Hyperthermia For Chest Wall

FloridaLady

I just wondering if anyone has seen the new info that is going to trial using hyperthermia with rads or chemo or both? Research is showing this might be the way to treat IBC and chest wall recurrences.

Hyperthermia is were they heat a area in the body for about a hour to 108-114 degrees. They than follow it with low grade rads or low dose chemo. They principle around this is that the heat will open up the cells and make them soft to absorb more treatment.  As much as 35% more.

I'm looking into this but I only see a couple of trials that are only heating once with treatment.  Research shows the area needs to be heated at least a couple times after treatment. Has anyone else seen anything?

Flalady

 

drnix

I had hyperthermia in connection with radiation at Rochester Mayo in MN in1996 or 97 - can't remember.  It did not help me but I do think the theory makes sense.  I had substantial skin mets at the time - and who knows - maybe it did do something elsewhere.  At that time it was a rather uncomfortable treatment.

FloridaLady

drnix,

Thanks for you response.  My doctor did some of the studies in this time frame and did not see much difference.  The big difference I guess now is that the machine they heat with is better also the probes too monitor your internal heat of your tumors better.

You can see some good info from Duke Univ on Youtube.  They have been working with this about five years now.  I also looking at it with chemo ( Doxal).

I have to ask what did finely help you? That was twelve years ago.  You must have found something to help you come this far.  I think you are one of the longest I've seen with IBC.

Thanks again.

Flalady

cp418

http://www.medicalnewstoday.com/  Enter 'hyperthermia breast cancer' in the search field and numerous news articles listed.

http://www.vci.org/inflammatorybreastcancer.htm

FloridaLady

Thanks cp418.  I've already spoke with VCI and trying to decide is this the right route to go next.  I just don't know if I want to spend the next four months in LA....

Flalady

downtownfan

Hi FlaLady-

I just happened to pop in to check up on all you ladies tonight and saw you were inquiring about Hyperthermia and VCI.

I have no idea how extensive your skin mets/chest wall issues are but....... as you know that is where we took my mom for treatment. I do believe that if we had took her out there earlier it would have been better. With that being said, we weren't exactly happy with the staff at VCI.

They tend to just keep treating you even when you are probably past the point where the treatment will work. You will be frustrated if you are used to an office being run well. They are definitely not the most organized. Also, she really should have been treated for the blood clot and infection at a hospital but like I said they sort of just focus on what they can do not exactly what the patient might need.

I have no allusions that she was a very sick person when we took her out there. I don't believe that VCI did anything wrong in terms of her death. However, I do wish they would have just been frank with us about her condition. We would have taken her home so she could pass away with her family. I honestly don't know if it is that they were so convinced that their treatment could help her, or if they needed the money, or if they just weren't paying enought attention to her condition whatever it was it I do believe that she received inadequate treatment.

With all that being said, I would probably do it again. We were searching for something that would help her and the hyperthermia did help to clear up her skin. It was just that her mets were so extensive that it was just too late.

I wish that I could help you more in your decision but I think you should absolutely do whatever treatment options are available to you and that you feel comfortable with.

VCI is incredibly close to Venice Beach and the apartments they have are about a 5 minute walk to the facility. We were actually able to take my mom in the wheelchair to Venice Beach and I am thankful she got to see the Ocean one last time.

If you want me information about it, please absolutely PM me. I will do my best to answer any questions you have.

drnix

Responding to FloridaLady - yes, really by the grace of God and fantastic friends and family support I have been at this since surgery in February,1994.  I have had treatment of some kind the whole time (short of the first 2 years) - being on Herceptin now for 10 years.  I have been following a couple skin mets (round, warm ones) for a while now and have decided to pursue other treatment.  I meet with the oncologist Tuesday and hope to add Tykerb to my Herceptin.  I applied for Miltex but never had a response.  I do intend to ask him about Aldara (thank you).

 God bless you on your further treatment options.

FloridaLady

downtownfan was very kind and spoke to me on the phone in more detail.  She and her sister both said they would go back to this clinic if they got bc.  Both felt they were not always the most organized place but they did meet people with good results.  I think I found a place here in Florida at a regular cancer clinic that specialized in research trials that will do this for me closer to home.  I hope to get a appt next week.  I will keep everyone posted. 

Flalady

ibcspouse

Gg08

I just logined  to see what's happening and report.  The trial seems to be doing great on the skin...the clearing of the mets, rash, thickening, and edema..has been just short of amazing.  We are waiting on results of PET scan she had Friday.  The only SE we have found, is it has aggravated her COPD so her breathing is some what labored...Called the nurse about that this morning, so sent to ER for evaluations...her O2 levels are fine, but will be here a while waiting on blood test, xrays, and such. 

The main thing that has happened in the last few days, is her reduction in pain...she has been off any pain meds for the last few days.  This is a first for months.  So we remain skeptical but enthused by this combo of drugs.  She has only had 2 treatments so far. 

FloridaLady

ibcspouse,

I so glad Cam is having a good response.  I'm watching and hoping for this trial to come to some place in Florida.  I will trying to make appt at Florida Cancer Institute - New Hope. They do both hyperthermia with rads or chemo.  I'm hoping to find out if I'm a candidate....I worrying about rads because I have tumors under my arm in the skin and I can't raise my arm for rads??? This could bump me out of this treatment option.

I see the same trial is at Mayo but I can't find out if it is at Mayo Jacksonville.  Also this new place I'm looking at is very active in trials....just maybe they do this for me soon.

Gg08 I will let you know what I find out.

Flalady

Flalady

TenderIsOurMight

Wishing you much strength and support all. I hope these trials work out well for your skin mets!

 

I'll say a daily prayer.

 

((Hugs))

Tender 

Caseysmom

ibcspouse:

I'm glade that the treatments are going well for Cam!

Flalady: 

I hope you can get into a trial soon.

Keeping everyone in my prays

Hugs

Laura

downtownfan

Please if anyone has any more questions about VCI or hyperthermia please feel absolutely free to PM me. I think there were a lot of missteps in terms of my mom's overall IBC treatment (not just at VCI) if there is anything I could do to help someone else avoid those I would certainly do whatever I can.

FloridaLady

I just wanted to let anyone who is interested that hyperthermia with rads is a great treatment option. I wished I knew about it three years ago.  I don't think I would be where I'm at now.  I've only had the opportunity to have 12 treatments and this really knocks down the skin.  I have to stop because of to much disease and LE problems but if you have only a little disease or just diagnosed I would hunt for a clinic to do this. 

Flalady

FloridaLady

I start my trial this week for hyperthermia with Doxil (form of Adriamycin).  I wanted to let anyone know that has not taken the maxium dose of Adriamycin you can do this trial.  I think you do have had to fail two rounds of chemo. (I'm not sure on this) This company will pay for you to travel to Florida to do this trial.  If you need info please contact me.

Flalady

lexi4

Saying a prayer for great results Fla Lady. You have been through so much and I pray that this brings relief to you. Get those skin mets!

Lexi

FloridaLady

Hi Gg08

I've not spoke to Cam, VickiG or Pinehouse lately.  My special little group is not doing very good right now.  We are all TN sister who had the same journey up until now...

Flalady

My first tx was ok except I have horrible lymphedema that started before treatment.  The pain is horriable...but the skin did dry out in places so maybe it did do something???

Caseysmom

Flalady:

Keeping you in my prayers.

Hugs

Laura

RingUSA

Hello,

 I found this forum yesterday and have already received some very helpful information.... my mom has been battling breast cancer for 15 years. I am not as familiar with the terms used here but my guess is that she has IBC - it has always been a battle on her chest wall and the Dr @ Stanford has always called it chest wall cancer. She is not able to have any more chemo so we are now trying to deal with these big sores that appear to be spreading in every direction - very scary!  The oc has no options left for her.... I am looking into Hyperthermia (through  VCI in Los Angeles) My husband will go there tomorrow to speak with one of their Drs.  I've also seen something called Phytodynamic Therapy online - anyone know anything about that??  I would rather find something closer to home ( I'm in Northern CA ) so she could stay home and do treatments -

 Any advise would be welcome! thanks for your previous posts - it's so good to be able to read about this - we have felt very alone - thinking my mom's condition was a rare one! 

Blessings to all of you - so much suffering out there! 

FloridaLady

RingUsa

I have a contact name if you are interested in hyperthermia with doxil.  Doxil is given at a low dose of 40 mg every three weeks.  This is Adriamycin in fat liquid.  If she has not met the 750mg life time for this drug she can do this trial. The trial organizer will pay all travel expenses to come to Florida for this treatment.

Phytodynamkic is the use of higher level ultra sound and heat to break up surface tumors.  I could not find anyone i n the states using this yet.  The only place I found was in England.  The company I'm doing the trial with now hopes to have this in  trial at a later date.  Let me know if you can find anyone doing this trial.

I hope you find some help for your mom.  These open wounds a horrible.  A friend  online here when to a burn unit at a hospital and was given some special enzymes to eat the dead skin away.  She said this was painful but did help some. I also talk to Valley Inst but I just did not feel comfortable about them after doing some research.  The clinic I'm in right now will also do hyperthermia with rads outside of a trial.

Flalady

RingUSA

Hi Flalady,

 Thank you for your help! 

Do you mind sharing with me about the Hyperthermia and if it is helping to get rid of the open sores? My mom's condition is changing so quickly. The sores now have quite an odor and are draining more in addition to spreading in every direction on her chest. Does Hyperthermia actually clear them up, stop spreading, control odor?

I have called VCI, then sent my husband and son there to check them out. They said the Dr was very nice and encouraging. If anyone has any details on  VCI that I should know about please please contact me.  I'm feeling very desperate - my husband had a huge cancer battle 9 years ago, we took him to Mexico for treatment (CHIPSA) and nearly lost him. I just don't want to get into another one of these situations where I falsely believe we are being helped because we want it so badly to work. My mom's cancer has not spread past her chest, as far as we know -  I sure wish that we had the Hyperthermia treatment available in N. CA so she could stay in her home. 

Please, if anyone out there can give me hope RE: treatment of IBC w/ Hyperthermia I would be so grateful! How long before we see results? What does the healing process look like? Black scab? whitish/ yellow scabs? Does drainage stop soon? Maybe all of this is written somewhere - but I just can't find it? 

We are planning on taking her to VCI this weekend to begin treatments Monday...unless I can figure out something better.... 

Feel free to PM me with any information.

Thanks in advance,

RingUSA 

Jessica29

I've been making some enquiries about photodynamic treatment here in England. I had never heard of it but will certainly be asking about it at my next hosp appt.

 Two people from different parts of the country have been treated regulalry and tell me they have had good results, one for skin mets the other for skin carcinomas.

Jackie

FloridaLady

Jessica,

Let us know what you find out.

Flalady

RingUSA

Hi Ladies,

Just thought I'd give you and update on my mom. I am fairly new here so most of you don't know me but, my mom suffers from IBC. Her chest wall is all broken out in sores.  Since Feb. 09, Stanford Drs are no longer able to treat her. A week ago I took her to a Dr. who does hyperbaric treatments He said he could help with the sores on her chest but didn't feel that hyperbaric would do anything for the cancer. We then made the decision to take her to VCI in LA.  It is exactly as stated about, a little disorganized! We have spoke to several patients who are being treated at VCI and have been helped. My mom has been going there for one week now - and we cannot see any improvement yet. This is the only other option I can find to help her - this and prayer! They did do scans on her the first day - we will get those results tomorrow. All of the people at VCI seem very nice, compassionate and extremely positive about being able to help my mom!  I will keep you posted on the results of her treatments. 

Sincerely,

Gail 

FloridaLady

Ring,

Praying for you both.  Please do keep us up to date.

Flalady

FloridaLady

Gg08

The thought behind not treating with hyperbariac is...this can make your cancer grow!  There is not enough research yet.  I also checked into this.

RingUSA

Hi Flalady,

 We have been at VCI in LA with my mom for about 10 days now. They are treating her with antibiotics - both oral and cream for the infection on the chest wall. The sores are similar to what you describe... open with scab, raw, yellowish in some areas - draining the yucky stuff, has odor. It has helped her a lot to flush 2 or 3 times per day with hydrogen peroxide. VCI had us dilute it 50% with saline solution. I spray and spray and soak and saturate allowing the yellow to loosen and come off. It helps the odor and has begun to dry some. Also, the antibiotics seem to be helping a lot.

The oncologist sent her home - said if she didn't want more chemo then it was a waste of her time and his to come back to him - there was nothing he could do. You would think they would walk you through each step and try to help! I guess they are kind of stuck in a box and can't see past it.

I agree with the downtownfan about the VCI not being real organized but they are sure nice people who care and truly want to help! (my perspective so far....) Since they are the only people who seem to offer any medical hope at this stage - we are trying it!

So, besides the antibiotics VCI doing hyperthermia and low radiation. The mets look like they are increasing and spreading - not sure when they will get under control. We met some very interesting patients at VCI. Some have been helped a lot. One lady with colon cancer - her tumor has reduced by 60% in 2 months of their treatments. She first went to Germany for the same treatments (hyperthermia). Another lady who has ibc who said it takes about 10 days of treatment before you begin to see results... My mom has only had 8 days of treatments.  She will meet with a wound specialist on Tuesday. I'll let you know if they have any new treatment for the chest wall.

My mom got her scan results... the cancer is all on her chest wall - and one  tiny spot in her lower left back area but not in any organs. They called it stage 3 but then another dr. there called it stage 4. A little discouraging but better than it being in organs.  I just wish we had started this treatment last year before Stanford did their last major radiation treatment that didn't do any good at all.

Have you heard how this progresses? I just want to know what to look for. My mom is worried about a little cough, overall not feeling well... Can she go on a long time with open wounds on her chest?

 We are a very close family so we will all be in LA with her. I have 5 kids 23 to 13 years.... we try to keep her and my dad busy and not alone. My husband is the researcher and asks lots of questions of all the VCI staff.... if you have any questions for them, let me know. Also, they said they think they can get the sores healed... they said if there is a stubborn spot that won't heal because of radiation, they can send her to UCLA med ctr for hyperbaric treatments. This is the third time doctors have told us that hyperbaric can help and  they say it's not proven that it causes the cancer to grow. Although, the oxygen theory does make sense - and it seems that the cancer may thrive in it. It's all a bit confusing.

I've gone into a lot of detail here - in hopes that it can help someone. I have my mom's list of supplements that have helped her through the chemo, radiation and with nerve damage. I'm happy to share those too.

Bye for now and God Bless all of you. My heart just goes out to all you ladies who battle this - I will keep you in my prayers.

Gail (RingUSA) 

RingUSA

Hi Bonnie,

Yes, it looks like hyperbaric may be in the plans of the drs at VCI for my mom. We will be asking a lot of questions to the drs about it first... l let you know what we find out. 

thanks so much for your prayers... they are greatly appreciated!  We will all be praying for you too. If you have any questions you want us to ask the drs at VCI... just let me know - I'll add them to our list!

It seems like the oral cipro and the antibiotic cream are helping. It's difficult to distinguish the cancer from the infection but the chest is a bit clearer and dryer in the last couple of days. The hair dryer on cool setting also helps to dry the area after each cleansing. I think I got that tip form someone here.

Thanks for your concern and suggestions!

Prayers and blessings,

Gail 

FloridaLady

Gail,

I'm so glad you touch base and let me know what is going on. IBC uncontrolled or as a recurrences is considered to be stage iv disease by the way.  This is because it is pretty impossible to control the disease.  Even SSI disability consider us stage iv.

Thanks for the info on cleaning wounds...what kind of antibiotic? I with you about doctor's want to just drop us on the side of the road with this because they don't want to do any research for us.  Very disappointed in my long term oncologist.  He will not even give me chemo if I want it.  I do want it because now it becomes assisted death because I will die from chemo toxicity before I die of this discussing skin mets.

My big fear also is living with this nasty skins for years.  yes we can go a long time and infection is usually the cause of death.  The thought of this scares me sooo much.  I asked downtownfan daughters how there mother was at the end...they both said it was a horrible way to go.  People don't even want to come into the room with you because the smell is to bad.  They had healthcare workers who would not stay with and help her.

I to have a cough that will not go away.  She is probably ran down from treatments and just plain depressed with this.  I have to tell you I've never been upset with my disease until the skin goes really bad.  Other just can't imagine how this feels and looks to us. 

Please keep me up to date with her care and what you learn.

flalady

TenderIsOurMight

An arm around your shoulder for you ladies. Open lesions are a great problem in breast cancer, and it saddens me that more directed research is not done to help you. 

Years ago I saw women who had undergone skin removal for cancer (for primary cancer, not mets to skin though) placed in big PT whirlpool tubs into which a small amount of betadine was added. It was remarkable to me how their open draining lesions progressively healed. Betadine is known to be an antibacterial (which then fell out of favor for reason which is unclear to me); somehow the whirlpool action helped though-perhaps by dispersing the antibacterial concomitantly with the hydraulic action of removing the yellowed skin. Upon removal from the bath, a hair dryer on low was used to help dry the area which was not rubbed, only blotted. Also, often the area was exposed to air for drying effect, never left moist.

Oral antibiotics, used judiciously and intermittently, would help if there is secondary infection (which is almost inevitable). Silver containing cream too is antibacterial and would need compounding. High dose vitamin D, perhaps even a short run of 50,000 IU may be beneficial: it is felt to help with infections and was used in tuberculosis patients years ago. After a trial period of high dose Vit D, then further maintenance with 4 to 5000 IU may be of need: just make sure your blood calcium level is normal (not hyper or high Ca+). Hydrogen peroxide is also antibacterial: diluted on cotton gauze rubbed on the yellow tissue to disturb the old and let the new grow in is helpful although time consuming. A burn specialist consultation truly sounds wise. Protein supplementation I would think would be a must: high cell turnover demands adequate calories.

Flalady-if your old time oncologist won't give you chemo, then perhaps Tampa or Jacksonville or Gainesville might be good for a consultation. Surely there must be one oncologist willing to walk this road with you and I am so very sorry you are struggling so. If you wish me to get names of oncologists in your area of the American Society of Clinical Oncology website and get them to you I will be happy to do so. 

I hope you don't mind I posted this. It is so disheartening to see these struggles and yet Ring, your mom seems to be making headway which gives us all hope.

Heartfelt moments of support for you ladies on this Independence Day,

Tender

scamperwillow

I am doing some research for a friend diagnosed with IBC and just heard about this Hyperthermia at the VCI place.  What can any of you tell me about this treatment?  She is a young woman and recently diagnosed.  Would this be a good course of treatment for her?