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I was just diagnosed with CLL
I am curious to know how others keep themselves from getting tunnel vision regarding CLL. When I first got the diagnosis I was fine with it... for about 15 hours then it got to me, in a big way. I am so tired and my glands are so swollen that I cannot swallow or sit up comfortably as it hurts the swollen glands in the groin area, it affects my pain condition causing even more inflammation. The lymph nodes that are swollen are in 3 different places, neck, underarm, groin. I lost my appetite about a month ago and cannot sleep well even though I am exhausted. Also, my sensitivity to our usual household products and foods has really gotten exaggerated. My husband showers at the opposite end of the house (leaves door closed when done too) and I still get nauseous from the smell of the shampoo. We had a bacon, egg and hash-brown omelet 3 days ago and I can still smell the cooking smells from that. About a year ago our normal household products have become irritating and unusable, causing headaches, nausea and irritating the mucous membranes in my mouth, nose and eyes. Like a 'super-chemical' stalking me.
I have very serious night sweats where I have to change my gown and since I cannot stay up long enough to change sheets I lay down a bath sheet every 4-5 hours which starts about an hour before my normal bedtime. I would sure like to lie in dry sheets again adn not up top of wet or towels, it's been so long I forgot what dry bedding feels like. I experience severe dizziness and have been falling after a couple steps, too weak to take another step, my husband had to fetch my wheelchair and bring it to me in the middle of the night as I got too weak and could not finish my daily walking (about 40 steps is all I can do without assistance other than furniture or walls). I have been extremely nauseous many times in the last 6 months and now, more times than the previous 10 years combined. The nosebleeds don't want to stop once they start and are rather nasty to deal with. My eyesight is affected and I have a few blind spots in certain directions and then my eyes water profusely all the time. And it seems like my muscles cannot move fluidly like before and a lot of involuntary twitches, some are pretty pronounced and obvious.
How do you deal with the weakness and resulting feelings of worthlessness and dread coupled with the pain I've been dealing with for the last 14 years after a crushing accident. I have tried getting it off my mind but it is ever-present and quite a nuisance.
I have very serious night sweats where I have to change my gown and since I cannot stay up long enough to change sheets I lay down a bath sheet every 4-5 hours which starts about an hour before my normal bedtime. I would sure like to lie in dry sheets again adn not up top of wet or towels, it's been so long I forgot what dry bedding feels like. I experience severe dizziness and have been falling after a couple steps, too weak to take another step, my husband had to fetch my wheelchair and bring it to me in the middle of the night as I got too weak and could not finish my daily walking (about 40 steps is all I can do without assistance other than furniture or walls). I have been extremely nauseous many times in the last 6 months and now, more times than the previous 10 years combined. The nosebleeds don't want to stop once they start and are rather nasty to deal with. My eyesight is affected and I have a few blind spots in certain directions and then my eyes water profusely all the time. And it seems like my muscles cannot move fluidly like before and a lot of involuntary twitches, some are pretty pronounced and obvious.
How do you deal with the weakness and resulting feelings of worthlessness and dread coupled with the pain I've been dealing with for the last 14 years after a crushing accident. I have tried getting it off my mind but it is ever-present and quite a nuisance.
Thank you all for the suggestions I will check them all out with my multiple doctors. Two years ago I was complaining about seeing my one doctor every month for pain management, now I have more than all the fingers on one hand that I have to see every month.
I wish I would have gotten the blood work records when this all started I just did not think about it, and part of me wanted to ignore it and pretend it was all normal. With it getting so much worse though it's hard to ignore.
Thanks for the expert list, I'll check it out and see what I come up with.
I wish I would have gotten the blood work records when this all started I just did not think about it, and part of me wanted to ignore it and pretend it was all normal. With it getting so much worse though it's hard to ignore.
Thanks for the expert list, I'll check it out and see what I come up with.
Dr. Sharman's list of CLL experts and special local oncologists.
Keep in mind that your local oncologist is probably more apt to arrange an appointment for you with an expert. The other special oncologists would make very well versed general oncologists.
http://www.cll-nhl.com/p/cllnhl-doctors.html?m=1
Keep in mind that your local oncologist is probably more apt to arrange an appointment for you with an expert. The other special oncologists would make very well versed general oncologists.
http://www.cll-nhl.com/p/cllnhl-doctors.html?m=1
Dear summer313, first of all, I am so sorry to hear of the symptoms you're having. I'll ask a queston regarding your blood work, specifically your most recent CBC w diff, and I will also make a couple of suggestions.
First, the question. What are your WBC, RBC, HGB, platelets, and absolute lymphocyte counts (not the lymphocyte percent. *Always* ask for copies of all diagnostic test results, examples: blood work, CT scans, bone marrow aspiration & biopsys.
Second, it sounds as though you may not yet have consulted a CLL expert. If not, it will be VERY important to do so as soon as possible. I cannot stress this enough. If or when you need treatment ... or if you don't need treatment yet, your CLL expert will make his or her findings and recommendations to your local oncologist. Almost all local oncologists are very supportive of this and will intercede for you in arranging your appointment.
Here is a list of Dr. Sharman's recommendations of noted CLL experts and general oncologists who have, in Dr. Sharman's eye, shown themselves to have taken a special interest and focus on CLL. Regarding Dr. Sharman, he IS a noted CLL expert and researcher.
My very best to you, dear summer313. Oh, and to put your mind at ease, though you may have heard that bone marrow biopsies can be a bear, it is the skill of the person doing the procedure that makes the difference. For instance, if you go to an expert at a major research center, you will be having the procedure done by someone who does them all day long, every day, and does nothing else. They are wonderful. Local oncologists sometimes do bone marrow biopsies. The use plenty of local anesthesia, and many will give Verced IV, which essentially lets a person sleep through the brief procedure. My husband has had a total of 7 BMBs - his local oncologist, a CLL expert at two trials. Not once did he experience pain.
But arm yourself with information, learning about your disease, collecting your diagnostic reports and keeping them in a binder, each in a plastic sleeve, and above all see a CLL specialist.
Hugs from Southwest Virginia
Ugh, my phone's stylis just lost Dr. Sharman's address of his list. I will find it again and post it promptly.
First, the question. What are your WBC, RBC, HGB, platelets, and absolute lymphocyte counts (not the lymphocyte percent. *Always* ask for copies of all diagnostic test results, examples: blood work, CT scans, bone marrow aspiration & biopsys.
Second, it sounds as though you may not yet have consulted a CLL expert. If not, it will be VERY important to do so as soon as possible. I cannot stress this enough. If or when you need treatment ... or if you don't need treatment yet, your CLL expert will make his or her findings and recommendations to your local oncologist. Almost all local oncologists are very supportive of this and will intercede for you in arranging your appointment.
Here is a list of Dr. Sharman's recommendations of noted CLL experts and general oncologists who have, in Dr. Sharman's eye, shown themselves to have taken a special interest and focus on CLL. Regarding Dr. Sharman, he IS a noted CLL expert and researcher.
My very best to you, dear summer313. Oh, and to put your mind at ease, though you may have heard that bone marrow biopsies can be a bear, it is the skill of the person doing the procedure that makes the difference. For instance, if you go to an expert at a major research center, you will be having the procedure done by someone who does them all day long, every day, and does nothing else. They are wonderful. Local oncologists sometimes do bone marrow biopsies. The use plenty of local anesthesia, and many will give Verced IV, which essentially lets a person sleep through the brief procedure. My husband has had a total of 7 BMBs - his local oncologist, a CLL expert at two trials. Not once did he experience pain.
But arm yourself with information, learning about your disease, collecting your diagnostic reports and keeping them in a binder, each in a plastic sleeve, and above all see a CLL specialist.
Hugs from Southwest Virginia
Ugh, my phone's stylis just lost Dr. Sharman's address of his list. I will find it again and post it promptly.
Hi. I dont want to bother with all my symtoms in the past, but i did want to mention 1 thing that a neurolist once prescribed me for my cluster headaches, & it made things worse, BUT, i JUST WANT TO MENTION IT TO YOU, CAS IT CAUSED SO MUCH SWEATING THAT MY FINGERS WERE ACTUALLY POURING SWEAT OUT OF THEM! (woops, sorry about the cap letters!) Has your doctor checked your lithium count? If your body has to much lithium in it, it will cause severe sweating, & some of ur other symptoms. Also there are so many different vasculitis types out there. Ive had bouts with so many different type of vasculitis, & some of them lasted to up to 3 years! I am far from a doctor, but in the past, ive had to tell doctors whats wrong with me, & most of the time ive been right. You might want to bring the vasculitis up?, but i would definitely have ur doctor check ur lithium count! Also predizone is a good cure-all, but it must be monitered, usually high dose then tapered down over a 10 day span. It does have side effects like lowering ur imune system, but that ive noticed with me, takes many a treatment before 1 gets ill from it. REMEMBER, what works for 1 person might not work for you! I would definitely have ur lithium count done, just cas u say the sweating thing really bothers u the most, then ask him about possible predizone treatments? Ken is really smart man, & so is mochadelicious! Since my last severe brain bleed, that no-one told me about, & a few bad doctors prescribing wrong medicines i ended up with myelin sheith damage, & i no longer sweat anymore, & i now suffer from really short term memory, called vascular dimentia. You do not have to worry about that! Good luck! Again, i am not intelligent, nor am i a doctor, but starting to think i am smarter than a lot of them from just self diagnoses, & my own fixes. Different smells that bother you could also be brought on by natious fumes over the years, that can bring on ur head-aches. Over the years, i have become a big fan of oxygen therapy, that is known to cure tons of ailments, but you also need a prescription! I thought i had discovered a miricle cure, & found out a few years ago, they had done approved testing in Isreal, that is FDA approved. It is called HBOT therapy, but even smaller doses can be helpful. Fortunately when i went to first hospital, for my brain bleed, that they couldnt fix, i was lucky to have access to all the oxygen i wanted, plus i was on a predizone therapy. If it was a good hospital they should of known about that mixed with a moisture therapy. That is what another hospital did to me when i caught eppiglititis, 5 years ago. I was up, & walking after only 48 hours in the ICU! Sorry for tanging off, but i lost a lot of brain cells! Just wanted to mention of possible high lithium count for ur sweating! I hope at least 1 of these idea might work for you. Steve
COMMUNITY LEADER
On 2nd thought, I'd suggest initially looking into mast cells disorders first, rather than CFS - since many OTC treatments for that might benefit you.
COMMUNITY LEADER
Hi, multiple chemical sensitivities orthostatic intolerance, muscle problems, insomnia, being wheelchair-bound, and on and on... these can be hallmarks of Chronic Fatigue Syndrome, which is really profound immune dysregulation. One theory holds mast cells responsible. Mast cells produce histamine. Mast cell degranulation of histamine (and many other powerful chemical mediators) can be triggered by cytokines from B-cells. CLL can, as you know, result in deranged B-cells. (I'm assuming that your symptoms are not effects from chemo drugs.)
If you like delving into theories, CFS will provide endless hours because it isn't really understood.
Some have onset of CFS from severe trauma.
P.S. Dehydration from severe sweating can cause dizziness, etc. However, if you can't resolve low circulatory volume simply by having more water (and sodium), then a corticosteroid like florinef might help you retain water.
Have you had a tilt-table test?
You might be suffering needlessly from symptoms by seeing only oncologists. My guess is that it's very possible that a lot of your symptoms aren't only from CLL per se.
If you like delving into theories, CFS will provide endless hours because it isn't really understood.
Some have onset of CFS from severe trauma.
P.S. Dehydration from severe sweating can cause dizziness, etc. However, if you can't resolve low circulatory volume simply by having more water (and sodium), then a corticosteroid like florinef might help you retain water.
Have you had a tilt-table test?
You might be suffering needlessly from symptoms by seeing only oncologists. My guess is that it's very possible that a lot of your symptoms aren't only from CLL per se.
At the present we are in the watch and wait stage with the CLL. I have treatment for my other issues (pain, headaches, some cognitive function) which has been ongoing since 1999. I have discussed my symptoms with my doctors but it seems like each doctor treats a different symptom and there is no discussion about the treatment as a whole. I know my frustration and anxiety is a major part of how I feel too and can make things worse! As I got a new symptom I would tell my doc about it, but that made each symptom separate. Once I put them all together, I got the same conclusion that my oncologist did. I think the worst is the night sweats! I know I would feel more comfortable if we could eliminate that! I move on every day, napping every 4 hours if I can, eating foods that agree with me (smell wise and tummy nice). I stay mentally active on my site and interacting with my members so I am not alone and the support from others helps a lot!
I use my HONcode search and only get information from reputable sources as I have seen some really strange things on some sites! Fortunately, I know enough from researching and providing information on my own site that I can look at that stuff objectively! Sometimes it makes for fun reading too as I love to rip apart theories, my favorite past time when I was a university student.
Thanks for responding, it helps to know I am not alone.
I use my HONcode search and only get information from reputable sources as I have seen some really strange things on some sites! Fortunately, I know enough from researching and providing information on my own site that I can look at that stuff objectively! Sometimes it makes for fun reading too as I love to rip apart theories, my favorite past time when I was a university student.
Thanks for responding, it helps to know I am not alone.
Hi Summer,
I'm sorry to hear of your recent diagnosis. I went through a different type of lymphoma (Follicular) and I didn't have nearly as many symptoms that you described, but I did have feelings of fear and despair, especially when first diagnosed. I didn't know much about the disease when first diagnosed so of course my mind went to the worst places. Randomly looking things up on the internet didn't help either. No one told me to only look at credible websites that had up to date information. I was reading whatever popped up on my screen from looking things up on Google. What I didn't know was that huge strides had been made just in the last few years in the treatment of lymphoma and the outlook seemed to be improving greatly, especially with the use of drugs like Rituxin. I also went to a couple of Lymphoma conferences held by the Lymphoma Research Foundation. These conferences are held in different cities all over the U.S., and they were incredibly informative and helped to put many of my fears at ease. For me, knowledge was power. It was just about the only element of control I had over the disease.
Honestly, I didn't have to deal with so many physical symptoms like you are experiencing so I can't sit here and tell you how I dealt with it. I'm assuming your doctor is aware of all your symptoms and has prescribed medications to help? Have you started treatment yet? I'm thinking that treating the lymphoma will help alleviate a lot of your symptoms.
I'm sorry to hear of your recent diagnosis. I went through a different type of lymphoma (Follicular) and I didn't have nearly as many symptoms that you described, but I did have feelings of fear and despair, especially when first diagnosed. I didn't know much about the disease when first diagnosed so of course my mind went to the worst places. Randomly looking things up on the internet didn't help either. No one told me to only look at credible websites that had up to date information. I was reading whatever popped up on my screen from looking things up on Google. What I didn't know was that huge strides had been made just in the last few years in the treatment of lymphoma and the outlook seemed to be improving greatly, especially with the use of drugs like Rituxin. I also went to a couple of Lymphoma conferences held by the Lymphoma Research Foundation. These conferences are held in different cities all over the U.S., and they were incredibly informative and helped to put many of my fears at ease. For me, knowledge was power. It was just about the only element of control I had over the disease.
Honestly, I didn't have to deal with so many physical symptoms like you are experiencing so I can't sit here and tell you how I dealt with it. I'm assuming your doctor is aware of all your symptoms and has prescribed medications to help? Have you started treatment yet? I'm thinking that treating the lymphoma will help alleviate a lot of your symptoms.
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