CLL Support Association
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Cause of various symptoms

My husband has CLL, diabetes and a pulmonary embolism. He is a Vietnam Vet and agent orange positive. He recently started running a temp every day, has night sweats and severe headaches. He has spent almost a month in the hospital and no diagnosis. Tested for arteritis-negative, but has all the symptoms. I should take him back to VA hospital, but he does not want to go. Any thoughts or info will be appreciated.

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So sorry to hear about your husband's difficulties, jerrygel. I really don't have any advice except to say that fever and nights sweats are typical lymphoma B symptoms (although that doesn't mean that is what they are in this case - but they could be). And the B symptoms are just part of the package. In my case, I simply lived with the B symptoms on and off for 2 years until beginning treatment. But of course, since your husband has multiple health conditions, it is hard to know which symptom is caused by what. Fever and sweats in some other health context could be more serious. Frustrating that after a month in hospital, no diagnosis was possible. Good luck to both of you.

kim

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Thank you for this information and your interest. Yes it is very frustrating to try to make him feel better and nothing seems to help. I give him sponge baths and tylenol to bring the fever down and sometimes ice on his temples helps. I feel so sorry for him and so helpless when he feels so bad. I do try to keep him hydrated. I keep ice water next to him and remind him to drink often.

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Also... With the night sweats, be sure he is staying well hydrated. Dehydration can cause or contribute to headaches.

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So, the new symptom is the fever. Is there a nurse in the oncology department you can call. We were given a long list of symptoms that IF/when they occur, we should call. Fever is one of them. But our doc might be more willing to have ppl call the nurse. They can be difference (the docs). If no calls, I think an appt is warranted. But I am going by what our doc thinks.

Hugs, Linda

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Yes we can call the nurse and they are most helpful. Usually they say bring him in and we know he will be admitted, but he has spent so much time in the hospital and I can give him his medicine here. It helps me to know that his symptoms are probably related to his illness and not some new thing we are not aware of. He does have appointments with oncology, dermatology and rheumatology next week. Thank you so much for your interest and I will let both of you nice ladies know what we find out.

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Hopefully your husband's appointments will lead to some answers. Does his VA hospital have someone with a special interest in CLL? If not, can he be referred to a CLL specialist outside of their system, at least for a consult?

Symptoms with no answers are the hardest for me to deal with. Watching your husband go through it is a caregiver's nightmare, especially since he does not want to risk dealing with "lockdown" again. My father was like that when ill. It was very hard on my mother. Let us know how the appointments go. Hugs from California!

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This is a nightmare. Last night his temp went to 104.2. I was so scaired, praying and sponging, not knowing whether to call an ambulance or try to get it down myself. I know the dangers of a temp this high, but don't know if I want to start all over with new providers and see him go through the endless testing that, so far, has revealed nothing. I am trying to keep him comfortable until tomorrow when we have an appointment. I plan to ask them to please put him back on Prednisone. I am also hoping they might start some kind of treatment for the CLL. His WBC has been from 84 to 237 and last test was 87. The headaches are constant.

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Hi have some some concerns with your husbands position. Im a Vietnam veteran and had a very late diagnosis I had been checked though DVA for some 12 years with blood before consulting a private hematolagest who came back with a positive for CLL first test. I believe the reason the condition wasn't picked up before was due to politics with in DVA.

The reason for my CLL , I believer agent orange, or other agents in our location have direct links To Cll. I Believe your husband may feel better in consulting some one out of the DVA even if its just for your Primiary tests .

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Agent orange does cause CLL. If you are not receiving benefits, I urge you to apply.

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Jerrygel -104 is a serious temperature, and it is better that doctors see his full symptoms without any fever reducers like Tylenol which would mask his symptoms. As much as I know you don't want to start over with new providers, maybe this case needs a fresh set of eyes. Please keep us posted.

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Update after appointment with rheumatology clinic. He is on steroids and has had no temperature or headache since starting them. He will also be on a new med for Great Cell Arteritis. We will also be seeing hematology oncology on March 9. Thank you all for your support and I will keep you posted on new developments.

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