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New Here Husband Stage IIIb

caregiver3
Posts: 49
Joined: Oct 2017

Hello Everyone!  I am new here.  My husband was diagnosed last month with colorectal cancer.  His tumor was in the rectum and the sigmoid colon.  He has already had colon resection surgery and met with the oncologist.  He is stage IIIb, lymphs were negative but he had 4 tumor deposits.  His tumor was 4a.  He also had perineural invasion.  He is having a port put in and a pet scan done and will start chemo in a couple of weeks.  He will be doing FOLFOX every other week for 6 months and wearing the pump home for 48 hours.  All of this is so overwhelming! 

Here are some of my concerns and I would love some advice on please.  First, his CEA levels don't seem to be coming down fast enough (this is the reason for the pet scan).  Before surgery they were 131 and now are 93.  So 15 days post op they haven't dropped very much.  This concerns me because I worry that the cancer is elsewhere.  There are 3 small nodules on his lungs that were found on a CT at 5mm.  Nobody seems to be too concerned about these being cancer and we are being told that we will watch them!  And we were also told that these may not be large enough to even be picked up on the pet scan.

Any an all advice would be greatly appreciated!  Thanks!   

Woodytele
Posts: 163
Joined: Apr 2017

If he responds to the chemo, his CEA should go down.  It makes sense that it is still high since there is nothing to combat it (yet).  My CEA would be lowered significantly after each chemo session.  Hopefully your husband will get the same results.  A pet scan may not show everything completely, and the lung activity may be very small, so what the Oncologist said makes sense. 

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Welcome to the forum.  We are sorry you are here.  Now that you are here you will find a very caring and knowledgeable virtual community that can provide so much support and insight.  It has for me....

My first CT scan a year ago when I was first diagnosed showed that I had 3 sub-4mm nodules on my lungs. My surgeon and oncologist told me not to be concerned about them as likely scar tissue from previous unrelated illnesses.  I did smoke in college so kept thinking somehow related.  After going through LAR surgery and 6 months of chemo I had a follow up CT scan and the 3 sub-4mm nodules remained unchanged.  My oncologist said given the nodules remained unchanged that was a good thing. Had they responded to the chemo that would have been a concern.  So, watching is a prudent course of action. 

It's been a year since I started this journey and gratefully after surgery and chemo I am presently NED.

Being a caregiver is so hard.  My husband has been my rock.  It sounds like you are the same for your husband, too. 

Cindy

 

mozart13
Posts: 118
Joined: Nov 2016

It is powerfull combo of drugs, and it is known to kill cancer. 

Can’t comment much on surgery and CEA, since I never had surgery, but his CEA is moving in right direction. The purpose of folfox is to kill any microcell or floating cells  if any left.

I just finished 8 rounds of folfox and 2 rounds of xeloda. Folfox want be easy, so focus on that, he will be very sensitive to cold, tired, watery eyes, hard time focusing, remembering things, for me day 3-5 were toughest, as I got more doses of oxylaplatin, there were days where I couldnt get out of house, though did try  to keep active, managed to gain weight, have neuropathy, but overall feel better since finished chemo.

Will do blood work in Decembar, my oncologist told me that we won’t pay much attention to CEA at that time as 5-fu is known to elevate CEA level.

Good luck to your husband!

caregiver3
Posts: 49
Joined: Oct 2017

Thanks to all of you for the responses so far!  Do you have any tips on supplies or things I should have on hand during his chemo?  I've already ordered him new gloves and a heated blanket. 

Slow-runner
Posts: 55
Joined: Oct 2017

Hi, My husband was also recently diagnosed with colon CA, mets to liver, lung. Doc does not mention the lung involvement.  His main tumor is in the ascending colon (which is why he had no symptoms, bowel related anyway).  He just completed his 4th chemo treatment.  With my husband I tend to concentrate on helping keep the rest of his body healthy.  We rely on the Dr. to take care of the disease.  I have protein drinks  on hand, soups or broths for the days after he is disconnected from the 5fu when he is typically feeling terrible. I'm buying more organic produce, avoiding processed foods as much as possible.  Biggest issue for him is constipation, better now that he got into a routine of taking stool softeners and a laxative.  When he feels good, which so far has been 11 out of the 14 day span, he is active and social. This is our new normal.  Hope all goes well for you and your husband, for all us - prayers.

Annabelle41415's picture
Annabelle41415
Posts: 6691
Joined: Feb 2009

Sorry you are here but you have come to a great group that can give you a lot of information.  I'm not able to help with what your husband has but wishing him well. Please keep us informed as to how he is doing.  Mine was rectal cancer and did Chemo/Radiation, surgery, and then Folfox.  Just keep note if he is doing the Oxiplatin that he will need to be aware of anything cold - and that means even in the grocery section at stores.  It will be a change in your life, modifying things that were normal, but it can be overcome.  You are a wonderful wife that is searching out answers for her husband - you need to be commended.  He will be probably taking steroids in that cocktail which could possibly keep him up at night.  It did me for days with sleeping very little.  Everyone is different.  I'll be praying for him.  Please come to this board with any questions.  We are full of answers as we've been there.  Wishing your husband the best - and you as well.

Kim

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I'm sorry that you have to go through this but you seem to be doing well in getting through the process. I think that it's natural to worry about cancer spreading in the treatment downtimes (in between therapy and recovery times) and I understand the worry. Objectively, the worry isn't rational but it can be very hard to be rational with cancer. I mentioned this to my doctor and he offered to schedule a scan. But the scan, if it found something, could change the treatment schedule and I really didn't want to do that. So, I think, that they can do scane from time to time and check to see if something has gotten bigger.

The CEA dropped about 25% which is a big percentage but I know that we all want it around 1 or 2. I have seen CEA numbers all over the place with a few people and I think that it works for a lot of people and maybe not so well for others. It's something to watch of course. I do hope that your husband does well through his treatments.

Gary_2016
Posts: 3
Joined: Nov 2017

Hello Caregiver3. I am sorry to hear about your husband. I too was diagnosed with a Stage IIIB tumor near the middle of my rectum. this was last December. Subsequent imaging showed it had spread to 4 surrounding lymph nodes and surrounding tissue. I am in otherwise good condition and good physical shape, so my oncologist chose a more aggressive route of treatment to stop the spreading since it was in the lymph nodes, so had my FOLFOX chemo up front for 4 months (8 rounds). I also had the "pump" that I would bring home for 48 hours. After that, I had chemo via the Capecitibine pill simultaneous with radiation. I had 28 rounds of this. I went in on August 21st 2017 and had a low anterior resection with loop ileostomy. After 6 1/2 weeks I had a flouroscopy with contrast to verify the join where my rectum had been removed was healed and did not leak. I then had my loop ileostomy reversed on October 23rd, 2017. 

I have been told that my body handled treatment remarkably well. I worked through chemo and radiation, although the 'sick' days I stayed home and did little, only answering emails that absolutely were needed. After both surgeries I came home on a Thursday and was back working from home the following Monday. 

The very best advice I can give is to stay POSITIVE IN MINDSET and focus on the short term goals, taking each week at a time. Don't get overwhelmed at all that is ahead. Our minds are powerful and a positive outlook directly affects healing, at least that is my opinion. As I look back at my treatment, which basicallly consumed all of 2017, the time went fast, and I still did many activitiies I enjoy, which included motorcycle riding, golf, and playing with the grandkids. They have come so far with cancer research and can actually BEAT CANCER these days!! It is not like it was 20 years ago. Stay focused on the short term, stay positive, and you and your husband will see that there is a back side to look at, and one day this will all be in your rear view mirror!!!

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Gary, thank you for sharing your story.  It seems the most active people, those like you who continue to work and won't allow cancer to be your main focus...you are have the best outcomes.  

 

Gary_2016
Posts: 3
Joined: Nov 2017

BRHMichigan, I know it gets depressing and overwhelming at times. I did my share of crying and being scared as well, but I didn't let it consume my thoughts or take over. Greiving and being scared is part of the process as well, so I have learned. We can't pretend it isn't scary, but we can choose not to let those thoughts take over. I see so many people these days that are saying they have been cancer free now for 5, 8, or even longer than 10 years. There is no reason that you nor I can't be one of those people!

caregiver3
Posts: 49
Joined: Oct 2017

Thanks to all of you for sharing and for all the concern and info!  It feels good to be able to come here and share my fears and ask questions and get support.  I am so scared though!  I don't share this in front of my husband because I want to be strong for him.  But with him only being 49, us having 3 kids, and together for 21 years, it scares me to think that something could happen to him. He never even gets a cold and now this!  He is "my person" and the love of my life and I will fight along with him to put all of this behind us!  Thanks again to all of you. 

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

Speaking from the other side, I think that it’s good to be strong but it’s going to be tough for you as well and sometimes you may need to share that.

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

surprise smiley  What!   

 

Sorry, couldn't resist. 

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