Please help. Open Wounds

fd411

labpsb (Paul) posted this in the triple neg forum, but perhaps he can also get some help here. Thank you all for any help you can provide.

Open Wounds....

Sorry for the long post.....

I see I am not the only husband, concerned to death and posting.  Maybe we should have our own heading.  Its funny I am very outgoing the other day my wife was in Chemo and the Hospital was having a Breast Cancer Celebration.  This round of Chemo takes several hours (long day) so I went outside to the celebration.  I walked and tried to mingle but the groups even the displayers were very clickish, and a male not wearing pink was like an IRS agent at a small business gathering.  Anyway I donated to several things and went back in to sit with my wife Lynne.  I have tried so hard to get her to post on these forums but she just stays away from the computers.

I am fortunate to own a company and I have been able to devote 100% of my time to fight this cancer.  My wife was an employee and I was also able to get her approved for permanent disability.  Mainly for the medical insurance to give us some options over our HMO later.

Lynne is 49 she was diagnosed with Inflammatory Breast Cancer, Triple Negative.  It hit hard fast and out of the blue last May (clear mammogram and perfect breast a few months earlier).  She finished 12 weeks of AC and is on a weekly Taxol.  The Oncologist was not pleased with the progress and wanted to add another drug, however her left breast has manifested several Ulcers, abscesses, open wounds, over the tumor area.  She has been in the ER several times due to draining and fever.  They are constantly draining and the fluid is clear with blood.  So the Oncologist did not add the extra drug incase she goes to surgery before our planned date in mid December.  Her doctors said last week they want to continue Chemo next year after the surgery and before and after radiation.  Cancer is in the lymph nodes but all other scans are good.  They are not optomistic about getting rid of all the cancer without the extensive chemo.

We have been together since she was14 and I was 15, our 30^th anniversary is coming up.  It's breaking my heart going thru this and I gave her my word we would face every step together.   So I also take care of the Home Care and daily wound care (I had the wound people train me).

The open wounds were a big surprise to both of us and I have not read anything anywhere about this condition.  Has anyone experienced this condition?

They are causing constant fevers and we seem to be in a race with them to get to surgery in December.

Thanks,

Paul & Lynne

TenderIsOurMight

Hi Lynne and Paul,



I am so sorry you are dealing with the triple hit of breast cancer, chemotherapy and it's side effects and on top of it all, skin ulcers, abscesses, and draining of the skin. I can imagine your anger towards this disease, frustration with a possible change in treatment, and anxiety and fatigue borne of too many hospital and doctor visits, needles, dressings and drugs. I understand fully your wish to know if others have had a similar situation, and if so what was done. My situation is not similar to Lynne's, yet I wish so very much to just respond to you, to let you know I feel so very much for you both, and will think and ask if any associate or friend may know of a means to help you.



I was going to ask what your breast surgeon makes of the situation, and what intervention or treatment he or she has suggested? Has he or she taken a biopsy of the ulceration and what does the pathology physician report is transpiring? Is this all the inflammatory cancer, or is some other condition added to it. Clearly they, being so close to the situation, are the one's who should decide Lynne's treatment course, whether surgery should be done sooner than December. If necessary, perhaps Lynne might consider traveling, even by ambulance if she is too weak, to a Comprehensive Cancer Center, where unusual events are not uncommon.



Taxol is a drug known to affect the skin, and can produce skin lesions of a blistering type, in addition to the well known hand and feet erythema disorder. Yet the lesions tend to be spread more widely, while Lynne's ulceration is above the tumor.



One very rare disorder which gives painful, pustular and necrotic skin lesions is a relatively rare disorder, calciphylaxis. While usually found in patient's with advanced renal disease, or disease of the parathyroid gland, where calcium balance is off, it came to my mind after reading a report of it's presence in a breast cancer patient who had neither of these. Regardless, it reinforces the question of whether a biopsy has been taken of the skin area Lynne has involved.



I'm sure Lynne has been getting excellent care, and I am so very sorry for her suffering. It's clear you have a deep loving relationship, and that Paul honors the "in sickness and in health" of the vows taken when so young. Many good men come here to post and question to help their wives or themselves, and many similarly support us behind the scenes. Yet breast cancer is stressful and draining, and many a good women here and elsewhere has lost her spouse over this dastardly disease. So thank you Paul, for reminding me that a love story isn't just in fairy tales....



I hope this forum helps you both in a situation where help is so richly deserved. Welcome to the Breastcancer.org discussion group, where a multitude of women and men become sisters and brothers by virtue of this dastardly disease. I myself just came aboard and feel greatly welcomed and supported. Soon others will come to offer their insights and their kind words which I've so often seen here and so amazed by. Truly, the breadth and depth of the ladies here is moving.



Lynne, I will walk along side of you, holding you close and will continue to do so your entire journey. I will keep you at the forefront of my thoughts especially these next weeks, helping Paul to buoy you up both physically and mentally. Paul, please post your thoughts, and specific questions; I will try my very best to research what ever you wish, which is what I both enjoy and feel a calling to.



Keeping you both close,

Tender

labpsb

Thanks for the ideas, thoughts, and prayers.  Both the Oncologist and Surgeon called me today to discuss options.  The open wounds number 3 and are the size if quarters, there are also some small ones, which have not broken the skin.  The large ones are at 12, 3, and 9 o'clock around the nipple.  They go in about 1 inch, I pack them once a day, and they drain enough to soak a shirt each day.

The Surgeon is also a well-respected Oncologist; she only does breast cancer surgeries. She also heads a breast cancer clinic. She has held off on the surgery because she is not happy with the margins and did not want to cut thru cancer.  I told her today this might be as good as the margins get and waiting 2 ½ more months could be disastrous.  She agreed, we have a catch all appointment on the 10^th.  Depending on how it goes this may be the pre-op.  She also is considering radiation now to improve the margins.  In the mean time we will continue with the weekly Taxol, the next one is this Thursday the 4th.

On the call with the Oncologist he assured me that if Lynne has surgery now he would restart her on Taxol and other Chemo drugs after the surgery in coordination with the radiation.

What a mess....

Thanks again,

Lynne & Paul

Jeannie44

Hello Paul

Your post reminded me of our situation as I am a husband caregiver and my wife has been dealing with open wounds since february.  That is when her invasive ductal carcinoma became inflammatory breast cancer after her masectomy and the cancer infiltrated her dermal lymphatic system around her masectomy scar.  She is also a triple negative.   She has an extensive open wound that has continued to grow and spread.   For the past 6 months the cancer has only been in the dermal area or lymphatic system but during the Sept PET scan some small nodules were discovered in her lungs.    I can only offer our personal experiences to share.  

After the diagnosis of IBC and the development of skin mets we transfered our care to the IBC clinic at MD Anderson eventhough we live in the midwest.   I give them credit as they have been very aggressive with the chemo and for several months a combination of Doxil/Gemzar/& Avastin was working and we were even thinking of surgery to repair the open wound until the Sept scan showed the cancer had become active again.   We are now enrolled in a Phase 1 trial at MD Anderson testing a new drug. 

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.  We need to fight her the pain constantly.  She is only 44 years old.

I believe I know what you are going through and you are in my thoughts and prayers.  Thanks for letting me know someone else is dealing with some of the same issues I have been fighting.  Take care... 

labpsb

Jeannie44

Thanks for your information.  The wound treatment you are following is identical to our situation.

"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.  We need to fight her the pain constantly.  She is only 44 years old." 

I am putting all my hopes that the removal of the breast will solve the open wound condition.  We have had the cancer since May (dx) and we have been dealing with the wounds since July.  Knowing what both our wives and us are going thru I can't imagine how you have been doing it since Feb.  Just the amount and type of bandages used has me considering buying stock in those companies.  

This Wednesday Lynne and I should have in place the new direction we will take for treatment.   I am trying to find a break in the treatment so we can travel a bit in our Motor home.  But its not looking good for at least another year.

Although we are relatively new to this I am concerned my wife has never expressed her ability to win this fight.  She has expressed the opposite.   I don't know if I should get her into some counseling, we have been spending all our time in the active fight against the cancer.  We also live in a remote mountain area, making even the simple treatments hours away.

thanks again  Paul

Jeannie44

Paul

After my wife's recurrences prior to her mastectomy (she has had some form of cancer for over 2 years now), our doctor put her on anti-depressants (Lexapro).   Even with this she is frequently depressed but I hate to think what she would be without the anti-depressant.   You and your wife are in my thoughts and prayers. 

Caseysmom

Paul and Jeannie44:

I was diagnosied with IBC at 36 and I am currently in remmsion however I did not have wounds that both of your wives have.   

I give you both a lot of credit for taking care of your wives not to many men would do so. Kudo's to both of you.

I will keep you both in my  prays.

Hugs from Michigan!

Laura

labpsb

After meetings and exams with numerous doctors (radiologists, oncologists, surgeons (breast and plastic) wound care) Lynne will be undergoing intense radiation for six weeks with her open wounds before surgery.

She has stopped weekly Taxol and already had three days worth of radiation; they give us an exam room so I can deal with the open wounds before and after.  The wound care department is also giving us unlimited supplies. 

Lynne's main oncologist will meet with us in January to restart Chemo after surgery. 

Just hoping and praying we get clear margins for the surgery, due to the open wounds surgery is going to take place clear margins or not.

Paul  & Lynne

kristi43440

I assumed the open wounds were commonplace for IBC.  My mom has IBC and has had some open wounds for a while that need to be dressed.  She has gone through chemo then radiation and now chemo again.  Her wounds have seemed to get a little better after the radiation, but be prepared that the skin will be very red after radiation.  My mom uses a silver nitrate (I think that is correct) for her wounds.  I believe her doc told her she could use either aloe vera gel or aloe vera lotion to help with the radiation.  I would of course ask your onc if it is ok to try any of those things first.  I hope all goes well for everyone, I know this can be very hard at times.

labpsb

We have had to change things around a bit for the care and packing of the wounds.  Lynne's largest open wound 3 plus inches in diameter is at the bull's eye of the radiation.  We have been instructed no wound care with metals i.e. silver nitrate and many others.  Also only natural deodorant and I had been giving her 3000 of vitamin C each day.  The radiologist said stop immediately.  And of course we picked up the 100 % Aloe Vera for skin care.  

We never expected to be dealing with this degree of wound care.  Or really any open wounds at all until the surgery and then only to deal with areas of the operation.

So we take it as it comes.

Paul & Lynne

Caseysmom

Paul & Lynne:

Good Luck with the radiation.  I do not know if Lynne can use biafine my radiation onc prescribed this for me to help with the radiation burns.

You are both in my prays.

Laura