Question on pains few weeks after end of Folfox

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Brearmstrong
Posts: 51
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Question on pains few weeks after end of Folfox

Postby Brearmstrong » Wed Oct 18, 2017 9:36 am

I realize that i just kinda barged in on this forum several months ago without introducing myself. How rude :shock: BUTT, I read everyone's responses several times a day as I go blindly through this fight; you all make it so much easier and education is the key! So I know AJQ posted similar question last week about pain and he is only 1/2 way through chemo and the pain was confirmed as multiple peritoneum/pelvic mets. BUTT, I want to ask again because I do have lots of low grade pains throughout my abdomen and what I think is ovary pain on one side. These all started around round 9 of 12 rounds of folfox and now I'm 3 weeks post last round and the pains continue. Did anyone have this? Nothing that takes my breath away or even requires tylenol but pain non the less. I have very high risk for seeding because my appendix ruptured and I fear HIPEC is in my future BUTT hoping and praying that my CT scan results this Friday will show that it's just pain from folfox, being constipated frequently, the fact that I have 50 less lymph nodes than before, or going into menopause from the chemo. ANYONE OUT THERE TO EASE MY WORRY WITH STORIES THAT ARE SIMILAR AND TURNED OUT TO BE NOTHING? Yes, that's me shouting out there because I'm in a complete panic. I don't know how oncologists can sleep at night knowing that they need to tell their patients bad news, they truly have difficult jobs...

Brenda
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. June 18 start xeloda 3000mg/day

User avatar
bitchslapped
Posts: 1405
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Question on pains few weeks after end of Folfox

Postby bitchslapped » Sun Oct 22, 2017 4:58 pm

Well Brenda, how about an official welcome to the forum then! Wish I could help you w/your question, but this reply will bump you up @ least. Your symptoms c/b from any # of things which is part of the frustration, however bouts of constipation can cause all kinds of discomfort. My mother suffered miserably w/IBS for so many years. My BFF had intermittent upper right side near diaphragm - dull aching/burning alternating w/sharp pain, sometimes radiating to upper right back shoulder area, then couple months later to lower back. All sporadic.

Two things were going on: gastritis dx'd first, then appendiceal cancer w/spread to peritoneum( as you might remember).

Let us know how CT results went.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Lee
Posts: 5563
Joined: Sun Apr 16, 2006 4:09 pm

Re: Question on pains few weeks after end of Folfox

Postby Lee » Sun Oct 22, 2017 7:13 pm

Yes, let us know how the CT goes.

So sorry you were over looked. I usually try to look for 0 responsers and like BS bump people back up.

I too don't have a lot of offer. I was told any pain lasting longer than 2 weeks needs to be checked out.

If you are constipated a lot, try increasing your water intake. It might help with some of the pain.

Remember there are options out there if your worst fears come true. Believe me many people are beating this cancer today. When I was diagnosed 13+ years ago, FOLFOX was new and a game changer. All the testing they do on the tumors was another big game changer.

Immunotherapy is the next new big game changer. BeansMama went from no surgery, every conventional chemo failed her, to she is recovering from surgery. Read about Sleen journey. She went from months to live to being NED today.

So know there is hope, all the best.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Brearmstrong
Posts: 51
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Question on pains few weeks after end of Folfox

Postby Brearmstrong » Mon Oct 23, 2017 6:53 am

Thanks Lee and BS. My CT scan went well. My spleen is still enlarged and the two lung nodules are stable. Oncologist thinks the pain is just from the Folfox taking it's toll and the surgery but I didn't have any pain the first 1/2 of the folox treatments. We are just on watch and wait for any peritoneum spread (convinced that this what this is) as the CT scan, MRI's and PET scans don't pick them up until they are bigger. I'm trying to be happy for the clean scan but I know that the next two-5 years are so crucial. If it spreads to the peritoneum, my oncologist knows that I'm off to the big city (MSKCC) to see about HIPEC and a specialist in appendix cancer. They've treated many where I am now (At the Yale Cancer Center) but once it spreads, I know I"m in trouble.

Everyone have a great, pain free day!!

Brenda
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. June 18 start xeloda 3000mg/day

nbrandt
Posts: 472
Joined: Sun May 01, 2011 7:42 pm
Facebook Username: craig.brandt

Re: Question on pains few weeks after end of Folfox

Postby nbrandt » Mon Oct 23, 2017 11:45 am

Hi,
My story is similar with colon cancer started in appendix. Just wanted to share I had an enlarged right ovary on my scans as I was doing Folfox. My double cousin diagnosed ovarian cancer while I was doing Folfox. When I finished I a
Had an ultra sound no ovarian cancer. 6 months later ovary returned to correct size. My pain must have been constipation.

Told by Mayo in Rochester I was in the group most likely to recur. We put our finances in trusts and learned to live scan to scan.
My survival percentage was low. But my sister told me there is a percentage so someone survives and it might as well be me.

I too used this site and had plans to go to Mssk if a recurrannce for hipec.

My Mayo Oncologist retired during my year four checkup. We discussed that doctors do not know why some people survive and others are still here. He said important for me to stay vigilant with cancer screenings.

Mayo released me Year Five. Back to my Primary. Just had my colonoscopy. Graduated from three years to five year colonoscopies.

Sending support and prayers.
NBrandt
DXCCT3N2aMx 5/20LN
Folfox10/10-4/11
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health

Brearmstrong
Posts: 51
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Question on pains few weeks after end of Folfox

Postby Brearmstrong » Tue Oct 24, 2017 1:59 pm

NBrandt,

Your message gave me lots of hope. I'm so happy for you to have passed the 5 year mark. I know too that my survival chances are lower for people in the same situation but with primary in the colon rather than the appendix. I try not to think about it and search for success LONG term survival stories for appendix cancer. They can be very hard to find which keeps me up at night. BUTT, this group has been so helpful and I just try to hang on every bit of information the members share so that I can be informed if things take a turn. I don't trust the CT scan-wish I did but I just know that they are little tiny buggers that are giving me the burning pain but radiologist can't see or doesn't know how to find... my nature though is to be skeptical of everything- not good for a cancer patient :D
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. June 18 start xeloda 3000mg/day

Brearmstrong
Posts: 51
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Question on pains few weeks after end of Folfox

Postby Brearmstrong » Sun Nov 26, 2017 9:22 am

Well pain has continued and my CEA is rising. So devastated that it seems folfox failed and I will be going to Sloane Kettering on Dec. 12th for a second opinion. Waiting to get a PET scan next week but appendix cancer mets can be very hard to pick up on scans. Ultrasound and CT scan shows nothing but pain and rising CEA say otherwise. I had to wait a year to change my insurance which would allow me out of my current network that doesn't offer HIPEC. Hoping I am a candidate and that surgery and HIPEC can happen in January. I can't stop crying thinking that my time here is too short- something we all worry about but with this set back, I am paralyzed with fear and deep sadness. Quite a battle as we are supposed to live each day to the fullest. Love to all.
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. June 18 start xeloda 3000mg/day

User avatar
bitchslapped
Posts: 1405
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Question on pains few weeks after end of Folfox

Postby bitchslapped » Sun Nov 26, 2017 4:55 pm

Hi Brenda, You must have had a rough Thanksgiving...the not knowing, the hurry up & wait that seems unending w/a cancer dx, the pain/discomfort. From AJQ's most recent post/signature, it appears a low PCI re: peri mets. My BFF had rt-sided pain & discomfort...occasionally enough to take her breath away a few times. Her HIPEC scheduled for this coming week. I plan to report back of what I know from her experience. Anticipated low PCI @ this point as under 10. Apparently a peri met very close to her liver was a cause of this pain which was removed during laparoscopy to remove appendix.

Though this is scary stuff, you are doing a wonderful job self advocating, forward thinking a year ago into any possible options in anticipation of possibilities that may be thrown in your path. I commend you for that. You are located in an area in the country w/several HIPEC, well-known institutions to seek out expert opinions (insurance allowing of course). With cancer it is just never easy. Horrible way for anyone & their loved ones to live. Until you're told you have peri mets, you don't have them. I don't know how else to live day to day & keep one's sanity otherwise. Yes, of course you want to know what the heck is going on, causing your pain. Increasing CEA if a good marker for you can be an indicator for cancer, but also inflammation & your spleen is not a happy camper according to your post. Then there's also your onc's opinion...and then there is yours & that counts too.

My son & I joined my BFF & her DH (the one dx'd appendix cancer, DH dx'd prostate cancer) for Thanksgiving dinner @ a chain restaurant w/poor food & service, which we knew going in. We were tucked in a booth in the back near the kitchen...basically left alone. We all had other opportunities for Thanksgiving, but wanted to get together before her trip to UCSD for HIPEC. Spent 4 hrs there. She called the next day saying they so enjoyed our time...it was perfect, just perfect.

We've got 20+ years on you, however my DH was 47 @ dx of mCRC & I remember then a kindness, a gesture, offering of prayer meant so much. Hoping you have special people in your life to help carry you through these rough patches + you've got us here on Colon Talk to listen, lend support. Sometimes we find joy, an escape in the smallest/simplest of things if we look for it. And sometimes I can go crazy too in disbelief of the twists & turns life takes us...sometimes seemingly bordering on the ridiculous of how much people have to go through & how much can one take. Guilty as charged here. I have not walked your walk, but I have had to walk it with those I love as caregiver (as DD, DW, stepmom, BFF) & is from that experience from which I pull, hang around here on CT.

Let us know results of your upcoming PET. Is Black Friday or Cyber Monday a diversion for you? :wink:

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Lee
Posts: 5563
Joined: Sun Apr 16, 2006 4:09 pm

Re: Question on pains few weeks after end of Folfox

Postby Lee » Sun Nov 26, 2017 5:15 pm

(((Brearmstrong)))

So very sorry for your recent news. I don't have much to offer, butt will keep you in my thoughts and prayers.

Extending a gentle hug,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Brearmstrong
Posts: 51
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Question on pains few weeks after end of Folfox

Postby Brearmstrong » Mon Nov 27, 2017 3:55 pm

Thank you Lee and BS. Your words do provide comfort to me in a scary time. I made some noise today and moved my MSKCC appointment from Dec 12th to TOMORROW! My PET scan isn't until Wednesday of this week back at Yale cancer center but the Sloan team said let's meet and review what we do know and come up with a game plan and then review the PET results later this week. I feel better making progress just in terms of next steps and will aid in my quest to fight the appeal process with my current insurance. If I can't get approval then I will need to wait until Jan 1st when I can switch insurance plans... not great but at least we are talking weeks rather than months.

BS- all the best to your BFF and I hope the surgery and recovery goes smoothly. Please keep us updated on how it goes!

Brenda
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. June 18 start xeloda 3000mg/day


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