Cancelled Bloods

[Vindicatrix]

Hi all, I am currently on Watch and Wait, having been diagnosed with CLL in June 2018. I was recently contacted by my haemotologist, (number three,) and given a telephone consutation during which she told me that I was ok for another 4 months, No mention of bloods or physical examination. I contacted my GP and was told not to attend the surgery but follow the advce of my consultant. This meant that I would have a total wait of at least eight months or more for my bloods to be done.. According to my friends in England they have had their bloods and other tests done at their GP's. In desperation I contacted a BUPA consultant and was given a quick bloods appointment, which I had today. It was very quick and efficiently done in a very sterile enviornment, and I was really impressed. I was happy to pay for this service as I decided that it was money well spent, and I do appreciate that not everyone will want to, or be able to afford to do this, but I do pass this on as an alternative if fellow sufferers so wish to do. Ron

[GMa27]

You are newly diagnosed. Unless you have had issues, waiting another 4 months would have been fine.

Becomes more important as you get closer to treatment.

But good to know you have options. 💕

[KatieBlue in reply to GMa27]

I was newly diagnosed once. Was told based on my labs that everything looked good. Was told I may never need treatment. Was told told the plan would be to have an appt with labs quarterly to start, the go to every 6 mos, then go to yearly and maybe even every 18 mos.

If I had skipped to 8 mos at the start, my lab values at that point would have still looked gaoid, still looked low. I mean I was told a bit condescendingly at my early appts that others have much, much higher counts than you, some into the 100s if thousands.

But the trend of doubling may not have been noticed. Even my labs on the morning of my bone marrow biopsy looked good apart from tanking platelets. But turns out my bone marrow was 90% CLL and I needed treatment.

Without those labs, I wouldn’t have gotten to the bone marrow biopsy. Without the bone marrow biopsy, I would t have known I was “having issues.” The symptoms I was having were ones that I was told were unrelated to the CLL. I also wouldn’t have known I was getting closer to treatment Because I was still hearing you may never need treatment.

We do need to advocate for ourselves. And peace of mind goes a long way, too.

[MsLockYourPosts Passed Volunteer]

Your doctor probably has assessed your situation sufficiently to judge that you would be OK waiting for labs to be done, but I think that you made a good decision, having them done now, as far as your peace of mind. Especially now, with all of the stress that comes with dealing with this COVID world, I think that it was money well spent.

[Quarry]

We are all having different experiences! I have just popped down to the 'drop-in' blood draw at my hospital (I live 10 mins walk from my haematology clinic, so am very lucky and use this for all my draws). No-one around site (it is usually crawling with activity): they have set up a 'pool blood draw service' (it is normally only one person - I suspect they have converted the hospital to a 'centre' for draws) that starts in a deserted car-park. Very efficient, very isolating, very professional - starting with the meet/great in the car park. I was very impressed. And I expect results via a portal later today.

Apparently I will hear 2 days before clinic next week if they will convert appointment to a tele-consultation. I suspect they will, as I am feeling good (and no lumps). My last consultation was by phone, so if next physical consultation will be in 6 months, that will be 18 months after my last physical consultation.

Vindicatrix, I hope your results are good. I suspect your consultant assessed you are doing well (CLL can be very slow moving), but having bloods evidence is great reassurance.