My wife has had stage IIIb lung cancer.

Posted by All_in_1963 @burrkay, Apr 21, 2016

My wife has had stage IIIb lung cancer. She had 2 lobes removed in Rocheser using VATS procedure in May, 2015, had 4 rounds of chemo coctail, and has gone back to Mayo for followup.
She has recently experienced low platelettes (81k/uL)
Asside from the low platelettes she looks and feels great! Although she has had several episodes of high temp and elevated BP that last for approximately 30-60 minutes.
Our oncologist is pursuing the issues and labs, but we are wondering if anyone has experienced similar symptoms. IF so, what have you been told?
The waiting for the oncologist to tell us his plan is agonizing!

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@lynnkay1956
Thanks for the comments on platelet counts. That’s encouraging!

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Nice to see a photo of you @burrkay.

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@burrkay

The PA phoned with the results as “normal”…platelettes at 81/k seems low to us, PA says they don’t transfuse unless the platelettes are 20 /k…
Not looking for a transfusion, rather a diagnosis of what the root cause is for her symptoms!
Asked for further clarifications…trying to be vigilant.

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I have seen the ads for Opdivo…but, I understand the costs are horrendous and it will likely extend the life of the patient only several months. Is that correct? If so, only the very wealthy will get the treatment!

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@colleenyoung

How are you and your wife doing these days @burrkay?

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She tires easily, but tries to stay upbeat! Still has a deep bronchial cough and occasionally belching at night, (which was to have been corrected by the nissen fondoplication surgery about 18 months ago).

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@colleenyoung

@burrkay – that is one piece of good news, no adrenal gland cancer. I hope they get to the bottom of the platelet count soon. What will happen now? More tests? Platelet transfusions?

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No transfusions at this point. The oncologist in Jacksinville is not concerned with it!?!?

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@colleenyoung

How are you and your wife doing these days @burrkay?

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Good morning @burrkay. It appears that we’re both having our morning coffee at the same time as catching up with messages on Connect this morning. I admire your wife’s efforts to stay upbeat. The fatigue from cancer is a fatigue like no other. She is lucky to have you by her side just to be there when even conversation is too much.

How are you doing yourself burkkay? Speaking frankly, caregiving is all-encompassing, physically and emotionally. It’s 24/7 and typically caregivers find little time or space for themselves. I hope you know that here on Connect you can speak about the tough stuff too.

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@colleenyoung

How are you and your wife doing these days @burrkay?

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Thanks!
Yes, it is tiring…but, together we are determined to beat this ugly disease!
I am holding up pretty well.
However, my biggest frustration is the difficulty of communicating with our oncologist at Mayo. Understandably, he has a huge contingent of patients I am sure; and can’t respond to each individually. However, his staff just don’t seem to get it sometimes.

Example-like many we travel long distances to the clinic, requiring overnight stays. With the uncertainty of what he will find with the blood tests and scan, why do they schedule appointments late in the week? If she needs treatment of some kind, that would likely require a return trip, simply because it’s Friday and he wants a bronchoscope for example???

Communications seems lax at times!
The wait and apprehension between visits is mentally exhausting for both!

Otherwise, we are doing fine.

Thank you again for your concerns.

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@colleenyoung

How are you and your wife doing these days @burrkay?

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Hello @burrkay I admire how hard you are working to ensure that your wife gets the best treatment possible. Overcoming frustration is a tough task, no doubt. Have you explained this particular frustration with the doctor or his staff? As your written communication seems very effective, have you tried writing and either faxing or emailing your concerns? It might be very worthwhile. Best wishes. Teresa

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