Does anyone have open skin?

FloridaLady

Ok...I was bad enough actually see your cancer.  Now I can smell it and see a lot more of it.  Does anyone have open skin on chestwall. I have a large place on my mast scar and now on my shoulder. How do you address this?  I will see my onc. this week.  I'm hoping he has some idea on how to control the yuck on my chest wall. I'm doing low dose chemo because of my neuropathy but...I think I will be back on the hard stuff after he see what happened in two weeks.

Flalady

cp418

I am so sorry to hear you are going through this difficulty.  I know you do tons of research too.  Have you found anything for wound treatment?  I recall reading somewhere about those pure Oxygen chambers for healing wounds on diabetic patients and others.  Is this a possible consideration?

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2206003

ibcspouse

Flalady,

Sorry to hear.  Wish there was some wisdom I could give you, but the truth is I always seek out your post because of the knowledge and experience you have.  You seem to be having or have had the treatments that my wife gets.  The TAC, Avastin, Gemzar and Carpo.  Now Cam is on Ixempra and Xeloda, this has cleared up her skin mets and rash better than anything else.  I assume because of your bad experience at MDA with the trial, that Xeloda will not work well with your neuropathy, but I can't remember if you have had Ixempra.  It is a shame that with your research and the ahead of the curve Onc you have, that your experience at MDA limits your treatment. 

I have wondered if because of your experience there, if it changed some of their policy about clinical trials.  When Cam first saw Dr C at MDA, we asked about trials.  Thought she would be idea candidate, Very Local Advanced IBC, both breast, rash all across top of chest wall, and around to back, and above collar bone, axillary both sides, and superclavicle.  This with never being treated before for cancer, and having three years of MRI's every three to six months.  Dr C almost got mad at me.  He told me he would treat her with all the tools they know, as aggresively as he can, trials are not considered at that time.  After 9 months, he is still trying to get to complete response before surgury.  Last scan did have zero uptake in all nodes, and ovary, near full response in right breast and serious reduction in left breast tumor.  This was 8 weeks ago, will have new scans next Tuesday.  We are hoping, both breast now look normal, all rash is gone.

All the reading I have done on open sores, seems to be mixed.  Several seem to have luck with siverdene{sp} and aloe. 

Again best of luck, and thank you for sharing your knowledge. 

FloridaLady

Thank you both for your heart felt input.  cp418 I am also seeing a natural doctor and he mentioned oxygen therapy too.  I forgot all about it.  Kind of funny isn't all the research I do and I can remember to apply it to myself. I will check to see what I can find out. I'm sure insurance will not pay for it.  I can't imagine what the cost most be....

ibcspouse - I so glad you wife is having a good response with her treatment.  I hope the last few beastly cells die soon.  Please if she does surgery don't let them do radiation.  There is a high chance of recurrences and chemo does not get into the chest wall very good after rads.  Damage blood supply and tissue makes it hard to travel back into this area.  They will give you the old rads will kill the cells.  I have one rad side and one that is not.  The side with rads is much worst than the other side.  Just something to consider.  I have a feeling my doctor may want to use Xeloda with Avastin as chemo of choice.  I don't know how I feel about that.  Xeloda is not all the great for triple negs. I know Ixempra has a big problem with neuropathy.  I did read this week about silver and aloe to treat chest wall sores.  My natural doctor wants me to take it internally???  I'll see on the onc. say tomorrow.  I have a feeling not much of anything positive.

I just don't know what to do.  I feel like it is getting away from me big time right now.  I have it on both chest walls but, the right side is trying to open all the way up from shoulder to scar.  November is my three year mark of dx & tx. I spoke to my boss this week that I would try and make to year end to close out this year. (I'm the office mgr/bookkeeper) but, for some reason all he said is "We will wait until than and see what happens".  I don't think in understands just because I worked full time through out my treatment that I would have to some point take time off to take care of my health.  I have to tell you...some day I glad to go to work and forget about cancer.  Plus there is the whole money thing...

Thanks again. I will let you know what I find out. I still don't understand how I can feel this good and be this sick...

Flalady

TenderIsOurMight

Dearest Flalady,

 

I am so sad to read what this nasty cancer is trying to do. I know how hard you have worked to keep it controlled. I wish I had some known aides, and yes the hyperbaric oxygen comes to mind. And chemo. I do recall that a year ago there was a thread (I always get the term confused, post, thread, category?) on open skin. It had MUCH information on it. I think it was in the recurrence category.

 

As to your boss, true, he probably doesn't fully understand what is transpiring. So, just take it one day at a time and don't worry yourself about it. You'll know when to stop work, and knowing how resourceful hear you are, I can imagine too you've been similarly resourceful for him. He'll understand.

 

I'm glad you'll see your oncologist soon. He can help take some of the weight of decisions from your heavy shoulders. I think of you daily, Flalady.

 

((Gentle Hugs))

Tender 

TenderIsOurMight

Here is a good discussion of how one couple dealt with open wounds:

""My wife's open wound requires daily care.   I have also been trained by a wound care nurse and take care of the dressings daily.   Because my wife skin is sensitive to tape, we use a mepitel mesh and a duoderm covering.  We also put on a Aquacel AG fiber in under the mepitel for drainage and bacterial control.  To clean the wound we treat it with Aquafor.   The Aquacel is not absobent enough so we so use absorbent pads at key drainage areas.   She is also on antibiotics frequently due to fevers. ..."

 

Sorry about the post being so light in color. Can not seem to fix. 

FloridaLady

Saw my oncologist Thursday and he gave me four options on treatment.  He chose these because of my neuropathy and he is also trying to hold other chemo's for later if and when I get bone/organ mets.  He thinks my tumor has moved into my muscle around my shoulder blade.  This explains the pain in this area.  I did chose Ixempra because other are having response, but I only want it as low dose treatment.  He agreed that the new finding say to use it weekly not once every three weeks.  He did discuss that my chest wall it becoming very hard to penetrate (it solid now) and that makes it hard for the chemo to get into the site.  I will continue to look on the alternative side to see if there is away to get this to open up.  I did check into hyperbaric but most centers in my area will not do cancer patients because of liability. This is where they force oxygen into the body.  I also wanted this to see if we could heal the open wounds.  (they have very good results with wounds.) He did say he would send me to a wound specialist later after giving the chemo chance to work in this area. So...I got Ixempra Friday and I have a little fatigue but that was the only side effect so far...Please pray for my hands and feet.

Flalady

TenderIsOurMight

Thanks for the update, Flalady. I am glad to hear that you'll agree to try the Ixempra at a lower dose. Sounds reasonable, and should go lighter on your neuropathy.

 

I know you've been having a particularly hard time of late. I am sorry I didn't realize the degree of pain you were in, but i saw you mention it on another post. Are you taking anything for it?

 

I hope you won't hold back in letting us know your problems. Some people don't like to be viewed as complaining, but here at bc.org, we're beyond that into true caring and listening.

 

I will keep you close in my thoughts all this week and beyond, and if you don't post, I'll draw you out in some way. We're watching your back, Flalady.

 

((Gentle but sincere hug))

Tender 

riverinerabbit

Dear Flalady, I don't usually go onto this thread, but something drew me to it and your postings. Your strength is amazing and I am so sorry you are having such a tough time with your wounds.

I had an accident last year, caught in a rock fall and had my legs trapped for  a few hours. My left leg was badly laccerated by the time the emergency team freed me. Luckily my legs weren't broken, Just a hairline fracture in the one. The point of this all is, it was touch and go for skin grafts, but I preservered with the help of a plastic surgeon who had my dressings changed everyday and he used an amazing ointment that smelt of tar. towards the end I used a silver nano wound dressing. I can find out the name if you would like. The legs healed but left a wonderful war scar.

 I wish for your pain to subside and your wounds to be healed.

X  

riverinerabbit

Dear Flalady, I don't usually go onto this thread, but something drew me to it and your postings. Your strength is amazing and I am so sorry you are having such a tough time with your wounds.

I had an accident last year, caught in a rock fall and had my legs trapped for  a few hours. My left leg was badly laccerated by the time the emergency team freed me. Luckily my legs weren't broken, Just a hairline fracture in the one. The point of this all is, it was touch and go for skin grafts, but I preservered with the help of a plastic surgeon who had my dressings changed everyday and he used an amazing ointment that smelt of tar. towards the end I used a silver nano wound dressing. I can find out the name if you would like. The legs healed but left a wonderful war scar.

 I wish for your pain to subside and your wounds to be healed.

X  

TenderIsOurMight

I see you posting on other's threads and wish to join River and others in wishing you well. You are always thought of, Flalady, a mentor to many including myself. 

 

Please feel our prayers of strength for you winging their way to Florida. May the Fall sun warm you from inside out, and it's rays make the days brighter.

 

With best wishes,

Tender 

FloridaLady

Thank you both lovely ladies.

Riverinerabbit,

I have read about silver base treatments for wounds.  Please tell me more about the products they treated you with.  War wounds....aren't we all collecting to many of those?

Flalady