Remission, I don't understand

[josey]

This may be a stupid question, but I don’t understand remission. It was my understanding that I had mutant stem cells which were not producing healthy blood cells. Unless you get rid of the mutant cells how can you make healthy blood? When you have MDS what do you mean by being in remission? I could ask my doctor, but I feel I would get better answers from this forum. Am I just missing some point here? Thanks for any help. Joanne

[Suzanne]

You are close to right. Before they said I was in remission they destroyed all the mutant cells with drugs. Since the chemo I have had many blood tests and bone marrow biopsies(each is just a small sample of course) and so farmy blood counts have been in or very close to normal range & they have seen no cells with the MDS mutation or the AML mutation The chromosome abnormality I had was also corrected and has stayed that way. As far as I know remission is when there are no signs or symptoms of the disease.

[josey]

Suzanne, your remission was a result of the chemo and other treatments. Do you think the only way to go into remission is with chemo drugs? Was it because of the AML that they used chemo? It doesn’t seem to me that they use chemo for MDS unless it becomes AML. Is it possible to go into remission of MDS without using chemo? Have others here had that happen? I am done with the Aranesp and now he is going to start me on Epogen, I don’t understand why, the Aranesp didn’t do anything. I see now why someone referred to this as a confusing disease. Its nice to hear when someone is doing well, it gives the rest of us hope. I am really glad your treatment turned out good for you. Thanks Joanne

[Suzanne]

Quality of life was an issue for me. My original Hemo suggested the heavy Chemo right away but Hopkins, a Center of Excellence, suggested a wait and watch direction. They tried one drug trial and tested my sister for a match for a BMT (she did not match) And you are right they did not go the heavy chemo route until I developed AML. There are people who have gone into remission from MDS fromsome of the drug treatments. I have seen them on this forum. I have not seen anyone who went into remission without some kind ot treatment to kill the bad cells. Some of the new treatment seem to at least slow the development of the disease. As far as I know Aranesp and Epogen are used to stimulate white blood cells to keep you out of danger for infections and have no effect on the underlying disease. Someone who knows more may correct me on that.

[Neil]

Hi Josey.
Have another thought for your consideration.
Many of us are not in remission, but have low counts that are relatively stable. They are low, but not low enough to lower our quality of life significantly.
We get fatigued, but not excessively.
We do not present symptoms that outwardly reveal we have MDS. To those who do not know we appear healthy.
Aransep (and previously Procrit) have helped me. Aranesp keeps my HGB around 11.0
My WBC is in the 1.1 range with my neuts around 1.0. No real issues with infestions.
My platelets were 7000 last thur. but generally are 10,000. Do not have any symproms of low platelets.
Even though my counts are pretty crummy, they have been in this range for many years. I am careful around power tools, do not take any risks and drive very carefully. Make an extra effort to avoid reckless drivers and avoid crowds. At church I sit away from others as much as possible.
Some of us can have a pretty good QOL with MDS —as long as blasts are normal and counts are stable.
This has been my experience for 10 years and know a few others who have dealt with MDS for as long as 15 years and they are still doing well.

[patti]

Epogen is EPO for red cells. There’s aranesp and procrit and I believe in Canada they call it Epogen. They use neupogen or not as commonly, neulasta for white cells stimulation.

patti

[josey]

Neil and Patti, so far my counts are not getting worse, not getting better either. As Neil said I may be one of those people whose counts just stay low, I also have no outward signs of being ill. The tx I had made me feel better, I didn’t realize how tired and short of breath I was until the tx really perked me up. Since I have had a low platelet count most of my life I too have learned to stay away from skydiving ect. Perhaps with just some common sense precautions I will do ok with low counts for a long time. Having had Aplastic Anemia, this whole thing has really freaked me out, I remember those treatment years as a nightmare. My QOL is good now, so I should probably shut up and enjoy it. Thanks for the advice. Joanne

[chuckk333]

Josey,

I too, have been diagnosed with MDS (5/06) but continue to be symptomless with relatively low counts, but have maintained my life (Such as skiing, square dancing, church, singing in a chorus that rehearses every week, etc)as if I did not have the disease with some exceptions. I carry a hand sanitizer which I use frequently particularly when shaking hands or square dancing, I juice 1/2 pineapple everyday and drink it with black sesame seeds and I juice vegitables and/or fruits every afternoon. I get my blood CBC every 3 to 4 weeks and my counts stay in the range where I can continue my QOL.
When I return to CA I intend to have another BMB to see if there have been any signicant changes. In other words,for me, wait and see with out treatment has been OK so far.

Chuck

[maueenh]

Chuck,

I am thrilled to hear that you have been able to maintain your lifestyle and keep your counts in check. Just curious……what were your blasts when you were diagnosed last May? My dad was diagnosed around the same time but his counts were not as good as yours.

Maureen

[celebrations]

I thank you all for the encouragement, because when I am reading your posts, I tend to believe that MDS can be handled more as some chronical disease than as a fatal one. To have some examples in this forum who contradict most of the statistics makes me feel safer.

I have been dx not long ago (January 07) with MDS/RARS and a trisomy 8. My wbc and platelets are still quite normal, whereas my rbc are ca. 2,4-2,6 with my hgb being 9-10. Also for me the docs recommend the “watch&wait”. I am tired once in a while and short of breath whenever I climb stairs or hills. No, people wouldn’t believe, I was seriously ill. My children do not believe it either.

Some weeks ago I logged into this forum and I ordered some CDs 2002-2006 about MDS treatment and prognosis by the mds-foundation. I put them in my PC and after having listened, I was so frightened…I was under a tremendous stress and needed some days to reintegrate.

Your positive and optimistic views help me a lot, thus I am pretty aware of having a fatal disease with the only cure being a SCT.
Cele

[chuckk333]

Maureen,
My blast on diagnosis (5/06) and confirmed by a 2nd BMB (8/06) were:2%, no circulating blasts in the peripheral blood.

Chuck

[josey]

I am glad so many people responded to my post. I think when you are first diagnosed you feel like making out your will. Its good to know that in some cases you can still have a good QOL. I too carry hand sanitizer with me. My biggest worry is my platelet count which is running between 9 and 13. Bleeding out is pretty scary. I just have to adjust my life to compensate for the platelets. The doctors are hoping the Cyclosporine will bring those counts up. Its very encouraging to know that other people with this disease are also having a good QOL. Thanks for making my day better. Joanne

[Alice S]

Hi Joanne
Glad to hear that you are hanging in there. Just a little more encouragement for the day, my mom had a BMB and after two nerve wrecking days, because the nurse told her to ‘bring her husband’ along for the consultation, she got the results! AND AM I SMILING ALL THE WAY.

July 2006 she was up at 10% blasts, told to have chemo and transplant asap. We decided to wait and see. December 2006 she started EPO and in January 2007 she added Goji berry supplements and Co Q10. She had the EPO injections for 3 months and did not resume after the scare about EPO in the States.
Her current BMB showed that her blasts have gone down to 4%! Her white cells have been holding and slowly going up, now at 0.8 (December 0.36) and her platelets also holding steady in the 60’s. This change came about when she added the Goji berries and CoQ10 to the B6, B12, multivitamin cocktail that she takes daily. Her iron levels are normal despite more than 60 units of blood! in 27 months.
She has now resumed the EPO injections and will continue her cocktail, then have another BMB in six months.

But I feels as if I am floating on a cloud.

Does anyone know that this can happen? EPO was the first ‘medicine’ she has taken. She has had no medication or treatment for the blasts.

Take care Joanne and everyone else.
Alice

[Neil]

Hi Joanne,
Living with low platelets can be scary. Mine have been in the 10,000 range with a few dips down to 6,000. I do not have any outward symproms at these levels.
There are a couple factors you might find to be of help.
The equipment used to measure plts is accurate to +/- 15,000 0n counts between 50,000 and 500,000. When they get below 50,000 the accuracy is a bit fuzzy till you have quite a few CBCs to see where they actually seem to settle in.
On those days my plts dip to 7,000, they could actually be highter due to the equipment accuracy.
At one point they went to 3,000. My doc had a smear made and he manually counted them. He found they were closer to 10,000.
He also indicated there are cells present in ones tissues and in the lining of our blood vessels. When we get a CBC these cells are not counted since they arenot in the blood stream. If a doc prescribes a steroid such as prednisone these cells are released into the blood stream where they are then counted. The unknown factor is how long will these cells be present.
My BMB results indicated my platelets are larger than normal (but not considered to be classified as giant). This is an advantage. When a person has an injury the platelets break up and flow to the site of the injury. The bigger the platelets the more pieces they break up into and the count goes up.
There is also the quantity versus quality issue. Some patients bruise and bleed with counts as high as 75,000 while others at 10,000 do not present symptoms. In my case I have a line of megakaryocyes that are abnormal. They are producing a huge number of plts that are abnormal, are identified, killed off and flushed through the spleen in a normal process. At the same time there is a lesser number of normal megakaryocytes that are producing good quality platelets in small numbers that are apparently enough to handle my needs.
Hope this adds to your understanding of some platelet issues.

[jga_socal]

A young Indian gal who has bone sarcoma was in my chemo room tues when I got 2 new pints of blood. She swears that eating 1/4 of a fresh pomegranate daily boosted her plateletes to a safe level. we had a long talk. she has been totally into natural foods, teas, herbs, etc and her cancer scans are showing clear after 8 months of chemo and all the healthy foods.

[Author]

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