Topic: update not a good day

well,today george was to have round 2 of chemo,but blood work would not allow it,numbers to low,so,we will do it next wednesday.He did have to stay 3 hrs for fluids,his blood pressure was pretty low  80/70,caused by dehydration.also they are lowering his dose of gezmar to 850,1000 was to much according to dr,his body is to slow at rebuilding platelets.i think i said all that right.he wont be doing day 1 and day 8,now its day 1 and day 15...well,alittle hungry now,type to everyone later love and hugs Lynn

Re: update not a good day

Hi Lynn & George. I am sorry about the Chemo cancellation, again. Tell George to rest up and I believe Chemo keeps on cookin for a bit. Sending you both my best!

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: update not a good day

Hi Lynn,

My daughter had to have her chemo delayed a few times because of low platelets. The first time we thought it was the end of the world, but later came to realize that it happens to many people and you just have to take it in stride, rest, and they usually come back up. Lauren swears that Gatorade makes her platelets go up, but her doctor always just laughs at her. I think it is purely coincidence, but we won't tell her that. I hope George is able to have chemo next time. Take care.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: update not a good day

My dad is having the same problem right now also Lynn. His platelet counts seem to go too low for chemo to be done every week. we just try and go with the flow praying that what he receives will be enough to do the job. I know a lot of chemo patients that this happens to. Hang in there. Dad is going on 2 years and holding strong! God Bless.

Re: update not a good day

Hi Lynn,

Sorry to hear that George's chemo was cancelled, grrrrr....... Fingers crossed that he will be able to have it next Wednesday. How is George doing today?

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: update not a good day

Hi Lynn
I'm not sure how often does his doctor checks cancer marker for George, but I would recommend checking it before next chemo. When my husband was in similar situation and we had to postpone the chemo - I just wish they checked cancer marker at that point anyway. They gave him last chemo (we didn't know it was going to be last one, of course) and checked cancer marker on the same day, only to find out that chemo wasn't working already. So it only speeded up the passing and gave him more side effects to deal with. Just a word of advice... I'm sorry to be a "downer", but after watching my husband suffer, it changes the perspective (quality over quantity).  I do hope it's not the case with George!!!
Sincerely, Alla

Re: update not a good day

Alla, you are not a downer as I know you are talking from experience and that is why we are all on this Board. We have to take the good with the bad, how else could we appreciate the good? Teddy was 78 when they offered Palliative chemo and he asked the ONC if it would buy him any time and when the ONC said about a month he opted not to do it. He chose quality over quantity if you can call a month quantity. To chemo or not is such a personal decision and I think one of the biggest decisions our loved ones have to make.   There are no right or wrongs, we do the best we can and you did very well. Still thinking about 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: update not a good day

Hi,
I agree with Lainy 100%.
Even if you do CA19-9 monthly,even you saw the trend was up and down ; or you platelet count was below 100,000. Chemotherapy or not is depended solely on the experience of the oncologist. The lab work only provided him/her info to make the best judgement call of start chemotherapy or not. And that is why experiences count a lot in treating CCA.
You should not regret anything at all.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: update not a good day

thanks everybody,alla,come to think of it,i did ask his Dr about the ca-19-9,and this is what confuses me,she looked and said that nothing showed it was the same,and that sometimes it wont show.
Ok,i have a question if anyone can answer,how can i put this,heres an example..george got up and asked if i put the dog out this morning,he said he dont know if he got up and saw jake by the door,or he dream it,dose that make sense? thank everybody love and hugs Lynn

Re: update not a good day

Hi Lynn, this is a tough one as maybe he did put the dog out but can't remember it due to the MEDS. OR it could have been a dream. How is George otherwise? Does he still seem sharp when he is awake? Well as sharp as he can be right now. I am glad you checked in today as I have been wondering how you both are.

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: update not a good day

hi Lainy,sorry i havent been on,i think i had a touch of a stomache virus,or something,just havent been feeling good,i think all this is catching up with me.george is soso,i have noticed that he has to think alot when talking,he will stop and forget what he was talking about,im trying everything under the sun to get his blood pressure back up,slowely going up tho,i went into the living room where he is and he was just staring at the tv thats normal,but he was holding the remote in the air not doing nothing...type to ya later love and hugs Lynn

Re: update not a good day

Lynn, hope you feel better quickly, you must take care of yourself! I think you should mention this to Hospice and or the Doc, it could be a few different things. Thinking of you all the time!

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.

13 (edited by tryingtohelp Sun, 18 Nov 2012 14:53:44)

Re: update not a good day

Hi Lynn
I guess his doctor meant that for George his CA19.9 is not a good reference, if his numbers are in the normal range, yet he still has cc. There are patients for whom this test doesn't work. If that's the case, CT scan or MRI would be the only way to tell if chemo is working or not. Again - that's my understanding.
About the confusion - need to keep an eye on it too and definitely inform your hospice. My husband had confusion issue the whole last week of his life. Sorry, not trying to scare you... But in his case - he almost didn't have "normal" moments, once it started. For example - he'd tell me that we need to get up early to paint the rooms, or that he needs to feed the horses (that we don't have, but he had over 17 years ago), or he would ask me who was standing next to his bed (nobody was). Yet, if you ask him some questions - he'll answer most just fine, except if I ask him where he was. And he always knew us - never got confused about it.
But there could be few other reasons for confusion - high temperature, urinary tract infection or ammonia levels. Ask hospice to check it all. Also - did they change any pain meds recently or increased the dosage?
Hope this helps and feel better soon! SIncerely, Alla

Re: update not a good day

thank you lainy,im feeling much better.Alla,,thank you for your helpful replys,what you said makes sense about the ca-19-9,his dr did say they were doing a scan in 2 weeks,after his 2nd round of chemo.As far as the confusion,it dos,nt happen often,but it is bothersome for me.george has been having problems with his blood pressure (low),i did call the 24 hr,nurse about that,we talked for about 10 minutes on what to do.miss kay(his nurse)will be out tomorrow.we just had a visit from him mom and cousin he hasnt seen in 10 years,george talked about when they were kids and didnt have to think about nothing when talking about his past,he remembered it so well...,there hasnt been any change in his meds,but he dont take them like he should,even tho miss kay said that wasnt good,she'll get him for that...Love  and hugs Lynn

Re: update not a good day

Hi Lynn,  My husband suffered from confusion due to hepatic encephalitis (due to the liver failing causing high levels of ammonia). Lactulose helped him until near the end. Let his doctor know about the episodes of confusion. They can check George's ammonia levels by a blood test to see if lactulose could help him. It is tough to see them confused, breaks your heart. Sending positive thoughts that George will be able to get his chemo this week. Hugs. Nancy

Loving my husband from afar.