70 year old male, diagnosed in September 2016 with CLL.
Totally exhausted, night sweats, leg cramps etc. seems way too soon to be having symptoms. Also seeing a surgeon tomorrow because of a large lump that is growing under my right arm. Seems like things are happening way too fast.
Further to my reply to your earlier post, I'm concerned that you are seeing a surgeon, when I think you may be better off seeing a CLL specialist. Frankly, your primary doctor is unlikely to be experienced enough in CLL to refer you to an appropriate specialist. While I'm not medically trained, I've learnt enough from reading of patient experiences, CLL support societies and specialist reports to state that:
1) A GP doctor on average sees perhaps 6 cases of Lymphoma in their entire career. CLL is just one of the Non-Hodgkin Lymphomas.
2) CLL patients are better off seeing in order of preference, a CLL specialist, a haematologist specialising in blood cancers, a haematologist/oncologist. Note I've omitted oncologists (generally they specialise in solid tumours) or surgeons.
You say you were only diagnosed 2 months ago, so yes to see things happening this fast after a CLL diagnosis is not typical. Questions that come to mind are:
1) Is your CLL diagnosis correct? (via a Flow Cytometry test on your blood or less often a biopsy of an enlarged lymph node)
2) Have you been staged?
3) Do you know your prognostic factors? (Knowing these isn't essential until you need treatment, but will give you a guide on how indolent your CLL should be.
4) Have you had any scans to identify what the lump is likely to be?
Answers to these questions would be most accurately answered by a CLL specialist and if you say roughly where you live, this community should be able to direct you to specialists that can give you far better health care than it appears you are having so far. If the lump is a swollen lymph node, treatment will shrink it with no need for surgery.
Neil
Thanks for your reply. Both my primary doctor and Oncologist recommend seeing the surgeon. They are concerned by how quickly this lump has grown.
I would think a PET scan might be in order or if not available a CTscan...
Enlarging nodes if that is what is happening need proper diagnosis... by a hemaetologist.
~chris
How much experience has your oncologist had with CLL or leukaemias/lymphomas? I'd seriously suggest that you ask for a second opinion and explore Chris's suggestions.
I agree please listen and read again what Neil is saying good luck
Another vote for getting another opinion from someone with a lot of experience with CLL. One thing that you don't want to do with any of the leukemias or lymphomas is to start the wrong treatment and "destroy the evidence" so to speak. You want the person starting your first treatment to be able to get a very clear picture of what is going on without surgeries or drugs interfering with the original picture.
Great advice from Neil, your CLL needs staging to identify if you are ready for treatment.
The advice to get further tests and seek an opinion from a CLL specialist are absolutely right.
Having said that... as for the speed of progression, first of all it's very likely that you have had undiagnosed CLL for some time (I did, and so have many others). When I was diagnosed, I was told that (with any luck) it would progress slowly on watch and wait - but it didn't. I soon had swollen glands in my armpits, to add to those in my neck which led to the original diagnosis. CLL can certainly progress pretty quickly. Time from diagnosis to first chemo treatment in my case was 5-6 months. The good news: I had a complete remission.
If your disease follows a similar path, I do hope you get a similar result.
Echoing what other people said. Please see a CLL specialist. If this is progressing quickly, you need to be in the best hands. By the way, my nodes went from just noticed in December, 2015 to huge including the largest one which was in my stomach and was 5 x 10 cm by June, 2016. I've never had a PET scan. All of my scans have been CT scans, so don't be worried if that's all you can get.
70 year old female with CLL here and can certainly relate! I get totally exhausted, night sweats and leg cramps. But my brain is still functioning, albeit with effort after little sleep. I agree with Neil...always so insightful. Today I'll be holding you in my highest thoughts.
My CLL was diagnosed in 2013. My mistake is I went to a regular oncologist and not a CCL specialist. I did the W/W for three years and steadily got worse. Local oncologist made no moves so I went to the Mayo Clinic in the US. They immediately put me on Gazyva for 6 months. My life and health changes dramatically. My WBC went from 116,000 to 2500 in just one treatment . No side effects. My point is to see a CCL specialist who see people like us all day long.
I started out with a hematologist/oncologist who told me I had CLL. I then went for a second opinion in my fairly small community and was told the same. Then, through HealthUnlocked was reading about seeing an oncologist who specialized in CLL, so I found one at UCI in California. I have since become acquainted with another doctor there that is renowned in this field. I would say, find a CLL specialist if you are able to do so. They have all the knowledge necessary for this disease. My best to you. Carole
Good to see you back Carole!
CLL, leg pains, high colesterol, sweats, exercise isn’t helping anymore 😢
ME/CFS or CLL Fatigue
Is Fatigue a symptom of CLL?
Fatigue and SLL
