Flalady Update

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  • vivre
    vivre Member Posts: 2,167
    edited June 2009

    FlaLady-I went to this alternative health expo this weekend and found this very interesting study:

    http://www.haelanresearchfoundation.com/summary_articles.html#article2

    Have you heard anything about it?

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

    I went to Mofffit (near by cancer clinic) and was told they did not feel they could help with so much skin involvement.  They did show me some exercise to help my frozen right shoulder.  This has helped my pain.

    I'm a little tired from chemo but not too bad. I'm just tryong to figure out what to do next.

    Flalady

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  • hollyann
    hollyann Member Posts: 2,992
    edited June 2009

    Flalady..I am just now reading of your current health crises....My heart goes out ot you as do my prayers.....Tender has some great points!.....I will have to consult with her int he future!..lol.....I have nothing to offer but gentle hugs and lots of love...If I were closer to you Flalady I would be at your home doing all you are forced to hire out and would never charge you a cent!......I think it is disgraceful that people would actually charge someone who has disabilities.......It is our Christian duty to help others and never charge a fee for it when someone really needs help.....I hope you get your disability very quickly...........

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  • suegeyer
    suegeyer Member Posts: 14
    edited June 2009

    Hi Flalady,

    Just wanted to let you know you are in my thoughts and prayers.  Our trip is going great but cancer is always on my mind.  I guess you can never get away from it.   Currently we are in MD at my daughters then to PA to spend  Fathers Day with my 80 year old Dad.  From there who knows.  Maybe Yellowstone.  Any sisters along the way????

    Sue

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Always glad to hear your voice, Flalady. I know you're very busy and probably tired too, so it's wonderful that you still post and give to us.

    I just want to post the following abstract; I believe I may have mentioned this chemo combo once before. I have Larry Norton's (MSK) paraphrased words ringing in my ears: "there is always another chemo for bc, you just have to find it"... Anyways, some food for thought for you and your doctors.

    J BUON. 2005 Jul-Sep;10(3):401-3

    Long-standing complete remission following mitomycin-C/vinblastine chemotherapy for cutaneous and lymph node metastases from breast cancer resistant to multiple chemotherapy and hormonal lines and extensive radiotherapy: an unusual case.

    Department of Oncology, Rambam Medical Center and Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel.

    "Widespread cutaneous and lymph nodes recurrence in breast cancer is regarded as therapy-resistant disease. We describe a 50-year-old patient who presented with treatment-refractory disease following multiple lines of chemo- and hormonotherapy, photodynamic therapy and radiotherapy, including re-irradiation to extended volumes of her chest, upper abdomen, back and regional lymph nodes. Following treatment with mitomycin-C (MMC)/vinblastine (VLB) alone, she entered sustained complete remission of 1-year duration without any side effects. A brief review of the current literature is also presented. The MMC/VLB combination might achieve reasonable response and improvement of quality life even in patients with advanced breast cancer."

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Good wishes to you today and onward, Flalady!

     Keeping you close in my thoughts.

    Tender

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

    Hey Tender,

    I'm doing much better with my pain. Come to find out I also had a frozen right shoulder.  We started doing exercises for it and the pain is soooo much better.  Still have swollen arm and we can't seem to move it but the pain gone is wonderful.  I have treatment number two next week.  I need to look for my next treatment if the neck does not response.  The tumors are becoming more visible through the skin and getting bigger.  The tumor on the skin surface are dieing after on treatment I just not sure about the deeper and bigger ones.

    On you last tx option post...did you see if this is available in the US in trials?

    Flalady

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    No, this was a recently published abstract that I thought may be helpful. I have heard once before that mitomycin-C and vinblastine was helpful in a breast cancer skin met situation.

    So sorry to hear about the frozen shoulder: yikes that can cause pain! I'm glad to hear the PT is working.

     Question: do you have an open-minded oncologist currently working with you whom you can rely on? I'd hate not to have one oncologist whom I know has my welfare on his/her mind.

    I'll take a look at the trials again at trials.gov and see if anything new has opened near you. You're looking for a small molecule inhibitor trial at this point or new chemotherapy trial?

    Big but gentle hug,

    Tender

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  • vivre
    vivre Member Posts: 2,167
    edited June 2009

    Prayers for you FlaLady. The trial Tender found sounds promising. I know you will do everything you can to check it out. You are so tenatious!

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  • vivre
    vivre Member Posts: 2,167
    edited June 2009

    Have you ever heard of this?:

    http://www.thedoctorwhocurescancer.com/

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  • Estepp
    Estepp Member Posts: 6,416
    edited June 2009

    I hope your weekend is pain free and lovely!

    Laura

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2009

    FlaLady, really happy about the shoulder pain relief! Still praying about swelling reduction.
    Hang tough!
    Binney

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  • havehope
    havehope Member Posts: 503
    edited June 2009

    Flalady

    I wish you an easy time and many hugs. You are in my prayers. Be strong and keep your hope. It will get better!

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

    Tender,

     None of my oncologist have a open mind right now. Well let's word it this way...none are willing to take anytime to do some research for me.  They don't want to treat for skin anymore. My voice is getting more horse and my cough is back.  I think I maybe having big issues in my neck. None of them seem to care???

    I will give this tx one more try if the neck does not respond I will have to look around more aggressive.  I really worry about travel with this arm and I have no one to travel with me. This could be a big problem.  Mayo Jacksonville no longer does Phase I trials because of the expense.  Yes the economy is effecting the medical industry.  I have to say for the first time I just don't have the heart to research...I'm just tired of getting shot down.

    Flalady

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

    Binney,

    We tried the new tape but my skin is to tender for much of anything. No compression wraps and no pumps.  But at least I'm not in so much pain.  I think some of the redness is just poor circulation because of disease and LE.

    Flalady

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  • Tamara1201
    Tamara1201 Member Posts: 70
    edited June 2009

    FloridaLady, what part of Florida do you live in? I live way up in the Panhandle, near Panama City, but if you are anywhere near me I would be happy to help you in whatever way possible. Florida is a big State though, so I know you could be far away. Good luck, I hope you find the support you need

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  • hollyann
    hollyann Member Posts: 2,992
    edited June 2009

    (((((((FLalady!)))))))))))Hope it gets better for you......

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

    Tamara & hollyann thank you so much..

    Tamara we are far apart. I'm near Lakeland/Tampa.  But thank you sooo much for the thought.

    Flalady

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    I hear you, Flalday. You are legitimately fatigued and burned out: you've done a stellar job keeping things under control through you're own research and will power, aided by your main oncologist. Since you're wearing down, I'm wondering if turning to him again is the most logical thing to do. Perhaps he would reconsider chemotherapy at this juncture, to reduce tumor burden and let your own immune system kick in. By not working daily and traveling two hours minimum when current treatments are done, you can rest. Rest, sleep, good diet, less tension, some help locally while the research and approach is further defined.

    I am checking clinicaltrials.gov. Regrettably, the one immunotherapy study I saw as interesting is as NIH itself. But, I did see that bleomycin (a relative chemo of mitomycin-C) was again mentioned in breast cancer skin metastasis in one of the listed trials. Maybe you might talk with your local oncologist about this after current trial is completed and you rest some? I also saw the troll small molecule trial, but not in Florida-drat. I'm curious if Tampa has anything going or about to start or Miami, or Jacksonville.

    Of late, the potential medicinal use of silver (Ag) is getting more public and private press. While searching the trials I came across this Tiawanese trial and thought I would share it:

    "AQUACEL Ag. silver-releasing dressings: Experimental

    Silver, in its common ionic (active) form (Ag+), is particularly attractive as an antibacterial agent because it can be readily incorporated into dressing materials. Silver-dressing are wound products designed to control infection and provide a wound environment conducive to management exudates, pain, and malodour.
     
     
    Perhaps you can get a compounding pharmacy to mix some up if your doctor approves.
     
    I'll keep looking and thinking. I am very sad that your mightily alone at this time. I hope you continue to look forward, and know that we have your back. 
     
    Your friend,
    Tender
     
    PS: when searching on trials, I've expanded my search terms to offer more ideas,creativity.
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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2009

    FlaLady, I'm just so glad to hear about the pain relief. Thanking God, and asking him constantly for more complete healing. Also for a doctor who will hear you, really hear you. I wish you were here so I could introduce you to mine. There is goodness and grace out there, and I'm praying you'll find it.

    Prayers tonight for a good, healing sleep,
    Binney

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Wondering how you are tonight, Flalady.

    Florida has been beastly hot, with late afternoon rain. Makes for a muggy time of it.

    Don't know where you are in your treatment now: maybe today was one?

    Just wanted to check in and let you know I'm thinking of and praying for you.

    Tender

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  • hollyann
    hollyann Member Posts: 2,992
    edited June 2009

    FlaLady, great big cyber hugs to you, sweetie.......Hope you feel better soon........Sweet dreams and be strong......

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

    Treatment #2  Thursday. Not a good start to the week. My pain back in the right shoulder, now have LE around the stomach and cancer is growing in the skin on my back and my hair is coming out.  I had my Muga and the stuck my feet four times to find a vein today. I was in unbelievable pain laying down for the scan.  I told the trial research nurse that if I don't get more response in my neck this tx I quit!  I had me a good cry this afternoon and it was a long time coming.

    Tender,

    All of us Floridian's are even saying we don't remember it ever being this hot. I can't sweat so this heat is really hard on me.The nightly thunderstorm have arrived and this is good and bad thing...

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  • baywatcher
    baywatcher Member Posts: 532
    edited June 2009

    FL Lady,

    Your cry was well deserved. No one should have to go thru what you have endured.

    I believe that we have set a heat record in Florida. I hope your air conditioning is working well. You are in my thoughts.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Tonight I heard an update on some of the exciting responses which has been obtained in BRCA 1/2 breast, ovarian and prostate cancer triral patients using PARP inhibitors. I know one of our own forum members participated (CalGal) but was unsuccessful.

     BRCA carriers cancers have their own mutated DNA. There are currently at least five PARP inhibitors in clinical trial development. Recent in vitro and in vivo evidence suggests that PARP inhibitors could be used not only as chemo/radiotherapy sensitizers, but as single agents to selectively kill cancers defective in DNA repair, specifically cancers with mutations in the breast cancer associated (BRCA) 1 and 2 genes.This theory of selectively exploiting cells defective in one DNA repair pathway by inhibiting another is a major breakthrough in the treatment of cancer.

    (Ann N Y Acad Sci. 2008 Sep;1138:136-45)
     
    So, anyway I was looking again at clinicaltrials.gov, searching under breast cancer and PARP inhibitor trials. I came up with one which may be a possibility flalady, if I'm correct that the multiple "ors" allow advanced local unresponsive triple negative patients. And if by extension to your back which you mentioned just occured and your full arm that you are no longer classified as recurrence chest wall local. NCI has a patient stay facility. 
     
    I thought you might like to look at this. The science director tonight indicated that some non-BRCA 1/2 breast, ovarian, prostate may also benefit, but that the degree is currently being studied.
     
    Here is the clinical trial information:
     
    AZD2281 and Carboplatin in Treating Patients With BRCA1/BRCA2-Associated or Hereditary Metastatic or Unresectable Breast and/or Ovarian Cancer
    This study is currently recruiting participants.
    Verified by National Cancer Institute (NCI), June 2009  NCI NCT00647062
    First Received: March 28, 2008   Last Updated: June 11, 2009   

    		 

    		 
    r:     		 
     

    http://clinicaltrials.gov/ct2/show/NCT00647062?term=PARP+inhibitors&recr=Open&rank=3

    Perhaps too there will be more PARP breast cancer trials opening soon around the country both to BRCA 1/2 and nonBRCA 1/2 patients, given the recent response with tumor shrinkage by some patients. 

    Here is hoping today was not too tough for you, Flalady. It's a hot week in general.

    Hug to you,

    Tender

    Wow: sorry about the mess of a post, yet I can't get delete all that junk inbetween for some reason.

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

    I finally had my brac test done. I'm brac negative.

    Thanks for the search.

    Flalady

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  • Yazmin
    Yazmin Member Posts: 840
    edited June 2009

    Flalady: you really are one-of-a-kind. Indeed, Tender covers it all. I look forward to hearing from you again, though I realize it is hard for you to type.

    Hugs and lots of love.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Hi Flalady,

    I am just sending a note so you know I care (I'm sorry I haven't been on here for a bit!).  I am happy you have a bit more comfort, and pray for the doctors who are treating you (that they have knowledge and skill, and most importantly, patience). 

    Love and prayers, Deb

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  • hollyann
    hollyann Member Posts: 2,992
    edited June 2009

    Hi Flalady......Just a note to send you a big cyber hug!.......

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Friday night, with the sun streaming in the windows. Hot here and hot in Florida. That's summer! As I often do on Friday evening, my thoughts turn to you. You probably had a busy week and are looking forward to some quietude.

    Maybe put on some good tunes, listen to some MJ if you liked him (I'll link one of my early favorites he did called simply "Ben"), some ice in a tall glass for lemonade or your pleasure. I'm about to do the same, so will be thinking of you...

    Tender

    http://www.youtube.com/watch?v=cwAmpn81SVO

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