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What a nice post…reminding all of us to make as many memories as possible. Since Ben was diagnosed I have been trying to commit to leave work by 5:00 everyday…because even the simple stuff right at home makes us feel good and creates it’s own memories. Thanks Frances!
jladams,
I’m fairly new to this site (two months), as my partner Ben was in a similar situation. An MRI discovered a tumor in his liver – upon discovering that we immediately made an appointment for Mayo Clinic (where they diagnosed the CC). I would highly recommend a second opinion and the Mayo Clinic was amazing and from what I understand treat the highest number of CC patients (their knowledge was amazing). You may not hear what you want to hear, but they are really good…I’ve also heard that Sloan Kettering (always known as a top cancer center) also has experience in CC. Definitely worth checking out.
So sorry you had to join us – but you will find an amazing amount of support here (and very quick responses).
tom
Hello Jaynus – we are all glad you joined us, you will find a lot of support here at this website. I agree with Lainy – if you could provide us your location maybe someone can recommend someplace to get a second opinion (at least for moving things along a bit quicker).
I’m still fairly new on this site as my partner was just diagnosed on August 30th. However, it’s been 2 months since his diagnosis – and he just started chemo…there are no guarantees if it helps or not since this cancer varies so much, but the protocal he is on has provided the most advancement based on recent studies.
I am curious as to why some people get external bile bags vs. a stent in the liver? I guess in your mother’s case since they thought they might do surgery they didn’t want to put in a stent. In Ben’s case – instead of opening him up for surgery, the did a less invasive laproscopy and discovered it was stage 4. Knowing that, they put in a metal stent in his liver (exactly two months ago – Aug. 30th) and it immediately helped drain the bile….he went from a bilirubin of 21 before surgery to his present state of .7 – and he feels great.
Anyway, I don’t know if the bile bag vs. a stent makes a difference, my guess is it’s also due to the placement of the tumor – but all of the above reinforces the idea that a second opinion at a good cancer center is essential. Write for questions if you need any help!
tom
Update on Ben’s hiccups – he still hasn’t had a recurrence since the “spoonful of sugar” (la la la la la la)…..anyway…
Thanks everyone for your comments…Margaret….it will be interesting to monitor hair loss (Ben has a full head of hair…and of course it figures, I’m the one who is bald)…..
Marion – thanks for the tip on the Gemzar, I’ll discuss with the doctor – and I will also post the tip in the side effects section.
I continue to be in awe of the simplicity of using this website and the benefits it brings – and the extraordinary people here.
tom
p.s. as for the halloween party – after Ben’s nap he decided he was too tired to go (I suspect that was an excuse)…so I printed out a large size photo of him and strapped it to the back of my head! So there!
I am sure words can’t express the pain you must be feeling, just know that all of us are here for you! Find your favorite photos of Tad and your fondest memories will overcome the images from the past week…my thoughts are with you.
tom
Margaret,
I don’t have any suggestions yet, as Ben just started his chemo yesterday but it will be interesting to see the responses from others. We have talked about him using “illegal substances” when the time is right (I just need to figure out where to get them). I did a search of marijuana on the board and it looks like it has helped some people….there are 12 states (I think) that have legalized marijuana for medical use….but if it gets to the point…I will be doing whatever I can to make things easier….
tom
I can’t imagine everything you have been through for so many years…your strength and courage is an example for all of us. If I have half your strength I know it will be ok.
I will say – I never thought I would be on an internet discussion board where we talk about gas, burping, bloating, urine color, type of stool, tubes, bags, etc….I guess we ARE all family – because that’s the only people you would discuss that stuff with!
It’s been a while since I have posted – but I certainly have been keeping up with everyone on the board and keeping everyone in my hopes and thoughts…it is interesting I find times when I just don’t feel like writing and other times I do.
It’s finally all coming together…after returning from Denmark we had two more consultations last week with local oncologists trying to find the right “fit” Luckily we liked both doctors, so it was nice to have two to choose from – so we went with the oncologist that was only five minutes from home and had the best “chemo” room (and also was highly recommended), so all of that is a relief.
Ben finally decided to have a port put in as well, so all that is happening on Thursday – and chemo will finally start on Friday. That’s a full two months from his diagnosis (on August 30th)….as I’ve said before – I’ve been so anxious because it seems like we have waited so long to start – Ben still has been feeling very good, but this week he has noticed an increase in burping and sometimes painful gas…but it appears that seems to be common according to the board here (I assume from the cancer growing??).
The chemo regimen will be the standard Gemzar/Cisplatin as outlined in the most recent study – MD Andersen had recommended a bi-weekly protocol, while Mayo Clinic (and both oncologists we met with here) thought we should be more agressive and use the protocol from the study…Two weeks on, one week on, start again- so that is what we are going with.
I realize everyone experiences side effects so differently from reading everyone’s posts – and of course I am hoping that Ben’s are minimal but we will just have to wait and see. I think I’ll create a new post in the Chemo discussion board to track the specifics of dosage, side effects, etc…not only for me and my documentation but for others for comparison. (I’ll recap our whole journey there as well)….
Thanks everyone again for listening and all the support…you are all incredible.
tom
Kris,
I wish I had advice for you, but we are just starting our journey here and have already learned so much from you. I am sure in a moment of clarity you will know what’s best for you. You have helped so many with your experience, attitude and perseverance…and I know that countless people around the world are sending every positive thought they can muster your way.
Tom
What a nice post Lainy….some good advice from someone who has seen and been through so much. You are such a wonderful person and have helped so many through this board….I hope I have half your stength.
Tom
Well, we returned from Denmark yesterday afternoon – and I will say we had an incredible trip. Thanks to the support of all of you, it made for a more “worry free” vacation. Everything went remarkably well – even the weather in Denmark – which is usually cold and rainy this time of year was surprisingly cooperative with most days being sunny and in the 50’s – yea! We had so much fun and good times with our extended family there, and created so many good memories….and since I like to take photos, I now have about 500 new photos to add to my collection (which I will cherish forever).
Luckily – Ben continued to feel great the entire trip, it’s still the unfortunate irony in this whole thing, that right now he looks and feels normal. You would never know there is anything wrong – so it definitely helped us for the week, not having to constantly THINK about what’s coming.
So, now we are back at home…and of course it didn’t take long for the reality of the situation to be back…since he feels so well, it’s hard to think that there is anything wrong – but it soon changes when you have to start the preparation for the upcoming appointments.
We did meet with a couple of oncologists locally before we left for vacation, and had hoped to start chemo the week we returend (we even had an appointment setup to start it on Monday), but Ben said he still didn’t feel comfortable with the two doctors we met with so we followed up on a couple more recommendations and have two more “consultations” this week. Ben promised this would be it for the consultations as he realizes he needs to get started, but of course finding the right Oncologist is extremely important too…..
So, while chemo has been delayed another week while we do our final interviews, which does concern me – at least he is still feeling great and we are taking advantage of that (and this weekend I am hoping to finally get my long awaited Jet Ski lessons).
Back to catching up on how everyone else is doing here….I’ll keep you all posted on our chemo process (which helps me document as well).
Tom
Thanks everyone for the information. I will definitely be sharing it with Ben. We have two more “interviews” this week for Oncologists to determine who will “win” as the administrator so I guess we will see. Although, I would definitely like him to start the chemo as soon as possible, so maybe we start without the port and have it installed later…but that decision will be Ben’s.
Tom
