Outstanding third opinion.

[showdog]

I had to get a third opinion because the first doc said at the first visit no treatment until see symptoms. When I went back after bone marrow and lymph node taken out she said I needed treatment but I feel great. I didnt feel comfortable with that so found a cll specialist. Much more knowledgable. Told me from looking at test from prior doc and I look and feel great. He believes no treatment is necessary. He was well versed in cll which made me alot more comfortable. He also said the bone marrow alone was sufficient to see where I was and shouldn't have had to have lymphnode removed. He is the 3rd doc and well worth the search.

[Kwenda]

VERY sad that you should have to go through all this run around..

Unfortunately there are many doctors who just are not up to speed with our CLL, they have not been trained and do not see many CLL patients to have learnt what to do.

Your report above just shows HOW VERY IMPORTANT IT IS TO TAKE THE TIME TO GO AND FIND A TRUE CLL SPECIALIST.

Well done you for taking the extra time and effort....

Dick

[showdog in reply to Kwenda]

Worth every penny

[stunned]

I have little, no, i have no faith at all with the 3 doctors at my GP practise. They have messed me about, sending me for blood tests, giving me anti biotics for swollen lymphnodes and even suggesting a lymphnode was a fatty lump.

At the hospital when it's time for a check up, there are usually several haematologists in the clinic and you get which ever one picks your notes up next. Again this is fraught with inconsistencies and difference of opinions and different appointments in that one will examine me and another wont.

This all came to a head in December when one doctor said i needed treatment but the doctor i saw the following week said i didn't meet the criteria for treatment and to come back in 3 months.

Since the middle of December i have had one infection after the other which resulted in me ringing my nurse practitioner who got me an emergency appointment with the doctor leading the Flair trial. A carrier bag full of medication, a chest xray, swabs for flu, a full examination and a follow up appointment the following week with him.

He has now said that due to the inconsistencies and being messed about he is now going to be seeing me at every appointment, which are now every 2 weeks given i am teetering on the brink of treatment. No he isnt a CLL specialist as such, but he is leading the Flair Trial and seems to know more about CLL than any of the others.

Well done for going with your instincts and getting another doctor.

Anne

[Jm954 Administrator in reply to stunned]

Anne, if he's leading the FLAIR trial and looking after you then he's the Dr for you!

Wishing you all the best

Jackie

[stunned in reply to Jm954]

It relieves some of the stress at what is a very stressful point in my CLL journey, not quite needing treatment, but CLL is playing havoc with my health. I can't plan anything more than a week in advance in case i have to start treatment, which i know is coming but he is doing his best to keep me off it for as long as possible, without compromising my ability to handle treatment.

Thanks Jackie, the support from people on here really is exceptional and very much needed at times.

Anne

[showdog in reply to stunned]

Thanks and good luck to you

[showdog in reply to stunned]

Happy you are getting consistancy now