[Naomi]

Dear Gloria:
I hope that your trip to Hungary will help you with all of your grief. Remember the good times. My prayers are with you.
Naomi

[Naomi]

Ellie: I am so sorry to hear about Glen. You have both put up a good fight.
My prayers are with you and your family.
Naomi

[Naomi]

Hopefully you will be anew man when this is all over and you will be able that organ sound better than ever.
Naomi

[Naomi]

Hi Dennis:
You have such a great outlook on all you do and I am sure this outlook will get you through the transplant. Keep it up and if you are not able to, hopefully there is osmeone close that will help out when you need it.
Naomi

[Naomi]

Hi Susi:
Where in Ohio does your dad live? If it is in southern OH, maybe it would be closer for him to go to Pittsburgh (Center of Excellence)than to Columbus. I know that you live in Cols area.
I moved from there 6 years ago because I could not find a doc who really knew anything about MDS. I also have a son who lives in Dansville, NY and that also helped my decision to move here.
I hope all goes well for you and your dad. Just take it one day at a time.
Naomi

[Naomi]

Susi:
I was getting all of my meds through the VA…even exjade. I saw a PA twice a year and had all of my meds as needed. The VA tried to transfer me from aciphex to priolsec. I could not tolerate it and it did no good for me. I told my PA and she changed me back and noted that I could not take the priolsec. I had no trouble and all of my meds were brand names even if they had the generic name on them. I would just notify the VA pharmacy about two weeks before running out and the drugs were mailed to me. It was $8.00 for 30 days supply.
If you have any questions, feel free to ask me.
Naomi

[Naomi]

Terri:
I know what you are saying about different counts. This varies from hospital to hospital even. Even the paramiters vary between the two hospital I use.
Low at one is different from the other as well as high. My trial doc has the blood drawn at the local hosp and couriered up to his labs and the trial has the blood sent to their labs.
Sort of makes you wonder which one is correct.
Hope Bob gets his counts back where they should be livable.
Naomi

[Naomi]

Terri:
Wondered why I hadn’t seen you on the forum lately, so now I know. I am sorry about Bob’s problem and hope it all clears up shortly.
Take care
Naomi

[Naomi]

Marlene:
I go for phlebo every two weeks and have saline replace the fluid. I have not had any recovery time and I just continue on doing the things like always. It might be good to ask for the saline replacement. Had to have my gp write it down, as my hemo doc was the one who started it. The gp wasn’t going to do it until I asked for it. Phlebo brought my ferritin from 4800 to 1800 in just over a year. Have gone back to phlebo since going off exjade and doing very well. Going for another tomorrow.
Naomi

[Naomi]

Marlene:
Did John get any saline to replace the fluid after phlebos? I get it and that keeps me from having trouble after the phlebo. They take 400cc blood and add at least 250 of saline.
I have found phlebo much easier on my body than the exjade.
Good luck to John with the exjade
Naomi

[Naomi]

Britt:
Check with the Red Cross. They have all sort of implements that they loan to people. If they do not have one they may be able to point you in the right direction.
Naomi

[Naomi]

Hi Cheryl:
I started exjade and it increased the diarrhea to having to change clothes 3 or 4 times a day. I stopped it and have returned back to just the usual loose bowels with the revlimid. I took it Apr 5 to May 18. I think???it was also the cause of the c-diff that showed up. I had not had an antibotic since last March and had no other reason to have c-diff. Sometimes I think one medication reacts with others that you are taking. I have noted this on the diary that I have for the revlimid and hopefully the drug co will look into the possible reactions.
It did not effect my WBC, but my platelets have fallen to 68. Will see where they stand on the next CBC.
I have also gone back to phlebotomy to try to get the iron lower.
Naomi

[Naomi]

Hi Lori:
If your mom starts to take exjade for iron chelation, make sure she watches very closely. I have been on revlimid for 2 1/2 yrs. Last tx 12/03.
My ferritin was at 5,000. I was doing phlebotomy to lower it, but my port started acting up and would not give back, it was removed and I started exjade. It is the most horrible stuff I have ever taken and I shuddered every day before and after I took it. (mentioned this to the cancer center drug coordinator and she said that other people said the same thing) Within 20 minutes after taking it, it caused such diarrhea and it continued all day and night after that. I was changing clothes and bed sheets several times a day (too much laundery) as I had NO control over it. I also came up with a siege of c-diff that didn’t make it any better. Cleared up the c-diff and still have the diarrhea but can control it with loperamide so far.
I hope your mom has much better luck with the exzjade, but just watch her closely. As we all say, one drug effects different people different ways.
Good Luck
Naomi

[Naomi]

Chris:
Watch closley with the diarrhea. Mine has transformed into c-diff. I am on flagyl at present and I am still having a lot of diarrhea. It got real bad after I started the exjade. I will try to go back to phlebotomy as I am not on txs anymore.
Naomi

[Naomi]

Dennis:
I am in “remission” also. I am on revlimid and have been on it since 11/03. I have not had a tx since 12/08/03. I was getting them every 7 to 10 days before I started the revlimid. My white, red and platelets are all lower then normal, but fairly stable. My hbg and hct are both in the normal range. Was doing phlebotomy for iron overload, but my port sort of acted up. It was removed and I have started exjade. I shudder every time I take it. I do not like it, it tastes horrible and I will not ruin my oj with it. I have once again started phlebotomy through the arm.
I was just diagnosed with c-diff. Thought all the diarrhea was from adding the exjade, but found out differently. If it is not one thing it is another, so I just keep plugging along, living one day at a time, as it is about the only thing you can do with this dreaded disease
Naomi

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