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Myelodysplastic syndrome (MDS)

ShadyGuy's picture
ShadyGuy
Posts: 400
Joined: Jan 2017

Just wondering if anyone here has been diagnosed with Myelodysplastic Syndrome (MDS) - aka pre leukemia. It can be caused by bone marrow damage inflicted by chemo. My doc thinks I may have it and has scheduled a BMB To find out. All I know is what I found on the web which is pretty grim. How do you deal with the symptoms? Hopefully my anemia and chronic infections are being caused by some more treatable condition. Time will tell. Really looking forward to the BMB (NOT!)

Rocquie's picture
Rocquie
Posts: 832
Joined: Mar 2013

ShadyGuy, my bone marrow was slow to recover from my chemo. I continued to be anemic for a few months and my doctor was suspecting MDS. He also threatnened me with a bone marrow biopsy. I'd had quite a few blood transfusions and he was hesitant to order any more because he bacame concerned about iron overload. 

And then, in four weeks time, my hemoglobin rose from 8.7 to 10.8 and things were moving in the right direction. In time, everything was back in normal ranges. I hope the same happens for you.

Meanwhile, there is a writer, Jane Biehl, PhD, who regularly writes for CURE magazine about MDS, which she has. Also Robin Roberts, with Good Mornning America, has MDS after treatment for breast cancer. 

Just a mention. . .there is a drug, Procrit, which is used for chemo inducted anemia. Several here have used it. I know nothing about it because my doctor did not want me to take it. 

Some food for thought!

Hugs,

Rocquie

 

po18guy
Posts: 996
Joined: Nov 2011

At the time of my transplant, I had 20q deletion MDS at about 26% of my marrow. Fortuately, it was a relatively low risk variety. The transplant seems to have eliminated it, once we tapered immune suppression from its original level. MDS is like lymphomas or leukemias in that there are several varieities of it.

ShadyGuy's picture
ShadyGuy
Posts: 400
Joined: Jan 2017

thanks for the hints. I am scheduled to be at MD Anderson on the 11th to see what they say about it. However I am seriously considering just riding it out another couple of months before I go. I am so tired of this dominating my life. I try to just grin and bear it. I force myself to walk 5 miles per day but have to do it in 2-3 sessions due to muscle pain. It does help. I started taking B12 and methyl folate which have helped. Gotta decide today about Houston. I am also seriously considering ending my Rituxan maintenance to see if that helps.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Shady, I described on one of the other threads that a few years post-chemo, and following totally normal CBCs, I became quite anemic. Infusion iron rectified this, and the doctor was totally baffled as to the cause.

I found some results in my files.  At one point my serum iron (NOT hemoglobin) was 15 ug/dl.   'Normal range' was given as '45-175 ug/dl.'  Some labs list low-normal at 60 ug/dl.  After two weeks of iron infusion and a month wait, the iron levels returned to normal range, staying at about 70 or a little higher.

Anemia itself is a very complex thing.  I wish your doctors luck in figuring it out,

Rocquie's picture
Rocquie
Posts: 832
Joined: Mar 2013

Max, you are right, anemia is very complex. Indeed, I have always found blood to be mysterious. And I still don't understand how blood can have cancer. 

Several times during my infusions, patients would come in who had been diagnosed with hemochromatosis--iron overload. They would sit and get an IV set up. Then the nurse would bring a scale and glass bottle and set on the floor beside them. They would then hook the IV to the bottle and blood would start draining. After the correct amount was collected, the nurse would disconnect the IV, give the patient a snack and unceremoniously put the bottle of blood in the trash!

The patients had to do this every couple of months.

Who knew,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Rocquie,

I've heard of that condition, but never met anyone with it.  I was surprised to learn during my treatments that infusion centers see and treat a large variety of patients for conditions unrelated to cancer, or indirectly related.  I expected the "cancer center" experience to be gruesome, but it usually wasn't.  There was the occasional, rare patient too close to death to travel by car, delivered via ambulance service. My center, with about 40 stations, also had a few private infusion rooms, for people who, for whatever reason, had to have extra nursing care, or a private restroom.   

But mostly it was just average folks striving to get well.... I recall one day a youngish man walked in and got in a chair, chatted with the infusion nurse for a moment, who hooked him up. He began reading the paper like he was in a barber shop or getting a pedicure.  I spoke with him for a few moments, and he shared, "yeah, I 've been doing this five years." I don't know what his conditon was.

 

max

Rocquie's picture
Rocquie
Posts: 832
Joined: Mar 2013

I feel your frustration, ShadyGuy, and I completely understand it. I once cried out to my doctor, "would you please stop finding things wrong with me"! It can be extremely difficult to live a medicalized life. Whatever you decide about delaying your trip to Houston, and also delaying your Rituxan infusions, are your decisions to make--along with your wife. Please know I support you, no matter what.

Your friend,

Rocquie

 

yesyes2
Posts: 584
Joined: Jul 2009

Yes it's very obvious to me now that over 50% if not more of the patients at my infusion center are not cancer patients.  They treat a lot of patients short term who are coming in for IV antibiotics.  Then there are the artheritis patients, like me who get IV Rituxian or IV biologics, they also do the iron infusions, biologics for IBS, etc.  I go to the infusion center for Rituxian, 4 infusions a year, blood work for my bone marrow cancer (PV) every 4 weeks, takes the place of needing a port flush, and as needed a phlebotomy.  One of the times I was in to see if a blood letting was needed there were three other patients there for the same procedure.  If my in an IBD flare I also come in for IV fluids.  There aways seems to be people in getting blood transfusions too.  I also was treated here for my 2 bouts with my NHL.  Chemo for my breat cncer in 1992 was given in the doctors office.

I have been going to our local hospital, originally located inside the main building, as an out patient, and now their infusion center since Jan 2007.  Never more than 4 weeks without a visit.  Max, you certainly could call me a frequent flyer.  I love all the nurses and staff there, all super nice and great people.

illead's picture
illead
Posts: 837
Joined: Aug 2012

I have Hereditary Hemachromatosis, I can legitimately chime in Wink.  Guess having it be hereditary is even rarer, had to notify family members etc. I have been getting phlebotomies for about 3 years.  I was surprised also at the amount of phlebotomies they do at the cancer center, not sure all the different reasons.  A couple times they scheduled me the same time Bill was having his Rit inf, so I would just go to another room and then come back to wait for him to finish.  The first few times, you should have seen the horrified look on the nurses faces when they saw me in the chair. Laughing  I remember even when I was young the doctor would always comment on the iron in my blood.  Not a lot of info on the internet but I did find that it could cause arthritis, type 2 diabetes, and early onset of cataracts.  I have all three, had both eyes operated on for cataracts when I was 60.

Shady, I hope the best for you and know you will make a good decision. I sure hope it turns out not to be too serious, I know it's hard to have things drag on, we try to go on with our lives but so many obstacles can be difficult.  Hang in there.

Becky

ShadyGuy's picture
ShadyGuy
Posts: 400
Joined: Jan 2017

MDS is consider a form of cancer. Incurable except possibly by stem cell transplant.

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