Recently diagnosed and need someone to talk to

I am 59 years old and was recently diagnosed with CLL at the watch and wait stage. My primary doctor doesn't seem too worried at this point. He said my white blood cell counts were high, but not too high. He told me what they were, but I don't remember now. He also said I will need to go to a specialist at some point. I also have high blood pressure, IBS, fibromyalgia, migraines and problems with my back after 2 back surgeries and am on disability. So I basically don't ever feel very good. I have been having a lot of flu like aching and was wondering if this is related to the CLL. A couple weeks ago I had a sore throat and fever of 101.2 for a few days. Then it went away. I am just not sure what to expect and have been reading a lot about this disease. I know it will be different with each person, but at this point I guess I am worried. Also, I have 3 grown children and need to tell them about my diagnosis. I am trying to get them all together at the same time to tell them so I only have to deal with that once. I am so glad I found this support group. I really appreciate hearing your story and any helpful information you can share and thank you.

24 Replies

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  • Welcome Denise,

    You've found a community with nearly 6,000 members, of which about a third are regularly active, so I'm sure you'll find many who can identify with what you are going through right now and with whom you can interact via posts and Private Messages. If you look through the pinned posts, at the bottom of the list you'll find some resonating posts from newly diagnosed members. healthunlocked.com/cllsuppo...

    (The pinned posts are to the right on a computer and at the bottom on a smartphone/tablet, but I've given you a link for ease of access.)

    With regard to your flu like symptoms, fatigue accompanying such symptoms can be due to CLL, or to our bodies struggling to fight off infections, which gradually gets more difficult as we progress with the disease. Again, there are tips on how to reduce our risk of infection in the Pinned Posts section. It also helps if you are able to share your blood test results (as for a copy each time), in particular your neutrophil count (part of the standard blood test) and your immunoglobulin counts (IgA, IgG and IgM). The latter aren't usually a problem until many years of living with CLL.

    Expect it to take some time to get used to living in the Watch and Wait phase - it took me around 2 years, but I'm now in my 9th year. May your wait be at least as long.

    Neil

  • Hi Denise, I'm sorry that you've had to add another chronic condition to your existing chronic medical conditions, albeit a one that has very scary connotations and must be causing you a lot of worry at the moment. You're right in that CLL isn't created equal and we can experience it very differently. It's interesting that many people do suffer long term systemic inflammation leading up to the CLL diagnosis and I'm one of them. I also have a painful joint condition amongst other delightfully named co-morbidities. It's important therefore to make sure that we don't attribute every ache, lump and bump to CLL because there's a tendency to do so early on.

    It could be that you are at a very early stage and it could be years and years before CLL causes you too many problems or thought of treatment. To that end be careful about not creating too much immediate fear when you tell your kids because they will suspect the worst. I didn't disclose to all but a few friends for the first four years and even now many of my very closest relatives don't know. It's different with adult children and whilst you may need their support, be sure that you understand and have come to terms with things yourself before having the 'big conversation'. It's not an occasion to plan the will, it's an opportunity to safeguard the future. Treatments are good and improving all the time. Doom needn't be on the agenda.

    Neil has given you great advice and you'll find the support, knowledge and cameraderie on this site very reassuring. Fire away with any questions. Keep in touch and use this resource so you never feel alone with what can be a very baffling condition initially.

    Warm best wishes,

    Newdawn

  • Excellent advice from you and Neil as always but I like the phrase you used and it should be book marked "it's not an occasion to plan the will, it's an opportunity to safeguard the future". Well put!

  • Hello and welcome Denise. My husband was diagnosed almost 2 years ago, at the same age as you. Thankfully he is still on W&W and symptom free.

    We were vet very confused with this diagnosis of CLL, the words cancer and leukaemia jumping out at us, and leaving us devasted. I completely credit finding this forum of welcoming and informed people for helping us through the dark days after diagnosis. It has taken awhile, but I know think I can comfortably explain CLL to others, without scaring them as we were at first!

    I so wish I had found this site before telling our two adult daughters. We could have better explained CLL to them. On the other hand, they are our family and knew something was wrong.

    We have since only told those near and dear to us. How and who you choose to tell is a personal decision. Neil mentioned that it took him about 2 years to process everything, and that is accurate in our case as well.

    Please don't hesitate to ask any and all questions here! You'll always get answers and a shoulder to lean on.

    Take care!

  • I think we all can relate to how scary hearing those words are and the early days. I heard them 10 years ago and by all prognostic markers I should have been treated by now.

    You're right though. Every story is different but you're among friends all walking the same path.

    Just get through these early days. You'll find your peace with this soon. Meanwhile ....Stay positive

  • Thank you Todd, that's exactly what I'm going to try to do. And thanks for responding to my post! Thank you

  • Welcome, Denise. My best advice is to find a CLL specialist before your condition worsens. It makes a world of difference speaking with a CLL specialist now so you can explain your health concerns. You will be much more able to understand your condition so that you can explain it to your children. I have four adult children and they understand CLL and are comfortable asking me about tests, medications and prognosis. We're here for you. Kind regards, Sally (USA)

  • Thank you so much Sally! That is such great advice. Thanks for responding to my post.

  • Hello Denise. I hope you will find good informative help and advice from this group as I have done. The first news is a shock and 'watch and wait' is a difficult concept but I am gradually getting used to it - grudgingly! I am not qualified to comment on the more detailed medical aspects of CLL - there are lots of fantastic people on this site who are able to do this. But and this may not be the right decision for everyone - I have chosen not to tell my two adult daughters, yet. I have told my husband and close friends, but apart from husband probably did not need to. Some friends urged me to tell my children but my reasoning was that, luckily, as I am still at Stage A W&W no symptoms (bit tired) I did not want to worry them unduly. And they have had two years in blissfull ignorance! I tend to think all aches and pains are CLL related but in my case I am a bit past it - 67 - and somewhat out of condition. I am sure you will get lots of support here. Best wishes. Liz

  • Thanks do much Liz. I guess it's just going to take me some time to get used to the fact that I have this disease. My husband feels we should tell our kids, but I actually really don't want to. He thinks they will be upset and mad if we don't. I think he worries about me, and knows I don't feel well. Thank you for responding to my post and best wishes to you also.

  • Hi Denise. I was diagnosed about 4 years ago and have been on W&W since then: not requiring any treatment. At first I used to check all my lymph nodes daily for swelling and would be very anxious about blood test results!! But now it is background noise in my life even though I find it hard to be "in limbo". You do get used to it after time. I told my adult children and a couple of close friends straight away, making sure they were clear about the potential non arrival of treatment time. I am glad I did, because having someone to talk to about it has been great. You were lucky to find this forum (as I have been) because it is very supportive and informative. Good luck, Kaye (Australia).

  • Thank you, Kaye. I look forward to finally getting used to this disease and not worrying so much. Thank you for responding to my post. I really appreciate it. And I am so happy I found this website.

  • Hi Denise I can't add much to what others have said here but I know how you feel. The terms cancerand leukaemia sent me into shock and the will planning frenzy. Like Neil it took me a few years to come to terms with the fact I was not dying and to understand my condition sufficiently well to guide future treatment decision I might need to make. I would have been lost without this website and a good specialist CLL team I am fortunate to have. I believe about 25/30% of people never need treatment and remain on watch only. I hope you are one of the lucky ones. If not the treatments today have improved tremendously so I try not to worry too much. It does take time to process the shock of your diagnosis so give yourself time there is light at the end of the tunnel.

    I did tell my adult daughter and she has been great she follows this website and we discuss the content together

    Here is wishing you all the best.

    Ann

  • Thanks so much, Ann for the information and your kind words of encouragement. I'm so glad I found this website.

  • No problem Denise take care.

    Ann

  • Hi Denise, I see you have a few issues. It is hard I know with all your illnesses and having been on w and w for 6 and a half years myself and only last week having to start taking an oral chemo drug. I know how hard it is to tell children. When I as diagnosed my older daughter was 6 months pregnant with her first child. The younger daughter had just married. So I bit the bullet and waited till the baby was born then waited another 6 months till my daughter's hormones had levelled off and then I told both girls at the same time. Of course they heard the word leukeamia and not the words chronic lymphocytic and that was a bit of a shock till they listened and heard the word chronic and that this is generally such a slow acting disease and then they calmed down. So you are right to get all your children together and tell them in a gentle manner. They will be ok. May I suggest you tell your doctor you want to be seen and monitored by the specialist now. Specialist because every one with cll is different will tailor their care specifically to you. General practitioners are ok but they do not know and do not have the experience of a specialist. As a retired pharmacist this is my advice. Good luck and hope you feel better. Cheers

  • Thank you so much for your kind words and support. I am going to talk to my primary care about seeing a specialist at my next visit next month. Thanks again for responding to my post.

  • Hi DeniseQ, I am in the exact same situation except I am 78, a young 78, and male. I also have 3 grown children, I just told one of my sons he was quite shocked and thought I should share it with my other children as soon as possible. I just found out last week. I am a widower. My wife passed away 11 years ago at the age of 48 so I am feeling a bit alone. I haven't yet seen the specialist.

  • I sure hope everything goes well for you. My understanding is that this is a slow progressing disease. I am on the wait and watch. I am still trying to learn more about it. This website offers a lot of support.

  • I agree you should see a specialist (Hematologist/Oncologist specialist in CLL). I have been on W & W since March 2016 and was initially scared to death. You will settle down and relax after you learn from others with CLL & the many sources online such as CLL Society (cllsociety.org) and LLS (Luekemia and Lymphoma Society--LLS.org). You will also learn you may be one of the lucky ones and never need treatment (20 to 30%) in your lifetime. You don't have to wait until something happens. You may be able to help protect yourself from further problems by making changes in your diet (eating more plant based foods like fruit & vegtables) and lifestyle (exercise daily). I suggest you contact a cancer dietician for guidance or google nutrition and cancer prevention. I'm currently getting guidance from cancer dietician. Don't expect your Doctor's to help you with this, they are not trained nor are they interested. Welcome to healthunlocked. We will all help you understand and guide you.

  • Hello Denise. I was diagnosed in November 2015, Had 4 cycles of treatment and am clear for now. I have catalogued my journey from beginning to present day. Please feel free to browse, as you rightly say everyone is different & respond differently to treatment. Hope my account is of some help to you.

  • Hi Denise,

    I am 61 and was diagnosed a year ago. It took many months to come to terms with this cancer. I used to think about it first thing every morning and last thing every night. Now I remind myself maybe once a week. I am stage 0 W&W diagnosed at routine blood work.

    I am told I have indolent disease. WBC count has stayed at 21 for 6 mos. was 16.0 three years ago but wasn't diagnosed at that time. So probably have had for 4+ years. No symptoms. All other blood is normal.I went to an oncologist/hematologist immediately upon diagnosis. Had to know what I was dealing with. I was very scared with the info I was finding online- until I found this site. I used to check it every other day. Now about once a month.

    I have not told my adult daughters yet. I will when it is necessary. I do not want them to make life decisions based on my health. Both just recently married. Not sure if they will be angry with that decision..... but I just can't do it.

    My advice- stay as active as you can. A healthy metabolism is important. Get your vitamin D level checked. Not sure where you live but here in Wisconsin USA the winters are long and dreary. I take a high level Vit D supplement. Important for immune system function. But always check with doc.

    I wish you well, and continue to investigate on this site and others recommended by our fellow CLLrs.

    Patti

  • Thank you. Patty.

  • Denise - I am currently a CLL patient, but was once the young adult child of parents who chose not to tell me about a medical diagnosis and treatment for my father until later. It left me, not angry, but very fearful that they would hide other important information from me. I addressed this with my mother after about a year of stressing about it. My advice, coming from that perspective, is to take a little time to process the diagnosis yourself and then tell your children. You could use the wording chronic blood condition before specifying CLL. I think that I got that, like many other things, from Chris (CLLCanada). If you are in the US or Canada you might want to order copies of the LLS.org booklet about CLL so that you all have the same reference. I believe there are similar publications in the UK and Australia, and probably elsewhere. Or (I'm old fashioned and like printed material) have them pull out their smart phones and walk them through going to the CLLsociety.org site or LLS.org site - same idea of having a common source of information when you have further discussions.

    I like to think of CLL as a good reminder that we all need to have our affairs in order. My parents had their living trust drawn up when we were young and updated it periodically. There was no need to rush through the process when they were ill. It isn't something to try to do immediately after diagnosis while your head is still reeling, but something to consider once you settle into your new normal.

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