CLL Support Association
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Newly diagnosed with CLL

Hi everyone, this is my first post!I am a healthy 57 year old woman and have recently been diagnosed with CLL. I presented to my GP with swollen neck lymph nodes, I was referred to hospital where blood tests and CT scan revealed I have enlarged lymph nodes in my neck, armpits and groin. My bloods are ‘Lymphocytosis 16’, otherwise normal, peripheral blood cell markers confirm B cell CLL.I had a lymph node biopsy and get the results of that next week. I have drenching night sweats about once a week, which I had put down to menopause, although on reflection I think I was through the menopause some years ago.

Since I was told I have CLL I have gone through all sorts of thoughts ... from denial to wanting to know everything about it! I think I’ve come to a place somewhere between now and am focussing on what’s going on with me.

I’ve already been told there’s nothing urgent from the treatment point of view, however I am confused as I’ve read that generalised enlarged lymph nodes puts my CLL at stage 2 requiring treatment. Can anyone shed any light on this?

I’m preparing questions for my next appointment when I get the biopsy results, any thoughts on useful questions to ask that I might not have thought of?

Many thanks, it’s very reassuring having this forum to share thoughts and experiences.

Angela

34 Replies
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Welcome Smiley60 to a friendly fact rich forum!

UK Sparky

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I like your opening that you are "a healthy woman" with a CLL diagnosis. Great attitude!

Throughout the period from my diagnosis 6 years ago ... through the Watch & Live period ... through a clinical trial for my first treatment ... and now on Ibrutinib, one of the new targeted therapies, I have always maintained the attitude that I am a healthy woman who happens to have a chronic leukemia.

To help the process along, I remain physically active at 78, eat a plant-based vegan diet with a minimum of sugar and carbs, live as spiritual a life as is possible in this day and age, and engage in yoga, meditation, tai chi, and chi gong.

I am also fortunate that my body has accepted the medications with mostly grace.

Friends tell me I look great, and healthy, which perhaps belies the invisible condition of my lymph system. Truth is, I feel great!

May you continue to live your life to the fullest extent possible throughout your journey, and to feel that you are a healthy woman who happens to have an immune system that has entered the wrong playground.

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Thank you so much for your encouraging and positive words, I really do appreciate it. I will go forward on my journey with strength and positivity, it’s lovely to know that there is such a great supportive community out there.

Wishing you all the very best.

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i feel exactly as you do...prior to CLL diagnosis, yes considered myself as a healthy woman. The primary care dr said that to me as well. I felt the entire body hot sweats and thought it was menopause related. Now these sweats happen daily. It's debilitating. I can't even dress in the a.m. In the event, I'm developing a new team of physicians who specialise in CLL. My current hemo/oncology MD says there is nothing that can be done to remedy the full body sweats ....will let everyone know how it goes...in the mean time..be strong.

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When I am filling something out that asks " how would you rate your health?" I never know how to answer...

Virginia

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Thanks for sharing your experience so far Emma, good luck with sorting out the body sweats, feeling a lot of strength and support from this great community.

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I too have had these sweat sessions. And mine were not only at night.

It is not only uncomfortable but very embarrassing. Every group function or family gathering, I would be soaked.

You might want to try acupuncture. I went to 5 sessions, and it has almost completely eliminated this. I still have periodical night sweats but no where near the intensity before the acupuncture. Hope it will help you as it has myself.

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THANK YOU so much for the acupuncture suggestion. I will definitely look into it. Hopefully, my insurance will cover this! I'm willing to try just about anything at this point. The night sweats, I don't really care. It's the unpredictable full body heat and sweats and clammy skin that is debilitating. Will keep everyone posted. So happy to have found this amazing group of support!!!

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Acupuncture helping me as well!!

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Hello-

If you’re interested in remedying to hot sweats, I have a suggestion. I am in the middle of menopause with my husband having cll. I have been using the Young Living Peppermint Essential oil to remedy them. It literally takes 2 minutes for the oil to work. It cools the body by applying it to the back of the neck, on your arms, bottoms of feet, and anywhere else you would feel it would help. It will also a naturally alleviate any inflammation.

I hope this helps

I love starsafta’s outlook & path she has chosen. it’s one I also continue to follow to be healthy and to support my husband.

Sweet blessings

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Hi Angela, and welcome! I think in general lymph node enlargement alone is not considered a reason for starting treatment unless the enlarged nodes are causing pain, discomfort, difficulty eating or swallowing, or pressing on some vital organ in a bad way. I am sure other people with more info will chime in.

It's very important to get yourself set up with a CLL specialist as soon as possible, and before you start treatment. Even a general hematologist will not be as useful for you as an actual CLL specialist. Many of us have to travel out of town to see a CLL specialist, but it is worth it in the long run.

Good luck!

kim

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Thanks Kim, that’s really encouraging. And yes, I’ll do my best to seek out a CLL specialist, thanks for that nugget of advice!

All the very best, Angela

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Welcome!

Further to PlanetaryKim's reply, nodes need to be greater than 100mm/4 inches in the largest dimension to trigger treatment. Staging is NOT the means by which treatment is indicated or I would have been treated 9 years ago, when I was diagnosed in stage 4. I'm still in watch and wait.

The factors that specialists consider in deciding whether to treat are covered in our Pinned Post: healthunlocked.com/cllsuppo...

Neil

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Thanks so much for sharing that Neil, what a great community this is! Feeling reassured, all the very best,

Angela

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Welcome aboard Angela...I was a healthy 54 year old male when I was diagnosed with CLL in September 2014. I too observed swollen lymph nodes on my chest. I went to my GP who had me do a blood test and discovered my WBC was 27. He then referred me to an oncologist. When I visited the oncologist a week later my WBC was 34. He then sent me to Oregon Health Sciences University (OHSU) for a second opinion. OHSU then had another lab performed and biopsied lymph node in my neck to determine I had CLL. I received my official diagnosis in November 2014. They asked me to return in 60 days to see what my WBC would be. When I returned in mid January 2015 my WBC was 90. I was then referred to FCR chemo treatment in February 2015. I managed to complete 5 of the 6 FCR treatments. My neutropyhil count dropped so low that I ended up with an infection. The oncologist didn't think the risk out weighed the reward. After about 2 years my WBC began rising and then on April 2nd 2017 I began taking Ibrutinib.

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Pilantd

How are you doing on your IBRUTINIB?

My husband had FCR April, May and June. Had to stop in July. Platelets too low. September began Ibrutinib. He has some stomach issues and a leg cramp some. Now using Gatorade.

All in all he feels great.

Hoping you are too.

Farrpottery

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Thanks! I'm doing well on IB. My primary issues are fatigue/stamina and finger nail chipping. My Absolute Lymphocyte Count is now within the normal range for the first time since last March. Therefore, I'm feeling a lot more hopeful.

When I began taking IB I experienced some leg cramping or tired legs a long with tiredness and some muscle and bone ache. However, once I learned to drink at least 64 oz of water per day those side effects subsided.

I'm sorry to hear your husband's FCR was aborted. It would've been great for that treatment to provide him a period of remission. Anyway, It's good to hear your husband is able to manage the IB side effects.

I'm wishing the best for him.

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Pilantd,

Good to hear your successes.

My hubby has the chipping nails also. All in all after 4 and 1/2 years of extreme fatigue and two failed chemos...Ibrutinib feels like a remission. He went from sleeping 15 hrs a day to getting up in the mornings with energy and enthusiasm for the day. We are so grateful and hope this lasts a long time

Thank you for your response wishing the best for you Hope that you regain your strength and stamina to a satisfactory place

Thanks again and have a blessed holiday

Farrpottery

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Hi smiley60 welcome to the site your positive attitude will serve you well with this condition. You are right to take questions with you to your appointments. I always take someone else with me too as no matter how well prepared you are it can be anxiety provoking and another pair of ears or even a scribe to take notes leaves you free to concentrate on talking to your CLL specialist. Good luck.

Ann

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Great suggestions. I always record my sessions with my oncologist on my iPhone, so I can replay them to refresh my memory.

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Good idea thank you.

Ann

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Hello Angela. Welcome to the family, a wealth of knowledge & support.

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Hi Angela,

Nothing to add medically, but what has worked for me is being informed, living my life fully, and getting the best care. I was diagnosed at 47, treated 6 months later, and still on treatment. I’m doing well, but still have residual disease. Except for a persistent small rash, I don’t feel the least bit sick. Hope this helps.

Ellen

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Thank you for sharing your experiences Ellen, sending you very best wishes.

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Hi Angela and a warm welcome to you.

You’ve had some excellent advice but I just wanted to specifically answer your question in staging because you seem to be from the U.K. where the Binet staging is used. I suspect you have been looking at the Rai staging which is more commonly used in the US. This explains;

This system divides CLL into 5 stages:

Rai stage 0: Lymphocytosis and no enlargement of the lymph nodes, spleen, or liver, and with near normal red blood cell and platelet counts.

Rai stage I: Lymphocytosis plus enlarged lymph nodes. The spleen and liver are not enlarged and the red blood cell and platelet counts are near normal.

Rai stage II: Lymphocytosis plus an enlarged spleen (and possibly an enlarged liver), with or without enlarged lymph nodes. The red blood cell and platelet counts are near normal.

Rai stage III: Lymphocytosis plus anemia (too few red blood cells), with or without enlarged lymph nodes, spleen, or liver. Platelet counts are near normal.

Rai stage IV: Lymphocytosis plus thrombocytopenia (too few blood platelets), with or without anemia, enlarged lymph nodes, spleen, or liver.

Doctors separate the Rai stages into low-, intermediate-, and high-risk groups when determining treatment options.

Stage 0 is considered low risk.

Stages I and II are considered intermediate risk.

Stages III and IV are considered high risk.

These risk groups are used later in How Is Chronic Lymphocytic Leukemia Treated?

Binet staging system (UK)

In the Binet staging system, CLL is classified by the number of affected lymphoid tissue groups (neck lymph nodes, groin lymph nodes, underarm lymph nodes, spleen, and liver) and by whether or not the patient has anemia (too few red blood cells) or thrombocytopenia (too few blood platelets).

Binet stage A: Fewer than 3 areas of lymphoid tissue are enlarged, with no anemia or thrombocytopenia.

Binet stage B: 3 or more areas of lymphoid tissue are enlarged, with no anemia or thrombocytopenia.

Binet stage C: Anemia and/or thrombocytopenia are present.

You’ll see from this explanation why you’re Stage A. Hope that helps.

Best wishes,

Newdawn

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Angela,

Your reaction is similar to mine. I’m a male 66 in good health and diagnosed a few months ago. I may have had it longer since my doctor found an old lab test showing elevated white cell blood count. I’m told I don’t need medication and researching dosages for green tea capsules and turmeric. I’m not sure at what stage medication kicks in. The issue is how fast CLL progresses. Some on this board have had it for years and still don’t require medication. Others are diagnosed and go straight to a range of medication.

Like for so many things, I think a positive attitude is critical.

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I (81 years old woman) too have CLL and have (knock on wood) successfully kept it from growing for the last 4 years.

After being diagnosed, the doctors did not want to use chemo or any regular medical treatment. I also have a virus that pops up when I get over taxed which complicated the situation and in 2012 I spent 4.5 months in bed, so weak I could only be out of bed for 20 minutes at a time. Antibiotics just made things worse because it killed so much good bacteria in the body my immune system became compromised.

About 5 years ago I received a newsletter (recommending IV vitamin C for CLL patients - source and alternative medicine practitioners edited out due to their promotion of pseudoscience-based medicine - Admin). Of course I checked out sources in my area and met with the doctor and started the I.V.s immediately with 2 visits per week. Now I go in maybe once a month and my regular doctors are astonished with the results. Of course I continue to see them with regular checkups and tests; take supplements, eat healthy (cut way back on sugar- it feeds cancer) and exercise most days.

There is another big plus when getting this much vit.C.....I look younger and have more energy than most people my age because vit.C heals the cells on the cellular level. As my urologist explained, I have a biological age (maybe 60) and a chronological age (81).

One more fact. Since I started purchasing Vit.C Lipospheric packets by "Liv-On" I can stretch out my I.V. visits.

Hope this helps.

S.

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Just make sure you have a proper CLL specialist - GPS just don’t understand this disease. I was dx at 49yrs 6 years ago, it’s been a long slow burn for me at the moment which hopefully it will stay this way for a long time. the thing is to know exactly what type of CLL you have, you need to know what is your IgVH gene mutation status -mutated or unmutated? And what is your gene deletion, this is the best way of really knowing where you stand. Your mutation status never changes but your gene mutation can.

Xxx Heidi

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The CLL Society website can be very helpful. Always see a CLL expert before any treatment for a second Opinion.

Be well

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Terrific responses. What a lovely community.

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Hi Angela! I’m Michelle and I’m 56 years old. Watch & Wait CLL. I am stage 2 due to swollen lymph nodes and slightly enlarged liver. I with you-denial and want to know Everything I can. I did go to MD Anderson in Houston, TX for a 2nd opinion and they agreed with my oncologist here and they are now my doctors too. They did so much more testing than my oncologist did and they found that I have good markers and if and when I might need treatment my body should respond well. They gave me hope and made me feel so much better! My suggestion is go to MD Anderson! You’ve found this website and Everyone is so nice and helpful here too!

Keep living and enjoying life!!!

Friends,

Michelle

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Hello and welcome. I'm sure like most of us you never expected to be here. But I know I have learned so much and have found comfort from all the wonderful people on this site. No question will go unanswered. Take care!

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Hi welcome to the community. I too was diagnosed in the last 12 months, to be honest I was grateful to have CLL, doctor probably thought I was nuts. I really thought I had Multiple Myloma. I too feel very healthy, lots of energy and whilst still working at 68, I have zero sick days compared to the younger staff working with me. I practice gratitude every night and always keep the number 94 in my mind. I do hope to make it to 94, in the meantime live the best life possible. Eat Organic, exercise and don't sweat the small stuff. I love this community, so many wonderful comments. Best wishes to you.

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Hi I am new to this post and are looking at having treatment. My lymph glands are swollen and sore under my arm pits to my breasts.

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