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  #126  
Old Wed Sep 8, 2010, 01:50 AM
tserdogan tserdogan is offline
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Hi Laura,
You may recover soon..
i have also nausea and i don't eat more.Do you have some offer to eat more.?My enzymes are high so i don't want to take pills for Nausea.
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  #127  
Old Fri Oct 8, 2010, 08:18 PM
Laura Laura is offline
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Things are going good here. My counts remain awesome.

However...

I am really struggling with fatigue and returning to work. I work on a VERY busy pediatric hospital. We run the entire shift. I am so exhausted after working one day I am sick for multiple days after. I am really struggling with this and looking at options to only work half time. I just can't handle the work I used to do and it is very upsetting to me.

Also, they may have found the reason for the diarrhea...so far everything has come back negative. However, a few recent tests are leading doctors to think I might have Zollinger-Ellison Syndrome....a tumor or tumors in the pancreas and/or intestine. I am pretty nervous about this whole situation. They are still doing some of the testing to confirm this. While it will be nice to FINALLY have an answer to the diarrhea...it is depressing to hear what could be the cause. It is very rare and normally found in men between 30-50 yrs. That is why no one thought to test me for it before. The tumors cause my body to make high levels of gastrin which causes the diarrhea and also makes high acid levels in the stomach.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #128  
Old Fri Oct 8, 2010, 08:48 PM
mausmish mausmish is offline
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Hi Laura,

Sorry to hear you're going through a tough time. Hopefully, you'll be able to switch to a part time work schedule and find a comfortable balance. I know it's very upsetting to not be able to do everything you could before, especially for someone who is as obviously dedicated to your work as you are. From what I've heard and read, it might take years to regain your strength and stamina after the transplant. Don't give up on yourself.

If Zollinger-Ellison is confirmed, what can be done to treat it? It seems so unfair sometimes that it's one thing after another heaped upon us, no matter how strong and positive we try to stay. I guess everybody gets discouraged sometimes. I'm sending lots of positive, healing thoughts (and the purrs of six felines) your way.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #129  
Old Fri Oct 8, 2010, 08:58 PM
Laura Laura is offline
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Karen,
Thanks for the nice message.


I am not too sure the exact details of things yet. It is still possible it could not be that. They still are doing certain tests to make the final confirmation.

However, what I saw on the internet was surgery to remove tumors/chemo/radiation/etc. It totally depends on many factors.

So I guess I have to wait and see which is hard for me.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #130  
Old Tue Oct 12, 2010, 12:35 AM
Debbie W Debbie W is offline
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Laura

Sending positive thoughts your way

Warm regards,
Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #131  
Old Mon Oct 18, 2010, 08:33 PM
Laura Laura is offline
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Still waiting for results to come back...

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #132  
Old Tue Oct 19, 2010, 12:09 PM
Laura Laura is offline
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Results came back high...so basically it means I 99 percent sure have that Zollinger-Ellison Syndrome. The doctor is gone until Thursday so now I have to wait until then to hear the next step. This is just so crazy. I can't believe after everything now I probably have a cancerous tumor in my intestines or pancreas. I wonder if the radiation/chemo could have caused this???

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #133  
Old Tue Oct 19, 2010, 01:01 PM
launch launch is offline
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Options...

Dear Laura,

So sorry to here your latest news. Of course, when the doctor comes back, perhaps it will be better than expected. Let me also share that my secretary had a 16.5cm tumor of her pancreas, it had began 2 yrs prior when she had some gut problems. Long story short, she had another doc that took specific interest in her condition and she started with an ultrasound, which located the tumor. She was then referred to Emory University (Atlanta, GA) for surgery. They removed 85% of her pancrease and within the tumor it was cancerous, but, they were able to remove enough of it that they also had a clean slide during surgery, so, no additional chemo was required. Along with the pancrease, they removed spleen, gallbladder and part of stomach due to the large tumor having wrapped around her organs.

Now, I'm NOT tell you all of this to scare you, I'm relaying a success story that seems far worse than what you're looking at, and yes, there is still hope! You've been through so much Laura and I'm so sorry you're still having to go through more... just know that there is still treatment once an accurate diagnosis is made. (Your Doctors are on top of your situation!) and, I would doubt your tumor, if you have one would even come close to what she had.

Oh, and our secretary is back working, 6 mons after surgery. She's doing absolutely great! She just sent me an "IM" because I asked her how big her tumor was? She wants to know why I'm asking, lol. Now, let me update her that her story can be an inspiration to others!

Chin Up! Will keep you in my prayers!
Cindy
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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  #134  
Old Tue Oct 19, 2010, 10:53 PM
Debbie W Debbie W is offline
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Laura

I can hope that if confirmed this is the most mild, treatable form and that it is controlled quickly.

We'll be thinking of you and sending nothing but good thoughts your way.

Hugs,
Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #135  
Old Wed Oct 20, 2010, 12:04 AM
mausmish mausmish is offline
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I echo Debbie's sentiments exactly. Lots of positive, healing thoughts coming your way.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #136  
Old Wed Oct 20, 2010, 07:48 AM
Marlene Marlene is offline
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Yikes Laura!!!! You've been through so much already. I certainly hope it's in its early stages and you get answers sooner than later.

Sending positive thoughts your way.....M
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #137  
Old Wed Oct 20, 2010, 08:29 AM
squirrellypoo squirrellypoo is offline
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Oh crap! That sucks, Laura.

But, on the upside - you have a diagnosis, so at least they can start treatment instead of constant prodding and poking and trying nasty meds. And soon you might be able to sit down and eat a normal meal without feeling so awful afterwards! And eating well means more energy and finally feeling fit for those work shifts, too. I think this might be a turning point for you!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #138  
Old Thu Oct 21, 2010, 10:48 PM
Laura Laura is offline
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Met with the dr today. Going to have some scans next week along with a endoscopy that has an ultrasound/camera on it so they can get a better look at the pancreas and intestines to try and find the tumor. With these tests they are trying to locate where the tumor is. The doctor said it probably is in the pancreas....

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #139  
Old Fri Oct 22, 2010, 03:02 AM
Julianna Julianna is offline
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Sorry to hear your news, (((Laura))). Hope they can help solve it quick for you. xx Julie
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #140  
Old Fri Oct 22, 2010, 09:08 AM
tserdogan tserdogan is offline
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Laura,i am so sorry for this bad situation.You are fighter and you can defeat this tumor.Moral is important again.Remember your transplantation time it was not easy.Now another thing but i believe you win this disease easily.
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  #141  
Old Mon Oct 25, 2010, 10:49 PM
mausmish mausmish is offline
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Laura,

I hope your tests go well this week and that they can find that pesky tumor and get rid of it.

Hugs,
Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #142  
Old Wed Oct 27, 2010, 08:25 PM
Debbie W Debbie W is offline
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Laura

Thinking of you this week and hoping for the best results.

Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #143  
Old Tue Nov 2, 2010, 05:38 AM
tserdogan tserdogan is offline
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Hi Laura,

İs there any new news?
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  #144  
Old Tue Nov 9, 2010, 07:49 AM
squirrellypoo squirrellypoo is offline
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Thanks for the update, Laura! I don't mind that it's copy/paste at all! Don't waste extra energy on us, okay?

Ugh, those tests sound pretty gruelling. I know what you mean about the claustrophobia - sometimes you just have to force yourself to calm down and just go somewhere else mentally to not think about your current situation. And then to find out it will need to be done again, oh!! My heart goes out to you, hon. I hope the changes at work mean you get to enjoy your life a bit more than you have done.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #145  
Old Thu Jan 6, 2011, 06:38 AM
squirrellypoo squirrellypoo is offline
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Oh Laura, I'm so sorry to hear you're still suffering with this. It sounds like it might be time to get a second opinion, as you must have exhausted everything Mayo have to say on the matter by now.

I wish I knew the area to suggest something to you. Have you got anyone on your transplant team that can suggest elsewhere (I say so because my post-transplant nurse just arranged a referral for me to a different hospital's gynae dept so maybe they can do the same for you to a different hospital's gastro-internal dept?)?

But on the upside, we're at the year and a half mark now! Must mark these milestones to remember how far we've both come...
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #146  
Old Thu Jan 6, 2011, 04:34 PM
mausmish mausmish is offline
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Laura, so sorry you're still having the gut problems. I agree it may be time for another opinion. UGH. I'm at day +37 and suffering almost constant nausea for the past 30 days but at least no diarrhea. My numbers are great and my cells 100% donor, a cause for celebration.

Please keep us posted how you 're doing...hope much better soon.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #147  
Old Mon Jan 10, 2011, 05:23 AM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by Laura View Post
Melissa how are things going with your apts? Getting anywhere?
Well, after I got the PALS (patient liaison service - the people you complain to) team involved, they apologised profusely and convinced me to give them one last shot. So I have an appt with a doctor (rather than a consultant, as my jerk consultant's replacement doesn't start til Feb) on Friday. If I'm not happy, I'm ending it with that department totally, and getting copies of my various blood and hormone levels to take with me.

Meanwhile, one of my lovely haem registrars put through a referral to the early menopause unit at Guy's hospital (which is in walking distance from mine), and lo! I got an appointment letter through last week. So even if this last chance King's dr doesn't care or spouts the same BS as the other doctor there, it doesn't matter, because I'm seeing the early menopause Prof at guy's at the end of Feb. (Which is how it should be - referral to appointment in 2 months is perfectly acceptable. Six months is not!!)

So hopefully things are looking up for both of us!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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