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  #1  
Old Wed Jun 8, 2011, 03:05 PM
Laura Laura is offline
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Big drop in platelets...

I am all set to go to Boston to Dana Farber. They were the most willing to help and figure things out. I fly out the 14th for an apt on the 15th.

And then....I have noticed bruising the past few weeks. Initial thought is are my platelets okay?...Trying to not panic I said don't worry about it...But they continue...so I asked to get my platelets drawn today....65....I don't even know what to say. I called my BMT dr (as I had asked my primary to order the labs). The nurse said he would talk to my doctor and call me back....I hate waiting....

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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  #2  
Old Wed Jun 8, 2011, 04:03 PM
evansmom evansmom is offline
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Laura,

This is worrisome but hopefully not the beginning of a trend. What, if any, meds have you stopped recently in terms of immunosuppressants especially?

Do you have any S&S of a viral infection?

Like you need something else to worry about.

Keep us posted, I'm keeping my fingers crossed.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

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  #3  
Old Wed Jun 8, 2011, 05:45 PM
Laura Laura is offline
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I am to the point of tears....just got off phone with BMT dr...."I just need to call my primary and she can take of it"...really?, honestly?....

"The rest of your counts look fine." "She can take care of it. Now if you were truly relapsing then she could call us and we would take a look."

Really?....

I honestly am fighting back tears...

How can they say it's not the start of a relapse...no tests?...no repeat counts?...no nothing?....

And they WONDER why I am so MAD at them?

My apt with Dana Farber is on Wednesday...Is it okay to wait?

They claim this is a MEDICAL problem and NOT A TRANSPLANT problem...so there is NO REASON for them to be involved.
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  #4  
Old Wed Jun 8, 2011, 05:46 PM
Laura Laura is offline
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The only change is stopping Budesonide...

No signs of anything...feel fine....minus usual GI and fatigue...

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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  #5  
Old Wed Jun 8, 2011, 06:15 PM
Laura Laura is offline
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Remember me talking about low B12?

I had asked my primary to also check the B12 level because it was severely low before and all I got was 3 shots...

Well it is still severely low...

So now my BMT team is saying my platelets are low because my B12 is low and so therefore it is a medical issue and has NOTHING to do with transplant so there is no reason for them to get involved.

Is it true that low B12 can cause low platelets?

Because I know it can cause anemia and my HGB is 14. So it doesn't make sense to me that my HGB is 14 but my platelets are low....

My MCV is 102.3

Everything else is normal minus my Lymphocytes at 4910...

I can't help but think...high lymphs...low plts...is AA back?...PLTs are the first to drop...high lymphs could be because they are attacking....I tried to explain this to them....and they claimed that it had nothing to do with transplant...it was all related to low B12....

So anyhow...looking up signs for low B12....early, noticebal signs...unusual fatigue (check), faulty digestion (check), no appetite (check), nausea (check)...this is based on internet so not sure if it's true...would this really explain things?....

I don't know what to think or do!!!! And of course they leave it up to me to figure out on my own. I really hate Mayo right now!
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  #6  
Old Wed Jun 8, 2011, 06:20 PM
Marlene Marlene is offline
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I too would find it very troubling that they are not willing to take a look at it or at least give you some insights as to maybe why your platelets have dropped.

Is Budesonide a steroid? Stopping it may have temporarily disrupted your system enough to effect your platelets. Steroids are very confusing for the body.

Regarding your question on Dana Farber....Why not give them a call and see if they can offer any peace of mind. What did your GP say?

I wish I could offer more support. Just know that you are doing the right thing and you will prevail.
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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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  #7  
Old Wed Jun 8, 2011, 06:25 PM
Laura Laura is offline
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Hi Marlene,
It's a steroid that I have been on since transplant. I have weaned and gone back on many times. I weaned off completely about a month or so ago...I honestly don't remember.
I already have an apt with primary tomorrow...so we will see...
I called and warned them I was going to come with low platelets...the nurse said they can't recommend since technically I am not a patient there yet...
Laura
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  #8  
Old Wed Jun 8, 2011, 06:29 PM
Marlene Marlene is offline
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Absolutely yes to the B12. You can have a perfect CBC with low B12. It can present in other ways and many doctors dismiss a B12 deficiency when someone's CBC is normal. The only way you'll know is to get the B12 up. This can take a while but it's very doable.

http://www.vitamins-supplements.org/...ocobalamin.php
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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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  #9  
Old Wed Jun 8, 2011, 08:32 PM
Laura Laura is offline
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Marlene,
Can the low B12 cause low platelets only?
Can anything from transplant cause low B12 or is it just something else?

I just think it's weird that my plts would be low and not my hgb...

I am just frustrated because I feel like they have left it to me to figure out by myself....

Laura
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  #10  
Old Wed Jun 8, 2011, 08:42 PM
Laura Laura is offline
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Marlene,
Thanks for the website....it is really good.
When they first noticed my low B12 they checked my intrinsic factor, which was normal...so what would cause low B12.
Laura
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  #11  
Old Wed Jun 8, 2011, 10:20 PM
evansmom evansmom is offline
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Any chance the lack of budesonide could have triggered an anti-platelet antibody reaction like ITP?

Laura, I am so sorry you are having such a frustrating time getting things figured out and I think it's awful you're having to orchestrate this all by yourself. I'm not impressed with your team at Mayo and am holding onto high hopes at Dana Farber.

Absolute best of luck there.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #12  
Old Wed Jun 8, 2011, 10:29 PM
Lisa V Lisa V is offline
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Laura, I've got no answers for you, I just wanted to say I'm really sorry to hear this. I remember when you were transplanted, how well things seemed to be going at first. I thought you were going to be one of the lucky ones, but since then, with all of the gut issues and headaches, etc........ *sigh*

I certainly share your frustration with the transplant doc for handing it off to your primary. I hope you can get some answers, and soon! Keep pushing!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #13  
Old Wed Jun 8, 2011, 10:47 PM
Hopeful Hopeful is offline
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Hi Laura,

You could have Crohn's disease or malabsorption issues that are causing the B12 deficiency. If the drop in platelets just happened, perhaps the RBC's will follow. (There always seems to be a lag for me.)

I hope you can get this resolved and that it doesn't need to involve the transplant team!
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  #14  
Old Wed Jun 8, 2011, 11:55 PM
mausmish mausmish is offline
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Arrrggggg

Laura,

I am so sorry to hear about these latest troubles and incredibly angry at how your transplant team is reacting. You must be going through the whole gamut of emotions right now. I really hope Dana Farber will prove helpful. you've been through so much already. Hang in there and continue to be stubborn until you get results. You know already that you're tough and we're all here rooting for you.

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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  #15  
Old Wed Jun 8, 2011, 11:57 PM
Laura Laura is offline
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Quote:
Originally Posted by evansmom View Post
Any chance the lack of budesonide could have triggered an anti-platelet antibody reaction like ITP?

Laura, I am so sorry you are having such a frustrating time getting things figured out and I think it's awful you're having to orchestrate this all by yourself. I'm not impressed with your team at Mayo and am holding onto high hopes at Dana Farber.

Absolute best of luck there.
It's possible. I was on Budesonide for two years straight. How would they test for this? I know my primary would test for it if I knew what test to ask for!

Thanks again! I will keep you all updated. Laura
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  #16  
Old Wed Jun 8, 2011, 11:58 PM
Laura Laura is offline
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Quote:
Originally Posted by Lisa V View Post
Laura, I've got no answers for you, I just wanted to say I'm really sorry to hear this. I remember when you were transplanted, how well things seemed to be going at first. I thought you were going to be one of the lucky ones, but since then, with all of the gut issues and headaches, etc........ *sigh*

I certainly share your frustration with the transplant doc for handing it off to your primary. I hope you can get some answers, and soon! Keep pushing!
Thanks for the nice reply. I know, my transplant team seems to think there is nothing wrong is handing it off because "it has nothing to do with transplant at all"(the low platelets)...what?

Laura
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  #17  
Old Thu Jun 9, 2011, 12:02 AM
Laura Laura is offline
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Quote:
Originally Posted by Hopeful View Post
Hi Laura,

You could have Crohn's disease or malabsorption issues that are causing the B12 deficiency. If the drop in platelets just happened, perhaps the RBC's will follow. (There always seems to be a lag for me.)

I hope you can get this resolved and that it doesn't need to involve the transplant team!
Hi Hopeful,
Thanks for the advice. I have been tested many times for Crohn's and it has been negative. Laura
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  #18  
Old Thu Jun 9, 2011, 12:03 AM
Laura Laura is offline
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Quote:
Originally Posted by mausmish View Post
Laura,

I am so sorry to hear about these latest troubles and incredibly angry at how your transplant team is reacting. You must be going through the whole gamut of emotions right now. I really hope Dana Farber will prove helpful. you've been through so much already. Hang in there and continue to be stubborn until you get results. You know already that you're tough and we're all here rooting for you.

Hugs,
Karen
Thanks Karen. How are YOU doing? How is the nausea?
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  #19  
Old Thu Jun 9, 2011, 06:13 AM
squirrellypoo squirrellypoo is offline
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I cannot believe the transplant team's reaction! Honestly, that is so unprofessional and bordering on negligent - how can they possibly say it's not their problem, it's a BLOOD issue? It boggles the mind...

This is such a polar opposite of what my transplant team and post-BMT nurse are like - if anything is even slightly off, they do a barrage of tests and have me come in "just in case". It's always "just in case"! And that's the way it should be.

I really hope that your GP and Dana Farber can sort this out for you, it sounds like there's nothing much more to be done at Mayo than to just say good riddance and move elsewhere. Is there any possibility of bringing your flight and appointment forward at all?

melissa
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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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  #20  
Old Thu Jun 9, 2011, 07:24 AM
edithr edithr is offline
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Laura, I am of no help other than to give you hugs. I cannot imagine the frustration you must feel right now, and from your sig you've been dealing with this for a long time now. We all hate the not knowing part, and adding that the "it's not my problem" response from your doctors is truly awful.

My prayers are with you, I hope you get some answers soon.
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  #21  
Old Thu Jun 9, 2011, 08:15 AM
Marlene Marlene is offline
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There are other reasons that can cause low B12. Many who do, don't have a specific clinical reason identified. Anyone over 50 will most likely have lower levels due to lower levels of stomach acid which means they are not able to fully digest food to get the nutrients out of it. An imbalance of the gut flora will cause malabsorption as well as create food intolerances usually to wheat, gluten, dairy and eggs. The overgrowth of bad bacteria consumes what ever B12 you take in, leaving less for you to absorb. The use of antacid and the other GERD medicines impair proper food breakdown. If your pancreas is not up to par, then the digestive enzymes may be insufficient to fully digest what you've eaten. The stress of the transplant and long time illness can deplete what you have. As well as medications. Many are know for depleting nutrients. There are many possibilities. The problem is that they are usually sub-clinial and get dismissed. But over time, it all adds up.

Your gut issues would play a big factor in your body's ability to breakdown and absorb what you need.

B12 is need for every cell in the body and is needed for proper DNA/RNA replication. Everyone is different and a deficiency will effect people in different ways. Along with low B12, there are probably other nutrients impacted. It's not easy to figure it all out and to correct it quickly. But getting additional B12 is easy to address while you try work through all your issues.

I know you feel let down by Mayo so express your anger over it and find a way to put it behind you. It will just eat at you if you don't. Their reaction to your issues is not personal, it just exposes their limitations. They feel they did their part....the transplant. We all know it takes more than that for people to improve and heal. After these severe treatments for MDS/SAA, we all want to return to a better quality of life but some are left with new issues from treatment. Restoring counts and feeling like crap is not acceptable. Just remember, no one cares more for your health than you. Even though we had a great team at Hopkins and locally, there were things we had to take into our hands to fix/improve after treatment.

Let us know how your appointment goes today and keep the faith. You will figure it out.
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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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  #22  
Old Sun Jun 12, 2011, 01:31 AM
Laura Laura is offline
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not even 48 hours after my 65 plt draw my plts were at 44...yes...44...drop of 20 in a few days...and now many more bruises so I wonder what they are. My primary ordered them for Monday again. After calling multiple times pressing them to do something...they will make sure my low platelets is not due to "viral illness or a secondary issue". Well my primary told me he ordered Hep/HIV screens...excuse me?....my only risk factors are blood transfusions...anyhow, he is also testing for the platelet antibity too...but still no BMB because he highly doubts it has anything to do with it....so what...I think one should be called for at this point...oh and bc my plts are so low he does not want b12 injections at all. So only put on 1,000 oral daily but "it won't be absorbed anyway"....I would rather do a few SQ injections at first...especially before my plts drop any further...I understand now IM...I just don't see how oral is going to help matters when it is at the level it is...
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  #23  
Old Sun Jun 12, 2011, 08:02 AM
cheri cheri is offline
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Hold on and hang in.....

Hi Laura,
First, take a deep breath...no, really!
I have been following your recent posts about platelets, and can FEEL your frustration and fear about the situation.
Plummeting platelets....I know what a sinking feeling that is, having been there....also, the absolute sense of betrayal by the people you entrusted your very life, to act as if now you are a bother, since they had worked their miracles with you and now have moved on...my hospital doctors("home" for 2 -1/2 months would not even return my phone calls!) For some of us, the ride is a little harder... I live the life of being platelet transfusion dependent and will agree, that it is scary to think about, especially when you see new bruising and such.

Hopefully, your NEW doctors in Boston will have some options for you--you are on your way very soon, and you will be ok until then--the timing is perfect! You will get there just in time to have experts to see what is really going on! Keep getting tested, and if you need a quick platelet transfusion, you will get the bump you need to make your trip. And think about doing something fun while you are in Boston! Yes, waiting is really hard...In the meantime, your friends here at MF are here for you! Take care....
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  #24  
Old Sun Jun 12, 2011, 09:43 AM
Marlene Marlene is offline
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On the oral B12. They have found that high doses of oral B12 to be as effective as injections even with absorption issues. You can even do 5000 mcg daily. It is best to do it on an empty stomach, without any other nutrients, for the best results. Do you know what form of B12 you have? The Methly form is bio-available and would be best.

Jarrow makes a very good sublingual Methyl B12. 1000 and 5000 mcg. You can get them at Whole Foods or online at iherb.com.
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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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  #25  
Old Sun Jun 12, 2011, 10:11 AM
freedom99 freedom99 is offline
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Take a deep breath

Hi Laura;
I agree with Cheri, take a deep breath and hold off on what could be or couldn't be. Your appointment is soon and you've had one CBC to look at your platelets which are 65. With my wife there usually is no transfusion of platetelets till 30 so if you are worried maybe get another CBC to see where the platelets are going. Look for signs of bleeding and if you feel you need an emergency transfusion of platelets you can go to emergency and they can do a further assesment.
Without knowing much about your situation I think you are on the right track.
Also, don't feel bad about pushing a few button here and there with the medical support system. Doctors, whether they are the best in the world or a regular GP expect you to take control and initiate actions, ask questions, look for answers, etc.
All the best at your appointment on the 15th.
Stand Strong Laura.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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