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SagePatientAdvocates
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Topic: bed/pressure sores - leg edema Posted: May 22 2011 at 11:23pm |
Dear Deborah,
you may have missed this thread-
all the best,
Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Debris
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Location: Forsyth,Georgia
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Posted: May 22 2011 at 11:10pm |
Eileen, how are you doing? Hoping this is a good week for you.
Deborah
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4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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123Donna
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Location: St. Louis, MO
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Posted: May 19 2011 at 11:01pm |
Eileen,
I don't know if this will help, but can they bring in an air mattress to place over your bed? When my grandmother was under hospice care at the nursing home they brought in a special bed for her. It was like an air bed that they placed over the mattress and it helped relieve the pressure sores she was developing. If you're getting home health care, they should know about situations like these and have some suggestions to help you.
I'm so sorry you're going through this and hope you get some relief soon.
Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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mjhoover@gmail.com
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Posted: May 19 2011 at 10:18pm |
Eileen, I am a bit drugged from pain meds so I hope I make sense. I am sor sorry you are having such a hard time with the pressure sores! Be sure to get home health right away so they can evaluate and treat you at home. There is a whole protocol they use to treat pressure sores. Be sure when you are in bed that you change positions at least every couple hours and do not lay on your back(you most likely cannot anyway at this point). There are nurses that can come in and help you with what you need to do. Once you are up and around it will be easier for it to heal. Wound care is also a very good idea. They are experts at healing this kind of thing. You want to be sure you are working with folks that TREAT this kind of thing. It is a specialty just like any other specialty. Good luck and take good care! MJ
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7/08 IDC L Br, mast 1/16 node +,St 2 gr 3, 6 rounds TAC
7/10 Mets to lungs, nodes abdomen BRCA-
8/10-1-11Abraxane/Avastin
7 11 3.3 cm tobrain sstem/rt cerribellium WBR 15 rds
Poss trial at MDA after
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trip2
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Posted: May 18 2011 at 1:41am |
Eileen how awful you are dealing with so much! Would it help to increase the lasix dosage I wonder? When I was dx with CHF we had to work with my dosage, increase it a bit so that it would work better. Big hug, I can only get in here on occasion for some reason not sure if this will go thru, missing all of you.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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zacar
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Posted: May 17 2011 at 11:51pm |
Hi Eileen,
I'm sorry you are having such a difficult time. I am sending you lots of healing light and love. I hope things get better very soon! You deserve a break!
Love,
Caryn
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DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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dmwolf
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Posted: May 17 2011 at 12:21pm |
Eileen, sweetie, I hope the wound heals soon and the swelling subsides. You must feel like Job. How are you today? Have you been able to do some walking? Hang in there.
Love, d
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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suec
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Posted: May 16 2011 at 5:53pm |
lyphodema is a twist i foolishly didn't expect but caught at early stage and the massage and wrap have been medicare covered and now am ready for compression sleeve ...no pain, just big investment of time. good luck getting coverage so this new issue can become one of the lesser problems
suec
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tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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TNBC_in_NS
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Posted: May 16 2011 at 2:51pm |
Dear Eileen:
You certainly are having a hard time! Ouchie on all parts.
1. Your behind needs to be tended to immediately. Pressure sores are so hard to heal when they continually have pressure on them. Get yourself a sheep skin for laying on. They are at the pharmacy or call the Cancer Society to let them know you need one. The Occupational Therapists have them as well. Have the nurse who is doing home care put a request into the physician for wound care immediately.
2. Lymphedema is brutal. God love ya. If you have coverage try to get a massage therapist that specializes in Lymphatic Drainage. . If you do not have coverage tell the Cancer Society you require this too. It is very important for your well being. There are registered massage therapists who will come to the home and while you are still not very mobile, please get someone in.....
3. Walk and move your legs as often as possible. I know you are tired but the more you are off of the pressure sore the better and your being mobile will enhance the drainage with the Lasix. Watch for your potassium while on Lasix it depletes it.
Get some cans of soup and use them in each hand to move up and down to keep the movement going in all your joints and muscles. If you can, get a cane as a support and walk as much as possible. You will find you can do this easier once your pressure sore is healing... Make sure your pressure sore is clean and free from fuzzies from our special blankets, put a clean gauze dressing on and rotate from side to side every twenty minutes and do not stay on your back for too long.
There are gel seats for wheelchairs that you can use in a regular chair if you can sit.
I am not a physician but have worked in this area for many years with physicians and therapists and have seen results of their treatments, they work darlin!
Take care and let us know what we can do for you. Hugs, from Nova Scotia Helen
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Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Lillie
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Posted: May 16 2011 at 2:14pm |
Hello Eileen,
My goodness, you have a "boat load" of problems here, all at once. I am so sorry.
I agree with Barbi that you should consult someone in the medical field about the pressure sore.
I will say that my mother (when she was living) had a bed sore in about the same proximity as you describe yours. She was in a nursing home for about 5 weeks after a debilitating stroke from which she did not recover. I was told by her physician to keep zinc oxide on the area of the pressure sore at all times. Also, we had to keep her turned often so she would not be putting pressure on any one area for an extended period of time. Once this process was started the sore did not get any worse.
Hopefully, since you are able to move about some on your own, it will keep the pressure sore from getting any worse. Hopefully, it will begin to reverse itself. You will have to be diligent in caring for the pressure sore.
I will keep you in my prayers that your edema, pressure sores, and other health issues begin to improve.
God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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EileenF
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Posted: May 16 2011 at 10:50am |
Thanks Steve and Barbi,
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7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;
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Barbi
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Posted: May 16 2011 at 9:21am |
Eileen: The nurse is about to come out (with a disclaimer that cancer was never my specialty). Sounds like you are doing the right thing for your legs - elevate the legs about your hips several times a day, take your lasix, walk and move to avoid blood clots and build your strength. Did you get the pressure sore while in the hospital? If you are on home health, make sure you show this to the nurse as they will get the order to treat or have a wound care nurse assess and direct treatment. If you are not, call you doctor and find out what treatment they want. It will depend on the stage of the ulcer (just red, just the top of the skin open, open to muscle, etc). Make sure you are not lying flat on your back but alternate just slightly (or alot, your comfort) from side to side every couple of hours to keep pressure off of it. Those sores come from pressure restricting blood flow to that area. Hope I haven't just given you a bunch of info you already have. If so, please forgive. Those sores can get nasty really quickly and are hard to heal. Oh, and get lots of protein and fluid! Barbi
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SagePatientAdvocates
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Posted: May 16 2011 at 1:07am |
Dear Eileen,
I am so saddened to read this. You have enough grief without this on top of it. I am hopeful some folks will respond and in the meantime, I sent you an email with some thoughts...
prayers continue,
Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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EileenF
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Posted: May 15 2011 at 11:08pm |
Hi All
After 1 week of hospital bed and 1 week home too week to move I have an ugly bed/pressure sore on my lower back/butt plus lower leg edema = swollen weepy feet and ankles I am taking lasix to try and help with the edema but it is slow going. I also have left arm and shoulder lymphedema I am working with a physical therapist to reduce, but it is hampered by IBC inflamed lymph nodes and of course the tnbc chest wall, breasr and lung tumors
So 3 weeks later in addition to my chemo side effects I am trying to conquer these issues -has anyone dealt with pressure sores or lower leg edema and have some tips to share? I am alternating keeping the legs up, exercising them and walking for 3 minutes at time to build strength up I don't know which is best
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7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;
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