How do negative messages about CLL you... - CLL America Support

CLL America Support

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How do negative messages about CLL you read on the Internet affect you?

tclementi profile imagetclementi21 Voters
13
I'm somewhat affected but I filter out things and know we are all different and have good and bad days.
6
I'm not affected - i'd rather know the bad and be prepared
2
I'm very affected and need to learn how to copy better with negativity
1
Other- I'll leave a comment explaining
3 Replies
Ducksoup profile image
Ducksoup

I'm not much affected because most of the negative information does not apply to me. When I was diagnosed, a family member in the cancer field assured me that I should relax. CLL was not usually fatal. My (beloved and highly respected) oncologist gave me a similar message, reinforced by the slow growth in my numbers. Both individuals assured me that treatment options were excellent and expanding quickly. Now, after eight years, I'm undergoing treatment, and judging by my numbers, treatment is working. My fatigue over the past year has been difficult and increasingly debilitating. But I am grateful every day that I have compassionate and effective health care, that the treatment is working, and that I can look forward to at least a few more post-treatment years in remission.

tclementi profile image
tclementi in reply toDucksoup

Well said!!

venk_46 profile image
venk_46

i was shocked the day my oncologist told me that I was a CLL patient after seeing my reports. I I was assured by him that though not curable ,but can be managed . he explained about the developments/research taking place for better treatments.. Still under watch and wait since three and half years. I am from India , sad part is not much research is done here. I am yet a come across a good CLL expert.This forum had given me an excellent boost and feel greatly relieved . At times when I read some negative reports , I do get depressed , but after reading positive reports and advice of CLL expert doctors in this forum I feel great.

I hope that I get a better treatment here when I am due. My numbers are increasing with enlarged lymph nodes in neck and stomach ,but no 17p deletion,mutated,no night swetas, no fatigue, no fever , not much weight loss.

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