Hyperthermia For Chest Wall

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    As always Tender thank you for  your support and time you invest in my struggles.  Gg08 God bless you.  It's terrible that we have to think of how we want to die.  I'm hoping for anything but skin mets. Doctor's and I do mean the last four will not make any recommendation on skin care!

    I'm going to try and get a appt with my local onc over the next two weeks.  I can not travel at this time again.  Traveling took way to much time and stress that I felt it hurt my health more than helped me.  I don't want to travel anytime soon.  I may check with Moffitt in Tampa but it not my first pick of a place to go.  My local onc can do anything and sometime more than this cancer clinic can do.  My local clinic is under the same research umbrella and share info.

    As for skin care they sad my needs to get worse before using any wound care.Again wait and let your body fight it for a while thought process???  I did try Rings recommendation of saline/hydrogen peroxide and made a pack and let it set on my skin for about fifteen minutes. It looks a little better today.  I will up my VitD because when I was last tested it was low.  I will try the blow dryer ideal.Ring also just told me about this. I have to cover up my open places during the day becuase I'm destroying all my shirts with stains. 

    Another sister on here told me about honey...you should see all the stuff of this. I'm going to research more.

    Thanks again ladies and God bless

    Flalady

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  • scamperwillow
    scamperwillow Member Posts: 2
    edited July 2009

    Hi all,

    I have seen the VCI web  site, I was looking for some first hand objective infomation on how their treatment works.  Any observations from people that have actually gone there.

    Thanks,

    Marty 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    scamperwillow

    PM RingUsa she has her mother there and is very helpful. Her mother is fifteen years out and they now can not control her disease with chemo. I did this locally and throught a cancer clinic.  I did not see a response fast enough so I had to move on to another treatment.  Mainstream medicine will not treat this way unless you failed standard treatments.

    Flalady

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  • RingUSA
    RingUSA Member Posts: 20
    edited July 2009

    Hi,

     Just an update on my mom and her care at VCI.....

    She has been treated at VCI in LA for about 2 weeks now. It seems like the care there is pretty good. The ladies who do the treatments are very caring, compassionate and optimistic about her recovery! She sees a doctor once a week unless we request to see him more often. VCI has arranged for a nurse to come to the home daily to care for her chest wall situation. It has been very helpful - she has been teaching us some new things. We didn't use gloves - seems so obvious but we just didn't think about it. We are now using sterile everything... also important! The nurse communicates with the doctors at VCI whenever necessary - they have us using a new cream (Collagenase Santyl ointment 250 mg) to break down the yellow coating -  The coating is beginning to fall off and the tissue underneath looks healthier. 

    It's still too soon to know if the hyperthermia treatment will work for her. I only wish we began them when the conventional doctors were First finished with her - instead of waiting until it spread on her chest. I didn't know about this treatment earlier... I would also be open to using this in conjunction with chemo - had we known about it then. I spoke with a woman (at VCI) yesterday who is also battling breast cancer. She didn't tell me the kind - but said in 4 weeks her tumor is reduced. She is very pleased with the treatment. As I hear more about successes or failures - I will post it here. I think it's important that my mom has all of us to really push, ask questions, and encourage them to do all they possibly can to help her. Not that they don't want to, it seems that they are very busy and my mom would not typically speak up and may get a little overlooked!

    This is all for now. For anyone wanting to know more, feel free to PM me.

    Blessings to all of you.

    Gail 

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  • TonyaB
    TonyaB Member Posts: 227
    edited July 2009

    Ring,

    I had hyperthermia with radiation done at UCSF in San Francisco. I had it for IBC to my chest wall. It worked very well but I just had the rash, no open sores. I believe they also do it with the chemo. I had Dr. Hsu and felt that he was very good.

    I believe I have his number around somewhere. Please PM me if you need to know more.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Ring,

    I just was thing about you today.  I'm so glad you piosted because I always learn something from you.

    TonyaB

    How big of a area did you have treated with hy/rads?  I'm glad it worked for you.

    Flalady

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Ring

    I did a search ion collagenose and could not find a lot of info and what I did was in a foreign language??  Could this be from Mexico?

    Flalady

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited July 2009

    So is hyperthermia and Doxil with Radiation for mets only? I am post mastectomy and facing radiation and I have read some studies about twice a day radiation working well for IBC with increasing rads (as tolerated).  The study said it was good for those that did not have complete response to neoadjuvant chemo and were under 45 years old.  Any thoughts? Also..I am new to the site and haven't heard of VCI in LA....does it have an IBC clinic like at MD Anderson in Texas?  I live in Washington State....thanks 

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  • RingUSA
    RingUSA Member Posts: 20
    edited July 2009

    Hi cwrightn

    Not sure that I'm the best one to answer your questions but I'll tell you what I've learned. Hyperthermia is not just for mets. I am seeing many people at VCI being treated with hyperthermia for all types of cancer.  they are using it in conjunction with low dose radiation. I'm not sure about the Doxil. I can comment on VCI - I would not compare it to MD Anderson or Stanford type facilities. We have been taking my mom there for a little over 3 weeks. If you want to know more specifics - you can send me a personal message. It looks like UCSF also offers Hyperthermia - look back to July 11th posting by TonyaB - she went to UCSF. 

    Someone else will probably know about the Doxil and answer you in a day or so. This site has been very helpful to me - I hope it helps you too.

    Blessings,

    Gail 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Doxil with hyperthermia is only being used in Phase 1 trials right now.  This means you have to fail treatment with multiple chemos.  The trial is called Thermdox and is on clinictrials.gov for more info,  VCI is not a "cancer clinic" this is a alternative cancer center.  Research Valley Cancer Institute...because of this they do not require you to fail multiple chemos.  You need to make sure your insurance will pay for this, also you must stay on California for months. 

    I had to stop my trial because I had to much disease to treat, but I do believe this does have value from what I seen also.

    Flalady

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  • RingUSA
    RingUSA Member Posts: 20
    edited July 2009

    Flalady is right! You really need to make sure your insurance covers at VCI or anywhere prior to going there - This is our problem at the moment -  After arriving we found out our insurance will only cover one hyperthermia treatment per day. It's just not enough - we can see the cancer spreading on her chest wall, stomach and under arms.....  We would have to pay an additional 950.00/day to do an extra hyperthermia.  If you are considering coming - make sure your insurance will cover two treatments per day of hyperthermia or strike your deal prior to your arrival. Many patients are receiving two treatments per day- 

    My mom is really struggling at this point. This cough is not going away and there is concern that it's the cancer spread to the lungs. They will do another chest ex-ray and drain the lungs again next week if needed. She is now on a nebulizer, using Albuterol and an IV at home. She is having something called TPN  because she is not able to eat normally since the radiation has caused nausea and an irritation in her esophagus.

    I must say that I am now so thankful for all those rounds of chemo - as awful as they were - they kept her going. Now that we are out of chemo options - I only wish there were more for her. The chemo kept her going for years! If you have hesitation about chemo - like we did... just remember without it you may not be around to complain about the side affects! (words of wisdom from one of our oncologists!)

    I'm still thankful that we are here and my mom is being treated at VCI - we just need to figure out how to get more treatments w/out paying 5,ooo. per week. If anyone has any suggestions - I welcome them! My mom has medicare and supplemental Blue Cross.

    Bonnie - thanks for your prayers! I hope you are doing well...

    Has anyone tried the Betadine  or silver cream as mentioned by Tender a few days back?? I'm wondering if I can do it while using the Santyl cream??

    Again, prayers for all of you ladies.

    Blessings,

    Gail 

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  • RingUSA
    RingUSA Member Posts: 20
    edited July 2009

    We are back at it again, researching to find more treatment for my mom. For some reason and I can't figure out what that is, VCI is limiting her  hyperthermia treatments to one per day.(it doesn't look like an insurance issue or an FDA issue as suggested by VCI)

    We are now looking to move her to another facility that will treat all of the areas. It seems like we are making progress in the area treated but I am worried we are losing the battle because it is spreading faster than it's being treated.  Any suggestions??  

    I am wondering if anyone has experience or knowledge about Pacific Radiation Oncology Center in Orange County, CA?

    The Santyl cream is still working very well. It has removed most of the yellow layers and has also reduced the odor!  

    I feel a little desperate and am looking for any advise, direction or suggestions! 

    Sincerely,

    Gail 

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  • RingUSA
    RingUSA Member Posts: 20
    edited July 2009

    Bonnie, we never tried hyperbaric. We heard it may help with the sores but her problem is much bigger than the sores. She went downhill really quickly this week. Monday night we took her to the emergency room because of sever water retention and her breathing was not good. She has an infection somewhere, my guess is the lungs. MRI shows cancer has spread to lungs and bones. It has been a very difficult week but also very sweet in that the Lord has given us time. She openly turned to the Lord. She has always been kind of quiet about her faith. Yesterday, she was seeing angels and Jesus in her room. We are just praying for peace and comfort for her and all of our family as we are very close and she is dearly loved.

     I have a few more insights on the skin care... After seeing an infectious disease doctor, we changed back from silver cream to Santyl cream. Maybe we didn't use the silver cream correctly?? The yellow thickness developed in two days while off the Santyl on on the silver cream. Back on Santyl,  I was able to get it back to a fairly dry state in two more days.  She also advised flushing it with 1 part betadine to 10 parts sodium. This will help keep the infection down. We were able to manage the odor and the infection on the skin. The oral antibiotics also helped.

    May God bless you ladies and I just pray for a cure for this terrible disease.

     I haven't seen any recent posts from Flalady - anyone know how she is doing?

    Blessings, Gail  

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  • RingUSA
    RingUSA Member Posts: 20
    edited August 2009

    Another update....

    My mom pulled through!!!! We were able to bring her home from the hospital after coming so close to losing her. She is gradually getting stronger - it looks like they got the infection under control. Her chest wall has improved dramatically!  Flushing it with gentle water in the shower and the Santyl cream have helped so much. The odor is totally gone. It seems that the radiation and heat treatments (Hyperthermia) may be working- at least on the outside and we will have to wait for further testing to see if it's helping the lungs. The lymph nodes in her neck are softer and smaller. She is still on oxygen, breathing is compromised by some activity in the lungs, but she is back to eating and drinking. She is a real fighter and we are so thankful to still have her with us.  Although her quality of life has improved, she still has a long ways to go!  Let me just encourage you ladies out there.... make sure you find yourselves a good wound care nurse - it makes a huge difference! With antibiotics and proper cleansing and dressing changes, the odor does not have to exist!

    Take care... Gail

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited August 2009

    Gail:

    I'm so glad your mom is doing so much better.

    Hugs

    Laura

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  • RingUSA
    RingUSA Member Posts: 20
    edited August 2009

    Hi Ladies,

    This is quite the roller coaster.... my mom is having a difficult time. Not eating, has lost 12 lbs and is not down to 95 lbs. She is weak and has very labored breathing. They have been giving her albumen IV's for about 2 weeks now. It's a form of protein supplement since her body is using muscle. Yesterday they prescribed Marinol (a derivative of Marajuana) It did increase her appetite, stop the nausea, improve her mood - more carefree. She was awake all night and very dry mouthed. I broke the pill open this morning and gave her just a portion of it....

    It's still not clear what is happening with the lungs. We asked to have fewer treatments of hyperthermia and radiation - since she is so weak. They cut them back from 5/wk to 3/wk.

    The good news is....She still has no pain and the chest wall looks amazingly well! 

    Any suggestions on the breathing problem/ constant cough and the sleeping problem would be greatly appreciated.  Also, does anyone have experience with Marinol? Maybe she will get used to the feeling of it - but so far she really doesn't like it.

    Prayers for all of you,

    Gail 

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  • RingUSA
    RingUSA Member Posts: 20
    edited August 2009

    Hi Bonnie,

    They really don't comment on what they think is going on, it's a little frustrating. Her lungs are clear, they said her breathing is bad because she is weak.  Our next step would be to have a feeding tube put in her stomach - it's a small surgery.... i really don't think it's the answer. It feels like it would make her stronger so she can endure the cancer longer? I don't know, it's just confusing... It almost feels selfish to do something like that.  The humidifier sounds like a good idea... maybe it will bring some comfort to her.  We do have her propped up with pillows and yes that helps a lot.  

    Yeah, the Manitol... i think we could all use some!

    Thanks for your ideas... and prayers.

    Blessings,

    Gail :) 

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  • Dmaxmama
    Dmaxmama Member Posts: 9
    edited August 2009

    If anyone is trying to find a hyperthermia treatment facility, google  "Hyperthermia Manufacturers", one of the largest companies has a very well done web site, with a list of providers.  There are several in southern Ca, and a couple in northern Ca.  I have done this treatment for more than 20 years, and have seen some really excellent results.

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  • RingUSA
    RingUSA Member Posts: 20
    edited August 2009

    Hi Dmaxmama,

    I just saw your post today. I went to Hyperthermia Manufacturers but am not seeing a large company with providers. Any chance you can send me a link? You can send it privately if needed. I live in N.Ca and am in S.CA with my mom who is getting treatments. Would love to do this from home if possible. We are seeing progress on the outside, not sure what is going on inside. Doctor told us today that it's only been 2 months, not long enough to do a CT scan to check internal progress. Any advise would be greatly appreciated!

    Sincerely,

    Ringusa 

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