Hi I am new here and trying to fin out how can help my husband to deal with CLL. He had his bon marrow biopsy and the doctor is trying to confirm if he has cll or not but he has most of the symptoms, night seaways, low grade fever, anemia. I am devestated so as him and my boys, please tell me how can I support him and my family and be strong for all of them.
Need help to be able to support my husband and... - CLL Support
Need help to be able to support my husband and my family
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FM1116
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Welcome to the site. I think you are helping him and your family by coming on a site like this and educating yourself about cll.
If your husband does have cll, over the next year you and he will learn a lot about cll. Its very confusing and scary at the start. But you will figure it out.
Here is what I think is the most important message for someone newly diagnosed with cll. For the large majority of people diagnosed with cll today, they have a very treatable leukemia and an excellent chance to life a normal life with a normal lifespan,
Cll treatments have been revolutionized in the past ten years such that some people can treat cll with nothing more than a pill a day with tolerable side effects. A cure is possible, but even without a cure, people can live with cll just as people live with diabetes and other chronic illnesses.
I am treating for my cll now and after working this morning am headed out for a round of social distancing golf this afternoon. Many of us, including me, have used our cll diagnosis as a reason to exercise more and eat healthier. But tonight is pizza and beer night for me, just as it was before my diagnosis.
I hope you will stick around and learn more. I do not want to sugar coat it, there are challenges with a cll diagnosis. I still think it fair to say that most people diagnosed with cll in 2020 have an excellent chance to live out a normal life managing their cll.
Oh thanks so much for your reply, I am glad that you are doing well. We are going to wait for the dr call but you know how stressful it is. My husband doesn’t say anything about it yet but it feels like there is an elephant in the room. I am a nurse but not oncology nurse so some of this is new to me but I can understand some. Please stay healthy and be safe while playing golf today. Enjoy
Hi, I was so confused with my diagnosis. Recently I figured some of it out and tried to put it in more simple terms. With a nurses background, you should pick up on this way faster than I did. This link is to some amateurish attempts I took at dumbing down Cll, I hope it is helpful to you:
I’ll say it again Jeff, I love your posts. So much hope and positivity from what you say. Have a great weekend
Hi Madison, thanks for the kind words. I won twenty dollars at golf today, had a great great pizza tonight and am overindulging in adult beverages as I type this. Life is good. I hope you are having a good weekend too. Jeff
Hi,
It’s very difficult to hear and understand one day you world can change so quickly, but in actuality for most of us we had this possibly for a while before our diagnosis. My first reaction was to go online to Dr Google. What I found was outdated information. Second thing I did was share my diagnosis with a few people early on which I regret. It will take time to adjust and absorb this overwhelming information but accurate updated information is important especially in making any changes in your life. Since diagnosed 3 years ago the treatment field and know has dramatically changed for the better. The newer treatments early on are showing significant improvements and will continue to yield both better results and lead to even more findings. It’s difficult but try not to panic, easier said then done because I was definitely in a panic state for a good 6 mths. Also find a good specialist you trust and can talk to. Makes the world of difference when your doctor can explain it where you can understand more than you would by reading it online. The forum and members on this forum are awesome and will gain much needed information and confidence from them. Best of luck
A great site to go to as well is Patient Power! I found a lot of comfort on that site and there are experts in the field that talk and explain certain testing, treatments, progress in the field of CLL being made other patients that have the disease. ❤️
Hi , my hubby was diagnosed in October last year. It was a complete shock! This site is amazing to gain knowledge and practical advice and a lot of humour. He was put forward for a trial but couldn't do it because of his markers but is now on Ibrutinib as he needed to be treated straightaway. I am glad to say that he is feeling so much better now and is now feeling a lot more positive. I found as the days go by the panic subsides but it has been an awful jolt in our lives. Wishing you all the very best and take care. x
Hi, thank you for sharing your experience, it is really hard. My husband is runner and was super healthy before all this. I hope he is going to be ok too. It is devastating time for us now since we are waiting for bone marrow results and dr call. I am grateful for finding this forum to be able to learn and meet nice people like you. Thank you, stay safe
I know. It is so hard and I feel so much for you. It is the hardest thing waiting for results and the feeling of not knowing what to do is unbearable. I physically froze for some time, My hub was also working in a physical job, but we both felt he was not 100 per cent. But nothing could have prepared us for the diagnosis. To be honest, we are stumbling through things at the moment but really try to take things one day at a time x
I know, I wish the best for you and your husband, I think all of us should take one day at the time.
I know. I find this site so comforting, like my favorite cushion when I don't know what to do. I have a husband that is trying to be so brave but totally incredulous that he has this. The experienced people here are so brilliant and just put everything in perspective. So calming. I am still a total newcomer to CLL but have found this site truly great and I hope that you do to. Where abouts are you. We are in the UK x
The waiting is awful I have to say, it's stomach churning. Try and take things a bit at a time. The words are scary enough.....our son was diagnosed last August with ALL acute lymphoblastic leukaemia out of the blue 4 weeks after graduating from uni. Never been ill. He had a stem cell transplant February. I found it hard saying the words Leukaemia and the C words....we all agreed to call it lemons. Far nicer word. Take your time with this. Stay safe x
I am so sorry that you had to deal with your son ALL, it makes it harder when it happens to our children. I hope he is doing goo after he has transplant. I am trying my best to be strong but sometimes I lose it and hide somewhere in the house so I can be alone and cry. I wish you and your son the best. Take care of you first to be able to help.
Hi you have come to the right site to help your husband. He will need time to process the shock, we all do, and to handle it in his own way.
In your position apart from providing emotional support and understanding, I would learn as much as you can about CLL on this site to share with him when he is ready and able to digest it.
Receiving a CLL diagnosis triggers a complex range of emotions which are best described as bereavement, for the loss of our good health and fears that we are going to die based on what we have just heard, cancer and leukemia. So naturally we want to discuss treatment and want it to be taken away. Unlike many other cancers the majority of people do not go into treatment immediately with CLL which can be scary for some.
We are also informed that we may be one of the lucky third of the CLL population, who never need treatment, which is true. This is good news but it leaves us dealing with a great deal of uncertainty which can fuel the initial grief. Many of us would prefer to be treat immediately, but this does not help. How can that be given we have always been told that the sooner we catch and treat cancer the better. But it is true and it is a plus for those lucky one third of us.
For those of us who do go into treatment myself included there is in today’s world a lot of choice, which is great news but hard to get your head around.
We have all been through this on this site and all come out the other end whether we needed treatment or not.
It may not seem to be the case right now but there is light at the end of the tunnel. As Cajunjeff said if your husband ever does need treatment this is a very treatable and manageable chronic disease, which may have the cancer and leukemia label but is managed more like any chronic illness we are more familiar with, diabetes and asthma to name a few.
You are the start of this journey and I wish you both well. Keep us informed of your progress.
Good luck and god bless.
Ann
Hi , thanks for reply, I am greatly appreciate all these replies, I am so glad to find this forum. I will stay around to learn more. Stay safe and happy
Welcome to the group! My husband was diagnosed five years ago. My role has been to do the research I was pretty sure he wouldn’t do. I’m also not sure he would have wanted to read some of the things I read.
Since then, so mush has changed in the treatment landscape and my role has changed to encourage and help him eliminate stress. I have noticed that he stresses more easily and we keep working to get rid of as much as we can.
Your role may be different, but stay positive even if you aren’t feeling it and confide in us or a trusted friend. Honestly though, the outlook is bright for him so be encouraged.🙏
You came to the right place for support and to gain knowledge. I'm new and am learning so much.
MsLockYourPostsPassed Volunteer
You don't say what family means - children or other relations. One thing I recommend is to order copies of the lls.org CLL specific booklet. When you do tell people with a need to know, you can provide the booklet as a reliable resource. Also point them in the direction of cllsociety.org It will give everyone common references.
When I was diagnosed I went straight to google. Everything said I'd be dead in five years. Newly diagnosed are still finding those same articles and other dated and incorrect information today. I laugh when I see members who are just 3 - 5 years out from their diagnosis talking about how much treatment has changed. It is changing at lightening speed. While clearing clutter recently, I came across the LLS booklet that I was given when new - 17 years ago. None of the treatments used now existed then, even in trials. Several have come and gone, because something more promising was discovered.
Expect your husband to be around for some time!
Hi, we probably will have a call from dr some times next week since we were told it takes two weeks for bone marrow biopsy results. I am trying to educate myself and my family in case we get cll diagnosis. Thanks for sharing your experience, stay happy and safe.
The one thing you should do is find a CLL specialist if in fact that is what he has as you need someone who specializes in this disease, and thankfully you live in a major city so try to look up references. A normal hematologist although they specialize in blood diseases as you know do not always know how to handle this kind of illness it really takes an expert otherwise a lot of times people go under unnecessary testing and treatment when more conservative measures may be the right thing to do.
We found name of some specialist to go to. Do you just ask your oncologist for your medical report and go to specialist to follow up or do you keep your oncologist in the loop too?
When and if the diagnosis is CLL, ask your doctor to refer you to the CLL specialist and if he agrees he will forward all applicable information. He should be willing to work together with the specialist. Don't be worried that he will be offended, there is no reason he should not want you to get a CLL specialist to work with for you. If he resists you seeking further advise then make the decision that is best for your husband and if need be make your own appointment after getting all medical data from the medical records sent to the specialist. I hope others will add to this on how they handled it.
I agree with all the other replies. I was diagnosed 2 and half years ago and had chemo after a year, nearly a year in remission now. It is all very scary especially when you are waiting for results. I'm lucky, I have an amazing Oncologist and support nurse. I also joined the local cancer support group and had complementary therapies and met people going through the same thing as me. Bloodwise UK is one of the best sites for straight forward information. He will probably be given the booklet if he has CLL. Wishing you both well.
Hello FM1116
Nice to meet you and your family. First thing is to keep grounded, yes your life will change some, but this is not the end of life as your family remembers it. I feel blessed to have CLL because there are a lot of thing much worse. The more you learn, the easier it is to handle. Blessings.
Hi Dee, my best friend name is DEE. I AM GRATEFUL for people in this forum with all the information and supports that they provided me. I am a nurse but since I am not an oncology nurse I should learn about this disease to be able to help my family. Thanks for sharing, stay happy, and safe.
I understand how your husband and yourself must of felt hearing the news,but all is not lost.I was diagnosed 12years ago,am on watch and wait,no treatment,just live a healthy life and do my best to keep reasonably fit,as others have said,a lot of us simply live with CLL ,and have a normal life span,fingers crossed for you🤞
I am glad you are doing good. Thanks for sharing your experience, it helps a lot and give hope. Stay happy and safe.
Thank you, I am happy for you that you are doing well. We will hear from the doctor this coming week and I would let everyone know what happened. Stay healthy and safe
It was 14 years ago for me and I remember it like it was yesterday. I felt like I had been blindsided, went to Google and didn't know what to believe. I found the Leukemia & Lymphoma Society and got their booklets, connected with a social worker, and it was a great help. Now with forums like this, there is much more support. You can consider us your support group, your new family,
My oncologist believed I would need treatment soon but I never have needed it. I am fine. Much of what I worried about never happened.
Best wishes!
marcyh
I am so happy that you are doing good, we are waiting for his oncologist call to give us bone marrow biopsy result and tell us if he has cll. His symptoms care like cll. Night sweat, low grade fever at evenings and anemia. I don’t know if these symptoms are going to go away or he will have it for rest of his life? Stay safe and happy
MsLockYourPostsPassed Volunteer
Dr. Mark Weiss is in Philadelphia. He has been recommended by others. Perhaps others here will know some of the newer doctors in the area. cllsociety.org has a list of recommended doctors and, at the top, links to two other lists. If a doctor is on two of the lists it's a good start.
Wow thank you, I will check on that. I know that dr WEiss is working with Jefferson Hospital which is a really good hospital. I used to work there. Thanks again
Hi FM1116:
"Please tell me how can I support him & my family...?"
Well, you've already taken one of the most important steps - finding this forum. We've ALL been exactly where you are, and you'll ALWAYS get some excellent advice. My first piece of advice: re-read CajunJeff's initial post! Next: Be VERY skeptical (mainly disregard) of all the outdated stuff you've read in Google. Before my CLL, I seldom paid much attention to the DATES of their articles. Don't make the same mistake! NEW info, from a reliable source is fine, but you will probably already have seen it here.
Thirdly, absolutely believe the post that talked about how far CLL treatment has come in recent years. When I was diagnosed almost 20 years ago, NONE of the pills commonly used today even existed, and harsh chemo was the drug of choice. I'm well past the optimistic 10-14 year life-expectancy that I was given at the time, and it's a good bet that one of my non-CLL ailments will get me before CLL does. And, new treatment advances come almost every day! Today it's a combo of pills and IV treatment. Tomorrow, it will be newer pills, and a new combo. Next year, who knows what - but it will soon make today's treatments as obsolete as the "Rituxan monotherapy" that I first got as the newest breakthrough at the time, but today is rarely seen outside of some CLL museum.
Best of luck to you and your husband, and family. Maybe in 20 years, you can write a similar post to this blog - except you will be telling about the CURE, not just the newest treatment.
Gary
Thanks for your reply, it gave me lots of hope. I am glad that you are doing well. I did read so much articles on cll and you are right all of them are outdated. I am grateful for this forum and all of these wonderful people. Thanks for sharing your experience. Stay happy and safe
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