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my scan results

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

Hi Everybody,

Well, I ended up waiting over the weekend for my scan results, but I really wasn't fretting or worrying too much about it. I had a Dr. appt this morning and got and discussed the results then. "Good" and "stable" are the results. On my last PET in late July, I had old and new nodules lighting up in my lungs. None went away, but they are stable, with the largest shrinking by a couple of millimeters. The new nodule that showed up on the July PET in my liver has "now resolved"- it's gone. :) Nothing new has shown up anywhere else in my body. So, at this point in time, I still "just" have the "innumerable subcentimeter pulmonary nodules" that I had before. I had never seen the wording "innumerable nodules" on my reports before- it was always worded as "multiple"- I never really knew how many there were- so it sounds like there are just little nodules scattered all over my lungs. I guess that hasn't changed, I just never really was aware of how many there were. That's why I'm not a candidate for lung surgery or radiation- there's too many. Obviously gone or much smaller would have been even better (although I did get that in my liver!), but I will definitely take "stable". I have no pain or difficulty with breathing, any coughing, etc.- I've been fortunate that I have no cancer related pain at all.

My oncologist acted as this was all good news, and so that's the way I'm taking it too.
I will continue on with the Folfiri every other week. I have a colonoscopy scheduled for Oct. 7th, but I'm really not worried about that at all. I discussed with him how sick I've been getting after each Folfiri treatment & how whatever they've been giving me for antinausea hasn't been cutting it. The give me a few different things in my I.V. for it & I've had a prescription for Kytril. I'm going to go back to the Emend, as it worked when I took it long ago. I'm also going to try adding in ginger capsules for the nausea, as well. I'm supposed to take two ginger capsules shortly before the chemo treatment (which I get Wednesday).
So, we'll see how it goes this time.

Lisa

serrana
Posts: 163
Joined: Apr 2009

Fabulous news Lisa!!!!
Serrana

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

When I go on chemo I juice fresh ginger. I drink it with fresh squeezed lemon juice or freshly brewed tea. This really works for me and for everyone else I know that has tried it. Juice a piece the size of your thumb and add it to whatever you like, if you can handle it drink it straight or mix it with some chicken broth. A very good friend of mine was taking a pill once a day that cost $200.00 for nausea, she hasn't needed one since she's been juicing ginger.

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

John,

Thanks for the suggestion- I will try it!

serrana
Posts: 163
Joined: Apr 2009

Do you have reglan or dexamethasone in your cocktail? I did and never had nausea at all. Ask about it.
Serrana

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

Serrana, yes, I have the reglan, but I don't know about the other. I will ask about it when I go in on Wednesday. Thanks Serrana. :)
BTW- other issues we talked about on the phone are doing a bit better too. :)

Lisa

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi dear Lisa,the results of scan sound pretty good,liver is clean,lung is still stable,no pain.The chemo is still doing its job.Just hope the nausea will be under control very soon after you try the suggestions John and Serrana just posted.Best luck and best wishes to you and your family.Take care.Hugsss.

polarprincess
Posts: 210
Joined: Aug 2008

Sounds like good news.. that is awesome for you. I got dexamethasone as well and never had any issues with nausea either.

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

That sounds pretty good! I'm glad it looks like you're maintaining just fine.

*hugs*
Gail

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Thanks for passing on your scan results. It sounds good. Steady as she goes...

I recall having stomach problems with Irinotecan when I had it with both 5FU and Xeloda. They used to give me something prior to the IV to prevent the early onset of diarhea.

Good luck in your program ahead. I hope things are going better for you.

Rob; in Van

melo72's picture
melo72
Posts: 36
Joined: Aug 2009

My mother gets very severe diarhea when she is on the FOLFOX.she always hospitalizes because of dehydration,low potassium,low sodium and...
May I ask you what was the pevention drug?Maybe we can ask from her Onco to use it for her.

Thanx
melody

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Melody,

I was given Atropine before Irenotecan infusions to prevent "early diarhea" as they call it. Afterwards I would just do the mega-doses of imodium the chemo clinic suggested. I'm not sure if the Atropine would work in the case of FOLFOX but your onc or onc nurse could help you on that.

I am sorry for your Mom. It is such a drag when the treatment takes that much out of you.

Rob; in Van

Fb489
Posts: 69
Joined: Sep 2009

You are a stage 4 survivor from 2004.
have you been on chemo since that time? what were your treatments.
Any advice on what will help me survive as long as you have.

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

Hi "Fb489",

You said I'm a stage IV survivor from 2004- actually, I was diagnosed in August of 2007. So, it's been just over 2 years that I've been dealing with this. There are definitely others on the board that have been stage IV longer than that, and are still around and are even stable. You asked what my treatments have been...

Well, I've been off and on with the chemo during these 2 years. I took Folfox/Avastin at first & it really did help, as my liver was just riddled with tumors and it was throughout both lungs also upon diagnosis. It allowed me to become a surgical candidate and to even have the radiation on my originally found rectal tumor. I didn't have surgery to remove that at first because my lungs and liver were just too bad, so they had to do the major chemo first. I then had six weeks of chemo/radiation, focusing on my rectal tumor- it ended up completely resolving and going away. After considering for a bit, my surgeon and I decided not to do the rectal resection surgery- reasons being there was nothing left there to remove and my cancer had already spread elsewhere (surgically removing the affected colorectal area after radiation, even if it totally goes away is usually to prevent it from recurring and spreading elsewhere)- so I never had the rectal resection. No recurrences there, so far anyhow- (I have a colonoscopy coming up on Oct 7, but nothing has shown up in rectal area on any scans since the radiation there).

I did, however, still have three tumors in my liver (or so they thought- six tumors were actually discovered during surgery). I had my liver resection surgery in May '08. That went well and without any complications. I had no chemo or any kind of treatment from May-August '08 (I should have had some kind of post surgical chemo, but didn't). That August of '08 is when I had a recurrence in my lungs and liver. I was put on irinotecan and Erbitux. The Erbitux gave me a HORRIBLE rash- the worst the doctors and nurses had ever seen in their office, so they said. That has always supposedly meant the Erbitux is working well- well that theory shot out the door when k-ras testing (ordered by my surgeon when he found out what my onc. had me on- they were not a team, unfortunately)- well the k-ras revealed that I had the mutation & my suffering with the rash on it for 2 months had been for nothing.
I was then switched to Folfiri plus Avastin. I took that from Oct '08- April '09. In April '09, my PET scan showed nothing lighting up. I then went off the irinotecan, but stayed on Avastin and added in Xeloda. This was a kind of "maintenance dose". Well, even after staying on this maintenance dose April-July, the July '09 scan showed another recurrence in liver and lungs. Back on Folfiri I went and just scanned, as you know. So, now I'm "stable", with the nodule in the liver now gone and the numerous tiny tumors in the lungs stable. So, I'll continue this treatment for a while- I guess until it no longer works or my body can't take it anymore. We'll see... I'm always looking for new things in the works to have something ready on hand to do if I have to stop taking the irinotecan. There are a few ideas out there- we'll see...

So, there's my long run-down on what chemos and treatments I've had, as you asked.

Fb489
Posts: 69
Joined: Sep 2009

You are a stage 4 survivor from 2004.
have you been on chemo since that time? what were your treatments.
Any advice on what will help me survive as long as you have.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

hugs Iisa good to read all is stable.hope the sickness gets better.also hope your family problems are better also.thinking and praying for you

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

Thanks Sonia. Sorry I didn't get back to you yet on your email. Things are a bit better- not neccesarily on the part of my family, but on how I'm approaching it and looking at it. That helps. How are YOU doing lately? We'll catch up in private email.

Take care,
Lisa

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

Hi Lisa,
It is good to hear that things are stable and that your liver situation has resolved. I am so happy to hear that you aren't in pain. I hope things with your family are OK. It would be great if you could get out and walk with your kids... those endorphins are real... they may feel better.
Thinking of you and saying a special prayer for you.

Aloha,
Kathleen

BTW I had to wait for something today so thought I'd pray while waiting. You came to my mind first. :)

dmdwins
Posts: 453
Joined: Aug 2008

Lisa,
So glad to hear that things are stable. I hope things at home are getting better.
Keeping you in my prayers,
Dawn

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

Kathleen,

I'm touched by your caring and your praying- thank you so very much!
I have been getting out and walking & that's been a good thing. Yesterday we finally had some cooler weather (only in the 80's- it's been so miserably hot before- in the 90's and even 100's some days in the last couple of weeks). So walking in beautiful weather definitely helps my endorphins get going, as you said!

Lisa

mom_2_3
Posts: 965
Joined: Nov 2008

Lisa,

I keep you in my thoughts quite a bit and I am very glad to hear that you had good results from your scans.

Amy

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

That is comforting news, Lisa :)

Good and Stable will definitely work!

Thinking of you an hoping and praying that things continue in a positive direction for you. I hope everything else in your life gets better as well.

((((LISA))))

-Craig

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

Oh yeah, diahrrea is most definitely an issue too- I don't have the drug they give me in my I.V. for it written down & I can't remember it- sorry. whatever it is, it definitely keeps the irinotecan related diahrrea away for a couple of days, but I do have to take lomotil for it starting a couple of days later. It's the urgency that comes along with it that is so awful. I can feel fine one minute, then all of a sudden I get that feeling- which is worse than just needing to go to the bathroom- I'll all of a sudden feel like I've got the flu and need to get to the bathroom asap or I'll have an accident- and I have a few times. I'm told to take the lomotil as preventative. I do much of the time, but there's a balance of how much to take, otherwise then constipation sets in. What a life!

Lisa

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Hi Lisa, I've been on the stable train for quite a while. I do not have as many spots as you but stable is a great word to hear. You know my method of dealing with nausea, it works like a charm.
I'm glad to hear your news, it sounds very good overall
-p

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I think that is great news.thinking of you

michelle

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

Hi Phil,

I'm glad to join your "stable train". Yes, I know your method of dealing with nausea, and
I had actually started to consider it, but don't have the guts to try it, especially now that it may not even be possible in California anyhow. Do you remember how I shared a while back how the pot dispensaries in San Diego county were raided, well today's news is along those lines too... just as I was actually considering it, all this happens- read below...

The headline is "Appeals court upholds dispensary ban". This is regarding a city in Los Angeles County. "The state of California's 2nd district court of appeals said in its decision that the city of Clairmont in Los Angeles County could ban dispensaries without violating the state's medical marijuana laws." "This is because neither law compels the establishment of local regulations to accommodate medical marijuana dispensaries." "What this court said is if you are arguing that a city cannot ban a dispensary, that argument is no longer valid." "San Diego County officials and medical marijuana activists said they are espcially watching a case involving the city of Anaheim in Orange County. Some medical marijuana activists say they believe San Diego county is closely following the Anaheim case because the supervisors here want the permanently ban medical marijuana disepensaries, not regulate them."

Like all the cancer patients and other people controlling their pain and nausea are really a threat? I just don't understand why the feds are spending so much time on medical marijuana dispensaries? It makes me wonder if other stuff doesn't go on there too- like illegal dealing for non prescription patients? I don't know- just wondering. I can't think of any other reason why people would be so against it, if they checked out how it can actually help people.

Well, take care Phil-
Lisa

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

Lisa, It sounds like good news to me.They used innmerable pulmonary nodules on Johns report also. I didn't like hearing that but they did say they were shrinking.
Stable is a good report I think.
This is funny but it wasn't at the time. John and I sliced ginger up and put it in the freezer. We pulled it out and put it in the jucer and it broke the screen. Scared us almost to death! So, don't do that. We had to buy another jucer. Take care Lisa. Thinking of you. Paula

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

To Everyone who commented- Serrana, Craig, Amy, Dawn, Gail, John, Michelle, Sonia, Melody, Rob, Phil, Kathleen, Paula, polarprincess, fightformylove, and anyone else who commented or has read my post here- thank you so much for your caring, thoughtful words here. It is really appreciated & I enjoy hearing from you all too & am also praying for you all, as well.
I'm doing okay and I will keep on fighting!
As for today, I ran around getting the kids to school (which is a big task in a rural school district since the schools are several miles apart)- I'm tired and am going to go back to bed for a little bit after writing this.
Sweet dreams... (I think I'll unplug the phone too... :)

Lisa

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Hi Lisa, I'm so happy to hear the liver spot is gone! I'm praying the chemo gets rid of the rest of those little pesky spots next! Awesome, I tell ya!

Coming home from Bible Study today (Beth Moore, John the Beloved) I had a long talk with my Father about you. :o)

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

Hi Diane,

I'm glad for that "talk you had...!" :)
I've had many with Him lately too. :)

Take care of yourself,
Lisa

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Glad to hear the liver is clear - great news. I hope the nodules in your lungs clear too, and that the Emend helps you with the nausea.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

You got some wonderful news there, I hope my liver gets some sort of treatment like yours! I'm, glad to hear the liver is clean, I hope it stays that way, you are in my prayers!

Hugssss!
~Donna

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Your body heals as you sleep, so get all the rest you can and try not to stress too much. My husband says that I am a few notches calmer now and I guess I am. We have to think of us. Tell the family what you need and if they don't do it, worry about it tomorrow.

Great to hear that you are stable. Bless you!

If I ever get to San Diego, I will have to let you know. You are in that area right?

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

Thanks, Donna!
You're in my prayers too! :)

Lisa

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

Hi Kathryn,

Thanks for the note and well wishes. I hope the Emend helps too! I'm adding ginger capusles in this time, as well, so I'm sure hoping for no throwing up this time! Hope you're doing well also.

Take care,
Lisa

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

Hi NanaB/Raquel,

Thanks for the words. Yes, I'm in the San Diego area- actually in far north San Diego county, which is probably 40 miles north and slightly east of downtown San Diego. If you ever get to San Diego, I'd love to meet you! I'm not far from Orange County and Riverside county too, if you ever end up there at all.

I just woke up from my nap about 20 minutes ago & got about 2-1/2 hrs. This was a rare day that I didn't have other commitments, so it was nice. The running around is coming again soon with school getting out & then the orthodontist appt for my daughter, the Dr. appt. for my son... but I'm okay and not stressing.
I'm glad you're feeling better these days, too!

Hugs,
Lisa

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I will let you know when I am down there, I live in Fresno, but my friend has a house in Oceanside that is available to me.

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

Nana,

Oceanside is very close- 7-15 miles, depending upon where in the city- that would be perfect, just let me know when you're down here!

Lisa :)

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

That's great, Lisa! Of course we all want to hear those glorious words, NED, but at least we can consider that true of your liver!! How wonderful! Now we can expect the same thing to happen with your lungs!

Hugs,
Krista

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

Hi Krista!

Yes, I'd love to join the NED team someday, but I'll definitely take "stable" for now. :)
Like you said, NED is for my liver right now- I'll hope and pray it stays that way. My history has shown, though, that anytime I go off chemo (or even down to just "maintenance") that I get a recurrence. So, I guess I'll just have to keep on with the chemo for now, anyhow. Hope you're doing okay, yourself! You sounded good the last times I've read your posts.

Take care,
Lisa

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

About your liver. My sister also seems to have a recurrence when she goes off the chemo. I know it is hard to accept that you have to keep on chemo, but hang in there. You are strong and I know your kids loved you taking them to school. Get your rest and keep the faith. I love reading your posts and you have such great advice to all the newbies on the board. I'll be praying for you. Marie

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

Dear Lisa,

I havn't been posting for the last few days but want you to know that I have been praying for you and your family. I am so sorry that you are having to deal with all of this. Just try to remember that you have to take care of yourself. Easier said than done..I know..but this stress is not good for you. Sometimes people get distant when a loved one is ill. It's a protection for them. Hopefully they will realize that it's not the way to deal with things.Big hugs to you...You are such a fighter and you deserve to be taken care of also. Please rest and do something for yourself every chance you get. You might even have to "make time for yourself." Moms have a hard time with that but you must.

God Bless You,

Debbie (gramma)

impactzone's picture
impactzone
Posts: 541
Joined: Aug 2006

Overall..good news. I admire your strength adnas a stage 4 guy from 2006, I know how much you go through. Santa Barbara area here so some close prayers sent your way. the physical stuff sucks but I just keep fighting the mental aspect. Ginger has helped me in the past but I did talk to the onc regarding any drug interactions. He seem ed to think that it was not a problem as long as it wasn't mega doses. Kepp up your spirits.
Chip

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

Lisa, Things are moving forward! Excellent news. Your posts are sounding a little more upbeat sounds like your back on kick cancer A** track!! Good for you, hold on a little tighter when things get weary and let your friends on the board help carry you through this mess. So happy your doing well! Make it a Great Day!!!!
Goofyladie (Cass)

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

Lisa, Things are moving forward! Excellent news. Your posts are sounding a little more upbeat sounds like your back on kick cancer A** track!! Good for you, hold on a little tighter when things get weary and let your friends on the board help carry you through this mess. So happy your doing well! Make it a Great Day!!!!
Goofyladie (Cass)

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