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Hi everyone! I have been receiving your posts and wanted to introduce myself. I was diagnosed with B-CLL in January 2013. This is somewhat a lengthy post of my diagnosis but thought it may help others who have had the same frustrations.

It actually began last Sept with an ultrasound for ovarian cysts. The tech seemed very concerned (bought in a supervisor) but wouldn't say what the problem was. Being a nurse, I knew something was not right. I got a copy of the report which said complex ovarian cyst with enlarged lymph nodes in abdomen. (I was thinking ovarian cancer) . I had both ovaries removed (no cancer) by a gynecological oncologist. Had a complication (small bowel obstruction due to herniation at one of the surgical sites) which required a second surgery the next day. Everything was going well however I was still concerned about the enlarged lymph nodes. I was told don't worry it could be anything.

Once I recovered I went to my GP, a wonderful nurse practitioner who obtained copies of the ER CAT scan (which did not mention the lymph nodes). She called the radiologist who re-examined the CAT scan and said, "Oh yes there are enlarged lymph nodes, she should have a repeat CAT scan with dye. I will amend the report." I had that which recommended biopsy.

By this time, I had enlarged neck lymph nodes in my neck. Went back to the surgeon who sent me to hematologist who said we could wait and see what happens or get a biopsy. I chose the biopsy which was positive for B-CLL so I was sent back to the hematologist. Please keep in mind that during all this I am being treated a large hospital in NJ with some of the best MD's. Well I waited for 2 hours to see the hematologist again expecting a full explanation of the findings and the significance of the FISH. I had read about CLL but it was very confusing and I understood very little. He said I had CLL and there was no treatment for now-watch and wait. I wanted more information and told him so. What about ZAP 70 and the FISH results? He said ZAP 70 not reliable and he didn't have the results but I was in the middle of the 3 prognostic groups. (This didn't make sense but I wasn't even sure what FISH was or what questions to ask- I went home angry and frustrated). Back to my nurse practitioner who called and got the results. Positive for 11q deletion and CD38 positive. She did not specialize in this and I had to rely on the internet to obtain all the information.

I am currently seeing a local hematologist, who is also not very forthcoming with information but will answer questions I present to him. I am on watch and wait however have increasingly large lymph nodes in my neck, chest, and abdomen. Due for CAT scan in Dec. All bloodwork has been normal. Had bone marrow biopsy with local hematologist (he uses sedation, yeah!) which was also positive for B-CLL.

Apparently, I believe I actually have small lymphocytic lymphoma (SLL) which made the whole diagnosis more confusing as the doctors I've seen do not call it SLL. I have never been given a stage and they all relate my bloodwork results to a CLL diagnosis and say I'm in the "middle group". From what I have researched, SLL is staged liked lymphoma and I would be stage 4. I understand SLL is now "coded" as CLL because they are different manifestations of the same disease but it would be much more understandable if SLL was not lumped under CLL.

I am shocked at the lack of patient education by the medical field. You have cancer which is incurable but don't worry, we will watch and wait to see what happens! I am sure if they were in this situation they would want information. I realize some patient's may not want to know but there are those of us who do. Not knowing creates more anxiety in me personally. I want information and then I can deal with it.

I hope maybe my story will help others who are feeling the same frustrations in being diagnosed. I have not been tested for some of the newer markers but I am not even sure if they are routinely provided in the US. It's very difficult to have CLL and not have information or support and your website is very much appreciated.

The doctors seem to think it's no big deal just watch and wait. But I was diagnosed at age 50 with an 11q deletion, CD38 positive so it's a poorer prognosis for long term survival. I am quite honestly still coming to terms with the diagnosis.

I was fatigued all spring/summer but in denial. My enlarging lymph nodes which are easily palpable, have recently made me accept this diagnosis and to get involved with support groups where I can find other younger members and information on markers and treatments. I will not have more information on my condition until December but I know that my condition is progressing in CLL with 11q deletion. I am an optimistic person and am hopeful that some of the new therapies will provide a cure. I am having difficulty talking with others about this- I hate attention and especially the awkwardness and sympathy of those who know. So I really appreciate having a place where other understand.

Thank you all and I look forward to being a more active member of your group.

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27 Replies

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  • Hello Jomary and welcome to the group, though of course, I wish you hadn't needed to join; I am so glad you posted.

    Thank you for sharing your experience surrounding your diagnosis. What a dreadful time you have had. You have certainly been right through the mill and I hope that now you can benefit from the knowledge and comfort of the great people here.

    I am sure that many will relate to your story and that they will find you very soon. You are among friends here and if you have any questions, then all you need to do is ask.....

    Warm wishes

    sparkler x

  • Thank you!

  • Welcome JoMary...

    SLL and CLL are the same...

    ...

    'The World Health Organization (WHO) includes “lymphocytic leukemias” and “lymphoma” within one classification. ( a sub type of Non-Hodgkins Lymphoma NHL) Each of these cancers is the result of a change to a cell that was destined to be a lymphocyte. However, lymphocytic leukemia and lymphoma originate in different parts of the body. Lymphocytic leukemia develops in the lymphatic tissue within the marrow.

    Lymphoma begins in a lymph node, or another lymphatic structure in the skin, the gastrointestinal tract, or some other site in the body.

    Chronic lymphocytic leukemia (CLL) and small cell lymphocytic lymphoma (SLL) are often considered to be one disease because they are similar with regard to incidence, signs and symptoms, genetic features, disease progression and treatment.

    The leukemic lymphocytes and tissue abnormalities that are observed in people with SLL are identical to those observed in patients with CLL. However, in people with SLL, there is more lymph node and lymphoid tissue involvement and less marrow and blood involvement; in people with CLL, the marrow and blood are more strikingly affected.'

    ...

    You may find this booklet of help... it is current and accurate...

    lls.org/content/nationalcon...

  • Welcome Jomary,

    You certainly have come a torturous route to get where you are now with some very skilled but not communicative physicians it seems. It sounds like the Nurse Practitioner came to the rescue every time with information and clarification. It really shouldn't be like this should it?

    I'm from the UK and this makes my experience sound very simple and straightforward. Referred last May at 54 to haematologist because lymphocyte levels had been rising for some years and I was feeling under par, blood tests taken and within a very short period of time the haematologist rang me at home, I went in to see him and had the CLL diagnosis. This was followed some weeks later with a CT scan which thankfully showed little in the way of node involvement so I'm on W & W.

    It's not routine in the UK (and elsewhere I understand) for FISH testing to be done unless requested or prior to treatment so I've not had this yet.

    I'm sorry that your profile shows the 11q deletion but I absolutely agree with you when you say you feel optimistic that one of the new therapies will provide a cure. There's so much happening and CLL is certainly on the scientific radar at the moment.

    I haven't disclosed widely Jomary and fully understand your awkwardness and dislike of pity around this. Who better to share and receive support from than fellow sufferers so please use this forum. We all need each other and there's a wealth of amazing knowledge on here. Chris has already demonstrated that with his link which certainly furthered my education!

    So many supportive people on here and as a nurse we value your professional knowledge too although I realise you said you were on a steep learning curve with CLL.

    Wishing you well and offering you shared understanding,

    Newdawn x

  • I wish you well also and appreciate your understanding.

  • I would cetrainly look at getting a doctor with experience in CLL/SLL , most aren't

    Here is a list of CLL docs

    cll-nhl.com/p/cllnhl-doctor...

  • Thank you for the updated list and the above link. I know I will research the specialists and compare with who participates with my insurance.

  • Hi Jomary,

    Welcome to the site although I understand you don't exactly want to be welcomed here.

    Like others have said you are amongst friends and like minded people here and we are all learning from each other. I was diagnosed in February this year (Valentines day to be precise so you can imagine the romantic evening I didn't have !!). I have had my diagnosis but no Fish test or CT scans. Am on watch and wait with 6 monthly consultations.

    Thanks for relating your experience I feel for you especially considering you pay your medical insurance you expect answers and a decent service. Feel free to rant here when you feel the need, we all do it and we all feel better after :-)

    Take care and good luck

    Kirk

  • Thanks Kirk-My frustrations with the medical professionals and obtaining information were exasperating. I really wanted to let others know that the diagnosis can be confusing and appreciate the info on your site.

  • Hi Jomary,

    Having been diagnosed in my late 50s, and just begun treatment at age 62 after a period of well-managed watch & wait, I can tell you, from the perspective of someone on the other side of the river (from New Jersey, that is), that simply being plugged into a big hospital with lots of good MDs is no substitute for finding real CLL specialists, and preferably ones with good support teams (nurses, NPs, etc.) who are prepared to not only treat you medically in an appropriate way, but meet you at the "information level" you seek.. There are so many variations of this disease, and so many odd twists and turns that it can take, that feeling lost, in the absence of clear explanations, only makes matters worse than they need to be. In my case, it was fatigue (anemia) and skyrocketing white-cell counts that took me off W&W and on the path to treatment; but not everybody presents the same way, as your chronicle illustrates. If you feel you are not getting the straight story, don't stick around out of loyalty to an institution or even to a MD. You are entitled (not just as a nurse, with greater training than most) to the treatment and the information you need to make decisions for yourself. Cross the river if you have to...

  • Good advice. I am planning on finding a CLL specialist. I only wish physicians would send a newly diagnosed patient in the right direction to have their questions answered. It can lead to unnecessary worry. I hope your treatment is going well.

  • Hi Jomary and a sympathetic welcome to our group.

    I've taken the liberty of paragraphing your post for easier readability, though you've already had plenty of interested readers judging by the number of replies!

    Like you, I was diagnosed with SLL stage IV in my early 50's. (A stage IV diagnosis with SLL is quite common, with those with the CLL manifestation generally being diagnosed earlier as it is less hidden.) As you have no doubt discovered, Ann Arbor staging is used for SLL and Rai or Binet for CLL, though there are attempts to move to A, B, C or Low, Medium or High risk categories.

    SLL and CLL diagnoses are arbitrarily differentiated by which side of 5 (5,000 for you) your Absolute Lymphocyte Count (ALC) in your peripheral blood falls. Many with SLL go on to present as CLL as have I, but I'm still on W&W after 4.5 years. CD38 is a lower cost and easier to determine prognostic predictor (but much less reliable) than IGVH mutated/unmutated status. There is only very basic FISH testing available in Australia, so I don't know my 11q status. Active research efforts are constantly discovering better predictors and we are gradually discovering why some people with poor prognostic markers often do far better than expected. SLL/CLL is very individual in how it progresses and I'm convinced that better education gives you the edge too!

    One of the gaps this site is trying to fill is the lack of information on SLL/CLL in the medical profession. It is a relatively rare disease. A study in Australia found that doctors in general practice only saw about half a dozen lymphoma cases in their career, with SLL/CLL being only one of the more common sub-groups. Hence the importance, backed up by a recent scientific study from Mayo Clinic, of finding a SLL/CLL expert to increase your survival time.

    You've done very well finding out a great deal about your condition already, so I'm sure you have plenty of good questions to ask your hematologist. Likewise, I expect you'll find more to ask as you read the content on this site!

    This is an optimistic time for us with plenty of more effective treatments on the horizon, so thanks for joining us and sharing your journey as we close in on a cure.

    Neil

  • Thank you Neil

  • Hi Jomary 8505

    I am 42, a firefighter in the UK, and am considered a very fit person by all that know me. On August 21 I was diagnosed, after a biopsy on my arm pit, with something called SLL, I like most of us was in total shock, and had heard of Non Hodgkins Diseaese but didn't have a clue as to what it was. I had no symptoms at all, other than a swelling under the armpit, but after a CT scan I was told that I also had large nodes in my abdomen and pelvis, and for that reason would be starting FCR chemotherapy ( I never even knew what chemotherapy was). I started the chemo on September 18 , and apart from a couple of sick days I still feel as fit as normal, this whole cancer thing is still very new to me and if I am honest, still frightening and somewhat surreal. What ever your feeling your not on your own, unfortunately I still don't have a very good knowledge base on this topic but I am learning with the help of various people, including the good people on this site.

    I have found this site to be fantastic for both support and information, there really is something that is very therapeutic about writing about your problems and someone will always reply. If you would have told me this 3 months ago, that I would be sat down writing about my feelings, I would have called you insane.

    I do wish you well and apologise for not being exactly informative, but there will be someone here who can help with answers to the medical side of things. Your not on your own, we are all in this together unfortunately. Since diagnosis I cannot believe how many people I know who have been living with Hodgkins and Non Hodgkins for years!

    Its not all doom and gloom, best wishes Sparkio

  • I appreciate you sharing your experience. When I researched this diagnosis, it seemed as though there were very few younger people who had been diagnosed. If fact, several articles called it an "old person's disease" The whole CLL/SLL has been somewhat confusing but we will become more informed through this website.

    I wish you well in your continued treatments. You have been informative for me personally, it's comforting there is someone with the same symptoms since we don't fall into the typical CLL symptoms affecting the blood.. It is quite terrifying and like you said surreal, when you are told you have enlarged lymph nodes throughout your abdomen/pelvis that you didn't know where there. Thank you for sharing.

  • Hi Jomary8505,

    I also live in New Jersey and will repeat my suggestion to many new members that want better communication and care.

    Please make an appointment with Dr. Richard Furman New York Presbyterian Hospital Weill Cornell Medical Center

    525 East 68th St., Payson Pavilion, 3, New York, NY 10065

    (646) 962-2064 FAX (646) 962-1605

    Then expect to see him very infrequently (once or twice per year) and use your local hospital and docs for regular CLL checkups. He does an excellent job of explaining the disease. (He volunteered and presented an excellent explanation at the Lymphoma Research Foundation meeting in Brooklyn last weekend). When you need treatment in a few years, he can offer you a wide range of options including clinical trials for the 2 breakthrough drugs that are giving outstanding results now. But most of all you will get expert care, world class CLL research knowledge and a doctor that knows & explains the disease well.

    Len

  • Thanks Len. I actually live over the border in PA but am originally from NJ and went back there since there were no MD's here for my original problem. Having a specific MD to contact who has assisted another member is tremendously helpful.

  • hello jomary, I too had to deal with the ovarian cyst stuff and ended up having a total hysterectomy because of it. and when I went to the local hematologist he too came across as everything was just dandy. I finally went to a well known cancer center in my state and what a difference!! He was very informative. I too live in the us. it sounds like you have really been thru a lot with all this, I hope you find a top notch doctor to help you thru this. take care julie

  • Thank you!

  • Hi, Jomary,

    If you do decide to come into NYC, my husband's been very satisfied with the care he's getting at NY Presbyterian Hospital; his doctor is Nicole Lamanna, part of a group that moved from Memorial Sloan-Kettering in January. I'm glad you found this site, we won't let you down!!

  • Thank you! I most likely will be coming into NY and others have posted that they are very happy with the group there.

  • We're so fortunate to have a choice of highly-skilled resources in this area...dealing with the health insurance bills, however, that's another story :). In any case, when we settled on the medical providers, it was a big weight off our shoulders. I'm not a nurse, but I am, like you, more comfortable when I have good information. I spent many hours doing research before and after my husband came out of "watch and wait" and settled on treatment, and I felt like a huge weight was off me when our questions were answered patiently and competently. BTW, I'm a social worker and know how hard it is to be a "consumer" rather than a "provider". This site has definitely helped.

  • Hi I was DX aged 50 and am female so it was a surprise to get an old person's disease. I had FCR + M 2010/11 and at present there is no sign of the disease. Seeing an expert does make a big difference. Good luck

  • That is great news! I've heard of FCR but what is the M?

  • FCM-R (Fludarabine, Cyclophosphamide, Mitoxantrone, Rituximab)

    M - Mitoxantrone more here

    bccancer.bc.ca/NR/rdonlyres...

  • Jomary8505,

    I just read your 3 year old post, thanks to your lovely reply the other day to a newly diagnosed member. They were reaching out.

    I have many similarities with you as well as time of diagnosis, markers, etc.

    Great post and hope you are doing well.

    Jeff

  • Thank you. Yes I am doing well other than the neutropenia but that does seem to be improving slightly.

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