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

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  #1  
Old Mon Sep 19, 2011, 02:05 PM
donna j. donna j. is offline
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Question hemorrhoids

I was diagnosed in July 2011 and am on 17th day after starting 7 days of Vidaza and having serious constipation to point tears, causing me to remain home on these days. Am currently taking colace 100mg, 2 twice a day and either lactulose 1 T. 2x aday or Miralax 2x a day. Am also on anti-bacteria diet (no uncooked fruits//vegs). Resulting in protracted hemorrhoids and frequent urination (from the pressure?).

Does anyone have any suggestions?

I am due to start 2nd round of Vidaza on 9/26/11. Am registered with MUD and have had 3 transfusions - 2 for red cells and 2 for platelets since 8/29/11. Latest CBC (9/13/11) wh 1.6,Hemo 9, plate 35.
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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 Sep 19, 2011, 02:12 PM
Sally C Sally C is offline
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Hey Donna,
So sorry about your problem - as if you need that on top of everything else. My mother swore by prunes - or if you can't eat those - prune juice. She thought it cured just about everything. Also I think it's pretty nutritious as well.
I hope this sets you free.
Take care,
Sally
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  #3  
Old Mon Sep 19, 2011, 04:27 PM
donna j. donna j. is offline
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thanks Sally. Unfortunately I drink prune juice daily as my morning wake up juice. I'll continue to pursue regularity.
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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 Sep 19, 2011, 08:39 PM
Al's Wife Al's Wife is offline
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Usually the Miralax works wonders and it's not habit forming like other medicines, so I'm surprised it hasn't worked for you. Hope you can find something that will help with this discomfort. A Sitz bath will help ease the hemorrhoids.
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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  #5  
Old Tue Sep 20, 2011, 05:33 PM
mausmish mausmish is offline
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I've had 19 cycles od Vidaza, and constipation and hemorrhoids are a constant battle. Miralax did nothing for me. I have it mostly under control by taking colasce twice a day, fiber-con 3-4 times a day, and prune juice before I go to bed. The addition of the fiber-con is what helped the most. I also take senicot a couple of times a week before bedtime. Drink lots and lots of water. Sometimes at the end of my treatment week, I have to use a Fleet saline enema. If you take zofran (ondansetron) for nausea, take as little as you can get by with - it is very constipating, too. I usually take only one 4 mg. dose an hour before my treatment. Hope this helps! Good luck.
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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  
Old Tue Sep 20, 2011, 08:12 PM
donna j. donna j. is offline
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constipation and Vidaza and Zofran

thanks! I was thinking something like fibercon might also help. I will add that to my growing list. I deal with nausea by trying to get past it on the mornings between my chemo as I am afraid of the constipating results of zofran. I will try 4mg next week when I start again.

I have a couple of lumps under my skin from my first bout 3 weeks ago. Will they eventually disappear?
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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 Wed Sep 21, 2011, 01:00 AM
mausmish mausmish is offline
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I get the lumps at injection sites sometimes and they do eventually go away.
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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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  #8  
Old Wed Sep 21, 2011, 11:35 AM
cheri cheri is offline
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I feel your pain...

Hi Donna....
You just brought back some frightening memories!
I had some severe bouts of constipation on the Vidaza/Zofran combo---the worst is when things start and then stop midway. The pressure can be almost unbearable. Once I thought I would have to go to the ER.....I caution about too much "artificial" fiber at once, because that can be bad as well. Fiber from foods, like stewed prunes, oranges, brown rice and cooked veggies are all good, as they container moisture as well. Drinking lots of water is really important and a also stool softener. Miralax is good to take every day, like 1 tsp, for maintenance all month long.
Try not to sit and strain and if you have to get up, and move around, lay down, and most of all breathe and try to relax! Good luck!
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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 Sun Apr 28, 2013, 11:11 AM
Grifmat Grifmat is offline
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Help With Hemmorhoids!

My mom has internal and external hemmorhoids. She did have a colonoscopy a few weeks ago and they found a vein causing some burgandy blood in her stool. They were able to fix it. She has had some light spotting from the hemmorhoids but now she has some bright red blood in her stool and on the toilet paper. It's very little and she says it's just a smear. We called the GI doctor and she said it was nothing to worry about. She is so worried. She is very depressed and thinks it's something that is going to send her to the ER and be the end of her. I have tried to reassure her that it's just her hemmorhoids and that her doctor(the specialist from Yale) and the GI doctor both told her it was nothing to be concerned about and that it was normal considering her situation. Can anybody here relate or give me some advice to share with my mom to help reassure her?
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  #10  
Old Sun Apr 28, 2013, 02:37 PM
triumphe64 triumphe64 is offline
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I got mine fixed. It was easy.
I had to convince the doctor that I didn't make blood and any loss caused me to take more meds etc. I considered it part of my treatment.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #11  
Old Sun Apr 28, 2013, 02:44 PM
Birgitta-A Birgitta-A is offline
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Hemorrhoids

Hi Grifmat,
You know depressed persons very often worry about things that really not are so important - it is a symptom of the depression. I don't remember if your mother takes medicin for her depression.

It is difficult to tell depressed persons that they don't have to worry about the issue that for the moment is in their thoughts.

In any case you can tell her that it is almost normal for women who have had children to have hemorrhoids and that they often bleed a little. She should trust the doctors when they say that it isn't dangerous.

As long as she is depressed she will continue to worry too much about her symptoms and that is bad for her immune system - don't tell her that but try to get treatment for the depression. I read that one of the common antidepressants could have a positive impact on MDS.
Kind regards
Birgitta-A
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  #12  
Old Sun Apr 28, 2013, 05:35 PM
Grifmat Grifmat is offline
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She was never depressed before this. Her whole personality has changed since being diagnosed with AA. She tended to be a bit worrisome but not to this extent. She is afraid to go anywhere and she doesn't take her walks any more like she used to. It's not because she doesn't feel good either. She feels great. She seems to be more relaxed when she is in the ER. She spent most of the day today in the ER. They said it was her hemmorhoids. We asked the doctor if they could do something to fix them but they say they can't because of her condition. I try not to tell her that the stress will have a negative affect but I do tell her she needs to be more positive. She is now refractory to the platelets. They are still giving her regular platelets though until the HLA plt come in. Eventhough she is refractory her counts were at 14 on Mon. 11 on Thursday and 13 today! I know that is not good but it sounds great to us. The last few weeks they were always at 9 or 7. I just hate seeing her rush to the ER every time she has a very tiny nosebleed, or her hemmorhoids bleed a tiny bit. And when I say tiny...I mean a pin prick on the tissue. Thank you for all the feedback. It really helps....so much.
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  #13  
Old Mon Apr 29, 2013, 07:47 AM
Cheryl C Cheryl C is offline
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Does your mum take probiotics? They usually help with constipation.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #14  
Old Mon Apr 29, 2013, 09:34 AM
Grifmat Grifmat is offline
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That's just it. She isn't dealing with constipation. She has absolutely no problem going to the bathroom. She actually has no problems at all ...except her immune system is attacking her platelets in the bone marrow. Other wise she is fabulouse. The only bleeding she has is very minor. Her hemmorhoids were a problem for her before she was dx and now, eventhough her doctors have told her it's nothing to be concerned about, she rushes to the ER when she has the smallest amount of blood on the toilet paper. The problem is the ER keeps her for days and they run tests and they always want to do a colonoscopy..eventhough she has already had one and they found nothing. I guess my question is has anyone else experienced bleeding with hemmorhoids and was it considered anything to be concerned about? And has anyone else felt the need to run to the ER all the time? Is this normal after first being dx? I'm concerned for her and her quality of life. Yesterday was a beautiful day and she spent the whole day in the ER because she found a small amount of blood on the toilet paper. To put this in perspective...when she showed me how much blood...we are talking a pin prick...maybe a smear at times. Less than I get from a mosquito bite. I don't want to sound flip by any means. I understand the full extent of the seriousness of her condition. I'm only concerned about her state of mind and her need to run to the ER.
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  #15  
Old Mon Apr 29, 2013, 03:05 PM
Birgitta-A Birgitta-A is offline
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Crisis reaction

Hi Grifmat,
You know when your mother has such a severe crisis reaction with depression and very high anxiety level she should have professional help. Don't they offer psychological support in the clinic where she now is treated?
http://www.cancer.gov/cancertopics/p...ession/Patient

I googled antidepressants and sedative drugs but couldn't find any drug without low platelets as a very uncommon adverse event.

Hope your mother will start to feel calmer!
Kind regards
Birgitta-A
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  #16  
Old Mon Apr 29, 2013, 03:41 PM
Grifmat Grifmat is offline
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I don't know if they do or not. I think they do at Yale but I haven't been able to find anyone. I do think it's a great idea that she sees someone to talk about how to handle these situations. Someone who understands these kinds of issues. I have talked to her about making an appt. It's one of the reasons I started coming here. It's such a wonderful place to find support and I do believe that my ability to give some answers and understanding about the disease has helped both my mom and dad immensely. I do think that she needs some more professional and objective help that I am not qualified to give. Thank you for link. I will defiately check it out. You are always such a wealth of information.
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  #17  
Old Mon Apr 29, 2013, 10:00 PM
Hopeful Hopeful is offline
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Hi Grifmat,

I think doctors tend to be less worried about bright red blood but more concerned about dark tarry stools or a coffee ground appearance, as that is what signals bleeding farther up the GI track.

Be aware of the risk of infection with ER visits! There are a lot of very sick people that pass through the doors and the less your mom is exposed to all that the better.

I think you mentioned that your mom was very active before her diagnosis. You may want to strongly encourage her (with her doctor's blessing) to get into a walking routine again. I know it did wonders for my sanity!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #18  
Old Tue Apr 30, 2013, 07:51 AM
Grifmat Grifmat is offline
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Thank you Hopeful. You took the words right out of my mouth...now if we could just convince my mom and dad. My mom is actually calmer, more relaxed and in a better mood when she is in the ER. She is a nervouse wreck when she is home. I have tried to drive home the point that being in the ER is like being in a germ factory and that walking would be very theraputic for her. ( the doctors have told her there were no restrictions). The doctors and myself have tried to tell her that the very small amount of blood she is seeing is bright red and is coming from the hemmorhoids and it is nothing to be concerned about. She is constantly checking her nose, her gums and the toilet paper/toilet. I can definately understand her fears but she is doing well and she feels good. Hopefully with time she will learn to maneuver this disease and her quality of life will improve.
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