New Member
Posted 25 February 2012 - 07:59 PM
Hang in there Sunshine,
You are too young to be going through this. You are sweet to be raising money for relay for life. My family did a marathon in Bermuda for ending strokes a couple of years ago. I was hoping to do the century ride this year for Leukemia, but life is getting in the way. But, I think that you just inspired me to try to get in a marathon this fall. Thanks, and take care, Jack
Jack
Advanced Member
Posted 27 February 2012 - 07:51 PM
Hi Sunshine, welcome to the site 
I'm Pin. I hope that you are going ok today - is your sister a match? Let us know how you are going 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
Guest_billronm_*
Posted 27 February 2012 - 09:49 PM
Hi there Sunshine,
Forget the clap joke, that was really tacky. I haven't been myself lately (this is really the tacky part, I have been on Sanibel Island for the last 2 months visiting my husbands family and I have been miserable.) They are wonderful people and my husband enjoyed himself so much with his brother and 2 sisters it was all worth it. But I was sick most of the time, Picked up the flu and then caught a cold. And you know we don't get little bugs we get terminators. My husband has been so wonderful helping me deal with this cml, I was bound and determined he was going to see his family this year no matter what.
But we're finally on our way home, We left Sanibel at 8:30 this morning and now I'm somewhere in Georgia. I knew where I was when I checked in but I brought a bottle of wine with me so I can't remember where we checked in. I'll let you know when I pay the bill in the morning. Sincerely Billie
New Member
Posted 29 February 2012 - 03:54 AM
Aww well good Jack I'm so glad you are helping raise too.. Piin, no I'm still waiting to see if my sister is a match it seems like it's taking FOREVER but it's only been a week lol. ugh.. I keep telling myself to break and take one day at a time lol.. billie no worries hun I wasn't offended or anything else I just didn't know what it was haha... Well I made myself a caring bridge account if ya'll wanna keep in touch and follow my progress through out the transplant it'll all be posted there by me or a family member... it's www.caringbridge/visit/morganjacobs Hope ya'll sleep well or are sleeping well.. I have to much on my mind I just can't seem to fall asleep... night ya'll!
Advanced Member
Posted 29 February 2012 - 06:18 PM
Hi Sunshine, I've been following your story too and through I had better pop in to say hello and good luck. The hurry up and wait thing sucks, and I've never had to wait for anything as big as what you are waiting for.
I tried to checkout your caring bridge account and eventually worked out that there is a ".org" missing from the address i.e. http://www.caringbri...it/morganjacobs
Thanks for making the site and posting. It's great for us to see what the transplant process is and hopefully we can provide some helpful support along the way. It sounds as if you have an awesome support team happening. Don't feel like a burden, I mean as you said if the boot was on the other foot you'd be the caregiver for them in a heart beat. What's good for you and gets you better is good for them.
Take care, Josie
PS do you have any puppy pics
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
New Member
Posted 29 February 2012 - 09:27 PM
oh thanks Josie I never even noticed I forgot to put the .org in there lol. Whoops haha. Well thank you for following me, I was actually wriging in the journal when I saw this so i added a picture of my puppy... So my parents nor sister were a match but they said i had many matches in the national registry so she requested info from 6 of them... Guess we'll see what happens lol
New Member
Posted 29 February 2012 - 09:27 PM
oh thanks Josie I never even noticed I forgot to put the .org in there lol. Whoops haha. Well thank you for following me, I was actually wriging in the journal when I saw this so i added a picture of my puppy... So my parents nor sister were a match but they said i had many matches in the national registry so she requested info from 6 of them... Guess we'll see what happens lol
New Member
Posted 01 March 2012 - 12:43 AM
Sunshine,
I have been following your progress here and on Caringbridge. Glad to hear you have multiple matches on the registry. You have so much coming at you so fast it is certainly natural to be overwhelmed - who wouldn't be? Your family is amazingly supportive and I imagine a great source of strength. I know there is not much to say to comfort you, but I hope that knowing you are cared about and in our thoughts offers some helpful support. We are all members of a club we wish we could disband - but till that time, it is a tight knit club.
Wishing you a good night's sleep,
Fran
Advanced Member
Posted 01 March 2012 - 04:50 AM
Hi Sunshine,
Lilly is so cute! What kind of dog is she? I'm glad that you have other matches even if it can't be your sister. 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
Member
Posted 01 March 2012 - 04:38 PM
Sunshine,
I clicked on your caringbridge site but it didn't work for me, site not available. Did you get it set up. I only read thru the first page of your post and comments. But I can see why you are excited about a chance for a CURE!
I was diagnosed with CML in 2005 at the age of 57 years, and had two matches my oldest sister who is now 75 and in bad health. A younger brother who is now 64 and has quad heart by-pass and 3 defib.
I was really upset, I didn't have the opportunity to have the transplant, as it stuck in my mind CURE!!! However I certainly am much to old now at 64 years.
In fact I may have been to old at 57 year when diagnosed. I don't know. Yea they keeping saying cure. Well who knows when but the closest thing to cure right now is still the transplant.
However you are much younger then I was at diagnoses. If you find a good match and you have good support and good doctor at MD Anderson, well I know what I would do, but it is your choice. I think the doctors would consider your health, age, well being, home support & all those things. I hear good things about MDAnderson, in fact I flew there in 2005 and 2006 and was overwhelmed with everything. Such a difference between the leading BMT centers and local hospitals.
I have heard some good success stories of transplant, and some heart wrenching sad stories. But every case is different, with so many variables.
I will read on down your comments. Prayers and warm thoughts coming your way.
Ok I found you on caringbridge and posted. God Bless!
PamSouth
PamSouth
New Member
Posted 01 March 2012 - 07:01 PM
Hey PamSouth, glad you could find my caringbride page, sorry was so hard to get to lol. I knwo when I posted it on here I forgot the org.. so it's www.caringbridge.org/visit/morganjacobs lol... Also thanks for signing my guestbook always love comments to read :-) just to clearify though i'm not getting a transplant at MD anderson lol.. I'm getting a transplant at University of Michigan, I'm sure my family will prob see that be confused hahaha!!! It's all good though I just wanted to clarify incase I came off confusing about where I was getting it done at : ). thank you for the wishes and prayers, i know it's a long process and battle but it'll be worth it in the end.... I hope LOL
Guest_billronm_*
Posted 03 March 2012 - 08:37 PM
Hi Sunshine,
I just wanted to see how you are doing. After all this time no response and all of a sudden things are all happening so fast for you. I just wanted to let you know that you're always in my thoughts and prayers, patience is one thing I don't have, I'm a do it and get it over with person, so I bet you are beside yourself now with all the preparation going on. No wonder you can't sleep. But believe it or not the time is going so fast look how long it has been since your first post and look at the date now. And how far you've come. So hang in there little lady we're all in this together and let's get this show on the road. I'm finally back home,but after being gone 2 months I forgot where a lot of things are,and how to use my microwave,or set my digital stuff. I've been using my sister-in laws kitchen for so long I couldn't find half of my utensils to just make a pot of chili today. Tomorrow it's laundry, The night before I left for Fla. I did all the laundry,left an empty hamper,the night before I left Fla. I did all the laundry. We didn't have many clothes in our overnight bags for the trip home, so how come I have about 6 loads of laundry to do? I think somebody broke into our home while we were gone and left their dirty laundry! Take care I'll keep in touch. lol Billie
New Member
Posted 07 March 2012 - 09:08 PM
Billie you always have such fun stories to share and make me smile! I swear you were a born comedian in heart! I always love your replies to me well actually to everyone lol! This are going quickly but when you're in it it doesn't seem like it's going fast lol... I feel like it's taking forever but like just too much infor being thrown my way at once. Went to fertility doctor today, good news was I had lots of eggs so i'm in good shape to freeze them. We are starting the process as soon as shots come in, yay... bad news, which I actually saw Laila post something about it too so I'm going to say something to her, I found out i'll be going into chemical induced menapaus. That was a tough pill to swallow. Just turned 26 and now menapaus, aint that a beotch...
Advanced Member
Posted 07 March 2012 - 10:30 PM
Hi Sunshine,
I was just reading your 4am caringbridge post. My mind rattles around late at night too...drives my husband nuts, poor thing is trying to wind down and get ready for sleeping and my mind (and possibly my mouth ) is racing around with all the what ifs of life. You posted about feeling "punished" and faith. Luckily for me I've never had much of the punished feeling, probably because things are going ok for me or maybe I am truly a "shit happens" person, who knows...I haven't really been tested yet. Any I wanted to tell you about a book I'm half way through reading. It is called, When bad things happen to good people, by Harold Kushner. The first chapters focuses on people feeling let down and really questioning their faith in the face of really bad crap happening to them. It also looks at how those around them react. Presumably the 2nd half of the book works through these things. I don't expect it resolves them in a magic bullet kind of way but I'm looking forward to reading it. It might be a good read for you...I'm picking you are spending the odd hour in waiting rooms these days
It sucks that the treatment is going to mess big time with your fertility. It is good to hear that you have lots of eggs to freeze and that this is an option although I wish it wasn't necessary for you. We are getting ready to take a big risk to try for a pregnancy, which has my mind doing midnight laps. Nobody will/can actually tell us what our chances are but when it comes to having children (& I guess also having cancer) we can only do our best and then find peace with the outcome. Simple right? If only it was easy...
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
New Member
Posted 12 March 2012 - 04:55 PM
Thank you for writing me Jig! Good luck with trying for the baby I know you all will be blessed and eveything will be okay! I'm hoping everything goes well with the freezing of my eggs right now i'm just taking the pill waiting for my shots to come in, outch lol. Yes my mind wonders at 3 - 4 am and it stinks... I guess it's because it's night and everyone else is asleep so whatelse to do but sit and wonder.. Still waiting for my donor match to be confirmed, ready for it to get on it's way already lol!
Guest_billronm_*
Posted 13 March 2012 - 10:52 PM
Hi Sunshine,
I'm so happy for you that they were able to freeze your eggs. That's one thing cml can't take away from you. It seems like it's one thing after another for you. Boy you must have pissed someone off royally. I'm always saying that about myself,I just hope I had fun doing it.
I had a hysterectomy when I was I think 40 (damn brain fog I can't remember the exact age) anyway it threw me into premature menopause, I was always soaking wet from hot flashes, at night I would run outside naked because I was so hot. I grew a mustache, had terrible mood swings. Wrote my kids out of my will. Oh I was such a bitch! You know what it's like, because you've been on tkis. Well I don't know about the mustache but it's basically the same type of symptoms as a tki. Actually less, you don't lose any hair unless you pull it out,and no dry eyes, or rashes. Now that I think about it being on a tki is a lot like going through menopause.
You know I'm just kidding,except for the tki symptoms, now that I think about it the symptoms are similar. There's no guarantee you'll go into pre-men,so try not to think about that right now. Don't listen to old wives tales. What you're going through right now, and what you might have to go through, believe me pre-men is a piece of cake,compaired to cml Crap. Hang in there, Sincerely Billie
New Member
Posted 13 March 2012 - 11:50 PM
:'( such a bad night to of posted this... I found out today i wont be able to harvest my eggs because I'm not stable enough to come off the chemo and the lady who sent me there didn't "look" at that before setting everything up... so I got some phone calls today that broke my heart... I'll write later or my caringbridge site is under morganjacobs, thanks for the inspiration though hun just stinks was very very hard day
New Member
Posted 13 March 2012 - 11:55 PM
by the way.... does it really make you grow a mustache??
New Member
Posted 13 March 2012 - 11:55 PM
by the way.... does it really make you grow a mustache??
Guest_billronm_*
Posted 14 March 2012 - 01:09 AM
Oh Honey I am so truly sorry,
I always try to say something stupid to cheer somebody up, But I can't think of anything stupid right now, my heart breaks for you right now.
I just spent almost an hour writing a post to you,but I deleted it I already told you how I feel for you and it comes from my heart. Boy the way science is now it changes from day to day. Hold that thought!
No you won't grow a mustache,I hope! I just had another birthday and the eyes are the first to go. I did go to my opthamologist last Thursday and I'm getting new lenses so I'll let you know if I see a mustache. It seems like this cml does a no. on our eyes, so keep up with your eye exams. I was on Gleevac less than a year and I developed cataracts. Ol doc says we'll watch them but it takes years for them to mature,7 months later I had to have cataract surgury on both eyes.
Dammit I'm trying to cheer you up. I'm not doing very well am I? I got home from Fla last Thur. And getting organized after being gone for 2 months is rough. Do you know where my wire whisk is? After being in Rons sisters apt. for 2 months I can't remember where my own stuff is. And forget about re-setting the clocks I have to find all the books. Oh Lord we still don't have a 2012 calander,and Ron is retired, so I have no idea what,when,or where,I'm supposed to be. And you know all the appts. we have I've already missed 2 because of brain fog.
Take care hon I'm still trying to get used to this laptop! Boy I'm really a computer idiot. Love Billie
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