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@burrkay

Posts: 67
Joined: Apr 21, 2016

My wife has had stage IIIb lung cancer.

Posted by @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!

Liked by emmur16

REPLY

Hi @burrkay, welcome to Connect.
I’m tagging @major @sunnyside @buddyotto on this discussion because they talked about lung cancer here in the community too, and they may be able to share about similar symptoms.

Waiting for results is certainly agonizing and unfortunately is a situation that many in cancer care have experienced. @martid @sue_in_delaware @travelgirl @hopeful33250 can all attest to that.

When do you expect to hear from the oncologist?

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.

Sorry about your wife. I do think your in good hands being in Rochester. I know waiting for results and answers it brutal. But please remember your at the best place for her treatment. I hope you get your answers soon. I wish you both the best.

@travelgirl

Sorry about your wife. I do think your in good hands being in Rochester. I know waiting for results and answers it brutal. But please remember your at the best place for her treatment. I hope you get your answers soon. I wish you both the best.

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Thanks! She had her surgery in Rochester…but we see an oncologist in Jacksonville (Mayo)…I agree that the care is excellent. There is a sea of patients out there though, and at times even Mayo docs get overwhelmed.
We did finally get a telephone consult with the oncologist, and he gave us some positive feedback. The tests came back negative for adrenal gland cancer…but still no explaination for the symptoms or the low plattlet count,

@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?

@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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Best wishes to you and your wife. I  hope that you get the answers and a good plan for her current problems.   It is good that she has breaks from the difficult symptoms where she feels and looks good.   I commend you both in that you are getting some state-of-the art medical care.  I had not previously heard of the VATS procedure, but from a little investigation that appears to be a great alternative to more invasive types of surgery. You and your wife seem to be working hard to get answers.  I know that Mayo Connect has certainly be a help to me.  I agree that the wait for test results and call backs can be very frustrating.  Colleen and the support group are such wonderful, encouraging resources. I encourage you to keep sharing.  This is the place where you will find help and understanding!

@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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Thanks a bunch Hopeful! No answer about the low platelettes. The oncologist says her number is low, but not to be concerned unless it drops to much lower. I understand it can be an after effect to the chemo chemicals. Don’t know if it will regenerate or just what the next step might be. The oncologist was upbeat, and says he will see us back in 3-4 months. In the meantime they will continue to intermittently do labs to check the platelettes.

“Spread the Laughter, Share the Cheer,
Let’s Be Happy While We’re here!”

…and so it goes!

It sounds like you have well placed confidence in your medical team.  That is so important!  Best wishes to you both.

Liked by emmur16

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

@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 did chemo and radiation in 2009 thru March 2010 then i had a thoracotomy ( Vats)@ Mayo- Dr Shen was my surgeon and he is awesome. My platelets have never been normal. I run below the normal range ever since. -Lynn
PS recently Opdivo ( Nivolumab) was approved also for lung cancer ( just approved for several other cancers as well-it’s immunotherapy) ..I was dx’ed with stage 4 melanoma in 2009.) It is easy on the body with little side effects for most people. FDA expands approved use of Opdivo in advanced lung cancer
Opdivo demonstrates survival benefit in squamous and non-squamous non-small cell lung cancer http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm466413.htm

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

Nice to see a photo of you @burrkay.

@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!

@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).

@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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