New to the forum — our story

[Mary4Mike]

Maureen,

Sorry about the mixup with the names (Jack/Joseph). My head is in a lot of places these days.

I found the mouth rinse bottle. It is a comopound RX and reads take one teaspoonful, swish and spit four times a day.

Compound: QTY 240
Dexamethasone .5mg/ml E 40.00
Nystatin 100,000 U/ml susp 60.00
Amoxicillin susp 125/5 60.00
Diphenhydramine Elixir 40.00
Lidocaine 2% Viscous soln 40.00

I hope this is helpful. Also, when Mike suffered from fever when he was in a nadir from chemo, we found that ibuprophen worked better when he was also experiencing rigors and chills with the fever. In the hospital they alternated Tylenol and ibuprophen. He experienced severe right side pain and a CT showed a large mass on his liver. When they had him ready to biopsy his liver, they could no longer find the mass. This disease is so multi faceted. Every story is different.

It sounds like you are educating yourself so that you can ask the proper questions when you have your doctor appointments. That is VERY important. We have found that the doctors appreciate knowledgeable patients and spouses. That has been our experience and we have seen several doctors for this over the years.

Sadly, there isn’t one answer for all.

Keep writing.

Mary

[gini]

Bear with me as I am new to this forum but glad to have found it at last. My husband is 71 years old and was diagnosed in July/09 with MDS stage 1 intermediate . Up til now he has had 13 transfusions and started with Eprex injections in August/09 but we are losing hope that this drug is going to help. Our specialist says we should give it 6 mths to see if it will encourage the marrow to produce red blood cells but at first it spread transfusion time from 12 to 14 days apart to 21 to 29 days apart. This month he is back at 13 days apart with a low hemoglobin count of 74 and now an iron overload of 2000. Like to hear from someone who has had Eprex and how successful if at all it was?

[gini]

Originally Posted By: gini

Bear with me as I am new to this forum but glad to have found it at last. My husband is 71 years old and was diagnosed in July/09 with MDS stage 1 intermediate . Up til now he has had 13 transfusions and started with Eprex injections in August/09 but we are losing hope that this drug is going to help. Our specialist says we should give it 6 mths to see if it will encourage the marrow to produce red blood cells but at first it spread transfusion time from 12 to 14 days apart to 21 to 29 days apart. This month he is back at 13 days apart with a low hemoglobin count of 74 and now an iron overload of 2000. Like to hear from someone who has had Eprex and how successful if at all it was?

[jimkufis]

Hello Gini, Jim Kufis here. I have had MDS for 2 to 3 years and have not used Eprex. From a quick review of this drug it appears to be similar to Procrit. Both drugs provide erythropoietin (EPO) to the bone marrow to enhance red blood cell production. Typically, this drug is not effective if ones kidneys are already producing enough erythropoietin. If the kidneys are not producing enough EPO Eprex may help. A better drug is Aranesp as it has a half life of 49 hours vs. 6 hours for Eprex. The cost of Aranesp is approximately 10X of Eprex. Aranesp can also be used with Neulasta which may make the Aranesp more effective. These drugs do not work for everyone and its best to consult with your Hematologist on these matters.

I have tryed Aranesp and Nuelasta for 6 months and had some positive response from this therapy but not enough. I was receiving 2 units of packed red blood cell(PRC) transfusions every 4 weeks. This caused Iron over load (Ferritin level of 2800) and I started taking Exjade (1500mg/day) as chelation therapy to remove the iron. This drug was very effect for me and I am now off of Exjade. My hemoglobin veried from 6.5g/dL to 9.0g/dL. The higher level was after recieving 2 units for PRC.

I have stopped the Aranesp and Neulasta and now take 5mg/day of Revlimid. This is working as my hemoglobin is now above 11g/dL. This drug is only successful 25% of the time with patients that have chromosome mutations other than 5q-. I have a chromosome 3 mutation. Living with MDS is a challenge and you need to be proactive and do research on MDS and become more knowledgeable in this disease to better understand your hematologist.

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