Brand New Caretaker Seeking Advice

Welcome THL

Saw this post, but replied in the other thread first  Anyway, it is below and looks like some of it echos a bit of what John mentioned.  

 

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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  Of course stats vary from person to person and are even outdated a bit as each day passes in the advances in cancer treatment.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.  

now is your chance

We moved decisively enough to change the story at the start.  Immediate 1600 mg Cimetidine, megavitamin D3 (we've used up to 30,000iu before surgery), lots of coQ10, fish oil, vitamin C and vitamin K2 (45+mg menatetrenone), and others from the LEF protocol during the 4 weeks before her surgery. This destroyed a lot of tumor mass for my wife with a massive immune response and antiangiogenic molecular assualt.  Her Peritoneal implants and mesenteric fat infiltrations were wiped out before surgery. The primary shrank and  the metastatic process appears to have stopped. Since then mild chemo+cimetidine and massive, carefully selected supplements in the adjuvant treatments. 

Most importantly, we had blood tests done for CEA and CA19-9 before surgery, and after.  Tests of 25-hydroxy-Vitamin D levels, ESR, hsCRP, LDH, and AFP were good moves too.

Read about the Life Extension treatment and preparation protocols for immediate "first aid" before surgery. We did even more than LEF with inexpensive supplements like coQ10 and vit C, D3, and K2.  My wife doesn't have chemo sick or cancer debility days. You CAN radically change the mCRC picture with careful, bold moves beyond "standard", with multimodal and metronomic approaches.  Homework pays off, and multiple consultations opinions can get better offers.

 

Well you say you feel

Well you say you feel overwhelmed, which is to be expected, but it sounds like you are on top of things and handling things very well!

The first few months are really hard and especially all of the beginning appointments when you are still learning what is going on.  Yes, the tumor could be and probably is causing the feeling of constipation.  My husband had the same problem - it started after diagnosis and continued until he had a couple chemo treaments and then the issue went away.  He did chemo first, some doctors do surgery first.

If you can get in quick for another opinion before things start, it's a good idea, though I understand not wanting to delay things.

Try to keep things as normal and fun as you can.  When we were at our lowest and he had no interest in any these support sites, I printed several stories of stage 4 long term survivors.  It helped him realize things wouldn't be easy, but he wouldn't be going anywhere right away.  If you search stage 4 survivors, you will find several threads. Unfortunately some of the folks that have posted, are no longer with is.  That is the hard part of these groups.  But there are folks living with the disease, in treatment for several years, or cured by surgery, etc.

Ask any questions you have, nothing is a silly question.