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canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

new here

Postby canadiandaughter » Sun Aug 17, 2014 11:29 am

I have been lurking reading all the posts for awhile, thank you all for sharing, I feel I have learned a lot already!! I don't know any of you but have cried tears for those who are really struggling and have been cheering for those who have had successes!! Cancer is not fair but I know this board is going to be my life line!! My father was diagnosed with stage iv colon cancer the beginning of July. He has 5 spots on his liver, 2 in his lungs, some suspected in lymph nodes by his colon and then the nasty one in his colon that is causing him grief that brought him to the doctor. He will be 80 years old in Feb but I must say he is a very healthy and active almost 80 year old, in fact after his oncologist met him he said I had a plan but am changing it and will fight this aggressively. . On Tuesday we start chemo, 6 rounds of folfiri and then will get a scan to see what is going on. I am concerned as I have read that most of you also have another drug added to the folfiri. Is that one harder on a person, and has maybe been left out due to his age? He is also a mild diabetic and had heart stents put in due to chest pain 15 years ago but has been fine since. I have been trying to educate myself so that at our appt after treatments I know the questions to ask and understand what the doctor is telling us.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

User avatar
singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: new here

Postby singingholly » Sun Aug 17, 2014 1:32 pm

Hi, I'm sorry to welcome you on board... Is very good that the onc changed his mind after seing your dad! Folfiri is a quite effective and aggressive therapy. You may add oxaliplatin or bevacizumab but I think that your dad's age forces the doc to measure his steps carefully. Maybe he will add another drug after seing your dad's reaction to chemo or maybe he is saving bullets for the future... Did he talk of surgery?
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: new here

Postby canadiandaughter » Sun Aug 17, 2014 1:43 pm

He told us that at this point it is "incurable". If he responds to chemo that might change, so I did ask if also at that point he would talk surgery and he said he would
discuss that then. Sadly to get him in quick, we got a doctor who will be leaving soon so we will have a new doctor by the time he goes for his scan in 12 weeks. So we might even get another opinion next appt. My dad also chose not to hear hear about chances or approx time left with us, thank goodness. I feel that being the doctor was agreeable with that and didnt say maybe you need to get your affairs in order, that it is not a short time like weeks or a few months. He has no liver issues at present, no pain. Just diarrhea from the colon blockage which the doctor is hoping will shrink and get better with chemo. Our cancer center is new and small then what you have. Our doctor we currently have is here one day a week, which makes things difficult as well, but we are thankful that our parents to do not have to travel very far for treatments as our mom is not handling this very well and that would add to the stress.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: new here

Postby justin case » Sun Aug 17, 2014 1:51 pm

When talking about cancer drugs, you must understand that they are basically a poison designed to kill blood cells. All cancer drugs are very dangerous, and must be so monitored. Your oncologist is trained for this administration, and knows more about you Dad's situation than we could ever know. Many here have had that protocol, and could probably help with the side effects. I think I would be in conjecture with everyone, when I say, every case is different, and until the right protocol is found, you must rely upon your Oncologist's training. I'm doing fine, but to get here, I was poisoned (chemo), burned(radiated) and cut(surgery), and then poisoned again. Do you trust anyone that much, to disobey your doctor :roll:
There are many drugs that can constitute a protocol, but you must rely on your doctors training. We'll be here if you need guidance through side effects, and keep you informed as this journey progresses, but you have to have trust in your medical team with utmost confidence.
regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: new here

Postby canadiandaughter » Sun Aug 17, 2014 2:33 pm

Sorry I was misunderstood, I would never go against the doctors choices, I was just wondering why some have the extra drug added to the folifiri and if it is effective enough without. I am just trying to gain knowledge. I had posted a reply about surgery, but not sure where it went. My dad was told his cancer at this point is incurable and that surgery is not an option due to the mets in various places. He did say that it could change to curable if the chemo works, but that the chances are not great. I did ask also if surgery or radiation would be an option if chemo worked on some of the mets and he said we would revisit that after the scan. My dad lives in a smaller center where the cancer clinic is new and this particular doctor travels there once a week and will be leaving in a month to train in California so we will be getting a new doctor then, who might have different ideas.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: new here

Postby Lee » Sun Aug 17, 2014 2:49 pm

First I want to say welcome, sorry for the reason you are here.

If you are having doubts about your Dad's Onc, sometimes getting a 2nd opinion at a major cancer treatment center is a good idea, especially when you are dealing with a stage IV diagnoses. Because of your Dad's age, I think his Onc is treating him as aggressively as he feels comfortable with. And as singing holly said, they can add other chemos later.

Best to you and your Dad and again welcome.

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 - 16 years and counting!

User avatar
raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: new here

Postby raym » Sun Aug 17, 2014 4:00 pm

The oncologist can change the dose of Irinotecan if your dad reacts too strongly to it. My major side effect from Irinotecan was diarrhea and fatigue. I was on XELIRI (Xeloda instead of 5FU the FOLF in FOLFIRI) at the end of 2012 into 2013. I managed it pretty well. This past march I was given Iriniotecan only at a much higher dose and became very dehydrated, needed IV fluids. The dose was lowered but it sill was very debilitating to me. Everyone reacts differently though. Avastin or Zaltrap can also be added but that can always be added later based on the response to the current drug combination. This past round of Irinotecan I also received Nupagen shots (day after infusion) to help keep my white cell count up. That in itself can cause some side effects.
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: new here

Postby canadiandaughter » Mon Aug 18, 2014 7:17 am

Thank you all for you input. I am heading up today to be there with them when he goes tomorrow. I feel comfortable with the doctors choice now after hearing from some of you. THis is such a scary journey when you have no idea what they are talking about and you are putting your faith in a doctor that you really don't know anything about either.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

Delinda
Posts: 402
Joined: Sat Jul 12, 2014 8:39 pm
Location: Washington state

Re: new here

Postby Delinda » Mon Aug 18, 2014 9:38 am

Good luck dear! Your parents are lucky to have such a loving daughter to help them on this journey. It's hard enough for younger, stronger folks, for older adults it's more challenging physically and the high-tech information can be difficult to grasp. I am one of the managers at a retirement community with a skilled nursing unit & see a lot of this. I suggest you speak to a social worker who specializes in senior communications if you think they would benefit. At a certain age, even bright people with no dementia struggle to understand new tech stuff, from digital washing machines to chemo plans. Glad dad is otherwise healthy, works in his favor. Come visit here often, no better people on the planet. XXOXO, Delinda
62 yo wife & mom
4/14 dx stage IIIC colon cancer
4.5cm tumor, 9/28 nodes
temp colostomy, take down 6/14
7/14 start FOLFOX, 6 mo

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: new here

Postby canadiandaughter » Mon Aug 18, 2014 9:59 am

Thank you Delinda,
My mom is actually showing signs of dementia. I am also lucky to have a sister who is helping as well and both of us work in schools so the timing for all of this was good in that we were on summer holidays. You are so right that they have trouble with all the details. Right now the meds and appts have them spinning. I made a calendar and color coded it for them so that they know what to do each day, but thankfully will be there this first session to get them started. My dad has 3 prescriptions to help with nausea, two he has to take and one that is as needed. Staff have been very helpful trying to explain things in easy terms for them. Now all we have to do is start this fight tomorrow and kick cancer where it hurts!!! At least we have the right attitude!! I truly believe that is huge in this fight. Crossing all fingers and toes that we do not have any bad effects from chemo right away! My dad is superman, never complains about anything, rarely sick and never takes pain meds. I had to force some tylenol into him the evening after his port was put in so that he would sleep better. Hoping that strength helps him rage war on this!!
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: new here

Postby canadiandaughter » Wed Aug 20, 2014 6:30 am

Well he had his first chemo yesterday and came home with his bottle for two days and so far all is good. He and my mom both seem better now that they know what to expect. We realize that each time could be different but are so thankful that he gets to ease into this. Only problem is that his blood sugar is high but we feel it's from the steroid for nausea and hoping this morning it is down. If not, we will get him into his doctor today to see what needs adjusting. We are so blessed at our clinic. Everyone we have encountered since this nightnare began has been amazing. They hire the right people!!
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

User avatar
Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: new here

Postby Frenchie's Wife » Wed Aug 20, 2014 7:10 am

I don't want to be a downer, but since your dad is almost 80 those chemo treatments will be hell. I had a similar regime way back when. I have been on this journey for almost 5 years. I have now chosen quality of life over quantity. In his heart of hearts, he may want to enjoy the time he has left instead of the nightmare that is ahead. Many people want to hang on for the sake of their loved ones. You may want to have a frank discussion with the oncologist and look at the odds. Chemo may prolong his life but at what cost? You probably did not want to hear this so early in his journey but I know you are a loving daughter and have your dad's best interest at heart. Be very sure that he really wants to do this for himself.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: new here

Postby canadiandaughter » Wed Aug 20, 2014 8:06 am

I understand what you are saying and have thought about that. Like I said this first one so far is not so bad. He meets with his oncologist next week. I'm sure if/when we get to a point where the treatments are too difficult we will have that conversation. My father is unusual. He had knee replacement surgery and 3 days later walked to his coffee hangout. He never gets sick, never takes pain meds. He is one string man. He looks more like 65 then almost 80. He does the whole neighbor hoods sidewalks all winter. Very strong and active. Even if some rounds of chemo could shrink his colon tumor that would make his quality of life better. His hope is for some results that will bring surgery back as an option. He is very positive right now so we are going with that. Maybe his second round if chemo will knock him flat and at that point we can reevaluate.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

jvaime21
Posts: 308
Joined: Sat Sep 14, 2013 5:35 am
Facebook Username: alpha21_2003

Re: new here

Postby jvaime21 » Wed Aug 20, 2014 8:47 am

Hi, 1st sorry for you to be here., and welcome to the board. According to your Dad's age its normally that your onco change his plan for treatment what worries me is the side effect of the treatment , some they experience during the treatment some are after like my husband. He got a very aggressive treatment . and during it was like nothing but after., a lot of complication that he reach to the point and now he is still in the hospital for another surgery. I'm not just trying to put you down or what., just giving you information about the side effect before and after the treatment . I can see that you and your dad had a strong spirit that's a good attitude Never Give up. Try to get 2nd opinion or 3rd opinion. Keep us posted what your Dad up to. In this board is very knowledgeable that can help you. Good luck !1

aime
wife of Stg 4 SRC
Diag.'12-2013(rd+Xeloda+oxi)
04/16/14 Clear CT-
8/25/14Kidney blockd nepro.
Rec. lung 1 enlrg. Abdomen
Inoperable/incurable /Chemo for life
11/21/14 Xeloda+Irinetocan 6x
hoping for a bright sunny day

Elvie
Posts: 32
Joined: Mon Jun 16, 2014 7:43 am

Re: new here

Postby Elvie » Wed Aug 20, 2014 6:54 pm

Hi! I read your posts with much empathy as my mom, 82 at the time, was diagnosed with stage IV CRC this past April. She just had her 83rd birthday this past week, sharing her birthdate with Napoleon which I always laughed about since she has all of her life been a very strong person, losing her loving husband when she was 62 and working until she turned 67, being very opinionated, but a tough yet loving mom and an animal lover who kept busy with gardening, caregiving to two grandchildren up until she was about 75,inspite of a disability that occurred at age at five when she was stricken with polio that greatly affect her left leg all of her life.

Since you are new to the forum with an elderly parent here is my experience in a nutshell: My mom underwent 20 sessions of aggressive radiation as well as what turned out to be two and a half weeks of a less aggressive 5FU chemo infusion (one of the 5 day regiments resulted in a dosage error that only dispensed 10% of the correct meds). Unfortunately, my mom was also showing signs of dementia recently, and I probably helped masked those symptoms as her live-in caregiver daughter. Her age and her dementia didn't make me feel any less that she deserved to be made as comfortable as possible with the stage IV diagnosis. We were told right up front that the treatment would be palliative, however, it was believed that the radiation would ease her distressful bleeding systems and frequent need to use the bathroom and perhaps allow her see her grandaughter graduate from college and her grandson graduate from high school. In that respect, she did receive relief from those symptoms of her cancer.

I turned to this forum just as you did, hoping to get any information from the wonderful members that would help me as her caregiver navigate through treatment because I found little support from the Cancer Institute where she was treated. For the majority of the responses I did receive, I found great information on the two times I sought help. However, if you look up my posts, you will see how some well-intentioned members quizzed me as to whether I wanted to prolong her suffering only to subject her to more dementia and whether keeping her alive was only for me, etc. I must say that was not the case at all! Based upon what the doctors presented to us, it was my brother's wish and mine that she at least been given the chance to alleviate the symptoms her colorectal tumor was giving her without surgery. I will also say again, there is no legal mercy killing in New Jersey, and as was suggested that I let her go still means that she would experience suffering. Cancer is horrible! Back to my mom's decision of treatment, she was very much taken about when her oncologist proposed that my mom could either participate in treatment or do nothing. We went forward with the treatment. Her treatment was completed the middle of July. I will not sugar-coat things, It was rough and my mom got to the point after treatment was over that all she did is sleep. There was no quality of life. Today my mom was admitted into a local hospital as an inpatient hospice patient in much pain inspite of the morphine that they are providing for her. I pray that her suffering is coming to an end and that God has mercy on her.

My conscious is clear in spite of what some may think. I can look myself in the mirror and say we tried, even though because of her age the treatment was not as aggressive as what would be given had she been 40 years younger. Cancer suffering is suffering no matter what the person's age is.

My thought and prayers are with you and your dad!

Also, very important: Because of my mom's diagnosis, I had a colonoscopy last month which I would probably not have had until too late, because a benign tubular adenoma was found and removed. So please, if you have done so yourself, schedule a colonoscopy!
live-in caregiver/daughter to 83 yr old mom DX 4/14
Stage IV colorectal cancer
mets to liver
palliative chemo/radiation
In-patient Hospice Care 8/20/14
Departed to greener pastures 8/28/14
At peace in heaven with my dad.


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