Point me in the right direction?

[Erin Dixon]

We lost my grandfather just over a year ago to MDS, his brother 5 years earlier to MDS and this week my grandmother was diagnosed with MDS. All were/are in their late 70’s and all grew up in El Monte, CA. None were military, but my grandfather was a firefighter for 30 plus years.

Is it normal for a family to have so many people diagnosed with MDS? I am just starting the research and saw some things about agent orange, but again … they weren’t military. I am concerned about my mother and her sisters who will very soon have lost both parents and an uncle to this cancer. One would think they are all susceptible to it as well as my generation. Can we be tested to see if we carry the “gene”?

Any help anyone could throw my way would be great.

Thank you,
Erin

[Sherry Pratt]

Erin, What type of MDS did they all have? There are several types of MDS. I have Reractory Anemia with Ringed Sideroblasts (RARS). My dad had a form of MDS also but his was Thrombocytopenia driven. My dad was in WW II. I have heard many explanations as what causes MDS. One particular chemical exposure is benzene which is all over America in many forms. It is in lotions, certain insecticides, cotton fields in the south used to be sprayed with a chemical containing benzene. So there is no telling where we get exposed. I spent a lot of time in a microbiology lab when I was 20 handling liquid forms of benzene. I see a specialist at Ocshner’s in New Orleans and he specializes in MDS. He says it is usually not hereditary and that we really don’t know the cause exactly. I totally suspect our environment and the numerous chemicals we are exposed to daily in America.

[LeAnn Duke]

Hi Sherry, my name is LeAnn and I started out with RARS. I was diagnosed in June of 2015 and have tried the Erythropoetin injections and they didn’t work. I’ve been transfusion dependent since September (basically was dependent since June 2015). My blasts are at 4%. I started out with my RBCs being involved and now the platelets are dropping steadily. My husband and I have been to Cancer Treatment Centers of America in Chicago and just got back from MD Anderson. The diagnosis is confirmed but since the platelets are involved I am now RCMD. The The Dr in Chicago thinks I should have already been on Vidaza, and we go back in two weeks to MD Anderson to hear the results of the bone marrow biopsy and cytogenetics tests they did. My oncologist has spoken to the Chicago dr and is in agreement that Vidaza is the way to go. Any opinions? Have you started any treatments at this time?

[Sherry Pratt]

LeAnn,
I am on Revlimid 10 MG and it seems to be working. Hgb now has bounced up to 9.8 once. It does however lower WBC and Platelets, but you get off of it for 7 days and they come back up. My oncologist in my home town wanted to put me on Vidaza but my specialist in New Orleans at the Ocshners Research center says no. He is a great doctor and specializes in different types of MDS and stem cell transplants. I hope you get the correct treatment. I took Erhthropoetin injections too and they didn’t work to raise my red blood cells either in the long term.

[LeAnn Duke]

Sherry, thanks for responding. I certainly don’t know which is the way to go. The dr in Chicago said if I was his patient he would have already had me on Vidaza because I have always been transfusion dependent and he considers my stage at Intermediate 1. The Dr at MD Anderson in Houston says that I am still relatively low risk and mentioned Vidaza but they also work a lot with clinical trials and mix drugs to get better effects. But you must go to Houston to receive the clinical trial drugs. I certainly understand the reason behind that, but it just doesn’t seem feasible due to the expense. I live in Tennessee so travel is a huge consideration. Money, time away from my husband, who cannot always go with me and I don’t want to have to travel by myself. The other thing is that I want my treating physician to be close in the event of something going wrong. All of this is new to me and I am uncertain as to the best way to go. I feel good about my oncologist who is only an hour and a half away, and the local hospital where I get my transfusions (and hopefully will be able to start the Vidaza treatments there as well, are getting used to seeing my face and knowing the disease. We primarily went to the other places for opinions anyway.

My brother in law was on Revlimid for about 4 years for Multiple Myeloma. He recently had a Melanoma on his arm so they stopped the Revlimid and are now watching his markers. So all these drugs give me questions and I know so little about them. Do you take a pill or is the treatment an infusion? Do you know why your Dr didn’t like the idea of Vidaza and why he chose Revlimid over it? I am not crazy about taking the infusions, as they are 7 days a week. Did the Revlimid cause you any nausea or vomiting and do you have to take anti nausea meds often?

It seems that I never get a clear answer about these things from any doctor. They kind of brush those questions off as if they aren’t really important. Like bone marrow biopsies: They will tell you that this procedure is pretty much painless and really don’t want to put you under for the procedure. But I am pretty sure none of those people who do the procedure has ever had one done!!! Nor have they ever taken these drugs so when I am concerned about nausea, they say it is a light chemo and most people don’t have any trouble with it, but when I read about people who take it that is the first thing I read about. One Dr said the stem cell transplant was an easy thing. It takes less time to get the stem cells than it does to get blood. But I know he left out what they do to you to get you ready for the transplant. My brother in law already has had one and I was there to help take care of him after it was over. But my sister shared what he went through so I know there is nothing easy about it.

Sorry to go on and on, but I appreciate your response and will see what is in store for me as I go along. Take care!!

[Sherry Pratt]

LeAnn.
So far I have not had a transfusion. My Dr. specialist is in New Orleans at Ocshners. They also do trials there.
The only side effect I get from the Revlimid (a pill, 10 mg) is some gastrointestinal distress but not much. It is boosting my red blood cells. I take it 21 days and then lay off it for 7. By the time I get to the 21st day it has affectd my WBC and platelet count by dropping them, but not to a real dangerous level. My specialist in NO tells me I am low grade with the RARS. I agree on the BMB. Last one I had done a nurse practitioner did it and she had to try three times to get the bone sample. I passed out and my blodd pressure dropped to a level they couldn’t read. I told them from now on I will just be put under. That was awful. I have had 4 so far. 2 under and 2 awake. You are right. They have never had one so how on earth could they even think they know what we go through. I do love my specialist in NO though. The hemotologist I see here is great for other types of cancers but he wants me on chemo all the time. I finally convinced him to do whatever my specialist says. I take 50K units of procrit every Tuesday and now the Revlimid. My RBC can fluctuate up and down from 9.8 to 8.0. So far I have not gone below 8.0. I pray for healing every single day. If you would like to talk instead of this writing here you could email me at pratt8075@gmail.com

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