Life with CLL

Hello everyone,

I was diagnosed by accident while being examined for breast cancer lumps. Luckily (or not) the radiographer didn't like the lump on the side of my breast and did a biopsy only to discover that I had CLL.

My point is there are many worse diseases out there, more horrific and unbearable, we can still have a reasonable quality of life and I am nowhere near death yet! I have my private moments when I am so exhausted and bone weary that I want to just lie down and die, but it is a passing moment. What makes this so awful is that people don't understand the fatigue and waking up feeling washed out, I am also not too keen on the disfiguring lumps growing out of me because I always thought I was pretty (not so much now) Somehow, this doesn't seem as important anymore, but that doesn't mean I don't make the effort. You have to smile put on a brave face and get on with it! We have company, we are not alone and many people feel our pain, we have each other and can always communicate and be strong together.

Wishing you all strengh to cope and enjoy life.

Blessing and hope to all,

Markella

14 Replies

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  • Hi Markella and welcome to the community although I understand it’s not one we particularly want to join.

    Some very wise words there and I know what you mean about fatigue, my consultant dismisses it even though I mention it every time, maybe the Haematology community need to listen to the CLL specialists and change their view on this.

    I am sure your lumps are as beautiful as the person they adorn.

    Kirk

  • Hi Kirk,

    Thanks for your welcome and lovely words. I have been reading more and going to have myself checked for Vitamin D deficiency. It is frustrating about the fatigue and night sweats - but its normal. I know the doctors have heard it before and nod, but let them live with it and see how much fun it is. Well, we just get on with it, after all, if we complain life is still moving along and not waiting until we enjoy, so we may as well enjoy best as we can!

    Strengh to you!

    Markella

  • Welcome aboard Markella so pleased to have you and your positive attitude join us.

    Fortunately you will meet many like minded people on here, such a range of contributors that make this the helpful and successful community we are. You are right it could be worse, many of us have secondary and more life threatening cancers to deal with, but we plaster on our smiles and make the most of our lives.

    I hope you find this community as helpful as I have found it both for support and technical information.

    Best wishes and keep smiling

    Bubnjay

  • Hi Markella- I was diagnosed a year ago after a routine blood test- but before that I had a couple of occasions where my routine mammograms were followed up with ultra sound to check out lumps. I now think these were also CLL induced! This is not the greatest club in the world to join but I have found everybody here so supportive and knowledgeable- we are not alone. We all have "wobbles" from time to time - mine are always after the routine blood test which shows the WBC relentlessly climbing- that's when this forum is a great place to come. Best wishes.

    Parslow

  • Hello and welcome Markella. I admire your positive attitude that will serve you well in living with CLL. Many reading your introduction will be nodding their heads when reading about your struggle with fatigue. It's a poorly understood and often not even acknowledged symptom by the medical fraternity, but it is very real and very frustrating when you just find it impossible to summon up the energy to even get moving. If your red blood cell count and haemoglobin levels are acceptable, ask your doctor/specialist to check your vitamin D level. Quite a few of us have found that that's been low and boosting it with a daily supplement of vitamin D3 can make a huge difference. It certainly helped me.

    Sometimes just making the effort to exercise can perversely make a difference, but then again, sometimes you can barely dredge up the energy to drag yourself to a place to lie down. I found that it took me a long time to learn to live within my reduced stamina with CLL - paying for over exertion with a couple of flat days.

    Just have a look at all these previous posts on fatigue and know that you are far from alone!

    healthunlocked.com/search/f...

    Neil

  • The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for re-activation of usual childhood diseases, so here it is again.

    "Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue."

    We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...

    Both times my CLL progressed I got severe fatigue and a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

    I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights adding back some fatigue.

    In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.

    So is it CLL and an opportunistic infection?

    Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

    Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

    And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

    Paraphrased from an article at MD Anderson: Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

    Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

  • Fatigue is a very real issue and I have been very blessed with only minor skirmishes with fatigue primarily associated with anemia. When my bone marrow approached 90% CLL infiltration my Hgb went to 10 and under. This became remedied when FR made room in the marrow for better red cell production. The fatigue you speak of is much more complicated as you are aware. Curiously I have avoided that complication and it may have something to do with my good serum Vitamin D levels 30ng/mL which I supplemented to keep it at around 40-50ng/mL. It is hard to say if this level of serum Vitamin D was a factor in my good fortune to avoid severe fatigue but thought I would mention it.

    In this discussion and speculation, Marilyn Lloyd raised a very good point about metabolic conversion of D3 to its usable form. The metabolic question is applicable not only to Vitamin D but drugs and supplements in general. Is it a deficiency or a metabolic defect?

    WWW

  • Welcome Markella from Canada, the place where spring isn't always what it should be. You can get lots of information here, but at times, that too will be a source of consternation with all the conflicting results and really, lack of solid science. But you can also post your rants, your frustrations, your funny stories of what the "heck is going on now" or just hang with people you don't have to explain what's going on to.

  • Hi again,

    I picked up in one of your posts that you went to Windsor.You might be interested in going to the CLLSA meeting in Nottingham on the 10 th March -next week from 10.00 am to 16.00 hrs If you can, they provide breakfast, lunch and pm refreshments. You can hear top doctors, nurses and people with great knowledge talk about CLL I attended one meeting it was extremely helpful.If interested, please look them up and book( no charge)

    Just a thought. I am going there from London as it will be worth it.

    Markella

  • Hi Markella,

    I can empathize with your stating concern over being "... not too keen on the disfiguring lumps growing out of me ..." as I pushed the envelope on W&W (wait and watch) in an attempt to avoid chemo as long as possible. My neck became a source of embarrassment for other people not knowing how to avoid staring or talking to me about it. Little kids would point unabashedly at me and ask their parents what was the matter with me. When I consulted with the "Grand old man'" of a CLL expert, Kanti Rai who is most famous for the "Rai" staging of CLL, the first thing he did upon seeing me for the first time was to ask me if he could photograph my neck as he grabbed for his camera. My mental advantage in dealing with ugly neck was not ever being considered pretty to begin with;-)

    In spite of the spectrum of stresses brought on by having CLL I forced myself to develop the habit of practicing gratitude until it became a natural part of my daily life. You appear to have adopted this path and I wish you a most positive journey of inner growth that CLL forces us all to take.

    WWW

  • Hi WWW,

    Firstly, thanks for writing to encourage me, I like your sense of humour.It sounds like your lumps were worse than mine.In fact, I saw a lady who had 2 enormous lumps on each side under her chin, but she hadn't started chemo.She was at the meeting held by the CLL group in London.Someone suggested wearing a scarf all the time, but luckily they come and go, much like the ebb and tides of the sea.I've come to grips with one of my sins "pride" CLL took care of that, it is more of a case of enjoying life and getting on with things.So I think you are right, we are forced into growing and good people can stand and be strong for each other.

    Go well and be strong!

    Markella

  • Hi and welcome to "club"; not quite the bar at the end of the universe but one can feel that isolated from time to time. I was diagnosed in 2002, like you accidently, as part of a Wellman check up. I am long term watch and worry with thankfully very little to report. The numbers are trending up/wrong way but still stage 0. The worst part for me was the first 3-6 months. Partly getting my head around the fact I suddenly had an incurable & terminal disease with no symptoms. The other difficulty was finding words and ways to engage with third parties, our children my employer and close friends. Looking back, based on my current good health, I might have spared my children the news (they disagree and say that they would have been more hurt if I had not shared as we always do so) and I might have expected less of my employer at the time. I was "made redundant" from a senior role in an international business, my dream job, with no objectively justifiable reason. Apparently I was cancerous and therefore a weak link, potentially. Today; I have retired in as much as any active grand parent ever can and am living every week/month/year to the full. Not quite out and out hedonism because I work hard to stay physically fit; gym, cycling and walking. I used to run most days but messed that up when I fell off a ladder and needed 8/9 ops to put me back together, more or less. CLL is no cure for falling off ladders or any thing else!

    If you can stay fit, keep a sense of perspective and try to avoid becoming a CLL victim. You seem to have a good start, best of luck.

  • Hi, Thank you so much for sharing. I am so sorry that your employer wasn't understanding.Perhaps that gives you more time and quality moments with your family?

    You have given me a thought as to whether I should tell my father who is 83 years old and in fairly good health but also in South Africa.

    I aim to go in 2 weeks and he can see that I am actually quite okay (not cancerous and dying) because if I did it over Skype or phone he wouldn't see that I look well and am coping. I also fear family might think you are hiding suffering or the full truth -it's tricky. My aim is to be positive just like you are and this is a choice, also there are far, far worse cancers and diseases out there. We can live quite well and be happy.

    Go well and with strengh! All the best,

    Markella

  • You rock Markella!!! Never give up your moxy and positive attitude. As many have said before me, we are in a great scientific boom and new medications and treatments are being discovered right now. Hugs and Live!!!!!!!! Susan

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