Hematologist visits.

[meemsdream]

How often do you see your hematologist? I am due for a visit on Monday and have my blood work done and then see him every three months. I am WW stage 0, and have been for 2 years now. Does that seem to be about right?

Maria

[Newdawn Administrator]

That sounds the same as my consult frequency Maria and after 3 years he put me onto 6 monthly consults. In reality I'm not sure if 6 monthly appointments are too infrequent because I feel that my GP is essentially managing my CLL.

Best wishes,

Newdawn

[Hidden]

When I was WW stage 0, I would see an oncologist and an endocrinologist every six months. The visits were timed to be every 3 months. The endocrinologist would run a CBC with differential. I would send this test to the oncologist. I was going to the endocrinologist for thyroid cancer follow-up. He tested to make sure that the papillary cancer had not returned. I still see him every 6 months. I could probably see him once a year. Since I have already paid my out of pocket by early January, there is no additional expense.

[ygtgo]

Your Consultant is looking to see if there is any pattern developing in your blood counts, hence a test every 3 months.

W&W stage 0 after 2 years .... We like that.

I was diagnosed aged 47 in 2006, and have not as yet needed treatment. ... my experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.

'Stable' CLL is good .... if you happen to have CLL!

ygtgo

[sun_flower in reply to ygtgo]

Same as me ytggo, count myself lucky,Maggie

[Ned1 in reply to ygtgo]

Hi Ygtgo

Just curious about your experience with blood counts after 2 years. I was recently diagnosed. Have yours remained completely stable or have they gone up and down but not trended upwards?

[meemsdream]

Thank you Newdawn, greenblue, and Ygtgo. I appreciate your answers. Sometimes I wish it was 6 mo., but then I guess it would just give me more time to worry about the results! I just get nervous about results a few days before I go and see him. I suppose that is pretty normal.

Maria

[mpaull]

I am the very same ... Stage 0 ... CBC w/ diff every month and visit every 3 months. Age 57 with CLL for 2 years. No changes in numbers. Changed diet, no alcohol, lots of water better/healthier foods. Oncologist thinks the disease won't do me in but most likely be from some type of infection years down the road. I can live with that. Wait and watch. Mitch.

[meemsdream in reply to mpaull]

I have been told the same thing Mitch. It's not the CLL but the infections we will get because of our immune system being so compromised. I hope it's waaaaaaaay down the road for all of us. Maria

[Saska-Jul31]

Hi! I was just diagnosed nearly 4 months ago, am on W and W and am on 6 monthly blood tests. Guess I am stage 0 and have been told to contact the hospital if my nodes swell up.

[RZ8983DV]

Initially I was seen after 3 months, then it became every 4 months for about 2 1/2 years, and was after that reduced to every 6 months. I was initially diagnosed in 2008 , have been in W and W since then with relatively low WBC and ALC counts (in 30s)

[annabelle63]

I see mine every six months WW O

[Carnyorth]

I'm W&W after diagnosis in 2015. I have no symptoms and am Stage 0. I am on yearly reviews. That seems fine. If I have a problem I can speak with the specialist nurse at the haematology dept. They are leukaemia and lymphoma specialists so I am relaxed.

[brad8]

Hi meemsdream I to was diagnosed 2 years ago and am at stage 0. My hematologist has increased my consultant visits from 3 to 6 mounths as my blood work seems stable. Hope this gives light to your seeing your hematologist Brad

[meemsdream]

It looks like most of us are seen between 3 and 6 mo. Thanks. Tomorrow is Dday.....Yikes. :0)

Maria

[Peggy4]

I was diagnosed in May 2015 I have now been discharged to my own GP and have blood tests every 3 months. Should there be any significant change, I will then be referred back to my consultant.

I must admit though, for peace of mind, I would like to see a CLL specialist.

Peggy

[ladyprescott]

Maria, I'm seen every six months. On W&W, however, my reds are now at the just above low normal stage. Don't know what it will be in November when I go back. Dr. O'Brien says if they are low she will start me on Prednisone. Can anyone tell me how that would help?

[AussieNeil Administrator in reply to ladyprescott]

Prednisone is a steroid which reduces inflammation and damps down auto-immune disease, so it should reduce the loss of red blood cells from your immune system attacking them. It's not an uncommon treatment for CLL induced auto-immune complications.

Neil

[ladyprescott]

Thank you Neil. Always appreciate your replies. I understand it also causes one to gain weight. Ugh!

[scarletnoir]

I'm a bit different in that I didn't really have a W&W period - from diagnosis to next visit a few months down the line, the CLL had progressed so rapidly that I was scheduled for treatment.

However... after a very good remission, I was seen every 3 months to begin with, but now it is 6 months as the disease has yet to show any signs of returning - hope it stays like that!

[meemsdream in reply to scarletnoir]

I sure hope it does too. Best of luck to you scarletnoir.