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An Update on Jerri

JKendall
Posts: 186
Joined: Nov 2004

Jeez, does this out-of-control roller coaster ride ever slow down????

Jerri is now 7 1/2 weeks past her surgery (removed a foot of lower part of colon; complete hysterectomy; a soccer-ball-size tumor on each ovary--one had ruptured before surgery; removed lymph nodes closest to the colon that tested positive; the doctors felt good that they had removed all visible cancer) and is healing quite well. She lost 40 pounds, but is now maintaining a steady weight. fatigues VERY easily and has a lot of achiness.

She was supposed to start chemo (5FU; luekovorin and irinitecan (sorry about the spellings) on Dec 3rd. When we showed up (after a horrible weekend of anxiety and nervous anticipation), we had questions we wanted answered before the chemo was plugged in. Good thing Jerri insisted on asking the dr her questions first!!! Since the CT and pet scans came back clear, and the colonoscopy was clear, Jerri and I thought maybe the chemo could be scaled back to a milder dose.

The answer we got really set us back. Turns out the chemo doctor had not yet seen the results of the pet scan or the colonoscopy. After she reviewed the results and consulted with a radiation onc, she informed us that the treatments would actually become more aggressive now. Apparently the treatment she proposed to us at first, before the pet scan results were in, was merely intended to extend Jerri's life by x-number of months, because the doctor fully expected the pet scan to show significant spread. Since the scans were negative, the chemo dr wanted to get more aggressive and treat this as they would treat a stage-2, hoping for a better chance to control this thing. I know this is supposed to be a good step, but this whole thing is very nerve racking.

Last Monday Jerri started a six week treatment program of radiation (5 days a week) supplemented with 5FU administered by a portable pump, 24 hours a day, 5 days a week. Then a month month off, new scans, and possibly a new round of chemo for six months.

Ohhh, we also found out her cancer does not produce the CEA marker. Great. So, other than scans, which, I gather from your postings and from doctors aren't all that accurate, we have no way to track her progress. Kinda' like driving on a pot-hole filled road at night with no headlights.

She's starting to feel some of the side effects I think. Nauseau after eating mainly, but it's only been one week. Can't wait for the rest to start.

Lisa...you'll be pleased to know Jerri's going to start on some of the nutition stuff in one of the books you've suggested, with concurrence from the doctors. No anti-oxidants though. Jerri wants to buy a juicer. Her ob/gyn suggested herbs for hot flashes/night sweats instead of hormones. More to learn.

Well guys, thanks for letting me ramble on. I read all the postings and try to take in as much as I can. You're a good group.

I hope all of you have a really good holiday season.

Jimmy

steved
Posts: 836
Joined: Apr 2004

A rocky path it is indeed and unfortunately the end isn't always in sight! But it does get better. It is in fact excellent news that they are being aggressive as if it was Stage 2- this means the aim is cure en remission rahter than palliative care to extend life. It does mean a rougher ride in the short term but wit hthe prospect of a better outcome in teh long term.

That is the way we think in our house- i am still in the midst of my six months postt op chemo and suffer with nausea and tiredness but it is worth it for the prospect of being around to see my son grow up in the long term . When I started my preop chemo and radiation back in March with the prospect of an op and then more chemo I thought it would never end. But now I have six weeks to go till the end of chemo then an op to reverse my ileostomy and that is it for treatment for now- the end is becoming a little less hazy.

My rather vague point is that no matter how big these hurdles of treatment seem -they do pass with time. Some rough times int he short term are worth it for the opportunity to be around in the long term. Try to deal with it a step at a time and be there to support Jerri when ever she needs you.

Let us know how things progress and keep up the fighting attitude,
Steve.

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Jimmy & Jerri -

For the record, the roller coaster does eventually slow - but you never get off. It's sort of like the Hotel California (You can check out any time you like, but you can never leave).

The good news is two fold:

1. Jerri is not receiving "pallative" (I hate that word) treatment and

2. Her doctors believe she is young enough and strong enough to endure the aggressive treatment.

GO AFTER THAT DRAGON with both barrels!

As for nausea and fatigue; they're a part of the game. Try to stay hydrated and push through if at all possible. The biggest battles are not easily won.

I wouldn't sweat the CEA issue, I don't pop on the CEA test either - the scans are better than CEA markers anyway.

Hang tough you guys. The battle is on, and you're winning. Keep up the fight.

- SpongeBob

MUGGINS
Posts: 35
Joined: Apr 2004

HI JIMMY & JERRI,
MY SISTER-IN-LAW IS GOING THROUGH THE SAME THING JERRI IS GOING THROUGH. SHE WAS DIAGNOSED IN MARCH AND WILL BE RECEIVING HER LAST FULLBLOWN CHEMO IN JANUARY AND THEN GO ON A MAINTENANCE REGIMEN. HER SCANS HAVE BEEN CLEAR SO FAR WHICH IS GREAT NEWS. HER DOCTORS TOOK A VERY AGGRESSIVE APPROACH TO TREAT HER AND SO FAR SO GOOD. KEEP POSITIVE AND YOU ARE IN MY PRAYERS

Fitlisa
Posts: 99
Joined: May 2004

Hi Jimmy and Jerri,

The rollercoaster never stops, but it does slow down..besides, it makes us truly appreciate life when we, more than most in the general population, realize how tenuous this life really is.

I too was told my surgery was a success and therefore were very aggressive with my chemo also..I see that as a good thing - attack with all we can.

Also, like Jerri, my CEA was normal even with a golf ball-sized tumor inside me but they also missed my original tumor on a Cat scan..so, what do we do. I guess we put our faith in ourselves and our doctors.

I too did the Folfox chemo, (5-FU, leukovorin and oxilipantin with the pump, etc.)and had no side effects except for pretty nasty nausea which was controlled with 8, yes 8, anti-nausea medications. I did a lot of guided imagery and meditation which also helped with the nausea, as did lots of fluids.

Im really glad she is reading the books, etc. There is also a great book written by a survivor, Greg Anderson called "50 Essential Things to Do If You Have Cancer" which I HIGHLY recommend...its a wonderful book which Im sure you both will enjoy.

My thoughts and prayers are with you both. Have a wonderful holiday season and a very happy new year.

Lisa

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi Jerry,

Thanks for the update on Jerri.

I did not give off a CEA either and I have always felt it was a blessing rather than a bane. It is one less thing to worry about.

Also at Mayo they do NOT give chemo for Stage 2 colon cancer. I know this for a fact since my oncologist had stage 2 and he was so relieved that he did not have to make the chemo decision. So I am surprised that you said your doc was treating it aggressively as if it was Stage 2. ??

I hope all goes well. I would highly recommend Beating Cancer With Nutrition by Patrick Quillin and he helps with the supplement and chemo question.

The best to you both.

peace, emily

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