Diagnosed with CLL

[cemax]

I am a 70 year old male, diagnosed yesterday with CLL. My symptons are exhaustion, shortness of breath. They also referred me to a Gastronenterologist because my stomach is extremely bloated. They are saying to just wait and see before starting chemo. I have another appointment with the oncologist in 3 months.

[Newdawn Administrator]

Hi Cemax and a warm welcome to you!

I'm glad you've found us so soon after your diagnosis. You must still be in shock. I see you have a follow up appointment with the oncologist but have any tests been suggested in relation to the shortage of breath? That really needs to be investigated. I'm wondering with your stomach being bloated if your spleen could possibly be enlarged which could add to that breathlessness problem. However a gastroenterologist suggests the oncologist thinks it's a gastric problem.

I'm not sure if you have any further details as to your CLL staging yet cemax or whether it's all too new to you. My advice would be to insist on further investigations if you're experiencing worrying symptoms. Three months seems a long time. A haematologist who specialises in CLL would be a much better option for you.

Best wishes,

Newdawn

[cemax in reply to Newdawn]

Thanks for your reply. The Oncologist said I had an elongated spleen and a fatty liver. I have an appointment with the gastroenterologist in a week.

[Newdawn Administrator in reply to cemax]

Hope that goes well cemax. Please let us know how things go for you and ask for any information and support you neeed.

Best wishes,

Newdawn

[SeymourB]

Cemax -

Sorry to hear of your diagnosis, but welcome to the group.

I too have fatigue, shortness of breath and digestive maladies, including bloating and fatty liver, along with the CLL.

So far, I'm seeing separate specialists in addition to a hematologist.

I saw an oncologist on first diagnosis, and then switched to a hematologist, whom I saw every month or 2 at first. As the tests came back showing my absolute lymphocyte counts advancing slowly, we dropped back to 6 month intervals.

As NewDawn mentioned, bloating can be related to swelling of the spleen in CLL. They may order an imaging study to see it. If you find that you burp a lot, it may indicate some sort of gas from dysbiosis - unbalanced microbes in your gut. When the immune system cannot do its job, different families of bacteria and fungi can move in and ferment some types of food. Dietary adjustments can help a lot. I am sure there's other causes, too. The gastroenterologist should be aware of such possibilities. Be sure to mention if you are gassy at either end.

The fatty liver can be due to alcohol consumption, or general overweight. By itself, I think it's just a symtom. Your gastroenterologis will probably order a metabolic panel of tests that will tell more. I don't drink much, and know I need to lose 30 or 40 pounds. My gastroenterologist thankfully seemed rather unimpressed by my level of fatty liver.

The exhaustion can certainly come from both the CLL and the emotional impact of feeling and being ill all the time. The general mystery of it all makes me want to nap. I have depression and anxiety, and have a psychiatrist and psychologist helping me with that. It's hard to tell exhaustion from clinical depression sometimes.

Shortness of breath seems atypical in my own early stage CLL. In later stages, it can be caused by anemia that CLL may bring as it advances. It might be wise to consult a cardiologist, because shortness of breath is also a symptom of cardiopulmonary disorders.

Do take advantage of the Related and Pinned Posts.

Best of luck, and stay in touch.

=seymour=

[Quarry]

Are you seeing a haematologist who specialises in CLL? If not, you should get referred urgently, as a general oncologist is not what you need. They might not be looking at the right things. On the positive side, if the oncologist only wants to see you in three months (and they are a CLL specialist), it is an indication that your CLL is early stage.

As said above, the shortness of breath and bloated 'stomach' (?is it slightly to left as looking down?) could be a swollen spleen. Spleen can swell even in early stages of CLL (not only in late stages), as there are autoimmune complications that CLL triggers. If your spleen is taking out red blood cells, it will bloat and your HB will drop (causing shortness of breath).

What is your HB level? Are you seeing a CLL specialist?? What makes them sure it is your stomach that is bloated (ie why a gastroenterologist)??

As others say, shortness of breath could be other things too...most of which are nothing to do with CLL. So you do need to get to bottom of it

[cemax]

Last night was a bad one. Severe leg cramping, nausea, vommitting. Holding off seeing the Oncologist until after xmas. Not sure what all this means. also swelling around the neck and had some trouble swallowing yesterday.

[Cllcanada Top Poster CURE Hero in reply to cemax]

Try to get into your hemaetologist as soon as possible... I wouldn't put it off... this sounds more than standard CLL B symptoms...

If it happens again...I would head to the emergency....

~chris