Flalady Update
Comments
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Flalady,
Hoping your cough has lessoned and breathing is o.k. I've been thinking of you.
I wanted to leave another citation, an in vitro cell study in reversing multi-drug chemoresistence throught diet during chemotherapy cell exposure. It hasn't gotten any further evaluation regrettably. My big worry always is that these agents may inhibit a needed liver enzyme (CYP450 enzyme) for metabolism of someone's chemotherapy or hormone, so since you're working with a clinical pharmaco-oncologist he might weigh in on this. Just thinking....
http://cancerres.aacrjournals.org/cgi/content/abstract/56/3/574
Edited to add the following:http://grouppekurosawa.com/blog/2009/01/prosac-anti-depressant-drug
((Gentle hugs))
Tender
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Flalady,
How are you?
Your Friends Indeed.
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I am amazed by you're strength. I've learned a lot through you. I'm not on the alternative board as much...everyonce in awhile I check in to see how everyone is doing. The further away I get away from my dx, the easier it is to forget it. Women like you can't...You live with it...and everyday you are in the fight of it. You are one special lady. Thanks...and like the others, I'll be praying for you.
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Well...things are not good today. I went back to my original oncologist about the scan results that I got back from the new clinic that said no pleural effusion or lung mets. But I still have the cough and shortness of breath. He said my right side of my neck is very swollen and that my nodes have become so involved that it is blocking something...I'm not sure what he called it...in my neck and this is blocking fluid in and out of my heart and lungs...He said I'm looking at heart and lung failure??? What! I feel fine!
He said to stop rads and need to start chemo Doxil Cytoxan and something else. Also high dose steroids for the swelling. This does not sound very good....I really was expecting this right now.
Lung mets yes...but this?? I will see my onc. on Friday and probably start chemo on Monday.
Flalady
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Oh dear, Flalady, no this is not good. So your oncologist called in the steroids to reduce the swelling and you'll start asap? Did he tell you what to report sooner than Friday? Worsening of shortness of breath, dizziness, blood pressure drops, significant swelling.
Is there a family member or friend you might call in for the next couple of days to be with you? Sounds as a time for some help, you know, keeping the meds straight, helping you at home with company, driving?
I am so sorry to read your news; I now you were counting on the rads, but your alternative sense also pushed you to see your original oncologist who helped. I just know he's thinking hard what chemotherapy to give you. Be prepared that he may say on Friday, well, let's do it.
Please keep us posted if you can and feel our support. I hope too a friend near you can give you the hug I'd like to.
((Hugs))
Tender
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Flalady - I'm at a loss as to what to say. Please know I am thinking of you in my daily prayers for strength and response during your treatments. I know you have more experience than probably anyone here and your instinct and faith will guide you. Hugs Joann
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You have been and will continue to be a huge huge help in BC. From when I started here and wrote to you and you took the time to help little me.
I am praying for you, and I wanted you to know that. You keep fighting sister... you inspire!
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Flalady,
I don't know what to say, I have been so happy with Cam's progress, I have not been keeping up with you like I should have. I am so sorry, and wish there was something I could do.. Remember, Cam had swelling in neck with this last recurrance, she had CHF with a LVEF of 27 and had to be admitted to Hospital for shortness of breat due to lungs. She is fine now.
Can you Onc call Dr M and see if any thing is coming soon.. or off label stuff availible.
My prayers for you
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MrIBC-So glad that Cam is doing well. Hopefully, FlaLady will be heartened by this and have the same results. My prayers are will you all, dear friends.
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Hi to you FloridaLady,
i have just read this whole thread and i want to say that i am hoping and wishing hard for success for you with this new treatment. I was also wondering if you could possibly have some asthma from previous rads that could be impacting your breathing? If you are going to be getting some high dose steroids, that might help any asthma. It sounds to me like a good thing that you don't have lung mets or pleural effusion, but i realize that it brings up other concerns about the treatment you will do next. I am praying for success and renewed energy for you. You have a wonderful support group in this thread.
celia
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Vivre
Hello dear friend...keep walking and biking with your skinny self...
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FlaLady, the shortness of breath must be very distressing, but it sure sounds like good news that there's no pleural effusion or lung mets. I'll have to look up pleural effusion, I don't even know what it is. I hope you get another opinion. If there's swelling around your lymph nodes, well, why couldn't it be a sign that your lymph nodes are simply doing their job and trying to expell a whole bunch of gunk? Perhaps I'm just being hopeful, perhaps naive. I hope you get some relief and some good news on Friday at your next appt.
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God is good and prayers do work miracles for me. You know something good is about to be said when you doctor is walking on air into your room. He said he was completed taken back about the my scan results...It looks like I have bronchitis and nothing more! Praise God and your mightily prayers ladies. He is concerned about my shortness of breath but and wants me to have a echo cardio gram done Monday. He also said... which I'm a little taken back ...that I should return back and finish hyperthermia/rads.
I can't believe how much one day can change everything you thought would happen over the next few weeks...Thank you, Thank You all so much for being there for me.
Flalady
Revised info about my neck...I do have disease in my neck that has some size to it. (I can see the tumors from the out side and feel them. This area did show a little more increase in size. I have a lot of fluid in my neck and I think my face also that is lymphedema fluid backing up out of my arm and back and with so much skin disease it is having trouble finding away to move about. They hope rads will knock down the larger tumors so I may get my lymph fluid moving around again. So I do still have issue with this area but no way as bad as we all though it to be. This increase in size may send me back on Xeloda. My oncologist really feels that if we hit the skin only mets with chemo that I will not have anything to use when it move into more dangerous mets. I told him I'm more worried about living with skin mets...they can be horrible! When I said this he smiled and said the clinic all knows me and discusses my treatment and response. He said all the doctor's are impressed that the skin looks as good as it does??? Well...I guess that good but I'm not happy with it. I can smell it breaking down...Yuck! Any way I have hope this new treatment will hold this skin at bay for awhile. Now I just got to get back into treatment and hopefully get this clinic on schedule. They are doing a horrible job of scheduling treatments.
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What wonderful news!!!!!!
Go getum lady!!!!!
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So very, very happy for you and all of us here at this wonderful news. This is the highlight of a rainy day, turning sunny!
Dancing on a rainbow with Flalady and all.
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Wow, Wonderful News!!
I am thrilled to read this.
Pam
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FlaLady, this is totally good news about the bronchitis!!! Now you can concentrate on getting the other issues (neck, fluid, skin) taken care of. YAY!!!!!! Keeping good thoughts for you!!!
celia
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Is this a trial you could look into, would you be able to participate? I have heard really good things about this. You are in my prayers.
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Wow FL Lady.. you have been through a lot lately. My fighting spirits will be with you do dodge off these nasty skin / neck nodules !
I cannot wait for the action plan you are going to come up with !
XOXO
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Hoping it's a beautiful day in Florida today with some wind to offset the heat. I understand it's been rather warm down your way, and of course dry.
Just wanted to check in and see how you are doing. We're all thinking of you.
((Hugs))
Tender
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I just wanted to thank everyone who has sent me cards and especially the Hugaghan bc sisters from Baton Rouge! Love my Hugaghan...it truly felt like a hug from each of you.
Here is my latest update. Cough is finally getting better. Started back into my new treatment with hyper/rads this week. I can't believe how HOT this thing is...110 degrees touching my skin. I can't believe it does not burn me. But I did feel my tumors over the next couple of hours and they were much more softer than before the treatment. Hopefully this means the rads can really beat them up. I also talk to my main oncologist today and he agreed that the Thermdox trial that does hyperthermia and Doxil is the best next protocol to do. This means months of driving 150 miles round trip.... One good thing is he feels the dose will not be all that toxic to me. One good thing.
Thanks again everyone.
Flalady
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Hi Flalady!
You've got a lot of support and prayers going your way. I'm another TN girlie who has been inpired by your valor and fight.
You mentioned a link to TN cancer & Vitamin D? (I think you PM'd previously)
Thank you for all your wisdom and information.
God Bless you.
Jeannine
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Glad your cough has lessoned. Baby steps, one at a time now.
Here's a recap of your trial literature restating the 14 day prior limits on drugs/radiation before the Doxil/MW.
- Has received any of the following medications within 14 days prior to enrollment: amphotericin B, antithyroid agents, azathioprine, chloramphenicol, colchicine, flucytosine, ganciclovir, interferon, plicamycin, zidovudine, probenecid, sulfinpyrazone, cyclosporine, phenobarbital, phenytoin, streptozocin or the administration of live viruses in immunocompromised patients.
- Has received any external radiation therapy within 14 days prior to enrollment.
I know you already got this down, but thought it might help for easy reference.
150 miles is a lot: how is your neuropathy doing ? Can you ask any friends/family to help out? There may be help from the local cancer society on rides too.
Glad you got the Huggahan. Will keep you warm when the cold air conditioning is baring down.
Fondly,
Tender
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Again changes?....I also had a appt with my main oncologist again this week. He is now completely on broad with me doing the Thermdox trial. This was after talking to the new doctor and he explained it more in-depth that my wish is to manage my skin for quality of life.
Now my new problem...or I should say on going...this clinic is poorly organized. The girl who does my hyperthermia is the only one trained too do it and she is going on vacation for week and she is in fear of being laid off???? So I'm going to have to set down with whoever is running this trial and make sure if I start this trial that I will be getting the treatment as the trial states. Damn this place is driving me up the wall. Nothing is ever easy.
My other problem is my lymphedema is getting completely out of control. I don't know if I can take doing this every day. I may have to stop this and move onto the trial so I will only have to be heated once a week. I can't believe I'm saying this...but I wish I was doing just plain old chemo.
Tender-My neuropathy is doing pretty good right now. I changed my appt to first thing in the morning (I'm getting up at 5:30) before it is too hot and I'm too tired. So far it is working. I still go into work a couple afternoons a week.
Flalady
Flalady
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FlaLady..I have been following your posts and I must say God is Able as Stephanie would say!......I am absolutely thrilled that your breathing was "only" bronchitis......It is funny thinking of bronchitis as "only".....Not too long ago none of us would have thought of it that way.....My prayer for you dear FlaLady is that you get the treatment you need to diminish the lymphedema to manageable and get someone to go with you to drive the 150 miles round trip....That is a lot for someone with such bad LE.......Have they cehcked your red blood cells?.....When mine get low I get out of breath too.....I have so far only needed one blood transfusion which I am kind of regretting cause now my liver is acting up and I hope it isn't hepatitis..........I will have my onc check in August......I am just soooooo THRILLED that you are doing much better!.......
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FlaLady, really sorry about the disorganization at the clinic. Doesn't exactly inspire confidence.
Sure doesn't seem right that you should have to deal with that too! As for the rotten lousy LE, are you able to keep the arm elevated much during the day, and especially at night? Staying extremely well hydrated (if that's okay with the treatment guidelines) helps dilute the lymph fluid so it moves better. Lots of breaks throughout the day to take a few deep abdominal breaths (helps pump the largest lymph vessel in the body). And if you're able, a few slow fist pumps (open and close, open and close) with your arm as elevated as you're able to get it at intervals throughout the day. If you know MLD node clearing for the neck, that also helps if repeated at intervals.
And you can bet I'll be concentrating my prayers on that particular stupid rotten LE problem.
Be well!
Binney -
FlaLady,
I have just found your post, and have been wondering how you are doing....thank you for letting us know.
You have been through so much and are an inspiration to so many......it sounds like you have a wonderful doctor and that he is open to your knowledge base...it is amazing what you have been thru.
I am glad you are able to get the hyperthermia..and that you live in as area where there are many opportunities for research and advancement in BC treatment.
Many of us are praying for you...last weekend I found a garden flag that stated:
"LIFE IS FRAGILE, HANDLE WITH PRAYER"
so as I was praying for my family as I lay in bed last night, i automatically prayed for you.
May the Lord bless and strengthen you in his Great and awesome love.
Amber
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Binny,
I now have cancer coming out of my skin under my right arm. I can not raise my arm anymore, barely extend it. I do put it on a pillow at night. I can move the fluid at night but as soon as I stand up it's back in the arm. I hate say but I'm back too carry it by my side because it hurts so much. My issue is not so much arm...but shoulder and back on right side. It's about four times the size of the other one. The pain is so bad the only way I can sleep is put a ice pack on my shoulder. I know this is a no-no but the pain just too much. I using low dose morphine for pain. I hate this LE... it is controlling my life. I feel fine other than this on going pain. I thought about trying to go to a LE specialist in the next city over....but when would I do this with my driving schedule?
Flalady
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hello Flalady,
So sorry to hear of your pain with the lymphodema. I am praying that you will
get some relief and be able to see the LE specialist soon. One of my sisters has
LE very bad because of some previous radiation treatments and is trying to get some
relief with the sleeve and pt. Best wishes and prayers for more comfort and pain
relief.
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Good morning, FlaLady,
You're really some lady, you know that?
Kudos! And yeah, the stupid LE can take over. Okay,obviously there's no way you can fit daily LE jaunts into your "social" calendar, agreed. So, is there anybody who'd be willing to go there with you once or twice and learn how to help you with it at home? No kidding, reducing that pain would be worth gold, and if 20 minutes of daily MLD would help do that, then surely there's someone who could lend a hand, no? Maybe a PT or OT assistant from your town who'd like to learn a little about LE treatment and could donate a few minutes a day to you for the privilege of learning about it?Just wracking my brain here, since I'm hating that you're going through the rotten lousy LE thing when you've got bigger fish to fry (literally!). And I so want you to be able to sleep comfortably, even wake up with world's less pain.
Is a night vest possible for the truncal swelling? The compression is much gentler than other garments, but it'd help reduce swelling and prevent new swelling as well. If so, I'd recommend JoviPak, and request their softer, silkie fabric. They're here:
http://www.jovipak.com/
Insurance covers (usually!) with a prescription. Custom made could be designed with as much room as you need to accomodate the underarm skin break-through.But hey -- bottom line is I'm at least thinking of you throughout the day and sending up prayers every time.
Be well!
Binney
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