Sending hugs and prayers Billie!
I really need my friends now
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Guest_billronm_*
, Aug 21 2012 09:59 PM
56 replies to this topic
#41
Melanie
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Posted 04 September 2012 - 06:06 PM
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)
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)
#42
Antilogical
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Posted 04 September 2012 - 06:10 PM
Hey, Billie. Coincidentally, a co-worker has that disease. He has regular blood tests, and he has a pint of blood removed from time to time. I always know when he's due for a "bloodletting", because he gets a bit irritable just before his tests indicate that he needs a treatment. Otherwise, you'd never know there was anything wrong. Anyway - just wanted to let you know that it seems like it can be very manageable.
Regards to both of you - who needs additional stress, right?
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
#43
Happycat
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Posted 04 September 2012 - 06:48 PM
Billie,
Well, I'm glad you know now what the problem is and hopefully, it will be easily treated. It sure is a kicker, isn't it? Who woulda thunk you'd both have blood disorders? Makes you wonder about what's in your water, what's in the basement, what big power lines are nearby....
I'm kinda in a similar situation. Emily has a rare disease called EE. Okay, fine. But now her older sister is showing the same symptoms. And to really put a point on it, I've got some, too! So now there are two more of us who have to go through the same months long work up. I keep looking at that crack in ceiling from the ice dam we had, and thinking there's a bunch of black mold up there making us sick! At least for me, there's a chance the symptoms are due to gleevec side effects. Not so for Nat and Em.
I hope you get a treatment plan for Ron soon andthat he'll be feeling much better quickly. I've been thinking of you lately, and will definitely say some prayers for you.
((((Hugs))))
Traci
#44
Tedsey
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Posted 04 September 2012 - 08:50 PM
Big hugs to you Billie. Thinking of you and sending the very best wishes your way. May your husband heal real soon.
Tedsey
#45
janne
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Posted 04 September 2012 - 09:13 PM
Billie,
Big hugs Billie ! Prayers for you two also. Remember you have a gift to lift people up....that would include Ron ! He has the best lifter upper by his side !!! Tell him we are all cheering for him .. !!!
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.)
#46
Susan61
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Posted 04 September 2012 - 09:16 PM
Hi Billie: I knew something must be wrong, and thats why I had sent you the personal message. I did not expect what came back for Ron. I have been through a lot of things,but nobody can know what each individual feels for their loved one. You have a diagnosis, and I always say the Not Knowing Is Worse Than the Actual Result. You can work now on whatever has to be done for Ron. Just like our CML, make sure you get a doctor who deals with this disease on a regular basis. Hopefully your Oncologist/Hematologist can handle Ron's case along with your CML.
Just know how much love and prayers you have right here with our group. I hope you can find some comfort in knowing everyone is here for you and for Ron. Also, keep in mind that there is so much more knowledge in this day and age for these diseases to cure them or at least keep them from getting worse.
I am always around anytime.
Susan
#47
hannibellemo
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Posted 04 September 2012 - 09:18 PM
Dear Billie (and Ron),
Well...that sucks! From what I've read, though, it sounds very manageable and if there is one thing you can do, Billie, it's manage! You will have Ron whipped into shape in no time, boy howdie! ( I have no idea where that came from, it just rolled right off my keyboard).
You take care, get some rest - it sounds like you're in good hands and heaven knows you certainly know the blood testing routine and can lead Ron through it with your eyes closed.
It goes without saying to keep us posted.
(((Hugs)))
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>
#48
Susan61
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Posted 04 September 2012 - 09:24 PM
Hi Traci: So sorry to see your having some problems with your girls. I do not know much about EE, but that its related to the Esophagus and Allergies I think. I hope you get to the bottom of the problem that is causing this.
We never know what is brewing in our own homes. I hear all these nightmares about water problems etc.
They test our water on a regular basis, and say its all okay. I put a filter on my faucet. I could not stand the taste of my water without it. My daughter said she could taste it too, but my husband never noticed a thing. We do not have well water, we have City Water. I still wonder all the time.
My Prayers and Hugs go out to you also. I hope you can get a hold on this right away.
Susan
#49
nathaliece
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Posted 04 September 2012 - 09:29 PM
Billie,
I am so sorry that you and your husband have to face this challenge but am glad you have each other and the support of this CML board. Lifting you both up in prayer for strength and peace.
All my best,
Nat
#50
Guest_billronm_*
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Posted 04 September 2012 - 09:31 PM
Thank you everybody, I think I felt that hug today, my stomache was only in knots for half the day. I have to stop trying to research this, all I'm doing is scaring myself. Found a site that said it might have to be treated with hydroxea and it could turn into aml. It's not radon because our house is on a cement slab. This is a pretty wet area, and our soil has a lot of clay so there aren't too many basements around here. It's described like cml without the ph chromosone. They don't know the cause, but it's not genetic like the ph ch. My grandfather (my moms dad) was an electrition and he helped build the atomic bomb. He didn't know it. I guess most of the people who helped build it didn't know . My grandfather just dropped dead when he was only 45. I just wonder how much radiation he was exposed to. Who knows maybe that's how I got this phil chrom.
Antilogical, thanks for the heads up. If Rons treatment is like your friends, I'm going to keep Midol in the house all the time.
Traci,you must be one strong woman. We can handle our problems, but when it comes to our children, I don't know how you keep yourself together. I know you had a lot of problems when you carried them too.
KUDOS to you. And everybody else out there, I know a lot of you are really struggling, but you took the time to cheer me up. Thank you so much Love Billie.
WOOF WOOF I can't believe you actually figured out how much it costs you to stay alive. Did you ever think of taking up needlepoint? I've been working on making Ron an Eagle for about the last ten years.
#51
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Posted 19 September 2012 - 11:31 PM
Hello to all my dear friends,
I'm so sorry I haven't kept in touch. And to all my dear friends who e-mailed me please forgive me for not getting back to you. I really don't know what to say. Ron went to the onc and he did a lot of bw and he dx him with polycythemia vera, they took a pint of blood out of him, then the onc ordered ultrasound tests on his stomache. When we went back to the onc a week later he said that his hematoctic went down to 47.1. At the first visit he told him he would probably have to get a pint of blood removed every week until his nos came down. Now he tells us his ultrasound came back normal, and because his hematocrit went down so well we don't have to go back for 2 mos and get bw and see him again.And he has to stop eating red meat and foods high in iron, he has two much iron in his body.So he says he wants him to see a lung doctor. We went to the lung dr. he had a breathing test, and a chest x-ray. They both were fine. The lung dr. ordered a cat scan for this Friday, Then 2 more tests in Dec.
Ron has had a mole on his neck since before I met him. The onc said he has to have it removed. I've been after him to have it removed for years. Ron said after all these tests are over he'll have it taken care of. Yesterday we received a letter he has an appt oct 31 to see a doc to remove it.
I can't believe it but he is in a bad depression. He is the last person any one would think that this could happen too. I've been through it twice, and unless you have really suffered through a bad depression you can't even imagine how horrible it is. All I can do is help him the best I can. It's breaking my heart seeing him like this. He is the strongest person I have ever met. He has always been my rock. Now I have to be his. I just hope I'm strong enough. He just woke up again, so I better go. He says I make him feel safe because I understand everything he's going through. It's not a MAN thing but it can happen to anybody, I'm sure a lot of men out there have gone through this, please don't hold it in, let us help you.. Love Billie
#52
nathaliece
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Posted 20 September 2012 - 06:21 AM
Billie,
I have been thinking about you and your husband. I am so sorry that the two of you hare going through this. Ron is so lucky to have you. Please take care of yourself. I am sending positive thoughts your ways and praying for strength for both of you.
All my best,
Nat
#53
janne
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Posted 20 September 2012 - 01:19 PM
Billie,
Thank you for taking time to post in the middle of all your concerns. Still praying for you...you will indeed be a huge help to your husband even with this depression he is going through. You hang in there !
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.)
#54
Judy2
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Posted 20 September 2012 - 07:57 PM
Hi Billie,
I looked up Polycythemia and from what I gather it seems as if many people can do really well with this disease. From what you wrote it seems that Ron may be one of the lucky ones, you guys certainly need a break. As you know, when you are initially dx with something you go through all sorts of emotions, depression being one of them. As time passes, somehow, we begin to come to terms with our new reality. Billie, you are so strong, I know you will be Ron's rock. I also know Ron isn't the only one who needs a support system right now, you must be completely overwhelmed yourself. Please remember we are here for you.
Hugs and prayers to both you and Ron,
Judy
#55
pammartin
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Posted 20 September 2012 - 09:15 PM
Billie,
Thoughts and prayers to Ron and you. Always here if you want to talk, vent, yell, holler, or swear. All of the above would be fine too. I talked to Ron the other day, first time I chatted with him, sorry I missed you but nice to talk to Ron.
Thinking of you, take care
Pam
#56
Guest_billronm_*
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Posted 20 September 2012 - 10:03 PM
Thank you so much everyone, once again your support has helped me, just knowing that all of you are here for me,doesn't make me feel so alone. Ron gets a cat scan tomorrow, I'm sure it will be fine, everything is just so confusing. After they took that pint of blood out of him, 2 weeks later his hematocrit was still down in the safe range so he doesn't have to go back to the onc for 2 months. If his no's are up again they will take another pint of blood from him. At the first onc visit he told us he would have to have a pint drawn once a week until his nos are in the safe range. Now he tells us, come back in 2 months and he sends us to a lung doctor. His chest x-ray was fine and he passed the breathing test with no problem. So now the lung Dr. sends him for a cat scan. And he scheduled 2 more lung tests that they aren't doing until December. In other words nobody really knows why his rbc is so high, So their checking everything out which I'm so happy about, but to drag it on and on like this.UGGG! It wasn't that long ago that in a case like this they would admit you to the hospital and run all these tests, and you would probably have a dx the day you left the hospital. Not anymore.
I do have good news I had my bw since I have been on 50mg Sprycel since June, It is good my iron is still low but it's higher than it was. So hopefully next month when I get my bw it will be even higher!
Once again, thank you so much all my virtual family. And to all the new members of our family, I'm keeping you in my prayers also. Love Billie
#57
Susan61
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Posted 21 September 2012 - 10:56 AM
Hi Billie: I am glad your getting some good answers for Ron, even though you still do not know everything. Its like I said about the Not Knowing is Worse than the Results Itself. For some reason once you find everything out, you just go from there to take care of it. This could be why Ron is so depressed. Constant tests being done can wipe you out.
Its rough when one person is sick, but then when the healthy one gets sick also its very hard. You have a lot of love and prayers from everyone, and it will get you both through this. So glad you posted a update. Praying todays Scan comes back good for Ron.
Love and Prayers
Susan
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