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#1
Fri Oct 21, 2011, 12:09 PM
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Revlimid, Danazol and Me!
Hi folks~
Just found out that I have been approved for Revlimid! Hooray! I hope to be one of the exceptions where it works without the 5q-....It would be so wonderful to be transfusion independent!!!!!!! I've been on Danazol (male hormone) for a week--no noticable side effects yet...it is supposed to boost platelets. Still running this crazy fever, and night sweats. It amazes me that the ONLY time I sweat is when I am asleep. For example, I can sit on the couch for 6 hours watching tv and not perspire a bit. Fall asleep, and I wake up soaking wet! Last week my white count was .1...  no where to go but up!I am on Bactrim 3xweek, and Valtrex daily--Exjade on hold for a month. Needing red blood more often lately.... Feeling tired but I think it's from the fever--it's like driving with your emergency brake on! The roller coaster continues! But I just celebrated my 2 year anniversay of being diagnosed with AML! For the first year, I was convinced I was a week away from death. Now, I feel that I live with a pesky disease, but my demise it not imminent! That's the latest! Hope everyone is having a good week!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly 
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#2
Fri Oct 21, 2011, 04:23 PM
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Cheri,
I love your attitude! Congratulations on being approved for the Revlimid. We'll hope and pray that it works and that the Danazol will boost your platelets. Good luck!
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#3
Fri Oct 21, 2011, 07:28 PM
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Hi Cheri
Glad to hear your news and that you are out of the hospital, and hope that the Revlimid treatments will be successful! You know, no matter our diagnosis, treatment, etc. every one I've spoke to or read about is DIFFERENT. The one common experience is the "roller coaster ride" and the roller coaster takes downward dips, but will just as fast swing upward!! The best of luck to you!
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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#4
Fri Oct 28, 2011, 03:29 PM
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the roller coaster continues....
Well before I can start the Revlimid, I will first need to get BACK out the of the hospital --scary high fevers developed into Pneumonia!!!!!!
Came on suddenly in the middle of the night--thought I coughed and pulled a muscle...later that day, I coughed up blood (SCARY) and here I am again, trying to get well enought to get my next treatment...... Hopefully, it is just a speedbump and nothing more....
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#5
Fri Oct 28, 2011, 04:35 PM
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Ugh, that is scary. Hope you're over the speedbumps and back on the highway soon! Take care of yourself. Sending lots of healing thoughts your way. Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#6
Fri Oct 28, 2011, 08:11 PM
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Cheri,
Sending healthy thoughts your way. Hang in there and God bless you. I am so sorry you are having to struggle with this.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#7
Sat Oct 29, 2011, 12:11 AM
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Prayers and hugs your way, Cheri
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#8
Sat Oct 29, 2011, 04:38 AM
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Pneumonia
Hi Cheri,
Too bad with pneumonia! At least the fever is explained and now you hopefully will get effective treatment. Perhaps they could start with Neupogen injections that should increase your WBCs. Good that Danazol not is causing any adverse effects. Hope your counts will increase! Kind regards Birgitta-A
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#9
Sat Oct 29, 2011, 07:25 AM
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Thanks for the prayers and good wishes...they help!
We decided to double the dose of Neupogen and try that for a while..The single doses did nothing...but clearly, this super low white count is not a good thing...and I will be oh, so grateful when this fever, and these night sweats go away!!!!!!!!!! I will be in here for the better part of the week, and hopefully walk out feeling good and FEVER FREE!!!!!!! 
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#10
Sun Oct 30, 2011, 11:11 AM
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Neupogen
Hi Cheri,
Sorry, I forgot that you already are getting Neupogen. Now we hope that the double dose will help. When I have got Neupogen daily because my WBCs have been very low (due to Ferriprox or Exjade or Thalidomide) I get joint pains after a few days - you seem to tolerate the drug very well. Hopefully they find antibiotics for the pneumonia! Kind regards Birgitta-A
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#11
Mon Oct 31, 2011, 11:01 AM
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I'm definitely feeling better....my white count is up to 1.4 today thanks to the Neupogen....so far, no real side effects....hopefully stays that way!
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#12
Mon Oct 31, 2011, 07:51 PM
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Yay! Thanks for the good news.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#13
Tue Nov 1, 2011, 05:04 PM
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Discharged today and grateful to be home and able to breathe in some fresh, Autumn air.....
Fevers are way down, and hopefully, this bugger is GONE!!!! The lure of my own bed is intoxicating! I am thankful for all of the good wishes and prayers from all....
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#14
Wed Nov 2, 2011, 04:42 AM
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That's such great news, Cheri.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#15
Wed Nov 30, 2011, 11:46 AM
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Hey all --I need your help!
At the risk of seeming totally uninformed ,(or incredibly forgetful) I have to ask about Revlimid....I'm still not clear on how it works...and how long it may take....I have tried to research on this site, but honestly, with my Hgb so low, I have had trouble concentrating.....if you can point me to some links, or just give me the short version, I would be very appreciative! Initially, I took 5 mg, Revlimid, every other day, for a week and my #'s plummeted. (hg 6.1!) Stopped Revlimid over the Thanksgiving holiday, as it would have been virtually impossible to get a transfusion if I needed it. (So, of course, I threw caution to the wind and went camping! But with my WBC under 1 (even with Neupogen daily) and low HGB, I wonder if I can even tolerate Revlimid at all. It just seemed like the next move...... It seems that the Danazol has had a positive effect on my platelets, without side effects of a beard or anything else noticable. I am still really fatigued, despite having a transfusion yesterday. I am on Exjade, Danazol, Vancomycin, Bactrim, Voriconazol, and finishing up another round of Levaquin. Night sweats are killer; temp is in normal ranges..... Your thoughts are welcomed! Thanks......
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#16
Wed Nov 30, 2011, 02:14 PM
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Revlimid
Hi Cheri,
Revlimid works in many different ways - most of them are probably not yet described. The drug has been shown to be an immunomodulator, affecting both cellular and humoral limbs of the immune system. It has also been shown to have anti-angiogenic properties (prevents growths of the small blood vessels). http://www.biomedcentral.com/content...-8722-2-36.pdf Here is a report from a study of transfusion-dependent individuals who had low- or intermediate-1-risk MDS but did not have the chromosome 5 abnormality. In the study, 214 individuals received 10 mg of oral lenalidomide daily or 10 mg on days 1 to 21 of a 28-day cycle. Of these people, 56 (26%) patients no longer needed blood transfusions after a median of 4.8 weeks of treatment. http://rarediseases.about.com/b/2008...s-patients.htm I have not found a study in high risk non 5q MDS patients like you. The adverse effects with low WBCs and platelets are supposed to decrease after the firsts cycles. Remember that many patients can have positive effects with much lower doses than generally prescribed. I am for example taking 4 50 mg caps Thalidomide/week instead of 7 as recommended due to low WBCs. Good that your platelets are holding !Kind regards Birgitta-A
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#17
Wed Nov 30, 2011, 07:57 PM
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As always, I can count on you, Birgitta, for the most concise information. And in such a speedy fashion!
Thanks so much...I will peruse it carefully. I really feel that I have dumbed down, being on so many meds. It's scary.
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#18
Fri Jan 6, 2012, 08:29 PM
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Update
Hi all
Well, I have been on Revlimid for several weeks now, and just got bumped up to taking 5 mg every day, instead of every other day. The expected platelet/WBC drop--went from 88k platelets to 36 today...steady decline over last few weeks. WBC @ .7 despite Neupogen 4xweek........hoping this levels off soon. Energy levels are really low.... Having some serious GI problems--wicked, cramping intestinal pains, so bad I couldn't leave the house yesterday. Wonder if it's from the Exjade, or just a combination of all of the meds I have been on and my flora is destroyed. Will meet with GI Dr, but can't get in for 2 weeks......digestive tract is just a mess...trying to eat light, but no rhyme or reason as to what produces gas on any given day. I have a couple of these strange flat, bright red oval sore looking things on my legs--about 1/4 x 1/2 in long...doesn't bleed or hurt--fades after a few days...any clue, anyone? (looks kinda like a cigarette burn!) I'm in that "one day at a time" phase right now....any input you may have is welcome!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#19
Fri Jan 6, 2012, 08:52 PM
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Hi Cheri, sorry to hear you are not well.
That stomach problem sounds very much like what happened to me when I was on Exjade. It turns out that not only did I have GI problems but I had pancreatitis as well. My doctor said he hadn't heard of this as a side effect from Exjade but I think the proof is, that when I stopped the Exjade my pancreatic enzymes returned to normal. It seems wrong for you to have to wait 2 weeks to see the GI doctor. Can't your Haematologist contact them and ask for an urgent appointment? That's what my doctor did and I was seen the same day. I hope you start feeling better soon. Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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#20
Fri Jan 6, 2012, 10:45 PM
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Hi Cheri, I have no ideas about the leg sores or gi issues but wanted you to know I'm sorry you're feeling so poorly and and am sending you healing thoughts.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#21
Fri Jan 6, 2012, 10:52 PM
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Hey Cheri!
Yuck! I hate GI problems. I'm not smart about what the problem might be, but sounds like, based on Chirley's experience, the Exjade could be the ticket. I wonder if it might make sense to take a brief vacation from it and see if the symptoms clear up? Take care! Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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#22
Sat Jan 7, 2012, 04:10 PM
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Revlimid
Hi Cheri,
Perhaps you should have continued to take Revlimid 5 mg every other day - your WBCs are very low and we know that you can get pneumonia or other infections. The platelets can decrease fast too. Skin symptoms are common when you take Revlimid http://www.emedicinehealth.com/drug-...article_em.htm. If you have had the skin symptoms before Revlimid it must be something else eventually an allergic reaction. When you feel very ill you should really not take Exjade like Greg wrote. Iron overload is not as dangerous as infections or bleeding so the counts are much more important for us. Hope your GI symptoms will decrease with the light food! Kind regards Birgitta-A
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#23
Sat Jan 7, 2012, 06:17 PM
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Exjade side effects...
Over the last three years I've been on Exjade and have from time-to-time stopped using it to reduce GI problems. I agree with other folks here that you should suspend Exjade for some relief. Keep track of your serum ferritin and when it begins increasing, you may be better suited to restart.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30% ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#24
Mon Jan 9, 2012, 10:41 AM
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Agreed about the exjade. It irritates my stomach and also gives me a rash. The rash is itchy and annoying and responds to nothing. Right now I am using coconut oil and scratching.
Good luck Cheri, sorry you feel so bad and hope you feel better soon. Deb
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#25
Mon Jan 9, 2012, 05:13 PM
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Hi all
Stopped taking the Exjade! Thanks for all your input...Doctor agrees! Still having cramps and messed up GI tract, but used someone's clout to get GI doc to see me tomorrow! I've lost weight because I can't really eat much. Hope there is quick fix to this! I love food! And have to eat with all of the meds I am taking..... I'll let you know what transpires after tomorrow's appointment.......
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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