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PET/CT results and update

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I was scheduled for chemo last Friday, but Thursday night I got very ill. Sorry for the graphics, but projectile green liquid diarrhea, and vomiting. Often both ends at once, including accidents over the last couple days. Now that was embarassing. (I haven't had that happen since I was very ill in 1st grade.) And I have had a fever. I hoped it would clear up for chemo on Friday, but it did not. Chemo was cancelled, and rescheduled for next Wednesday. I couldn't do it Monday (the big day for getting our requests in to the county and township for our land split to dig out of medically induced financial ruin), and there were no openings today. Normally I'd love having the break, but not when I'm too sick to enjoy it anyway... I was supposed to get my PET/CT results, so I was bummed to have my appointments cancelled.

But after asking, my oncologist did let his nurse call me with results. Good news/bad news.... My results were not what I'd hoped, but I am headed in the right direction at least. I got updates on some nodes. Lymph node in the left paratracheal region, just superior to the aortic arch is now 1.2 X1.2cm with SUV of 2.8. Mid-April it was 1.4X1.4cm with SUV of 6.7. They still don't tell me the extent of my hypermetabolic retrperitoneal lymphadenopathy. They say it is improved, and give two "for example" comparisons. I want to know my TOTAL involvement, but no one will tell me - not last time, and not this time. I am going to stop in and ask for a copy of my scan Wednesday and ask that the radiologist give me the TOTAL count for retroperitoneal node involvement. One in the aortocaval region at mid-kidney level is now 1.0X.09 with SUV of 4.0. Mid-April it was 1.3X1.0cm w/SUV of 6.7. A left one just inferior to kidneys is 1.1X.09cm w/SUV 4.5. Mid-April it was 1.6X1.0 w/SUV 10.9. So that one has really shown a lot of improvement!

I am showing more and more benign arthritic changes with each scan. I really think chemo has caused this. The bone island in my right iliac bone is unchanged, so it is still considered benign. It still worries me some. I have been complaining of pain in my right hip since last fall and my onc always blows it off. What if this is actually cancer in that bone, and not a bone island? I need to go back and see when they first mentioned this on my scans - does it correlate with when I started having the pain that is not in my muscles, and is really hard to pinpoint - kind of feels like it is my right kidney, but not really. I don't trust scans and radiologists much after my CT that showed my "mild sigmoid colitis with some reactive lymph nodes." Somehow when that turns out to be stage IV colon cancer, and the radiolgist didn't even suggest any follow-up, I've lost faith. I asked my colon cancer nurse navigator to help me get more info from the radiologist. She is trying to get him to call me and answer my questions.

The conclusion is I am having a partial, but incomplete, response to treatment. It is unkown if I can get back to what appears to be NED ever again. We do know when I appear NED (No Evidence of Disease), I am not really anyway. So for now, chemo continues every 2 weeks until my next scan in 3 months. I did 7 cycles w/o any delays until this one due to being so ill. Now I'll have another 7 with no breaks. Fourteen in a row with only a break for being sick - not for anything fun. (I did have an extra 3 weeks off before this last 7, and I had over 3 months off last summer.) And now with my schedule moved, I will have chemo over Labor Day weekend - so much for any hope of a camping trip this season. After missing my trip to Iowa to ride RABRAI with family and friends (my husband had a tooth emergency - broken, abcessed and major infection, so it had to be removed and we didn't get to go), I was really down. Getting so sick for the weekend, and my scan news didn't help. I was really hoping that nothing would be seen and I could move chemo out to every 3 weeks.

The good thing is I am moving in the right direction and have no spread. But I really need a break from cancer - I need to have a few days of doing "normal" things from my "old" pre-cancer life, and stay busy having so much fun that I forget about thsi for a while. But on this every 2 week schedule, and with no $$, I guess it just isn't going to happen. My work hard/play hard philosophy in life has been thrown another curve. I really miss my travels, my biking, my bowling league and more - the regular things I always did and haven't been able to do much of the last 2 years. I should be celebrating that I had no spread and did show some regression. I am embarassed that I am not more thankful and not feeling like celebrating that. I really just want a break from this all again.

I lurk here once in a while when I have a few minutes, but just haven't had the time to be on much. So I read but don't post often. Hoping everyone is enjoying their summer.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Just a big hug, Kat:)

(((((KnM)))))

-c

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

you the regression will not continue in the next few rounds,and nodes will disappear definitively in a few more cycles? at least that's my hope!.
Hugs dear semi Mexican friend! hahaha!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Well, to go with my scan, I now also have a slight rise in CEA. Instead of continuing the downward trend, I've gone from 3.2 to 3.4 - moving up. Overall I just have not been doing well lately, and it scares me a bit. We'll wait and see what happens with my next CEA check on the 18th.

I'm wearing out, and I'm not happy about it. I have so much to get done in the next few months and I am getting worried that I just can't do it... I want some energy, and more than 3 days out of 14 with no severe diarrhea, no more fevers, and to stop the crazy almost passing out troubles I have been having...

Still really trying to get back to my place in Mexico, but it isn't looking good for the near future. Do you think you are going to make it down soon? Not giving up hope on my end yet.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

problem since , of course you know it, fluctuations are normal ,concerning scans I think you got a good reason for hope there since no spread and a general shrinkage are in my opinion good results ,I think you are a little bit down this days but in the near future you will see the thinks in a different way! I will pray for you my friend ,cheer up!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Thanks Craig!

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

Good that it hasn't spread, and that some areas are decreasing. You are thought of often and hope that your next chemo doesn't get you so sick.

Kim

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Kathryn,
Shrinkage is good my friend and lower SUV's. Dick is feeling the same way in regard to wanting a break. I know both of you are dealing with cancer in your lymph nodes and it just seems to hold on. His scan is tomorrow. I'll let you know how it goes.

Thinking of you.

Aloha,
Kathleen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i hope the regression continues.
i love my tcm and supplements, especially for digestion support.

hugs,
pete

SandyL
Posts: 220
Joined: Feb 2009

Would love to be able to physically give you a great big ole hug, Kathy.
You are such a trooper.
Sandy

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kathryn,

Well, overall, your scan was actually a good one. Lessening in both size and uptake is a good thing! My last scan showed decrease in uptake but absolutely no change in size in most, but a 2 mm growth in two nodules. I get so sick and tired of it too- I know how hard it is to keep going on and wondering if this is ever going to stop and how it will turn out. I imagine it's hard for you to try to be positive when you haven't been feeling well. That's the worst. I wish I had some great advice to give you or something, but all I can offer is to say I'll be praying for you- to have more days of feeling well and to regain your energy again (and of course for the nodules to shrink and be PET-negative).

Hang in there- it's all you can do for now, so might as well be upbeat.

Hugs to you,
Lisa

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Hi Kathryn, I am sending prayers your way and hope the shrinkage continues.
God Bless,
Judy

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Hi Kathryn, I am sending prayers your way and hope the shrinkage continues.
God Bless,
Judy

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Great to hear from you! hang in there! Hope you feel better too!

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