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#1 Guest_billronm_*

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Posted 21 August 2012 - 09:59 PM

Hi Everybody,

   I've been trying to write this post for 3 weeks now, but I keep falling apart . Three weeks ago my husband Ron went for his overdue check-up  he has high bp. Since the end of May he just hasn't been himself.  I finally made a Dr. appt. for him. (which wasn't easy). He just never will admit when he doesn't feel good. They did his routine bw and the next day they called and said his numbers were up and they wanted more bw to check him for diabetes. This was on a friday so he had to wait until Monday to get his bw done the 2nd time. The next day they called back and said his hematocrit & hemoglobin numbers had gone up 5 points in less than a week and they want him to see a hemotologist, they also wanted more bw which he had done yesterday. They suspect a blood disorder. He has an appt. with hemo Aug. 29. That was the first appt we could get. All we know is his hemoglobin is 18.5 & his hematocrit is 51.  In 1985 he was working in construction and fell off a roof onto cement. They had to remove his spleen. But he recovered, and has been fine except for his blood pressure. I'm not used to seeing him laying around and sleeping so much. Normally he can't sit still and is always very active doing something...I'm trying so hard to keep myself together, and he knows this and he's worried about me, plus whatever could be wrong with him. I staying away from the internet, I know I'll read something really scary.

  I just don't know what to do. I can't function, he's the only reason I put up with all the crap from my other health problems. The waiting is the worst. I really feel bad for you Lucky. I truly know what you're going through. It's even worse when it's someone you love.                                                                Love to All Billie

#2 Susan61


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Posted 21 August 2012 - 10:20 PM

Hi Billie:  You know we are all here for you.  The waiting is usually worse than the problem itself in most cases.  Its a shame you have to wait till the 29th to see the doctor.  I know how you feel believe me.  My Gary has been with me through all my different problems, and then when he has a health issue I am like you cannot be sick too.

I cannot say anything about what his blood work is doing, as I would not know.  I am sure nobody else wants to guess.

All I can say is that we are all here all the time.  Its at times like this that prayer is my only comfort.  Don't start searching the Internet, that just gets you in more trouble with all the different information.  It might have something to do with the fact his spleen has been removed, but don't try to figure it out.  See what this Hematologist has to say.

Do you see a Hematologist/Oncologist?  Is Ron seeing your doctor?  My prayer list is getting longer and longer, but I know my prayers are heard.

Love Ya,


#3 Guest_billronm_*

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Posted 21 August 2012 - 11:11 PM

Dear Susan,

   I knew you would be one of the first ones to respond. Pammie called me the other day and I was crying so hard I couldn't talk to her. I know I'm always on your prayer list, you sure do have a long one. This just seems so surreal right now, I think we're both in shock right now, fear of the unknown. Ron is always so upbeat and making me laugh, everybody loves him. The thought of him being sick is tearing me apart. I already called my onc's nurse, but he can't get him in until September. And so we're going to this other hem at first and my onc said he'll treat Ron if we want him too, which is yes. It's just this waiting, don't those people realize how hard it is. I would gladly give up one of my appointments so that my onc could see someone newly dx, or in worse shape than me. I'm not crazy about the dr we are going to see, but at least we'll find out something, then Dr. Rothman (my onc) can take over.     Love Billie

#4 ChrisC


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Posted 21 August 2012 - 11:27 PM

Billie, dear one to so many:

Your turn to know that while it is scary for us to read of what's happening to your dear Ron, and to you, we want to hear all that you have to say, and to have our attention on you both. There is nothing more than that we can offer, but it is sincere and freely offered.

Keep us close, and be rested and strong for yourself, and for Ron.

You have so much strength and knowledge, so many supportive friends following your current trials: you are not alone, ever.

Go forth and conquer the beast attacking Ron!

And please, get lots of rest, too, both of you.


Be alert, but not overly concerned.


• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!



#5 Guest_billronm_*

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Posted 21 August 2012 - 11:43 PM

Thank you Chris.   Billie

#6 Pin


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Posted 22 August 2012 - 01:06 AM

Dearest Billie, I am so sorry that you and Ron are having to go through this right now - you are such a lovely person, I wish I could just take all the pain and worry away from you. You know that we all care and will always listen when you need help. I really and truly wish there was more I could do - I hope that someone tells you what it means very soon so at the very least, you know what you are dealing with.

Love Pin xxx.

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

#7 Guest_billronm_*

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Posted 22 August 2012 - 02:15 AM

Dear Pin,

  Thank you so much for your kind words. I truly don't know what to think or feel right now.  I already lost  my first husband, my son, I have cml, and I have been so blessed with another wonderful husband Ron. No matter what I'm trying to be thankful for all my blessings ,and for as long as I had them.            Billie

#8 TeddyB


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Posted 22 August 2012 - 05:20 AM

Im so sorry to hear about your situation Billie.

Whatever his condition (if any), i wish you the best of luck.

A friend of mine has a blood disorder, and he has to go and "get some new blood" once or twice every year, other than that, he is perfectly healthy and it doesnt effect his daily life at all.


#9 hannibellemo


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Posted 22 August 2012 - 06:26 AM

Dear Billie,

You always do your best to keep everyone's spirits high. I'm sad to hear you are so low right now! You and Ron are in my thoughts and I'm wishing the very best outcome for him!

My husband's turkey hunting buddy discovered a few years ago after becoming quite ill and needing hospitalization that his body was no longer able to process iron. After diagnosis and treatment he is doing fine. He has diet adjustments, he can't eat much red meat or anything else that is high in iron and other considerations but you would never know now that he had been so ill back then. I'm not saying that is what is wrong with Ron but to encourage you to imagine there are things he could have that will turn out ok even though he seems so ill right now.

I'm going to let you borrow my super hero signature because you need to remember that things are seldom as terrible as we imagine them to be. Also, because I hope it will make you smile...

Love, Pat

Anxiety girl!



"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>

#10 CallMeLucky


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Posted 22 August 2012 - 06:49 AM

Hi Billie - We certainly know the lumps keep coming don't they?  I am sorry you are hurting right now, I am keeping my hopes up for Ron and for you.  I think it is understandable for someone with leukemia to be freaked out at the thought of their spouse having to see a hematologist - that is going to bring up all kinds of feelings and fears.  As Pat pointed out, try not to jump to any conclusions.  The waiting is always the hardest.  Try your best to keep yourself occupied and wait until you have answers.  Many times these things resolve.  For us we have a harder time with that because it didn't blow over for us, it didn't turn out to be nothing for us, so now we assume it will always be bad news.  More often than not it's usually not really bad news.  So just give it some time.

Please let us know how things are going.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#11 pammartin


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Posted 22 August 2012 - 08:31 AM

Hi Billie,

I am glad you have your appointment, but like you said it should be today, the waiting is the kicker.  It is so much easier when we have to deal with things for ourselves, but when it comes to people we love, then we can't stand it, there isn't one thing we can do but wait.  Something people like you and I do not do well.  We want answers and help immediately, scheduling with the medical field rarely delivers this, I have begun to hate the words, 'first available'.

Just like I told you on the phone the other day, I am here for you.  And there are a boat load of people who posted before me who are here for you also.  While you wait, we wait with you, and please let us all what is happening.

I will be calling you soon, and you can cry all you want, I will probably cry with you, but then we will tell a funny/odd story that only happens to one of us and hopefully laugh a little also.

Positive thoughts and prayers to Ron and yourself


#12 Trey


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Posted 22 August 2012 - 09:27 AM

HIgh HCT and HGB is fairly normal for someone who has no spleen.  His numbers are not all that high.

It is more likely that he needs his heart checked out (stress testing, etc).

#13 Melanie


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Posted 22 August 2012 - 01:11 PM

Dear Billie,

As one of the readers in the background here and not one of your close contacts, I've followed your posts and have sympathize as well as laughed with you. Just want to add that you and your wonderful husband are on my prayer list too and hopefully with all the support and love coming your way, you'll find some comfort and peace. Please keep us updated.


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#14 Marnie


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Posted 22 August 2012 - 01:11 PM

Billie. . .thinking of you.  In crisis here right now, but will send an e-mail soon.  Try to keep your stress under control.  Don't let your imagination run away with you. . though it's easy to do.  The waiting is difficult, but hopefully on the 29th you will learn that this is nothing serious.  There's no way to know, and nothing you can do between now and then to change what the medical answers will be.  You CAN monitor your own reaction, though that's difficult to do. 


#15 Guest_billronm_*

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Posted 22 August 2012 - 01:37 PM

Hi everybody,

  Thank you so much. I knew that once I posted this all my wonderful friends would come to my rescue. Pat thank you for letting me borrow your super hero slogan. That is so me. I think I've written my own obituary about 5 times now. I write it then throw the paper away, I really should keep one copy, the way my memory is going the obit gets shorter every time.

  I haven't been able to talk about it, but now that I have I don't feel so alone. I just feel so helpless.

Trey, I know his numbers aren't that high, that's why I can't figure out why the hemotologist. Like you said I think they should check his heart, and kidneys right away. I'm surprised that after all these years since his accident that they haven't checked him out periodically. Whenever I make his appt. I remind them that he has no spleen. We go to different doctors, so I can't talk to his pcp like I can mine.

   Thanks again everybody,   Love Billie

#16 Skittles


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Posted 22 August 2012 - 02:05 PM

Billie, just wanted to add my prayers to all of the wonderful support from the group.  It's so true that the waiting is the hardest!  My imagination is usually far worst than the truth and here's praying the same holds true for you.  Hugs, Skittles

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Posted 22 August 2012 - 03:28 PM

Thank you Skittles & Melanie, It's so true we always think the worst. I have friends who just keep on reading, or gardening, or other things to occupy their minds and just say they will worry, when they know if they have anything to worry about. Boy I envy them.  Love Billie

#18 Susan61


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Posted 22 August 2012 - 03:37 PM

Marnie:  Let us know if your feeling better.  You were not doing so good the other day.  Thought Maybe you were on the road to recovery by now, but it does not sound that way.


#19 mariebow



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Posted 22 August 2012 - 03:48 PM

Billie, you know you are my girl, you have made me laugh in spite of.  I do not want you to over stress yourself,   Like Marnie said, you do not know what is going on with him yet.   You need to be there for him when he goes to get checked out and be strong for him and yourself.  I will hold you guys up in prayer.

#20 janne



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Posted 22 August 2012 - 04:38 PM

Bille, the one who makes us laugh when no one else could ....thinking of you and praying for you and husband as well. Sometimes getting referred to a hematologist is just to let them make a decision over a very benign issue, taking it out of the hands of the primary practitioners. Having worked as a nurse in a doctor's office I have seen referrals to hematologists with very good outcomes. I understand your worry. You have had a lot on your plate and of course you would be super concerned about your husband. Praying for a very good outcome for Ron. Keep your chin up !!....Take care, Janne

Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.


CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 

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