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General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

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  #1  
Old Sun Nov 13, 2011, 09:52 PM
donna j. donna j. is offline
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Location: long island, new york
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pneumonia

after 2 weeks of postponing my 3 rd round of vidaza due to low counts, I had a fever last monday, put on cipro, and tested positive for pneumonia on Thursday. My platelets were 7 so I had to go get platelets on Friday. My scripts were changed to Amox and Levaquin and a anti fungal med was added.
My temps range from 98.5 in am to 99.5 in pm. It seems vidaza will push back again and now transplant will be postponed too. Has anyone experienced pneumonia? I am frightened but don't know if this is one of the ups and downs of MDS. I have spent so much time getting labs done, and pre transplant testing at the hospital and cancer center, I feel I picked up something there. I have been Howard Hughes like everywhere else.

Please let me know if you have had any similiar scares, and any suggestions.
I am not on any alternative meds as drs said no, but my normal diet of fruits,vegs, nuts, salads have changed with my low wh cells.
(I keep losing my posts, so pardon the mistakes)
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #2  
Old Mon Nov 14, 2011, 09:32 AM
cheri cheri is offline
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Yep, I just got out of the hospital with pneumonia....seems like it was an '"opportunistic" infection, as my white count had been very low for quite some time, and I had been running a fever for 2 months straight. It took a while for the pneumonia to present itself--in fact, at a Dr's visit the day before, my lungs sounded clear!
One thing I know for sure, that ups and downs are the constant in the disease! Just do the best you can as far as neutropenic precautions, and keep an eye on your temperature....and hang in there!
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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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  #3  
Old Mon Nov 14, 2011, 11:07 AM
donna j. donna j. is offline
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Thank you Cheri so much. I have a "community hemotologist who uncovered the MDS and provides the Vidaza, and a Transplant dr. at the hospital, but I don't have an MDS expert. I am wondering if I should. What do you think?

I so appreciate your posts!

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #4  
Old Mon Nov 14, 2011, 02:10 PM
DanL DanL is offline
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In August 2010 I had PCP, which required Bactrim and Fluconazole to get rid of as I had a Mold and Yeast infection. Same as Cheri, I had fevers for a couple of weeks, lungs were clear to the doctor, only signs were an elevated heart rate and increasing weakness, started sweating a lot.

I had to have a bronchoscopy to find the bugs causing the problem, but got better quickly.

MDS can allow opportunistic infections in that we might not otherwise experience, we just have to be ready for them as they come.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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  #5  
Old Mon Nov 14, 2011, 03:34 PM
Mary4Mike Mary4Mike is offline
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My husband experienced pneumonia 3 times, each time following a round of Dacogen. He nadirred hard and was hospitalized all three times because of high fever. It was awful to watch because he had "rigors" with it. I pray that you can stay strong, recover enough for transplant, and have a successful outcome!
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #6  
Old Mon Nov 14, 2011, 03:42 PM
donna j. donna j. is offline
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Thank you Mary. I appreciate this so much. When you say he "nadirred" hard, what do you mean? Sorry for all my ignorance. This is a new world to me. My family are not strong advocates, they sort of wait for me to explain things to them.... Mike is lucky to have you!
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #7  
Old Mon Nov 14, 2011, 03:46 PM
donna j. donna j. is offline
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Thank you Dan. It means so much to know others have been through this and its not all that unusual. My question to you is what is PCP (other than angel dust?) that you were treated for?

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #8  
Old Mon Nov 14, 2011, 05:01 PM
cheri cheri is offline
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LOL! "angel dust"....
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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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  #9  
Old Mon Nov 14, 2011, 09:43 PM
DanL DanL is offline
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Angel Dust - if only.

PCP is a farely rare form of Pneumonia known as Pneumocystis carinii pneumonia. It is most common in HIV/AIDS patients and immuno-compromised cancer patients. Mine arrived after being on prednisone and imuran, along with completing 8 cycles of treatment with rituxan, so I was pretty darned compromised.

For people that are not immuno-compromised, ironically, the illness frequently has very poor outcomes, but for those of us "lucky enough" to have good doctors watching over us becuase of MDS, it can be found, treated, and remedied pretty reiliably.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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  #10  
Old Tue Nov 15, 2011, 10:10 AM
Darice Darice is offline
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PCP

My hubby had PCP within a year of his stem cell transplant . . . as I understand it, that timing is not unusual. We were told it is a fungal form of pneumonia (which is usually viral or bacterial) and is opportunistic. Scared me to death.
The "nadir" is the low point in your blood counts while undergoing chemo. Most chemos have a predictable nadir point . . . their effects are well known enough that it can be predicted that someone will "nadir" . . . or "bottom out" at X number of days following administration of chemo.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].

Last edited by Darice : Tue Nov 15, 2011 at 10:16 AM. Reason: clarity
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  #11  
Old Thu Nov 17, 2011, 08:15 AM
Paula W. Paula W. is offline
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what a week!

Hi Everyone,

I haven't been on here in so long!! I came back on to see if anyone with MDS has had pneumonia, and found this conversation going on.

My mom has been fighting MDS for 3 years, she is turning 78 in a few weeks. Last week we thought she was fighting a stomach virus, then last Monday 11/7, she woke up with a 104 fever and when my father went to help her off the bed to go to ER she fell to the floor and couldn't move. We called the ambulance and rushed her to the ER, where they started to treat her for what they thought was a bad urinary tract infection, on Wednesday (two days later), they realized that her appendix ruptured, they wanted to do emergency surgery, but you can't do emergency surgery when someone doesn't have platelets or hemoglobin is 7.8. So they transfused her through the night and did surgery on Thursday. After surgery, she had rough days and good days, they finally did a chest xray and found pneumonia in her left lung. Yesterday they did another xray and found that it is now in the other lung. I wanted to know if anyone knows if this is something that she can recover from, being 78 years old and tired. I know I'm looking for the "sure, she'll recover" answer, but I'm trying to be positive and realistic at the same time. WBC 1.3, just transfused for blood and platelets.

PS. good to see you on here Cheri, hope you are doing well!! I think of you often!!

Paula
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  #12  
Old Thu Nov 17, 2011, 10:14 AM
cheri cheri is offline
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Hi Paula!
Thanks for the kind words....
Sorry you had a rough week.....but since your Mom made it thru the surgery, it seems she's pretty tough. Anesthesia affect the lungs?
She's in the hospital, getting the care she needs, and hopefully she'll rebound soon. The right meds always make a difference!
One thing I always feel is that it is really important to EAT, especially while you are trying to recover. And hospital food ain't all that. See if there is something Mom wants and get if for her. Sometimes all I wanted was chicken noodle soup, and couldn't get it. And vitamin water or things that will help her feel better.
Here's hoping this is just a minor setback and she feels better soon!
Take care!
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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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