Re: NEDenise Downer Alert!
 

Denise,

If you can not complain then who can?? This is such a process, and if this is not the place you can complain and whine then that is messed up! I watched a full day of TedX video's on Sunday and took notes to remind myself to have hope, be an inspiration, self-critizing, and the last one I watched was Self Compassion!!

It said basically....How would you treat your friends? How would you treat your family? Do you treat others how you would want to be treated? A lightbulb went off in my head, and I thought it is okay to love myself (self compassion). I treat myself like my own worst enemy in my own head, and I didn't understand it.

Through the world of cancer I worked at more then others ever realize from the people around me and how sick I wasn't, and I beat myself up. Loving yourself in my own twisted head meant being selfish or self indulgent. I am alone in a 3 bedroom house with a basement if I didn't chear people on or show a positive attitude maybe the only people I have wouldn't love me anymore. Another fear of having cancer is everyone will be tired of it all, so I have to be the best, loving, caring person and do NO MATTER WHAT.

NOW after all this I have learned that only "I" will get through this and NOT loving myself gets me absolutely nowhere. It is a new thing I just started to work on after Sunday. It is saying NO, and I have done it twice this week because saying YES is killing me I feel like and if it isn't cancer then it will be "my" own worst enemy.....

Whew, after all that I just said....AGAIN if I didn't have this board to be my total honest self in a po-dunk down and be afraid, understand that you understand, ask questions about what I should do, complain, whine and whatever else anyone wants to call it I don't know what I would do.

Denise you are JUST FINE and we LOVE you!!! And we can cheer when we want too and complain when we want to because this is a safe place for us all!!! And if some don't like it then too bad don't read what you have to say and that is ON THEM!!

I hope this all makes sense because I am supposed to be working, but my brain is now exhausted. I am hear in body but I spent, and I UNDERSTAND what you are feeling, and in a weird way I hope it makes you feel better in your mind, and I am not being pollyanna positive and you are NOT ALONE!

I notice you make sure you tell everyone HAPPY BIRTHDAY!! And I think it is so nice of you to do that....You are kind hearted, loving, and a gentle spirit. I feel like I am starting to know everyone slowly but surely by posts.

Hang in there.....

Re: NEDenise Downer Alert!
 

Hi NEDdie,

Well, first the good news. Yay for the big things like no progression.

I know how we get tired of being tired, tired of the horrid symptoms. I hate yours. Off balance for starters. Scary. Shaking hand/arm -- is that a thing a neurologist should look at? Let him figure out what no one else can. Onc says, not his department. Okay then.

I understand the very last thing we want to do is go for ANOTHER doc appointment. And/or ANOTHER test. But sounds to me, this is what you need to do.

Having discovered endocrinology, I don't know how I managed all those years without such a person in my life. Glucose, thyroid, blood tests not one of my many docs ever ever broached! And much was and continues to be discovered. Glucose tolerance test is nauseating, but it reveals stuff you may need to address. Ask a good endocrinologist.

Who tends to our adrenals?! My dghtr has a holistic chiropractor who has cured my other dghtr of vertigo, helped me with hot flashes big time, and helps my dghtr's adrenals get it together.

I know you, Denise, you won't give up. I am so sorry you barely have the energy to cope with each day let alone to schlep around to more docs, but maybe that's what you need.

This isn't your onc's bailiwick, which is great actually. So you need to find who can fix this.

Your symptoms are asking for some attention and they deserve it.

Adrenals shot? I can tell that from here, and I'm not a medical professional. Look what you've been through!!!!!

Surely lots of sleep, which repairs and renews all systems is essential!!!!! GO FOR IT!!!! No guilt involved here!!!!! Your body is screaming out for some gentle loving care. You must give it what it needs, if you want it to be good to you!

Be your own best friend! Be good to YOU! Just as you would to any and all of us!

Steroids are very helpful and/but are full of badness too. I know you're back to weaning, and I think this is a very good thing.

Bless your MRI. See parts of you are working well!

But feeling lousy all the time gets old, especially after allllll this time! You've been more than a trooper, you are a superstar, a Ninja warrior of the highest ilk.

I'm looking up and pleading, Come on. Give this extraordinary lady a break!

Neddie, try believing and rethinking about "weaning" (horrid though it is, and I've heard all your stories and swear I empathize with all my heart!) Think -- WEANING IS KEY TO GETTING BACK TO "YOU"! Or "ME". See yourself being your old healthy, happy, fun and funny self as you wean away! FEEL how it will feel. Remind your body how it feels to be healthy!!!

Do that throughout the day on a regular basis. Seeing it in vivid detail (you have the imagination to fill in the blanks here). Feel exactly how it feels. I know you can remember. Act as if you KNOW it is a done deal, you're on a path, in a process, and you can touch your desired goal NOW.


And please remember -- you can whine here all you want. You know that! And, I might add -- you are NOT weak because you whine. I find it revitalizing. Getting all that's bugging up and out, voicing it to the right people (US!). This is a very healthy and necessary part of being human! I believe in venting wholeheartedly! Don't give it a bad rap, please.

LOVE TO YOU, AS ALWAYS ((((((((((Denise)))))))))...
http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/hug

Andi

Re: NEDenise Downer Alert!
 

I am thinking about you Denise.

Re: NEDenise Downer Alert!
 

So sorry you feel bad Denise, understandable and just wanted to add my good wishes and (((hugs)))

Re: NEDenise Downer Alert!
 

Okay, this sucks. Totally sucks.

Please ask if they're mixing your Avastin with benzyl alcohol. If they are, tell them to stop. (And even if they're not, the benzyl alcohol in Herceptin has a late cumulative effect--with each infusion, I got worse, but several months after I stopped receiving infusions I had a downhill slide into really, really bad).

I had every single one of the symptoms you're describing except for the shaking arms (although I did experience something similar--mostly in my shoulders--albeit intermittently). For some of us, benzyl alcohol is the devil. It has a bad effect on acetylcholine, which leads to a whole host of bad news. See here:

http://www.ncbi.nlm.nih.gov/pubmed/1725728

I couldn't find a list of everything that acetylcholine does, but I did find a list of what anticholingerics (acetylcholine blockers) can do, and you'll find your symptoms in the list here:

http://en.wikipedia.org/wiki/Anticho...ergic_Syndrome

I also have a list of brain effects from the lack of acetylcholine:

"Acetylcholine is the learning and memory neurotransmitter. Symptoms of poor acetylcholine activity include:
• Loss of visual and photographic memory
• Loss of verbal memory
• Memory lapses
• Impaired creativity
• Diminished comprehension
• Difficulty calculating numbers
• Difficulty recognizing objects and faces
• Slowness of mental responsiveness
• Difficulty with directions and spatial orientation"

You already know that my onc and other doctors did nothing, so my endo gave me Aricept (donepezil--and trust me, you want the generic because a 90 day supply of the brand costs about $1,000), and it worked a small miracle for me. What has improved things over and above that is daily lecithin--about 15-30 grams, split into 3 doses (5-10 grams/dose). I was taking it all at once, but I discovered that splitting offered better performance. I started taking brewer's yeast at the same time--it also contains choline along with a bunch of other good things (but not Twinlab--either Bluebonnet or Solgar is best). If you can't get them to prescribe a trial of Aricept, at least try the supplements. Acetyl-l-carnitine will also help, as will citicoline or alpha gpc, but not as much as lecithin.

Your adrenals probably aren't helping the situation any, but be aware that acetylcholine has a role there too.

I hate to see this happen to you, and I demand that you get better. I insist. It's ridiculous that your doctors aren't turning the world on its axis to find a solution, because if anyone deserves a fix, it's you.

Re: NEDenise Downer Alert!
 

Awww s*^t, Denise, you deserve a good vent now and again! Whine away. We'll listen and commiserate! I wish I had a good suggestion regarding something to pep up your languid adrenals. There are supplements for "adrenal support" that may be beneficial.

It is hard to be the Timex Engerizer Bunny all the time, so don't beat yourself up for feeling discouraged. If I know you tomorrow will dawn brighter because you are an optimist to the core. I will pray.

Re: NEDenise Downer Alert!
 

Re: NEDenise Downer Alert!
 

Well, I loved Rhonda's post!!! LOTS of great info in there!


Adrenal Support Recommendation Sheet

I read that obviously being stressed out (which you must be physically and psychologically/emotionally) is a cause for burned out adrenals.

AND -- among other factors -- WITHDRAWAL FROM STEROIDS -- can knock out your adrenals!!!!!!!! Hmmm....

Denise, I've been scouring the Internet re adrenal support for you. There are things you can do to help the process of bucking up your adrenals, rather than just waiting for them to heal!!! EMPOWERING, RIGHT???!!!!!!!!!!!!!

WedMD, Dr. Oz, and more... They all seem to agree on a few supplements:

ASTRAGALUS (which I take w/Thymulus) to boost my immune system.
B COMPLEX (which I take B1, B2, B3, B5, B6 and B-12)
C with bioflavonoids
TYROSINE (I take every morning along w/B-12 lozenge -- or I
am a slug...)
MAGNESIUM (which I can't take due to IBS)
CHROMIUM (in my daily regimen)
CARNITINE (yup, I'm on that too, daily)

There are also supplements w/adrenyl extract, which you can read about. I don't use these.

DRINK LOTS OF WATER!
Eat protein, fruits, vegetables. YOU FEEL BETTER AFTER EATING! THIS IS EXCELLENT!!

Walk, even if it's in your house, as much as you possibly can, get the oxygen flowing. But hold on to walls if need be. I've been there. Do NOT fall!!!!

Laughing at Rhonda's list of symptoms. Difficulty calculating numbers -- that's a permanent condition for me!!!

Your ECHO will be fine. If not, I have stuff to help... You are fine. No progression of disease. Forget that. Peace of mind!!!!!!!!! I have you covered.

It's all about your adrenals. And you can start supplements for that NOW. I know your darling husband will be happy to go get them for you. Don't even wait to order from Vitacost.com (best quality and discount prices). Just start getting better.
Remember how loved you are, (((((((( DENISE))))))... !!!!

I absolutely echo Rhonda's words -- "I hate to see this happen to you, and I demand that you get better. I insist. It's ridiculous that your doctors aren't turning the world on its axis to find a solution, because if anyone deserves a fix, it's you."

Andi

Re: NEDenise Downer Alert!
 

AND -- I forgot -- a few mentions of:

CORDYCEPS MUSHROOM-- used for a number of ailments -- among them -- dizziness and weakness.

Strengthens immune system. Increases energy, enhances stamina, reduces fatigue.

+ bonus -- may shrink tumors!

Go for it, Denise...

Re: NEDenise Downer Alert!
 

I must've read your sig wrong. Still getting Herceptin? I'd bet anything you'd care to wager that it's the benzyl alcohol.

But the rest...I can only hope that this will push them into taking extraordinary measures to get an answer and get your issues resolved. No one should have to deal with this bs.

Re: NEDenise Downer Alert!
 

Oh Denise, you do so deserve to get a break, and I too demand that you get better. I'm just blown away by the incredible information on this site - thanks to all of you. I really think Rhonda could be on to something with the benzyl alcohol.

Love Marie x

Re: NEDenise Downer Alert!
 

Denise,
Hang in there - know you are in my prayers. This is the place to rant and rave. Cyber hugs to you - Pam

Re: NEDenise Downer Alert!
 

Denise, I hope you are thinkng positive about this. I understand my level of "blechy" and imagine yours is 10 x's worse and steroids prob causing all sorts of blechy. I remember I couldn't figure why my family put up with me, I wanted to run away from me. I didn't even like me!!! All sorts of side effects and blechy. Love that word. Lots of prayers for all the good things you deserve. Cry or scream when you need to, you're allowed. Cathy

Re: NEDenise Downer Alert!
 

Denise sending hugs to you and prayers to above. Lois

Re: NEDenise Downer Alert!
 

For goodness sake...whats going on with your body? While I am very, very happy this isn't being caused by cancer, Im am distressed to hear they don't know what is causing your symptoms so they don't know how to treat it. When I was coming off the steroids I slept almost constantly the first few days after reducing the dose, and I felt horrible. So I can definitely see the exhaustion aspect of it. Have they mentioned running any other tests to rule more things out?
You are always being so positive and giving everyone here support, so please know we are all here for you on the days you need support. We want to be here for you.
If it makes you smile even a little, I want you to know that when my balance was off, my kids called me John Wayne. They would say..oh, Mom is walking like John Wayne again. :)
I definitely pray that God guides your doctors into finding out what is causing this and getting rid of these nasty symptoms ASAP. Big hugs to you.

Re: NEDenise Downer Alert!
 

Dear Denise, I am sending tons of hugs across the ocean hoping your oncs will figure out real fast now what is happening. The fact that you feel better after eating may give them a small indication. Glucose linked? But what can cause that? Oh how I would like to help you Denise... When I see what your Doctors have planned I feel that they are fighting for you. Hurry Docs! Love, Michka

Re: NEDenise Downer Alert!
 

Dear Denise,

I echo all the good thoughts the others are sending you. I'm sorry you've got a whole lot of tests to face and then the waiting for results, but I am glad you are having them. I know you're the kind of girl who like to know what going on so you choose your own path.
I wish you good sustaining and healing rest, followed by recovery of your energy.
love
Aussie Girl

Re: NEDenise Downer Alert!
 

The spinal fluid results will be important. If they are positive, then I want you to email me immediately at my personal email. It is not what you want to have happen, but I want to let you know how to handle it if it does.
Rolepaul

Re: NEDenise Downer Alert!
 

Thanks Paul
Could you PM your email again? I can't find it.
Denise

Re: NEDenise Downer Alert!
 

Dear Denise,

Thank you for updating us. I'm so sorry you're going through all of this. It's scary and awful, and you have every right to whine, complain, kvetch, etc., etc.

I've been thinking about you a lot lately. I hope everything gets sorted out and soon.

All my love,