New to site

[rpenrod1]

Hi, my name is Robin and my mom has been diagnosed with MDS. She started her first round today with Vidaza. I thought I had done my research lol, but there is so much to learn. this site is a wonderful place to find info. My mom is 68 years old.
her rbc today 10.2
wbc today 1.6
platlets 56,000

As a newbie is there anything in particular I should watch for?? she has moved in with me, so I can help out.. Truth be told I want to pull the covers over my head and cry. I know I have to be strong for her. It is comforting to know there are others out there managing this dreadful disease and leading meaningful lifes.

[bubbymcgan]

Originally Posted by rpenrod1

Hi, my name is Robin and my mom has been diagnosed with MDS. She started her first round today with Vidaza. I thought I had done my research lol, but there is so much to learn. this site is a wonderful place to find info. My mom is 68 years old.
her rbc today 10.2
wbc today 1.6
platlets 56,000

As a newbie is there anything in particular I should watch for?? she has moved in with me, so I can help out.. Truth be told I want to pull the covers over my head and cry. I know I have to be strong for her. It is comforting to know there are others out there managing this dreadful disease and leading meaningful lifes.

Robin, sorry to hear about your mother but do not despair. The worse thing about the MDS for me (I'm 73) is the constant tiredness and the inability to do small things without getting more tired, winded, and trembling. Everytime I catch myself beginning to have a "pity party" I simply think of all the other unfortunate people and the really severe troubles they have to endure. When I do that, it brings me back to reality . . . I'm actually a very lucky person. Do your best to keep your mother's spirits high, let her know she can rely on you always, and she will stay happy (as well as yourself). God Bless you for being a caring daughter, and God Bless your mother.

[ESeda]

Sorry you have to be going through this scary time with your mom. Welcome to the site, and ask any question you like, someone likely will ber able to answer it for you.

Let me say now that your mom has started Vidaza, this is a very good drug. Results have been very good for most patients treated with it. Just keep in mind not to be afraid if your mom's bc's drop early on when taking Vidaza. This is common. Actual response starts after maybe three or four cycles. My wife has be on Vidaza for six cycles and is doing well. So be patient.

By the way, do you know what level of blast she has and if there is any chromemesome damage. These are indicators you want to be aware of. Your mom is lucky to have a daughter who cares. God bless you and keep you strong.

Eli

[rpenrod1]

Thank you for your kind words of support. My mom's case was a little different. Originally she was diagnosed with Eurlickia. It is an infection caused by a deer tick bite which mimics MDS. This happened in July.She was treated for this , blood work shows out of system , so they have been watching her levels to see if they went back to normal level.. They did not so now back to the MDS

At treatment today I asked the nurse about the blasts, I have to ask the Dr. He was out today so I will ask tomorrow. No other abnormalities.I did ask for copies of all blood work to date . I want to chart everything. I am sure I will get the lingo but it is very confusing.

Mom a little nausea today. went to pharm to fill the nausea drug and the cost is 1000 for 20 pills. I told them I would be back. The nurse gave me 6 samples to finish up this round. Dr. has to call the insurance to say this is the only thing that will work. Wow, this is an expensive disease. My mom is on ss, so I am spending every free minute contacting every agency out there. If anyone is from MO. I can pass on tons of stuff for Seniors, especially if they are sick.

I am trying to be a good daughter, my brother lives out the country, so I am alone in this. There are days I want to scream. Really loud. It is nice to have a place with such support. My prayers and blessings go out to each of you.

[bubbymcgan]

Keep your chin up Robin and try not to let the situation get you down. As long as your mother sees you smile . . . she will smile. I know this is hard on you to handle alone but just stay with this group and you shall receive more encouragement than you ever thought possible, for we are all together and are bonded by a common ailment. You and your mother will be in my prayers.

Bill

[Ruth Cuadra]

Hi, Robin.

It's not clear to me from what you posted about your Mom's diagnosis and treatment for "Eurlickia" (I think it's spelled "ehrlichia") if she was already diagnosed with MDS when that happened or if her MDS diagnosis came after her treatement for ehrlichia. A diagnosis of MDS requires a bone marrow biopsy to look at the shapes (morphology) of the bone marrow cells and to test for chromosome abnormalities. The information from those tests would tell you what subtype of MDS your Mom has and could affect her treatment options. Do you know what subtype she has?

If you haven't already done so, you can get an information packet on MDS from the Aplastic Anemia & MDS International Foundation. In the meantime, you can download their Basic Explanations booklet here.

Regards,
Ruth Cuadra

[rpenrod1]

My mom had a blister on her hand. went to the dr. gave her antibiotics, nothing happened. Thank goodness her reg dr. ordered a ton of blood tests. We got a call to go see an hematologist. They reviewed the blood, did a bmb that day, and first thought from the results were acute leukemia. They admitted her to the hospital that day, and did a transfusion. They had her in a chemo room and we were told she would be in the hospital for the next 30 days. They did not think she would live without treatment. One of the blood tests ran found traces of the bacteria for eurlickia (sp) . We met with one of the top doctors in the Country who specializes in this at Barnes hospital. My moms blood tests were sent to 5 different hematologists to get a census. We were told that the bmb bone looked fine. It took 30 days for the biopsy to come back. Because Eurlickia
can mimic MDS, immature white blood cells, lowered red blood cells and lowered platlets, my mom was treated for that bacteria. This is while waiting for the biopsy. I guess the hope was that is what it was. after the treatment her blood was retested and no traces were found. the doctors then monitored her blood for the next 8 weeks. Since her cells continue to drop, they went back did another bmp and have concluded it is mds. Their belief is that she may have gotten a false /positive on the eurlickia. The good news is that my mom went to the Doctor. Had she not had the blister that wouldn't heal, she would have just thought she was run down. My mother has no other illnesses, has never had an operation, blood pressure , everything fine.
Hope that clarifies.

[rpenrod1]

PS: The doctors have stated several times, that the way my moms blood reads, is unusual even for MDS. I guess some of the traits that should be there are not. We have gotten a second opinion, and our dr. has sent lab results to other hematologists for a third, fourth and fifth opinion. They all concur. By coming on this site, I have read a ton of information that I need to discuss with the doctor. No blasts have ever been mentioned, but I am going to ask. My mom has a tendency to hear what she wants, and to twist things around. Now that I am here I am able to go with her, I have a notebook and plan to write it all down. Because my mom never really went to the doctor for more than a checkup it is difficult to determine how long she has had this. Again, I hope that clarifies.