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Update...Praying for NED

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Update on my father...yesterday (Feb. 21) was his last chemo treatment with 7 radiation treatments to go!!!  I heard a recording of the radiation oncologist meeting and he said his lungs sounded clear (fingers crossed)!!  When he got home he ATE!!!  He has been unable to eat very much at all...he kept a small glass of baking soda water and took tiny sips to eat any food.  His follow up CT scan is scheduled for April 3rd and I am praying for NED!!!  He was not a candidate for surgery, so, I know that is probably our best hope and it is mine.  I haven't seen my father in at least two weeks.  I am a guidance counselor with a 9 year old and the FLU is terrible here.  We are both (me and son) terrified of bringing a germ to him.  I am hoping we will get to see him this weekend.  My sons has a runny nose and slight cough...so, we may wait a few more days.  It is so difficult.  I am so nervous and optimistic about him feeling better.   He was so physically strong and enjoying working outside before.  My mother said yesterday it will just make her day if he feels like going outside and sitting on the porch.  It is truly the little things. 

Praying for NED!!!

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I am confused...as usual.  My father is going for his scan April 3 and today (03/06/17) was his last radiation until... He was given an appointment card for radiation for April 4 until ???  Is this typical?  Do they not need to see how or if the tumor has changed before restarting radiation?

 

Thank you!!

Nicole

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Nicole,

It is not unusual for there to be a delay between the end of scheduled radiation and a scan, but normally that delay amounts to about 2 weeks.  Still depending on how busy the center is, a nearly month long post treatment center is not very unusual.  Moreover, scheduling additional radiation in advance is actually a good thing.  It tells me the radiation oncologist believes additional radiation can be performed if necessary.  As I recall, you reported he did not tolerate chemotherapy very well and radiation was therefore his only treatment alternative.  Might a appointment for additional radiation treatment if necessary be a good thing?

And yes, normal treatment protocol is to assess the treatment effect before deciding on further but scheduling it in case I think is prudent and telling.  

Stay the course.

Tom

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We got the results and while it wasn't NED it was FANTASTIC news.  He has greater than 50% shrinkage in the lung and in some lymph nodes greater than 75% shrinkage.  He will do 6 more chemo treatments and meet with the radiation oncologist tomorrow.  His chemo schedule is 1 treatment once a week for two weeks and then a week break.  We are so pleased and thankful for the news!  

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Nicole,

Right you are FANTASTIC is the word.  Keep his sprits up.  Remember, I believe attitude counts.  Everyone should be cautiously optimistic but optimistic nevertheless!

Stay the course.

Tom

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So, my father has completed this last phase of treatment.  He had a CT and has some fluid and lung damage due to the radiation.    Lots of lung damage.  His next CT is in September with contrast.  He is going to see his pulmonologist to see about a plan for the lung damage.  

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No, they didn't focus on the cancer.  He has a central lymph node that appeared the same, no worse/no change.  The focus was on the scarring and he has fluid in his lung.  He is going back to the pulmonologist.  

It's the strangest thing...he has no energy and cannot "get his breath". He says he gets short of breath and then feels panicked and that makes him more short of breath.  It is worse at night and in the morning...I guess because he is stirring around more???  It takes a lot out of him just to take his shower.

 

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Nicole,

Has your dad ever been tested for sleep apnea?

This disorder is normally diagnosed by a sleep study. This could explain his breathing while sleeping difficulty. Ensure someone alerts the pulmonologist to this possibly. 

Stay the course.

Tom

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Hi Nicole,

Is your father sleeping (or trying to sleep!) flat? If so, he might try  a wedge pillow to elevate his chest and head, which makes breathing easier. A 12 inch high wedge gives about a 45 degrees elevation, whcih was what was recommended to me by the hospital.

Bridget

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Thank you!  He doesn't sleep flat.  He is going to the pulmonologist Wednesday.  I just hope the doctor gives him some hope that these symptoms will improve.  My father is used to being "busy" and now it takes a rest break to put on his socks.  He is so discouraged.  If he could just breathe a little better...it would make all the difference.  He started using his nebulizer and inhaler today.

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Really great!!!  He was prescribed 10 mg of prednisone 3x a day and oxygen at level 3. He is on 10 mg once a day now.  Also, ( this is the best part for him and us) he goes out everyday and works around in the yard for a little while...something he adores doing!!!!  His hair is coming back in really fast and with the prednisone he has gained about 5 pounds...he lost about 20.  We are all so thankful.  He has a follow up appointment with radiation next week and then in September with his chemo oncologist and pulmonologist.  Thank you for asking!!!!

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So glad to hear it! Thank you for the update! I hope his follow up appointments go well. We'll be thinking of you and your family. Please keep us posted!

Lauren
--
Digital Community Manager
LUNGevity Foundation

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