Topic: Scan done..now the wait

My husband had another CT scan today, to see what the radiation has done to the ICC and to check his lungs and abdomen.....now the "long" wait to see the Oncologist for the results this afternoon.  I have butterflies in my stomach!

Re: Scan done..now the wait

Stella,

Thinking of you and your husband.  Hope all turns out well.  Let us know when you have results.  Fingers crossed for the best.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Scan done..now the wait

Stella...butterflies here as well.  Wishing for the absolute best news coming your way and can't wait to hear all about it.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Scan done..now the wait

Well, it's the worst news we could have wished for.  The cancer has spread extensively.  The radiation did nothing to curb the growth of the original cholangiocarcinoma which has actually grown!  We have a 2 page (A4) report of where all the cancer has gone - and this in 4 months.  Also there is fluid in the lining of his lungs and in his abdominal area.  Not good news at all.  I dont know what else to say...

Re: Scan done..now the wait

Dearest Stella, I am so very sorry to read this, not what you wee expecting at all. Did the ONC say what may be tried next? This is some pile to digest when I know all you want to do is spit it all out! Know that we are all right with you in spirit and sending big hugs. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scan done..now the wait

Dear Stella,

Not the news you were expecting or wanted to hear, but I'm hoping that once the dust settles a new plan of action will be put in place.  Know that we are all here to help and support you in any way that we can.  Thoughts and prayers coming your way.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Scan done..now the wait

Stella I too am sorry that you guys didn't get the news you were hoping for.  I noticed you mentioned something about fluid in lining of his lungs.  I had that recently as well and there was some discomfort associated with it (shortness of breath and some pain depending on how I moved by body). Did they give you any options regarding the fluid?
Hugs and blessings you guys and I too hope that once things are a little more settled that they will have a new plan of attack.  Take care.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Scan done..now the wait

Stella,

I am so sorry that the news you received was not good.  As others have said, once the initial shock wears off, I hope there is a new plan of attack that will give you hope again.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Scan done..now the wait

Stella...so very sorry to hear the news.  Most likely the doctor will prescribe medications to reduce the fluids and treat your husband for all other symptoms accompanying the progression of the disease.  Please stay with us - we are here for you.
My heart goes out to you,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Scan done..now the wait

Thanks all.  I have been Googling the info on the scan report.  The cancer has spread even further than what the Oncologist in his wisdom, told my hubby.  There are just some things not worth telling him.  He sleeps most of the day.  We are considering chemo to help releive the discomfort and hoepfully give him some stronger days.  Not sure what to expect or how long this will carry on.

Re: Scan done..now the wait

Stella - very sorry to hear this news.  Thinking of you and your husband.

Re: Scan done..now the wait

So sorry Stella.  I haven't had good news  after any of my treatments so far.
I know how discouraging this is.  I hope & pray you can have some comfort & peace.

Re: Scan done..now the wait

Dear Stella,

I am sorry to read this news.  It is a real blow and you must wonder where to go from now.  Once you have had time you will find the resolve to go on and help your husband in other ways. x

Clare

In the stars now . . . .

Re: Scan done..now the wait

It's been a tough day today.  Trying to get all the paperwork sorted, documents signed, house onto my name.  Hoping there will be enough time for him to assist me with his wisdom.
He has much backache which is probably from the cancer in his lymph etc.
The oncologist has not mentioned a plan of action regarding the fluis in lung linig or abdomen.  However, our doctor mentioned to my daughter, that they could look at draining it.  Will it help or cause more damage?  His abdomen is very swollen and often seems to spread out in different directions.  He has lost 10kgs but that is all in his shoulders, arms and legs.  Abdomen seems much bigger than before.
The Oncologist has suggested trying chemo to assist with the discomfort.  We are waiting to see if the medical aid will approve it.
How long can this go on?!

Re: Scan done..now the wait

Hi Stella,

I'm very sorry. Don't know if this is the case with your husband, but my husband's huge stomach bloating was due to ascites. His doctors ordered the fluid drained, but took too much at once, upsetting the balance of chemicals/electrolytes in his body and he wound up with acute renal failure where he'd never had kidney problems before.

Because of that, he was not able to take the same regimen of chemo, because one of the meds (can't remember which one of the gem/cis cocktail) stresses the kidneys and that would have exacerbated his kidney problem. The doctors from then on had to work hard to avoid kidney failure.

The acute renal failure severely limited what my husband could eat, and he was already able to eat only limited items. It became a huge issue for us, trying to decide whether to drain or if he should put up with the discomfort.

I know this is a chaotic time for you. Try, if you can in the midst of all the medical decisions and urgent needs, to spend some time with your husband trying to soak up his love for you and yours for him. Make a little video if you have the chance. You will cherish it when things are no longer hectic.
Sending you wishes for strength,
Love,
Margaret

Re: Scan done..now the wait

Stella, I am so very sorry as I know all too well what you are going through. I do have an article called "10 Signs The End is Near" that I can e mail privately to you through the site only if you want it. Everyone is different by my Teddy followed it very closely except for #10. Sometimes the more you know what to expect helps. It is almost like the one Hospice uses. Has the ONC said anything about Hospice? They usually can be ordered months ahead of time and they are very good. The bottom line is to keep your husband as comfortable as possible. I am with you in spirit and sending giant hugs to you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scan done..now the wait

Stella,

I too have been where you are now and feel that keeping him comfortable and pain free as much as possible along with spending as much quality time together as you can is most important at this stage.  Take care and know that you and your husband are in my thoughts and prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Scan done..now the wait

Yes Lainy, please email the article to me.  I feel knowledge gives my more control as if I know what to expect, I know how to react. Thanks so much.

Thanks to all for your words of encouragement and understanding.  Often we care-givers feel so alone.

This evening, we decided to sell my Isuzu twin-cab.  I have had it for 14 years and it has taken us many outback places.  But we need to sell it and my daughter's old car to purchase a reliable car for her.  I will have my husband's fairly new car.  It is really tough to make these decisions but I am fortunate to have him clear minded and able to advise me.

Re: Scan done..now the wait

Stella, not that I need to be cloned but you so remind me of me. We talked a lot Teddy and I and he helped me plan everything out. Even his Memorial Service. It is what it is and he liked that he could have his input on everything. I just believe the more one knows the more they are prepared. Not everyone can handle that but it worked for us. One of the hardest things for him was to sell his electric golf cart!! He was a Shriner and  about 8 days before he passed he even insisted on going to a Shrine lunch to say Goodbye. That little guy was one of a kind. The more you do now the less stress later. If I can just give you one hint. Go somewhere private and let it all out now and then, I held it all in as I felt I had to be so strong....I am paying now for the stress I did not let out. I am sending the list now and if you ever have any questions please feel free to email me. Love........

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scan done..now the wait

Stella -
So sorry about how the scans turned out.
I would definitely see if you have a hospice nearby that would be available to assist, especially if your husband opts not to do any chemo. They would really be a valuable assets for you too.
Also the fluid around his lungs and in is abdomen can be drained. Carefully because sometimes there are reactions such as the kidney failure as has been mentioned. They are usually fairly easy outpatient procedures. I would suggest that if you talk about doing it that you discuss putting a drain in his abdomen and having it left in. As scary as it sounds, you could be taught to drain it at home for comfort. Same for the lungs too if the fluid builds up rapidly. Even if you opt not for hospice maybe you have visiting nurses of some sort that could help especially with the drains.
You are going through a tough time and remember that no matter what we are here for you. Also remember to take some time for yourself to de-stress...I know easier said than done.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Scan done..now the wait

Stella,
I, too, am sorry to hear of the results, and your husbands ascities.  I, too, suggest you discuss having some of the fluids drained, as it will ease his discomfort. I hope the docs can come up with a new treatment plan.
It's so hard to be strong... I am glad to read that the two of you are there for each other, and you have him for guidance in this difficult time.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Scan done..now the wait

Stella,

If there is anything good to be said about your situation it is that you two are able to discuss and make decisions together.  In my case things happened so quickly we didn't really have a chance to talk about anything and I was left to work through everything on my own.   I did find out that I was a lot stronger and more capable than I ever thought I could be.   

Wishing you both the best and know that no matter what, you will get through this.  Just take it as it comes.  One day at a time.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.