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Newcomer /caregiver stage 4

sallyjoy
Posts: 102
Joined: Apr 2004

HI all.. I am new to all this so excuse me if I dont know all the lingo yet. Mynhusbadn age 41, was recently diagnosed with stage 4 colon cancer, 4 of 7 nosdes involved, with one met to the liver. He has had colon resected and is doing pretty well so far. We go tomorrow for a PET scan and friday for consult for mediport placement for chemo. He will be gwetting FOLFOX & Avistan. Any survivors of this type out there. any advise wpould be appreciated as I am learning quickly to not rely on the doctors to tell us what we need to do and when. Hubby was misdiagnosed for over a year... has Rhuematoid arthritis and kept complaining of stomach pain...no bleeding... they just kept changing his meds even though they knew his father has colon cancer - diagnosed at age 58 in 94 returned with mets to liver lung and pancreas in 2002... ER docs kept trying to send hubbby home... said he had diverticulitis... so i kept feeding him high fiber which almost completely blocked him up. Days after being admitted (we actually had to refuse to leave the 2nd time i took him to the ER) they were still telling us it was irritable bowel even though he complained of narrowed stools... FINALLY they do a sigmoidoscopy??? (sp?) and run smack into a tumor with only enough room around ti to let fluid through. We still eed a complete colonoscopy done but don't know when to do that??? His surgery for resection was Mar. 3 All this came as such a shock - I have been online since diagnosis trying to absorb as much info and survival stories as I can... Hubby does not like to be informed - it freaks him out so I don't really have to many people who I can talk to. friends and family only know so much or only understand so much, plus it make some people uncomfortable. I don't know how to talk to my hubby about prognosis without scaring him... I am doing all scheduling for surgeon/oncology/followups, etc. plus working around all these appointments. we have 2 kids at home age 5 and 15. WE share the 5 year old, other son is his... his mother has been trying to getnhim to come live with her so she won't have to pay support so we have custody worries coming... 5 year old needs a physical for dental surgery next month... it's very overwhelming.. Hubby's boss htreatens to take away our fam. med. coverage... HUbby is a roofer and the %FU says to stay out of the sun...
THERE I VENTED ... ANY INFO GREATLY APPRECIATED AND GOD BLESS EVERYONE OF YOU :)

estherw40
Posts: 1
Joined: Apr 2003

Hi, Sally just want to say, how sorry I feel for you and your family. My husband had stage 3 colon cancer last year.He is in remmission now. Thank God. It is so hard and my husband freaked all the time. He was always a strong man that never cried after being diagnosed he cried all the time he was 46 last year. They said he had it four years and we never knew. But he would never say when he did not feel well. I know this is tough on you and wish I could tell you it will be ok, but it is a rough journy. I can tell you I found strength, I never knew I had. Also pray everynight and day. It really helps. If you can try to talk to your husband and kids, always be open and discuss all your feelings, even if you cry together.My husband did chemo for 11 months he was tired but did ok, he had rad for 28 treatments. Ask questions all the time, even if you think they are dumb. There is a cea test for colon cancer it tell you if it is getting better worse they do it quite a bet the higher the number the worse it is getting if it gets lower you are doing better, ask what these numbers are. I don't what else to say. Just ask everyone questions and the chat line is a great way to cope, you can talk to people that have been through this. You can go on at night when the husband and kids are in bed. It saved me from being a total wreck at times. You can cry and laugh and have questions answered. I feel for you and hope the best.

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Sally,

I was also stage 4. Diagnosed in Oct 2001, when I was 33. Today I am fine. Mine was also liver mets. Sounds like you have so many things going on at once, but you know what your first priority is right now...get hubby better. Everything else will work itself out in due time. One thing he may want to mention to his boss is that discrimination against a person could have legal repercussions...food for thought.

Yes, he does need to stay out of the sun. He'll be at a point where he could simply look at a picture of the sun, and get sunburned! Drink plenty of water prior and after chemo. I am wondering how his job may be affected though since it is very strenuous, and chemo could slow him down a tad.

Come here as often as you need to...education and strength are very powerful.

Stacy

sallyjoy
Posts: 102
Joined: Apr 2004

Stacy, Just wondering... what happened to the liver mets. Are they gone? did you have surgery to remove them? And what was radiation like? Not one doctor has spoken of radition with us...I wonder why?

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Sally...

The doctor removed 40% of my liver, and that took away all the cancer. I only had radiation on the original colon tumor, and none on the liver. The treatment after the surgery was chemo only, to abolish any microscopic little nippers. All clear for going on 3 yrs now.

Let me know if I can help more...

Stacy

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hello! I was Stage III w/ 4 lymph nodes involved, same as your husband except I did not get my met to the liver until a year later......that was one year ago. I was wondering why they are not operating on your husband to remove the liver met. Especially since there is only one.......Are they planning on doing that after the chemo? That is a question to ask if you do not already know. Also, I just wanted to tell you that I have a very physically demanding job (forest ranger) and I continued to work. I think it helped me tremendously. I probably would have gone bonkers if I would have stayed at home fretting. Also, I think physical exercise helps w/ the tolerance of chemo. I did not find the 5-FU to cause me to get sunburned like they said. He should watch it at first, but it may not happen. The second time I had chemo I did not worry about it at all. I did, however, find myself getting dehydrated very easily which caused me to get dizzy. He really needs to pound the water (at least 2 quarts/day). I never did Oxaliplatin or Avastin (it did not exist), so I cannot help you there. But I have had no evidence of disease since August, so I hope that makes you feel a little better.
Good luck to you! -Susan

KrisS
Posts: 232
Joined: Apr 2003

Golly you have a full plate! I am so sorry to hear your story. I am stage 4, but with metastasis to distant lymph nodes as well as liver. I am also wondering about surgery to resect the liver met. It is my impression that patients with only a few liver mets have a chance to do quite well, as Stacy reported. I met a lady shortly after my diagnosis who was doing just fine 10 years after surgical resection of her colon cancer and liver mets, following 5-FU and leucovorin.

I know that most roofing companies are small businesses, but if they have more than 50 people on payroll, your husband would be eligible for COBRA coverage. You have to pay the cost of the insurance but it is at group rate and he cannot be turned down. I would contact a social worker at the hospital or oncologists office. They often have information about methods to get some sort of coverage assured. They also often have suggestions for helping your children deal with this.

My thoughts and prayers are with you and your family. I hope treatment goes smoothly.

Kris

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

There is not alot I can add to the above...wonderful words of encouragement! Just to add my support. My husband has Stage 111 and has just completed 8 months of chemo and 25 sessions of radiotherapy. We now wait to get a scan to see if it has worked and this is a scary time! It makes me so angry to hear how long some people have to wait to be diagnosed.

I know how you feel about the change that comes over some cancer patients...my husband too has become so emotionally fragile and I have had to remain so strong to deal with, not only the illness and all that entails, but the other aspects of our life. And I do not always feel strong! I am so afraid that the cancer has either spread during treatment or will spread at some point after.

I agree that you should try and concentrate on your husband's recovery though I know it is hard not to worry about other issues. Money is often one of the main concerns.

Keep visiting here....it helps so much!

Best

Alison

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

I will keep you and your husband in my prayers. He has a rough year ahead of him, and he will need alot of support. I was diagnosed in March 2003 with stage 3 rectal cancer. I had the year from hell and thought I would never get better. but I did. When you go to the doctors bring a list of questions with you, then you won't forget anything. I am new to this site, but it is helpful because many have been there. Web MD also has a good site.

sallyjoy
Posts: 102
Joined: Apr 2004

Thanks guys& gals for all your thoughful relys! We are just about to leave for the PET at Hopkins in MD, so I will be brief... Hubby's CEA was 2.1pre-op for the colon resection mar. 3, last week it was 7.8... As for liver resection...he is having that done after a few round of chemo... the met is in the caduate lobe and they would have to remove 1/2 the lliver so they are hoping chemo will shrink it and let them take out less of the liver... so he's looking at chemo...then surgery...then more chemo.... As for his work I guess will cross that bridge when we come to it. Finances are a real bummer...w ehave no savings. Our church and family are helping us as I only work part time. Our tax returns helped a little. Hubby doesn't want to disability unless we lose our coverage and then I guess I'fd get coverage for our kids under CHIP ( a program for kids health insurance for financially burdened families.) We just don't want to do anything until it's necessary cause current coverage is pretty good for a PPO. Only $5oo deductible which has already been met this year... Thanks all for your advice and prayers. I will probably check back with you all tonite. It is GREAT to have answers and someone to vent to. One question for today - how long till we get PET scan results....
Thanks a bunch!

mikew42
Posts: 113
Joined: Mar 2004

Sally.. wow, your husbands story is so similar to mine. I am also fairly new here to this group. I was thought to have early stages of cc, but during the surgery in late February they found 2 mets to the liver (one was ressected for biopsy) and 8 of 25 nodes positive. I am 41 and have 3 boys (5,9,10). Needless to say I was devestated, but my wonderful wife and encouraging mother brought me around to fight this demon. I also needed to find survivor stories that could give me hope. I read the stories in the personal web pages on this site as well as the Colon Cancer Alliance webpage (go to patient support, personal stories) and you will find 6 or 7 stories similar to ours (Stage 4). I just started chemo 3 weeks ago (3 weeks on, 1 week off) and so far so good, no real side effects. I am on the 5FU, Camptosar and Avastin. The remaining met on the liver can be removed, however we are leaving it in for now to see if the txt's are working. Take the advice of this group and drink plenty of water before and after chemo, excersice and try to stay positive. My surgical oncologist said that if the liver met is ressectable, there is about a 25-50% chance of non-reccurance (cure!). Take care and keep us posted. Mike

sallyjoy
Posts: 102
Joined: Apr 2004

WOW you people are wonderful... It is good to finally be able to have real conversations with people who understand what we are going through. This reply is to you all... We will get the results of the PET scan tomorrow - boy that's pretty quick. I'm hoping for the best. Most times I do pretty good about being optimistic, when i get overtired or overwhelmed I don't do so good. get all weepy and usually i take a bath so I can cry it all out...then i get back to the business of being positive. WE do have a very strong faith. I happen to believe nothing happens by accident and that there are blessings in every situation we must face. My hubby and I almost split 2 years ago during a depressive time he went through. And we DID get through it and our marriage is stronger and more loving than i ever thought it could be! We go to support groups as often as we can and follow a 12 step program. We also have many wonderful friends at church and of course family. I am currently in counseling for panick attacks I had prior to hubbys diagnosis... funny thing those attacks. Fam. DR. kept putting me on anti depressants and I kept insisting i wasn't depressed - in fact the meds made me freak out and gave me insomnia. after stopping them and getting into counseling they stoppped altogether... then all this stuff happens and if they thought i was stressed and depressed then... well llet me tell you - thru-out all this cancer stuff and custody issues, etc. i haven't had a single panic attack.. go figure. I think God was setting me up so I have all the anti-stress coping strategies that I need right now. My counselor is a Godsend...literally :) I do visualization and pray every day. God has not let me down yet and I hold onto that as much as I can. I visualize about speaking out to people who are going through similar situations and I visualize giving testimony about he miracle we are praying for. God brought me here to these pages for reason... ya know and I thank Him for that... I will keep all of you in my prayers and thank you for yours... I do however have moments of weakness and fear, but like some of you have mentioned I know I have to take care of ME in order to take care of hubby and family so I do try to fit in vent time or prayer time or fun time, etc. We do need to laugh :) I will keep you updated as we hear more and I'd really like to hear from you all too... your stories give me hope :) And i have read the other sites survivor stories...over and over... I just wish there were more of them...that is how i came to this place - searching for more personal stories. I like that these are here and now stories and here and now people...some stories end and you just have to wonder if the people are still around. I had tried to contact one guy, but his story was from 4 yrs. ago and my emails keep coming back... so I just pray he changed his email address... well, i gotta go for tonight.. I am tired and rambling a little... God bless and keep Each of you and thanks for being here for me... Talk soon... Sally :)

sallyjoy
Posts: 102
Joined: Apr 2004

UPDATE!!!!
We just got word that NO OTHER CANCER WAS FOUND besides the one met to the liver :) I was so worried that there might be more than they first thoought. It is weird to be happy when he does still show a met, but I am :) We go later today to find out when they'll put the port in and start chemo a week after that...

bsrules
Posts: 296
Joined: Mar 2004

Hello There!! Welcome!!! I am also a caregiver. My husband was diagnoised in Sept. 2003. I also felt so overwhelmed as you. To this day I don't know how I got through everything but I did. Things do settle down once you get a routine. Between all the tests and the treatments. Try to talk to your husband about what is happening. Mine didn't want to know also but it is important for him to know what is happening. I took everything one day at a time. I try not to worry about what hasn't happened and concentrate on what is happening now and in the near future. I know it is really hard to do but that is how I got through each step. My husband is self employed and when he was able to get back to work even if it was for a couple of hours that was the BEST medicine for him. I was very worried but that is what he needed as I couldn't keep him from doing what he needed to do. They only gave him 6 months and we are on our 7th and he is feeling much better and happier then he has been in such a long time. He also loves to work outside and he hasn't had any trouble with the sun. I make him use sunscrean on days when the sun is strong just in case. His treatments are 5fu and luca. and oxiplatin. He has CT Scan after every 4 treatments and it took 8 to finally get good new that the cancer in his liver which is 60% involved to finally start to work. So things are finally looking up. Just remember that he is your #1 priority!! Try to laugh and smile even at the little things it does help!!! My prayers are with you and your family!!! Good Luck and don't forget you have alot of friends here!!!! Let us know how you are making out!!!! Sue

pjenks57's picture
pjenks57
Posts: 112
Joined: Nov 2003

Welcome to this message board. You have found a wonderful place. All of these stories sound like I am reading about my family. My hubby was dx with cc in Sept 2003. He began bleeding and was rushed to the ER. They did colonoscopy and found the mass. Surgery was that Sunday and 14" of colon removed, 6 of 14 nodes positive. met to liver and lung. Surgeon said liver was so bad that he couldn't do anything about it. I was DEVISTATED! I am the strong one and was a puddle in the floor! BUT I am back. You will find that strong will be your middle name. You WILL be able to do it even if you don't know how. Hubby's Mother died Oct 5, 2003 and my Mom died Dec 5, 2003 and we still hung right in there. His Chemo began Oct 21/ (Day after our Daughter's 8th birthday). He did Oxilaplatin and Xeloda. Had a bit of a rough time but IT WORKED.. So far so good his CEA level went from 369 pre=chemo to 39 now and he is still doing the Xeloda. The liver met went from 5cm to 1.5 with 6 treatments. It is wonderful what meds can do.
There is lots of panic, hope, frustration and fear but you can survive. Please don't do what I do and forget about yourself. You have to stay up and going. Take care of your hubby, family and mostly take care of YOU... My hubby like your's doesn't like to learn about this stuff much and isn't computer literate AT ALL! So I learn and kinda keep it to myself. Oh, he also has Congestive Heart Failure that we medicate and live with too. He had open heart surgery 2 years ago next week. Geeze we have been thru it but here we are happy as if we had good sense.
As for him and working, he owns his own business and I work with him. Well now he is retired (he's 59) and I am running the business. And doing a pretty darn good job too!
I am sorry to ramble and ramble but you will find that this is the place to do just that. Hang in there. Pray. Smile. and Take care of YOU!

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Sally--hey--all of the above sweetie--these guys here are just great.
Be there for him Sally--just take care of yourself too--it's gunna get rough but am sure you can handle it.We all understand.Time will pass and routines will evolve so that you can sort thru this mess and still be able to cope.My soulmate has been my wife, Jen and in time she learnt how to deal with my feelings.Aproach any discussion with care girl but talking and understanding is good medicine.Your family and friends need to be able to understand to--even though uncomfortable for some of them they need to realise that us cancer sufferers have a need to be able to talk about our disease--not for sympathy--but for support and understanding.
Our luv,huggs n rainbows coming to you both--kanga n Jen

steved
Posts: 836
Joined: Apr 2004

I'm new to this as well with my diagnosis only 6 weeks ago. Being only 31 and having our first baby on the way it has hit hard and we have really been through the mill over the last month but believe me it does improve with time. Your husband is undoubtably going through all the emotions and one of the most common strategies (and one I still use when I need to) is to hide from the information and the truth of how crap the situation is. His not wanting to know or talk too much about it is not uncommon and needs to be respected. be gentle in encouraging to talk about and avoid any confrontation about it at this early stage. In time talking about it will be really important in getting you both to the stage the of accepting it and being able to look forward in life again but it takes time.
For your own sanity do use any other channels you can find to vent your emotions this site included. You will be angry and will direct that in all sorts of ways including to health professionals, yourself, your family etc. Do try and get rid of the anger though, as if you bottle it up it will eat at you. Look after yourself and allow yourself times to be something other than your husband's carer and organiser of appointments. Yes he is the priority at the moment but you can best help him by also looking after yourself.
Do feel free to email people on this site (myself included) if you think more personal rants would be therapeutic- they certainly have for me!
I'm on continuous 5FU at the moment and no problems with sensitivity to the sun but then I do live in the UK- finally there is a benefit from these eternally grey skies we have!
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