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Update on Dick

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

You are wonderful in your love and support. After getting that very hard news last Thursday we are settling in for a plan. I can't believe how absolutely shocking it is to hear that the cancer is back. Those first days were so hard.
We met with the oncologist here yesterday and spoke to Dr. Lenz. Both agree that Dick should start on Erbitux next week. We are not yet sure what drug he will be taking with it. What have others done? CPT-11? 5 FU? Please let us know.
We hope that Erbitux is effective and will stop growth for awhile or for a very long time (like our friend Phil).
We have some clarification on the spread. Small nodes in the lungs and lymph node spread. It looks like the mass they saw is a lymphocele, it did not light up on the PET. We are relieved about that.
We will let you know when we have a plan finalized. We are Fed Exing the PET and CAT disks to doctor Lenz as he wants the radiologist at USC to see them.
I am so sorry my dear husband has to go back on chemo but so happy to have hope.
Thank you for your prayers.

Aloha,
Kathleen

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I never did erbitux; so I can't help you with that.
All I can offer is sparks and loads of good vibes and hope.
Stay strong and focussed.
Roger

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

Well, now that the news has sunk in, a plan of action seems to be in place, the only thing I can offer is my very best wishes.

Phil can help you with the Erbitux and the rash. The only thing I have heard is to try and get on top of it even before it starts. Good news is that if you get the rash, drug is working.

As far as CPT-11, that is what George is on now. Diarrhea, not bad for George, no urgency, an Immodium AD takes care of it and he only had to use one and it was after infusion and the next day 1. Manufacturer says take 2, but George found that to be too much. Hair loss and fatigue, fatigue, fatigue.

Take care and best wishes - Tina

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Tina,

I know you've mentioned George's side affects with the CPT-11 and I'm glad to hear that an immodium does the trick for the diarrhea... but a question about the fatigue. When you say "fatigue, fatigue, fatigue", do you mean he's fatigued 24/7 all the time... or just a couple of days during each cycle?

I can't remember what cycle he's on. I'll be getting a 90 minute infusion every 3 weeks.... is that what he's doing too?

Thanks!

Cheryl

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I am glad to hear that you guys are settling into working the plan out with the doctors and that Dr. Lenz will be looking at the scans. I wish the very best for you!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Awright... now we are talking! A plan! Everyone needs a plan to chase away the fear. As long as there is a plan in place, then you know everyone is working on your team and the battle continues... just with new arsenal!!

I can't help you with the Erbitux question... that is the next chemo I will be going on if the CPT-11 doesn't do it's thing and work for me. So I will be interested in following how/what it does for Dick. And yes, Phil will be an excellent resource for you two because he has been on it for a long time and it seems to be working well for him.

I'm so glad the "mass" is nothing to worry about. Now it is the small nodes in lungs and lymph nodes. My guess is the Erbitux will kicked those nodes in the "you-know-where" ;)

I'm thinking of you two all the time!!

Cheryl

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Keeping you both in my prayers!

Dutch hugs, Kathi

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

I'm so glad to hear that the doctor will be able to prescribe Erbitux. Hey, if works great for Phil, there's simply no reason why it can't work great for Dick too! Right? My thoughts and prayers are with you both. Hugs! Cynthia

ForBenandSophia
Posts: 11
Joined: Nov 2010

Hi Cynthia,

What does Rick take again for the rash ? Erin

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks for the update. I want to wish Dick well with the Erbitux. I may be on that in a few months also.

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Sounds like you're getting your legs back under you. I'll keep praying for you and your family Kathleen.
(Hugs)
April

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Kathleen.

I've been thinking about you and Dick a lot the past few days. I mentioned your situation to my circle from church on Tuesday and put you on our prayer list. It's so good to hear that you're settling in with the news and getting some news that is a bit better.

Please tell Dick to hang in there. We're with y'all all the way!

*hugs*
Gail

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

That some very good things are going to come out of this.....don't ask me why, I just got a funny feeling that all will be ok......lets go with that and see just how good my gut feeling is........Love to all 4 of you........Buzz

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Kathleen, think about you guys often, so hard to have to go through chemo again. wish you guys lots of strength to get through this battle.... HUGS. petrina

mom_2_3
Posts: 965
Joined: Nov 2008

I am so relieved that the one mass is nothing to worry about. Erbitux will knock those other tiny things out! Keeping you and your family in my prayers.

Amy

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

thank you for sharing the plan! You have been on my heart since you posted the results. You will be stronger then you ever thought you could be or would have to be, but you will do it.
I will continue to pray for you. Best to you. Jean

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

thank you for sharing the plan! You have been on my heart since you posted the results. You will be stronger then you ever thought you could be or would have to be, but you will do it.
I will continue to pray for you. Best to you. Jean

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Kathleen,

Your last words say it all "...I'm so happy to have hope". You and Dick DO have hope and that cannot be taken away! You're going to get through this-
Thinking of and praying for your family-

Lisa

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Really glad your making progress fast.

I told my onc Dicks story last Monday as it kind of rocked me personally.

My onc said " don't worry that far in the future, lets get through the next chemo cycle"

so thats what we talked about.

Our situations are similar ie Dad with bowel cancer, wife and two kids.

I felt like I was looking at my future when I read your post.

My prayers are with you.

Pete

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Dear Kathleen,
I only just learned of Dick's recent scan and the ensuing bad news. My heart sank to read it. I'm glad however for the good news about the mass not lighting up and I like Buzzard's sense of something good coming of this. I'll focus on that as well and continue to send you light and love. I know I'm not all that close to USC, but if there's anything I can do from this end, please let me know. Maybe I can even drive down.
with love and gratitude,
Adrian

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Kathleen Darlin and Dick,

I am with Buzz on this one. Call it an old mans intuition or what. I am older then Buzz, therefore mine has to be better then his. Yes, I also have a gut feel that Dick is going to be just fine. You both have a damn good attitude. Stick with it. The power of positive thinking always does better with any problem.

Kerry (old intuitive SOB)

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Kerry, I fished in the Red Sea with Moses just prior to watching him part it....Now, Young man, just how old are you ?

:)

OH. BTW...Hi Kat and Dick.......

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

now boys no arguing over age.....pretty sure I can beat both of you....haha

Hi Kathleen and Dick....gosh you two.....I so wish you did not have to do this again but you do....I have a feeling this chemo is going to kick a--.....cancer a-- that is not yours

hugs, mags

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

Hubby was on Erbitux and Xeloda. One thing about the Erbitux, you need to stay ahead of the rash. We didn't really understand what it would be like and he ended up getting it in his eyes. Dr prescribed doxycycline and it cleared it right up. Still small acne like rash on his face but nothing like the first couple of treatments. If you can get the meds prescribed before he starts the treatment most likely the rash will me minimal.

Has he already had the KRAS testing? It only works for KRAS wild type and not the mutation. After 2 treatments his CEA went from 79 to 1.3!

Lot's of Luck

Kathy

Erinb
Posts: 295
Joined: Apr 2010

Kathy, I am glad you have a plan. Options are always good. I can remember how devastated I was to learn that Chris only had three months off of chemo after his resection and ablation. I thought it might come back, but never thought so soon.

Anyhow after the recurrance in April he was put on FOLFIRI & ERBITUX. This made him tired for three days. The pump was exhausting. Then in September he put my husband on Erbitux, CPT 11 and Avastin. This mix doesn't make him as tired as the 5fu, but the rash is awful and his toe gets infected. Oh yeah, diarhea/constipation and dry skin too. CPT 11 caused him to experience hair loss, and Avastin gives him occasional runny noses and his last two CEAs aren't down to normal yet, but he has had some set backs with the toe infections and has had to take some breaks. But his scans have looked pretty good so far. Stable...and that's good.

My husband is amazing. He continues to work one full time job (teaching) and he also coaches, runs consessions, and is in charge of the park during the summer. On top of that he is an excellent father. Four jobs and he is still going & doesn't want to give anything up. Trust me, I would love him to quit some of the part time ones, but if they make him happy that is what he should do.

I hope the Erbitux works well for your husband.
Erin

AnneCan
Posts: 3692
Joined: Oct 2009

I can't believe how much your husband is able to work! Good for him; I am glad he feels so well.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Erin,
Your husband's story is encouraging. Thank you for sharing it.
We are settling in to the idea of chemo again. We think Dick will start chemo next week. We probably won't find out the mix until Monday. I'll keep you all posted.

Aloha,
Kathleen

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

thank you for keeping us posted.. i am glad there is a plan in motion now its just time to get back to the NED side! You both are such an encouragement to me and I am sending all the good vibes and prayers I can your way!

Loves,
Mel

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Kathy,
Thank you so much for this info. We will get him on the antibiotics before Erbitux.

Aloha,
Kathleen

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Thank you everyone.

I just love reading your posts. They breathe new life and hope into me. Kerry and Buzz, I am going with your hunches. Dick is going to be able to do this.
We hope to have good weekend before the chemo starts. Still waiting to hear what the cocktail (to to speak) will be.
Neighbors and folks at work have heard the news and are rallying. Right now we are pretty much asking for prayers.

Aloha,
Kathleen

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Glad to hear of the plan. I'm still sending good vibes and prayers your way. I've heard so many good things about Dr. Lenz. :) Love to you both!!

hopeforcure49's picture
hopeforcure49
Posts: 111
Joined: Jan 2011

If you have a plan you have a score to settle. SO GO GET EM! I'm on Erbitux, the rash is the part I don't care for. My scalp itches, but head and shoulders shampoo helps. and aveeno bath powder I mix with a little water, make a mudd and apply on scalp after shampoo, leave on for 2-3 minutes and then rinse. I did grow some facial hair, then it fell off when I had a break of chemo. and my eyelashes grew very long and curly.....LOL! so my kids call me betty boop. Good Luck.. Blessings from Lourdes

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Hopefor!

I just learned something at the Look Good, Feel Better workshop I attended last week. I haven't started new regime of chemo yet and so far, Erbitux is not going to be what I'm taking this time. BUT, they mentioned some chemos cause a very itchy scalp... and something that has proven to relieve the itch is to bathe your head with Apple Cider Vinegar. I take it they mean a sponge bath where you apply the vinegar to your head with a soft washcloth. I had never heard that one before and I thought I might also try that with my hands. I tend to get itchy hands :D

Cheryl

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

I am collecting all the tips on this rash that will most likely appear. We will be well armed.

Thanks!

Aloha,
Kathleen

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

I've not taken that chemo but hoping that it works for him. So sorry to hear that it is back. It seems that he has been doing so good. Glad that you are getting a second opinion too. You both are in my prayers daily.

Kim

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Hey Kathleen and Dick, I haven't been on for a long time and just saw this post. So sorry to hear about the spread. I am glad you have a plan and it sounds good. Don't give up hope.
Thinking of you both and all of the good people on the board. Paula

coloCan
Posts: 1956
Joined: Oct 2009

you'll both safely fly thru any turbulance you encounter......

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