CLL Support Association
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Recommendation...chemo

Finally got my second opinion @ Moffitt. He agreed with my oncologist that chemo is recommended. His concern is the anemia. I was happy to see it went from 9.3 in March to 9.9. No treatment to improve anemia. Moffitt ( Dr. Pinella) said no rush. Should get my plan started with local oncologist....said 4-6 months I should start treatment. Recommended after 3rd or 4th round to have BMB done because in some cases chemo can be stopped. He said they don't like to recommend chemo over 65. He said I was a good candidate for it.

I am mutated, 13q deletion, no 17p, no trisomy 12, Zap 70 negative. WBC up to 242k...not sure what else to share from labs.

Have appt with my local oncologist on Thurs.

Anyone have similar FISH/ test results that has had chemo?

Alice

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So Happy. A chance for remission! Some mutations are good. I think yours are. But hopefully someone who knows more will come along and help us out!

Wishing you well!,

Linda

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Good luck to you on the next leg of your journey, Alice!

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Sounds good and you have every chance of a long remission. Wishing you all the best and a smooth recovery.

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I completed FCR a year ago with hypermutated trisomy 12 CLL. I was diagnosed with severe anemia (4.6 at diagnosis) and needed treatment as soon as the tests all came back (about 6-7 weeks). Meanwhile I needed weekly blood transfusions. The anemia lasted for 4 months and subsided about 2 months into the FCR. It was difficult at times, but I got through it and I'm sure you will too. Best wishes...Richard

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Richard...did you have a port? How do they put that in?

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Ports are installed by surgery into the chest, Hickman lines are placed in the upper chest and PICC lines are installed into the arm... all need to be flushed. They all have advantages and disadvantages...

I have had a PICC line for almost 6 months and get a weekly dressing change and a saline flush... from my travelling community nurse Max. 😀

Hickman

en.m.wikipedia.org/wiki/Hic...

PICC

en.m.wikipedia.org/wiki/Per...

Porta cath

nurse.org/articles/what-is-...

Often they just start an IV, each round of treatment, it depends on tne condition of your veins...

~chris

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GET THE PORT ! ! !

It is installed with a local anesthetic and mild sedation (not put to sleep but in a happy place). It is placed just under the skin above the breast but below the collarbone and a small catheter goes from it to one of the large veins leading to the heart. (A Picc also goes to the large veins so no difference there).

The convenience of the PORT outweighs everything else. Why risk blowing out your veins with the chemo in a new vein each time, or having a PICC line that means weekly dressing changes and having to live with the wires hanging out all the time and the associated restrictions to bathing and other activities?

I have had the port and love that I can do whatever I want, wherever I want without restriction except for the 3 days of chemo each month. (shower, swim).

It gets removed later the same way it was put in. No big deal at all.

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Sounds like a good plan! Thanx!

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Yes, my hematologist recommended it because I needed the weekly blood transfusions and the monthly FCR infusions. The port was inserted under my chest and the procedure was done with local anesthetic along with something to help calm me down. I had it in for about a year and a half. It was removed in February and that procedure was much quicker and done with local anesthetic. I was very glad to have it since it freed up my hands when I was getting transfusions/infusions and the nurses never had to search for a vein. You may not need it in your case, but that was my experience.

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What do u mean by local anesthetic...like a twighlight, like colonoscopy? Or were you awake? Thanx

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They injected the area of the chest with a numbing substance, sort of like novacaine, and they injected something to calm my nerves. It didn't produce a twilight affect, more like an anti-anxiety effect. It was not a bad procedure from my point of view.

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In my case, they did a local freezing like at the dentist (local anesthetic) AND a twilight like you would have for the colonoscopy for the insertion. I will have removal next week, so cannot answer the second part, but it should be less than or equal to the original insertion with a minimum being the local freeing.

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That sounds like pretty much the ideal chromosomal profile for FCR and hopefully the anaemia will improve in order for treatment to commence.

I’d be quite happy to proceed with chemo on that basis GM and wish you well with whatever is decided.

Newdawn

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Hi Alice,

Except for having the same WBC, no 17P, and hemoglobin under 10, my prognostic markers are exactly opposite of yours. I was told that I am NOT a good candidate for FCR because of this, mainly because I am unmutated.

I wish you the best in your treatment!

Robbie

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I have 13q and mutated. Saw Pinilla at Moffit as well. I like him. Just be aware that chemo can give you a long remission but is associated down the road 8-10 years with a risk of bone marrow failure. I am young (57) and when my time comes that treatment is necessary I will probably choose ibrutinib or another small molecule inhibitor for that reason. The choice between chemo and the small molecule inhibitors depends on your individual case but I have struggled with that decision for some time and just wanted to bring that point to your attention.

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I’m glad I didn’t get the port since my FCR chemo is paused due to neutropenia and there are lots of veins and the 2 rds j had never had a problem with my six total injections or weekly bloodwork :) it’s a personal choice obviously ....

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