38 replies to this topic

[Billie Murawski]

Trey,

  Thank You I'll try to get a hold of his pcp right now, I called cc they gave me an appt. for Mar 23. I left a message with oncs nurse telling her what pcp said. I called cardiologist, oncs nurse,pcps nurse, I just called cardiologist and got a hold of someone, she is going to get the results from the lab, so  at least I got ahold of someone so far. The good part is he is at the cardiologist right now. I gotta get a grip. I had bcr/abl test last month I haven't even called to see how it was I figured they would call me if something was up. Two retired sickos living in a small ranch house with temps below zero is not good. This may turn out to be a murder/suicide situation.

                                                                                                                      Thank You  Billie

[Billie Murawski]

Trey and Gail,

Pcp nurse finally got back to me, she is the one who started all this, she said (" Oh well we just wanted to make sure he was still following up with the cc for his polycythemia") Why didn't she just frigging say that on Friday. I'm the one who asked them to check his hematocrit when they did the bw. It"s great 47. His thyroid is better now than it was last month, and the cc isn't concerned about his wbc. Plain English would have kept me from getting so scared all weekend. After 2 years of hell I finally start calming down then they give me a scary message. I have had it, remember this one' Don't Mess With Bill'. Thanks for hanging in there with me. Ron doesn't do doctors, tests, nothing, he hasn't had any doctoring since 1985 and that was because he fell off a roof and landed on cement! Just bw for his hbp twice a year. So these last two years have really been hard on him. He has to go to the dentist now or whenever he is allowed because he had a front tooth capped from his fall and the cap fell off when he was in the hospital,Naturally it's right in the front. He doesn't remember how he lost it. I didn't even know he had a cap. With all the meds he's taking right now he can't have any dental work done. I want to put a chicklet where that big gap is.  Well it's 5:00 somewhere and I'm going to have a glass of wine, it's tastes much better than a nerve pill.     Thanks again for being there for me, we're all alone but I always have my family on this board.                                         Billie

[Gail's]

Chiclet sounds perfect and tastes good! Just have to keep a big box of them around. If you still have the cap, they can maybe cement it back on. Takes 5 minutes and my dentist didn't even charge me!

[Gail's]

On another note. Just got my fis and bcr-abl results. Copied below. Anyone able to give me a clue on these? What I gather is normal garden variety cml. Another question is when is initial pcr drawn and normal repeat schedule.


Rule out BCR/ABL rearrangement
Specimen :Blood venous

DNA FISH probe


BCR/ABL - ABNORMAL

Summary and Methodolgy

Interphase FISH analysis using probes for the BCR and ABL1 loci showed
signal patterns consistent with translocation 9;22 (BCR/ABL fusion)
with a typical dual fusion signal pattern in 184/200 (92%) cells.
This finding is consistent with a diagnosis of CML.

A minimum of 200 cells were scored for each of the following probes
(unless otherwise specified).
t(9;22) Abbott ABL1 (9q34)/ BCR (22q11.2)

[Billie Murawski]

Chiclet sounds perfect and tastes good! Just have to keep a big box of them around. If you still have the cap, they can maybe cement it back on. Takes 5 minutes and my dentist didn't even charge me!

Gail he doesn't remember where or when he lost it, it could have been the er or ncicu or cccu or rehab I didn't notice it until he got home he was pretty much out of it for almost six weeks.  I guess we'll be making my dentists mortgage payment pretty soon.

[Trey]

Gail,

Your FISH shows 92% of your WBCs are leukemic.  No PCR results shown.

 

You were diagnosed a month ago, so I assume the FISH was done not long after diagnosis?  What drug/dosage are you taking?

Edited by Trey, 23 February 2015 - 08:45 PM.

[Gail's]

Diagnosed 1/22/15, on gleevec 400 mg since 2/2/15. A newbie. Can you tell me if pcr and bcr-abl are the same test?

[Gail's]

FISH and bcr-abl done on 2/6, results on 2/13

[Trey]

So this FISH was done 4 days after starting Gleevec.  You would not expect much after such a short time, and the results do not show much at that point.  Both FISH and PCR look for BCR-ABL, which is a leukemic gene.  But they are different tests.  See this:

http://community.lls...l=+cml +testing

 

A re-test in a month or two will be more useful in showing progress.

[Gail's]

Thanks Trey. I figured out that pcr vs bcr thing. I'm glad they did fish for a baseline

[chrissy778]

I am really excited and wanted to join this post, just received a phone call from my Dr and my PCR went down from 0.054 to 0.002 IS I am so happy right now my husband and I cried when I hung up with the Dr. Words can not explain.... I never thought I would come this far or be this happy with my blood results....

[mlk210]

Congratulations Chrissy!!!

[gerry]

Happy dance in order.

[chrissy778]

Thank you, Yes happy dance in deed....

[acl]

Congratulations!

[Billie Murawski]

Congratulations Chrissy, It's wonderful for the newcomers to hear your great news. You'll just keep getting better and better and pretty soon undetectable!

[chrissy778]

Thank you Billie, everyone on this site has become like a second family to me. A place to share our worries, our good news and bad. I am thankful to everyone who I have met here and would be lost with out you guys....

[PhilB]

 541-happy-squirrel-dance.gif   43.43KB   0 downloadsCongratulations!  Get down and boogie!

[Darlene_Jack]

Congrats Chrissy, it is nice to hear the good news.  Celebration is in order, whooo hooo!!!!!