*update* have managed to contact nurse practitioner, they are arranging appointment thank you all so much for giving me confidence I was not being a drama llama x ....
Husband 73, not seen consultant for over 2 years, now showing worrying symptoms, should we contact gp or consultant
You haven't shared those worrying symptoms, but if there is any suspicion that they are CLL related, your best option is for your husband to see his consultant. I say this because CLL is rare. An Australian Leukaemia Foundation survey about 10 years ago found out that GPs see perhaps 6 lymphoma cases in their entire career. While CLL is the most common adult Non-Hodgkin's Lymphoma, this gives you an idea how unlikely it is that your GP will be knowledgeable about CLL.
Neil
Thank you
I am surprised your hubby hasn’t seen his consultant in two years. Do you have any paperwork from when he was last seen. Maybe you could call and speak to that department. Hope all goes well
Thank you, my next call is to hematology, severe bruising night sweats, exhaustion and 😔
I was in hospital during the first lockdown 2 years ago as I had hemolysis, since my discharge I haven’t seen my consultant, just telephone consultations, at the moment it is every 4 weeks.
I understand the pressure but sometimes only face to face is best how can you feel for enlarged lmphs see bruising etc over the phone
Hi hogglez,My husband was diagnosed late 2020 & is watch/wait. All virtual appts. w/prominent center in philadelphia. They can see his nodes, know his lack of symptoms & look at his bloodwork results. So, yes, sometimes face to face is essential, but depends on each case.
I would get in touch with your consultant. I also haven't seen a haematologist in over 2 1/2 years, due to have my first face to face consultation for a long time in September
It sounds important to contact your consultant to tell her/him about the symptoms and to get an appointment.
Throughout lock down, I gave bloods which were sent to my consultant, who then phoned to discuss the results. Six months ago, I had an in-person clinic visit with her. She followed that up with bloods and a phone call 3 months later, and I am now seeing her again in person in August. One of her questions is always whether or not I am having night sweats.
Good luck
In your position I would write a polite note to Consultant, copy the GP, setting out when you husband last had contact with the Consultant and the change in his condition since that date. In the circumstances you describe I would send that note first class. I would also try to ring the Consultant's secretary explaining that you have sent them a note and ask if they could give you the Consultant's email address so that you can send it by email as well.
I would go see the consultant as soon as practical. The bruising & fatigue are concerning. Sounds like his blood counts are getting quite low. Wish you the best ...
Hello, it sounds like some significant changes have occurred with your husband’s health. The good news is all the amazing treatments are available to help him get sorted. Please keep us posted as his health action plan gets put into place. And, importantly, always know you can come here with any questions, comments or concerns and our faithful community will do our best to support you both. We stand at the ready. Carolyn
I am also UK based and see my consultant face to face every 6 months (apart from one in June 20). I highly recommend you contact your consultant direct. Good luck.
Hello hogglez
I would suggest seeing a face to face consultant as there are a lot of things your consultant can not do over the phone. I see my H/O every 3 months face to face because she checks lymph nodes, spleen enlargement and listens to lungs which is not possible over phone. Blessings.
Without reservation, if you have CLL, you must see a CLL subspecialist, to get appropriate treatment. Other wise, you are a set up for inappropriate work-up and treatment.
See various write ups on this at the CLL website. I as well as others have written up multiple clinical studies in layman terms about how critical patient education and getting treated by someone who is up to date on all the evolving aspects of the disease.
Thx
Dr Green MD and relapsed CLL patient getting ready for another round of treatment. I want the best even if I end up paying for a lot of it out of pocket.
Consulting a CLL Specialist
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