Stage IV IBC with mets to lungs and Fungating tumor

edzedz · June 2016

Hi all. My wife was diagnosed in November last year (after gps mucking around for 6 months) with inflammatory breast cancer. The CT scan also showed 4 small tumors in her lungs and issues in her lymph nodes. They offered my wife the usual chemo and radiation but they stated that the possibility of cure from those was less then 3%. We decided that quality of life was more important and we would try alternatives.

We did opt for lymph node removal so they could check to see what type of cancer it was (estrogen positive). They removed the nodes under her arm beside the breast. Shortly after the surgery her breast started swelling. We went to dr who gave her antibiotics. It kept growing. We went back to the Dr a week later and tried to get them to aspirate as it was now HUGE and very uncomfortable. Dr refused. A week after that It developed a bubble from all the pressure so we went to Emergency to ask them to aspirate. They also refused. Another week and it started to leak. We went back to emergency who STILL refused to aspirate and instead admitted her to the wards and gave her IV antibiotics. 3 days later a surgeon finally came to have a look and as he was peeling the dressings off it exploded. All over my wife, in her hair, over the bed it was running over the floor. they estimate it was between half a liter and a whole liter of blood and fluids. She was taken into theater that day and they finished draining it. She was sent home the next day with a stoma bag over the hole. The wound healed up over the next few weeks which normally would be a good thing but not this time. Once it healed her breast started to swell again. The surgeons refused to put a drain in it as they said after a couple of days it would just infect. Luckily we have some awesome district nurses who taught my wife how to put in a wick. So twice a day she would pull out the wick, drain it and put the wick back in. That worked for a good month or so. But then another bubble turned up on the side of her breast. This one popped itself fairly quickly and it didn't heal so a stoma bag was placed on it. The hole at the top started to ulcerate and grow. Her surgeon said it was a fungating tumor and they started bandaging it.

Now my wifes breast is HUGE it hurts her back from the weight. The surgeons are only offering her 1 choice which is to remove her breast but not close it up. They said it would leave her comfortable for 6 weeks but she would only survive for a total of around 8 weeks as the cancer would come back aggressively after the 6 weeks. It smells from the bacteria, we have to remove her dressings once or twice a day. My poor wife. She puts on a mask which she has peppermint oil on and still she gags and sometimes vomits during the change. She bleeds, a lot, during the changes and she has now been in twice for blood transfusions because of the blood loss. 4 units of blood and then another 2 units 1 1/2 weeks later.

Has anyone had success in treating fungating tumors? There's so little information on them. The doctors (both GP and hospital) just shrug and say there's nothing that can be done apart from their mastectomy "that will leave you comfortable for 6 weeks". I'm not looking for advice on the cancer. She takes almost $200 a week of supplements and is on an anti cancer diet. We need help to stop the fungating tumor.

It has taken a while to get up the courage to post on here as I have seen so many people get attacked for their views but just in case anyone has ideas I'll brave the flaming.

She · June 2016

Ed, I'm so sorry your wife is in this position. I'm not going to try to convince you to go back to conventional treatment. I don't know what type of chemo was offered. Often when breast cancer has metastasized (MBC), chemo is offered in lower dosages than regular 'curative' chemo, for a variety of reasons. Sometimes hormonal treatments are appropriate, their side effects are generally more tolerable than chemo. If this wasn't explained properly, it may be worth revisiting, if only for more details to make the right decision. It's a very personal decision, that is generally respected by others with mets (metastatic disease).

Regardless, her wounds need to be managed, and she needs to be kept as comfortable as possible. Given the timeframe the doctors gave, you might want to consider calling hospice to assist you. They will help manage her wound, and her pain, letting you focus on having quality time together.

In the interim, worldwide wounds.com has some good information on managing fungating wounds, like the use of activated charcoal dressings to help with the odour.

www.nursingtimes.net also has information on wound management.

Macmillan cancer care website (UK) also has some information

If you google 'scholarly articles for fungating wound treatment' there are a number of articles that may assist you.

I wish you and your wife the best under these very difficult circumstances. If she's able to get on the computer, I highly recommend she visit the Stage IV message board here, where she will find care and support. It's a respectful group exclusively for Stage IV. There's also a Caregivers board that you might find helpful as you should also have some support.

After 20+ years, the last 3.5 with MBC, I personally believe in the use of both conventional and alternative therapies.

Edited to add: Has your wife seen a breast specialist or oncologist? I think this situation is beyond the scope of a GP, but that's just my opinion.

edzedz · June 2016

Thank you She. I will have a look at those sites and see if I can spot anything new.

Unfortunately, My wifes medical oncologist was a rather abusive individual. Even the oncology nurse was stunned to the point of finding my wife afterwards and suggesting she lay a complaint. We live in a small city and we have limited financial means and there is often no second opinion available to us. To quote our GP "you go up to the hospital and you get who is there. You do not get to pick and choose who you are under". We live in New Zealand where there is "free" health care. Which translates to limited free health care with no extras.

My wife has had an extra difficult time as she suffered PTSD from a previous abusive relationship and has a terrible time having her breasts examined by males, although with a great deal of counselling she is getting better.

We are already under hospice who provide us with basic dressings free of charge which is nice because she goes through a LOT. Our requests for charcoal dressings have been met with a "we don't have any" response. I tried making them myself but they didn't seem very effective. We have also tried to have hospital and hospice supply us with silver and manuka honey dressings but we were told they were only for burns patients and not cancer patients. We tried metronidazole 5% in a solution but after a week it didn't appear to have any effect and we were told after that it wouldn't be subsidized and we would have to pay for the drug and the pharmacist to make it each time. We asked for the pills and we would make it ourselves but that request was turned down.

There are some failings with our local hospital which have been acknowledged by several officials up there. They even approached us to get our story of my wifes journey "on the cancer pathway" and meet with us on occasion. Its all a bit weird at times. There are some people up there who are amazing and others who are terrible. A good example is my wife is on tranexamic acid to keep her bleeding reduced. She takes it orally and if she hits a bleeder during dressing changes we crush some and mix it with some water and pour it into the wound. One time while my wife was getting a blood transfusion (they have taken to calling it a top up) the dr on that night refused to allow her to have her tranexamic acid. They gave her a unit of blood (around 300ml) and she did her dressing change before they gave her a 2nd one. She took the dressing off and lost around 500ml of blood. It went everywhere, even up the walls in the hospital shower. Luckily there was a good nurse on who helped my wife. She ended up with a total of 4 units of blood during that visit. An hour later there was a shift change and the next dr immediatly charted her tranexamic acid.

When she is in hospital (it happens a lot) sometimes we get nurses who ask if they can help with her dressings (3 of them once) so they can gain experience. Other times the nurses refuse to help at all and I travel in and do them with her.

At this point I need to explain. My wife removes the dressing, washes it and puts the dressing in place. She then comes out and I put the tape in place. I also make up the tranexamic acid when she needs it and pass it to her. She refuses to allow me to see the wound itself (although I have glimpsed parts of it) so I may not be able to give full information apart from what she has described to me.

We have not totally spurned all contemporary medicine and Drs. In fact right now my wife happens to be up visiting at the home of the head of the emergency department with a small group of friends. Its just that some in that place are very difficult. The local hospital is well known for hiring the cheapest Drs the world can offer. The only ones who come here are either humanitarians who don't need the money or have trouble getting work elsewhere. The nice ones often apologize while explaining that there is a rigid set of rules they must follow and they cannot step outside of them.

abigail48 · June 2016

you probably mentioned this with your post, can't recall but here it stopped outgassing pdq with the first dressing which had some colloidal silver gell. an arosole soray works well too. not to use every day. it tried to open another hole to outgas once but it healed over quickly. this was several years ago: I've never been diagnosed. sending healing thought s though

edzedz · June 2016

We tried collidal silver for a while. I purchased a generator and made it myself. After it not working I made another batch and left the generator running till the water got cloudy. I'm not sure how high strength but it was potent. Didn't help.

Italychick · June 2016

I don't know how into alternative stuff you are, but we had a terrible situation with bleeding sores on our dog, and we found this stuff called Yunnan Baiyao that stops bleeding fast. I have also used it on myself for wounds (not cancer related). The other thing that can help is sprinkling vitamin K2 on bleeding wounds, it causes coagulation.

So sorry for your wife's issues, and I hope you find something that helps.

https://en.m.wikipedia.org/wiki/Yunnan_Baiyao

edzedz · June 2016

K2 is an interesting idea. And I will have a look at Yannan Baiyao and see if I can import some.

Thanks.

abigail48 · June 2016

cypress essential oil can sometimes help with bleeding when on a dressing

edzedz · June 2016

cypress essential oil looks interesting. Not sure about the sedative part. She has trouble staying awake now.

SelenaWolf · June 2016

Are the doctors, at least, doing something for the pain and discomfort that she is feeling?

Anonymous · June 2016

edzedz, Im so sorry. What part of NZ are you in? PM me to keep that private if you want. What you've described is absolutely reprehensible and these stories are breaking more and more.

I don't know anything about fungating tumors. I can't imagine the horror you are going through. I've done conventional but I don't rule out other things either.

edzedz · June 2016

The doctors love to do the basic 2 pain killers. Ibuprofen and panadol. Her alternatives are keeping a lot of the pain at bay although shes been having problems the past few days so it may be time to increase things a little.

What has been happening to us is not good but we are too tired to fight the establishment. It has been acknowledged that she has not been treated the best. Unfortunately this is not the first time we have had a hard time with the medical establishment. Makes it hard to trust them.

DJFJ · July 2016

I was originally diagnosed with bc in 1999 and refused surgery, chemo, and radiation (infiltrating ductal carcinoma--HR+). I took several supplements, herbs, and changed to vegetarian diet. This worked fine for years-- I felt great and went on with my life. Then in 2004 I decided to try cansema black salve to remove the tumor and everything went haywire. I had an open sore on my breast -- my doctor was appalled that I still refused chemo so he wouldn't recommend payment for my treatment of choice -- hyperthermia. I went to a southern California center (luckily close to where I lived) and had the treatment done. I had to pay out of my pocket -- it took almost my life savings. So after the hyperthermia treatments, my tumor markers were normal and the wound was healed. The only thing I didn't like was they insisted on doing radiation, as well but I was fine for another 5 years. Then in 2009 I had a recurrence (I think because of the radiation) with mets to the skin and bones. I was living in Cleveland and began seeing a Cleveland Clinic oncologist-- I took Femara for 2-3 years; radiation on the spine. However, in 2013 I began having serious problems and finally consented to chemo -- 17 weeks of Taxol, which I tolerated well but we had to stop because I had neuropathy in hands and feet. After Taxol was done, the doctor said I had a tumor in the liver. I was on Xeloda for a while, then Ibrance/Femara, and am currently on Afinitor/Exemestane. In the past 6 months I developed a large fungating tumor on the side of the breast (where the original tumor was). It had a strong, unpleasant odor and constant exudate. I didn't ask my onc for a wound specialist -- mostly out of embarrassment but I wanted to do research to see what wound care nurses recommended. I bought MediHoney off the Internet through Amazon.com and read the reviews. I applied it at least 2 times a day. Almost immediately it removed the odor and the slough (white material) down in the wound came out too. Now I'm using Iodosorb gel, which I also get through Amazon. I clean the wound once a day with saline solution; then put Iodosorb on a bandage. It keeps the bacteria out and is closing the wound. Hope my story helps. Best wishes to your wife.

DJFJ · July 2016

I was originally diagnosed with bc in 1999 and refused surgery, chemo, and radiation (infiltrating ductal carcinoma--HR+). I took several supplements, herbs, and changed to vegetarian diet. This worked fine for years-- I felt great and went on with my life. Then in 2004 I decided to try cansema black salve to remove the tumor and everything went haywire. I had an open sore on my breast -- my doctor was appalled that I still refused chemo so he wouldn't recommend payment for my treatment of choice -- hyperthermia. I went to a southern California center (luckily close to where I lived) and had the treatment done. I had to pay out of my pocket -- it took almost my life savings. So after the hyperthermia treatments, my tumor markers were normal and the wound was healed. The only thing I didn't like was they insisted on doing radiation, as well but I was fine for another 5 years. Then in 2009 I had a recurrence (I think because of the radiation) with mets to the skin and bones. I was living in Cleveland and began seeing a Cleveland Clinic oncologist-- I took Femara for 2-3 years; radiation on the spine. However, in 2013 I began having serious problems and finally consented to chemo -- 17 weeks of Taxol, which I tolerated well but we had to stop because I had neuropathy in hands and feet. After Taxol was done, the doctor said I had a tumor in the liver. I was on Xeloda for a while, then Ibrance/Femara, and am currently on Afinitor/Exemestane. In the past 6 months I developed a large fungating tumor on the side of the breast (where the original tumor was). It had a strong, unpleasant odor and constant exudate. I didn't ask my onc for a wound specialist -- mostly out of embarrassment but I wanted to do research to see what wound care nurses recommended. I bought MediHoney off the Internet through Amazon.com and read the reviews. I applied it at least 2 times a day. Almost immediately it removed the odor and the slough (white material) down in the wound came out too. Now I'm using Iodosorb gel, which I also get through Amazon. I clean the wound once a day with saline solution; then put Iodosorb on a bandage. It keeps the bacteria out and is closing the wound. Hope my story helps. Best wishes to your wife.

Forgot to mention - and this is the MOST important. After being dx in 1999 I only missed my first day of work in 2013 when I started chemo. What held me together all those years? ----- POSITIVE ATTITUDE and PRAYER!!!

abigail48 · July 2016

that was the worst when it began to give off that terrible odor. I googled the name of it, there is a name but I never wrote it down. a few people were around when this was happening. so terrible embarrasing. one I've never seen since. as soon as I could I went to the drug store clerk and got the way to dress the thing and it came with some silver gell. have never had this trouble since.

edzedz · July 2016

Wow! Iodosorb gel looks like a fantastic product. I just have to try to obtain it here in New Zealand.

My wife requires blood transfusions every 2 weeks now. The hospital has said its going to get worse but they will not do them more frequently as that becomes an "ethical dilemma".

abigail48 · July 2016

I'm not bleeding much at all now. I seldom wash it: the shallow hot baths with essential oils seem to dry things out.and I seldom try to debride as that often causes a bleed. and the bleeds weaken too much

pipers_dream · July 2016

http://www.monarchlabs.com/mdt

Disclaimer: this is extremely radical but not new. I'm offering it up b/c Ed and his wife have no other choices. Please read with an open mind. Good luck!

Fallleaves · July 2016

Edzedz, I'm so sorry your wife is having such a rough time of it.

Here is an older paper that gives a good overview of different topical products that can be used for wound treatment. This mentions the Iodosorb gel that DJFJ told you about.

http://www.podiatrytoday.com/article/597

There seem to be a lot of case studies in Japan involving the use of Mohs paste to treat breast cancer patients with lots of bleeding and strong odor from their wounds.

http://www.ncbi.nlm.nih.gov/pubmed/27220790

http://www.ncbi.nlm.nih.gov/pubmed/24394125

http://www.ncbi.nlm.nih.gov/pubmed/23267973

I think the main ingredient in Mohs paste is zinc chloride, but this study which was about treatment of malignant skin wounds in dogs and cats, mentioned a modified Mohs paste consisting of zinc chloride, zinc oxide starch powder, glycerin and distilled water. So, I think it would be possible to make your own.

http://www.ncbi.nlm.nih.gov/pubmed/26828294

LM070917 · July 2016

I haven't tried it myself, but what about apricot kernels https://thetruthaboutcancer.com/apricot-kernels-fo...

Miracles and turnaround can happen, so sorry to hear about your wife, but i would give anything a go if there's hope.

edzedz · July 2016

Thank you for your responses. Its been an interesting week.

I tried to order Iodosorb from amazon but they will not ship it to New Zealand. I looked at other suppliers and it was going to cost me $14,000 a year to get it with a 2 month wait for it to be imported.

So I contacted Smith & Nephew New Zealand (where I live). They contacted the local hospital who, it turns out has a wound care team. After a little fury that after 4 months of this we were ever once told about them, they came in and we now have a free ongoing supply of all the dressings we need including manuka honey dressings and staff will come to our home once a day to do the dressing changes for my wife. The whole thing is going to be a collaboration of the wound care team, district nurses and Hospice staff.

We have tried b17 (apricot kernels) but didn't find them to be all that effective at this stage. But then again our current focus is on the fungating tumor on her breast. Everything else is secondary to that. Once we have it under control and my wife has more strength we will be able to concentrate on the other tumors.

Fallleaves · July 2016

Edzedz, I am so happy your wife is getting help from the wound team now, although I find it unconscionable that it took 4 months for her to be helped by them. Your hands are very full right now, but I hope you will tell someone on the team that there is something very wrong with the system when someone in as much need as your wife suffers for so long when there are specialists who could help her, and that this should trigger a change. There should be some kind of internal review to ensure that in the future, patients are quickly connected to the wound team when their services are needed. Clearly there is a disconnect (or multiple disconnects) going on.

I really hope they help improve your wife's quality of life. My best wishes to you both.

ChiSandy · July 2016

Medical maggots, while disgusting in concept, are quite effective. They’ve been used for centuries, with little to no downside (except squeamishness on the part of healthcare personnel). Sometimes they are used in ERs to debride rodent ulcers and ultimately prevent gangrene. They are not that far removed from those trendy pedicure salons where little teeny fish nibble at the callused skin on your feet in the footbath. Same principle, really, except that the fish are sort of pretty and people are willing to pay through the nose for that. Any gentle and gradual debridement is a kindness, so if you can get past the “ick factor,” maggots can work. (But manuka honey is a lot more pleasant).

Stage IV IBC with mets to lungs and Fungating tumor

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