help!

nanuk

I may not make sense, but must try..I'm in hosp, just returned from surgery, and still "under the influence" from drugs, etc. for some reason unable to access e-mail, but can get on web. They just confirmed colorectal lung mets-(small, many, both lungs..) TME w/colostomy Nov 2000, chemo & radiation, no recurrence until now, scared to death, can't talk to Onc until next week, and I'm sitting here going mad..is there anyone with similar history, knowledge, etc. ?
Can you have colorectal recurrence in lungs w/o
cancer in colon or other sites, or do I assume its back in the colon too? (haven't had a colonoscopy for 2 yrs) they found the lung mets in a recent CT-(adominal/pelvic/chest) but other areas were clear.
How do I know it hasn'tspresd to bone, brain,and other areas not covered in CT.
I would appreciate hearing from anyone..thanks, bud

jsabol

Dear Bud,
Sorry to hear about your current results. It's hard to know what it will mean for you without hearing from your onc. As a rookie in this cancer, I'm sorry that there is nothing that I know that can be of help, but I do know that I am sending many positive thoughts your way across the miles. Hang in there and know that we are all pulling for you. Keep us posted. Judy

KrisS

Bob- I am sorry to hear the news.

I have stage IV disease (dx 5/02) with lymph node, liver mets and possible lung mets.

Yes you can have recurrence in another organ without recurrance at the primary site. In fact, that is the most common thing to happen.

As far as spread elsewhere, my impression is that you tend to have symptoms of bone mets (pain) more than from lung or liver mets. PET scans can be useful to evaluate for spread elsewhere. I do not know if that would change what they suggest doing for treatment, once they have confirmed that you have metastatic disease. (they didn't investigate my possible lung nodules further because they had a biopsy from a lymph node near my spine that confirmed metastasis there.) I do ponder about brain mets but never have had an MRI to evaluate for them.

When there are metastatic lesions that are too numerous or in an area that cannot be surgically removed, chemotherapy is the usual treatment.

Fortunately, in the last few years, new chemotherapeutic drugs Irinotecin, and more recently oxaliplatin have been developed and are helping lots of people. I have been on oxaliplatin/Xeloda for 8 mths. This shrank my large lymph nodes dramatically and my liver nodules are no longer visible. I am tolerating it well. I understand that FDA has just given approval for oxaliplatin to be used as a first line chemo drug, instead of just after failure with irinotecin.

Several new drugs- epidermal growth factor (EGF)inhibitors-Erbitux of Imclone fame, and Avastin an inhibitor of vascular endothelial growth factors (VEGF) are due to be reviewed and probably approved by the end of next month and may offer further benefits.

I do not know if there are any new trials for anything more promising, but this is something you may want to talk with your oncologist about when you meet with them.

Take care,

Kris

nanuk

KrisS said:

Bob- I am sorry to hear the news.

I have stage IV disease (dx 5/02) with lymph node, liver mets and possible lung mets.

Yes you can have recurrence in another organ without recurrance at the primary site. In fact, that is the most common thing to happen.

As far as spread elsewhere, my impression is that you tend to have symptoms of bone mets (pain) more than from lung or liver mets. PET scans can be useful to evaluate for spread elsewhere. I do not know if that would change what they suggest doing for treatment, once they have confirmed that you have metastatic disease. (they didn't investigate my possible lung nodules further because they had a biopsy from a lymph node near my spine that confirmed metastasis there.) I do ponder about brain mets but never have had an MRI to evaluate for them.

When there are metastatic lesions that are too numerous or in an area that cannot be surgically removed, chemotherapy is the usual treatment.

Fortunately, in the last few years, new chemotherapeutic drugs Irinotecin, and more recently oxaliplatin have been developed and are helping lots of people. I have been on oxaliplatin/Xeloda for 8 mths. This shrank my large lymph nodes dramatically and my liver nodules are no longer visible. I am tolerating it well. I understand that FDA has just given approval for oxaliplatin to be used as a first line chemo drug, instead of just after failure with irinotecin.

Several new drugs- epidermal growth factor (EGF)inhibitors-Erbitux of Imclone fame, and Avastin an inhibitor of vascular endothelial growth factors (VEGF) are due to be reviewed and probably approved by the end of next month and may offer further benefits.

I do not know if there are any new trials for anything more promising, but this is something you may want to talk with your oncologist about when you meet with them.

Take care,

Kris

thanks kris..I'm in a little better shape today...I think it's harder on friends
than the patient..I found myself reassuring her that everything is OK.. how &
with what frequency do you recieve your chemo? Does "tolerating well" mean
you can carry on normal activities? Thanks for your response-I love this site! Bud

nanuk

jsabol said:

Dear Bud,
Sorry to hear about your current results. It's hard to know what it will mean for you without hearing from your onc. As a rookie in this cancer, I'm sorry that there is nothing that I know that can be of help, but I do know that I am sending many positive thoughts your way across the miles. Hang in there and know that we are all pulling for you. Keep us posted. Judy

thank you Judy; it's nice to see your supportive words come across thepage; to know someone
is out there thinking about me means a lot! I'll post again when I see my Onc in a week of so..
Bud

2bhealed

Oh Bud,

My prayers are with you Mr. Alaska! PET I think goes into the brain area if I remember correctly. VERY surprised it will take a week to see your onc??? And no colonoscopy for two years?? When was your dx and initial surgery?

Know you are not alone.

Watch some SpongeBob episodes....the laughter is supposed to be healing....of course laughing is probably not advised after surgery! :-)

My heart goes out to you Bud. Keep us posted. Can you go into the Chat Room from the hospital? I couldn't but if you can it's a great place to hang out. Sometimes it takes awhile for it to let you in but it's worth the wait.

peace, em

KrisS

nanuk said:

thanks kris..I'm in a little better shape today...I think it's harder on friends
than the patient..I found myself reassuring her that everything is OK.. how &
with what frequency do you recieve your chemo? Does "tolerating well" mean
you can carry on normal activities? Thanks for your response-I love this site! Bud

Hi again- I know what you mean about friends, I end up doing the same thing with mine.

As for chemo, I have had irinotecin, and had a rougher time with that but I was also getting radiation therapy at the same time, and that contributed to the problems. I have since been on oxaliplatin. Everyone responds differently, and -different oncologists have different protecols, but I get oxaliplatin infusions once every 2 wks, followed by Xeloda (capcitabine) an oral drug similar to 5FU twice daily for 5 days.

The drugs can cause nausea, although I rarely actually vomited. It took a few weeks to find the best antinausea drug for me, but now I rarely feel queasy. I have maintained my weight and hair. I feel tired, especially on day 3 and 4 post chemo, and ideally would like to nap, but I have put in an 8 hr day at work on those days at times.

Xeloda and 5FU can cause mouth sores. Fortunately I have never had these. I do get hand foot syndrome- hands/feet get very red and sore and I don't feel like walking much for about 2 days. For some odd reason this week I had hand inflammation so badly that it was painful to unsrew the lid of a jar, and did lay me up. Lasted only one day though. Otherwise, I've can hike, lift weights,(although not as fast or much as I used to). I've traveled, as well.

The big problem with oxaliplatin is development of acute and chronic peripheral neuropathy. The acute form makes your hands and face and mouth tingle and sting when they get cold. I wear oven mitts to get things out of my freezer, and drink warm things. Most people get this symptom. It gradually tapers off in severity over 5-7 days. On those days, I do my "hiking" indoors here in Wisconsin.

More permanent neuropathies with decreased sensation in hands and feet can be a bigger problem with long term treatment and, if it gets bad enough, can necessitate discontinuation of treatment. I have some moderate loss of sensation, but it has not caused me any difficulty. I am getting an infusion of calcium and magnesium before and after my oxaliplatin to try to reduce the problem since there are some preliminary reports to suggest that this helps. It adds 2 hrs to the otherwise 2.5 hr infusion, but I think it has been worth it.

I have had a port since 6/02 and love it. Most people receiving oxaliplatin go for one because the infusion of the drug through a regular catheter in the arm can be quite uncomfortable from what the nurses tell me. Blood draws can be done through it as well (although not not the injections for contrast CT). Proper cleaning of the skin over it, and careful bandaging are very important to avoid infections which can be real trouble. Oncology nurses deal with ports all the time and are careful; others may not be so experienced. If you are going to get one, make certain that someone skilled in placing them does it. Like anything else, there are little tricks to placing them that can make them work better. It is a quick procedure. I had mine put in under a local and went back to work a couple hours later.

Best wishes,

Kris

wildcat

I have been told that is why you have chest ex-rays and pelvic to chest scans because the lung is the most common occurance for the mets to show up. It does not mean that you have colon cancer again. I am assuming that your colon cancer was stage 3. First the good news. A close friend of mine found a spot on his lung last week (colon, kidney cancer) and the spot ended up being nothing. Second part of my news is that this does not mean you have colon cancer again. Chances are actually slim to none that it is in the colon. My thoughts and prayers are with you here from the State of Kansas.

nanuk

KrisS said:

Hi again- I know what you mean about friends, I end up doing the same thing with mine.

As for chemo, I have had irinotecin, and had a rougher time with that but I was also getting radiation therapy at the same time, and that contributed to the problems. I have since been on oxaliplatin. Everyone responds differently, and -different oncologists have different protecols, but I get oxaliplatin infusions once every 2 wks, followed by Xeloda (capcitabine) an oral drug similar to 5FU twice daily for 5 days.

The drugs can cause nausea, although I rarely actually vomited. It took a few weeks to find the best antinausea drug for me, but now I rarely feel queasy. I have maintained my weight and hair. I feel tired, especially on day 3 and 4 post chemo, and ideally would like to nap, but I have put in an 8 hr day at work on those days at times.

Xeloda and 5FU can cause mouth sores. Fortunately I have never had these. I do get hand foot syndrome- hands/feet get very red and sore and I don't feel like walking much for about 2 days. For some odd reason this week I had hand inflammation so badly that it was painful to unsrew the lid of a jar, and did lay me up. Lasted only one day though. Otherwise, I've can hike, lift weights,(although not as fast or much as I used to). I've traveled, as well.

The big problem with oxaliplatin is development of acute and chronic peripheral neuropathy. The acute form makes your hands and face and mouth tingle and sting when they get cold. I wear oven mitts to get things out of my freezer, and drink warm things. Most people get this symptom. It gradually tapers off in severity over 5-7 days. On those days, I do my "hiking" indoors here in Wisconsin.

More permanent neuropathies with decreased sensation in hands and feet can be a bigger problem with long term treatment and, if it gets bad enough, can necessitate discontinuation of treatment. I have some moderate loss of sensation, but it has not caused me any difficulty. I am getting an infusion of calcium and magnesium before and after my oxaliplatin to try to reduce the problem since there are some preliminary reports to suggest that this helps. It adds 2 hrs to the otherwise 2.5 hr infusion, but I think it has been worth it.

I have had a port since 6/02 and love it. Most people receiving oxaliplatin go for one because the infusion of the drug through a regular catheter in the arm can be quite uncomfortable from what the nurses tell me. Blood draws can be done through it as well (although not not the injections for contrast CT). Proper cleaning of the skin over it, and careful bandaging are very important to avoid infections which can be real trouble. Oncology nurses deal with ports all the time and are careful; others may not be so experienced. If you are going to get one, make certain that someone skilled in placing them does it. Like anything else, there are little tricks to placing them that can make them work better. It is a quick procedure. I had mine put in under a local and went back to work a couple hours later.

Best wishes,

Kris

thank you..I'm sure I will find your answers more detailed than my doctors..that really helps me to
know a little more in advance what to expect; I had a port when on chemo-(5fu) and radiation, and
it was convenient in terms of travel. I am in Alaska, and 70 miles from the closest oncologist.I'll probably buy an RV and stay in town if side effects are bad..
Some of what you say about your activities is encouraging. I had almost every side effect in the book when on chemo/radiation, and didn't finish the course. How long do you have to remain
on the oxaliplatin/Xeloda protocol?

spongebob

Bud -

Looks like you're going to have to go back to work and slay the dragon again. Sounds like you're doing the right thing; gathering information, developing a plan - sharpening your broadsword. I would suggest you nix the SpongeBob cartoons and do a Conan the Barbarian marathon.

You hang tough - I know you are seeing as you're up in the Last Frontier. Keep that spirit going and make your namesake (nanuk) proud!

- Sponge Bob (but I really wanna be Conan - back to gym, I guess)

VonnieKai

Hi Bud
Sorry to hear about the lung mets - I know it's devastating. As the others have said, having lung mets doesn't mean the colon/rectal cancer has returned. My husband had a colonoscopy 1 year after his surgery and there was no indication of recurrance. His chest/abdomen/pelvis CT-scans were clear for over a year after surgery too. The mets clearly showed up in late October after a suspicious, but inconclusive CT-Scan in July. Our oncologist said that lung mets were more common for rectal cancer. My husband started on chemo (CPT-11) in late October. The combination of the holidays and low white blood cell count made his chemo treatments irregular and he only had three infusions through December. He started back on a regular schedule now a couple of weeks ago and, since the oncologist lowered the dosage, he is really feeling pretty well. From my research, if at all possible, try to have surgery to remove the mets. There have been studies that removing the mets, even numerous ones, dramatically increases survival times and times between recurrance.
Take care, Bud.

andreae

Hi nanuk,

I'm so sorry about your recent re-diagnosis. I know it's hard, scary, saddening, maddening - in sum, it's probably one of the scariest/most devastating things to hear in one's lifetime. I don't think I have had the opportunity to talk to you but our stories are very similar. I was diagnosed with stage 3 rectal cancer in January of 2003. I had combination radiation/chemotherapy, surgery (abdomino-perineal resection of my rectum and a partial vaginectomy with a permanent colostomy), and more chemotherapy. I was all done with my protocol and all the doctors were pleased. On the follow-up CT done two weeks after my "last" chemo, 11 small lesions appeared in my lungs. In November, I began a Xeloda/oxaliplatin protocol. I did a CT last week to see how I'm responding and still waiting for results. Phew! I don't know what other questions you have, but anytime you have to talk/vent/compare, ect. I'm here. I have also had to fight to get on a protocol (long story) so I have done a lot of research on different options... Anyways, I'm thinking of you and I'll be in touch.

Lots and lots of hugs and good wishes,
Andrea