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Thread: Mother in law with reoccurrent colon cancer

  1. #21
    Hospice isn't just a resource for end stages & palliative care; they also have many good support resources for caregivers and patients while in treatment.

    I picked up a booklet "A Different Season: The Hospice Journey" (Limbertwig Press) by G. Leigh Wilkerson from hospice at the cancer center. Pages 9 and 10 in particular struck home with me.

    MM
    Caregiver to my significant other.
    May 2008: transrectal procedure for Stage I CRC. Age 59
    April 2013: Finally "sick enough" to go to the Dr. CAT scan.
    May 2013: PET scan, surgical biopsy. DX'd terminal, inoperable, recurrent, metastatic, hypermetabolic StageIV CRC w/mets to liver & lymph node in neck
    June 2013: Port placement. Oxaliplatin, Erbitux, Xeloda
    August 2013: PET scan; NED
    September 2013: surgical repair of inguinal hernia
    November 2013: PET scan; NED
    January 2014: Changed out oxi for Irinotecan; continue Erbitux, Xeloda
    March 2014: PET scan; NED

  2. #22
    I love that you hug her when she crys. Please keep doing that. It's exactly what I want when I get upset and my DH has a hard time responding due to how he was raised! We've had many training sessions over this one! Hope things are improving for her now, and that she is getting clarity on a course of action.

    Cheers
    DulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

  3. #23
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    Hello all, my mother in law and I had some alone time on Saturday. I told her she can talk to me anytime about what all is going on. We meet with both the surgeon and oncologist this Tuesday. We will have a better picture about everything then. But she did clarify that it is in one lymph node. Her uterous lining is also inflamed which is why she has an obgyn apt next week. She does have a cyst in one of her ovaries and from what she was saying they are 100% sure it's a cyst. She is very scared but I told her I have read lots of stories of people living 10 years with cancer. She seems to want to fight this as long as she can right now. Which is good because I can't lose her anytime soon. She has become a huge part of my life and I don't know what any of us would do without her. I'll give an update after Tuesday. Thank you for reading these.

  4. #24
    thats good you were able to talk to her, you probably both feel better having that issue off your minds- hope things arent so bad keep us updated
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  5. #25
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    Update: Today was the meeting with the oncologist. She had already answered most of my questions without me having to ask them. She is starting folfox December 2nd. It will be every other week for 6 months through a port and pump, the pump will be for 48 hours I believe. She is testing for the kras mutation. When I asked if the treatment was to cure, control or treat symptoms she just said all of the above. From what I understand the only real way to actually cure colon cancer is to remove it by surgery? Feel free to correct me if I am wrong. It is inoperable and she said my MIL had reached the quota on surgery in the colon.She is in stage 4. It's in a lymph node and she said there is very little disease. We mentioned a vacation we have booked in 9 1/2 months the dr. Said to plan on going but to get travel insurance. That kinda scares me. My MIL is considering taking disability, which I think is good because she gets stressed really easy. The dr. Also already brought up clinical trails, she said we aren't there yet but sometime in the future that may be an option. She knew I had done research on all of this when she mentioned doing the kras testing, I said I was going to ask about that but she beat me to it. She asked if I saw the pet scan results, which I haven't so she printed me a copy but it got lost. So I guess now we take it one day at a time but I have a feeling this may be a long journey.

  6. #26
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    I forgot to put she will also be on avistin.

  7. #27
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    1,492
    Sounds like you have a good doctor and a good plan. You can always get another copy. My son's hospital (MD Anderson) has a personal file that we can access online and print out the reports if we wish. They also do free CD's of CT scans and Pet scans. Travel insurance is good because surgery or hospitalizations sometimes are necessary. You may just have to move your date. I took insurance out for our trip this past Oct., but we didn't need it. He did however go straight from the airport to the hospital. Guess we were lucky. Insurance is not that much, but the tickets are a significant amount for most people to lose. We will be here for the journey. Prayers that it goes well for both of you.

    Amanda
    Caregiver to son, 32 , 5/18/2011 Stage IV
    Sigmoid colectomy , liver biopsy 5/18/2011
    6cm sigmoid tumor, low grade (well-to-mod. differentiated)
    6 of 33 lymph nodes +
    FOLFOX /Avastin 6/2011-8/2011
    Rt hepatectomy on 9/20/2011---70%
    2012
    FOLFOX /Avastin 4 cycles 1/31 stopped-low platelets
    3/5 CT clear
    4/ PET scan showed peritoneal mets
    4/24 splenic embolization for low platelets
    FOLFIRI/ Avastin 5/12-8/12
    Consult for HIPEC 8/12 denied---tumors too many, possibly in ureter.
    5FU/ Avastin 8/2012-2/2013
    12/5/12 scan tumors stable
    12/12 aranespt
    2013
    3/5 tumor progression in abdomin
    Restart FOLFIRI/ Avastin with lower dose of Irinotecan 3/11-3/25
    nuelasta shots
    ER - bowel obstruction 4/4
    Port removed 4/12
    Port replaced 5/9
    ER 30 hrs
    Erbitux in, Irinotecan lowered 5/20 & 6/17
    9/17scan indicates stable
    9/18-27 & 10/7-11 small bowel obst.
    Erbitux & Irinotecan 11/5, 12/2
    Bowel obst. 12/31
    2014
    1/8 urether stent
    1/17 Hospice
    3/27 started his heavenly journey

  8. #28
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    So I have some new concerns, when at the dr. On the 19th my MIL had lost 10 lbs I'm assuming that's since the last time at the dr. Just about 3 weeks ago. I'm pretty positive she has not been on a diet or exercising so that's why that concerns me and I know that unexplained weight loss is a sign of cancer. We know she has cancer but what's the likely hood of the cancer causing the weight loss? She has said she has had an upset stomach but didn't say if it was diahrea or what. She also didn't mention this to the dr. When asked if she had any symptoms. I'm not sure if she knows the symptoms of colon cancer or if she is just maybe trying to hide it from the dr. Or if she is trying to make light of the subject. They did blood tests at the office and said she is dehydrated but she said she is drinking plenty of water. Another concern of mine the inflammation of her uterine lining and the cyst in her ovary and it possibly being cancerous. She does go to the obgyn on Monday so I guess that is another wait and see. Her surgeon wanted her to see the obgyn but when we told the oncologist that her reply was " well do we really need to worry about that?" Well hell yea we do anything that looks abnormal should be tested or scanned in my opinion. That freaked me out when she had that reaction it was almost like she was saying she may only have months to live why put her through more tests, she may have not meant it like that but it's just weird how she wouldn't think it was important.

    Also what should we expect from the round of chemo? Do side effects start right away? The dr. Said the first one will last 5 hours and the pump is either 46 to 48 hours. She gets the port dec 2nd and chemo the next day.

  9. #29
    Quote Originally Posted by Pinktaurus732 View Post
    So I have some new concerns, when at the dr. On the 19th my MIL had lost 10 lbs I'm assuming that's since the last time at the dr. Just about 3 weeks ago. I'm pretty positive she has not been on a diet or exercising so that's why that concerns me and I know that unexplained weight loss is a sign of cancer. We know she has cancer but what's the likely hood of the cancer causing the weight loss? She has said she has had an upset stomach but didn't say if it was diahrea or what. She also didn't mention this to the dr. When asked if she had any symptoms. I'm not sure if she knows the symptoms of colon cancer or if she is just maybe trying to hide it from the dr. Or if she is trying to make light of the subject. They did blood tests at the office and said she is dehydrated but she said she is drinking plenty of water.
    Breathe. Your MIL has been diagnosed, staged, and is scheduled to begin treatment.

    MM = not a doctor. that being said, the cancer probably caused the weight loss. If it's causing weight loss now, there's a good chance she will lose more weight between now and the time she starts chemo. My SO lost nearly 50 lbs; 30 of them were in the 6 months before he began treatment. When he began treatment, his weight stabilized until he had a bout of diarrhea and lost 8 lbs in a week. He lost about 12 lbs over the course of the next 8 wks, and has since regained about 15 lbs. He's maintained that weight gain for about 6 wks.

    Your MIL may have the option to consult with a nutritionist. Her doctor may prescribe mineral supplements. She may enjoy healthy smoothies. If it's a fruit smoothie, increase calorie content by using juice instead of water and adding a banana, or peanut butter, or to the recommended serving size of quality protein powder (the full serving size may cause constipation). If it's a vegetable smoothie, increase calorie content by adding half an avocado. If she doesn't enjoy smoothies, products like Boost, Ensure, and Carnation Instant Breakfast may help.

    Quote Originally Posted by Pinktaurus732 View Post
    Another concern of mine the inflammation of her uterine lining and the cyst in her ovary and it possibly being cancerous. She does go to the obgyn on Monday so I guess that is another wait and see. Her surgeon wanted her to see the obgyn but when we told the oncologist that her reply was " well do we really need to worry about that?" Well hell yea we do anything that looks abnormal should be tested or scanned in my opinion. That freaked me out when she had that reaction it was almost like she was saying she may only have months to live why put her through more tests, she may have not meant it like that but it's just weird how she wouldn't think it was important.
    I agree that yes, your MIL does need to worry about following up with her OB/GYN. I understand why you might be freaked out and I think it's really important for your MIL to speak up for herself, but don't take it like the doctor is trying to give you a coded message about this being worst-case-scenario. The oncologist is probably just locked into the CRC diagnosis and focusing on that.

    *IF* the stuff going on with the uterus and ovary are cancer, they may or may not be CRC.

    Cross that bridge when you come to it.
    Don't borrow trouble.
    Don't put the cart before the horse.
    Take it one thing at a time.

    Quote Originally Posted by Pinktaurus732 View Post
    Also what should we expect from the round of chemo? Do side effects start right away? The dr. Said the first one will last 5 hours and the pump is either 46 to 48 hours. She gets the port dec 2nd and chemo the next day.
    Side effects are specific to the medication and the individual. If you put 10 people in a room who had the same kind of cancer and received the same dose(s) of the same kind(s) of chemo, all 10 might have the same side effects or they might be 10 people who are each experiencing different side effects.

    The people I know personally who went through chemo had a really easy time of it the first two or three infusions. The third or fourth one hit them so hard, it was like being slammed against a brick wall. Not everyone has that experience. Some people have an easy go of it; others have it rough from the start. God bless them both.

    While he had an easy time of it for the first 2 or 3 infusions, my SO *did* experience some side effects from the first infusion. His chemo causes muscle cramps and increased sensitivity to cold. The muscle cramps depend on how fast they give him the infusion. The sensitivity to cold seems to have hit a steady level.

    My SO's toenails began to come off about 2 months in; his fingernails began to loosen about 4 months in. He developed cracks on his feet (from Xeloda) within 6 weeks; they started on his hands a few weeks after that. The rash (from Erbitux) started by the second week. He hasn't lost his hair.

    My friend had a different kind of chemo, on a different schedule, because she had a different kind of cancer and it was Stage II, whereas my SO's was Stage IV. My friend's hair fell out between her second and third infusions, and her nails began coming off several weeks after her fourth (and final) infusion.

    Neither my friend nor my SO vomited much. Both were fatigued and their sense of taste changed. Both developed sensitivity to cold, and both experienced low blood pressure from time to time. I *think* it's related to dehydration, but I don't *know* that. It's just something I've noticed.

    My friend was constipated during chemo--painfully so. My SO is prone to diarrhea.

    Infusions take time. She can read, use a laptop/tablet, knit, crochet, sleep, visit, whatever she feels like doing...provided she can do it from the infusion chair.

    Don't wear yourself out now--this is a long race, and you're not even out the gates yet.

    MM
    Caregiver to my significant other.
    May 2008: transrectal procedure for Stage I CRC. Age 59
    April 2013: Finally "sick enough" to go to the Dr. CAT scan.
    May 2013: PET scan, surgical biopsy. DX'd terminal, inoperable, recurrent, metastatic, hypermetabolic StageIV CRC w/mets to liver & lymph node in neck
    June 2013: Port placement. Oxaliplatin, Erbitux, Xeloda
    August 2013: PET scan; NED
    September 2013: surgical repair of inguinal hernia
    November 2013: PET scan; NED
    January 2014: Changed out oxi for Irinotecan; continue Erbitux, Xeloda
    March 2014: PET scan; NED

  10. #30
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    Thank you for your reply. The whole wait and see thing is not very easy lol. I hate this whole chemo thing for her, I hope the side effects aren't too hard on her and that her body will react to it properly. Only time will tell I guess. My wife and I have been discussing this a lot, if this chemo doesn't work we will see if her mom would be willing to go to Texas and see if they could offer sometime that would work. We aren't there yet but chemo is only 2 weeks away. My own mother had seizures with chemo and couldn't do it, I really hope that isn't the case with my MIL. Speaking of side effects, to help cheer my MIL up a little tiny bit I got her some Coach gloves, hat and scarf. We both love that store, I love it a little too much! She had a big smile on her face when she opened the box so that made me happy. Has anyone had a chemo pump here before? I thought about getting her a Coach swingpack purse to put the pump in but I didn't know if that would work. I thought getting a purse to put it in may make her feel less self conscious about having it in the first place.
    Hopefully we will have some news from the obgyn on Monday to see if there is any cancer in the uterous or anywhere near there. Thank you all for reading!

    Alicia

 

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