I apologize if I am incorrect with the name of the testing results below. My husbands first CLL Dr 5 years ago had him on watch and wait. When he received the following results Tumor/ Prognostic Markers: CD38+ ZAP70+ Trisomy 12.
IgVH unmutated, I researched the results which were very concerning to me being they show a much poorer prognosis. When I called the Dr asking why the results were not explained to us she stated "We don't go by those results any longer". My husband got covid from the workplace end of May 2023 and went to the ER and his admitting diagnosis's were Covid, fevers, septis , pneumonia and tachycardia. He said he felt good upon discharge but in a matter of time he started getting more out of breathe with stairs and walking up the driveway. He just kept saying it was long Covid and pushed it to the side being we were soon to be moving to PA. I told him I was very concerned with his weight loss, coloring and muscle loss (diligent at the gym but losing a lot of mass) My daughter and I arrived with the movers to get a head start on 10/20/23 and my husband just had to finish out his last few days of employment and was so excited to join us on the 26th. I received a call from his employer on the 25th and I fell to the floor when they told me he suddenly collapsed and passed on the way to the hospital. We are now alone in PA. 💔🥲🙏🏻
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Debcap61
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Thank you so much. Is it usually protocol for the doctor to go over FISH Panel results with the patient? And also has anyone been told "we don't go by them any longer as a prognosis marker".
I don’t know the details because my markers were different. With the newer treatment options, those markers are not really relevant anymore. Treatment for CLL has improved greatly over the past decade and continues to improve each year.
I am not a doctor but I believe your husband was like many people, just trying to push through a tough time when perhaps it might have been better to stop and see if something serious was wrong. Getting ready for the movers to show up is a very stressful time and having Covid so close to your moving date likely upped the stress.
In any case, I am very sorry you are facing getting resettled without your husband and while grieving for him. Grief is an expression of your love for him. Please feel free to continue to reach out to this community for love and support.
Deb, I’m so very sorry to hear of the sudden, devastating loss of your husband. You must all be grief stricken especially during Christmastime and with so many plans in the pipeline. Sending condolences and best wishes to you all at this very sad time.
I hope you don’t mind but I’ve updated your title to reflect this because I don’t want people to miss your sad update and continue answering FISH questions. Hope you don’t mind.
Deepest Condolences 💐 No doctor has gone over my FISH test results & I have never questioned it much either, just to be honest. I only know that I’m IGVH unmutated with intermediate status🤷🏽♀️
I am so sorry for your loss. I can't imagine how awful this situation must be.
Regarding the test results, what is explained can vary, and this is true for any medical specialty not just a FISH report for CLL. Doctors generally do not go into great detail on varies aspects of tests. "You have a broken leg" instead of the perhaps 15-20 specific details of an Xray, "you have diabetes" instead of discussing the various tests done to get the diagnosis, "you have pneumonia" instead of listing all the detailed symptoms. Some patients want to know more, will ask questions, or are healthcare professionals who know "what type of questions to ask" to have a provider naturally respond in greater detail.
So simply being told his CLL diagnosis without going into great detail on some of the various tests is not an error or mistake. I understand you asked more, and were somewhat pushed off, but your husband needed to be the one pushing for a fuller explanation, not you as the wife. Even if you were sitting in the room with him at the time, the patient needs to advocate for answers unless the other person has a medical power of attorney. Some offices will accommodate a spouse's questions when they are both present, but some won't. Your husband needed to insist on explanations.
I'm not a doctor, just a pharmacist with CLL who has studied it extensively since my diagnosis. His markers or statistical prognosis, would not often be relevant to diagnosis or treatment of other diseases. Other than "he is immune compromised and has a chronic leukemia of his lymphocytes."
I wish that doctors office had explained at least a bit more, to tell you that the older data talking about "prognostic factors" is changing in this past decade. People like me who had a "poor prognosis" with "bad markers" are now beating this disease back, there are new treatments. So when they told you "we don't really discuss these much anymore" it may be true, but I wish they had spent at least some more time explaining why, to lessen your stress. Not knowing why the prognosis isn't immediately a concern would hopefully have decreased the stress a bit. This is a very odd disease, and the word "cancer" has most people thinking "wait, doesn't this need to be treated ASAP? Especially if one is reading about historically "poor prognosis" markers.
I’m very sorry for your loss Debcap61 - must’ve been awful to receive such a shock over the phone. I hope you’re doing okay.
Regarding FISH and other testing - my doctor provides minimal information about my test results, and it’s only when I ask questions that I get more detail or an explanation. He’s always very busy so I can see why he isn’t very forthcoming initially - it’s not ideal, but I guess many healthcare workers are under a lot of time pressure these days.
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