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  #1  
Old Mon Sep 17, 2012, 06:26 AM
cdseibold cdseibold is offline
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I am recently diagnosed with MDS. Still in shock.
This week I will travel to Mayo clinic in Rochester, MN to get a second opinion and hopefully some advise.

I am 69 years old but have been very active. Raising a 13 year old adopted grandchild; hockey mom; football and baseball mom. I retired 12 years ago but have been holding two part-time jobs. I love animals and have a hobby farm with lots of critters.

I am scared about this disease because I need at least 5 years to raise this last child. My husband cannot raise him alone and there is really no one of our family or friends who could do this.

I hope to learn everything about MDS that I can. I have lots of questions but will save them for another forum.
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  #2  
Old Mon Sep 17, 2012, 09:20 AM
ssdavi71416 ssdavi71416 is offline
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cdseibold

You are in my thoughts and prayers. I have Aplastic anemia at this point, but it is very similar in initial symptoms.

If you have not already request the information package from AAMDS.org

http://www.aamds.org/patients/educational-materials


You are very fortunate to be close to the Mayo clinic. You will be in good hands. Initial treatment will probably take a significant amount of time. The Neutrophil count (part of White blood count) and platelet count will determine how safe it is to be working on the farm. You may be very tired based on red blood counts. Do not be afraid to ask friends and neighbors for help. You will be surprised how many people are willing to help and want to help. There are others that are much more knowledgeable than I, so you will probably have a lot of information. My main advice is to have a list of questions for your doctor and ask them.

Scott Davidson
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  #3  
Old Mon Sep 17, 2012, 02:16 PM
riccd2001 riccd2001 is offline
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Take a deep breath...

Take a deep breath and be assured that this site will help you a lot with speciifc questions about MDS. It took me almost six months to get up to speed to understand what's going on with my MDS diagnosis. Over four years later and I'm still learning.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #4  
Old Mon Sep 17, 2012, 04:23 PM
cdseibold cdseibold is offline
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My story

I an a PhD chemist. Probably exposed to some nasty stuff in the 60-70's. Nothing in the last 2 decades. However, I did have radiation therapy for breast cancer 12 years ago.

I think I need a PhD in hematology. Tried to read a friend's hem textbook. Puts me to sleep. Great for when I am awake at 2 am worrying about this disease.

I will go work on my blood values and see if I can learn a little more.

Thanks for the support. I feel like the Lone Ranger in the north woods with limited medical resources. Hey, but the leaves are gorgeous now. I think we are at peak leaf color.

Thanks for the good advise. Nice to know you guys are out there.

Mayo here I come. Packed suitcases today.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #5  
Old Mon Sep 17, 2012, 04:43 PM
Al's Wife Al's Wife is offline
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Sorry you have had to learn about MDS the HARD way. Just know that it is a roller coaster ride and sometimes you just have to hang on. It is also a disease of one, as someone so aptly put it last week, I think, as each patient is different within the disease classification. Some people's MDS stays stable for years and some people's, unfortunately my husband is one of these, is quite aggressive. Hopefully you will be the one that stays stable for a long time.
You have found a great forum here with lots of knowledgeable and caring people. Good luck at Mayo and God bless you.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #6  
Old Mon Sep 17, 2012, 06:14 PM
ssdavi71416 ssdavi71416 is offline
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cdseibold

cdseibold

I am a MS level chemist. I have asked many times what caused my AA. When I ask the Drs they all really don't care and are just interested in treatment. I guess it is good that they are most intereted in treatment.

Scott Davidson
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  #7  
Old Mon Sep 17, 2012, 06:32 PM
triumphe64 triumphe64 is offline
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The next time there is a AAMDS patient family conference near you, I suggest you attend. All the doctors who speak there are experts.

The next one is in Chicago October 20.

http://www.aamds.org/support-and-community/conferences
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #8  
Old Tue Sep 18, 2012, 11:39 AM
Mary4Mike Mary4Mike is offline
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Carol,
I posted on your other post. Just saw this and wanted to comment about what caused your MDS. I would guess the radiation for breast cancer, but one can never be sure. I agree with Scott that the doctors we have come across through this journey really don't seem that interested in the why. They don't really ask questions about past exposures, etc.
I hope you come away from Mayo with a few more answers to your questions. I hope they give you an access to contacting them. I guarantee that you will walk out and think of something you forgot to ask. New questions will be forthcoming all along the way. Just remember this forum and hopefully it will be a help to you.
Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #9  
Old Wed Sep 19, 2012, 12:30 AM
MDSPerth MDSPerth is offline
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Thumbs down MDSPerth

Quote:
Originally Posted by Mary4Mike View Post
Carol,
I posted on your other post. Just saw this and wanted to comment about what caused your MDS. I would guess the radiation for breast cancer, but one can never be sure. I agree with Scott that the doctors we have come across through this journey really don't seem that interested in the why. They don't really ask questions about past exposures, etc.
I hope you come away from Mayo with a few more answers to your questions. I hope they give you an access to contacting them. I guarantee that you will walk out and think of something you forgot to ask. New questions will be forthcoming all along the way. Just remember this forum and hopefully it will be a help to you.
Mary
I have been reading the forum for a while but today is my first post, and I am a relatively new carer around this insidious disease. My partner Paul (62) was diagnosed in July 2012 with (low) high risk MDS and is being treated in Perth, Western Australia. We too have found and discussed the lack of questions (with the exception to the generally quoted causes) relating to any past exposures quite strange. Where the treatment and approach cannot be faulted, one would have hoped that they might be more interested for the sake of reseach purposes.
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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  #10  
Old Thu Sep 20, 2012, 12:26 AM
kris kris is offline
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Smile There is hope and understanding

I agree with trump 64...go to the AAMDS conference in Chicago. These conferences are full of great information and positive energy. Remember knowledge is power!

Each patients disease symptoms, staging and prognosis are very different. Learn about the WHO classification and the new MD Anderson scale. Ask questions until you have understanding and then ask more. Read all the information out there and ask how does this refer to and affect me. get your answers and a second opinion if needed.

Watch and wait is a good thing. Don't use all your ammo to early or there will be nothing left when it is needed to save your life
Keep us all posted on your progress.
kris
.
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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  #11  
Old Thu Sep 20, 2012, 12:03 PM
cdseibold cdseibold is offline
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Update from Mayo

Met with wonderful Mayo doctor, Dr. Elliot. Very smart young lady. She suggested additional tests and asked me to join a study that only required donation of current samples - blood, marrow and cheek swab. No problem agreeing to that.
Gave a ton of blood samples. Should look like a prune.
Did another bone marrow yesterday. Again they did lots of samples.

The folks here are so professional and the sampling goes so well. Mayo is an amazing place. Also very MN nice.

My bone marrow had a fish analysis done previously. But Mayo will be doing some additional genetic testing actually looking at more chromosomes (?) Not sure how this is done. More of the wonders of DNA testing.

The pathologists here want to look at original slides or new samples which is good. I really want a second opinion on the previous report.

We meet with Dr. Elliot to review test results on Friday late. We are spending alot of days away from home but hopefully it will be very useful.

Thanks for all the reply's. It helps so much to know that I am not alone.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #12  
Old Thu Sep 20, 2012, 12:35 PM
donna j. donna j. is offline
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Carol,

You sound like you are in good hands. My dr came out of Mayo and is very knowledgable. I wish you the best and welcome to the forum.

My one question: did they give you conscious sedation for the bone marrow biopsy? Or was there just no discomfort?

thanks,

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #13  
Old Fri Sep 21, 2012, 09:29 PM
cdseibold cdseibold is offline
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Bone Marrow Biopsy

This is my second one without sedation. They are very good with this at Mayo. My best advise is to take an ipod and listen to relaxing music. If you have done natural childbirth training, it is not bad at all. Not looking forward to more in the future.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #14  
Old Fri Sep 21, 2012, 09:34 PM
cdseibold cdseibold is offline
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Quick Update on Mayo Visit

Met with Dr late today. Ran late as she was waiting for pathology and chromosome testing.

So the results are in but mixed. The chromosome test found 17q defect on 3 of 20 metapanels. This suggests that yes I do have MDS.

But the pathology results are such that the pathologist said she/he couldn't be sure it was MDS. The pathologist is going to review the slides with other pathologists.How many get to vote? Reminder that my previous pathologist said yes, MDS for sure.

I will get a formal written report and a call from Mayo Dr about Tuesday. Can't wait to see if they all agree on MDS.

More later.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #15  
Old Fri Sep 21, 2012, 10:03 PM
cdseibold cdseibold is offline
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13q

Sorry but I mistyped. The chromosome defect is a 13q. Need to do some research. Any comments?
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #16  
Old Sat Sep 22, 2012, 03:36 AM
cathybee1 cathybee1 is offline
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I found some light reading for you, which suggests that immunosuppressive treatment has had positive results for people with that type of mutation.

https://ash.confex.com/ash/2011/webp...aper36626.html. Don't be surprised if there is not agreement among doctors regarding diagnosis. That's not uncommon. Be sure to request copies of all the reports from your bone marrow biopsies, FISH, etc. The first time my husband and I read one of his, we had to look up every other word. This group literally saved my sanity and helped us figure stuff out.

Don't be afraid to ask questions about your bloodwork, your bmb results, whatever. Everyone here is great, and whining is permitted!
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #17  
Old Sat Sep 22, 2012, 09:20 PM
cdseibold cdseibold is offline
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13q deletion

Thanks for the url to the interesting article on 13q deletion.
I must remember to bring that up with Dr at next phone conference. I am anxious to see the formal chromosome report from the Mayo lab.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #18  
Old Sat Sep 29, 2012, 08:22 PM
cdseibold cdseibold is offline
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Call from local hematologist

Got a nice call from my local hematologist to update me on Mayo findings.
He summarized that the results confirmed the earlier low risk MDS diagnosis.
I am anxious to read the actual report and Monday will call to confirm that a copy has been sent to me by Mayo or that I can pick up copy from local group here.
I am sure I will have lots more questions. I did ask about the difference of 2% vs 4% blasts in the two bone marrow biopsy results. He explained nicely that it is a sampling problem and does not indicate a difference in results. Makes sense that the critical number is less than 5.
I questioned about the difference in FISH test vs MC that Mayo did. He stated that usually the FISH would be more specific for the 13q deletion than the MC. OK, so why seen on one and not the other? Every answer seems to lead me to more questions.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #19  
Old Sat Sep 29, 2012, 08:37 PM
Chirley Chirley is offline
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My FISH showed normal cytogenetics however a micro assay showed del 15q 11.1-11.?

I think FISH only searches for predetermined and usual cytogenetic problems, changes that are more likely to be associated with hematological malignancies.

At least, that was how it was explained to me.

Regards

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #20  
Old Tue Oct 2, 2012, 09:53 PM
cdseibold cdseibold is offline
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Call from Mayo

Get this - my Mayo hem Dr called on Sunday afternoon and talked to both my husband (at home) and I (out shopping) at great length about the report that was being mailed to me.

Wow, the extra effort has me floored. Go Mayo. You are the greatest!!!

Now the results. Still a little confusing. The pathologist cannot call the bone marrow sample as MDS.The genetics study says yes due to a 3 out of 20 metaphase result of a -12q anomaly. In conclusion, MDS is sometimes a little iffy to really pin down.

Mayo Dr wants to do more frequent blood tests and bone marrow. She suggested every 2 weeks for blood test (local hem Dr wants to wait until Dec or more than 8 weeks). Any comments on this from the rest of you?

Will give you more data after I have a chance to read Mayo report.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #21  
Old Tue Oct 2, 2012, 09:57 PM
cdseibold cdseibold is offline
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Fish vs More genetic typing

Yes, the FISH testing is aimed at the more specific genetic changes that are known to be an issue with bone marrow disease.

But the surprising part of my results is that the FISH does look for the same defect that was found in my gene testing at Mayo. So it is a negative finding in the FISH and a positive finding at Mayo by karotyping.

In my friends hematology book it says that the % frequency of the -12q change is found at a 5% level in MDS. I'm not sure how old this data is. The book doesn't talk about the prognosis of this particular result.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #22  
Old Tue Oct 2, 2012, 10:02 PM
cdseibold cdseibold is offline
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Opps got the numbers wrong again

Make that a -13q deletion which is at a 2% level . The reference is from an article by Hofmann and Koeffler in the Ann Rev Med 2005.56:5
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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  #23  
Old Tue Oct 2, 2012, 11:01 PM
Chirley Chirley is offline
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I looked up my gene deletion and I wasn't able to find any link between the deletion and MDS but it was mentioned as having a link with some form of Leukaemia (can't remember if it was AML or not).

This is a moot point at this stage anyway because my haematologist has told me that I probably don't have MDS. However, numerous letters written to my GP by him says I have MDS....my medical chart says I have MDS.....my last 5 BMBs say I have MDS.....the Cancer Registry with the Federal Government says I have MDS....my neurologist says I have MDS etc, etc.

I did think that I had been misdiagnosed with MDS and I did have copper deficiency the whole time but I am now overloaded with copper and my counts are dropping so I'm becoming concerned that the diagnosis may change again.

I'm at a point where it really doesn't matter what it's called as long as I feel okay.

Bone marrow diseases seem to be a diagnostic nightmare.

Regards

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #24  
Old Thu Oct 11, 2012, 04:02 PM
cdseibold cdseibold is offline
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Update 10/11

Got my official report from Mayo. Pathologists still think they cannot call it MDS based on their samples. But the karotyping found -13q in 3 of 20 metaphases. So that moves the score from no to probably.
Dr. said that you can't really do a prognosis if the diagnosis isn't definitive. OK?
But if she was pressed, she would say it was intermediate level (not what I want to hear) MDS. She recommends CBC every 2 weeks to see what is happening. This is more aggressive than what my hematologist locally has suggested.

Found an interesting article that suggests -13q is a lower risk and should actually be called atypical aplastic anemia. With that diagnosis immuno suppresive drugs are suggested. Here is url http://www.haematologica.org/content....full.pdf+html

I'm not sure if this applies to me but it can be a topic of conversation at my next appointment.

Good news: I am going to the AA&MDS Symposium in Chicago. Hope to see some of you folks there next week. Looking forward to learning more about MDS and AA.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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