| | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 38 | I have just been diagnosed with Myelodysplastic Syndrome. (MDS)
It is a result of all the treatments for my oral cancer.
It is a form of Leukemia.
I did everything I was supposed to do to keep my SCC at bay, which I have done for almost 8 years.
Now I get rewarded with another cancer.
I am not a candidate for a bone marrow nor stem cell transplant. I was told due to the damage and what the other chemo and radiation treatments have done to me over the years, I would never survive the transplant.
My option is a drug called Vidazza. You feel worse for a few months until it builds up in your system to help your ability to create non dysfunctional blood cells, platelets, etc.
This drug will only help for awhile.
My MDS comes with a pretty definitive expiration date.
I am so angry and feel so cheated.
Has anyone else developed MDS after receiving treatments?
I don't know what to expect.
The MDS sites talk about the disease but I would love to connect with someone else fighting these 2 cancers.
Thank you.
'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Cindy, Im so very sorry to hear you have yet another post OC condition. You have been thru so much already. MDS is something Im not familiar with. I did a quick search and found a website. It looks like they have a message board so hopefully this can help you. I dont know have any info about this site, hopefully questions get prompt attention. At least its worth a shot to try and connect with other survivors. MDS website I wish I could help you more. ((((HUGS))))
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I'm sorry to hear of your latest news, Cindy, and wish you the best. Hopefully this drug will help or something else will.
All the best!
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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