Topic: prognosis advice

Not sure if this would be the right forum to post in or not. My father is no longer taking treatments. He has several spots in the liver with one inparticular that is growing. Also found 2 spots in each lung base 2 weeks ago. The chemo did not work, and he has decided against any further treatments to gain a better quality of life. My question for any of you out there who have had similar experiences, is what time frame are we looking at before he is "debilitated"? We were told originally 6-12 months, but his wheezing is getting worse. The reason I even ask, is that we are planning to take a family vacation together for his 60th birthday in April. Although the doctor said it sounds "feasible" I have had others to tell me not to wait that long, that we probably do not have that much time. I just don't know what to do. We are all still in such shock.

Re: prognosis advice

Oh, ANP, it is so hard to say. We were given the 9 month deal for Teddy and it was 5 months. I think if you Google Hospice they have a good time line you can read up on. As I do, listen to your gut feeling.

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: prognosis advice

I agree with Lainy - go with your gut.  My son was doing fairly well and then got poorly only 2 weeks before he passed.  Everyone is so different with this disease.  However, I always say don't put anything off.....do it now while you know you can. - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: prognosis advice

I agree with Lainy and Nancy - I would not wait. Go now while he is feeling ok. The future generally doesn't get better, so enjoy every day and the sooner the better especially for a trip. Let's hope and pray that he gets many months of good quality life, but in case it doesn't go that way, you'll have the memories of this trip. Hope it is wonderful. Blessings, Susan

Re: prognosis advice

I agree go for it now.  Talk to the doctor to find out what restrictions that you may have to work around, like walking alot, going up or down hills, and let him rest a lot.  They get so tired so easy, and if he is like my husband, he want complain that much, but look at his face, you know him better than anybody.    My husband had been in a wheelchair since 1988, he would get worn out just transfering from the wheelchair to the vehicle.  Sometimes when he got into the car, and we would get where we were going he would say you want be long I'll just wait in here.  A riding tour at a park would be great, you may only get to do half of what you had planned but the time together, will be worth it.  Remember all meds.  I wish we would have had the opportunity, my Wayne went down to fast.  So go for it, NOW!!!!!

Love to my Wayne for 36 years
I'm not a widow, I am a wife
We are only apart for heaven's sake
You are waiting for me at heaven's gate

Re: prognosis advice

I agree with everyone - go now.  I don't know where you're going, but just look into the facilities in the area in case he needs any medical attention, and take his records and a list of meds with you.  Enjoy his 60th birthday celebration a few months early!

Every case is different.  But my Mom stopped palliative chemo last August.  The next day she booked a cruise for the whole family - her, my Dad, us 3 kids, spouses, and 5 grandkids.  We left on September 9.  She died 8 days after we returned from the cruise.  Traveling was a little tough, as she did begin to decline while on the cruise.  (We're lucky that my sister is a hospice nurse.)  But it was so important to her, and the memories we all have from that trip will be with us forever.

Go with your gut feeling!

~Kim
my mother lost her 16 month battle with CC 9/26/10
"Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined."

Re: prognosis advice

Dear Anp,

My Dad also has no treatment options left and we were told 3-4 months in September.  He is doing well considering, jaundice, weight loss and tiredness being the only physical symptoms at the moment.  Is your Dad taking any supplement drinks? only my Dad was breathless a few weeks ago and since re starting these drinks he has been much better.

As for the holiday I would go now, you can always do something else special in April if your Dad is still well enough. 

Best wishes

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: prognosis advice

To all,
Thank you for your responses. The information is certainly helpful. I feel like taking a trip sooner is most likely the better option, just really hoping that a birthday trip was possible. Plus, waiting for warmer weather would be nice too. Just in the past 2 weeks, he has seemed to get progressively worse. I posted yesterday that the wheezing had worsened, and today he is out of breath just from a short trip to the doctor and the store. Is it normal for the symptoms to progress this quickly? Or is this something that could go on for a long time?

To Andie - He takes supplement drinks from time to time but nothing consistantly. When he does, it is usually because of his blood sugar levels. (He is diabetic also.) His appetite has lessened. Not eating often, but when he does, he eats well. I will mention that to him.

Lainy, I also wanted to mention that I have been following many of your posts, and the way you stayed so positive throughout Teddy's illness was an inspiration. I am so sorry for your loss. Thank you for all your help on this site!

Again, thank you to everyone for your insight. I am looking for any and all information I can get.

Re: prognosis advice

ANP - I think it might be a good idea to find our from the doctor if there is any other reason for his breathing issues.  It really depends -- I think -- on what is causing the wheezing in the first place.  Is it related to the lung involvement?  Is he retaining fluid?  Maybe there is something that could help him (some oxygen periodically???)  I'm not in the medical field so I am only speaking from my experience.

As far as deterioration, we have all found that each person's situation is very different so it's hard to say.  Wish I could tell you something more concrete, but that wouldn't be helpful.   Please keep us posted - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: prognosis advice

Dear ANP,

New Years Eve my Dad was really breathless, so much my Mom wanted to phone the doctor, this came on quickly over 2 days.  We don't know if it's a coincidence but the next day his external drain started to block.  The DN flushed his drain and at the same time he restarted taking his fortijuice drinks twice a day.  He is hardly breathless now.  We think the drinks are helping him as when he stopped taking them his breathing was worse, the doctor had checked my dad chest and stomach for fluid but they were clear so he has put it down to lack of nutrients.

Did the doctor check your Dad's lungs. chest and stomach yesterday?

Does your Dad have a stent or any signs of jaundice? as this can also cause you to be breathless.

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: prognosis advice

Dear Andrea,
His appointment was only for lab work, and not to see the oncologist. He isn't scheduled back to see him for 4 more weeks. However, when he was checked 2 weeks ago, he had a slight wheezing and was told that it was most likely from the cancer that had spread to the lungs. He does not have any stent in place. The cc he has is not located in the bile duct, he has several tumors within the liver. Since he isn't eating well, maybe the lack of nutrients could be the culprit like you mentioned. I'm guessing he will end up back at the doctor before his scheduled appointment in 4 weeks. In the meantime, maybe I can get him to try the supplement drinks to see if that helps!

Re: prognosis advice

Update - My dad went to the doctor today. Turns out he has pneumonia in both lungs. Luckily he was able to go home and did not have to be hopsitalized. I hope he will be able to fight this off relatively quickly. However, I know with his condition it may take awhile. He is pretty determined to wait on the vacation until his birthday in April. I am hoping that all will go well and he will be able. Any similar experiences with pneumonia?

Re: prognosis advice

anp....hoping for your Dad to respond to the antibiotics quickly.  With his determination I see a trip coming up in April.  Also, we have several posting re: pneumonia.  Google function, top, right...enter pneumonia.  Some threads will not pertain to your specific situation, but there are others that do. I am staying optimistic and am crossing my fingers for a fast response.   
Good luck and all my best wishes are coming your way,
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