One year from diagnosis/surgery/BR chemo start - CLL Support

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One year from diagnosis/surgery/BR chemo start

momof12
momof12
12 Replies

We one year ago on Nov 12th..I had a doctor look at me and say "You have a lymphoma". He sent me to another doctor at the Cleveland Clinic. On Black Friday last year...I had my first of 2 surgery's to determine what type of cancer I had.

On December 18th, I was diagnosed with CLL and started chemo the following Monday because the doctor was scared I would lose my airway since my nodes were so enlarged in my next. 6 month of chemo and they said I was in remission after a scan.

Well, December 5th I have to get my next scan...I'm very anxious. I hope that everything is still looking good. I'm 11q so just waiting for things to come back around again. I try to live my life like everything is OK...I don't let the cancer bring me down.

I just have to get past this next scan>>>>

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Bubnjay1

Good luck Momof12

Always a worry when tests and results are due. How have you been feeling lately ? If you are feeling well that is a good sign in itself.

Try not to get too anxious although I do understand, Dec 5th will soon be in the past.

Sending big cyber hugs, let us know how you get on.

Bubnjay1

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momof12
momof12
in reply to Bubnjay1

Ive been feeling completely fine..I will take that as a prediction that I am!

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ap64

Remember worrying won't help or change anything. Try and accomplish something or a bunch of little things before the scan. Every time you start to worry do a task and you will have a whole lot of little things done instead of worrying. Works for me might be helpful. Will say a prayer all goes well.

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Shortcake2
Shortcake2
in reply to ap64

Love that idea, cause I'm a big worrier.

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Justasheet1

Momof12,

Do you see a CLL specialist? I'm 2 years out of BR and feeling fine and thankful everyday. No scans for me till I need treatment. I'm also 11q and unmutated.

Jeff

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AussieNeil
AussieNeilAdministrator

CLL specialists nowadays rarely use CT scans unless they are required as the conditions of being in a clinical trial or there is suspicion that large nodes may be interfering with some vital organ/body function. The risks from the additional radiation, which is not to be taken lightly given we have a higher risk of secondary cancers due to our CLL compromised immune system (which is further compromised by chemo), is not generally considered to be outweighed by the benefits.

Unless you have worrying symptoms or really want the peace of mind, I'd ask your specialist if a scan was really necessary.

Neil

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AussieNeil
AussieNeilAdministrator
in reply to AussieNeil

More on when CT scans are appropriate for CLL patients:

1) In a previous post, neurodervish referenced this CLL Society post: cllsociety.org/beyond-the-b...

2) The Value of CT Scans in Chronic Lymphocytic Leukemia

Panelists: Alessandra Ferrajoli, MD, The University of Texas MD Anderson Cancer Center; Richard R. Furman, MD, Weill Cornell Medical College; Thomas J. Kipps, MD, PhD, UC San Diego Moores Cancer Center; Shuo Ma, MD, PhD, Northwestern University Feinberg School of Medicine, Susan M. O’Brien, MD, UC Irvine Health; William G. Wierda, MD, PhD, University of Texas MD Anderson Cancer Center

(And that's a line up of some of the best CLL specialists in the world)

onclive.com/peer-exchange/c...

Neil

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terryI_uk

Good luck with scan next week, hope feeling well is a sign all is well, best wishes, Terry

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MsLockYourPosts

When I was diagnosed (2003) a baseline scan and then scans every two years was the norm at UCLA. I have only had a PET since my two year scan - after treatment for breast cancer ended in 2008.

I agree that it is worth asking if the scan is necessary and if so why. Your doctor may have a good reason for wanting it, but if you had a scan after treatment and there are no new issues you possibly could skip this one. That being said, everyone here knows about scanxiety and white coat syndrome. I was joking with my doctor about it at my last appointment. He thought it starts when you are in the room dealing with the white coat (doctor's point of view). Patients pain of view - it starts when you know that that time is coming, days to weeks ahead of appointments depending on the particulars of the reason for the visit.

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scarletnoir

I'm a little surprised that you are having a scan - in the UK, usually the follow-up checks are based on blood tests and maybe a bone marrow check.

I think it is completely normal to be stressed in any sort of check, but if you have had a good remission (you probably know this already) then you will get used to the monitoring, and will worry a bit less as time goes on...

Best of luck for the results, and if the news is good (you feel well, so that's a good sign) you should be a bit more confident in future (if not exactly worry free!) when the checks come around, so long as your body is sending you good signs.

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