brenda-on-the-farm
Forum Replies Created
-
Posts
-
Your post sure gives us all alot of HOPE ! We all need that.
Like you said, you didn’t like the first diagnosis and was not ready to give up and just look at you now !
My husband case is real similar only we are waiting for treatment or a transplant
after really no treatment only Y-90 back in july 2012. So happy for you!!!
Brendaok, so, I’ve got more lab results
T. BILIRUBIN 2.6
Albumin 2.8
AST {SGOT} 60
ALT {SGPT} 40
Alkaline phosphatase 132
CONJUGATED BILIRUBEN 0.0
T.PROTEIN 6.6CREATININE 1.5
BUN 13Thank you for the replys
Cathy, Thank you for your kind offer. We ar taking the train this trip because I am alittle leery of the weather this time of year, hey, it might be fun to ride a train. We are only 2 and half hrs away but I think the train is the way we are going,
You are a inspiration for me, your story gives much hope. Of course you are alot younger than my husband, but he has always been so strong and healthy as a horse, I just want him to have a chance. And Dr Chapman is really good at transplants from every thing I’ve read. We will be seeing either DR Kerr or DR Crispin at this appt also either a Mri or Ct. Our cordinater, Valeri Kopecky has stayed up on everything on that end and calls us often. For that I am thankful.
A nice man that also had transplant at BJH has been in touch with Us thru e-mail and phone offering to help anyway possible also. Kenny is rather quiet but has decided he would like to call him. Things are not getting better as I am sure you know first hand. We know that BJH are doing all they can in making a good case for Kenny to Medicare to approve the transplant. He has a meld score of 20. Not really sure where that would put him. Thanks so much for all you do to all of you, it means so much to so many I am sure.
BrendaTHANK YOU ! Can I ask you to look at his latest labs?
WBC 4.4 low
RBC3.51
HGB 11.8
HCT34.3
MCHC 34.3
PLT 65
eosinophils 8
basophils 3
neutrophil count2.5
lymphocyte ct 0.9I know not much what this all means. You have a way of putting things so that a non medical person can understand. Thanks again and god Bless you too.
BrendaI forgot to say how much I look forward to reading all the posts, so much good information andlots of support. I have rambled too much here but it does feel good to be reading other peoples post and know how they are feeling, I feel so very much alone, even with family. They all help when they can.
Daisey ! Was wondering how your mom was doing. My husband is the one with this awful cancer and we have also been to see Dr Chapman.Infact we just got home last night after having some final appt at Barnes to complete for the Dr to decide if maybe my dear husband might qualify for a liver transplant, either way Dr Chapman will let us know thru Valerie our contact person what they decide would be best for him. I have a good feeling about it. I hope and pray that he can get some help, this is the hardest thing I have ever been through. I feel helpless, there does not seem to be too many options. But I will keep going no matter what. I wish more was known about this cancer. I am so glad that I found this site it sure opened my eyes and has given me so much hope.
I hope your mom continues with a full recovery!Daisy, I am sorry to hear that your mom is having pain, hopefully soon things will get better. I think that would be a big surgery. It must be hard for you being so far away. Every thing about this darn cancer is so strange and new to me. Did Dr Chapman do your mom’s surgery? I have met him and he is a very kind and caring man. We just got back home today from Barnes, My husband was assesed for a transplant, no we don’t yet and as things happened we have to return for 3 more appt later this month. There was agroup of 4 others that need a liver too. We had classes and tests, Blood work galore, cat scans …two solid days. But very informative. I am glad he is at least getting a chance.
Me, being the country hick that I am, did all the driving, yes, I got lost but stopped for directions and managed to get there and get us back home!!.Cathy sent me a email but my old computer was not cooperating for me then. I am getting a better signal now since getting home from Barnes. I want to thank you Cathy for your kind email and offer of your help.
May your Mom feel better each day.
BrendaHas anyone heard of a possible link to drinking water? I have wondered about that for a long time, and no, I have not heard of a blood test for cc either.
pfox, you must keep believing!! Don’t give up, like us , try some where else and who knows when they could find a cure. We got the same explanation, no benefit….I feel like we don’t have the time to waste and I am not giving up on my husband yet. Prayers go to you,
BrendaYes Daisy, we have been to Barnes twice in the last month. The second appt was with intervential Radiolgy , that was to dicuss my husband having a chemoliation, my spelling is bad, after we got home, the team at Barnes called with question as to us coming down for a 3 day asessment for a transplant, NO PROMISE’ But at least we have hope and we sure need that at this point. Dr Chapman told us that first appt that the sitiation was a tough one but did not say NO. It’s worth a try as my husband is getting weaker. What a horrible disease !!!!
Lainey I know my posts are sort of scatter brained but I am both happy and sad and very tired these days so thanks for the wishes and hopeWe have gotten the call that my HUsband has been accepted by Dr Chapman to at least have the Transplant asessment, no promises, But we will take it!!!I feel better just knowing that we are doing all we can for him . Now to get the dates, hopefully soon.
Daisey, I am sorry for high jacking your post, I am new and honestly was not sure where to post, I am working on it…
I wish your sister all the luck in the world , maybe we both will benifit from out St Louis appt.
BrendaThanks Lainy! I am so new to this but I have been a lurker since last winter.I feel like I have let my husband down by not getting another opinion way before now.We started with the best ,Mayo so I just thought that some how some way that he would be ok. Mayo is wonderful but they never said or maybe I missed it, that there is no chance. I thought the treatment took care of it and follow up MRI and Cat Scans. It has been 14 months since diagnosis, Our local GI dr asked Mayo what plans was in store for him and they said NONE . You can bet that we will take the appt with Barnes, we might not even stop there if we have to we will go for a third appt. But I should be hearing back today, I can pack pretty fast, and we will go when they say My husband has been pretty weak and I am so worried that his liver is getting worse. He has no stints but then no one said he needs one. Ascites and leg swelling, vomiting was awful until recently] promethazine[ has finally stopped that BUT the side effects are bad, Zofran did not touch it. Now he has lost weight and the ascites has quit for the last 6 weeks. He was having 6 liters drawn off every 10 or 12 days for a couple of months. Thanks for being here, so much imformation.
BrendaHello Daisey, my husband has cc and had a liver tumour also cirrosis. Theraspere July 2012 , liver functions were worse afterwards. And then …..nothing, just follow up mris and cat scan. When asked finally what was next, the answer was ” no treatment plan” I was blown away and heartbrken to say the least.
After more than a few tears, I recalled reading about Dr Chapman here and placed the calls needed for a apt. which we got in to see him and his team in one week. He explained that the situation was not good for my husband , but he didn’t say : No: either. We came back home and waited for further word, yay, nay or what, Barnes called and they want my husband down for 2 full days of tests and talking. YEAH That gives us hope. And that means alot to us.Brenda
