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need help on qol during w &w

I am male 66 dx 18months stage0, on w&w.

Yesterday was quarterly review and I am advised to come after 3 months. Doctor did not address my poor quality of life. I do not feel fresh even when i wake up. Rotton feeling as though i did not sleep and body weakness makes it difficult to go through the day. Doctor said that he will give chemo when blood chemistry poses bigger risk than chemo. He said he cannot hazard any guess on W&W duration, it can be over soon or I may never need any treatment. GP is not helping either as he blames cll for malaise. I am seeking advise/ support from the group although this topic is quite old...

Below is chart which might b useful.

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Hello vinnet, this is such a rotten and common symptom for CLL sufferers and of course there is no easy answer to it for so many reasons. I was on W&W for 10 years before I needed treatment and I had 5 courses of FCR treatment last year with a 6 lone dose of R (Rituximab). This left my blood results WORSE than prior to treatment although my bone marrow infiltration (that had been 96% before treatment) was put in remission from evidence of CLL. But I remain, 8 months after treatment, with very poor results and of course suffer with fatigue as well as poor immunity, particularly against viruses. So reason for telling you all this is, treatment is not something to be rushed into without good cause and is usually due to blood results or bone marrow infiltration.

Ways to help alleviate fatigue I have seen suggested include increasing one's exercise, which sounds counter-intuitive I know , as I usually feel like curling up and sleeping not exercising! Also, what is the actual quality of your sleep like? I bought myself a Fitbit for Christmas and it has revealed to me that I have lots of wakeful periods during the night and not very good quality sleep - that is more about stress rather than CLL.

What is the CLL reason for fatigue? Well, it can of course be anaemia, which I have currently (I need regular blood transfusions). But your Hb looks good currently. I also learnt from the very good American website called Patient Power which has a CLL section, that CLL cells give out chemicals which are similar to those given out when you have flu, and it is these that can also cause fatigue.

So I am afraid I have not been able to give you a happy solution but have only managed to share my experiences and bit of knowledge. I am sure others will answer with further advice and you could search on here for previous posts about it, as I am sure there have been loads!

Try to take the positives from what your consultant has said and I do hope you experience a good long w&w, and that your fatigue will pass soon.

Best wishes, Holly.

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Thanks Holly...

Did u go thru such malaise during your 10 yrs wait?

In fact, I am very keen to get 10yr wait and watch!!! By then, some affordable medication will be available , like ibutrinib, to manage the cll...

I Hope and pray . Also do yoga and meditation every day.

Regards

vinnet

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My reason for going to the GP initially and getting the diagnosis of CLL was because I was feeling so fatigued and also picking up too many colds etc. I think my experience of fatigue could be variable though. Although I think I just came to live with it as part of what my life was like now and ended up just ploughing on regardless.

I do pilates but not everyday. I am learning about mindfulness and the meditations associated with that. All very interesting and challenging!

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Thanks Holly2.CLL problem is that it is UNIQUE to each person.Theoretically, if even person can live energetically with CLL, EVERYONE SHUD be able to, by using proper medicines.Like paracetamol can bring down fever of every patient, or many other routine medicines for burn, cut , pain etc etc.

I am keen, if Neil or some expert can compile few actions which may have helped you and others enjoy a 10year plus W&W , it might help me and many others...

best wishes

vinnet

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Vinnet

So sorry to read about your malaise!

Looking back on your posts you have written several times about your lack of energy and the general feeling of helplessness combined with a low psychological outlook.

Yes, cll can make you totally wiped out and your GP is probably correct putting the cause down to cll.

The question is what can they or your cll medics do to assist?

Also is there anything you can do to help yourself?

I’m not sure of the situation in India with regards to obtaining medication but there have been several discussions on here about exercise helping to infuse some life back into those who feel wiped out?

Also have you got access to a councillor who can help you with what appears to be the depression you feel?

Sometimes we need help from others,my friend!

As I say I’m unsure about the facilities you have at your disposal in India but I would urge you to investigate the situation.

Also remember you are not alone we are all with you!

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Thanks Cammie for your understanding. Such support itself helps in appreciating that i am not the only one...

Onco or GP are unwilling to even recognise my malaise. They just dismiss.

What facility u refer to ?

If we have some experience/ adviseon actions which one can take to tide over this condition, it will be great.

vinnet

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I was thinking about psychological support .

The trend in the west is to treat the cll patient holistically that is understanding the concerns patients have when diagnosed and the depression that can sometimes come with susceptible a diagnosis.

We are all different!

Some just take things in their stride others suffer both physically and psychologically.

Many doctors simply treat the disease and not the patients.

There is a seed change I have seen where doctors are more sympathetic to how the patient feels rather than just looking at things like blood counts and symptoms.

Maybe this is not the case in India?

Perhaps you should discuss with your GP informing them that a different approach is taken in the West?

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Cammie

I am lucky to live in Delhi where best hospitals are. Having said that, they are overloaded and in biz of making money. Also no CLL specialists. GP will be offended if i try to give him any advise.As such they feel frustrated if u mention anything that one finds on google.

In spiritual country , like India, the ancient science of AYURVEDA has not received much attention. This science exactly reflects your view of treating PATIENT and NOT symptoms. Due to lack of scientific acceptance, I feel uncomfortable in pursuing alternatives like Ayurveda and SIGFA ( sigfa.com) etc.

Counselling is not much developed. I dont feel depressed.If I meet coinsellor once, he will ensure that i continue for indefinite period.

I do 30 minutes yoga every morning. Also one hour of meditation. Will try to add some walking and see if it helps.

best wishes

vinnet

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In the US unless you have nightly sweats, enlarged lymph nodes and or spleen enlargement with anemic low red cell counts they watch and wait also. Is their a large hospital near by with more experience with CLL patients. A second opinion does not hurt.

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Thanks Knotagoat. I am already with onco specialist in a large hospital. ( FORTIS is chain of top class hospitals )

My ONCO is not saying that I need treatment now. He says if blood parameters go below threshold , then he will give chemo. But he does not help me with my poor qol.

second opinion in another hospital is unlikely to be any different. My current onco is having a good name.

best wishes

vinnet

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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 common 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 immunodeficiency

mutated-unmuated.blogspot.c...

and his comments on fatigue:

mutated-unmuated.blogspot.c...

All 3 times my CLL has progressed I’ve gotten severe fatigue and weakness in my thigh muscles, possibly due to 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.

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 (an infant disease called Roseola) 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 my fatigue entirely.

I was on Idelalisib from Dec 2012 to May 2015 and then switched to Ibrutinib until Feb 2016 and had full strength in my legs. I was able to ski like a 40 year old (at 68 years) but after being off the drugs for 8 weeks my ALC was only 43 but the muscle weakness in my thighs returned. We have tested for all the above causes but cannot find a smoking gun beyond a drug resistant HHV-6 at log 4 x normal. I've been on Acyclovir daily since 2012, but that has no effect on the HHV-6.

I started Venetoclax in June and within 3 weeks the cramps and fatigue were gone. So for me treating the CLL has solved the fatigue problem 3 times.

Since I recently had a full round of Prednisone and now Venetoclax, Dr Furman currently has me taking a prophylactic medicine Atovaquone to prevent my contracting Pneumocystis. Here is what Wikipedia says it is: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system

So is it CLL and an opportunistic infection? You may need to see an infectious disease doctor, perhaps one that treats other immune compromised conditions like HIV, MS, etc. to get an effective work up for these potential other infections.

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.

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.

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From Patient Power Video: patientpower.info/video/im-...

Joseph writes in this question about fatigue. He says, “I sometimes have days where I’m extremely tired. Mornings are okay, so I’m able to shower and take care of myself and my home. But by noon, I’m exhausted. I feel I have no quality of life. Just walking across the room, I feel unsteady. Is this fatigue all about my CLL?“

Dr. Thompson:

This is a really good question. Fatigue is, by far, the most common symptom that patients with CLL have, and the reason for this is that the CLL cells themselves are producing these chemicals called cytokines, and also, they induce the immune system to produce these chemicals called cytokines that are the same chemicals that you make when you’ve got an infection, like the flu. The symptoms that you have when you have the flu, the exhaustion, the fatigue, not being able to get out of bed, this is a common complaints that patients with CLL have. This can happen even when the CLL is, what we call, early stage and doesn’t need to have specific treatment for the CLL.

It can be a big frustration for patients, and it can result in a significantly impaired quality of life. Now, that having been said, fatigue is a somewhat vague symptom, and it have many potential causes, so I would strongly encourage any patient for whom they have significant amount of fatigue, like you, where it’s effecting your quality of life to a significant degree that you should go and see your doctor, be thoroughly evaluated to determine whether there are any other causes for the fatigue.

We see many patients who may have undiagnosed sleep apnea or an undiagnosed endocrine disorder, or any number of other things that can cause fatigue, and treatment of those will make it go away. In many cases, those things are not identified, and it is determined, ultimately, that it was the CLL that’s responsible. Now, in that situation, you have two options. You can take symptomatic treatments.

Some of our patients take stimulant medications to help them with the fatigue, like Ritalin. We also have a clinical study at MD Anderson with a drug called ruxolitinib or Jakafi that is approved in other types of cancers. This drug actually blocks the production of these cytokines quite effectively in many patients, and we’ve noticed at least half of our patients have a fairly significant improvement in their fatigue levels on this treatment. The other option is to receive treatment that’s designed to kill the CLL itself, and which of those is most appropriate depends on your individual circumstances. I would strongly encourage patients with significant fatigue to talk to their doctor about it, make sure it’s not something else, and then discuss what options might be available to help them with that fatigue, because it’s awful going through life feeling exhausted all the time.

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The following was submitted to CLLForum (cllforum.com )by Mark: cllforum.com/reply.php?topi...

There are many reasons for people to feel tired, and CLL patients are not exception. One the common reason is an infection, and the body is trying hard to repair and rebuilt itself.

Without the crucial process of acute inflammation, the body could not heal itself. All inflammation starts in this acute phase. Whenever your body becomes damaged in some capacity due to a foreign agent, and it responds immediately to repair the damage. In many cases, this reaction goes undetected, or your symptoms are so mild that they are even unnoticeable.

Once the threat (fire) is gone, the body is able to go back to a non-emergency state—and the acute inflammation process turns off. Chronic inflammation occurs when your body has to continuously and unsuccessfully try to get rid of an ongoing (smoldering embers) bacterial or viral infection, fungus, heavy metal and/or chemical contamination. When this happens to you, your body’s inflammation process fails to shut down - and your body is progressively weakened over time because it is overstressed. Pro-inflammatory cytokines are the part of our immune systems that attack and kill cells with oxidative chemicals. If they don’t stop their attacks, they will start killing the good cells that our body needs.

Every chronic disease is an inflammatory disease. No matter what so-called disease you have, from cancer to the common cold, inflammation is a major part of your problem. Most Americans suffer from chronic inflammation, caused by a variety of factors that seriously undermine health and ages us prematurely. Common inflammatory diseases include allergies, Alzheimer's, asthma, arthritis, autoimmune diseases, bursitis, cancer, cervicitis, colitis, cystitis, diabetes, gastritis, heart disease, hepatitis, infections, myocarditis, nephritis, neuritis, osteoporosis, prostatitis, sinusitis, tendonitis and aginitis.

ncbi.nlm.nih.gov/pmc/articl...

Testing for Chronic Inflammation - C-reactive protein is a solid indicator for disease potential. Interestingly, research reveals that chronic inflammation increases the level of C-reactive protein (CRP) in the blood. As such, the American Heart Association and the Centers for Disease Control and Prevention (CDC) jointly recommend using inflammatory markers such as CRP to assess heart disease and stroke risk. Taking it a step further, high C-reactive protein levels may alert you to the potential for other diseases, not just heart disease and stroke. CRP is a simple blood test. While the CRP test does not specifically diagnose a particular disease, it is a general marker of infection and inflammation that alerts medical professionals that further testing and treatment may be necessary. CRP tests can also tell you if you’re getting better, or if medical treatments and therapies are working.

Len

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Vinnet is a resident of India, while there are a few CLL researchers in the country, but CLL is quite rare and clinicians specialzing in CLL are even rarer or non-existant.

Most of my Indian CLL friends go to Englind or Auustralia for consultations and treatment, but it is a huge expense not an option for most.

~chris

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Thanks gene7591. In India, there are no Cll specialists.

Luckily, I live in Delhi which has best hospitals and doctors. In my last quarterly review last week, I was told by senior onco consultant that CLL is game of dice. No one can predict its progression. If blood parameters become bad, I will be administered chemo.

Hopefully in near future, we may have a cll specialist. I wonder if there are cll specialist who can consult online?

best wishes

vinnet

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