It has only been a month since I'd been diagnosed with CLL. I shouldn't be feeling this crappy this fast? My GP admitted that I've most likely had this cancer for much longer than we known since this year (the testing and eventual hospitalization in late April to early May) was the first time I'd gone to the doctor in a very very long time. She thinks I've had it a while, but my counts aren't all that drastic? Wbc was 14,000, platelets were too high, iron and hemoglobin were pretty low. I got the news on July 3rd, and already, I've become a skinny, pain-wracked miserable shell of the person I once was. How the heck can I be feeling so much pain (my bones legit hurt as do my muscles and my joints), have Petechiae all over, be exhausted to the point of not being able to move, and be feeling so darned...sick when it has only been A MONTH? I don't think much of it is mental, but now that I have the dx, it does feel like I don't have to hide my pain (the pain that I'd been feeling from even before the diagnosis by the way) or my misery. I really am in pain. Tylenol did nothing. I refuse to take anything stronger.
Has anyone felt like this? I'm so lost. I don't see my Oncologist for 7 more weeks. I can see my GP whenever I need to because she is literally in the same building as my Group Therapy Program. She looked concerned when I was just talking to her yesterday (Thurs). I'm scared but skeptical. Can't trust my own brain? Help.
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MamaToFive1971
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In my case the CLL never got really bad (WC 34,000 ALC 26,000 )
but in trying to maintain my normal lifestyle of a physically demanding job and very competitive sports life I completely exhausted myself and had all kinds of difficult to resolve infections
At one point in 2019/20 I had a low grade fever for almost 1 year that my GP finally resolved with and aggressive treatment two antibiotics
After this was resolved my situation slowly improved over a two year timeframe and and I am really active again BUT certainly cannot maintain my pre CLL Lifestyle
I am so sorry and so very concerned for you. Are there any cancer centers you can go to? Have you had a bone marrow biopsy? They found three more acute leukemias in my BMB and I wasn't even feeling as bad as I should have!! 7 weeks is too long to wait and you should be seeing a hematologist as they are more informed about leukemia. Honey please take care of yourself sooner rather than later 😲🤦🏻♀️
sorry to hear your suffering at the moment but with low hgb and low iron sounds like the onset of iron deficiency anemia, which is very treatable with the help of your Gp.
Anemia's a very hard thing mentally and physically to deal with and with your recent diagnosis to worry about as well will all be adding to it..
Speak to your Gp regard testing if you can’t see your oncologist and hopefully you’ll get it under control very quickly, anemia’s a common starting point in Cll for treatment but hopefully it’s just a simple iron deficiency you can deal with..
I’ve been battling anemia for a while after treatment so I know how low it can make you feel..
Try to get plenty of rest,eat well and speak with your Gp as soon as possible to put your mind at rest, and in regard your Cll if and when the time comes for treatment there’s plenty of excellent therapies to manage it and get you back to normal…
In the beginning there’s always lots of questions and fear and worry but there’s plenty of highly intelligent knowledgable people on this site with a wealth of experience to help you..
Just as an aside to this conversation - I am severely anemic, docs all admit to it, but they won't treat me and won't give me an answer "why?" when I ask. I think not having anemia issues on top of cancer issues would go a long way in giving strength to a person. Lewis what are you doing for your anemia that is if docs have acknowledged it
Hi Kerry I’m sorry to hear your going thru a hard time as well.. I finished a six year trial of Ibrutinib and Rituximab in November 2022 and everything was looking good until I became anemic a month after finishing treatment…
I’ve been thru all the blood tests and bone marrow biopsies and scans and they can’t seem to work out what’s causing it..
It was turbo charged in the beginning and I had to have 11 transfusions last year but it seems to of slowed down… my haematologist randomly asked me if I’d try high dose prednisone (steroids) as he wondered if it was haemolytic anemia which presents in a small amount of Cll patients.. I responded very well to them but it returned immediately once they stopped, we then tried again and they worked but it returned once they stopped so I did 4 rounds of Rituximab a few months back which seems to of slowed it down but hasn’t put it into remission and it’s started dropping again..
My haematologist still doesn’t know what’s causing it and said the next step would be to treat the Cll even though I have no B symptoms and all my other bloods are fine..
My last blood test was nearly two weeks ago and was 110…
I’ve also struggled for a long time with food intolerance inflammation and exhaustion (fatigue)..
I’ve done a lot of research over the years into the gut and foods and mechanisms of the body, in the last two weeks I’ve been proactive and adjusted my diet cutting out all the food groups that seem to affect me such as dairy gluten sugar etc and I’ve been to see a specialist nutritionist..
I can only advise you on what I’m doing at the moment, I don’t want to offer it as medical advise..
I’m currently resting as much as possible eating lots of vegetables and chicken and some certain fruits.. I’m also drinking plenty of water roughly 2.5 litres minimum a day and I’m taking a vitamin d and magnesium supplement a multivitamin supplement and omega 3 oil daily on the advise of my nutritionist, I do actual feel like my haemoglobin has started to increase or stabilise the last few days but I won’t know until my next blood test this coming Tuesday..
With all the stress we’re under and illnesses and drugs we have to take our bodies especially the gut are under a lot of pressure which can cause leaky gut syndrome which is where a huge amount of illnesses arise..
The best advise I could offer you which I know is extremely difficult for most of us is to listen to your body, when tired get plenty of rest, fill your body with a nutrient rich diet keep hydrated and probably the most important and hardest thing is try to avoid stress as this goes hand in hand with most illnesses including Cll..
Remember your body is an amazing tool and does have the ability to heal from almost anything, you’ve just got to give it the right aids..
I hope things get better for you and you regain your health soon, don’t give up and importantly be proactive yourself as it’s your body and you know it better than anyone…
Hi Lewis. I also have an ostomy, after massive septic shock after flag ida chemo treatment. I can't eat veggies nor fruits (unless they've been washed peeled and softened ) and that's just the fruits. I can eat bananas. I eat protein and carbs and take liquid dietary supplements. And drink a lot of water. And eat crackers and cheese as a snack. I, too, cut out sugar lactose dairy like you. Helps with the ostomy but I can't imagine I'm getting my vitamins from bagels! I've asked docs to check my vitamin levels iron levels and haven't had my cholesterol level checked in years even tho I've asked. Truly amazing to be brushed off like that. And stress is a very large part of my diet and figuring out when to take my many pills 😳. I actually look forward every morning to my OJ, Cheerios and bagel with cream cheese and coffee. Because afterwards I feel good. Basically the only time of the day I do. I have no muscle strength at all and my bones ache and I'm constantly cold. Life as I know it.
Dear MamaToFive, my CLL diagnosis was made by a rheumatologist with whom I made an appointment due to severe joint pain. My lymphocyte count was only 11K at the time of diagnosis. My CD19+ CD5+ CLL clone was making an IgG kappa light chain that was causing the severe joint pain. Maybe you could consult a rheumatologist about your joint pain, and if your CLL clone is causing it, you may be able to start treatment even at such a low lymphocyte count.
Best wishes for an early resolution of your symptoms,
I had 22 months in watching and wait before I needed treatment. The reason for treatment was extreme fatigue and enlarged lymph nodes. I had the SLL form of this disease at first and it progressed to CLL. I also had tremendous pain that I was trying to attribute to enlarged lymph nodes from CLL/SLL, pressing on nerves or something… But it turns out I had degenerative disc disease, fibromyalgia, DISH condition of the spine, that are all separate from my CLL. The cumulative affect of pain and fatigue has changed my life. But treatment for my CLL did help the fatigue about 50%. Please educate yourself about CLL/SLL on reputable sites like this one, and cllsociety.org. The more you know helps to lessen any anxiety. All the best to you.
Do you have any enlarged lymph nodes? Your WBC number is certainly not high enough to suggest that you should be in such a miserable state now. Regarding your low iron and hemoglobin levels. Are you on any specific diet? How are your vitamin D levels? Do you suffer from any other chronic conditions which might be the reason of why you feel so poorly?
It could be something else, but as a I person who got sick pretty quickly and had major petechia and anemia, if I were in your situation I would ask my oncologist if you can get on a waitlist so if anyone cancels you can get in earlier. I would also ask my GP to write you orders for another set of bloodwork. If this is caused by something else, the bloodwork might show a trendline that might help dx something else. If you are 17p deleted or have the SLL version of this, that could account for rapid progression or why your WBC is not higher. Just my two cents but I fell apart quite rapidly and by the end couldn't walk up a set of stairs without panting because of severe anemia. Don't be afraid to be your own advocate. I also find that being very very polite and thankful but persistent when necessary helps.
Mama to Five, I'm assuming you were diagnosed via Flow. Have you also had a FISH? Bone pain is a common symptom of Multiple Myeloma just wondering if that has been ruled out.
OBTW.....my wife is also mama to 5. God bless you!
Consider tick bourne illnesses. These can cause pain and rashes and need antiobiotic intervention as promptly as possible. The CLL may not be the issue here. At 49 I had anemia from excessive bleeding from fibroids. I'm not sure what to make of the high platelet count. Wishing you luck!
just wondered if you have been checked for autoimmune diseases. I had severe joint pain and muscle pain , fatigue and fever when I was hospitalized and found CLL. Started tx but no real improvement in fatigue and joint and muscle pain, I've stopped tx and will see what happens but I'm thinking it might have been a rheumatoid flare. Have you been tested for anything like that. Your Md could check inflammatory markers if hasn't already
yes listen to your body and call your docs and let them know how you are feeling! Communication is always the key! Keep calling and talking until someone hears you !🤗🧡🤎
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Good article on navigating complementary cancer treatments
VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (CLL/SLL)
Specialsts
