Treating Painful Skin Sores from IBC

Lindaura1

I just posted this on the Triple Negative Forum, before I found this one:

it is my sister who is suffering from Triple Negative Inflammatory Breast Cancer of her right breast.

She has only just begun treatment with Taxotere and Carboplatin last week.

She keeps a dressing over the sores on her breast and wears a bra, but the pain in her breast and the horrid appearance of the sores is really bringing her down.

Naturally, we are hoping that the Chemo will soon take effect and the sores will dry up and heal, but does anyone have any other temporary treatment ideas to help her?

Also, she lives in Marina Del Rey, California. Can you recommend a Cancer Charity that might have some kind of support, helpline, home visitor, etc, that she could turn to?

She has a husband taking care of her and a loving brother nearby, as well as good neighbors, but I live in England, where home support is available from a variety of sources. Even if there was a nurse to make home visits to check on her sores and change her dressing..,

Thanks in advance,

Laura

sbelizabeth

Her oncologist can arrange for visiting nurse services. They're not free of charge, but if you sister has insurance it should cover it.

LoriCA

My ulceration was extensive - it kept growing right before our eyes before I started chemo - and extremely painful (I wasn't able to wear a bra for many months, just soft loose t-shirts) so I had a wound care specialist on my team. If her MO isn't addressing the wound, she might want to consider consulting a wound care specialist. Mine was treated with Silvasorb (requires prescription) after daily cleaning with a saline spray, and prior to that silver rope wound dressing was used. I did it myself at home, didn't want to have someone come to the house every day just to change my dressing. I suggest keeping the dressing a little loose, once I started chemo the wound seemed to heal/dry much faster when it got some air. I put tape only on two sides of the dressing so air could circulate but wound was still protected and kept clean.

I was given opioid pain meds, but I also had some other issues that caused extreme pain (the tumor got in the brachial nerves, bone mets, etc.) so that may not be standard procedure. If she's having severe pain she should talk to her doctor about it. You can't focus on healing when all you're thinking about is the pain.

There's no help for the horror of it except maybe an anti-depressant med if needed. Actually seeing the cancer destroy my body was the most emotionally difficult thing I've ever gone through (and I've been through a lot). I wouldn't even let my husband see it because it was so horrible. Thankfully my oncologist took a well-rounded approach and addressed all of my needs, physically and emotionally, to get me through it. A big gentle hug for your sister and I hope the chemo starts healing it soon. Once she starts to visually see that the chemo is working it will do wonders for her emotionally. Not that any of this is easy, but just seeing the wound start to heal was better than any anti-depressant drug.

Lindaura1

Dear Lori,

Thank you so much for this comprehensive reply. I sent it to my sister, who immediately felt extremely sympathetic to your experience and now feels better about herself.

She is just heading into the second week after her first round of Chemo and her spirits are improved. Eating is still a problem, as she is experiencing that tastebud effect, going all awry, but her husband is trying hard to make passable dishes and it seems to be working.

Again, I just want to give you all our thanks and wish you all the luck in the world.

Sincerely,

Laura, sister of Judy

Lindaura1

Thank you also Elizabeth,

I put the word out for a Wound Care Nurse, so if my sister feels she will be better with one, she knows one is available.

Best wishes,

Laura

Sister of Judy

LoriCA

Thank you for your good wishes Laura, and I'm glad it helped your sister a bit to know that she's not alone in dealing with the emotional effects of that problem. It is a traumatic experience.

As for eating, I learned to just go with whatever I was in the mood for, especially because I was in really rough shape for a while and under orders to not lose any weight. My tastes would swing wildly from day to day, I would have cravings for something one day and the next day would get turned off just by the smell. My sister-in-law got me started on daily Ensure milkshakes (made with ice cream of course!) to make sure I was getting a balance of nutrients. Chocolate Ensure with coffee ice cream was always good even when nothing else appealed, and I could convince myself that it was healthy enough.

Best wishes to both of you.

Lindaura1

Thanks so much for all your input.

I just finished first line treatment for Ovarian Cancer, but like you, I was terribly sick with it.

My sister was healthy then and travelled here to stay and take care of me for over 2 months, training my husband and adult daughter on keeping me fed and watered. She lives in LA and I live in England. So it was an amazing feat.

Like you, I could never find much I could stomach, and would change from one day to the next. So we just kept trying one thing or another.

So now I am in my way to hopeful recovery and beloved sister is terribly ill, but I am not well enough to travel to LA to help out, so I am doing overseas overseeing, using our combined experiences to face this new onslaught.

Be well,

Laura

arm7016

Hi LoriCA

What was the name of the chemo that worked for you and helped heal your sores?

Also, was it Silver sulfadiazine that you used to comfort the pain?

Thanks!

Carol

LoriCA

Hi Carol, it was Taxol that healed my IBC ulceration the first time, and SilvaSorb gel that was prescribed by my wound care nurse. SilvaSorb is a controlled-release antimicrobial ionic silver hydrogel that promotes healing in addition to reducing infection,

This is a pediatric study, but a randomized trial between SilvaSorb and Silvadene (silver sulfadiazine) used until the skin grew back showed that Silvasorb was associated with less pain and greater patient satisfaction. https://www.ncbi.nlm.nih.gov/pubmed/19165109

arm7016

Thank you very much.