Back on the Chemoland Rollercoaster again

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AJS
Posts: 753
Joined: Sun Feb 17, 2008 10:47 am
Facebook Username: Angie Jennings Stratton
Location: Virginia

Back on the Chemoland Rollercoaster again

Postby AJS » Thu Jul 04, 2013 5:59 pm

Hi All!

Been a while since I've been on here to post, even though I'd pop in to see how everyone was doing. I see a lot of new folks on here and happy to still see lots of "old timers" as well. :D Well......I'm playing the "whack a mole" game once again. I have had my 3rd recurrence. Fortunately it was found in the early stages....just cells, no mass which equals NO SURGERY (oh happy day). My Avastin maintenance treatments did what they were supposed to do. I am back on Folriri w/Avastin and have already done 3 treatments and only 9 more to go.

In December I will have my 6 year "Cancerversary", started out as a Stage IIIC but have been a Stage IV since 2009 recurrence and still hanging in there living life to the fullest I can with only the occasional bump in the road.

Onward I go......
Angie
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: Back on the Chemoland Rollercoaster again

Postby PainInTheAss » Thu Jul 04, 2013 10:35 pm

Hello!

And good to hear you are still in the race and full steam ahead at that! I am newbie, full of questions and ever so grateful to hear from people who are here years later and still doing well (considering).

And posting here is a nice break from telling loved ones the "bad news" (still have a few friends to tell - not fun, though everyone has been so wonderful and supportive!).

I'm wondering how they have been doing your monitoring (how often and scans or blood tests - or both each time - or only scans if blood tests warrants it, etc). I read here not too long about that someone made it to the 5 year mark with no reccurrance so the next scan was about a year or so later and they found a "grapefruit" size tumor! ugh! How disheartening! (it's like the cancer "heard" that they were not going to scan for awhile and said, "Come on guys, now's our chance!" I have decided to constantly lie to my cancer about when my next test is so it will stay paranoid... haha).

Have you continued to keep up with close monitoring up until now because of the first two reccurrances? Thank god you caught this one so early!
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

lorrainem
Posts: 819
Joined: Tue Dec 18, 2007 2:34 pm
Facebook Username: https://www.facebook.com/lorraineaminogue
Location: NY

Re: Back on the Chemoland Rollercoaster again

Postby lorrainem » Fri Jul 05, 2013 2:42 pm

Hi Angie! Knowing you only checked in once in awhile I felt comforted by that. I'm sorry to hear this news. You certainly are a chemo vet. Good luck on this go round.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

AJS
Posts: 753
Joined: Sun Feb 17, 2008 10:47 am
Facebook Username: Angie Jennings Stratton
Location: Virginia

Re: Back on the Chemoland Rollercoaster again

Postby AJS » Fri Jul 05, 2013 7:31 pm

Thanks Lorrainem.......Good to hear from you. And yes I feel like a chemo vet. I keep telling my nurses and Onc that I am a professional at this and I'm going to apply for a job there. :lol: Hope you are doing well!

PainInTheAss....I think I like calling you Newbie better! :lol:
To answer your questions........Ever since I was diagnosed back at the end of 2007, I get a CT Scan every 3 months. Usually when my scan is scheduled, my appt. with my onc is usually scheduled for the next week and I have my blood work done then. So I have both done every 3 months when I have a "break" from cancer. During chemo I don't have a scan until all treatments are done, but blood work is done every 2 weeks on treatment day.

My Onc, I am happy to say, is very diligent. I've never had a problem with my insurance questioning the frequency of scans/blood work either.

My cancer was a surprise when it was found. I had NO symptoms. I originally had my 1st resection for diverticulitis and my gastro surgeon found the cancer then. After mop up chemo, had a 6 month break before 1st recurrence. After surgery and mop up chemo, had a 2 year break, then 2nd recurrence last year. After surgery, ileostomy bag(had that thing for 8 long weeks) and take down (oh how I hated that bag...put me in the hospital twice), did mop up chemo and had a 6 month break and now in 3rd recurrence. But happily only cells this time. I am fortunate in that I tolerate chemo very well. Yes I have a couple of side effects but it's usually on the weekend of my treatment week. I have never missed a day of work during chemo and haven't changed my routine at all. The only concession I made last summer and this time around is that I did get a temporary handicap tag (6 months) to use for parking. I usually run a lot of errands after I finish my treatment on Day 1 and I don't feel like walking from one end of a parking lot to whatever store/business I am going to. This is my story....I'm sure I answered your question and then some. :lol:

Hope you are doing well. How are your treatments going?

Angie
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Back on the Chemoland Rollercoaster again

Postby Bev G » Fri Jul 05, 2013 10:06 pm

Hi Angie,

I'm so sorry you're going back in the game. (ha ha, game--NOT) Always have loved and very much admired your attitude, and continue to. What's the chemo going to be this time (I'm sorry if you already said). Nothing shows up on PET/CT huh? GOOD!

Love and many hugs!

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

AJS
Posts: 753
Joined: Sun Feb 17, 2008 10:47 am
Facebook Username: Angie Jennings Stratton
Location: Virginia

Re: Back on the Chemoland Rollercoaster again

Postby AJS » Fri Jul 05, 2013 10:58 pm

Hi Bev!

I guess we could call it "The Whack A Mole" game. :lol:

I am doing Folfiri w/ Avastin. I've done this one before and I respond to it. Couldn't do Folfox again this time because I've still got neuropathy in my feet and a little bit left in my fingertips from last summers chemo adventures.

Hope you are doing well!

Angie
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: Back on the Chemoland Rollercoaster again

Postby PainInTheAss » Sat Jul 06, 2013 5:27 am

AJS wrote:PainInTheAss....I think I like calling you Newbie better! :lol:


Haha... It just seemed so fitting cuz my butt hurts so bad!
To answer your questions........Ever since I was diagnosed back at the end of 2007, I get a CT Scan every 3 months. Usually when my scan is scheduled, my appt. with my onc is usually scheduled for the next week and I have my blood work done then. So I have both done every 3 months when I have a "break" from cancer. During chemo I don't have a scan until all treatments are done, but blood work is done every 2 weeks on treatment day.


Okay, good to know. They mentioned "checking every three months" but didn't say how they were going to check. I am guessing both scans and blood tests. I'm glad they are not "scan-shy" like some docs from what I've heard. I feel confident that I am in good hands.

My cancer was a surprise when it was found. I had NO symptoms. I originally had my 1st resection for diverticulitis and my gastro surgeon found the cancer then. After mop up chemo, had a 6 month break before 1st recurrence. After surgery and mop up chemo, had a 2 year break, then 2nd recurrence last year. After surgery, ileostomy bag(had that thing for 8 long weeks) and take down (oh how I hated that bag...put me in the hospital twice)


How did the bag put you in the hospital? They are telling me I will likely need a permanent colostomy because my tumor is right next to my sphincter and only 15 percent chance they can save it even with a complete response. I'm okay with that, but I have been worried about complications. Not sure if a temp ileostomy would have more complications than a permanent colostomy, but it's good to know what "might" happen.

did mop up chemo and had a 6 month break and now in 3rd recurrence. But happily only cells this time. I am fortunate in that I tolerate chemo very well. Yes I have a couple of side effects but it's usually on the weekend of my treatment week. I have never missed a day of work during chemo and haven't changed my routine at all. The only concession I made last summer and this time around is that I did get a temporary handicap tag (6 months) to use for parking. I usually run a lot of errands after I finish my treatment on Day 1 and I don't feel like walking from one end of a parking lot to whatever store/business I am going to. This is my story....I'm sure I answered your question and then some. :lol:


Yes, but every survivor story is an encouragement!

Hope you are doing well. How are your treatments going?


I start with chemoradiation next week. I've been going through old posts on here and compiling advice for handling side-effects after getting a few tips from a few people (Jaynee's posts are sooooo helpful! I PM'd her to get more advice as well) so I feel pretty "armed" with real knowledge about what to expect and how to best handle symptoms (rather than the vague "the last few weeks will be bad" the docs keep saying). I have a recto-vaginal fistula, so the diarrhea is a big concern. The docs all recommended a temporary colostomy before I started the treatment, but I didn't want an additional surgery and to have to wait until it healed to start treatment. I'd rather deal with the diarrhea than postpone treatment. I'm glad to know now that there are some things you can do for it.

Thanks so much for responding. I hope your next round of treatment goes well for you!
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

AJS
Posts: 753
Joined: Sun Feb 17, 2008 10:47 am
Facebook Username: Angie Jennings Stratton
Location: Virginia

Re: Back on the Chemoland Rollercoaster again

Postby AJS » Sat Jul 06, 2013 4:43 pm

When I had my 2nd resection last January, my gastro surgeon found CC on my bladder and called in a Urologist to work on it while I was still in surgery. A 4 hour surgery turned into a 9 hour surgery. I became a member of the teeny tiny bladder club. :lol: Anyway......because of the extent of my surgery, my gastro surgeon decided to give me a temp. ileostomy so that everything inside could heal stress free. I had no problem taking care of the "bag" itself..ie..emptying, changing, etc..., but everything I ate and drank just went straight from my mouth to the bag. I was constantly having to empty it. My body wasn't absorbing any nutrients from what I was eating and all of my minerals (salt, magnesium, potassium, etc..) were at rock bottom. Dehydration was another major issue as well even though I was constantly drinking fluids. My husband kept fussing at me because he didn't think I was drinking enough but my Onc finally told him that she could hook a garden hose up to me and it wouldn't help. He never fussed again! :lol: After the second time of being admitted to the hospital for these issues, not to mention near kidney failure, I decided that the bag had to go or it was going to kill me and my Onc agreed with me. Saw my gastro surgeon day after I was released from hospital and when I left her office, my takedown was scheduled for the following week. I was never more excited about an upcoming surgery, let me tell you. By the end of the week of my takedown, I felt like my old self again and went back to work the following week. I had been off from work for 2 1/2 months. I think I was an exception to the rule with the ileostomy, because most every post I read about them here, everyone didn't seem to have the issues that I did.

Angie
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin


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