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Not feeling so well - I'm not sure how to deal with husband's new dx of CLL

suscet
Posts: 1
Joined: Feb 2010

Just looking for overall guidance;
My 60 year old husband has been recently diagnosed with CLL; he is a prior cancer survivor of 15 years with an unrelated condition. He has some other chronic health issues; he is working full time and has a busy life and lots of energy. His PCP picked up on it based on routine lab tests. We have consulted with an oncologist and now we have the good news that his fish test is normal, no signs of lymph involvement and blood is pretty good; Doctor says now its just "observation".

We have 3 children. The youngest is having nightmares and is really upset about the idea that his dad may not be around when he is an adult.

I can't really find anything on line about what to expect over the years in terms of progression of disease or how to help my kids.

What has been helpful to those of you who are going through this?

I don't know how much to share with others. I don't know what to tell me kids about sharing with their friends.

Thank you so much!

debbiejeanne's picture
debbiejeanne
Posts: 2305
Joined: Jan 2010

Suscet, I don't know about that type of cancer on mine, throat, but I wanted to reply to and welcome you to CSN. I'm very sorry about you husband and I will put you and your family in my prayers. I am surprised that nobody has posted a reply. Please don't get discouraged tho b/c I'm sure they will and then you will/should be able to get the replies you need. As far as how much info to post, I know it is easier for others to help when they know your husband's story. The most important thing is to stay positive and keep your faith in God. For me, it was b/c of Goc's Grace that I made it thru my cancer and treatment. W/o my faith I may not have done it. So stay strong and ask as many questions as you come up with. If you read other posts here it may also help you come up with questions.
God Bless and Keep You Strong,
Debbie

jhayslip
Posts: 12
Joined: Sep 2009

Dear Suscet,

No doubt your families world has been turned upside down when you discovered your husband's CLL. It may be helpful to remember though, it sounds as if nothing has actually changed with your husband's health. It's just that the blood condition, which may have been present for years, has now been identified.

Your oncologist should be able to help you and your family with understanding what to expect. The whole point of the FISH tests is to predict how agressive the CLL is likely to be or not be.

If you live in the U.S., you may want to ask your oncologist to refer you to a University cancer center and get a second opinion from someone who specializes in CLL. I work as a CLL researcher and physician and meet people for this type of visit frequently. It's not an uncommon request at all. Between your current oncologist and a second opinion visit I expect you and your husband will continue to learn more about CLL and may discuss with them further how you can best help your children.

John Hayslip

BrendaH2007
Posts: 4
Joined: Mar 2010

You can get a lot of good and accurate information from the American Cancer Society on-line. My doctor recommended their website for accurate and researched information.

I am still in the watch and wait phase after 3 years.My white count was 72 thous. last month. So far, I have normal blood counts in the other areas; no swollen lymph nodes or spleen.I am able to work full time but I am exhausted when I get home.I have night sweats also. There is so much being done with CLL research that I feel like we have a lot of hope to survive and fight this!

I would say to be honest with your kids. The hardest thing I ever had to do was when I told my kids that I had CLL. It's tough because you never know what the next appointment has in store.You and your husband can talk to them after each visit and let them know how your husbands blood count is. Explain, in concrete terms, what the disease is so that they can understand. Try to be positive and open.I think the worst thing for a person with Cancer is when nobody wants to "talk about it." That makes the person with the diagnosis seem like nobody cares.You or any member of your family, could also talk to a therapist. It is very helpful.

As a wife, be supportive, understanding and let him know how much he means to you and your family. Try to be as positive as possible and get involved with one of the Cancer Fund-raisers, such as Relay for Life or the Light the Night Walk that is specifically for Leukemia patients.Invite your kids to come to a doctors appointment with you. My daughter went with me once and found it helpful. The toll free American Cancer Hotline is open 24/7. The number is 1-800-227-2345.I hope I helped some.

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