tlsinftl
Forum Replies Created
-
Posts
-
Kris,
I have been on vacation in Denmark with my Ben, I have been thinking of you being so close by. We drove to Malmo, Sweden and I gave you a big wave! You have been such a help to me and so many people…so here is a virtual hug as well. You are a great person, hang in there!
Tom
As always, thanks everyone for your support. Out passports are ready…documents are copied and we are off to Denmark for a week!! Looking forward to another week of good memories with close friends…planning on taking lots of pictures, Ben continues to feel great and normal. Chemo will start soon after we get home (I hope).
We have now met with two local oncologists here in the Fort Lauderdale area, neither which seemed to have too much experience with CC (although not many do I guess unless they are a major cancer center). Our plan was to have administration overseen by the Oncologist we met with at Mayo, but after a call yesterday he said he can’t oversee and wouldn’t prescribe a chemo regimen because he wasn’t “licensed” here so we really were on our own. I thought that was very odd coming from Mayo. We had also met with MD Andersen last week and i actually liked that Oncologist better…although it’s Bens decision…but at least she was willing to oversee and actually wrote a sample regimen to administer locally so we have another call into her to make sure she’s on board. It’s always a wild ride with CC and we are just at the beginning!
Anyway, at least looking forward to Denmark for a week with tears and laughs with old friends. Thanks everyone here my thoughts are with all of you…always.
Tom
Welcome to the club nobody wants to join Ironbark! I’ve been a member about six weeks – my partner was diagnosed with intrahapetic CC on August 30th. It’s definitely been a rollercoaster ride since then and I think I have experienced all of the emotions you described above. It is amazing how the “spontaneous crying” comes about…you might be thinking of one thing, then – wham it hits you.
I have found that this board is a great outlet and so many people are willing to provide so much incredible support. Sometimes I just come on here to vent my frustrations of the day – which helps just to write it down – and ultimately you get wishes and support from everyone.
In viewing a post the other day I read a quote that went something like this: “we just take care of the five minutes ahead of us, then we take the next”. Similar to my “living one day at a time” motto….unfortunately it seems that’s all we can do. I think sometimes it’s okay to just feel bad- for a little while…but then you have to pick yourself up – and just think about the next few minutes…because there will be plenty of good memories ahead and thinking about the things you can’t control doesn’t do any good.
Be sure to ask anything out here – because there are a lot of people with great advice.
tom
Welcome Aggiemom – sorry you had to find us but if you have been reading here you know what a great support family you have. As for a second opinion – I would definitely say don’t feel bad about seeking it out….and you definitely should. My partner was originally diagnosed by Mayo Clinic in Rochester. We also got a second opinion from MD Anderson (although more on chemo options then diagnosis), but nobody questions the need for a second opinion (even the top hospitals) as they all understand the seriousness of what we are facing.
To everyone – if you can make it to a major cancer center (listed in the new patients section of this site), I would recommend you try. Don’t be intimidated by it – both centers we have gone have extraordinary staff that can help you navigate all your questions. All you need to do is call their 800 numbers on their websites and they take you through the rest. Within 15 minutes of our first call to Mayo – they had us registered, validated insurance and had an appointment setup within 2 weeks (and that was even before we knew the tumor in Ben’s liver was malignant). They definitely make it as easy as possible for you so please don’t be intimidated and give it a shot.
All the best – and ask us anymore questions – someone will have an answer or guidance for a next step.
tom
Michael,
Deepest condolences on your father. I am fairly new to all of this but definitely understand the sadness you are feeling. Revel in the memories you have of your father…I am sure it’s hard to think of them now without pain, but they will carry much joy with you over the years. I am glad you had the opportunity to make those memories.
Tom
Judy, another center to consider is Memorial Sloan Kettering in New York City. Based on your location it’s much closer. Be sure to check out the section “major cancer centers” in the new patients section…it has all the contact information.
Best of luck,
TomHi Judy, I agree with Lainy…write a post in the introductions sections and you will get a lot more input. Meanwhile, I would highly recommend contacting Mayo Clinic in Rochester, Minnesota. Just call their general number and they will guide you exactly what you need to do. They say they deal more with this type of cancer then anyone. We are goingbto MD Anderson in Houston this week for a second opinion, but mostly to look at chemotherapy options that are closer to home. They are supposed to be the top cancer hospital, so you won’t go wrong with either, but I would call as soon as you can for your peace of mind.
Sorry you had to find us, but you will find great support, I have in a very short amount of time.
Tom
Thanks everyone for all the support, i will let you know how it goes at MD and I’m sure i will have more questions!
Leaving for Houston today to head to MD Anderson for a meeting with an oncologist Wednesday morning. Ben and I have spent the last few days touring Texas and Oklahoma visiting his family.
He says he found a lump on his chest, the oncologist that we did a consultation with locally in Fort Lauderdale said it should be checked – so at least we will be at MD to see what’s happening.
I will say it’s hard to believe he has anything wrong. Sometimes he has more energy then me – and he looks great, but we know evil is lurking….I only hope that he continues to feel well for some time. Chemo is likely coming in the next few weeks so we are trying to travel a bit more while he is feeling well.
We had a similar situation as Betsy’s. The tumor marker was normal. Our doctor at Mayo said it only shows in less then 20 percent of cases.
I am definitely not an expert yet, but I do know our oncologist at the Mayo Clinic said they don’t like to do chemotherapy if bilirubin is above 5. He said they could but they usually weaken the dose. But if it’s above 10 they don’t recommend it. I think because at those levels the body is already too weak. The stent should hopefully help drainage, my partners bilirubin went from 21 before his metal stent to 4.4 two weeks later. All the best to you and your mom!
I’m new to this board and we haven’t started chemo yet – but that all sounds like great news…we have meetings setup with oncologists tomorrow and next week – so I’ve written down what you have done and I’ll be discussing with my doctors.
Congrats on the good news – it’s always nice to hear.
Kris, I am so sorry about the strike – I am going to boycott french fries for you!! I am hoping to get my Ben out tonite and one of the local restuarants has Karaoke – so I’m going to get someone to sing a Jimmy Buffet song for you….so you will have friends in Lauderdale-by-the-Sea, Florida thinking of you.
tom
