I have CLL with TP53 deletion and 11q deletion. I am scheduled for ibrutinib for treatment . I was diagnosed in April. My symptoms started in early spring, extreme fatigue but also chronic muscle pain and nerve pain and joint pain in my legs
The dr seems to dismiss this as being a symptom of CLL although I never had it before this all started. Has anyone else had joint muscle and nerve pain?
I dont like that i cannot be validated with my symptoms. They are real.... also wondering if anyone has experienced shortness of breath, although my lungs are find and i have no tumors that would effect my breathing.
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Hectanooga
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It's been a while since I posted my fatigue reply, so here it is again, apologies to those members that have read it many times:
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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.
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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.
Why do CLL patients experience fatigue? Dr. John Burke and Dr. William Wierda, renowned CLL experts, explain the potential causes of fatigue in CLL patients.
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?“
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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.
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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.
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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.
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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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Now to my (Len's) personal experience:
All 4 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.
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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.
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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.
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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.
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I started Venetoclax in June 2016 and within 3 weeks the cramps and fatigue were gone. So for me treating the CLL has solved the fatigue problem 3 times.
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When had a full round of Prednisone and then Venetoclax, Dr Furman had 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
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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.
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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.
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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.
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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.
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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.
thank you for your reply and information. I have been tested for various other possible causes all of which have been ruled out. My gut feeling is that it is CLL related. Pre CLL I was very active and fit with no major health problems so my quality of life and activity level has changed significantly for the worse due to my extreme fatigue and muscle, joint pain.
Thanks for all the good information lankisterguy. My doctor and others take my fatigue problems lightly, as if it was all in my mind. Some will say just exercise.
Thanks Scott, Pre CLL i was an extremely active and fit person. It bugs the heck out of me that dr. gives me the impression that she thinks i am exaggerating and is "stumped" as to my muscle and joint pain. Trying to get myself out of the weeds with CLL and am curious about other peoples symptoms to verify what i am already feeling and experiencing having no prior knowledge of CLL or anyone with CLL . Thnks for the info
I am happy to hear that you ar doing well on Ibrutinib. I have been reading up a bit and some people have really bad experiences with it. I start next week so i guess time will tell I am worried that the treatment will give me more side effects similar to what I am already experiencing with my CLL symptoms.
Well I am hoping mine will grow fast curly or not. Lol
I'm CLL stage 1 watch and wait, I get shortness of breath walking up a couple of flights of stairs and sometimes I feel extreme tiredness, but it kind of passes after a while. I also am getting joint pain but it goes after a while. I'm drinking Periwinkle tea, which is where the chemotherapy agents for leukemia come from. It seems to help. I recently went on a business trip for 3 weeks and forgot to take the tea with me. My symptoms definitely got worse including night sweats. On my return home after just one cup of the Periwinkle tea the night sweats went and the tiredness and joint aches arent so bad, but they are still there to a degree
Morning Hectanooga and welcome to the Forum. Your comments raise several questions but first let's remember "How does CLL affect the body?
When they work right, lymphocytes help the body fight infections. In CLL, the leukemia cells grow out of control and crowd out normal blood cells. These cells often build up slowly over time. ... In time, the cells can spread to other parts of the body, including the lymph nodes, liver, and spleen." (Taken from a site on the internet). The key here is that leukemia cells....crowd out normal blood cells...which means often times that red blood cells do not get oxygenated properly. So the first question is what is your RBC count? What is your haptoglobin count? Has your doctor discussed with you whether hemolysis is occurring in your system? Joint, muscle and nerve pain is often common in patients who suffer anemia and CLL. Fatigue is a common factor associated with CLL. Are you seeing a Hematologist/Oncologist or just a regular doctor? If your physician has not discussed anemia with you. I wonder why not. "Anemia is a condition in which you don't have enough healthy red blood cells to carry adequate oxygen to the body's tissues. Having anemia may make you feel tired and weak. There are many forms of anemia, each with its own cause. Anemia can be temporary or long term, and it can range from mild to severe." (internet) Shortness of breath is associated with anemia also. Are you currently on prednisone or some other drug preliminary to ibrutinib? You need not answer all these questions in this open forum but they are given for food for thought and discussion with your Hematologist. Best wishes for a better outcome once you get on ibrutinib.....it is considered by many to be "a wonder" drug. However, fatigue is a common side effect when on it.
thank you for your welcome to the forum. So my red blood cell count is within range my wbc was 20 in April and now 40ish. I presented to GP with fatigue and general unwellness which led to CBC which led to flow cymetery, CAT, MRI, PET and FISH. Upon visible examination by my GP he noted several swollen lympnodes in my neck, collarbone. CAT showed many swollen nodes from diaphram down and possible slight enlarged spleen.
During my wait for all these tests and my referral to the hemotologist, my symptoms progressed very quickly in that i developed many swollen nodes all over, especially around my ankles and neck. Mouth sores, joint pain and muscle ache, mostly in legs as well as 2 boil like sores on my lower extremeties. Had to leave my work as i was so ill i could not work
In retrospect I believe I had CLL sometime last year. I was unwell at that time and dismissed it to my TSH levels as I had thyroid cancer a few years ago, and had difficulty keeping my levels in the correct range, menopause and aging
So just got full diagnosis regarding the markers on Monday , which my dr. determined was high risk and recommened treatment of Ibrutinib.
I had shortness of breath 3-4 months before I started chemo. my red blood cell count was dropping very fast. My lungs and heart were fine. I started doing fast 3 mile walk and it greatly improved my breathing even before treatment, so I would say moderate exercise does help. Blessings with the fatigue, not easy to exercise when you have fatigue.
Hi Hectanooga—Welcome to our community. Is your doctor a CLL specialist? It’s very important to have one, if possible. (I may have overlooked that info in your posts if you told us already.) wishing you well in this journey.CC
I have a hemotologist and she has many cll patients. I dont necessarily like her style of communication. She seems rushed and scattered and very vague. Possibly overworked.
Shortness of breath was one of my main symptoms. I did have a skin reaction when I first started Ibrutinib but my dose was lowered and I'm doing good. My fatigue that I was feeling before Ibrutinib has gone.Good luck with Ibrutinib and hoping your hair grows back fast.
Clinical trials can provide some good targeted combination therapy if you were in a location that he can get them. I am 17 P deleted and have fortunately done well on a I am 17 P deleted it and have fortunately done well on I plus V trial.
Welcome Hectanooga! I am new too. I wish you best of luck and your treatment goes well and your ailments resolve.
- LoveCuresCLL John❤️👩🏻Steffie.
Alongside periwinkle tea, I'm also doing the Wim Hof Method, which is a breathing technique of hyperventilation. Plus cold baths which I see more as optional and I leave more than take. But the hyperventilation seems to help oxygenation of my blood and makes me feel much more energised. I think this helps me greatly with my CLL. Since I started doing this, my oncologist has changed me from seeing her every two months to every three months. I'm in the UK and seeing her on the NHS was tricky as she was rushed and had lots of other patients in clinic. So I started paying to see her privately, it's only £150 a time but the difference in the level of care I get is night and day, and in a much nicer hospital clinic, plus she sees me pretty much when I want in the evenings. I still get my bloods done free on the NHS but it works great for me.
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