My Introduction

[Karen]

We're nice now, but once you're cured we'll start picking on you!!!

Seriously, the time will come when this is behind you and perhaps you can help others through this journey. Giving back is a big part of what this freakin' disease teaches many of us.

A resource I relied on heavily at first was http://tcrc.acor.org . Bring a pencil and note pad, take notes, ask questions, and become your own expert.

[Jay68442]

Well that's a rather s^!ty present. I spent my 16th and 18th birthdays in the hospital having chemo and a bone marrow transplant. As the others have said make the calls and go aggressive. Best of Luck.

[Karen]

Wow, you guys! Scott's idea of watching paint dry to celebrate is sounding better and better to me!!!

[rallendorf]

You people are a riot. Thank you again for the good support and interaction. Just to update, I received a reply from Dr. Einhorn. He also confirmed that BEPx2 is clearly wrong, but also felt that there shouldn't need to be a rush to start. The belief was that it would be reasonable to repeat studies in 4-6 weeks to monitor any obvious progression would still have the same expected 100% cure rate as if I started today.

So today I will put the brakes on the 2-cycle treatment and then call Dana Farber again and also contact the Cancer Center at Jordan Hospital in Plymouth to inquire about their chemo program. Ultimately, Jordan would be the most convenient option based on my location. Anyone know anything about them? I know they are affiliated with Mass General but that's about it.

Peace!
Sfumato

[dadmo]

Sfumato:
I'm a bit late to this thread sorry about that and welcome from me. It seems your on the right path to get cured so congratulations on knowing what needs to be done. I have one comment about Einhorn's statement, it may not need to "rush to start" but the sooner you hit this the better. With confirmed spread you should certainly act as quickly as possible.

[Mom]

You have no choice but to "make it work." You might have the same outcome, i.e., a cure, but I would prefer my son fighting the disease at stage II rather than stage III. He was offered the 2xBEP when they thought it was adjuvant therapy because he had vascular invasion, but once the MRI showed a small lymph node possibly in play and his markers not going down he went to 3 x BEP. I think once the chemo protocol is in place you should be able to have it done anywhere. My son started his chemo the day after he turned 30. Maybe this disease has something to do with birthdays! Hang in there, stay positive, you will soon be on your way to that cure! Dianne

[rallendorf]

All your replies have been great and motivating.

I wanted to close out by saying I spent today hectically getting all my work affairs in order, and also seeing unexpected things unfold regarding my treatment.

The short story is that I got hold of the Dr. at Dana Farber and I'll be starting treatment there first thing Monday. I spent much of the day securing ride commitments and having my coworkers volunteer for a ride-share. By the end of the day I had ten volunteers wiling to be scheduled. It's incredible but Im scared as hell to put people in that position. It can be a long ride from Boston to my town.

So, I need to get a better idea of the end time to better schedule my afternoon rides out of Boston. Does anyone think I will be there all day, from 8 to 5? Or could I expect to leave earlier in the day?

My other question is basically what do I need to have with me? I know I should have busy stuff like books, laptop, iPod, etc. But is there anything you think would be useful that I might not be thinking of?

Many thanks,
Sfumato

[dadmo]

As the group thinks of things we will all list them.
The treatments should take about 5 hours a day Monday through Friday then you will have 2 weeks off. You will do this for 3 cycles. One day during your off week you will need to get your Bleo shot and possibly a shot of neulasta.
If you can call DanaFarber and see if they can't have your prescriptions either filled or sent to a drug store near your home. You're going to want your anti-nausea meds right away.
Bring plenty to drink and drink drink drink. You want to flush the chemo out of your kidneys as quickly as possible.
Busy work is good but you may have trouble concentrating.

[TCLEFT]

sfumato.
Sorry I didn't get to your thread until now. Welcome to the Family. Sorry you had to join us but welcome anyway. Chemo times can vary depending on fluids you may need, amount of others in the Chemo Cafe (a term you'll end up using too), whether you're an easy stick (sounds worse than it is). I was in at ~ 7:30 and would average ~3:00 finish time. Some days a couple of hours sooner. My favorite hobby was sleep. Occasionally I'd bring in a DVD or a book, but sleep was definately a friend of mine. Talking to the Nureses and Patients was good too. It's not a fun time, but it doesn't have to be horrible either. Bottom line, overestimate time for your rides until you find a rhythm. Then you can narrow it down. Or better yet ask the Nurses what they think. Let the people who want to help do just that. Be selfish for a little while. You're going to need support to get better. Those that care for you want that too. It's just a bump in your life's rode. A fairly sizeable bump but not insurmountable. Call on help when you need it. I think all of us have. I know I did. We're here when you need. Hang tough Brother.
Mark

[Karen]

I spent much of the day securing ride commitments and having my coworkers volunteer for a ride-share. By the end of the day I had ten volunteers wiling to be scheduled. It's incredible but Im scared as hell to put people in that position. It can be a long ride from Boston to my town.

My bet is these folks are happy to do this for you. Don't feel guilty, feel blessed!!!! The drinking part is very important. You need to flush that stuff out of your kidneys very well. Petep posted a great list of chemo tips in one handy dandy post that I can't find right now....

[Fed]

Hey Bro,
I just dropped you a PM, but the suggestions TCLEFT and dadmo are giving you sound like par. And yes, I will bring you lunch as promised . Although I have lab meetings in the middle of the day, I can meet you when you arrive and take you wherever you need to go. Other than lab meetings, I don't have that many time commitments, so I can help you out as much as is necessary. Give me a call over the weekend. You have my cell number.

[Karen]

I found Petep's chemo tips!!!!! Hope they help.

http://www.tc-cancer.com/forum/showthread.php?t=3699&highlight=chemo

[rallendorf]

I'm seven years out, still all clear, and rereading this thread through pooling eyes. The goal of 'getting my life back to normal' sometimes comes with the unfortunate by-product of forgetting just how serendipitous it was to have intersected with so many big hearts. This simple thread could not have reshaped my life more profoundly. So I'm dipping back in to say thank you all once again!

Peace!
~Ric