.

  • I have been overseeing my dad undergoing his journey with CLL for the past 2 years. I have done a lot of research around this disease and I can firmly assure - out of all the cancer types, this is the one that has the best anti-cancer treatment and a lot of promising developments which help to secure a good life quality. Ibrutinib and Venetoclax are already available, Acalabrutinib and BGB-3111 are on the way and, finally, CAR T-Cell Therapy has a potential for an ultimate cure. Worth mentioning, in certain cases you may not even require a treatment. Once you learn this better, many of your anxieties will perish.

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