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mrsb

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Reply with quote  #1 

I went into to see the oncologist yesterday expecting to have apps for some steritaxic brain works my MRI had shown new lesion. as many of you may know I also have lung Cancer which was isolated and removed,The brain me ts are due to lung Cancer.At the time in my consultation with lung oncologist and lung surgeon they felt no chemo or follow up was needs. the neurosurgeon and radiation onocologist(the good one) are taking care of the head. My oncologist was herself sick and despite request for follow on the lungs didn.t get any(i Had  lung surgery in September.  weeks ago my regular oncologist returned agreed that i needed 3month MRI for brain and was not pleased that lung followup was not being done,Hence the ct scan last week.The oncologist who is very pessimistic said i had all these spots on my lungs. he did not have report ,only printout off computer. the thing is i have along history of nodules which have been followed for years and remained stable. i am pretty sure  the Ct's scans from last 10 years were not compared.He told me i had about 6 months to live and go and enjoy life.He said that they would not treat me. Then I got mad and demanded to be seen by another oncologist who specializes in lungs.My hubby is going to call and demand that they compare the Ct's.Need your prayers and hopefully Constantine will have some suggestions. I feel like i have been discarded like a piece of garbage. I have an appointment  with my regular oncologist next week she is much more or a warrior.Shelagh
nosurrender

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Reply with quote  #2 
Oh my word! Dear Shelagh! What is this cretin's name? What a horrible person.
Does he have a crystal ball? If so, I would like to know what tonight's Lotto Numbers are.

You must go to someone else. Have someone who is a warrior as you said look at your previous scans and compare them to the most recent ones. Are you on the Edge Cam? The Boswellic Acid has done wonders for brain mets.

We are all behind you and praying for you and fighting for you!

Love always,
g


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MicheleS

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Reply with quote  #3 
wow. just wow.

absolutely demand another opinion!!!!!

{{{hugs}}}

mrsb

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Reply with quote  #4 
The original Lung oncologist called me on the phone(i think it was alittle cover my butt call) they did compare the old and new cts so there is definite progression in the lung. He is meeting with us next week to discuss any options. I will see my regular oncologist Tuesday so i know she will fight for me.He did mention that i had done well getting a year. I made him call my husband as i was crying by this time and my speech getting slurred.at the end of the conversation he wanted to put his thinking cap on and askeds several times whether we had drug coverage.So all prayers to get me through the weekdend. Thankd god for Ativan
edge

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Reply with quote  #5 

Shelagh:


First, to action: generally, a multimodal approach is  viable, consisting of:

 

(1) local treatment (LT) which includes:

 

  • stereotactic radiosurgery (SRS) for the CNS disease, especially GKS (gamma knife surgery) which can reduce tumor burden, and
  • radiofrequency ablation (RFA)  for the lung/pulmonary disease (if no further surgical resection is viable);

 

(2)  systemic treatment in the  form of chemotherapy (CT).

 

Local treatment options should be assessed and explored with an interventional radiologist, or - if available geographically - an RFA and/or GKS center. 

 

As to systemic treatment via chemotherapy, as I note in my CNS Review for breast  cancer brain metastases, where the options are not substantively different for LC (lung cancer), my guidance and that of many  leading neuro-oncologists is that the efforts should concentrate on chemotherapies which have some appreciable evidence of cross-BBB (blood-brain barrier) capability, and for lung cancer that includes of course most especially, temozolomide (TMZ) which has been used for brain metastasis from both SCLC and NSCLC.  In addition, as with breast cancer, vinorelbine (Navelbine), the platinum agent cisplatin, and possibly also gemcitabine (Gemzar) although from the weight of the evidence TMZ,  vinorelbine (Navelbine), and cisplatin would appear most promising.  By combining tumor burden reduction via local treatment - GKS for CNS disease and RFA for lung disease - along with systemic chemotherapy with potential cross-BBB activity (as noted), the potential to favor and prolong survival outcomes is  maximized, generally with acceptable patient tolerability. 

 

On the systemic front, what is needed is a forward-thinking oncologist who should be able to direct and manage the interventions, as well as coordinate them with local (GKS, RFA) treatment. This may require some pursual via second and third opinions, and two tips on this front: first, some lung oncologists may be able and willing to handle the challenge but don't overlook community oncologists, who by virtue of their unique experience are often surprisingly bold and innovative, and second, you may want if possible to seek the  opinion of a neuro-oncologist with experience in lung cancer CNS disease.

 

But as you can see from the above, there are viable and promising options have not been explored, and need to be aggressively, and palliation without any intervention is more a matter of insufficient imagination, or true commitment, or both, to the goals of the patient, and can be an excuse for, and an exercise in, defeatism.  As I say often, we are  in the business of saving OR prolonging lives modulated by patient-directed goals of both aggressiveness of interventions, and patient-acceptable QoL, and although the exploration of these is of course in consultation with oncology professionals, it cannot be without the patient's perspective and critical direction.

 

As you can see from the above, this is not the end of the story (which is ultimately the patient's decision) by any means, nor  the end of hopeful options for maximizing survival.  And whatever the journey you will embark on, and whatever the  battle you will engage, we are all with you, not just behind you.  The name says it all:

 

No Surrender.

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatc.com

mrsb

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Reply with quote  #6 
Thank you Constantine for your rapid response. I sat in front of the computer crying when i read it... I had done some research so i knew there were some options. It is a horrible feeling when one feels one is treated as disposable. I have an app with my much loved female oncologist who will likely have somenthing organizes when i see her Tuesday. Funny the lung oncologist changed his tune when my husband wouldn't let him of the hook re post lung surgery follow up and lack of treatment,all of a sudden he was going to put his thinking cap on and see us next week. Hopefully the neurosurgeon who was planning on zapping the new brain mets will still do it. I will report back next week after a treatment plan is in effect.
Shelagh
DoreenF

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Reply with quote  #7 
Shelagh - you have certainly been through hell this week ...  sending you a great big hug ((((((Shelagh))))))) and letting you know that you are in my thoughts and prayers.  I hope your team of doctors will come up with a treatment plan for you quickly that you feel comfortable with at that you can tolerate it ...  and even more so that it works!

Hugs,
Doreen


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"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto.
edge

Chief of Research
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Reply with quote  #8 
Shelagh:

You have no doubt been casually and inconsiderately treated: the "tone", what I call the therapeutic posture, of a management plan should draw from and be informed by the patient's stated preferences as to aggressiveness of treatment, given the understanding and acceptance of tradeoffs (which I have absolutely no doubt you fully understand), and it's the patient who, albeit in consultation, must critically "sculpt" the rhythm and pace of treatment, whether in early or in advanced disease.  We  can never take the patient out of the equation.

Kudos to you, though, in standing your ground, and I am impressed in the change of attitude you've induced in your lung oncologist!

Best fortune, and we - the No Surrender community - are here whenever you need us.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

Calico

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Reply with quote  #9 
Shelagh,
sending you hugs and prayers!


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Debris

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Reply with quote  #10 
Shelagh, praying for healing, strength and courage for you. Keep fighting! God Bless.
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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
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mrsb

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Reply with quote  #11 
Thank you all for the words of comfort and hope.my stomach is in knots but i have been keeping myself busy scrap booking my little grand d daughters photos she is 5 weeks today.We decided ided not to say too much to our girls until we have meet everyone next week and have a plan.once again thank. Shelagh
nosurrender

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Reply with quote  #12 
dearest shelagh,
My prayers and love are with you. You are so special to me.
This song has always helped me.
love to you
g



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Calico

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Reply with quote  #13 
Shelagh,
you are a warrior,
I think sorting pictures regardless of dx is a good fun thing to do, I bet the little one is adorable
Prayers continue!!

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Primel

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La Deesse
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Reply with quote  #14 

(((((((((((((shelagh))))))))),

your fight is inspirational...

Sending warm thoughts and encouragements,

Catherine
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