sweetea my dad had the bad memory. once he became plts dependent he really went down with his memory. some of it has to do with the oxygen levels I think. that and not enough blood going thru the body. his counts I imagine are down due to the chemo. like mike said some of it could be chemo fog too. talk to the drs.

Hi: I live in Maryland, dealing with blood issues since 2005. I
understand MDS is a disease when you get older, I'm 75.
In addition it can be a complication from chemo, I had a mastectomy & 6 mo of chemo in 1995, and then possibly from second hand smoke. My husband of 57 years smoked the first 15 years of our marriage, so it looks like I had 3 strikes against me
from the start.

I had a bone marrow biopsy in 2009 and was asked to obtain the
slides from a bm test done 2005 to compare. It was then that I was diagnosed with MDS. I was referred to NIH but was too old for one protocol, cut off was at 73 years and I would turn 74 years the following month. I was not sick enough for the other. I wasn't having blood transfusions due to previously diagnosed with Hemochromatosis (excess iron), a gene from both my mother and father. To correct excess iron most patients have
phlebotomies, but taking blood was not an option due to the anemia. I started a drug Exjade and now have the Hemochromatosis under control.

In the beginning (2005) I had Procrit shots when my hemoglobin fell below 11 and sometimes even gave the shots myself injected into the thigh. I changed doc and he ordered Aranesp inj as they were similar drugs but given every two weeks instead of weekly Procrit. Then insurance changed how they paid.

By 2009 I asked to be referred to another doctor who I see presently. I was tolerating hemoglobin between 10-11. It was only the last 10 months that the hemoglobin dropped below 10 and I was eligible for Aranesp or Procrit shots due to insurance. The bone marrow is not responding to the shots every two weeks. After a bm done in July, I will continue with blood testing every 2 weeks and whenever the Hemoglobin is below 10, I will continue to get Aranesp shots. The Hemoglobin on Aug. 3rd was 8.1. If it drops below 8 at anytime, I will get a blood transfusion. However, this is just a short fix.

In addition, I will take 50 mg Danazol, a pill twice daily for 6 weeks
to try to stimulate the bone marrow. IF this doesn't work...the alternative is chemo.And that's another story. I'd like to hear from anyone regarding their experience with Vidaza or Dacogen. I
understand it's 5 days straight and repeated every 4 weeks for 4 months.

My only complaint at this time is just tired and shortness of breath.
I just don't have the energy level to do what I want. Just have to take one day at a time and go from there. I take this as a wake up call and need to take time to smell the roses.

Hi Becky Jean and welcome to the gang.

I was diagnosed three years ago with MDS. I'm not familiar with all the things you have been through but was started on Dacogen at the time. The 5 days straight every 4 weeks (mine ranges every 4-6 weeks depending on schedules, etc). I have been on it ever since, and a couple of weeks ago had my 140th treatment. For me, and most I chat with, the side effects of Dacogen are mild. The week of treatment and the week after are the big hits for what I call chemo fatigue and fog though not disabling. Care has to be taken on avoiding those who are sick or things like cuts, etc due to the white blood counts (immune system) being low. Plateletes usually go down so avoiding cuts is a part of life. Occasional lip sores or the plumbing getting clogged happen for me also. My oncologist has one lady who is over 80 that has also been on Dacogen for quite some time. It has at least kept me realative steady for these years. One issue I have is that if an ER or other doc looks at my low blood counts they tend to panic and want to put me in the hospital until I can get them in touch with my doc. My hgl runs between the mid 7's to around 9, occasionally above so I am transfusion dependent.

I don't know if that helps but I hope so. Life is good and smelling the roses is a priority. One clue is all the places we never realized were there to find roses to smell.

God Bless and I hope you find the info you need. Do be careful of a lot of the things you'll find on the net as if you look much of it is several years old.

Mike

Omgosh! I can't imagine continuing this for more than 3 years. I know after the 5 treatments M-F I have to return the following Monday for another type inj. to restore the immune system. But life is good and I can sure fine roses somewhere to smell. Thanks.

Hi Becky Jean,
I was diagnosed with MDS this past May. Since it is effecting both platlets and red cells, an ESA like Procrit is not the anwser. As a result I was put on Vidaza treatments. I have had 3 rounds of chemo or 15 treatments. I am told that it generally takes 4 rounds before you see improvement assuming it works at all. It appears that it is working for me. My hemoglobin has gone up from a low of 8.9 to 10.1 and my platlets from a low of 43,000 to 147,000. I don't know if this trend will continue. Ideally both Vidaza and Dacogen is administered to make you transfusion independent. The treatments are generally given for as long as they work. Like all chemo, your body can build immunity towards treatment and the disease can progress making it less effective. The most time I have heard regarding treatment is 3 years but again there is no stated limit. The one thing I am convinced about is you cannot rely soley on medical treatment. We have MDS because something effected our DNA causing our stem cells to malfunction. There is a lot of literature regarding integrated medicine where you combine traditional medicine with natural treatments. I began juicing raw veggies everyday and drink wheatgrass. Vitamin and mineral supplements should also be considered. It is so important to me to feel I have some control over my disorder.
I hope you respond to treatment. Keep us posted.

Lou

Becky
I would advise you ask about what they are going to give you the following Monday. The Dacogen is a chemo that knocks your blood counts down pretty good. But there is more to it than that. There is the concern of your bone marrow test results as to how many blasts you have that has to figure into this. A doctor insisted on giving me a drug called neupogen which increases the white blodd cell count (to try and boost my immune system). The problem is that it also increases the number of blasts in you bone marrow. My doctor told me based on my blast count to refuse this medication out right. My blast count has varied between 16% and 23% for some time. 20+% is normally considered full leukimia but with my blood/lab history I fell into the MDS diag. Any increase of this type in the blasts could have been severe for me.

I'm not saying your doctors are wrong, just be informed, ask questions and work with the doc to make decisions. The doctor who insisted on giving it to me had no idea of the very risky side effects it could have had.

As for 3 years on the treatment, you'd be suprised what you can do, especially in the good Lord's hands.

God Bless
Mike

Lou & Mike: Thanks for your comments. So far the platelets have been in the High range, but just barely. I was told the name of the drug to restore the immune system but forgot to write it down. And he did mention blasts. It has not progressed to Leukemia at this time.
I return for lab and injection next week, doubt the Danazol will have a change to change anything but you never can tell.
We'll discuss this in full the end of Sept. I feel I am in good hands and he knows what he is doing. I just need to be prepared with the right questions,
Thanks.

Dear Becky Jean,
I am a 67 y/o female who was diagnosis with MDS deletion 5 q in 2006...I was put on Revlimid and all was well until this July when my hemoglobin dropped to 7.6 and I rec'd 4 units of cells. My hemoglobin went down again and I rec'd 2 more units of cells. They just started me on Aranesp a week and a half ago and it is just beginning to work. I had a CBC today and my wbc are just within normal, wbc are still low and platelets are low. I had a bone marrow test last Friday and tomorrow will find out if I have CML. I feel that the Aranesp is working and I don't have leukemia.
I am also a breast cancer survivor for 10 years. I didn't have chemo, but had radiation. I wish the best for you and all the friends in here. Sandra

Sandra: .
My diagnosis...MDS - Trisomy 8, everyone is different so treatment
is different. Congrats on 10 yr survivor. I'm thinking your hormone receptors were probably positive. Did you take tamoxfin?
Hope your test results show improvement.

Hi my name is Yogi Sachdev and I live in England. I have been diagnosed with MDS about 2 years ago. I have had 3 blood transfusions so far each of 2 units to bring up my Hb. During the last 9 months I get high fevers every 10 days. I get these fevers like clockwork, and they are accompanied by swelling and pain in my Ankles and knees. The fevers last for 7 days and we control them with Paracetamol. My Haematologist has done every test under the sun to find out the cause of these fevers but has been unable to do so. Does anyone in the forum have a similar experience? If so please post it on the forum. Many thanks. Yogi

Hello All: Just wanted to share the good news.
Blood levels are still low, got my normal fix of Aranesp but didn't need a blood transfusion. The DANZOL must be working.Anxious to see what another 2 weeks will do.

HGB up from Aug 1st. of 8.1 to 8.6.
WBC 2.8, RBC 2.5
HCT still LL 23.9

I think depression has set it. After losing so many over the last year we lost my brother in law last week. Husband is having surgery tomorrow and I still need my back fixed. Missing Dad and his birthday is Sunday. I thought it was suppose to get easier. I read here still almost daily just to see how you all are doing. Can I tell you all I just feel so lost? I know you are still praying for me and I need it more now than ever. Much love and peace to each of you. I am praying for you all too.

Poshshorty, I am sorry that you have had so much to go through this past year. Just keep in mind that the Lord does not give us more than we can handle although at the time it sure feels like he has. You are in my prayers that your husband's surgery goes well and your own health issues get better. My Father passed away 5 years ago and all those first's are so hard, but it does get easier as time goes by.
Take care & God Bless!

Hey there poshshorty our friend,

As Janet said God will not give you more than you can handle. There is somehting to say about the footprints poem/song. You'll look back and see only a single set of footprints in the sand when He is carrying you through the really hard times in life. One thing about your friends here, we've been through a lot of what your going through.

My wife and I went through losing 7 of her family, including her Mom and Dad in just two years and the family was looking to us for a lot of what needed to be done. It's a coincidense that as I write this I'm watching the Gaithers and their singing God gave us the song, Jesus and tells how they tried to knock Him down and take Him out but God wouldn't let them do that. We look back at those two years and many other tough times in our lives and see where we were beat up, often with bruised knees from getting knocked down and praying, but also seeing how God didn't let this ole life knock us down and keep us there. He always got us up, dusted us off and kept us going just as He will do for you and all your going through.

It sounds like I'm preaching but I just tell about what I've been through. In all those dark valleys we end up walking thorugh, He makes sure His light guides us out to the other side.

Stay strong and know God is hearing your name a lot these days.

God Bless
Mike

Postshorty, I couldn't say it any better than Mike. I would suggest that you tell your doctor and see if he would put you on a short term antidepressive. I did and it helped a lot. Peace. Sandra