Just diagnosed...

If possible origin is appendix, specialist needed!

Hi, Mary.  A quick note from an 8 year survivor of metastatic mucinous adenocarcinoma of appendiceal origin, with much spread throughout the peritoneum:  if this originated in the appendix, or you have peritoneal spread from a rupture, please see an appendix or peritoneal surface malignancies specialist!  I go to Dr. Paty at Memorial Sloan Kettering.  Most oncologists, even experts, don't know this cancer ( it's too uncommon.)  It is not treated like routine colon cancer.  Get an expert involved before chemo or surgery.

You are in the whirlwind phase; life will settle down (we've all been in your shoes.)  Ask questions of us, of your drs.  Push for explanations.  If you have any questions you want to direct to me, I suggest you send a private message, as I don't get on this board as frequently as I used to.

Wishing you the best,

Alice

abrub said:

If possible origin is appendix, specialist needed!

Hi, Mary.  A quick note from an 8 year survivor of metastatic mucinous adenocarcinoma of appendiceal origin, with much spread throughout the peritoneum:  if this originated in the appendix, or you have peritoneal spread from a rupture, please see an appendix or peritoneal surface malignancies specialist!  I go to Dr. Paty at Memorial Sloan Kettering.  Most oncologists, even experts, don't know this cancer ( it's too uncommon.)  It is not treated like routine colon cancer.  Get an expert involved before chemo or surgery.

You are in the whirlwind phase; life will settle down (we've all been in your shoes.)  Ask questions of us, of your drs.  Push for explanations.  If you have any questions you want to direct to me, I suggest you send a private message, as I don't get on this board as frequently as I used to.

Wishing you the best,

Alice

Signet ring cell stage 4 colon cancer

My husband was just dx 1/29/15 with stage 4 colon cancer that started in his appendix he had right large colon removed along with 3 sections of his small bowel 7/12 lymph nodes positive poorly differentiated cells all grew on the outside of his colon the dr says it's as bad as it can possibly be but in the same breath tells him he can have him in remission by the end of the year he starts chemo Friday hus dr is using "the big guns" once a week for a year there will be four meds used how can his body handle that much chemo any help would be appreciated mona

 

Mary1864 said:

Thank you Sue.  Your words to

Thank you Sue.  Your words to so many here on this site are kind and full of wisdom.  

I have mentally been from one extreme to the other.  I should clean out my closets and prepare to not make it through this....maybe i will be given the blessing of seeing my daughter graduate high school.  All of these racings thoughts are awful to say out loud to my husband and mom.  I am just trying to go day by day for now....

Wow, I'm new here as well and

Wow, I'm new here as well and am enjoying reading all the wonderfully supportive things from everyone!

I'm a year out from my diagnosis, surgery and chemo and I really relate to your fears as I'm sure everyone here does.  I have a 15 year old son and an 18 year old daughter graduating this year.  At this point I am clear, although just had ct scan wednesday and will get results tuesday.  Your comment about cleaning out closets really hit close to me as I've thought that for the last year as well.  It's a tough ride but so far I've learned how strong I really am and how loved. 

 

Mary1864 said:

Still feels surreal

I have a friend who just lost her 13 year old daughter to glioblastoma...and it strikes me, thank god this happened to me and not my daughter.  I often think that we all have a time to begin and a time to end.  I am lucky to have had 50 yrs here, but will fight for more.  I had surgery 3 weeks ago and have a temp ileostomy, which i still hate....but am trying to deal with.   Two weeks away from chemo and i wonder if i can take it.  You are right...this is such a test of strength, and you did it!  I know for sure that when my husband said he just wants things back to normal, i told him that it wont go back to the old normal....but we can find happiness in yhe new normal, hopefully.

Just Finished My 4th Round Of Chemo

I am sorry for the loss of your friend's daughter.  It is really difficult to hear of a child having to go through this, it is so wrong and unfair.  

Surreal is still a word I use often.  Not sure which chemo you are getting, I am on FOLFOX.  It is doable.  I had a port put in, and thanks to people here, made sure to get the prescritpiton for lidocaine to put on before sessions.  The port and cream seem to make things a lot easier to deal with.  I also am lucky in that I have a pump that does not require batteries, just works on body heat it seems.  So it is quiet.

The chemo so far has been tolerable and I seem to have it pretty easy in the grand scheme of things.  The big thing is the tired building up each session for me.  I usually get hooked up on a Monday, get disconnected Weds and then the tired starts Thursday through Saturday.  I tend to push it a bit on Friday, and should just rest so it may make it a bit worse.  Basically if I just chill on the couch, wake up when I feel like it, watch some TV or listen to music or read it is not bad.  Getting up and walking around for a bit triggers it.  So basically, for me, it is just accepting being "lazy" for a couple of days  

I have the response to cold in my hand and feet, but if I keep things warm it is not bad.  Wearing slippers over socks and gloves when needed.  It is deceptive in that it may not feel too cold out, like mid 50s, but it can happen.  This is building up also like the tired, but generally managable still.  Some positioning triggers it for me (depending on how I am sitting or move). Once again, the least is when I am just chilling out and relaxing.  

Try not to worry too much about it.  My Onc explained how much it ultimately helps the prognosis down the road - cuts down recurrance by about 50%.  Though it is not something that was on my list of things to do, it has not been as bad as I expected.  

Hang in there, you will do fine.  There is a ton of support here and each time I have my doubts or worries, I look at the great people here who have walked the path before me.

Mary1864 said:

Trying

 after surgery, i felt so wiped out.  I am being told that i am impatient.  Surgeon said i am recovering perfectly.  

Only 4 weeks post op.  Felt so nervous going to onc appt.  i lost 12 pounds after surgery and have boughts of fatigue.  But they want to jump into chemo?   Am i ready?  I do want to get this done, but feel very nervous.   They told me folfox....same routine...3 days on every two weeks.   I am supposed to get my port in this week, and start chemo on the 12th...so anxious.

It Is Okay

The whole thing is draining, surreal, bizzarre, difficult to describe.  And because how surgery has progressed there is a certain deception.  My friend had a hernia surgery maybe 15 years ago, he was a wreck afterwards with the incision and pain.  Before going in for mine, I thought of that.  Compared to the hernia surgery, my surgery was a lot easier (so I think) when comparing the two - what I recall he went through and what I went through.  Techniques and procedures help with things, but the underlying surgery is much more.

 Do not have my surgical report in front of me, but it was between 25% and 30% of my large intestine which went give or take.  But though there is less obvious discomfort, there is still a ton going on inside.  There is a huge internal change in a major system.  It needs to heal and "get used to" the whole reworking.  Tired and resting is part of the healing.  Not saying that I do not get impatient; for instance not being permitted to lift more than 10 lbs for 6-8 weeks after the surgery then another 6-8 after the post placement is a drag for me.

I lost weight after surgery, dropped almost 20 lbs from the morning I checked in for surgery until the day after.  Does make you tired.  And this is just the physcial aspect of this all.  The emotional portion is going to be more draining in all likelihood.  

On the chemo side, for me, they wanted to start within a certain time frame.  They wanted to wait 4 -5 weeks after surgery, but also wanted it started not too much further out than that time frame.  Part of this was due to testing that was done and how long it remained "valid" and also that the time frame seemed to be a good one for optimal results.

To be nervous about chemo is also REAL normal.  Think back to what the words cancer and chemo meant to you before you got on the roller coaster.  A pair of demons that lurk in the shadows of everyone's mind.  And it just got dropped in your lap.  The stories, the visuals we have seen on television and movies and what we have seen, unfortunately, in real life with family and friends.  

But despite all the fears that we all have, it is doable.  I am four in and now coming out of the downtime, which seems to be 7 days for me at this point from date of hook-up.  And there is always going to be concern with each hook-up and what-ifs.  It is the nature of the beast in this all.  I get anxious for the treatments and what effects may creep up.  But doable.  The first hook-up is probably going to be where you get most anxious, it was for me.  But once the process was started, the curtain was lifted on that aspect of fear and concern.  Now it is one day at a time going through the sessions.  I have my calender marked with them all.

Hang in there, understand it is okay to be impatient and anxious and hang out here and post whenever there is a concern, question, thought, good joke, good news or anything else.

On the road to survival

It is good to hear that you are about to start the chemo.  You will love the port (once its all settled in the chest), it saves those veins and accessed properly, doesn't even hurt. Ask for a prescription for Lidocaine Gel, or have them use the spray right before they access the port. It really helps. 

It is normal to feel tired after major surgery. The body is still trying to revover.  They do like to wait about six weeks post surgery, so you're on line for that. 

You are also right to tell your husband that it will never be the same again, but it will be normal. You both have to find that 'new normal' place. Cancer will always be a part of you. Hopefully the chemo will rid you of the actual Cancer, but it will live with you in your head.

Keep visiting us and we will help you along in this journey.

Sue - Trubrit 

TrustHopeLove said:

You've given me so much hope in so few postings!

NewHere,

I am also new here. My husband was just diagnosed with stage IV (mets to liver and peritoneum). I'm the primary caregiver. He will start FOLFOX soon. The oncologists think chemo first, surgery (hopefully) later. I'm so scared.

Your posts have been refreshing to read--even though it seems totally ridiculous to say that about cancer treatment. I'll be honest. I'm really freaked out.

He's only 33 and I'm only 27. All of the doctors and nurses and social workers (the hospital system we chose assigns a social worker as part of the care team--which is amazing) are always so suprised to see us. If it's a doctor or nurse we haven't met they usually ask us if the patient is in the bathroom or something like that.

So far we've only heard bad news and talked to people who tell us to prepare for the end. So far, nobody has talked to us about fighting back and how to go about that.

Your posts have been helpful, and hopeful. Thanks!

Welcome THL

Sorry you have to be here, but this is a good board.  Tremendous amount of great people. 

Sometimes there are many things that seem ridiculous when discussing things about cancer - you will see the strange jokes, stories and people laughing.  Which can seem weird  I have a couple of friends who have been through this, and the second I became part of the club there is a certain change and not necessarily bad.  (Yes, that sound so strange indeed)  How the outlook on life and things actually can work to be a positive.  So bottom line on that, do no worry about things being off.

It is very good that you have a social worker, it is something you should make sure to use whenever you feel like it.  It is a tough time, so all the assistance and support helps.  

Your husband is young, which should be a plus.  I am a bit older (not quite two decades) but based on my general health the doctors are optimistic for me.  Until this little brouhaha, I did not take any medicine.  My oncologist said even if it progresses, no worries because of my health overall.  They will just go in and take care of it.  And it is not like they are sugar coating things along the way.  I ask the tough questions, want to know the stats and all the rest.  Of course stats vary from person to person and are even outdated a bit as each day passes in the advances in cancer treatment.  My case is IIIC and had many lymph nodes involved.  So in theory about 53% chance of 5 year survival, 60% chance of recurrance, 25%-30% chance of recurrance with chemo.  You (meaning any of us you) can dwell on those, but ultimately they should be background knowledge and not overwhelming or a daily concern.  

The course of treatment and getting answers to questions you have is the important part.

When I was diagnosed I went to two surgeons, one more as a first opinion, because I pretty much had my mind made up I was going to Sloan Kettering.  The first surgeon was a little iffy (seemed knew to this) and almost as afterthought considered a scan (PET) to see if chemo should be done before or after.  The second doctor (the one I used for surgery) immediately sent me for a scan that day to see whether chemo before was needed.  He was fairly certain that it would not be based on scans I bought in, but he wanted to make sure.

The scan came back as not needing chemo before hand, in his opinion.  The surgery report came back with clean margins around everything (good sign) and go to chemo.  (They are also monitoring other things which may be there in lungs, kidneys and liver, all too small).  I thought for sure when I had a post surgery PET scan I would be bumped to IV, but it came back still as IIIC for the time being.  And basically they all said that the course of treatment would not change regardless.

Anyway you may have picked up on discussions of ports - it is a relatively small surgery where it is put in to access the chemo.  Based on people here, and also discussions, it helps with getting chemo (no burned out veins) and also to draw blood.  Also check into the lidacaine cream (something I also found out here) to apply before the port is accessed.  Helps make it pretty much painless for the in and out of needles and chemo.

I am lucky in that the chemo pump I have works on a vaccuum and body heat, no batteries.  Based on other stories here, I lucked out.  It is quiet, no need to worry about batteries.  The biggest issue is that I do not sleep on my right side for a couple of days.  I wear the pump on the right and port is on the right.  So I just sleep on the left or my back.  

As to the chemo, it is not on my Top 10 things to do, but it is not the total horror show I envisioned.  It builds up over time, so this round (#5), I am a bit more tired for extra days.  Could be inertia a bit  But hanging on the couch and watching TV works fine.  Plus some naps.  About 7 days out of initial hook up (two week cycles) I am pretty good.  My oncologist also has me doing only 9 of the 12 sessions with the Ox due to the fact that the chances of neuorpathy increase after 9 by a lot, but the incremental part of having that for 3 more sessions in knocking out cancer is small compared to the risk of neuropathy.  He also has a couple of extra things that adds a % or two, like he wants me to have aspirin.

Talk through whatever concerns you have both here, and more importantly, with everyone involved with the treatment.  Do not let anyone dismiss the questions or concerns you or your husband may have.  There is nothing "dumb" or "stupid" or whatever other words that can be used.  I know I ask the same question a few times, sometimes with slightly different phrasing, to make sure I am understanding it and that the people are listening.  Take a notebook with your questions and answers if you like.  

As to fighting, live your lives.  You are young and have a ton of things down the road in the future to look forward to.  Want to see a movie?  Go.  Want to take a ride to look at scenary?  Go.  I am going out and shooting photos.  I love doing it. Even when I am tired (during the more tired part of the cycle) I go out and try to find a flower, a rabbit, a bird to take a photo of and work with the photos.  A couple of weeks ago I went to one of the Rangers Games and last week went out to watch the last game with some people in a bar.  (Though had to be careful with the cold drinks, just got disconnected a couple hours earlier I also was just drinking non-alchohol drinks.  Probably should have had a beer.:) )  

This week I have things to do every evening, playing it by ear.  Usually can go for a couple of hours and be fine.  Getting used to the pattern now after 5 sessions.  As mentioned, chemo and cancer were not on my Top 10 list of things to do, but so far it is more annoying than anything.  How is that for a ridiculous statement?    

There are going to be times when you and your husband may get a bit down, it is bound to happen.  I have those moments during this.  Do not dwell there.  Let it happen, then say "screw it," and move on to the good things.

Hang in there, and use this board as often as you need to.  Good news, questions, posting silly jokes, venting, whatever.  Great people here.

My thoughts and best wishes are with you and your husband.  

Hi Mary, I remember that

Hi Mary, I remember that feeling.  Terrifying is a good word.  Someone on here said these words to me and this is what helped me "cancer is not a death sentence, many people heal or live for a really long time with routine treatment".  I think we all have this 80s way of thinking where everyone dies.  I think it was PhillieG who said it and those were the best words that I ever heard.  It didn't help me that day but it helped over time.  Once treatment starts, you'll be a lot calmer because you feel like you are helping yourself.  I hope time passes quickly, it always seems to slow down when we're at our most stressed.  

Helen, mother of a 26, 17 and 16 year old and a grandbaby age 2.

2 years in and now 2 years out=)  

Really important to talk to your daughter to let her know cancer does not have to mean a death sentence and that you will do your best in treatment and recovery.  I didn't and that was disastrous, my middle one had a serious meltdown, poor kid.