Flalady Update
Comments
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FlaLady and Binney,
I am wondering, since travel is tough, if Flalady might benefit from one of those pumps which she could perhaps use during the daytime and as Binney says,maybe the vest at night. I don't know much about them but am wondering?
Tender
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Hi Ladies,
I afraid I may have bigger problems...last week I notice below the elbow a area that was turning red than purple when I took off my sleeves...I have this at the top of the arm and thought it was my disease under the skin. I'm not so sure now. Of course my doctor is not in on Mon/tues to travel to the FDA so I saw another radiologist/oncologist. What a jerk and he will be the doctor that does the Thermdox trial. First he wanted to know why I had not come to see him first before doing Hy/rads. Than he told me twice I would not be eligible for the trial because I've have not completed enough other treatments. I really wanted to slap this guy. he did not listen to a thing I said. I don't think he even knows what this looks like so he told me to wait until Wednesday and see my other doctor at the clinic. I'm a little worried about waiting this long my arm does not look good. It a little hot but not bad...but it is very painful. Also worried if I should do hyperthermia on this side tomorrow. I can't believe how many problems I'm having with this clinic and my health. I've gotten spoiled in the last few years with such good care.
Not starting the week off very good....About the vest ...my insurance would not pay for it. I looked at off the shelf ones and they did not fit around my shoulder/arm area very good..did not come up high enough. I've really thought about the pump to get this stuff off my back. I think this is my problem. If it does not move out of my back as soon as I lay down or even during the day my arms fills right back up.
Flalady
Should I wear my sleeve on this arm or wait until Wed and see the doctor?
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Wow, just fixed my Firefox and came on to your thread.
No, Flalady, I would not wear any compression garment until the etiology of the red/purple regions on your arm is determined. One thought is it repressents blood flow interruption to the skin: maybe a pressure necrosis-like event. If this is the case, further compression may worsen the situation. Sorry that means more potentially more fluid in your already heavy arm. One other thought is infection: you say it's in two different areas, so this makes me think this is more unlikely but if this worsens or you are in pain, have fever, see more why don't you head to the ER and let them runs some tests and have a good look by a vascular surgeon at it?
That's a real shame about this new doctor. You'll have to see if you really feel comfortable with him, given his attitude.
I'm just going to post this now, in case you wish to be seen for another opinion yet today.
((Hugs))
Tender
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Ah, FlaLady,
No compression until you're sure it's not infection. Lie down and elevate as much as possible, but no massage or compression. If the pain increases or the colored areas spread, don't wait to head to the ER for antibiotics. This stuff can spread fast. If it's possible to outline the colored areas on your skin with a permanent marker, that might help track any spread. Don't do it, though, if it'll irritate your skin. Do drink plenty of water and stay well hydrated.
And keep us posted!
Hugs, prayers,
Binney -
FlaLady-Have you tried the compress of castor oil with heat? My prayers are with you, as always.
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vivre,
I've tried this and the past....with no real help. My area is just to large now.
Flalady
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FloridaLady: Lots of healing hugs coming you way. I think it is interesting that you have conducted so much research. I had a good friend with a rare form of cancer that was told he would not have anywhere near 5 years. He took a very pro-active approach to his cancer, read everything he could get his hands on and discussed everything with his team of doctors. He always said being right there in the middle of his treatment, armed with research saved him. He went on to live 20 more years and died of a stroke. So lots and lots of hugs.
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Wonder how you're doing Flalady? Any lessening of intensity in the areas of your arm?
I'm thinking of you. Thinking too what to make of the new Dr. X, who didn't listen.
I'm sure you'll check in tomorrow or so.
Hope the rain is gentle in your area.
Tender
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flalady, I am so sorry to hear how bad the LE is for you right now. I'm so glad binney is here to share her knowledge. {{{{{{{{{{{{hugs to flalady and binney}}}}}}}}}}}}}}}
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More bad news today....they think it is breast cancer growing the length of my right arm in the skin! They want to watch and not do a biopsy because this would just make the arm worse. OMG I can't imagine watching this come through my arm and having everyone ask me what is that? It's bad enough it's up to my neck and I can only wear high t-shirts.
Since my disease is on the move even more we stop rads/hyper today and I will see another new doctor (not the jerk!) Friday. They still think I should to the thermdox trial but concern they will be only treating about 50% of diseasel.. The trial only allows treatment of two zones. I've got five zones. The heating is making me LE worst so these is another concern. The big difference is I will be heated only once every three weeks not daily. I will wait and see what this doctor says. I just can't believe there is nothing to slow the damn thing down!
Flalady
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Sending prayers your way to slow the d*mn thing down! Hugs Joann
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Flalady,
Might you ask the FDA pharm researcher about Rapamycin? It's felt of use in quieting a pivotal progression cancer path called the mTor pathway. It seems Rapamycin reverses some of the multidrug Resistance pathway in cancer.
A natural way to alter this pathway is through high Glutamine intake and limited Leucine and Arginine. The latter are found in meat, nuts btw, and maybe one of our Natural Girls friends can suggest a high Glutamine diet. It is available by supplementation.
Please ask about this. I'll look a little more at it too, but it may be one way where you can right now lower the pace of spread.
As always, you are greatly in my thoughts.
Tender
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Fla,
Cam is getting scans today, if it is working as well as I hope it is, I may come get you and drag you into this trial. Her skin exploded in rash and such in the week waiting for trial to start. Now It is slowly, slowly receeding. Does not cause problems, has not come close to breaking thru skin. Just changing from bumps and thickness to more vericose looking areas..no discomfort.
We pray for you to find an answer quick...keep us updated.
Herbie and Cam
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FlaLady, So sorry to hear of this latest setback......You are in my thoughts and prayers.....
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Tender,
The trial that Cam is on, is the mTOR inhibitor trial..it uses a Rapamycin type drug as the mTor inhibitor and a new drug, IMC a12 as a Insulin like growth factor inhibitor that keeps the cancer from building a resistance to the mTor inhibitor...(one of the problems with rapamycin)..
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Ibcspouse, well I did not know this! Yes, insulin-like growth inhibitor is a well appointed complimentary drug.
Any ideas how we can find out if it is in Flalady's area? Maybe a picture sent privately may show the improvement. Pictures often say more than words.
I am happy for Cam and you, and I thank you for pointing this trial out to me.
Best to all,
Tender
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Tender, we have been working with Flalady's, it has been in her area, at MAYO, but is on hold now and there, they have a two type chemo limit, on it. I know her feeling and experience here at MD Anderson, in phase 1, so I am trusting her to find something..She is way smarter than I am.
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Hi guys,
I have tears in my ears at your concern for me...this last month is pushing to the wall. Knowing you guys are out there give me strength.
I asked my local and best oncologist about Rapamcyin and he said he did the trials in 2005-06 and was disappointed. They made it all the way to Phase III for hormone positive. I asked if the key was this 2nd drug IMC-A12 and he said it has to be... because alone they have proof it does not work. Of course he can not get this part of the trial.
Herbie,,,Do you think there is a way to see if I'm eligible for this trial without having to do it in person? Someone to talk too? Are there spaces still open? I hope since I've been there before I could cut some red tape. I have fourteen days to wait for the trial here any way. My only hope is that Cam and I have been so much a like in our disease progression that this has a higher chance of helping me.
Heck...if MDA can clear what is in my arm...I'll kiss the ground it sets on!
You may need to find out about my solid tumors in my neck also...I don't know if you can have solid tumors or just skin mets.
God Bless you all
Flalady
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Fla, We see Dr Moulder tommorrow and Dr Christofanilli also..I will ask her, they will have some evaluation on Cam then, so hope so.. This Trial with her is generic in dx...so I think you can qualify..the only thing is they are doing only 24 to 26 people, don't know if full yet or not.
I will advocate for you, and do my best to get a good answer or have her check with moffitt..and see what she can get you there.
God Bless you.
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Flalady, holding my breath and praying this new avenue will open up for you, and quickly,
Binney -
Please understand my interest is to help by posting the below MD Anderson trial on IMC-A12, fully respecting this thread is entitled "alternative therapies". However, since IMC-A12 is being discussed, I searched for you, and it appears this trial is less restrictive and appears open. Temsirolimus is an mTor inhibitor, so it appears to be the trial ibcspouse mentions. It will at least allow you to have some specifics.
IMC-A12 in Combination With Temsirolimus (CCI-779) in Patients With Advanced Cancers
This study is currently recruiting participants.
Verified by M.D. Anderson Cancer Center, April 2009First Received: May 14, 2008 Last Updated: April 3, 2009
http://clinicaltrials.gov/ct2/show/NCT00678769?term=IMC+a12&recr=Open&rank=5
My very best to you all,
Tender
Edited: regarding mTor
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Tender, that is the trial Cam is on, I may have been less than clear in discribing it, but it is the one. The restrictive trial I was referring to is Mayo was doing the same trial (same drugs and same protocol) for LABC only..that is the one that had the restrictions. Tomorrow, Cam's completes the 2nd cycle...8 treatments of Temsirolimus & IMC A12. So the research nurse, Phase 1 Doctor, and Cam's regular Onc will all be avalible.
PS also some recruting for this is being done at Kent State
They have changed the listing of IMC A12 from a drug to a Bio/vacinne.
Also, would it be OK to talk about it here if I capitalized the letters in C A M 's name
Herbie
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Hugs and love to you dear lady. All my prayers are with you, hoping that maybe you can get to Texas and get the same treatment, with the same results as Cam.
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Thanks Tender and CAM
don't worry about the alternative location of this thread...by buddies understand I have to do conventation treatment and will learn from your post as I always have.Alternative buds...notice the use of insulin (sugar) as a drug carrier?
Thanks Herbie and will be waiting for you to post me soon. I found it at Wayne State Univ in Detroit (downtown) no thank you...rather go to Houston. I'll check Kent State lead.
Hugs and blessing to you all.
Flalady
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Flalady
Not the best of news, there are no slots open in the trial Cam is on. Even talking to Dr Christofanilli he is enthused about the results with Cam and wants to get someone else in the trial with similar symptoms to verify results, but in doing an amendment to the trail, it would be a few months before they could open it to more people. He did say a new trial is starting next week on another inhibitor that he is excited about. I am trying to find info on it, but with it just starting, they will be minimum doses with escalating amounts.
On Cam, she may get taken off trial, which will be a fight. Her PET scan showed minimum uptake in right breast suggesting an early recurrence. The skin has gotten much better. The protocol says any progression, you are off the trial. The problem with this, is since she could not have surgery, she has always shown some uptake on PET in breast. It depends on the Radiologist as to how it is interpreted. Some read stable, some read minimum uptake no apparent disease, some say extensive carcinoma, some say consistent with primary tumor. Cam will have an US tomorrow and it depends on that. Dr C who reads his own patients PETs says there is no progression. So I guess we will find out tomorrow.
I know that last paragraph is confusing but it is hard to explain. Cam has had at best count 10 PET scans in the last 15 months, so I have seen have different radiologist reports.
Deb, I will find what the new trial is, It is for IBC. You are in our prayers.
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Well...ibcspouse I've prayed that if it was not a good thing for me to go to MDA that the door be closed before I run all over the place trying to get thing together and travel there and be dishearten. Thank you so much for checking this out for me...it was a blessing that you were there and could do this for me. Not what I wanted to hear but it was better hearing it from you.
As for Cam don't dishearten...I had mild progression and they let me stay it my trial out there. I'm with you...who cares about a small spot in the breast when you our control skin mets so easly with low side effects...this is a IBC patients dream!
My neck is becoming very painful and the thermdox trial does work wonders for neck tumors. So hopefully this will be true for me and I will continue to watch the trial to see what happens.
Thank you so much for being there for me. Hug Cam for me.
Flalady
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Flalady, you are one amazing, inspiring person. Thank you, thank you for being you, and for being so faithful! God promises only good to those who trust him. Looking forward to it with you!
Binney -
I hope the sun shines this Memorial Day weekend and you may feel the warm healing rays for a bit. I know with LE we're suppose to stay covered, and again if you're undergoing treatment, but the shine on your face is good for you for a brief period of time.
This wait must be very trying, and then too the issue of infusion. I hope the different new trial doctor is really thinking of how to get this done right. Two week countdown, and I'm marking off the days.
I'm glad you are staying focused on faith as it re-focuses from ill to trust.
I join you too in hoping Cam's radiology report allows continuation with Dr. C's study.
Veterans coming to town now in my area, with the famed motorcycle ride on Sunday. It always makes such a poignant impression, and is so needed in these days of war.
((Gentle hugs))
Tender
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FlaLady - hope you have a restful weekend. Sending prayers your way for strength though your treatments. Hugs Joann
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Well, I was looking around some today on skin mets and breast cancer and came across a just published oral chemotherapy combination used on a Japanese breast cancer patient with success that frankly I had not heard of. I'll post the abstract below: please note this patient was hormone +, and thus treated with Arimidex additionally. Here is an interesting oral combination regimen which was effective in breast cancer (as it is apparently against other cancers), and apparently one with skin mets. The regimen does include low dose cyclophasphimide, long used in breast cancer.
I remember Dr. Norton saying here on bc.org on an Ask the Expert metastatic conference, "there is always another chemotherapy against breast cancer, you just have to find the right regimen against your tumor" (paraphrasing here). Oral chemotherapy has such an ease of administration advantage.
Here is the abstract:Gan To Kagaku Ryoho. 2009 May;36(5):819-21.
Sakurai T, Umemura T, Jinta E, Suzuma T, Yoshimura G, Shimizu S, Sakurai T.
Dept. of Surgery, Wakayama Medical University Kihoku Hospital.
We report an 89-year-old patient with recurrent hormone-responsive breast cancer who presented with pleural, skin and bone metastases. Nineteen years previously, she had undergone a mastectomy and then for 16 years received adjuvant hormone therapy. The patient was orally administered a combination therapy of anastrozole, UFT and cyclophosphamide. A remarkable response was seen after 5 months, and no side effects were observed. The patient became well and the treatment was continued without relapse at 8months. Oral anti-cancer treatments in combination with hormone therapy appear to have few side effects and might be an effective treatment option for recurrent breast cancer patients.
UFT stands for Uracil/Florafur, and also is known as UFUR. Flurafur also is known as Tegafur. To read more about the chemical interactions of these drugs and their synergism, you can cut and paste here to an Oxford Journal report on these drugs. Leucovorin is a folinic acid, and used as a rescue drug.
Oral Uracil/Ftorafur (UFT) Plus Leucovorin as First-line
Chemotherapy and Salvage Therapy with Weekly High-dose 5-
Fluorouracil/Leucovorin for the Treatment of Metastatic Colorectal
CancerThis combination has been studied in colorectal cancer. Yet the skin mets which responded in the recent breast cancer patient abstract drew my attention as they can be difficult to control.
As to dosage in studies I found one specific regimen again in the above paper:
oral UFT+LV (tegafur, 300 mg/m2/day and uracil for 28 days in a 1:4 molar ratio plus leucovorin, 90 mg/day orally for 28 days, each 35 day cycle x 5).
I post this because as all of you, I wish chronicity in breast cancer treatment, and because open mindedness in treatment based on published evidence strikes me as as sound. I know you're beginning your hyperthermia and low dose Doxil regimen and I'm very hopeful it will do the job it's intended to do. It's always nice to have a little something on the back burner too....
Are you getting rained out, Flalady? Any flooding? Bit of Gulf of Mexico low these past days, causing heavy rain in Central Florida and beyond.
Thinking of you Deb,
Tender
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