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zenrookie

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Reply with quote  #1 
Susie was getting headaches a few weeks ago.  They did a scan, and on the worst possible day we decided to bring my oldest daughter for some trip to the mall after the doctor visit.  Since the beginning, my wife's worst fear is that the cancer would go to the brain and it has.

Our Oncologist said that this is bad.  THat if there were a stage 5 she would be in stage 5.  The Rad trial was discontinued, and we were kind of handed off to the radiation department down in the basement. 

Large doses of Decadron.  A wild custom made mask for Susie, and for a little more than two weeks, each day she gets radiation zapped toward the many lesions within the brain.  This new doctor is very tight lipped, very grim and since we live 3 hours away, we have a family friend who has let us stay at her apartment with her (she lives alone) during the week. 

My patience seems gone now.  A prescription was brought to pharmacy and it was written very oddly. Basically I'll translate the half latin, half writing. It said, dose for a child 6 months acetaminophen to be given every 6 hours.  I had slept on my shoulder causing bad pain which must have lowered my tolerenace to stress, etc.  But the grandmother was in the pharmacy window demanding the medicine like it was fast food.  Somewhere in my head was a warning that has come out this year advising about dosing children under two years old with over the counter meds.  (and acetaminophen is an over the counter med)>  At same time two other customers are demanding their prescriptions now. My staff is frozen, all waiting on me to render decisions on all of these and render them fast.  I start with the acetaminophen. On top of the piece of a report I remembered, but couldn't remember verbatim, I chose to say to grandmother, I am sorry but I am not comfortable filling this prescription now.  (tried to move on to the next rx problem which was more computer science oriented which wasn't what I signed up to do for a living.  While trying to get this impatient person out of there, the grandmother has lit up the switchboard at the doctors' office. Either a physician assistanct or nurse practicioner, starts conversation off wrong.. a little heavy on attitude which says, I wrote the prescription, fill it.  For many pharmacists that's fighting words, because by law you don't have to fill anything. You may lose all your business, but if you have reason to pause on it or feel uncomfortable about it then you are in the right.  It escalated and all my tension, stress, everything melted into just a raised voice ..well I was yelling. That said I didn't have to fill anything if I had reservations.  THey called two more times, one of the last ones was for me to stop everything I was doing and locate the specific document that made me hesitate on rx in first place and fax it to them.  Of course I don't have this. It is a series of warnings I had heard for past six months.   I get really bad, anger is unchecked.  Turns out, I'm wrong. It is for products such as "Tylenol Cold, and "Tylenol Cough"..not a prescribed tylenol which if seen by practicioner, it's cool. Maybe still not great for a six month old that in clinic had no fever when they checked him, but still. to this entire clinic, Im' the devil.

I'm simply scared to death. Don't know anything about radiation.  Wife's headaches make her cry as she cries for help for them to stop. Doctor is kind of acting today after week of treatment like headaches should be gone and you get the vibe we are being thought of as narcotic hunters.  My wife has cancer that has spread to her brain and she has headaches that make her head hurt!  Dr.'s name is so long they just call her Dr. Chek at Vandy. 

Wife terrified.  Having to live apart from our two daughters during week; I stay two ; hopefully three next week to oversee and take care of them; I'm getting better with my youngest whom has autism; she is enjoying the new playmate found in me; and taking pressure off of mom. 

I'm lost. I'm tired, I'm angry, and I don't seem to be able to hold it back any further.  but then again I'll awake tommorow and it will work out, I'll be at her side ready to fight this thing again. 

ZEN

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Susan Motheral
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Reply with quote  #2 
Dear Paul,
Hello my friend.
I am so sorry to hear about Susie's brain mets. Damn. I hate this disease!
Everyone I know who has had brain rads, has headaches during tx and for some time after. I don't know anyone who had them go away after a week- I don't know what that doc is thinking.
The worst part is, decadron helps so much with the swelling associated with the rads, but it also gives you a headache. It is a vicious circle. What about some valium or ativan? That may help ease the pressure on the rest of her body.

I have to find Constantine's report on brain mets treatment. He has some supplements that help during rads. I will email him.

As far as your story from work, I wish you had your pharmacy here. How many times have I been given the wrong dose or a medication that is contraindicated with one I am already taking? Even if the report turned out to be other than what you thought, you are George Bailey in my mind - warning old man Gower of his mistake.

You are such a wonderful man. I am glad things are better with your daughter...
I pray for you and Susie and your whole family.

love,
Gina


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Limner

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Reply with quote  #3 
You said it Gina - Paul, you are dealing with the impossible as best you can, and experiencing a tremendous amount of stress. So glad you see this forum as a place of the Heart, as I do. Let others help you as much as they are available - which may mean things being different for a while, as you take care of yourself and your wife.  3 hours away - that in itself is a challenge.  with Love - Mary

Here is what EDGE has to say about one alt - it is under Cutting Edge>EdgeCam

Boswellic Acids [For special populations]
  • Boswellic acids, derived from Boswellia serrata (Frankincense), are powerful LOX inhibitors, where the LOX-5 pathway has been implicated in the inflammatory component of many cancers including breast cancer, and especially of brain cancer or brain metastasis.
  • Optimal Formulation:
    Two high-quality pharmaceutical-grade standardized preparations are Source Naturals Boswellia Extract, delivering 262 mg of boswellic acids per tablet, available from Vitacost.com:
  • http://www.vitacost.com/Source-Naturals-Boswellia-Extract
    and NSI Boswellia Extract, also from the same online source, delivering 200 mg of boswellic acids per tablet:
    http://www.vitacost.com/NSI-Boswellia-Extract

  • Optimal Dosing:
    It is known that certain breast cancer classes have an elevated risk for development of metastases to the brain (
  • CNS metastasis), and this includes (1) triple negative (and probably basal and BRCA1 mutated) breast cancer and (2) HER2-positive disease, and therefore it may be of prophylactic benefit for these populations to supplement with boswellic acids. Except for active brain carcinoma or metastases, dosing should deliver no less than approximately 500 - 600 mg boswellic acid daily.

    Note on Optimal Dosing / Scheduling and Components
    Many clinical trials have used the Sabinsa Boswellin product (under different labels), which depending on the provider yields approximately 150 to 162mg per dose, with the  schedule typically being 3X to 4X daily, for a daily dosing of 450 - 486mg of boswellic acid content (not the extract itself) at the 3X schedule, and 600mg - 648mg daily at the 4X schedule.  Therefore, following a Sabinsa-based schedule,  the range would be from a low of 450mg daily to a high of 648mg daily, the general rough rule being to consume no less than 500 - 600mg daily as an average. 

     

    So for example the Nature's Herb Boswellin delivers 150mg standardized boswellic acids per tablet, while Now Foods Boswellin delivers 162mg per capsule.  The Source Naturals Boswellia Extract (from Vitacost.com) product is one of the higher potency formulations, delivering 262mg per tablet.  And note that some European studies are using up to 1000mg of boswellia extract for active disease, which would typically deliver 650 mg (at 65%) to 950mg daily of boswellic acid content.

     

    There is a second approach emerging to boswellia standardization: some studies are standardizing on the AKBA component of boswellic acids, known from recent research to be the critical apoptotic, anti-angiogenic and anti-proliferative component, with dosing in the range of 45 - 100mg AKBA content daily.  The NSI 5-Loxin product (from Vitacost.com) is one such AKBA-standardized product, delivering 22.5mg per capsule, hence dosing would between 2 and 4 capsules daily (45mg to 90mg, respectively).
     

    The ABKA approach, as opposed to the overall boswellic acids (BA) approach, is more targeted, seeking to assure that of all the many boswellic acids, the critical ABKA boswellic acid component is delivered precisely, so although we don't have data to resolve the efficacy comparison of the AKBA and BA approaches, the AKBA approach appears to be of higher assured quality delivery of antitumor activity.


  • Important Note on Concurrent Food Intake:

    Pharmacokinetic studies have revealed poor bioavailability for the most critical component of boswellic acids, AKBA, which may therefore compromise the efficacy of this CAM intervention.  Therefore optimal administration is dosing with a high-fat meal  which dramatically maximizes bioavailability and hence delivered efficacy; the high fat can be intrinsic to the meal, or realized just by adding 3 - 4 tablespoons of olive oil to any full meal during which boswellic acids are consumed.



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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
lizws

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Reply with quote  #4 
Paul,
 
Reading your post bring what you and your family are going through is so real.  I am so sorry.  I wish I could help you.  If I can, please let me know. 
 
Blessings and prayers to you and your family.
 
Hugs
Liz

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"I can be changed by what happens to me. But I refuse to be reduced by it!" - Maya Angelou
edge

Chief of Research
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Posts: 1,129
Reply with quote  #5 

Paul:

 

Obligations at the moment disallow  me from responding in detail now, but I  will tomorrow.  In the meantime, just  a few quick words, and a couple of queries.

 

First, you have received excellent feedback and support (thanks to Gina, Limner, and Liz), deserving of  your careful attention.  AKBA-based boswellic acids (referred to above) can provide not only anti-brain-metastasis activity, but also help relieve the neurologically-induced headaches, which are predominantly due to peritumoral (or vasogenic) edema, best known  generically as cerebral edema.  (It should be noted that clinical practice with respect to the treatment of cerebral edema differs between the United States and the European community, especially Western Europe where neuro-oncologists prefer treating brain tumor–induced edema and avoiding or minimizing corticosteroid dependency as well as corticosteroid--induced adverse events by administering boswellic acids).  

 

And of course you owe no apology to anyone in seeking humane pain relief for a suffering patient; compassionate health care should be automatic, an  intrinsic graciously offered, not extracted, right of patient care.

 

Second, brain metastasis from TNBC is challenging, but should not be viewed as either  a hopeless or fatal development, and you might find supportive one of my Paths of Hope series dedicated to long-term survival  from, and survivors of, brain tumors, posted here:

http://nosurrenderbreastcancer.websitetoolbox.com/post/show_single_post?pid=32135463&postcount=22

 

Third, there are  many effective interventions for TNBC brain metastases,  as I exhaustively (and I use that term advisedly: 26+ pages long with over  200 citations) demonstrate in my review: http://bcwatchdigest.evidencewatch.com

   

In that connection, it would be helpful to know more of your wife's diagnosis and pathological status with respect to the brain metastasis (especially number of lesions, maximal size, CNS location); as much of the clinical  picture as possible that you can give me can help modulate effective therapies.

 

Fourth, the dismal demeanors of the health professionals serves no useful value, and references to "stage 5" are ill-advised if not wholly unfeeling and ignorant, and potentially paralytic to the will of the patient and her caregivers.  We all, as health professionals, are dedicated to the maximal efforts to help the patient, and fear is always and deeply "un-therapeutic".  You won't find  that  here at  No Surrender, and it is no part of my vocabulary, or my spirit.

 

Finally, another  query:  would that be Dr. Anuradha Chakravarthy who you were referring to, who's a radiation oncologist at Vanderbilt?  In any case, at some point it might be useful to  get the input of a neuro-oncologist with expertise not only  in (primary) brain tumors, but metastatic ones such as this, and at Vanderbilt there is the eminent Reid Thomson (phone: (615) 322-7417)   who is Director of the Vanderbilt Brain Tumor Center, and who is an expert in cerebral edema.

 

So if you can provide me with some information as I requested above, I can then  provide some more focused information and guidance.  And I'll repeat my advice in the second point above: read about the survivors:

http://nosurrenderbreastcancer.websitetoolbox.com/post/show_single_post?pid=32135463&postcount=22

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com 

Limner

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Reply with quote  #6 
Edge, you are just awesome.  XO Mary

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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
MsBliss

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Reply with quote  #7 
I concur.  I am constantly amazed at Gina's and Edge's contributions to this forum.  I want them to know it is not going unnoticed. 

Quote:
Originally Posted by Limner
Edge, you are just awesome.  XO Mary
MsBliss

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Registered:
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Reply with quote  #8 
ZR--re the tylenol for children issue.  I notice that people at pharmacies can be very impatient and beligerent.  This behavior is a phenomenon that a store manager also has mentioned to me.  I for one would never fault a pharmacist that is just being careful with a pediatric rx.....that is what you as a professional are supposed to do.  Don't be hard on yourself!  You were right to verify!  The opposite is much, much more dangerous.

Quote:
Originally Posted by zenrookie
Susie was getting headaches a few weeks ago.  They did a scan, and on the worst possible day we decided to bring my oldest daughter for some trip to the mall after the doctor visit.  Since the beginning, my wife's worst fear is that the cancer would go to the brain and it has.

Our Oncologist said that this is bad.  THat if there were a stage 5 she would be in stage 5.  The Rad trial was discontinued, and we were kind of handed off to the radiation department down in the basement. 

Large doses of Decadron.  A wild custom made mask for Susie, and for a little more than two weeks, each day she gets radiation zapped toward the many lesions within the brain.  This new doctor is very tight lipped, very grim and since we live 3 hours away, we have a family friend who has let us stay at her apartment with her (she lives alone) during the week. 

My patience seems gone now.  A prescription was brought to pharmacy and it was written very oddly. Basically I'll translate the half latin, half writing. It said, dose for a child 6 months acetaminophen to be given every 6 hours.  I had slept on my shoulder causing bad pain which must have lowered my tolerenace to stress, etc.  But the grandmother was in the pharmacy window demanding the medicine like it was fast food.  Somewhere in my head was a warning that has come out this year advising about dosing children under two years old with over the counter meds.  (and acetaminophen is an over the counter med)>  At same time two other customers are demanding their prescriptions now. My staff is frozen, all waiting on me to render decisions on all of these and render them fast.  I start with the acetaminophen. On top of the piece of a report I remembered, but couldn't remember verbatim, I chose to say to grandmother, I am sorry but I am not comfortable filling this prescription now.  (tried to move on to the next rx problem which was more computer science oriented which wasn't what I signed up to do for a living.  While trying to get this impatient person out of there, the grandmother has lit up the switchboard at the doctors' office. Either a physician assistanct or nurse practicioner, starts conversation off wrong.. a little heavy on attitude which says, I wrote the prescription, fill it.  For many pharmacists that's fighting words, because by law you don't have to fill anything. You may lose all your business, but if you have reason to pause on it or feel uncomfortable about it then you are in the right.  It escalated and all my tension, stress, everything melted into just a raised voice ..well I was yelling. That said I didn't have to fill anything if I had reservations.  THey called two more times, one of the last ones was for me to stop everything I was doing and locate the specific document that made me hesitate on rx in first place and fax it to them.  Of course I don't have this. It is a series of warnings I had heard for past six months.   I get really bad, anger is unchecked.  Turns out, I'm wrong. It is for products such as "Tylenol Cold, and "Tylenol Cough"..not a prescribed tylenol which if seen by practicioner, it's cool. Maybe still not great for a six month old that in clinic had no fever when they checked him, but still. to this entire clinic, Im' the devil.

I'm simply scared to death. Don't know anything about radiation.  Wife's headaches make her cry as she cries for help for them to stop. Doctor is kind of acting today after week of treatment like headaches should be gone and you get the vibe we are being thought of as narcotic hunters.  My wife has cancer that has spread to her brain and she has headaches that make her head hurt!  Dr.'s name is so long they just call her Dr. Chek at Vandy. 

Wife terrified.  Having to live apart from our two daughters during week; I stay two ; hopefully three next week to oversee and take care of them; I'm getting better with my youngest whom has autism; she is enjoying the new playmate found in me; and taking pressure off of mom. 

I'm lost. I'm tired, I'm angry, and I don't seem to be able to hold it back any further.  but then again I'll awake tommorow and it will work out, I'll be at her side ready to fight this thing again. 

ZEN
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