mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Guinevere]

Des, As tough as Xeloda is, it's a good thing that she can be on chemo because it does give her a fighting chance. If that quits working, they can try Irinotecan combined with either 5fu or combined with Erbitux or Vectibix. If those quit working, there's Stivarga. It's a new chemo and some have had good results with it. Frankly, some don't, me included and it's a toughie for sure. I'm glad she has Dilaudid for pain. Just make sure she or you write down when she takes it to avoid accidental overdosing. VOE...
You might get more concrete answers out on the board where those who don't come to this thread that often might have ideas that would sound doable for your wife and you. I'm so sorry that your family is going through this. It's hard enough when your kids are grown. I would hate to have young children added into the mix.

God bless ~
Gwen

[jeanette57]

hi dez

I would make this time about your daughter. Write letters - video clips and etc. I think in the long run it will help. I have written letters and such - I was looking at some pjs and tried to talk my family go to buy them for Xmas present (sister in law). I am looking at the future what ever time is given.

[jeanette57]

Hi Group

wow factor. I am growing girlie peach fuzz and guess the color. BLACK - wow I am so surprised as I have been a dish wash brownish blonde for 50 years. Now it looks so black but feels so soft - wow I am petting myself all day. feels so good.

I am bloated bad - each leg is swollen but the left lung is full- so up my water pill and that means LOTS of bathroom breaks. 8 between 1am and 8 ish. so blessed hospital bed comes up fined and I am on oxygen all the time now

guess it is time to sleep. hugs to all of you

[Bev G]

Dear Jeanette,

Hoping you have a good day and the Lasix moves that fluid out of your legs and lungs. Enjoy the peach fuzz!

Love,

Bev

[jeanette57]

thanks Bev

peach fuzz sure is exciting - scared myself walking into the bathroom. Not use to seeing dark peach fuzz. thought for a second it was a man with face fuzz. not happy for one second - then joy it was me!

today will try to get house worker to drive me to funeral home. that way family not involved and I can pay for the cremation etc. If I mention it to family they freak out way to much. Me - just want the details all ironed out. Not an emotional issue after 2 years of stage 4.

[Sharona]

Jeanette,
So excited about the peach fuzz! Mine, too, has come in black and very fine, which the onc told me was unusual. Many, many years ago, before I began frosting or highlighting, it was a dishwater blond.
Thinking of you as you take care of business. I set up and paid for my cremation in May.
Even though it was not an emotional experience, it was a jolt of reality.
Praying that you find some relief from the fluid retention.

Des,
Welcome! As Skypup said, this disease is unpredictable. My prognosis was quite bad and the doctors are quite surprised that I am still here, much less doing all that I am able to do. Each person is individual, even with similar diagnosis as someone else. My prayers are with both of you as you travel this journey.

Hugs to all,
Sharon

[jeanette57]

thanks - yahoo for timelines - I did not get to funeral home - got behind on laundry so she worked that plus dishes. I have to let her go but she loves my dog and is so nice to me. She over looks anything (even stands on trash). I am going to tell her Thursday 20 an hour is ok but if it goes up then will not have her (cleaner). Just today cleaned one part of stove (one burner - left the one behind it - dirty).

[jeanette57]

oophs - talking about cleaning lady - so missed my funeral home stuff. I will get to it!

just watched Hemlock Grove on Netflix - wow interesting monsters got cancer - but cured self! scary


glad I have my dog! some one to talk to when night comes. hugs to all. George said "hi" loud and clear - yahoo

[Guinevere]

I'll edit this later to include remarks on everyone but I wanted to post this while I was still sitting up at the computer. The Princess is 6 months old today! Can ya believe it??!! Anyhoo, here's a pic Gary took of her this afternoon.



I'll be back in a few. I just have to lay down and post from my Kindle.

God bless ~
Gwen

Okay...I'm laying down now. It seems that I've developed a new pain in my right side. It doesn't seem to be an obstruction. When it started, it kind of felt like a mild stitch in my side. The longer I was up, the more it hurt. I told DH that it's probably nothing but the fact my liver's crammed full of tumors.

Jeanette, I think we need another pic! I know what you mean about scaring yourself when you pass a mirror. That happened to me when I had lost 50 pounds because of the cancer. I scared myself all the time! Like Sharona, I hope the fluid in your legs go down.

Well, I'll close for now. If my pain meds keep me up, I maybe back later. God bless ~

[mdezdez]

hi dez

I would make this time about your daughter. Write letters - video clips and etc. I think in the long run it will help. I have written letters and such - I was looking at some pjs and tried to talk my family go to buy them for Xmas present (sister in law). I am looking at the future what ever time is given.

I have not had the discussion with my wife yet. I think she should do it, but she keeps saying that she can't let herself think that she won't be cured and be around for 20 years to see our daughter grow up. I understand not wanting to give up, and I don't want her to give up either. She needs me to believe and support her as well, and I try really hard to believe, but it's really hard when she is in pain.

I'm planning on talking with her about it from the point of view that doing letters or videos for our daughter now, while she has energy, would be better than if she gets really sick and does not feel well. I drew up a list of life events and think that every one that our daughter reaches and my wife is still around, we have a little party to delete/burn the letter/video because its not needed.

Just looking for the right time and right mood when we can talk about it.

Dez

[jeanette57]

Dez

Cancer sucks! Time and knowing is not the same for all. My neighbor got one week from colon test! She had a 12 year old = who never got a chance to say goodbye. Kid was blown to wind - no good byes.

find someone at cancer center or such that has kids. Let them guide you and maybe wife. I have heard in the bay about some lady fighting 10 years because her son would go to foster care. Then at 18 asked him if it was ok to go - he cried and said no as he go a girl in trouble and she would have an abortion if he didn't take the kid. Yicks she is fighting through more years.

There is a blog somewhere when a caregiver just at last minute got recording of voice on phone. crazy- cancer sucks and you are the one - yup YOU need to get it together for yourself you wife and you. Oh if child school has counselor - call and have talk to them - beg they have the experience.

-------------------------
Gwen - hope the pain meds are working - hugs to all.

[Guinevere]

Dez, I think Jeanette had a good idea about contacting the school counselor. They might have ideas about what might be the best way to help your daughter cope with the illness now and what's to come later. I had a friend who bought presents for the special days in her daughters' lives as well as writing notes and I think she even made a video. I think they meant a lot to the girls as time went on. BUTT, I've read about other children that felt as time went by, that is just a reminder that their mom was, once again, not there for a milestone. You and your wife know your daughter best and how that might affect her.

Every day I pray - believing that I can be cured if that's the Lord's will but I realize that He might have a different plan. Even so, there are things I feel I need to do for my son's and granddaughters. I just haven't felt up to doing them but am hopeful that the fatigue will get better. If it's not better tomorrow, I'm calling my onc (who's also acting as my GP).

God bless ~
Gwen

I was up or awake most of the night because Tramadol gives me insomnia. The pain is still there but I'm trying Flexeril today to see if that helps. So far, it feels the same as yesterday.

[skypup]

Gwen, have you tried oxycodone? It does a good job on the pain for me, plus I sleep like a baby...

[jeanette57]

I am tired also - must be the day! I am also moody with mom - got mad at her! I pay for a house cleaner and mom picks on me - "she missed this -- she missed etc- all negative - then she gets mad when I tell people she is a horder"""I can no longer go to her house. It is unsafe for me. the bitch is back (me).

just got letter from social security- said they pay 1500 funeral expense??? does that mean cremation???
called the funeral home but director was out. so made some soup and going back to sleep-

Jeanette

[Bev G]

Hi Jeanette, as far as I've heard, Social Security pays a grand total of $255 towards "final expenses". Absurd!!!

Hugs to you,

Bev