Scan Results and Next Plan of Action

Thanks, my cyber-friends!!
First... I want to thank you friends who jump in with support and encouragement. Even though we sometimes are given these challenges that appear to be quite daunting... it's amazing how just a comment/note from friends who totally get and understand what we are going through, can change one's "poor me" attitude. I think it's ok to have a "poor me" moment, whether it lasts a whole evening or into the next day... that's ok because, damn it, no one has done anything to deserve this disease. Just like no one has done anything to deserve a brain aneurysm, or a stroke, or a fatal accident. Sure, we can blame contracting the disease on lifestyle, or attitude, or lack of certain beliefs (no one really knows why so many get this, although there are lots of opinions)... but the bottom dollar, no one DESERVES this nasty monster who has moved into our lives.

So, it's time for me to regroup my thoughts, readjust my outlook so this new scenerio fits into my comfy world of denial and then readjust my daily schedule of always being on the go to fitting in chemo appts. and a day or two to laze about "recouperating" if needed.

Tina... thanks for the heads up on how George is handling it. At this point, I won't be having the Irinotecan (which yes, is the same as the CPT-11) mixed with any other chemo... I'll just be getting the Irinotecan by itself and I'll be on the once every 3 weeks for a 90-minute infusion. I did find this fairly comprehensive information about Irinotecan (Campto, CPT-11) that might be of interest to others who may be starting this chemo at some point::

Irinotecan

Click on the link above and then on the link listed for Irinotecan when you get to the page.

So, time for me to regroup and I already have started. I have an 8 week break of no chemo starting now. It's possible Dr. So (kidney surgeon) may recommend that we get rid of the kidney tumour during this 8 weeks, hence there will be an RFA procedure to blast the little sucker. But there will be no chemo for at least 8 weeks. Although I'm busy with all my theatre projects, I am purposely going to make some time for ME. Nothing planned other than to just enjoy some down time... maybe scheduling some days just to laze about reading, or doing some "Me" projects on the computer like updating my blog, or just going out with the dog and my camera. I'll still have all my theatre work but rather than work on that 24/7, I'll actually call a time out and some days I just won't be available This next 8 weeks will be to do the things I always enjoy doing (my theatre work) but also to focus on ME to get rested, relaxed and psyched up for the next 6 months of this journey. Hmmm... I may even look at doing some rearranging of stuff in my apartment, on the off chance that while I'm on this new (to me) chemo, if I end up having to spend X days of each 3 week cycle at home, then it will be all set up for so that it's all about me and my convenience I've already started with the bedroom, making that my "entertainment" room. I bought a new 32" HDTV, a PVR (I think the equivalent is a TIVO machine (?) in the States), a Blu-Ray Disc player. Last spring, I bought a new adjustable queen size bed with one of those new latex/memory foam mattresses... so comfortable and quite decadent to have a wireless remote where you can lift the top of the bed so you are in a comfortable position for watching TV, or raise the foot of the bed, should you need your feet/legs elevated. Total luxury... not a necessity at all but what a difference in comfort! I guess now, I need to go on a shopping spree and pick up a bunch of Blu-Ray movies/TV series that I haven't seen before

All is good... and it will get better as my mind grapples with the reality, chops it up into easy pieces that I can put on different shelves in my mind and then just tackle what I need to tackle at the time I have to tackle something. I'm very good at compartmentalizing so I only have to deal with small chunks of life at a time. But when someone throws me a big whopping thing like all the complexities of "Your chemo is not working. We will stop it. We will start you on a new chemo that will have different side affects than what you've had so far. We will surgically insert a port again. If the surgeon recommends to get rid of a tumour in your kidney, then we will have that done as well. More scans. More blood work. More...more... more! It can be overwhelming and I zone out and/or get upset because I can't work with all these different things in one appointment/conversation. But once I can compartmentalize the information, then I can deal with it much easier when I just have to deal with one chunk at a time

Soooo... another babbling post by yours truly. Sometimes (for those who are new here and wondering who the heck is this CherylHutch person?) I find that if I just type what thoughts are running through my head at the time I'm at the computer, disjointed as they might read, it is actually very therapeutic. So you all are my therapists... sitting there, nodding your heads up and down with the occasional "Hmmmm..." "Yes, but how do you REALLY feel?"

Cheryl

unknown said:

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Hey Kathy!
This is so great.. you are the first person on this board that I have ever known to be able to say you have met my onc. Sharlene is absolutely fantastic!! There are not enough fantastic words to say about her. Not only is she extremely smart and intelligent, she is magic when it comes to compassion. She can be compassionate without being sucky sweet. That's not exactly the words but I think you know what I mean. I agree, anyone who has her as an oncologist is in good hands!

If you don't mind, I may PM you on occasion (or maybe we can exchange email addresses in PM). You have a headstart on knowing the side affects of this chemo, so I may have questions as we go I won't be starting it until February... Sharlene wants me to have a good break so that there is no trace of the Xeloda in my system when I start the Irinotecan. I know in the past when we talked about if/when I might need to go back on chemo, she would not put me back on the FOLFOX since I got such bad nerve damage in my legs/feet that didn't go away when I was finished the 12 rounds. So she mentioned Irinotecan/Avastin as one combo.... and that is probably still an option down the road. Yes, I have high blood pressure, but it's totally under control with meds.

I have started a little list of the pros/cons that I can be expecting and one of the pros that I've come up with is... I go in every 3 weeks for a 90 minute infusion. That is a shorter time than when I did the FOLFOX for 3 1/2 hours... and then had to go home with the pump for 46 hours. I won't be needing to go home with a pump!!! YAYAYA!! Just get it done at the Cancer Agency and then go home, with no attachments

It almost sounds like the symptoms are very similar to the 5FU.

I will talk to you in PM about your Vit C IVs... and which integrated health clinic you get them at. Thanks for all the information!!

Hugggggs,

Cheryl

AnneCan said:

Hello my Fellow Canuck!
I sorry you didn't get the news you wanted to hear. It sounds like you have a great onc. And your attitude is so fantastic. I am on folfiri + avastin (26 rounds so far). For me, the greatest side effects from the irinotecan are hair loss (extensive), diarrhea, fatigue and some nausea. I do also get the stomach cramps during infusion + they have been getting worse, so now they give me atropine (sp?) first. Enjoy your chemo break, + best of luck with next steps.

Canuck to Canuck
Hey Anne!

Wow... it just goes to show it really is true that no two people react the same to treatments, hence even though we can call our cancers by the same names, they are as unique as we are. I have a hard time getting my head around that concept. I mean, I read it, I understand it, but then when it comes to starting a new treatment or having a new development in the pattern of my cancer, I immediately come here and ask if anyone else has had this treatment or this development and want to know how it was for them. Your experience with the Irinotecan is so totally different than Kathy's (up above). When you were in the Irinotecan was that with in the Folfiri + Avastin mix? Or did you have Irinotecan all by itself?

I know I have a good break over Christmas/New Years and then the month of January... so I'm taking that time to prepare myself for the worst of side affects and the best of side affects, so that I'm prepared for either and everything in between. The worst thing for me would be nausea/vomiting and/or severe diarrhea. Anything else, I can pretty much handle. Oh, and when I was on the Oxypilatin , that was horrible for me. That's when the nerves in my lower legs/feet got damaged and I was super super sensitive to the cold. To the point if I was in a room and the temp was lower than 72F, my throat would freeze up just from breathing the air. I have never experienced anything like it and hope to never again. Even my onc said that she would NEVER put me on the Oxy again

Ok... I'm taking notes Thanks for your input!!

Huggggggs,

Cheryl