Reduction in Oxalaplatin without exam
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Dear John,
I am so sorry for your loss and deeply saddened by the progression that lead to her passing. Yes, only time will help to ease your pain. No one knows why things go they way they do, but you do have some valid thoughts and questions. Yes, you do deserve answers and in time I am hoping you will get some. Although it will not change things, it may be of help to others in the future.
In time I am hoping your heart will heal and you will be able to take some comfort in the good memories of the past. Keep her with you forever in your heart and those memories. Slowly the others will fade.
Please feel free to come back now & then. Know that we are here to help and support you in any way that we can.
Thinking of you and your family at this sad and trying time.
Love & Hugs,
DarlaJohn….my heart goes out to you in this difficult time. I hope that time will help heal your heart and for your pain to ease.
Thank you for taking the time to point out the need to be fully informed when undergoing treatments for this disease, as it is becoming standard practice for patients/caregivers to do just that.
When the time feels right, you might want to discuss with the physicians their rationale for the decisions made and whether it impacted your wife’s rapid decline. You are entitled to be given answers.
Hugs and love,
MarionDear John, I am so very sorry to read about your wife and what she went through. I went through something very similar here in regards to Hospice. I am going to wrote you in a private e mail. In the meantime may I extend to you my heartfelt condolences. Things do get easier with time.
From your wife to you so to speak:
If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.This I suppose will be my last post ever. My wife died a pulmonary death from increased lung metastasis on Dec. 11, 2014. Things started changing just before Thanksgiving. Otherwise she was doing quite well on FOLFOX.
My wife’s oncologist and the oncology resident at the University of Wisconsin Carbone Cancer Center, late in September( on a regular monthly visit) heard my wife mention that she did not like the numbness and tingling in her hands and feet. Without examining my wife’s sensation or reflexes
in her legs, the two of them decided it would be a good idea to lower the oxalaplatin dosage from
100 to 75. I thought this was wrong without examining her to see how it was affecting her life. Since I am a retired doctor, I asked my wife to stand and perform tandem walking, one foot in front of the other, and then stand with her feet together eyes closed (the Romberg test). She did both perfectly well. I thought this would stimulate the doctors to check the reflexes and sensation but they did not and convinced my wife to agree with lowering dosage. Another lowering from 75 to 50 occurred in November, again without any exam or history taking of how the numbness was affecting her. I know that before stopping or reducing the chemotherapy the numbness (Neuropathy) needs to analyzed as to its severity. Also they never informed her that the dose reduction might cause the cancer to get out of control again.I knew this might increase the activity of the cholangiocarcinoma but I felt helpless against the power of the doctors. I also thought that MAYBE they do know what they are doing. How wrong I was. Of course there is no proof that the lowering of the dosage caused the ca to start rampaging through my wife’s lungs, but it is a strong consideration.
Of course I am grieving, but have also strongly complained to the clinic about the reduction in the dosage
of the chemotherapy without an exam or decent history as to how the neuropathy was affecting her. By the way she was never asked if she was stumbling, falling, etc. and of course she wasn’t as I showed on her exam.
The lesson is NEVER be afraid to complain vehemently when the oncologist is about to do something you think is wrong. Also I wonder if this oncologist (and others) does this reduction frequently without analyzing the problem and therefore other patients are dying before they need to.
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