CLL Support Association
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Appointment tomorrow

Well tomorrow is my follow up after my PET/CT scan and after my (almost) 10 days on anti-viral medication for the "bumps" on the back of my head which I have now come to learn are nodules. But I am thinking positively because the main one my roommate said changed shapes (she said it didn't go down in size but it's rounder versus longer) but it doesn't hurt like ____ and I can actually move my neck (I've been able to move it much better since about Sunday).

The question becomes I haven't a clue what to ask the actual Oncologist tomorrow about anything else besides those 2 things. I know he'll go over my blood work (curious what it'll show this time, since it changes drastically each time) and go over the scan.

I'm curious to know about these bumps but he'll probably say "we'll never know, what type of virus" or something.

I'm so tired of the back and forth...In Nov. before my scan things were stable, had the Scan and we were looking at treatment soon blood-work becomes stable for a couple months we're back to stable then blood work drastically changes we're back to looking at discussing treatment when I come in Feb. then I have this unexpected virus and get blood work done and we're back to blood work looks great, and since it looks like it's a virus not CLL related we're back to watch and wait.

Don't they get that I am PHYSICALLY AND MENTALLY EXHAUSTED, I wake up in the middle of the night drenched etc.?

Anyway, I am just a little nervous because of my apt. tomorrow, thanks for "listening" I may not get home in time to post tomorrow night but I'll try from my phone.


2 Replies

Rebecca... everything will be fine... tell your doc about the night sweats... I look forward to your post game results...



Good to hear that you are feeling a bit better Rebecca. While it has been a rather stressful time for you these last 10 days, you've learnt a great deal about what you need to have in place to ensure that you are looked after well. So there's definitely one thing you can ask your oncologist: "What should I do differently next time?" If you do nothing else, please review your experience this last 2 weeks and get put in place what you can so you don't have to suffer this stress again.

One of the hardest things about living with CLL I find, is the uncertainty. I've also found that blood test results don't always reflect the way I feel either.



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