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MDS Myelodysplastic syndromes

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  #1  
Old Thu Dec 8, 2011, 04:01 PM
MASamaha MASamaha is offline
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Chest Pressure w/MDS and Vidaza

My husband has recently been diagnosed with MDS and has gone through his first round of Vidaza which he completed on November 23rd, has transfusion's done weekly (prior to his last transfusion yesterday his WBC was 1, RBC 2.72 and HGB 7.8). I am still new to all of this terminology and disease and unfortunately his current local oncologist we are not that comfortable with, he is not very open to asking questions and I am in the process of trying to convince my husband to change doctors. His does have an oncologist at the Cleveland Clinic (apx 50 miles away)that he does like but has his weekly CBC's, transfusions and Vidaza are done with his local doctor. After all of this my question or concern is...he has been experiencing the typical shortness of breath but also has some chest pressure that comes and goes. At his last CBC he did mention the chest pressure to the nurse who told him not to mess around with chest pressure and the next time it happens to go to the ER BUT after she mentioned it to his doctor the doctor said it was probably due to the low HGB count. The doctor did not actually come out to speak with us just gave this info to the nurse to relay to us. Now that the nurse has said what she did it has him (and me)totally worried about a heart attack or stroke. Does anyone have any experience with chest pressure, is it common with MDS or even possibly a side effect of the Vidaza? Prior to the MDS my husband has generally been a healthy 62 year old, exercised,watched his weight and did not have any prior heart issues. Any information would be helpful. Thank you all.
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Old Thu Dec 8, 2011, 05:03 PM
Marlene Marlene is offline
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He may not tolerate having his HGB at 7.8. That is low. Does he feel better when it's higher like at 9?

Most people have a red cell transfusion threshold when the HGB is 8. But some, especially men, have a higher one and need to get red cells sooner so they set their transfusion threshold when the HGB is 9.

The other thing to check is that his calcium, magnesium, potassium and sodium are OK. And that he's well hydrated.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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Old Thu Dec 8, 2011, 05:12 PM
bebop bebop is offline
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my Dads dr always asked about chest pains and I think pressure would also come under this. I would do as the nurse said and take him to the er immediately.
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  #4  
Old Thu Dec 8, 2011, 05:16 PM
donna j. donna j. is offline
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I too get the chest pressure. I have just completed 3 rounds of vidaza, have MDS, and have been receiving transfusions for blood and platelets. From what I have read, I chalk it up to my red blood cells being low. But for me it becomes very hard to discern whether the symptoms are from the disease or the treatments. The chest pressure is sometimes there, and sometimes not. I do not fare well at all from the Vidaza, and it takes a toll on me mentally and physically. Perhaps it is keeping progression of the disease at bay, though, that is the dr.s belief until transplant time.
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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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Old Thu Dec 8, 2011, 05:53 PM
Marlene Marlene is offline
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One other thing came to mind.....Is he getting lasix (a diuretic) when he gets his transfusions. Some centers give a diuretic to the older folks because the fluids they are getting is too much for them. If so, it may deplete his potassium which can effect the heart.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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Old Thu Dec 8, 2011, 10:13 PM
riccd2001 riccd2001 is offline
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Part of my treatment during PRBC transfusions includes 20cc for two units or 40cc of Lasix for three units. Yesterday I received two units, one of them being 361ml.

Furosemide (aka Lasix) is a potent diuretic (water pill) that is used to eliminate water and salt from the body.
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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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  #7  
Old Thu Dec 8, 2011, 11:27 PM
Greg H Greg H is offline
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It's best not to med around with chest pain. I'd get him a work-up with a cardiologist just to make sure nothing's going on.

That said, I'm 55, with no heart problems. And I definitely have weird heart feelings when my HGB is low. For me, the trouble starts mostly only if I get under 7.5. Sometimes my chest feels full. Other times I awake from sleep to find my heart racing. If the HGB gets into the sixes, my heart can start flopping around like a catfish in the bottom of an aluminum boat on a hot Summer day.

I may eventually ask my doc to up my transfusion threshold from 8.0 to 8.5 or 9.0, just to prevent this kind of stuff.

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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  #8  
Old Fri Dec 9, 2011, 12:13 AM
tytd tytd is offline
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Chest pressure

I agree wholeheartedly with Greg. Certainly the low hemoglobin could be exacerbating some underlying coronary artery disease or angina. I would have him checked out by his primary care MD or cardiologist or ask your oncologist about a referral. Better to be safe than sorry although his MDS may preclude some of the routine treatments for coronary artery disease. Good Luck
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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  #9  
Old Fri Dec 9, 2011, 10:34 AM
Dick S Dick S is offline
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I was having some minor upper chest pain from time to time, usually when HGB is low. Wondered why.
I had never heard about this chest "pressure" and angina from low HGB before, so I looked it up and did some research on it and sure enough low HGB can cause some disconfort there.
For me, I know it's not my heart 'cause I have it checked out regularly because of previous stents implanted and I am on daily doses of Isosorbide Dinitrate for heart angina.
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Last edited by Dick S : Mon Dec 12, 2011 at 10:44 AM.
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  #10  
Old Sun Dec 11, 2011, 03:56 PM
annmonster annmonster is offline
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I think that your gut level instinct is right ....... change Dr.s !!! Sounds like yours is not very responsive to patient's needs/questions . Are there no other alternatives in your area ???
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  #11  
Old Tue Dec 13, 2011, 02:34 AM
cathybee1 cathybee1 is offline
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If you haven't done so already, please set up an appointment with a cardiologist. My husband also experienced chest pressure, as well as pounding in his ears, and chest and leg pain on exertion. The symptoms were worse when his Hgb was low. Our hematologist attributed the pain and pressure to low Hgb, and suggested Bruce get transfused more frequently, to relieve the symptoms.

Bruce did find relief immediately after transfusion so waited for months to contact a cardiologist. But once the cardiologist was informed, he scheduled Bruce for an angiogram within a few days. There was indeed a blockage, a stent was placed, and since then, there has been no more pain or pressure.

There has definitely been an improvement in Bruce's quality of life. And luckily, the blockage was discovered before there was damage to Bruce's heart. If there is any downside, it is that Bruce must be on Plavix and has to rely on bloodwork and not pain to let him know when it's transfusion time.
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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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