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My CT results!

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Well I spent the day at Rochester and after much anxiety and worry am happy to say that my CT was completely clear thereby sustaining my remission. MD said there was absolutely nothing. I was so very relieved as I am sure all of you can understand. I was in one sort of treatment or another for a year and 10 months and have been in remission since last November. This was my first check to see if that remission is holding and it did! I don't need to return for four months at which time they will do another CT to check again. He said they need to check more frequently during the first year. Also my blood work has all returned to normal which he said was excellent as they generally expect that to take a year. I have been very lucky and blessed. I wanted to share this with all of you to let you know that there is hope, there are things that can be done, there are answers. I will take it one CT or PET scan at a time. I did ask the dreaded "what if" question and was told there are tons of options left if that should occur. I know so many of you are in "phase 1" of this journey which is achieving remission and for that I wish you all well. It can be done one way or another. I and others are in "phase 2" which is battling to keep that remission. I know there is a "phase 3" for some which is repeating "phase 1" but there are new things coming all the time and I wish you all well. Thanks as always for your support and God Bless. Mary

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Oh thats so wonderful Mary, I will be praying for you, I had my P.E.T. Scan yesterday, I'm hoping for the best, bracing for the worse! Take care Vinny

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Oh thank you so much. I so know that feeling of hoping and praying for the best while at the same time needing to keep myself prepared for the worst. My family, God bless them all, don't always understand this. They say the usual things like think positive etc and of course I do but I'll be damned if I will be caught off guard. I think mentally we have to investigate our worst case scenarios to be able to cope with them if we have to. I will pray like crazy for good results for you. So hard to wait for those results. I had to wait only 4 hours yesterday but it felt like a year. Of course I only had the 4 hours to mentally prepare too because once I got up from the CT table it was a brand new game....like OK you have my pictures signed, sealed and delivered and there's nothing I can do but hope! It is tough but so are you and I know you get it...the mental gymnastics that are so very hard to describe and so exhausting. It's such a huge part of this disease and can probably only be understood by those that have done it. I hope and pray that none of my family or yours ever has to understand it. Mary

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I am so glad you got great news! Congratulations................WOO HOO!!!!

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Thank you so much. I have a 4 month pass, I'll take it.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

So well put,I wil be ready either way!

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

That's all you can do and it will be enough.

britta
Posts: 107
Joined: Apr 2010

Mary,

Been praying for you and am so happy for your good news. Wow, that is wonderful re your bloodwork all being back to normal already. You are one healthy specimen now girl. How good that must feel after such a long road of different treatments. I will be going to Rochester Monday, August 30 for my first bloodwork - almost five weeks. Don't know what to expect, at first I had so many side effects, I was worried, but now am just tired. Am anxious to see where I stand right now.

Stay healthy and thanks for all your support to all of us.

Britta

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

And I will be praying for you too. It will be so good to see where you are at. I was tired for a long time. I started to notice improvement at the 6 to 8 week mark, a little at a time. I asked him if after having Zevalin, were my future options limited? He said not at all and in some cases could be used again. He mentioned,just in chatting, another drug that is showing lots of promise to use in place of Rituxan. It is called Bendamustine(sp?). I believe it has been around awhile being used for other things and they now know that it works just as well for some types of Lymphoma but has far less side effects long term and is better tolerated. So as far as the future for us all there is always going to be something. But for now I will wait here happily in the present. He also said he now has Zevalin patients hitting their 10 year mark. As I sit here happily in the present I want to be one of those in the future!! God Bless. Mary

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I am glad you asked. Makes me feel much better. God I hope someday to make the 10 year point! Sounds awesome.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

I know right? We all deserve it. Take care.

britta
Posts: 107
Joined: Apr 2010

I'm so elated for you!! WOW, ten years, that is so awesome. Hope I recover as fast as you did. I kind of worried about waiting so long for a blood count, but I guess they're pretty good at estimating when it will go down. Yours didn't stay down long, did it? Wasn't it just a week or two? I pray for you and everyone that we will all have a cure someday.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Your memory is excellent. My blood work started sliding out of range about week 2 or 3 and peaked during week 4. By the time I had my first followup at the 6 week mark they were normal. I am fortunate in that I can tell when my counts are low or struggling to recover because my legs ache really bad when I walk or exert any energy. For awhile I thought I would have that forever but suddenly one day just gone and hasn't returned. All the way through Chemo and the Zevalin I had this so it became my gauge. Good luck tomorrow and please let me know how it turns out. Mary

britta
Posts: 107
Joined: Apr 2010

Hi Mary,

Well had my first bloodcount today at almost 5 weeks. Hemoglobin 10.1, WBC 3.75 and Platelets 50,000 (down from 189,000 July 28). The platelets count kind of shook me up, doc said we start worrying at 20,000. Frankly, I think he was a little worried today. I'm going to be doing a lot of praying that I start bouncing back real soon like you did. I don't think your numbers went that low though, did they?

He talked quite a bit about infections today, mostly from your own body. Mouth and nose sores, sinus infections and sore throats. Didn't tell me what to do about them though. You had some sinus problems, didn't you?

Well I'm beat, going to bed early tonight, I know you're an early riser, so I thought I'd let you know.

Britta

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

So glad to hear from you. So OK..hemoglobin is holding. So no worries there. Wbcs are low, which is expected, I honestly don't recall what mine went down to but I do know they took a hit and I used all of the precautions that we're already used to. I tried to stay out of the public, washed my hands constantly,lots of hand sanitizer also. As to the platelets again to be expected. Mine went down to 100,000 or so but that was from 220,000 so percentage wise we are closer. Not much can be done about speeding those platelets along on our own but allowing our bodies to rest a lot while it works to rebuild is always productive. If they had felt that you required any intervention they would have or will do it. I did not get any infections after the Zevalin but had a couple of nasty colds and sinus infections during Chemo when my counts were low. Antibiotics cleared them up but it took longer. You are probably past your peak and on they way to rebuilding so hang in there. Remember it can take a long time. I was told up to a year. When do you get rechecked? Mary

britta
Posts: 107
Joined: Apr 2010

Mary,

Well again, you made me feel better just with your common sense approach. Also after a lot of prayer last night, I felt the burden lift. This battle is really the Lord's so I better let him do his work. Meanwhile, I will rest, my friend brought over a ton of books and am currently reading the fourth in a series of ten. Reading really keeps my mind off things. I'll be having my blood checked here every week and then go back to Mayo in eight weeks for another scan. Little bit different schedule than yours.

I'm so glad you are well and feeling so carefree. Isn't that wonderful, and all of our goals. As always, thanks for encouragement.

Britta

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Mary,
Great news! Keep that remission going. You will find that as time goes by, so does the length of time between checks. Congrats to you..
Lisha

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

And I sure hope so. You hang in there too and God bless. Mary

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

You made my day Mary! Makes me feel strong for battle next week after hearing you are still in remission! I'm sooooo very happy for you. Hope you will celebrate this wonderful news!
Love...Sue

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

It means so much to hear from everyone. After spending two years enmeshed in this battle I sincerely want everyone to know that it can be done and there is freedom, at least for short periods of time, in the beginning. As I said somewhere else, I have a four month pass and I will take it. I will be praying like crazy for you too. Good luck in the upcoming week. Oh, to get started and have some of it behind you, it will be a good feeling. God bless, Mary

truckingalong
Posts: 444
Joined: Aug 2010

Mary, I am so happy to hear of the good news - this brings me a lot more hope for myself!!

Liz

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Thank you and I wish you all the best. If we can all add a little hope to the mix there just may be enough to go around. Mary

yesyes2
Posts: 461
Joined: Jul 2009

Mary,
I'm so very happy, glad, and estatic that all went well for you on Friday. Remission is such a wonderful word, and continued remission is even better. I know how stressful these tests and doctors appts are, so with the great news you must have been soaring with happiness this weekend.
To continuing good news for all of us.
Leslie

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Mary,
So glad to hear your Good News! Everyday brings something new. Hope that you and your family celebrate the news in style.
Dave

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Thank you so much and yes I was very happy and thankful but was so exhausted from the stress of it all I just folded. I celebrated with much sleeping and relaxing!! My husband wanted to go out to dinner and celebrate but maybe we'll do that this coming weekend instead. I told him I was celebrating in my heart. LOL Mary

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