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  #51  
Old Wed Sep 30, 2009, 07:34 PM
launch launch is offline
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Smile Lab Results for 1st Day of 7th Cycle Vidaza

Today was a good day... we asked a lot of questions about continuing on the clinical trial protocol (10-Days Vidaza) on a 28 Day Cycle. Ron is approved to remain on the trial, as his blood is considered in Full Remission and his Bone Marrow is considered in Partial Remission due to some blasts... but, when I asked about all of us having some blasts, the Doctor confirmed what Birgitta had shared in earlier posts.... that we all may have blast cells at some time...

I also asked if there were any "knowns" as to 10-Days being better than 5-Days, or 5-Days being just as good as 10-Days... The doctor did say, right now, it is "unknown".... and there were really no way to determine if 5-Days or 10-Days would be best.

Also, I did confirm Ron's dosage... I had noted previously it was 105mg. That is what he receives due to his body weight & Height, but, the actual prescribed dose 50mg/m2.

We've decided to continue with "The Winning Team" and stay on the clinical trial protocol with the 10-Days Vidaza. Ron's Labs looked great today!

7- 1: 9/30/09 HGB 15.5, HCT 44.6%, RBC 4.60, WBC 4.6, NEU 45%, PLT 204

Thank all of you for your continued support & prayers. And, may God Bless all of you !!!! Patients & Caretakers! Cindy

Last edited by launch : Wed Sep 30, 2009 at 10:14 PM. Reason: minor typos...
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  #52  
Old Thu Oct 1, 2009, 05:45 AM
Birgitta-A Birgitta-A is offline
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Vidaza 50 mg/m2

Hi Cindy,
It is really very interesting that Ron is getting less Vidaza each day than the recommended dose but during a longer period - 50 mg/m2 for 10 days compared to 75 mg/m2 during 5 or 7 days.

Perhaps many patients should do better with a lower dose during a longer period. You know patients with CML take Gleevec every day to keep the malignant cells down and control that their counts don't decrease too much.

Good luck with the treatment!
Kind regards
Birgitta-A
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  #53  
Old Wed Oct 7, 2009, 11:07 PM
launch launch is offline
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Lab Results for 10th day of 2nd Cycle Vidaza

Todays is Ron's Cycle 7, Day 8 of Vidaza. His Lab Results are incrediable! He's a bit tired during his chemo days, but, still is feeling good... He really feels good, a few days after his last day of chemo injections... his cardiologist put in back on Baby Aspirins (Coated) 81 mg. previous to MDS dx, he was taking 325mg of coated aspirin due to him taking Niaspan, which, causes him to "Flush"... While they've cut back the Niaspan from 200 mg per day to 1000mg per day, Ron stil has a flushing problem. They're trying him on the baby aspirin (81mg) to see if it helps. He's been on it now for 1 week. We'll keep a close eye on Platelets for effects.

7-8: 10/07/09 HGB 14.7, HCT 59.0%, RBC 4.30, WBC 5.6, NEU 54%, PLT 131

We continue to Praise God for Ron's success and progress!
Cindy
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  #54  
Old Sat Oct 17, 2009, 12:27 PM
launch launch is offline
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Smile Great Lab Results Continue...

Today I'm posting Ron's Lab results that were taken this past Wednesday (10/14/09), which was Cycle 7, Day 16. Again, we are pleased with his continued good blood counts on Vidaza...

7-16: 10/14/09 HGB 14.3, HCT 41.5%, RBC 4.20, WBC 5.2, NEU 52%, PLT 122

As mentioned in previous post, Ron began taking Baby Aspirins (Coated) 81 mg a week ago. He said something was making him feel weak and just kind of weird. He believed it was the aspirin. He has stopped taking it after only 5 days and he feels fine again.

PTL!
Cindy

Last edited by launch : Sat Oct 17, 2009 at 12:32 PM. Reason: clarifying date of labwork.
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  #55  
Old Sat Oct 17, 2009, 05:55 PM
Vera W Vera W is offline
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Ron's Progress

Hi Cindy, good job you guys!!! Doesn't asprin lower your counts? Looks like it did a bit. Take care
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #56  
Old Sat Oct 17, 2009, 08:04 PM
launch launch is offline
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Aspirin & Lowered Counts

Hi Vera,
Yes, aspirin can lower counts. Previous to dx, Ron was taking 325mg daily and was taken off of that. His counts were holding good, and they decided he could try the 81mg daily to help off-set the symptoms (Flushing) when taking his Niaspan at night, but, I see his PLT were lower this week too. So, it was probably a combination of the aspirin and the chemo injections knocking them down.

Thanks for your post. I Also want to congratulate you on your transplant success! You are such an inspiration to so many people!!! Thanks for sharing your journey! And, I will keep you in my prayers for your continued restoration of health!!!

Hugs, Cindy
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  #57  
Old Fri Nov 27, 2009, 12:33 AM
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Just an Update....

Hello Everyone. I've not posted since 10/17/09. Ron didn't feel as good on his 7th & 8th Cycle as he did during his previous cycles. He really felt run down, although his Blood Counts continued to look good.

Aside from Ron's MDS Condition, he developed an "Unrelated condition" that really put a damper on the past few weeks.... During Ron's 8th Cycle he had a problem with Burning senstation when he urinated and he had to go very frequently.

The medical staff has determined that his condition was "unrelated to Vidaza"..... but, of course, anytime your immunity system is lower than the average person, it much harder to fight any new development and/or condition....

Who knows, perhaps this condition, combined with his Vidaza injections is why he had a really "Run down feeling" these past several weeks...... That's what I have a tendency to believe...

Ron's family doctor put him on Flomax due to his history (2 yrs ago) having enlarged prostrate. He was also prescribed Pyridium for burning relief. This was on Friday (Day 3 of Cycle 8 Vidaza). It only got worse, and Ron then mentioned this to the on-scene doctor while getting his weekend Vidaza injections. That doctor believed it to be a Urinary Tract Infection (UTI). They collect Ron's urine for testing and he was told to start taking "Cipro" antibiotic. The Next day though, it was determined it was not a UTI & the Hemotologist told Ron he needed to see a Urologist ASAP. Luckily, Ron got a same day appt.

The Urologist prescribed Ron antibiotic Bactrim, and him to remain on Flomax, and to take Ibuprophin as needed to reduce inflammation. The urologist confirmed the prostrate was inflamed and told Ron he'd require antibiotics to treat bacterial prostrate prostitis.

On Thursday, (Day 8 of Cycle 8) Ron came down with a Fever, 101.9F during Vidaza injections and he felt really really bad. The Hemotologist recommended that Ron be admitted into the hospital and did not like that Ron was on Bactrim. He removed him from Bactrim, as it was NOT the antibiotic of choice for someone with MDS. AND, not to take Ibuprofin... (as it affects platelets).

The Hematologist recommended hospital admission and Ron agreed, as his fever continued to climb. That night, it shot all the way up to 104.4F. He was dilerious... and really doesn't remember anything about that night. He was in a lot of pain - lower back due to the prostrate inflammation, so they gave him pain killers and finally a one time administering of morphine. He was out like a light. They kept him on high-potency antibiotics by IV to try to help him break the fever....

The fever didn't let up until Saturday evening after Midnight... I had called my prayer warriers via email Saturday evening around 6pm when I came home to take care of my dog for a short... and take it to my friends house. Then, I was back at the hospital... and witnessed Ron's temperature fall below 100F just after midnight. It was awesome! They then changed his IV drugs and put him on Levaquin and continued to monitor temperature the next few days while inpatient. Finally, Ron was released on the following Tuesday... Let's just say, it was a Long Week!!! Ron was wiped out!

We had missed a planned trip while Ron was in the hospital, so, we re-scheduled for the following week. We were out of town for 4 days. We also had a planned trip this Saturday to travel to Cancun, MX, but, decided, it would be best not to leave country right now... just for safety sake... Ron is still on antibiotics and really can't afford to pick something else up right now... and if he did come down with a fever, he'd need to go right in the hospital to get it back under control until he "Kicks" this prostrate prostitis. The Urologist said it may take up to 30 days to fully fight this condition.

Ron still has a lot of burning and discomfort. He remains on Levaquin & Pyridium as needed. His hematologist checked his platelets and told him they were okay for Ron to take Ibuprophin for just 3-Days to try to get some relief with the inflammation.

Then, to come off of it. Meanwhile, when asking the Urologist again about the Flomax and purpose of taking it, the urologist said Ron should not be taking it now... with frequent urination... (Glad we Asked again)....

So, I'm sure you understand why I haven't posted the weekly Blood counts. we're headed out of town this Saturday for several days. I'll try to get the documents together & load up the counts for your review... as Ron continues on this clinical trial....

God Bless All of You!
Cindy
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  #58  
Old Fri Nov 27, 2009, 05:59 AM
Birgitta-A Birgitta-A is offline
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Infections

Hi Cindy,
Too bad with Ron's prostatitis! Infections are our most dangerous enemies. We never know when and how we will get attacked by different bacteria, virus or fungi. It is a problem when we need antibiotics and drugs for pain because they often give adverse effects like low platelets. Good that Ron is getting effective treatment !
Kind regards
Birgitta-A
So afraid of infections that I live like I have chronic neutropenia
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  #59  
Old Fri Nov 27, 2009, 12:18 PM
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drug interactions with MDS , AA

Hello Cindy,
Thanks so much for all your posts which help others out there that might have to take Vidaza in the future. I hope that your husband is continuing to recuperate from his infection. I am posting this just because your husband's experience with other specialists is very typical and all of us with bone marrow diseases and low counts, especially WBCs and platelets need to be wary when we are given a new drug by someone other than our hematologists. Often these other specialists may not even know what the diagnoses of MDS or AA mean and what the possible risks of other drugs may do to patient's blood counts or risks of bleeding and infection. I would recommend that patients always check with their hematologist before taking any new drug prescribed by another specialists to make sure that it will not possibly interfere with their counts. Of course there is always a risk/benefit assessment to make before using any drug or treatment. Sometimes the communication between different doctors taking care of the same patient is not always ideal and patients need to make sure that "they are all on one page."
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  #60  
Old Thu Dec 3, 2009, 07:53 PM
launch launch is offline
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Thank you...

Thank you for your post. We thought we were "Safe" because the Urologist worked in the same medical complex and our appt was set up by the Hematologist Nurse... but, like you said, they are not the MDS experts... and I agree, all needs to be run back through the Hematologist.

We've just returned from a 5-Day vacation in the Florida Keys. It was relaxing, but, it's always good to be back home. I'm just thankful that through all this, Ron & I were able to get-away for several days just to relax and re-group some... it's been a very trying year, but, Ron has responded well to Vidaza and we're thankful for his current progress....

Update: Ron still has discomfort with his Prostitis. We're not really happy with his current Urologist and fully intend on finding another one, starting tomorrow. He really wanted to see his current one, right before he left town to discuss his discomfort and lack of relief. The Doctor relayed through his Nurse, I won't see you because I don't know what to do for you....

Well.... "Ding, Ding, Ding... time for a new Urologist".... We've lost confidence in the previous one, so, we'll find another one... We don't expect a cure overnight, but, we need someone that's willing to work closely with Ron and try to help him get some relief. We've gone on-line to see other remedies, for example there is something called a "Sitz Bath".... and these are things Ron needed from his Doctor, to explain to help him get relief...

Okay, thanks for listening.....

PS. The Stone Claws Crabs were AWESOME!!! Ron doesn't eat Crab meat, but, he watched me eat my entire plate full! And the Key Lime Pie was Great!

Cindy
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  #61  
Old Fri Feb 12, 2010, 10:24 PM
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Hello!!!!

Hello Everyone. It's been several months since I've posted about my husbands journey on clincial trial e1905. I have so much to share! I wanted to let all of you know that Ron is doing very well and I will post his blood counts and give you a full detailed update on his progress with the next few days!!!! We received very good news from his most recent Bone Marrow Biopsy..... more to come..... Cindy
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  #62  
Old Sat Feb 13, 2010, 12:32 AM
Neil Cuadra Neil Cuadra is offline
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Cindy (and Ron),

We're looking forward to hearing your good news!
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  #63  
Old Mon Feb 15, 2010, 05:31 PM
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Talking e1905 Clinical Trial w/o MS-275 (Update on Ron's Condition)

Hello Everyone! As promised, I'm providing an update to Ron's ongoing progress while on e1905 Clinical Trial. (Because the first one was Too Long, I've broken it down into two separate Posts...)...

Remember, he is Not in the group that is receiving MS-275 pill.

I last posted 12/03/09 when Ron was having a tough time with a new condition, Prostatitis. We were not happy with his Urologist, and after 30 days of fiddling around with this doctor, we selected a new Urologist and could not be Happier!

Ron's new doctor was able to get Ron's condition under control within a week. Right now, Ron's about 80% better than he was. He continues to have ocassionaly burning after urination, but it's minimal.. as we continue on the treatment with this new Urologist. He and Ron's Hematologist/Oncologist are talking together, discussing the long term plan... The Urologist prescribed the following for Ron's Prostatitis: Levaquin 750mg daily, Q-UROL (Herbal Supplement w/Sawpalmetto), which is sort of like advadart, but, with less side effects. He takes this twice daily, and Celebrex for prostrate inflammation. The Ocologist concurs with this protocol, but, continues to monitor Urologists treatments/status.

Now, an update on Ron's Blood Progress: (I've put the clinical trial cycle number, following by the day of cycle). Ron is on 10-Days of Vidaza injection (low dose), followed by 18 Days off... totally, a 28-Day Cycle.


7Cy-22nd:10/21/09 HGB 14.3, HCT42%,RBC 4.16, WBC 4.2, NEU 37%, PLT136
8Cy-1st:10/28/09 HGB 14.8, HCT43.6%,RBC 4.30, WBC 3.2, NEU 37%, PLT212

8Cy-10th:11/04/09 HGB 14.8, HCT42.8%,RBC 4.24, WBC 3.5,NEU44%, PLT228
** Ron hospitalized on 11/05/09 due to high fever, attributed to Prostatitis.

8Cy-12th:11/06/09 HGB 12.9,HCT 36.8%, RBC 3.61, WBC 3.2, PLT158

8Cy-14th: 11/08/09 HGB 12.3, HCT 34.4%, RBC 3.38, WBC 3.2, PLT90

8Cy-15th: 11/09/09 HGB 12.9, HCT 36.2%, RBC 3.59, WBC 3.0, PLT90

8Cy-16th: 11/10/09 HGB 14.3,HCT40.6%,RBC 4.09, WBC 3.9, NEU57%,PLT107
** Ron released from hospital on 11/10/09.

8Cy-19th:11/13/09 HGB 13.7,HCT40.4%, RBC 3.96,WBC 5.0, NEU41%, PLT132
8Cy-22nd:11/18/09 HGB 13.8,HCT40.7%,RBC 3.93, WBC 3.6, NEU41%, PLT141
9th Cycle: 11/25/09 HGB 14.6,HCT42.9%,RBC4.12, WBC 3.1, NEU38%, PLT185
** Ronís treatment (Cycle #9) delay for 1 week (personal reasons, will check blood before leaving town. Will resume treatment on 12/09/09.

9th Cycle:11/27/09 HGB 13.7,HCT40.5%,RBC 3.88, WBC 4.7, NEU62%, PLT107
9Cy- 1st: 12/09/09 HGB 13.6,HCT40.5%,RBC 3.89, WBC 6.5, NEU 58%,PLT173
9Cy-10th:12/16/09 HGB 12.8,HCT38.8%,RBC 3.71, WBC 5.4, NEU61%, PLT122

9Cy-15th: 12/23/09 HGB 13.3, HCT38.5%,RBC 3.77,WBC 5.0,NEU58%, PLT102
9Cy-22nd:12/30/09 HGB 13.6, HCT39.9%, RBC 3.88, WBC 3.4,NEU 53%

10Cy-1st:1/06/10 HGB 13.6, HCT39.9%, RBC 3.87, WBC 3.6,NEU52 %, PLT180

10Cy-10th: 1/13/10 (Lab Work Not available for post)

10Cy-15th:1/20/10 HGB 13.7, HCT40.6%, RBC3.87,WBC 4.3,NEU48%, PLT 145
10Cy-22nd:1/27/10 HGB 13.7,HCT40.5%, RBC 3.88, WBC 4.7,NEU62%, PLT107

BMB (2/3/2010): Bone Marrow Biopsy- Treatment Delayed 1 week

Labs 2/3/10: HGB 13.6, HCT 39.7%, RBC 3.83, WBC 3.6, NEU 47%, PLT168

11Cy-1st: 2/10/10 HGB 14.0,HCT 41.7%, RBC 4.02, WBC 3.3, PLT219


Please see next post for updated status... Cindy
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  #64  
Old Mon Feb 15, 2010, 05:31 PM
launch launch is offline
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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
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  #65  
Old Tue Feb 16, 2010, 12:26 PM
Vera W Vera W is offline
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Hi Cindy, sorry that you two have had such a rough time of it, I was worried about you. If the revlind doesn't work could he go back to Vidaza? Stay Strong, Vera
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #66  
Old Tue Feb 16, 2010, 12:49 PM
launch launch is offline
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Revlimid, then back to Vidaza?

We asked the Doctor that and he said, if Ron starting taking Revlimid, then, his other aberations returned, then, yes, he could start taking Vidaza again... But, will it work the same... second time around? Know one Knows.

We're going to see Dr. Allan List at the Moffitt Cancer Center in Tampa, FL before we make any decisions. We continue to be thankful that Ron is responding well, to Vidaza.... Thanks for checking in! Cindy
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  #67  
Old Sat Mar 6, 2010, 11:25 PM
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Back from Moffitt Cancer Center...

Hello Everyone!

Ron & I just returned from Moffitt Cancer Center after a second opinion with Dr. Alan List. We were very impressed with Dr List and his staff and brought back some very valuable information. The first thing learned is, that, second opinions are paramount!!! While we're very happy with our Doctor at Winship Cancer Center, we were just at a point that we were very very confused and needed more information.... this trip to Tampa, FL gave us exactly what we needed.....

We met with Dr. List and he was very impressed with how well Ron (My husband) has responded to Vidaza (Low Dose) as part of this clinical trial. He said, if Ron changes protocol, his dose would increase, and he would probably not experience any more side effects, but, he recommends against ANY CHANGE to his current treatment... so as not to change the response....

I believe we asked Dr. List 6 different times, and in 6 different ways, if Ron could come off 10 Days of chemo per month and reduce to 7, 5, or 3 days... and he consistently said... "Don't change Anything"..... he said...
"Not to Rock the Boat"... if the body is responding so well to a protocol... why change what you're doing????

Also, we asked if Ron should change to Revlimid treatment vs Vidaza and was told no. REASON: While Ron use to have 6 aberations (Including -5q deletion), and since starting Vidaza, 5 of his Aberations have been eliminated, and he now only has the -5q deletion... normally treated with Revlimid... but, we were told that Revlimid will not "Fix" the -5q deletion, but, would help correct the associated anemia... so, with Ron not having anemia.. Dr. List has recommended against changing from Vidaza to Revlimid... but, the one thing they said to watch was... Ron's -5q deletion "Cells" have increased over the past year, while the other aberations have been eliminated.... we need to keep an eye on this. We pray the -5q deletion will eventually go away..... and Ron will be in total and complete remission next BMB.... (Please keep him in your Prayers)

So... what do we do now??? Ron was also told... just to live life... stay active, and enjoy everyday... that he is expected to be around for many years.... so, we are thankful for a great report and the affirmation of what we're doing.....

Latest Lab results: 3/03/10 HGB 13.9,HCT 39.9%, RBC 3.91, WBC 3.38, PLT98
So, thank all of you for your continued prayers! We praise God for Ron's progress and we thank God for his healing touch!

Hugs, Cindy

Last edited by launch : Sat Mar 6, 2010 at 11:36 PM. Reason: Added the Revlimid reference.
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  #68  
Old Thu May 13, 2010, 10:58 PM
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Red face Update on Ron. Clinical Trial e1905 w/o MS-275

I've not posted for sometime, so this note is long overdue. My husband, Ron, completed 13 Cycles of Vidaza by injection. He's on a 10-Day protocol, low dose Vidaza, followed by 18 Days off in between cycles. The past few cycles have seemed to really get Ron down some, although he refused to "Give in"... He's planted a small garden, he walks daily approx 2 miles, and he helps out alot around the house (i.e. laundry, etc).

Over the past 4-5 wks, we've noticed his WBCs haven't recovered like they once had been doing. Here's the counts from the past several weeks:

4/21/10: WBC 2.2
4/28/10: WBC 2.0
5/05/10: WBC 1.7
5/12/10: WBC 1.8

Seems once they started falling from 3.8, to 3.2, to 2.8, etc... they never recovered... we just kept watching them continue to fall. The neutraphils are at approx 36%, but, they did what they referred to as a Manual check on the WBCs, and they were below the required "500" count, so, for the first time, after completing 13 Cycles of Vidaza, Ron could not recieve his treatment as scheduled on 5/5/10. We were sent home and told to return in 1 wk, which, the WBCs were checked 5/12/10 with no improvement. The overall number was lower and Ron's Vidaza was once again delayed.

We go back on 5/19/10 to check again. If Ron's WBCs have recovered, then, he will continue on the clinical trial with a 20% dose reduction of Vidaza. If Ron's WBCs have not recovered, then, he will be disqualified from continuing on the clinical trial and will start a different protocol.

We're not sure what to think at this point. Of course we're very concerned, but, we have absolutely no control over the events in our lives right now... we just try to keep our spirits up & we're thankful that Ron's been transfusion free for more than a year now.... (Praise God!). We just try to enjoy every single day. We Thank God for Everday!

God Bless All of you!
Cindy

PS. I'll update all next week....
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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  #69  
Old Fri May 14, 2010, 12:51 PM
Birgitta-A Birgitta-A is offline
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Low WBCs

Hi Cindy,
Too bad that Ron's WBCs are decreasing! Can't he get Neupogen or a similar drug?

When his neutrophils are so low he should be very careful and avoid everything that eventually could cause infection. You know there are many sites about guidelines for neutropenic patients. We should for example not do anything like planting because we can inhale mold and get pneumonia.
kind regards
Birgitta-A
Neutropenic fever Sept 2007. Since then avoiding everything that could cause infections though my WBCs are normal due to 2 injections Neupogen/week.
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  #70  
Old Fri May 14, 2010, 05:14 PM
launch launch is offline
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Next Wednesday's Appt

Hi Birgitta,

Thanks for the info, I didn't even consider the garden could be a bad thing but, will let Ron know. And as far as receiving Neupogen, I will ask that question on Wednesday next week. (Ref: clinical trial rules, etc).

Right now, Ron is on Augmentin antibiotic, still fighting against his Prostatitis... which has recently flared up more than it had been the past few months. All could be part of low WBCs and increased infection, thus, inflammation, etc.

Also, I recently heard, from one of the Staff at Moffitt, that some Doctors, while not scientifically proven, believe sometimes Neupogen can result in increased Blasts? Have you heard anything like that?


Cindy
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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  #71  
Old Fri May 14, 2010, 07:15 PM
Chirley Chirley is offline
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Hi Cindy,

There seems to be differing opinions on whether Neupogen increases blasts. My doctor doesn't like to use it unless he absolutely has to. My neuts run at about 0.1 to 0.2 now and he still doesn't want me to have it. I just have to accept his judgement.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
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  #72  
Old Sat May 15, 2010, 09:04 AM
launch launch is offline
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thanks for the reply

Chirley,

Thanks for the reply - we'll keep that in mind too, if our Doctor is against it. My huband's WBCs were 0.7 in the very beginning and the shot was never suggested at that point, but, he was put on preventative antibiotics. Ron has also remained on Acyclavir the entire treatment time, to prevent against Shingles.

Cindy
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.

Last edited by launch : Sat May 15, 2010 at 09:06 AM. Reason: Added Chirleys name vs CME01 ;-)
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  #73  
Old Sat May 15, 2010, 02:18 PM
Birgitta-A Birgitta-A is offline
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Low white blood cells

Hi Cindy and Chirley,
As far as I understand Neupogen and similar drugs can increase the risk for AML in patients with immunosuppresive therapy for example for AA but not for MDS patients with drugs like Vidaza:
http://www.anemia.org/professionals/...onid=14&topic=

You know Chirley that your neutrophils are very well functioning - most MDS patients will get infections when they have so low neutrophils as you have. Remember that infections often are life threatening in MDS.

Ron is already having an infection - prostatitis - that is consuming WBCs. When they get low the prostatitis gets worse and the WBCs are decreasing. It is an evil circle.

Here is one of the many sites about neutropenia.
http://cancerinfo.cancer.iu.edu/canc...tropenia.php#6
Kind regards
Birgitta-A
2 injections Neupogen/week since neutropenic fever Sept 2007 with good effect on my WBCs but I am still vary careful because WBCs can't help me if I get virus or fungi. We all have virus and fungi (and bacteria) living for example in the mouth and they can harm us when we get neutropenic.
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  #74  
Old Sat May 15, 2010, 02:54 PM
helen c. helen c. is offline
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erlotinib clinical trial

is anyone on this trial and if so what are your results
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  #75  
Old Sun May 16, 2010, 02:19 PM
launch launch is offline
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Birgetta,
Thank you for the information, and explaination concerning Neupogen and increased blasts. We'll see what Wednesay's Lab work and appt brings.

Hugs, Cindy
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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