View Single Post
  #64  
Old Mon Feb 15, 2010, 05:31 PM
launch launch is offline
Member
 
Join Date: Mar 2009
Posts: 193
2nd Post - due to length... (BMB Results & how Ron's Feeling)

Ron's feeling a bit Run down about Day 5 of his cycle of Vidaza, and feels really run down until 3 days following his last injection. So, of his 28-Day cycle, Ron feels bad Day 5-13. During Cycle 10, we had visitors from Brazil, and the husband that was visiting us developed a cold while he was here, and the baby immediately developed one too.... needless to say, we couldn't stay away from them, they were visiting us... but, looking back, Ron should have wore his mask, or they should have worn one. First, they thought it was just the dry air from the trip, etc.... but, who knows..... They stayed 10 Days, and the day before they left, Ron's throat started getting scratchy, and after they left, he got really sick... Some fever, for 2 nts, between 100-101.9F. Ron developed a full blown sinus infection, and due to the fact he was already on Levaquin, it was determined to change his antibiotic to Augmentin.

You see, the chosen antibiotic had to meet the Urologists needs and also be okay by the Hematologist. Ron was prescribed 500mg Augmentin twice daily. A week later, it was not better, so when Ron saw his family doctor, the Augmentin strength was increased to fight the sinus infection... Ron was told it should have been a stronger dose to start with... So, it was raised to 875mg twice daily. He's doing great now, and he's over the sinus infection, so, I called the Family doctor today to inquire "When he could come off the high dose of Augmentin"... and was told, he should have come off it after 1 week.... REMEMBER... ALWAYS be pro-active on your treatment..... Ron's follow-up was not until the first week of March, had we not asked, then, he would have continued the higher dose of Augmentin for no reason.... This evening, I'll email Ron's Urologist, because, I suspect, he'll want Ron back on the Levaquin 750mg once per day.

NOTE: Normally, a Urologist would put a patient on Bactrim, but, this antibiotic is not the choice for patients being treated for MDS... So, levaquin was the antibiotic decided on... And, with chronic prostatitis, long term antibiotic is often the treatment protocol. We really Love the Urologist that Ron has now! He really shows interest and he "Cares about Patients".. plus, he knows you have to treat each and every person according to their condition... No one person is the same... and therefor, no treatment protocol is the same. He's also very responsive to "Email" contact, so, that makes it very nice for us....

And, the FINAL news... (Sorry this is so Very lengthy)... I should have posted more sooner.... Ron had a Bone Marrow Biopsy (BMB) Feb 3rd and the results are Awesome! Previously, Ron had 6 aberations of DNA abnormalities.... the results now show his only aberation is -5q deletion. He's been offered the opportunity to come off the clinical trial (e1905), if desired, and take Revlimid by pill form.

Decisions - Decisions? Well, as I've previously posted, Ron and I are very concerned about changing anything that works.... "Quitting the Winning Team"... the downside is, Ron's starting to feel really really run down during his 10-Day cycle of receiving Vidaza injections. About 6 wks ago, we decided, we wanted to travel to Moffitt Cancer Center in Tampa, FL to visit with Dr. List to discuss other protocols. We've discussed this desire with our Emory Doctor, and he knows Dr. Lists very well and encourages us to seek additional information. He will work together with Dr. List and collaborate on Ron's treatment... as we will decide if we change up, or stay with what Ron's currently on.

Our appointment is Mar 3rd, and all of Ron's records (including BMB slides) have already been forwarded to Moffitt to review prior to our appointment. Amazingly, Dr. List is the "Expert" on the -5q deletion and the drug Revlimid...

And, we have been praying all along for "Guidance" and "Signs"... we just take one day at a time... but, right now, we're feeling pretty good about Ron's progress and we Praise God every single day! We also look to the future, as the Sun continues to Shine.....

We continue to pray for all of you, patients and caregivers alike!
Next time, I'll try not to wait so long to post.... so, you don't have to read a Novel! Thanks for your support! I appreciate this forum more than any of you even know!

Hugs, Cindy

Last edited by launch : Mon Feb 15, 2010 at 11:35 PM. Reason: typo
Reply With Quote