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MDS Myelodysplastic syndromes

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  #1  
Old Tue Sep 25, 2012, 06:55 PM
estelle estelle is offline
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Father has very low WBC and neutrophil ,is there anyway to increase WBC? Urgent

Father is at high risk now. During the fight against the infection in lung, father's blood cells all dropped. He received platelete transfusion so the cough bleeding stopped. But don't know how long it would last? The even worse thing is his white blood cell and neutrophil dropped dramatically,which put him life-threatened. His WBC is 0.48 10E9/L, neutrophil is 24.9% and neutrophil absolute is 0.12 10E9/L, doctor said WBC can't be transufed, it can only be generated by himself? So is there any way to increase WBC? The doctor said my father has too low WBC to have fever? Is that true? I am thinking these low blood counts doesn't demonstrate the bone marrow ability of generating blood cells. these low blood counts partly are caused by the treatment . Is it possilbe his bone marrow could be generating more white blood?
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  #2  
Old Tue Sep 25, 2012, 07:39 PM
Neil Cuadra Neil Cuadra is offline
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estelle,

The doctor may decide to give your father something called G-CSF, which stands for granulocyte colony-stimulating factor. A common G-CSF is filgrastim, sold in the U.S. under the trade name Neupogen. It's injected.

There are other drugs that work similarly to boost your body's own white cell production.
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  #3  
Old Wed Sep 26, 2012, 07:59 AM
Marlene Marlene is offline
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Estelle,

When John was in the hospital he had no WBC and spiked really high fevers. I asked how he can run a fever without white cells and the doctor said it wasn't unusual for that to happen. So yes, you can have fevers even when your white count is that low.

The other thing to keep in mind is even though the blood does not show a white count, it doesn't mean his body is not making them. The little he is making, is not staying the blood. Instead, it's moving on to the site or sites of the infection and not showing up when they do the CBC. But it's clear, he's not making enough. Like Neil stated, a growth factor could help this.

Lastly, white cell transfusions are done but very rarely. They did transfuse white cells (just neutrophils if I remember correctly) for John but it was difficult. It took two days to set it up and then they had to stop on the third day due to side effects. We were fortunate in that our hospital had it's own blood donor service and had a dedicated team managing all of John's blood products.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #4  
Old Wed Sep 26, 2012, 12:12 PM
knstone knstone is offline
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Low neutrophil counts

Hi Estelle,
I've had a very low ANC recently, .05 (or 50 depending on the scale). My doctor uses Neupogen to stimulate WBC production. After 3 injections at 480mgc over 11 days my ANC rose to .40 (400), much better. Many MDS doctors do not give Neupogen to patients, they seem to feel the white blood cells produced are not really good. It's interesting that they may give them if you are in the hospital with a fever of unknown origin, I've had 2 hospital bouts with a fever that were diagnosed as mild pneumonia in one lung.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #5  
Old Wed Sep 26, 2012, 12:35 PM
knstone knstone is offline
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More from Kirby

Sorry, I hit post too soon.
While in the hospital I had Neupogen shots daily, after several days the WBC and ANC would rise; and the fever would go away. Also had round the clock antibiotics thru an IV.

Neutropenic fever seems to be common with MDS/AML patients.
This video describes neutropenic fevers:
http://www.youtube.com/watch?v=IApJsoi3bXI
I hope it will open for you, you may need to paste it into your browser.

I've lived with the ANC generally below .50 (500) since 2009, my wife and I are OCD about cleanliness. I never touch door knobs, faucet handles, etc., when we are out, use a paper towel or napkin. Avoid anyone coughing, wear a mask in the doctors office (it seems to scare others away from you which is good, they think you are sick-HA). Never shake hands with anyone.

Hope this may help.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #6  
Old Mon Oct 26, 2015, 11:11 AM
alyasa alyasa is offline
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Indian alternatives to assist with neutropaenia

My dad also suffers with low WBCs, and as a family we have had to help in small ways.

One of the ways is adding a lot more tumeric (haldi) into food as it has well known antimicrobial (bacteria and fungi) properties. Around the garden at home we apply neem instead of pesticides (which were advised were not safe for someone compromised with MDS), which is also a good fungicide. It can be taken orally too.

However, unlike tumeric (which can be taken with hot water and honey), neem is bitter. We hope and pray that a fine pinch here or there helps my father.

Dad also regularly takes a gulp of honey - that historically has been known to be antibacterial and antifungal. Although some professionals have advised us against honey when under severe neutropaenia.

Please check with your own professionals about using alternatives as we would not like to cause difficulty to anyone. These are cheap and simple alternatives that can be used but are also very mild and take time to use.

A friend of mine explained that using diverse "products" is a good way to help someone with neutropaenia.

We hope and pray for good health for all.
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
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  #7  
Old Fri Nov 13, 2015, 07:02 PM
Faye R Faye R is offline
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Smile Indian alternatives to assist with neutropaenia

Is the turmeric that you use raw or in powder form I have been told to boil the powdered turmeric'
DX Rcmd now Raeb -2
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  #8  
Old Sat Nov 14, 2015, 11:09 PM
Cheryl C Cheryl C is offline
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You could also try taking Echinacea to increase neutrophils and lymphocytes. It's available in capsules, liquid and possibly other forms as well. If you Google "Echinacea for white blood cells" you will find useful information on this.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #9  
Old Mon Nov 16, 2015, 02:43 AM
alyasa alyasa is offline
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Tumeric as antimicrobial

We use tumeric boiled in milk (with honey added to sweeten after) or as a spice in food. I know people who also take it raw (i.e. normal dried form. It also helps stop bleeding and is good for cuts (but this we use for the kids and not for dad - but it is worthwhile remembering if there are low platelets - like nasturtium leaves, they help with clotting - but PLEASE check with your medical professional about these alternatives first).

A good combination (if you are not vegetarian) is boiling up some beef marrow bones. Add a little water, garlic, ginger, salt, and some tumeric to taste, and eating the "stew".

But we also just sprinkle it on dad's food.

The data on tumeric is quite impressive.

And buying tumeric from different sources is what we also do - we do not use the same batch all the time. It is important to keep a range of diverse products/actions for neutropaenia (based on my reading) because of negative selection. That is, the bugs not killed by what you use, tend to get stronger. So diversity, which is natures check on errant mutations of all sorts, helps by reducing negative selection.

When dad is out of the room, we also put up a range of antibacterial oils. We add it to the water and let it waft in the room. We have been advised that doing it while he is in the room allows bugs to travel in the moisture generated, and that is not good. I cannot recall now, but we took the list of scents to use from new research on aromatherapy oils being used in Intensive Care Wards to eliminate superbugs (and here they also use a diverse range of scents, at least so far). Off hand, we use clary sage, lavendar, geranium (but be careful in summer as the bees love this), sandalwood (australis as the other is too pricey), pine, mint, eucalyptus, tea tree and lemon grass.

But please CHECK with your own medical practitioners as each patient is different.
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)

Last edited by alyasa : Mon Nov 16, 2015 at 02:56 AM.
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  #10  
Old Mon Nov 16, 2015, 02:45 AM
alyasa alyasa is offline
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Use of echinacea

Cheryl C
Is Echinacea a good product to use for someone with MDS? I read some of the literature (which I did not quite understand) about how it stimulates immuno-responses and was concerned about the effect it would have on the type (gene sequenced) of MDS genes that are silenced.
Would be much obliged.

Apologies for the delayed response.

Riaz
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
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  #11  
Old Tue Nov 17, 2015, 12:09 AM
Cheryl C Cheryl C is offline
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Hi Alyasa - All I can say is that I haven't read anything to indicate that Echinacea could have a negative effect in MDS. I do know it could be risky for asthmatics.

Echinacea was actually recommended to me by the haematologist who did my most recent BMBs. He said that Chinese medicines were often unsafe and to take 1000 mg Echinacea daily to boost my white cell count and my immune system. I actually don't do that as I don't like to be taking any one supplement for any length of time. I just take it when I feel a sore throat or have other cold or flu symptoms.

Natural, unheated honey is good. Use medical grade honey if you can afford it. I use "Medihoney" (Manuka honey) when I have a sore throat or mouth ulcers. I also use it as an immune booster from time to time. It's also good for people on chemo or suffering from gut GVHD. See http://www.express.co.uk/life-style/...-survive-chemo

With regard to conventional medicine, the haematologists I've consulted with have been wary of prescribing Neupogen because of the possibility of it increasing blast cells.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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