How long to wait before starting chemo?

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

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

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