Flalady Update
Comments
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Thanks I'll look more into this. Yes...I think we may need to buy a boat. Such a Florida thing from drought to never ending rain. The county will not left the water restrictions here yet...we can water our lawns, wash are cars or anything else for the last few months, One good thing is we don't need to water our lawns.
Flalady
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I meet the new oncologist who will be running this trial of Friday. Overall I like her. My one big issue was her thoughts on the Brac gene test. After four years none of my doctor ever really saw a need to do this test. I just don't feel it has value for my sisters. Me with aggressive disease put's them at higher risk, but there is no proof people with this gene do get BC at a higher rate. This test does not have standards yet and is so new there the data does not track but 10% of bc ladies. Even smaller amount of non-bc ladies who have tested positive to see what will happen in their life time. Family bc is only 12% of breast cancer patients. I've seen many with aggressive disease and test negative. My bc surgeon says over weight and life style puts you more at risk than this gene. Any way... come to find out the last doctor I was seeing at this clinic did get this approved. Why? It would not change my treatment options? The other thing that she said I did not care for is maybe why I'm doing so well is because of the supplements and that is why the cancer does not die. I had to bite my lip...and did not ask her what chance was it that any of these chemo would have done anything more? My other oncologists are very pleased with my over all health and state of my disease.
The doctor and trial nurse said they were embarrassed that I knew more about the trial than they did. I had to explain the trial workings and when I could start. Not a good sign... The trial nurse said she would study up this weekend. She was very nice by the way. Not pushy.
I now have to get a whole lot of test ran in a very short time to get into the trial. I really mad again they will not let me do them at my local clinic. None of the blood draws can be done locally and that means I have to drive 150 miles for blood work? When does this become about the patient? I've just completed two CT scans (a week apart) and heart, both have to be redone why? She told me to call next Wed to start scheduling...don't see how all this is going to get done and results back in two weeks. Not at this clinic.
Test
Two skin biopsies - these just makes these skin mets worse & again at end of trial.
CT Scans, Bone Scan, MUGA - Again every two months. I truly wonder why I don't glow in the dark.
Also said I can't take any supplements, vitamins or over the counter drugs. We will see how I feel about this after starting treatment. Last trial they let my blood so low that my local oncologist wanted to do blood transfusion and they would not let him do it. If I feel that my blood is not holding up I will take what I want.
One other concern was the doctor said she does not get to pick the areas (zones) of treatment. I told her if they don't treat my neck area I will not do the trial. As it is they are only treating 50% of my disease with this trial. They feel the dose is so low that it will not have effect on areas that will not be heated. Also I'm really scared about my LE going to react to heating in my neck...face swelling?
Just don't have peace yet about this trial...hopefully it's the right thing to do.
Another week of not knowing what my schedule is and where I need to be during the week. I'm still working and hate not being able to tell my boss from one day to the next what I'm doing. I also will try to get to the local cancer center lymphedema clinic for help. If the are does not improve soon I will have to stop working not because of cancer but because of LE. One more issue on my mind right now.
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I feel lost for words. I know nothing about participating in trials. It really sounds like the needs of the patient are nearly irrelevant if you are to be included in the trial. That just doesn't seem right. You've persevered so long and so well with all the supplements you take. I wouldn't be inclined to give them up if I were in your shoes, unless the duration of the trial is just a few weeks. The only encouragement I can give is to pray alongside you and hope you receive divine guidance toward the best choice.
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FlaLady,
Praying for peace with this decision, one way or another.
If you're concerned about facial swelling, do ask your therapist to demonstrate and give you diagrams of the facial LE massage. You can use it yourself on a daily basis prophylactically. (It's a good thing to know how to do anyway, because it's amazingly relaxing and comforting.
) The good news on that is that facial LE generally drains down during the day, so unlike LE in other parts of the body it's generally limited to a nighttime problem. Looking forward to clear direction for you, FlaLady!
Be well!
Binney -
Binney...good to know about the face swelling. One less thing off my mind.
Thanks ladies for your support. I hope to find a great LE therapist...boy do I need help. I did find away to move the fluid on my back a little....take a soft nerf ball about six inches and stand against a wall and roll the ball gently on my back and shoulder. Seem to help a little.
Flalady
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Or you might want to try a (new, clean) paint roller...
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Flalady I am getting really pissed about this bc barreling, messing around with you ... we just need to blow this right away out of your bod.. into a stupid black hole where it belongs.
HUGE HUGSSSS !!!!
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How about those long "noodle" things they use in swimming pools? They are really cheap, and since they are long they might work down the whole back.
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Smart ladies! Nerf balls and unused paint rollers: counter pressure against tissue oncotic pressure! Wished that worked for cellulite.
Flalady, are you eating o.k.? Do you know what your blood protein level is (albumin)? Have you had your heart functioning checked recently as in an echocardiogram, to ensure adequate pumping, no signs of heart failure? It sounds appropriate to ensure no heart problem co-exists which may be contributing to truncal edema.
Well its Sunday at midnight. I'm saying a special prayer for peace on Memorial Day for all lost souls and their hurting families, for our troops overseas and their families here, and a special prayer for peace for my sisters and brothers in breast cancer here at breastcancer.org.
Fondly,
Tender
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Tender,
I've been on the road so much lately I have been really eating bad. I will ask about having albumin checked. I just had a echo done three weeks ago and it was ok also two CT of the lungs...OK. I do still have the cough a little and shortness of breath if I get excited or exercises??? This has been going on for weeks now. I'm trying to get back on my exercises bike but this arm hurts so bad I don't want too do anything.
I also send out prayers to our wonderful troops and their love ones. Thank you and God Bless.
Flalady
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Just checking in, Flalady. I do understand you must be exhausted from the long drive, work and all the other good things you do.
Maybe a protein drink, or a fruit antioxident drink would refresh you when you can get one.
It's important to try to keep your vitamins, minerals, and especially protein up while your turning over cells through treatment.
As always, my very best to you. Hope the rain has stopped and the sun is shining again.
Tender
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I'm doing the hurry up and wait game right now. I called today with a list of questions about the trial and they said they would research and get back with me. I'n still worried about only treating a small part of my disease. I can feel my disease really growing on my left shoulder and on my back right now. It's so bad I have to ice my skin very night to be able to sleep.
I just don't know what to do....I just feel my hands are tied with no one else wanting to give me chemo right now.
Flalady
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I don't wish to intrude here, yet I am wondering if you might consider chemo for a variety of reasons. I know you are trying to delay it's use, but if you think the trial treatment is too contained then perhaps it would be good to reconsider.
Did you ever try a platinum drug, like Cisplatin or such? It seems to be very active in some triple negatives. Of course the down side is the aggrevation of your neuropathy.
Do you think a visit with your local, long term oncologist would be helpful.
I really am feeling for you,
Tender
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Tender.
My local doctor is the one who does not want to give me anymore chemo unless I get a organ or bone met. He said there is no reason to continue to treatment? He's afraid of me building toxicity?? We've had the talk about QOL and I told him that my skin is part of my quality of life. That is when he finally agreed to this trial.
I feel that I'm left hanging trying to find my own next treatment,
Also my cough back and shortnes if breath and can't get any answers on why. If I do this trial I will have all my scans redone next week. Maybe I will get some answers.
Flalady
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Flalady:
You'll never cease to amaze me. Your strength and determination are unbelievable. My thoughts and prayers are with you always.
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God Bless you FlaLady for all you're going thru. You are amazing indeed. Prayers coming your way now.
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Good thoughts and prayers being sent on the jet stream your way, Flalady.
A full week for you, so am sending you some extra energy.
Hug,
Tender
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Hi Flalady,
A big shout out with good wishes being sent your way today.
I know it's decision time for you on the trial, and I hope you may find some peace. Seems like it's rainy season in Florida again, so thought I would let you know your very much on my mnd and in my prayers.Best to you,
Tender
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I had my first treatment yesterday. Other than a fight about using my arm again everything went well. I meet the drug/machine representative also. She was very nice I ask me how to get the word out to get more chest wall recurrences and IBC ladies into their trials. I told them about what sites to hit and some other helpful info about how we ladies research. She was taking notes and giving them to her marketing staff. She said too let anyone they would pay for travel to get you into their trial. The only thing you can't have done is max out on your Adriamycin doses.
They kept wanting to push nauseas meds and I kept telling them I don't need them. So I feel find other than I'm tired today. I had a good stay because my family came over each day and I got to meet up with a aunt and cousin I have not seen in a while.
I'll let everyone one how these treatment progresses and if there is hope for these hard to treat areas.
Flalady
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Flalady....sending you positive thoughts and energy. Happy too that Tender is keeping tabs on you.
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Flalady....sending you positive thoughts and energy. Happy too that Tender is keeping tabs on you.
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Dearest Flalady,
I see you are struggling with your arm quite some. It' is so unfair that this has presented too. Have your doctors done a culture of your arm to see if there is any bacterial growth like Staph? I'd hate to have that overlooked and you're right to suggest one.
I'm wondering how you are now. It's been several days since you posted about your first treatment. I know your days are full, and you drive too much for treatment. I hope you might ask for some pain medicine and perhaps some sleep aid, possibly melatonin. Knowing you you might be using this already.
Even though the Doxil is suppose to be predominantly local, one can never fully escape some systemic side effects. I hope too your oncologists' team are offering anti-nausea agents. Don't let yourself get dehydrated, what with your chemo and the Florida sun and the driving you do. Of course that's tough when your on the road.
I continue to think of you daily and am praying real hard for you. I hope you get the answers you need: at all times our doctors and nurses should listen to the patient with open ears. Please don't forget about venting here at this forum: we certainly understand you are going through too much right now and need all the human support you can get.
I miss you Flalady, and hope today was a better day for you. DON'T LOOSE HOPE!
Tender
PS Blundin, yes, Flalady's a winner to us all and a wonderful friend. I will follow along her path even quitely, and I thank you for your encouragement. You and DH look lovely together in your picture.
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FlaLady, I never have any great advice to add as Tender does, just want you to know that you are in my prayers.
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Lots of comfort and concern being sent your way today, Flalady. Praying for strength as you continue to fight the beast.
Gentle hug to you and arm around your shoulder,
Tender
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Hey Ladies,
Thank you so much for your concern. I'm having a lot of problems with my right arm and shoulder with the LE. The pain has become so unbelievable bad. I'm having problems typing and I can't pick up the arm to even brush my teeth. I went from one to two pain pills a day to one very two hours. This is really hurting my quality of life. If it gets much worst I will have to have home health care to help me. I do have a appt Thursday with a new LE therapist but I've heard nothing but negative things from my doctor's about getting any relief. They feel with so much disease in my arm and skin that they will not be able to move the fluid.This really sucks because I did feel the chemo for two days with some side effects of fatigue and heart burn... the LE has ruled my life. I already feel that I did not have chemo last week. But with this arm. .. I pretty much have to set and support the arm and shoulder on a pillow.
My skin smells horrible but I do believe it does look a little better. I just don't know if I could stand to heat my chest wall again??? The hardest part is all I get from the medical people is...at least the skin can't kill you??? So what? Is this quality of life?
I also after almost four years had to give notice too my job today. I did go in for a few hours yesterday and today but the arm was really bad and I had to go home. Now the new worries start about handling getting on disability and cash flow... I'm blessed that I do have some savings but with me having to hire everything done I don't know how long it will last. It seems every one around does not have time to help me right now.
Ladies I would just be happy right now to be more active on the computer and writing my journal for my family....but I just can't do it right now.
Please pray that my new therapist has some good iedeals on how to help me.
Flalady
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FlaLady, you got it. Between now and Thursday that therapist is going to be so surrounded by prayer that God's peace is gonna flood that room the minute you walk into it. Rest up, be well,
Binney -
{{{{{{{{{{hugs to flalady}}}}}}}}}}}}}
If I had the adequate resources, I'd come to florida and chauffeur you to your appointments. I hate to think that you have to do all that driving yourself. I'm sorry to hear about letting go of your job also. I hope disability payments start soon and boy howdy, they'd better not give you any grief over qualifying for it.
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Oh this is just so frustrating for you, Flalady. Might I make a few suggestions, bedside-like chat?
- When you see the LE specialist, ask that the head of the department be brought on board for consultation. You need the most experience individual possible. Maybe Binney might help us out here: instead of counter pressure with LE garments, is there any possibility that counter pressure with water (as in a bath of some sort or other device)?
- Why not ask to see a burn specialist at your hospital? Such individuals have knowledge of skin way beyond the average physician. He or she might make just the right suggestion to help put you on a better course. Would a barometric chamber benefit you?
-A pain specialist might add various integrated medications with longer half lives so that your not taking the same every 2 hours. Clearly swollen soft tissue in your arm and shoulder are causing neurologic pain (burning, lancating) and perhaps even a block of some sort would give you several days relief.
-Nutrition, which you yourself are excellent about. Fluid upkeep is absolutely essential given your risk of dehydration. Some one needs to monitor you for dehydration, make sure fluids via IV aren't needed.
I'm sorry about stopping the job. I know it's a great source of pride for many of us. Be gentle on yourself though: time is needed right now to pursue your current path and you can't be in two places at once.
Don't worry about not posting: we all understand you are in pain and it's difficult. We'll keep posting to you though to let you know we're around and care.
I'd also like to suggest you visit your local disability office for emergency approval. Also, they can do a phone intake, and you could provide pictures of your arm for them to understand fully your situation. The first step is to make immediate application: it's a series of information gathering and questions (which you may also do online), then attested statement and submission. That first step is all that needs to be done to get things going forward.
How sorry it is that in America our health care and disability care are so self-dependent even in times of great need. Perhaps a call to your local cancer association, hospital social worker or church might yield some physical help withl all you are doing.
Tender
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Flalady -- Tender covered it very well as always (bravi!) Ditto for me.
So much clear, good energy is flooding your way from all of us.
abbracci (hugs)
Marilyn
Ps. Thanks Tender.
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Another couple of days have passed, and often my thoughts have drifted your way.
Many hopes that you're noting less pain and treatment seems working with each passing day.
Please know we are like the wind at you back, a cool breeze of supportive thoughts to help keep you on track.
May you rest well tonight and tomorrow before the new week arrives and then rouse up once more in your fight that the beast not survive.
Much affection and wishes of grace, mercy and peace for you, Flalady.
Tender
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