My husband was diagnosed with CLL about 6 years ago when his WBC was at 24000. We chose naturopathic therapy (vit C infusions, colon hydrotherapy and hyperbaric oxygen treatments). After several months with no symptoms, he stopped treatments and continued his normal lifestyle of working as a heavy equipment operator, running a construction/logging company and enjoying fishing/hunting amongst chores of our small farm (where I breed, raise and show pygmy goats).
Fast forward 5 years when his energy and motivation tanked after being laid off for 6 months. Decided to see the naturopath and found WBC increased to 79000. Started IV therapy again (vitamin C and Poly MV) for 6 weeks but ran out of funds to continue. He also went on medical leave from the union (per se) during that time. WBC dropped to 74000 after that 6 weeks of treatment (and about $5k out of pocket).
Meanwhile, he's still out of work, too tired or motivated to take care of personal contruction business and has no strength to go fishing, hunting or do anything other than sit in a chair and read all day!
In the meantime I'm searching for anything to help. I try to suggest daily chores like feeding chickens and collecting eggs, and sometimes it helps. I search for natural supplements, etc that might be helpful for symptoms as well as treatment of CLL.
He can't be THAT tired ALL the time...or can he?
I'm at a loss, and not feeling very hopeful as I try to carry the load of a full-time job and care for him AND all the animals.
Are the western medical treatments/pharmaceuticals worth looking in to?
I'm not familiar with the stages - not sure where he would land with WBC at 74000 (I know that the lymphocyte numbers, etc also affect this).
Any help or suggestions would be appreciated!
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qtrhorsechic
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Please seek out ‘western medical treatments/pharmaceuticals’ as you term them. Your husband could have seriously low haemoglobin levels and red blood count if he’s so tired and lethargic. He needs a full blood count to be done and his CLL to be properly assessed. Please seriously consider this and very soon!
With all respect to treatments other than recognised western medicine your husband is dealing with a serious condition that either now or later will not be managed by Vitamin C infusions or similar.
I have no idea whether his lethargy and tiredness are caused by depression, lack of motivation or the CLL but crucially neither do you or his naturopath. He needs to see, at the very least, a haematologist and preferably a CLL doctor to assess his current status and needs. He needs to see one straight away.
He has a blood cancer that will likely eventually overtake him if it is not managed and there is no peer reviewed evidence that it can effectively be managed with natural remedies. If he understands that and is comfortable with it then that is his choice but if he wants a good chance at a decent standard of health for many years he needs to be see a specialist.
Sorry to hear it. What everyone else has said.. I must add, that my fatigue was quite epic.. certainly waking up was the time I felt just like more rest..
There are various explanations..
- start with blood tests: it can be normal factors of thyroid issues, but is more likely reducing numbers of red cells/haemoglobin, due to CLL cells crowding the bone marrow..
- it can also involve confused cytokine signals caused by all those tumour b-cells.. a false sense of fatigue, if you like, but just as real to the sufferer.
Expertise is highly recommended; after my course of treatment, my fatigue was/is largely resolved.. I’m imperfect, but sleep quite normally, have energy and don’t feel like a nap in middle of the day..
I’m 50 - how old is your husband?
This disease is always unwelcome, but there are lots of effective treatments that can see some mixture of remission and/or management.
I hope that you have a good insurance plan through his employer/union. He will be eligible for Medicare in 2 years - that's a good thing, for sure. Otherwise, apply for assistance through the Lymphoma-Leukemia Society contacts. Call Abbvie Pharmaceuticals - they can direct you to treatment options and assistance. CLL is a manageable disease with these new wonder drugs, but if your husband is insistent on being treated with noxious potions from the Hogwarts School, I certainly respect you for how much you care and trying to get him to do the right thing. May I suggest that you contact the nearest hospital connected with a university medical school and ask for assistance. Best wishes!
Agree with all of the above comments. I was diagnosed with CLL when my WBC was at 14,000 in 2016. I was admitted in an AVO clinical trial at DFCI when it was about 70,000 in 2018. It was mainly because my platelets were low at that time, but so was my hemoglobin (down by 1/3), so I was very tired. This trial took 24 months, but worked very well for me and my blood work is back to normal and I feel much better. There are more conventional treatments that take less time (6 months) and perhaps do not last as long, as well as daily pills that he can take for a long time, but he will have a lot of good options to choose from that have proven effectiveness. I would urge you to seek more conventional medical advice ASAP. The CLL drugs are expensive, but they are covered by insurance. Since I was in a trial, I got them for free. Best wishes.
So sorry this has become his situation. I do hope you will get a hematology/oncologist (or if you can only get a hematologist who knows about blood cancers and how to test for them, please do that.
Has your husband never seen a hematologist/oncologist? Has he had a FISH, a flow cytometry test or a Molecular report on his blood?
As others have said, he needs to be seen and evaluated for both his physical and emotional/mental health. And, for your emotional well-being also as you seem to be at your wits end as to how he can be helped and begin to live the once vibrant life you have described.
Losing his job could be the main reason for his despondence, but there are medical/blood situations that can add to his feelings of fatigue and lethargy and they may or may not be part of the CLL.
Without the true testing with the results being treated specifically, it is doubtful your husband will recover his what seems to have been a vibrant and full life.
You have recieved excellent advice from all the other responses, and are at the point where nearly everyone that tries alternative medicines realizes that "natural" substances are not effective in treating CLL. But fortunately in the last 10 years Western medicine has developed and proved targeted treatments that work differently than Chemotherapy and specifically attack the cancer cells without permanent damage to healthy cells.
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That said, since CLL also weakens our immune system, it also leaves us open to infections that can cause fatigue, so getting a Western medicine doctor to use blood tests and a full diagnostic work up to exclude any bacterial, viral or fungal cause is also important.
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Here are links to several previous posts that you may find useful:
Welcome to our community! I have every confidence that the support you find here will soon restore hope for you and your husband. You've had some very helpful replies already, with Len's second reference in particular about how your husband can arrange a free consult with a CLL specialist, being one that you should be able to quickly arrange.
Your husband's tiredness with CLL is an extremely common symptom, with over 1,300 of our community's posts mentioning fatigue: healthunlocked.com/cllsuppo... Severe fatigue is in fact one of the reasons for starting treatment, which is usually very effective at reducing it, though sometimes the fatigue doesn't lift for a while after finishing treatment. It is important to eliminate other causes for fatigue, such as depression from losing employment and previous treatments not working. You've actually correctly suggested exercise as something which can help, both for CLL and depression related fatigue. There is good evidence for exercise helping both, unlike the other naturopath suggested treatments. With respect to exercise and fatigue, I know personally how just going for a walk can ironically lift fatigue, but there are times when it's a struggle to just walk to where you can lie down and rest.
We had one member who tried those expensive IV vitamin C infusions for a year and he reported no benefit. I maintain a growing list of treatments that don't work and hadn't heard of Poly MVA, but per en.wikipedia.org/wiki/Poly-MVA"...there is no medical evidence that Poly-MVA confers any health benefit and some concern it may inhibit the effectiveness of mainstream cancer treatments if used at the same time". Wikipedia also reports it as being expensive. Clinical trial approved treatments are very expensive, but as many members have shared here, they work very effectively.
You are also correct about lymphocyte numbers affecting your husband's WBC. There are five different types of white blood cells that add up to the total WBC, six if you include the immature stage of the most common white blood cell type, neutrophils (which generally quickly becomes the second most common type when you have CLL). CLL cells are cancerous lymphocytes, so monitoring the lymphocyte count is the most accurate way of checking for changes in CLL in the blood. This post explains more about this: healthunlocked.com/cllsuppo... Lymphocyte counts bounce around a fair bit, WBC counts even more so, which can make it appear that a treatment is working, when the reduction is just due to random changes.
While it is important to know your husband's stage, stage doesn't determine when it is time for treatment, although it can give some idea of how long before treatment will be needed. I was diagnosed at stage 4, but it was 10 years before I needed treatment.
While your husband is also very welcome here, you have plenty of company with other concerned partners doing the research.
Please listen to everyone here and seek out a CLL specialist if possible. He doesn’t need to feel this way. There are so many great treatments out there today that allow you to maintain a quality of life. The lethargy could also be from stress and anxiety which can tear up a body worse than the CLL.
It seems to be a reoccurring theme when newly diagnosed or prior to seeking true specialist help. Some, or most try to find the perfect diet, eat special mushrooms, take vitamin c infusions, or stress the liver on supplements promising to cure or slow the cll progression. I'm 40 years old and was suffering from extreme fatigue. I looked into all the same things and decided with a little research and information from this forum most of that is a scam with little to no upside. Western medicine is scientific based and now in the era of extreme advancement. Your husband can most likely at the minimum take a simple pill a day and regain his life. Please seek out a specialist for him.
I get your interest in natural herbs and treatments etcetera, but anyone interested in those therapies should be aware that there is a purpose and reason for things like antibiotics, surgeries, radiation, chemotherapy, and other medications. Sometimes we need to be wise and recognize when modern medicine is necessary. And yes I'm aware of things like the substances in Black Tea and studies on B Cells etcetera.
Your husband deserves a chance to navigate the remainder of his life with modern medicine, and CLL has no cure at this time. There are new Novel Targeted Therapeutics that have provided an alternative to Chemo for our illness. Many of us remain in what is called Watch and Wait for many years, and some never go into treatment at all.
To get the best for your husband, he deserves to be seen and evaluated by a good CLL Specialist. I believe this site has a link to a web site with a list of them in various cities in the US, and I am good at researching Specialists for anything if you want to contact me for assistance too. I once was in Hospital Administration and these days its Medicare insurance.
I wish both you and your husband well overall, and in particular with this battle.
Wow, I'm overwhelmed at all the kind responses, words of wisdom and suggestions! My husband had been seeing an oncologist who retired then was shuffled to the replacement oncologist several years ago, who suggested a "wait and see" approach. I didn't realize there was an actual oncologist who focused on hematology. I just found a few on our hospital's website and, with your suggestions, have relayed that there are other options besides chemotherapy (which we thought was the only other option) and will make an appt. So, from the bottom of my heart, thank you all!!
Hi, this website has given me so much information that is always correct.When cll is diagnosed unlike most cancers there is a policy of watch and wait. This is because cll usually develops slowly and there is no benefit in treating early.
In my case the cll was found when I was being treated for something else. It was 9 years before I needed treatment but I was monitored every year. In 2010 the treatments that are available now didnt exist. I had chemotherapy for 6 months. It wasnt the end of the world and I didnt lose my hair. It worked!
As is usually the way, the cll started to come back after 5 years. I now take 1 tablet every day. My blood numbers are normal. Treatments are being developed now that we could never have envisaged ten years ago.
Many people want to avoid conventional treatments but the alternative is frightening. We have a choice but a few years ago there wasnt a choice. In 1968 my Dad passed away. He had cll and nothing could be done. I was diagnosed 20 years ago.
Unfortunately fatigue is something that many have suffered and some days are worse than others. Getting moving out of the chair is the main thing. I can eat my breakfast and go back to sleep. By the time I have showered and got moving I feel better but I havent the stamina that I would like.
I am glad you are seeking medical help and your husband will be monitored and treated when needed. I know I am glad I dont have pressure put on me to do more and I have days when I sleep.
Althougn I have bad days we have travelled and enjoyed life after I had chemo.
Talk to your husband and see if he can manage a task each day but at risk of sounding like I am interfering, it might be time to look at simplifying your life. Could you get help to manage his business or slim down your work load? You need help too. Sorry if I am overstepping the line, Anne uk
Hey, re the fatigue, my husband was diagnosed few years ago with stage 4 esophageal cancer and he went from being strong andable to walk distances to needing a wheelchair in a matter of a couple weeks (he was going down that fast), He had to get a transfusion, and with that and starting treatment, got energy back (until at the end). And if they give him steroids as they often do (and did to husband), it pumps up energy even to manic levels (so we quite the steroids). But bottom line, cancer can make even walking hard for a strong man. Can you imagine how depressing would it be to have so little energy and yet know people suspect it might be all mental? So for your husband's sake, assume it's medical, and, as everyone else tells you, schedule an appt hopefully with an oncologist, and best with one who deals with blood cancers. But no time to waste. Even a regular GP can at least check his blood count. Not putting down Vitamin C --I'm big on alternatives but every day there are more and more effective medicines so get to a doc.
I've had CLL for almost 21 years. Have been on Imbruvica Ibrutinib for the past 7.5 years (now 1 pill a day). Everything normal. I often forget I have CLL.
Hello all, I really appreciate the suggestions and support received from this group!We saw an oncologist/hematologist who specializes in CLL. After testing, he prescribed Calquence, which we received in the mail today. At a cost of $14k a month, we were approved for copay assistance, which equates to a fully paid prescription by insurance which is a blessing since the hubs hasn't worked in almost a year (due to several factors besides CLL symptoms) and has no income at this point.
He'll start taking Calquence in a few days, since he has to wean off Warfarin and switch to Eliquis (for Factor 2 blood disorder) before starting Calquence.
Just curious - anyone on Calquence experiencing side effects?
This is all good news! So glad you found a good doctor and that you were able to find financial assistance.
Many people have zero side effects with Calquence. I had very few. Other people have mentioned headaches for the first few weeks (sometimes in the middle of the night). Oddly a little bit of extra caffeine helps. Really important to drink plenty of water.
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Has anybody found that regular running helps with CLL?
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