Myelodysplastic syndrome (MDS)

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

ShadyGuy said:

Rocquie and Po

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.

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

Rocquie said:

Blood

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

 

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

I have Hereditary Hemachromatosis, I can legitimately chime in .  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.   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

I realize this is a 3 year old thread but I will ask a question here and would like to hear more of your thoughts on MDS.

I finished 6 cycles of Bendamustine-Rituximab at the end of April and had what my doctor called a complete response. However, over 4 months later, my blood counts are still well below normal ( WBC, RBC, hemoglobin, ALC, platelets, neutrophils). The blood test two days ago showed my RBC and hemoglobin decreasing ever so slightly after being steady in previous months following completion of chemo and platelets going down after increasing steadily the previous months. My doctor seemed a bit puzzled and has ordered a bone marrow biopsy.

From reading this board and trying to educate ( scare) myself, I came across MDS. Not sure if this is something I should expect or whether it is a case of delayed neutropenia as my doctor initially thought.

Funny thing is I have been feeling well with lots of energy, working out, great appetite and no symptoms of any kind whatsoever. Then again, generally speaking, I understand MDS has no symptoms early on but gradually the symptoms like fatigue, weakness, etc, show up.

Not sure why I am posting this. Don’t want to jump the gun and come to a conclusion it’s MDS. I am sure my doctor will tell me the course of action once the BMB takes place and the results come out. I guess I just want to prepare myself mentally and have an idea what to expect given the wealth of knowledge and experience here on this board.