Worried wife

HI, my husband was diagnosed in July as having CLL. We were initially told it was a low grade cancer following a biopsy of a lump in his neck, and referred to a Hematologist. He told us he thought it was CLL but at that point hubby hadn't had his scan (the scanner had broken). We were given an appointment for 14th September as by then the scan results would be in and hubby had to have a blood test prior to this meeting. Then he was asked have a bone marrow aspiration and biopsy at which time he was told this would just be used as a base line for future treatment, and a possible drugs trial was mentioned. Anyway at the appointment with the hematologist yesterday we were told that a meeting to discuss possible treatment hadn't yet been held following results of the biopsy but the blood test results were entirely normal (we have had a copy and all the results are in the right parameters) but CLL was present in the bone marrow. The consultant seems concerned that the nodes in hubby's neck may be pressing on arteries and his although he doesn't have any discomfort, and that for cosmetic reasons they may start treatment.

I am sorry this might be a long winded post, but want to give as much info as we can. Hubby is well, walks several miles a day, drinks 3 - 4 nights a week, more than I would like him to but not so he is 'drunk', eats well and feels absolutely fine. I am concerned because the consultant says he is at stage 4, does this mean its bad? I know the staging for CLL is different than for other cancers, but as far as I can unless the blood levels are affected it should be stage 3? Is it because of the bone marrow, and if in the bone marrow is this bad? Some of the nodes seem large too at 4 cm.

Sorry to witter on, but I think the main worry I have is - is stage 4 and the fact some nodes are large and CLL is in the bone marrow something to cause concern? The consultant seemed to be very cagey and didnt really answer these questions, wanting us to wait until after they had a meeting but the longer time goes on the more we are worried.

There are some lovely people on this website by the way, truly kind.

19 Replies

oldestnewest
  • You are absolutely correct about stage 4 being different with CLL (or in your husband's case SLL because there are no CLL cells in his blood) than other (acute) cancers. I suspect your husband has slipped into the stage 4 category because of the large nodes and bone marrow involvement.

    If you haven't yet done so, read this pinned post about the "difference" between CLL and SLL:

    healthunlocked.com/cllsuppo...

    Because SLL is hidden and nodes can be quite large by the time it becomes obvious, patients with the SLL presentation of CLL/SLL are more often diagnosed at stage 4 than those diagnosed with CLL.

    Depending on whether the enlarged nodes are in sensitive places (which obviously may be the concern for your husband) and how the bone marrow involvement has impacted the bone marrow's ability to make blood cells, your husband may not need treatment for many years yet or fairly soon. (FYI, I was diagnosed with stage 4 CLL/SLL 6.5 years ago with 55% bone marrow involvement and a very low level of CLL cells in my blood and I'm still untreated.)

    What's most important is that your husband is fit and feels well. I suspect his level of bone marrow involvement and what blood lines if any are affected plus the placement and size of his lymph nodes are complicating the decision on whether to treat and if so how. Perhaps that meeting is to decide if your husband can get by without a full treatment. For example, if his marrow is still performing satisfactorily and he only has one or two troublesome nodes, he could be able to defer full treatment by having radiation treatment on the enlarged node(s) to shrink them or perhaps treatment with just a CD20 antibody like Rituximab or Ofatumumab. His regular walking should make it easier for him to handle treatment if that is deemed necessary too.

    Neil

  • Thanks Neil, thats helpful, I hadn't thought it might be SLL rather than CLL it makes more sense now. I have read lots of posts on here and there is so much positivity, its just so many only seem to be at stage 0 and watch and wait.

  • Hello Jenferdog

    I am also at stage 4 .I have been on Ibrufinib since May as a first line treatment .Im doing well .

    Hope your husband gets sorted .

    Brenda ☺️

  • I don't really have any knowledge to give you (but there are lots of people here that do) But I do have a whole lot of understanding. Almost 5 years ago my husband was diagnosed with CLL because of a lump on his neck. He had a bone marrow biopsy and was at stage 4. We lived a really good life those years, traveled, scuba dived, enjoyed our red wine. Other than being a little more tired than usual and a growing lump we really didn't see much change. Although wbc and lymphocyte count continued to increase his rbc and platelets remained in normal range. Treatment just now started due to increased spleen and loss of appetite, hence weight loss and increasing lymph nodes. I guess the moral of my story is to not panic, find good doctors that you trust and make the most of every day, it's really all we can do. (other than I am always pushing nutrition at him :) )

    Also our dr was concerned about his enlarging lymph node on his neck, it grew out and never caused problems with voice, nerves or sore throat.

    Reading your story is like reading my own. Wish I could do more for you because I so understand that feeling. Reach out anytime :) So many people here are here for you!

    Hugs, Jules

    P.S. After 2nd round of FCR it's going really well so far. And no more lumps :)

  • Thank you Jules, I feel like I am constantly on this website trawling for information. He has had a call today from the hematologist to say they have had a meeting and now recommend treatment with a trial drug. I want to know why they have decided to start treatment so fast but think the answer will be because of the swelling in the neck. He has to go and meet a more senior consultant - no date yet - to discuss so hopefully more questions can be answered then. Best wishes to you and your husband and glad things are going well, its good to hear positive stories.

    Sue

  • Hi Jenferdog

    I'm just a patient, but it sounds to me like your husband is presenting with the SLL , small lymphocytic lymphoma, form of CLL...with enlarged nodes, but normal blood work.

    To complicate matters, SLL is staged using the Ann Arbor system used in lymphomas, not the typical CLL Rai or Binet... they are quite different.

    lymphomation.org/stage.htm

    So, if he has bone marrow involvement then it would be Stage IV...

    SLL is a bit tricker to stage than CLL, because of normal bloods, but it is treated when the time comes exactly like CLL, with similar results...

    In CLL Stage IV is pretreatment , but this is not necessarily the case in AnnArbor.

    There are a number of SLL ppatients on this form and I'm sure they will add thirr experiences...

    ~chris

  • Hi. I have no words of wisdom for you but just wanted to agree with your comment about people on this forum. It's always such a comfort to be able to post on here and 'be yourself'. It's a comfort to both have the knowledgeable replies from people who have undergone treatment themselves and support from everyone even if they haven't reached that point themselves. To me, the experiences of others make the future a little less scary because at least we are armed with a little knowledge. For me, at diagnosis, the worst part was the dreadful fear of the unknown. I feel that at least now I am going into my future with a realistic attitude rather than overly optimistic (although I remain hopeful) or pessimistic one. I will be forever grateful for the help I continue to receive from everyone.

  • Just a quick update:

    He has had a call today from the hematologist to say they have had a meeting and now recommend treatment with a trial drug. I want to know why they have decided to start treatment so fast but think the answer will be because of the swelling in the neck. He has to go and meet a more senior consultant - no date yet - to discuss so hopefully more questions can be answered then.

    Thanks for the replies love to all.

  • Good luck to him. I suspect it was the swelling in his neck that kick-started his treatment. On the 2 occasions I've seen the Dr's they've always made it clear they treat symptoms & not counts etc., so hopefully early treatment will lead to a good outcome.

  • Find out the name of the trial drug and search for information about it on this site. You should find information from CLL experts about the drug and what side effects to expect along with reports from members of their personal experience. While it's understandably a bit scary facing treatment, the good news is that by gaining access to a trial drug, your husband will gain access to a drug that is at least as effective as current treatments, is most likely non-chemo and likely has less side effects. Also he will be very closely monitored so the researchers can collect information on how patients perform on the new drug. It's a fact that patients on trials on average do better than patients on the same drug after it's approved.

    Neil

  • Hi jenferdog,

    I am a 49 year-old male with SLL. In many ways it is similar to CLL, but in one or two important areas it is not. The most notable difference is the nodal involvement - many CLL patients have nodal involvement, but it seems SLL is more pronounced, causing decisions to have to be made more quickly.

    I have had a lump under my armpit for three years which has grown slowly and is now the size of a tennis ball! It is this node which has caused me to be treated, on the basis that other ones, which cannot be see, must have enlarged too. It seems must faster than the average CLL patient to treatment, and generally, I think it is.

    A friend of mine presented with lumps in both armpits and was treated immediately because of the concern for his vital organs. I t doesn't mean the disease is more progressive; it just fills your nodes instead of going round in your blood.

    Best of Luck with consultations,

    Just ask if you want to know more

    Regards,

    zentangle

  • Thank you that all makes sense. Hope you are doing well.

  • I am thanks. It's confusing because so few people have SLL.

    Regards

    Zentangle

  • Dear Jenferdog,

    Alcohol is a real "no no" for CLL. Is there any chance you could persuade your husband to stop? I know this will be hard but a big mug of hot tea is a great substitute. If he is not a tea drinker you could try sparkling water with a lime or an olive just skip the booze. You could sweeten it with stevia, ice and a little fresh fruit juice for flavor whatever he likes.

    Good luck,

    Kathy

  • Hi Kathy,

    After witnessing the damage to individuals in my university days resulting from alcohol consumption, I decided not to drink alcohol. However I recognise that many of us do enjoy its use responsibly. I'm not aware of any specific studies showing that alcohol consumption is best avoided if you have CLL and while it won't change my alcohol consumption - most of which gets used on my hands for cleaning! :) I'm sure there are many in the community that would appreciate a reference on why 'Alcohol is a real "no no" for CLL'

    Chris/Cllcanada recently published this 'sobering' post about a recent study showing that "Drinking alcohol does not result in a net health benefit and, in fact, increases the risk for alcohol-related cancers by 51%, according to a study of almost 115,000 people from 12 countries.'

    healthunlocked.com/cllsuppo...

    While that study was not restricted to CLL patients and resulted in only two replies, I suspect that very few of us that do enjoy alcohol will be dissuaded from drinking it, figuring that the pleasure is worth the risk, even when we are aware that we are already at a greater risk of secondary cancers from our CLL. I can see that there could well be advantages in reducing alcohol consumption to be kind to our livers so that we can manage treatment better, but it's not something that I have researched, not being relevant to me.

    Perhaps this is a topic our community should discuss more?

    Neil

  • So for me it has been important to change the red wine that I was use to drinking socially before CLL. The lymph glands in my neck would instantly react by being sore and swollen and hurt after a few glasses. Even red wine with it's touted resveratrol benefits was hard on my body. I just gave it up in favor of feeling better. Since I found out I have CLL I have tried to "clean up my act" and do better in all areas of health and nutrition but it is a struggle. You are right we are all individuals and if a drink does not bother someone that is their call. I would love to know if any one else has noticed a connection between red wine/drinking and lymph pain and swelling? As you say we are all unique. I send Jenferdog and her husband all my best I was just trying to help with love.

    Kathy

  • Hi Kathy and Neil, and anyone else who has commented on this thread, thank you for your help support. I understand the reasoning behind what you have said Kathy, and to be honest I would also love to hear anyone else's opinions on whether or not alcohol helps or hinders. My husband would take a lot of pursuading at this point to stop drinking, it doesn't affect the nodes in any way at the moment.

    We are seeing a different consultant next week, in Blackpool by the name of Dr M Gray and he will need to be prepared for a barrage of questions, one of which will be about alcohol. Does anyone know of him by the way? REading these posts I believe that it is important to have a consultant who is has a lot of knowledge of this condition.

  • Hi Jenferdog,

    1) I recommend you submit a question to our community "Does alcohol help or hinder with your CLL?" I expect you'll get plenty of responses!

    2) Research confirms your comment "that it is important to have a consultant who is has a lot of knowledge of this condition" In 2011, Mayo Clinic researchers published a paper that assessed the impact of the consultant's CLL expertise on CLL patient life expectancy. Not surprisingly, the research found patients went longer before starting treatment and also lived longer if they had a CLL specialist:

    onlinelibrary.wiley.com/doi...

    From the study Results: "Among 1309 newly diagnosed patients with CLL cared for between 1999 and 2009, 773(59%) were cared for by CLL hematologists and 536 were cared for by non-CLL hematologists. Among early-stage patients (Rai 0-I), median Time to First Treatment (TTFT) (9.2 vs 6.1 years; P < .001) and OS (10.5 years vs 8.8 years; P < .001) were longer for patients cared for by CLL hematologists. For all patients, OS was superior for patients cared for by CLL hematologists (10.5 years vs 8.4 years; P = .001). Physician's disease-specific expertise remained an independent predictor of OS after adjusting for age, sex, stage, and lymphocyte count at diagnosis. Patients seen by a CLL hematologist were also more likely to participate in clinical trials (48% vs 16%; P < .001)

    Neil

  • Thanks Neil I will do as you suggest regarding point 1 and have done some research and found this about Dr Grey so I am confident that when we see him, he should know what he is talking about! Blackpool Teaching Hospitals, Lancashire Teaching Hospitals and University

    'Hospitals of Morecambe Bay Haematology MDT. There are two sections of the MDT

    meeting and each section is chaired by a different Clinical Lead. The Lymphoma, Multiple Myeloma and other lymphoproliferative disorders such as Chronic Lymphocytic Leukaemia section is co-chaired by Dr M Macheta and Dr M Grey.'

You may also like...