The Colon Club

Just had my 10th treatment yesterday on this regimen and ONC is currently planning on chemo holiday. I have a CT scan on Thursday (ins. wouldn't approve PET) and I have a lot more anxiety this time. April's PET showed tumors shrinking, but then I got a pretty severe cold during mid May that lasted well into June. One of May's treatment delayed 2 weeks due to high temps and the one right after delayed a week due to cold. These have been my only delays since starting chemo last July. My CEA bottomed out in May at 5.5 and has crept back up to 6.9 since. Hoping the CEA rise is due to that, but ONC is concerned chemo may have stopped working. We have already been talking about possible referrals and trials due to how aggressive the cancer has acted in the past. I normally get a call from the office when they get the results as a heads up. Call from the nurse is a good thing, call from the ONC is not. I have an office visit scheduled the week after the CT.

It's been a horrible week with my father-in-law passing. He led a very good life to the ripe age of 93 and will be terribly missed. As I sit here, the tears can barely form due to dryness in my eyes from the chemo. Some days I really do hate the chemo side affects.

After yesterday's treatment I visited my original chemo buddy upstairs in the hospital (we sat next to each other during my first 6 month regimen and had a lot of long conversions). She's been battling for several years now and is so very tired. I fear what may be coming next.

I normally don't spill my guts out, but after this week and when I think about the scan coming up I sure could use a boost of positivity.

Hi orlar,
Some weeks are for sure worse than others!
And scanxiety is making things even worse - I do understand that ! even though I’m not the one in my family having the scans... I also get the scanxiety.
I wish I could do more but I am sending a Lot of positive vibrations for your upcoming scan!
Kind regards /LPL
P.S. I see that you have the same Kras mutation as my husband. I have not seen many of those..

(((oriar)))

As LPL wrote, some weeks are worst than others. And I too am sending positive thoughts and prayers for you. Scanxiety are very stressful in themselves, butt add your FIL death, I am so sorry!

Please feel free to vent here all you want or need to, we do get it.

Good luck with your upcoming scan and keep us posted,

Lee

I'm so very sorry for the loss of your father in law and hope you get good news!*hugs*

I’m so sorry to hear about your loss and the hard week. I know a looming scan can heighten all of those feelings.

Sending positive thoughts and prayers your way! Let us know how it goes.

Hi Guys, thanks for the good vibes. I did get a call from the ONC last week so I knew the scan wasn't so good. I met with my ONC yesterday to go over the results. CEA up to 7.8, no new lung nodules but existing ones enlarged. Main liver lesion essentially stable in right lobe, but 2 new ones in each of the left and right lobes. Mild right side hydronephrosis and hydroureter (yeah, I had to google it) due to secondary interval growth in retroperi. Oh by the way, an aneurysmal dilatation which has never been mentioned before. The Irinotecan and Avastin unfortunately stopped working at some point.

ONC didn't think Lonsurf or Stivarga was the best option for me and suggested clinical trials next. I had been doing some research and ONC is checking on a few I had mentioned. Also, ONC is referring me to my 2nd opinion ONC so I can get their take on things. Waiting to hear from them on scheduling.

I don't want to upset anyone reading, but I always ask the question "How long if nothing works or no treatment". My answer is 3-6 months due to how aggressive it's been in the past. I'm sure I will try a trial if available, but weighing the choices of clinical trials and quality of life issues is another post altogether.

Anyways, already had a trip scheduled the first of Aug. and now working on a trip back to my home town in the Midwest (heat, humidity ugh!) to visit friends and relatives while on this short break. Thanks for all the knowledge and support this board and members provide!
Larry

Hopefully you'll find some trials with promise, Orlar. I've always been amazed at all the hope and encouragement this site can provide when doctors are all out. Will keep you in thoughts and prayers.
Tracy

I hope you will be able to find a clinical trial which will help!*hugs*

Hi Larry, Check out my DH's timelime below...it's similar to yours. May I ask what trial you are considering? We are investigating them now.

Dr. is calling insurance company about Lonsurf and DH may try that while we decide what to do next. If the Lonsurf is terrible, we will move on.

Thanks,
M

I just started my trial treatments last week. Feel free to PM me and I can go into a few details.

Larry

orlar wrote: I don't want to upset anyone reading, but I always ask the question "How long if nothing works or no treatment". My answer is 3-6 months due to how aggressive it's been in the past. I'm sure I will try a trial if available, but weighing the choices of clinical trials and quality of life issues is another post altogether.
....... Thanks for all the knowledge and support this board and members provide!
Larry

My apologies for not replying into your topic sooner buddy .... BUTT ....
what I quoted above IS the essence of this forum
we get the REAL DEAL details out there
we talk WHAT IS, not what if
WE are here for each other unconditionally
we pay it forward with knowledge, compassion, experience and understanding
we kick ass and take names

THAT is who you are ... WORD !

any time you want to make ANY post, "another post altogether" .... bring it
If you need to speak to us ... We need to hear you

Sending MEGA posi++++++ Vibes that the trial IS what you need

PM me anytime
CRguy

Thanks everyone for the good vibes!