Advanced Member
Posted 16 December 2011 - 06:56 AM
Well today is the day, I see the hematologist for the first time since diagnosis in October. I am hoping for a BMB (Never thought I would say that!), but I know I will be having a serious of blood tests, I am to go early to the lab before appointment. Today it is my goal to get a detailed list of results for everyone to decipher them.
Have a great day!
Advanced Member
Posted 16 December 2011 - 07:12 AM
Good luck, Pam! Is this a new doc, or the old one?
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Guest_billronm_*
Posted 16 December 2011 - 03:05 PM
Dear Pammie,
If you are a good girl they might see you one more time. Good luck kiddo you must be feeling better if you can push a refridgerator through a to small doorway. If they give you anymore s--t I might have to pick you up on our way to Fla. and drop you off at the CC Center in Tampa. And if you start growing anything else I'm going to tell Bob to build a small barn, and put you in it and feed you only oats and hay. And take you to the vet. You've been tested for everything else have they checked for worms? Hee Hee Sorry I haven't answered your e-mail yet it's coming. It's been crazy trying to get ready for this trip and making sure my son has everything he needs. Trying to get my meds early. My bp would spike so I would have to stop everything and just sit. I got the okay from my gp yesterday reluctantly, but my bp is in a safe range and there are Doctors on Sanibel. Ron kept saying we don't have to go. He has to go the poor guy needs a break from me.
And shelling on Sanibel is fantastic that is how he relaxes. We're just about packed and the car is pretty much loaded up. We were going to leave tomorrow but Ron said we should just stay home tomorrow and relax and get a good start on Sunday. I think he's right.so that's what we're going to do.
I'll get back to you tonight for your good news. lol Billie
Advanced Member
Posted 16 December 2011 - 06:06 PM
Good luck with your visit today Pam! I don't know if I've said hi before but I've been following your journey on here and I've been a bit quiet lately... so hi, and good luck!
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 16 December 2011 - 06:37 PM
Billlie, strange you should mention the barn, Bob already said that was where I was headed if I grew anything new. Thanks Pin for the support, I appreciate all your help with this darn disease.
Advanced Member
Posted 16 December 2011 - 06:48 PM
I am not sure when I will recieve the rest of these results but since I finally have a Lab report in front of me, I am going to post what I have. My platelets have dropped almost 100,000 in the past two weeks, but I restarted the Sprycel at 140 mg, so I am thinking that is the reason. One thing I still worry about (Although my husband said it is all about interpretation, Dr. Sahovic once again made it quite clear because I had such a difficult time with intial response, he asked again about siblings, I have none that are exact matches, so he said he is going to put me in data base so arrangements can be made if needed. I was fairly depressed about the entire visit until my blood work results came in and he seemed quite happy with my progress. He did once again say I was the only patient he and his collegues have encountered wtih high platelets and almost normal white count with CML.
WBC 3.76
RBC 3.34
HGB 11.4
HTC 33.5
MCV 100.3
MCH 34.1
MCHC 34.0
RDW 27.8
Platelet 128,000
MPV 10.6
Neutrophils Pending
Lymphocytes Pending
Monocytes Pending
Eosinophils Pending
Basophils Pending
Reticulocytes 1.59%
reticulocytes - Absolute 0.053
B2A2 B3A2 E1A2 Interpretation, Director review, background - Sent to reference lab
Thanks
Advanced Member
Posted 16 December 2011 - 08:21 PM
Hi Pam, does that mean your platelets and wbcs are holding steady?
It sounds like good news so far...
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 16 December 2011 - 08:35 PM
Hi Pam: Your husband has a good point. First of all my WBC and RBC run around the same as you, and my platelets have been at 128,000 for a few years, and they do not worry about them unless they drop below 50.
When I was first diagnosed, I had every doctor I saw getting me ready for a BMT. See how your blood work is when you get it all back, and if it is holding stable then just keep doing what your doing. Your doctor might just be extra cautious in case they need the information at some point for a BMT. He did sound like he was not going to jump to anything after he was pleased with your blood work. I think your going in the right direction. Keep us posted.
Susan
Advanced Member
Posted 17 December 2011 - 08:23 AM
It is the one I have been seeing, I am still in a battle to have approval for going to another doctor. The battle with American General also rages on, seems like my policy will cover everything I am not having to experience at the moment. I have lost track of the original during this changing of houses, as soon as I get things organized I am going to find my policy and see if I can start a ruckus. I am thoroughly annoyed to have to be fighting to see a doctor who specializes in my disease, and the idea I am denied benefits because I cannot find my policy at present! Oh how I hate hate hate moving.
Advanced Member
Posted 17 December 2011 - 08:39 AM
Thanks everyone for your comments and support. I believe the doctor was under the impression I would be already in the process of transplant, after my rough beginning. This is why he scheduled me for the appointment, after thinking it is not three months, I was diagnosed on the 6th of October, so this appointment was only a bit over 2 months. Although he said it was too early, the PA ran the Ph tests, so I will have some idea where I am compared to the last results I posted quite a while ago.
Patience and acceptance, I thought I was beginning to learn them concerning this disease, but this week I also realized (even after reading many posts from others) that although the fear does subside, when you visit the doctor and he speaks of transplant almost constantly while in the office puts me into a tailspin of great proportions. The comfort of this is people in accelerated and blast phase can come back and be healthy is something I hold on too, and these feelings will subside I suppose like the last ones that were so intense, and next month they will return. I guess that is why I have xanax. One thing I still do not understand, why I was diagnosed in accelerated, I have posted my beginning results and all of them indicate I was/am in chronic. Onward the battle continues to find doctors my insurance company will approve and I will be comfortable with.
Have a great day!
0 members, 1 guests, 0 anonymous users
