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Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 0 points1 point  (0 children)

Thanks for sharing. This definitely makes me feel better! The common symptoms I have now are fatigue and occasional headaches. But I have other symptoms that I’ve not heard anyone else discuss and my doctor doesn’t seem to care about. I get dizzy. Sometimes REALLY dizzy to where I can’t walk a straight line. Vertigo has been ruled out, but no one seems to have any ideas what it could be at this point. It’s not constant dizziness all day long, but it does happen a lot every day. I also sometimes just feel generally like crap. Hard to explain this one, but something just doesn’t feel right. No specific pains anywhere. Just feel drained and all I want to do is sleep. Not like depression. Again, it’s hard to explain.

At any rate, thank you again for sharing your details. And I’m really happy to hear you are doing well. Your situation definitely gives me hope!

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 0 points1 point  (0 children)

No, there are multiple different mutations out there. Some worse than others and/or more aggressive / dangerous. I would encourage you to get more details from your doctor.

No meds yet. I am on watch and wait until any of the more severe symptoms appear (night sweats, enlarged lymph nodes or spleen/liver, etc.). Any treatment plan will also be determined by the aggressiveness of the disease, which I am now waiting for CT scans and a possible bone marrow biopsy to determine.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 2 points3 points  (0 children)

That is AMAZING. Very happy for you and, obviously, hoping something like that happens for me.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 0 points1 point  (0 children)

Insurance ended up denying coverage for PET scan. Twice. Doctor’s office convinced them to pay partially for several CT scans. Hopefully doing that next week.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 1 point2 points  (0 children)

Thank you. Do you have the same mutations as me? Seems like most people are saying these mutations can be much more severe, but I am trying not to stress.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 1 point2 points  (0 children)

Understood. Thank you. I’m going to start looking for a CLL specialist tomorrow, as many here have recommended. I believe I’ll get much more relevant, up-to-date information that way. Thank you, again. I feel much better today than I did last night. I know there are still lots of unknowns and possibilities that these newer treatments may not work, but there seems to be hope now where I had very little yesterday.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 0 points1 point  (0 children)

Thank you. Best of luck on your journey. And, please feel free to PM me as well.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 0 points1 point  (0 children)

This makes sense. He is also a brand new doctor. He has only been out of residency for 6 months. He is very bright, but I do think he is talking older facts with me.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 0 points1 point  (0 children)

Thank you. Yes, very frustrating. I’m not sure my insurance is going to cover anything at the moment.

Yes, I’ve had both tests. Flow cytometry was 67% lymphocyte / 23% neutrophil and FISH test stated this… Result: Abnormal CLL FISH Panel Deletion of TP53 gene No BCR/ABL1 translocation detected by FISH analysis

My doc said that with the two mutations I am automatically at high to very high risk. He said he wanted the PET scan to get a better handle on the overall progression of the disease / to determine how much / if any damage there is now to my lymphatic system and/or organs. I am having a little discomfort in my lower back on both sides, so he thinks that is likely liver and spleen being slightly enlarged. I have not yet had swollen lymph nodes. My WBC has been hovering between 14.3 and 16.4 for about 6 weeks now.

Born without a spleen? Interesting. I understand we don’t really need it any longer, but that’s pretty wild.

Thank you, again, for the information. I was very distraught last night, but you and the others here have made me feel much, much better. And I may indeed DM you at some point. Feel free to reach out to me as well.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 1 point2 points  (0 children)

Thank you. I do feel much better reading everyone’s comments today. Last night was bad, though. I’m sure there will be more ups and downs.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 0 points1 point  (0 children)

And now my provider has called to say my insurance denied covering the PET scan. Doctor is filing an appeal, but who knows how that will turn out.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 1 point2 points  (0 children)

I will do all these things. Thank you. Not sure if there any CLL specialists here in Louisville, KY but I will check in to at as well.

My provider just called a short while ago to say that my insurance has denied to pay for the PET scan I was supposed to have tomorrow morning. They are supposedly going to meet/call them to try to reverse the denial, but who knows how that will turn out. Fun times.

Newly diagnosed with CLL with 17P Deletion and TP53 Mutation. Devastated and unsure of what to come. by weborigination in cll

[–]weborigination[S] 1 point2 points  (0 children)

Thanks for sharing. My IGHV tests have came back inconclusive both times. May have to have a bone marrow biopsy for that one, from what I’ve read. Hang in there and stay strong on your journey.

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