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Hi from the UK! 32 Year Old Liver and Lung Mets

concernedgal
Posts: 33
Joined: Feb 2009

Hi everyone

I'm from Scotland in the UK and have been reading this forum for this past week as my brother was diagnosed with bowel cancer which had spread to his liver and scan showed small tumor on lung.

We are worried sick as he is only 32 years old and his daughter will soon be turning 2 years old in April.

His oncologist is supposedly good but his attitude stinks! I understand he cant be positive all the time but not any words of encouragement have passed his lips.

I found out about a liver specialist in England who was happy to meet my brother but cant perform surgery as the liver tumors are scattered although if the chemo works and shrinks the tumors he said he could operate.

He started chemo on Thursday and is on oxaliplatin every 3 weeks for 2hrs and home with xeloda which is 8 tablets a day I think. He will find out next week if hes compatible for Erbitux.

Would be great to chat to people in a similar postion as the forums in the UK are all rather depressing with not many success stories.

Thanks

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

Hello,
Sorry to hear about your brother. You will find this site to be filled with many positive stories of survival - even stage 4 survivors! I have read about those in a similar situation sd your brother who end up doing remarkably well. I think doctors sometime do not want to commit to anything as far as good news since it is very hard to predict outcomes as far as cancer goes. Hang in there and keep on giving your brother support as I know you will. We are here to listen and help where we can.

All the best, Lance

concernedgal
Posts: 33
Joined: Feb 2009

Thank you for your reply.

I know its hard but was thinking if we didnt find out about the liver specialist then he would have had no hope. Just gets a bit frustrating to think we have to do the research as the Doctors don't provide enough answers/solutions.

Im quite concened about his weight as he is losing weight fast and can't afford to. Looking at Ensure Plus drinks to see if he could take them. Hes not eating junk as hes scared incase it makes the cancer worse and he also hasnt got much of an appetite due to his stomach pain

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

If you are proactive and press for answers you should get them. Is there a hospital near you that specializes in cancer treatment? I would try to get a referral to go there if possible.

Cheers, Lance

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi Concernedgal (do you have a name we can call you by?),

Welcome to our little virtual corner on the web! I'm glad you found us... and hope that although we talk about our various treatments here (in the US and in Canada), that they have similar versions in the UK. I'm sure treatments for cancer are pretty universal throughout most of the world.

In Scotland, is it possible to change oncologists if your brother does not feel comfortable with the Dr. he has? I don't know if it's just me or not, but I feel a huge part of the successful healing is how you feel with the medical team you have... and the oncologist is the head of the team. This team basically has your life in their hands with what recommendations and decisions are made on your behalf. Yes, we all can say yes or no to those recommendations but in reality, we are not medical professionals so we have to have trust in our team that they are doing everything in their power to make us success stories.

I know I have talked in the past of a doctor I had for one procedure who I had 100% confidence that he could do the job (procedure), but his attitude and mine were not the same. He was a bit of doom and gloom and kept reminding me that I was Stage IV (like I had forgotten???)... and the difference between his attitude and my oncologist's. Like night and day... and I DO go to my oncologist to get reassurance that we are on the right track.

So, IF your brother does have the option of changing oncologists, or, as Lance said, if you are close to a hospital or facility that specializes in cancer treatments, it is well worth looking into. There is ALWAYS hope when it comes to cancer, no matter what stage one is diagnosed as... but it is a long road. I'm 2 years into my journey and have a ways to go ... but (other than the cancer) I'm healthy and active and back to my "taking on too many projects" so am busy around the clock . But the key, central person on my medical team is my oncologist... and it is imperative that the patient and their doctor is on the same page.

Please stick around... ask whatever questions you are concerned about, no matter how big or small. And if your brother has access to a computer, tell him that we would be happy to have him join our merry band of survivors :) As a concerned sibling, you are more than welcome because you will be a survivor too... your brother may be the one who has the cancer, but it affects EVERYONE around him. And you all have to go through the journey too... so welcome aboard!! :)

concernedgal
Posts: 33
Joined: Feb 2009

Thanks for the kind words! My name is Romana (not a typical Scottish name!)

There is a specialised cancer hospital and my brothers oncologist works there but visits my brother at his private hospital.

I mentioned to him to maybe get another oncologist with a better attitiude but hes so tired from the chemo he doesnt want to go through it all again.

He was so positive and upbeat thinking the chemo wouldnt be as bad but its really knocked him out. Its more the pain side thats affecting him.

I was under the impression chemo should help the pain but that and his painkillers have only gave him terrible constipation to the point he had to go to the hospital today for an enema which hasnt even helped. He doesnt sleep at night with the pain only in the morning when he can take the painkillers and they knock him out. He has to sleep sitting up which is horrible!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Romana (what a pretty name!)

Now, it's my understanding (and I could be wrong here) but chemo does not cause a particular pain. There are oodles of side affects that he could get from the chemo, especially that darn Oxalpilatin (nasty stuff) that can cause a severe sensitivity to anything cold as well as neuropathy (numbness, tingling) in his feet or hands. But I've never heard that it has caused pain per se.

Now, I know I had a sharp pain in my left side before I was diagnosed... and had that pain for 6 months (I was whining about it but didn't really do too much about it since I kept thinking it would go away). When I was diagnosed, of course, they found a big old tumour in my sigmoid colon that had broken through the intestinal wall and formed an abscess around it, as well, I had perotonitis (infection of the abdomen) so that explained the pain. Needless to say, they threw me on a strong IV antibiotic to clean up the infection and then I had surgery to remove the tumour and 18 inches of colon. Once I had had that surgery and the antibiotic cleared up the infection, the pain was gone. I had to then have 8 months of chemo (12 sessions on the portable pump every two weeks and 2 months of oral chemo while on 6 weeks of daily radiation). None of that caused any actual pain other than it did aggravate some arthritis that I already had.

Soooo, I guess my next question is... has he had surgery to remove the bowel cancer/tumour and have they checked for infection at all? If he hasn't had surgery for the bowel, are they planning on doing surgery??

What has his oncologist said about the pain? My understanding (again, I could be wrong and it may be different from country to country) is that once cancer has been diagnosed and a treatment plan has been organized, there really is no reason anyone should suffer from side affects or pain. There are meds for every side affect... but since everyone reacts differently, no one med works for everyone. That is why it is imperative to let the oncologist know every little pain/discomfort/side affect you have so they can nip it in the bud. The fact your brother is in severe pain and has no appetite, then his oncologist should be doing something about this. If his pain meds are not doing the trick and are causing other side affects, then it's time to change the pain meds.

All of this is just my opinion, and since I don't know his history or even what treatments he's had other than he's just started his chemo, don't take what I say verbatim. But definitely get the oncologist involved! Your brother can't be going through his treatment while he is in so much pain!

Hugggggs,

Cheryl

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Romana, what Cheryl has said is what I was thinking about your brother as well. I haven't read anywhere that a side effect of chemo is pain, although Avastin does cause me sharp pangs in my abdominal area, and I figure it's when it kills blood supply to something that's trying to grow where it's unwelcome! However, these pains are very temporary and they come pretty regularly on schedule the week after receiving Avastin. I would tend to believe constant pain is something that needs to be addressed; could be bleeding or an infection. I am so glad to see you are advocating for your brother when he's obviously in no condition to advocate for himself; he is blessed to have you! Definitely look into getting an oncologist who is a better fit for him; one who knows that cancer doesn't HAVE to be a death sentence! How is your brother supposed to win this battle if all his doctor has to say is that he's going to lose?!!! Perhaps you can do the hunt for him and even the consultation appointments he feels too weak to do himself!
mary

concernedgal
Posts: 33
Joined: Feb 2009

Well he had the pain before he started chemo and before he was diagnosed with cancer.

Was a constant pain which spread round to his lower back. The Drs keep saying it doesnt seem to be related to the cancer but it must be as that was the only symptom he had, on top of this the pain killers gave him constipation which made it worse!

He has had his painkillers changed and will see how he is tomorrow although he has a tendancy to play things down.

The surgeon said the bowel cancer is "not cause for concern" at the moment. They wanted him started chemo right away for his liver as the bowel surgery could have delayed the chemo. Then we got the devastating news last Thursday that there was a tumor on his lung.

Makes you wonder if your prayers are working as it seems to be bad news after bad news and really knocks your confidence. Im researching as much as I can as I hate seeing him in pain and he shouldnt have to suffer.

It worries me that he may not have the strength anymore to carry on as he must be thinking is this what the next 6 months is going to be like?!

Romana x

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I know it is hard when you don't get the answer that you are hoping for, at least it doesn't SOUND like the answer you are hoping for! I know when I am dealing with a recurrence I wonder why I can't be the one who can say it's been 5 years of NED? I always do come to the realization, eventually, that I am a living miracle. The fact that I am still alive today, and that I have the love of my daughters and my family is a miracle, indeed! Sometimes the path is rough, but God gives me the strength I need when I need it and that's enough! I have been greatly blessed over the 48 years I have been on this earth, and I certainly don't deserve even 1/2 of what I have received! I am able to look back on my life and see the many angels who I have met along the way and the many wonderful experiences I have been able to enjoy! Sure, there have been some really hard times, and there will undoubtedly be more in the future, but the rainbow always comes after the storm. On Sunday I was talking with some ladies in my Sunday School class about the surgery I will be having in May. Their response was that they are amazed that I can be so happy through the things I have experienced. The obvious response to that is two-fold. First, come see me on the days when I am on chemo and feeling like crap, I'm not so happy! But, the second part of my response is even more obvious; I have 2 choices on how I can deal with this beast. I can be determined to live and ENJOY my life the best that I can, and to continue this fight as long as I can, or I can give up and whine about the lot I have been given. I've never been much of a whiner, although I do have my days! Jesus gave His life on the cross for my sins, and I owe Him nothing less in return!
Just my thoughts.
mary

concernedgal
Posts: 33
Joined: Feb 2009

You sounds like such a strong and determined person, I really admire you.

Some people (like myself) would give up and feel sorry for themselves but you are a fighter and thats what I like to hear.

Just hope one day they find a cure for this awful disease!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

You do what you have to do because it has to be done! Period! I am positive you would surprise yourself as to just how strong you are as well! And I agree, one of these days there will be a cure and we will all be able to celebrate!
mary

fez1
Posts: 47
Joined: Jul 2006

Romana- My name is Carol and my husband is the one with Stage IV colon cancer. I know exactly what you mean about your brother not having the physical or emotional strength to look into an new treatment or new physician etc. My husband, too would say, "Carol does that". When he was first diagnosed he was so shocked and overwhelmed with his diagnosis, surgery, treatments etc. I am a nurse and it came naturally to me to discuss things with his doctors. On top of that he worried about our financial situation, our children's futures etc. All the while I took on the advocate role. I do all of the research, phone calls, appointments etc. Does he have a wife whom you could talk with and help with this process? I agree totally with everyone about a new oncologist. I would start with a major cancer center near where he lives, one that can offer him a team approach. Can you ask the surgeon if he would recommend an oncologist? Romana, he is lucky to have you for a sister. As apathetic as he may seem, believe me, he needs your input, support and love. He needs someone like you to take this burden from him. Stay connected to this list. Although we are in the U.S. you'll get good advice and invaluable support. Take care.

Carol

concernedgal
Posts: 33
Joined: Feb 2009

Thank you for your post Carol.

He lives with his girlfriend and there 2 year old girl. She has been great, looking after my brother, their girl and working.

Ive never been to any of his appointments as he goes with his girlfriend and our dad so dont want to interfere but I might ask if I can come the next time so I can see for myself what the oncologist is like.

The surgeon who will be dealing with the bowel tumor recommened his oncologist said hes the best in scotland in his opinion but his bedside manner is disgraceful. Its my brothers life we're discussing and I hate how the base everything on statistics and they cant commit to anything positive incase we sue!

This site really is great, so many great positive people and makes a change from some depressing stories in Britain

Romana

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

Hello,
My name is John, I'm 35, both of my grandfathers immigrated from Scotland. I was diagnosed stage 4 CRC w/mets to liver, gall bladder, plus others. My son was 18 months old when I was diagnosed march 14th 2008. My original diagnosis was bleak, just 2-3 months. I felt it was an odd diagnosis since I was symptom free and had only gone to the doctor for an ulcer. Unfortunately the ulcer was being caused by a very large tumor in the upper right sigmoid colon. More on this later. I think I can help your brother a bit.

1. I had almost unbearable pain from an ulcer caused by my tumor. The pain seemed to come from everywhere and nothing helped with the pain. The doctors couldn't pinpoint where the pain was coming from because I couldn't. I went to my sisters house for dinner and got wicked heartburn, they didn't have anything but her husbands aciphex, I took one, it eased both my heartburn and my other constant pain. I asked my doctor for a small prescription and within two weeks my pain was gone, ulcer was healed, I stopped the aciphex. Avastin sometimes causes perforation in your abdominal wall, maybe an acid inhibitor will help.

2. If your not juicing, START!. Everyone I've shared this with has improved their situation, sometimes dramatically. Twice daily.
a piece of fresh ginger about the size of your thumb, and according to size 2-3 lemons, 1-2 apples, 2 carrots, 1 beet. This usually make about 20 oz of juice. You will see dramatic results on his next round of blood tests. All of his counts will improve. Don't leave anything out especially not the lemons, the lemons and the ginger are the most important, the other fruits are mostly for flavor.

3. If you brother is having a hard time going, use Colace. It's basically just a gel packed mineral oil. I was taking 3 tablets, 3 times daily. These along with the juice will speed things up and relieve internal pressure that will help with pain.

4. Don't worry about your doctors bedside manner. Just worry about whether he is giving you the best chance possible. Your brother needs to know he is in the fight of his life. He doesn't need everyone telling him he's gonna be fine and everything is alright. I can't tell you how many people who have no idea what we're going through off handedly comment how wonderful everything is gonna be. The truth is, if we don't step up we're toast.
5. I didn't qualify for any surgery at first. The doctors said I needed a miraculous response to chemo in order for a surgeon to look at my liver. I had my 1st liver resection july 1st 2008. The cancer recurred and I had a 2nd resection jan13. So just because he can't have surgery now doesn't mean he can't have it later. Find a good surgeon, and interventional radiologist. Perhaps he can get some RFA. I had 2 tumors ablated that weren't removable.
I'm currently in my bed with a J-P drain hanging from my liver. I developed an infection after my last surgery, it hasn't let up. Hopefully things will be cleared up by my anniversary. Because, when the infection is gone my doctors say there isn't any evidence of cancer anywhere, which from where I started a year ago is almost unheard of. Tell your brother good luck. There is hope. He's gonna have the go through hell but it can be done.

concernedgal
Posts: 33
Joined: Feb 2009

Hi John

Thanks so much for the tips. I will print this off and give it to my brothers girlfriend so she can make the drink. Funnily enough someone bought him a juicer last week!

I'm so pleased to hear how well your doing (obviously apart from the infection) I wish you a speedy recovery from this. You deserve it.

Can I ask what chemotherapy you had?

Romana

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

My first six rounds were folfox 6 w/avastin, after my initial surgery I had to have an iliostomy bag for 6 weeks. When that was removed the wound didn't heal in time to start the same regimen of chemo, so I started folfiri without avastin. Once the wound healed I went back on avastin, during this time a single tumor appeared in my liver and progressed quite rapidly. I was switched back to folfox 6 w/avastin for 3 cycles. Even though I only had 3 cycles, the folfox regimen put the smackdown on the tumor, stopped it from progressing and shrunk it a bit. One word of caution, 5FU is a nasty, nasty poison. It will destroy your liver. When he has his liver surgery, make sure he asks his surgeon what the condition of his liver is. The surgeon and the oncologist need to be working together so the oncologist doesn't
fry his liver. I'm sure the oncologist is doing tests to monitor his liver function but that isn't the whole story. A visual inspection of the liver, noting color and texture is more important than the blood tests. On paper my liver functions like a champ, but both my surgeon and oncologist agree I can't have anymore chemo for at least a year.

Oxaliplatin- Some of the most odd side effects happen with this. I experienced peripheral neuropathy, sensitivity to cold, and a shooting shock sensation through my whole body(only 3-5 times). This stuff stays in your body a long time, 2 years isn't unheard of.

leucovorin- Is just a bunch of hopped up vitamins.

Camptosar- This is used in folfiri, is just a lab version of the naturally occurring substance Camptothesin, the drug company alters it a bit when they synthesize it so they can patent it and charge big bucks. This works for some, not me; and gave me the worst stomach cramps, basically made me bed ridden for 4-5 days. Do your own research but if you check all the literature you'll find that if it doesn't work in the first 1-2 cycles it's probably not going to work, that is a high probability. You either respond or not. MY ONCOLOGIST DIDN'T KNOW THIS, I HAD TO SHOW HIM. I know a girl who spent 12 cycles on this, they just kept hoping it would work.
When I showed her, she almost lost here mind. She switched to folfox and had some positive results but had to stop for liver reasons. She's hoping to restart this year.

Avastin- This stops new blood vessels from forming, this is an attempt to starve tumors. I guess it works. This is the drug that will affect when you can have surgery. No surgery within 5-6 weeks of your last dose. Also no avastin within 6 weeks after surgery. It will prevent healing.

Plus here are some things I would love to try if they were permitted by the FDA in my country. You may have access to these in your country, bottom line is they work and are cheap.

DCA- dichloracetate, basically vinegar with two substituted chlorines, they're studying it in canada and it can be bought over the internet, but they won't ship it to the US. I know 4 people who have taken this and it significantly help them, I won't say cure but close.
It works by restarting the mitochondria in the cell which will eventually lead to apoptosis, a cells programmed death. You can get a prescription in this country for this drug if you have lactic acidosis. DCA neutralizes high levels of lactic acid in the blood, but the FDA issued a memo to all oncologists telling them if they prescribed it to any cancer patients they would prosecute them. I saw the memo. It absolutely sucks that there is a drug I can take for less than $1 per day that can save my life and I can't get it anywhere. Trust me I've tried

Avemar- A wheat extract, I know about 25-30 cancer patients that take it and every one has had a positive effect. You can probably get this.

Tetrathiomolybdate- Given to people with high copper concentrations. It can also cause a copper deficiency. Copper is needed in the growth of new blood vessels. Becoming copper deficient is the same as taking avastin, in the future I'm sure we'll be getting both during treatment. The University of Michigan has all kinds of research on this and it's available online.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Thanks for the information that you listed here. I found a lot of it to be very interesting, especially about the 5FU and the liver. I realize that when we are prescribed these toxic drugs (chemo), or even radiation which is not a drug, the oncologists/medical profession to weigh the risks vs the benefits and if the benefits seem to be higher, you have the choice to go with them or not. Even if the benefits do seem higher, there's always the risk that you are going to be hit with the risks. Life is definitely a gamble in that sense.

I'm not sure if 5FU is dangerous for a liver already compromised with tumours, or if all livers are at risk. Lucky for me, I was on the 5FU for 8 months and it didn't affect my liver at all (that's not to say it won't have some side affect down the road).

Now, I do have to say something about dichloracetate (DCA), as a Canadian. It is NOT legal up here and whereas your FDA does not approve of it at all (there have been no clinical trials done on humans), neither does Canada Health. There are quacks up here in Canada just as there are anywhere else in the world... and if someone thinks they can make bucks off of desperate people, then there are those who have no conscience and will.

Here is a very interesting (longish) article that is well worth reading before trying to run out and get your hands on DCA. I remember a couple of years back that there was an article written in one of the medical journals and it just caught on like wildfire! And why not?? When you are fighting for your life and you think someone has created or found a magic pill that might save you, of course you are going to go to the ends of the earth to get it. But the article did not say that... yet that was how it was interpreted. NO clinical trials had been done, so no proof that this would work on humans. And to this day, I can't find anywhere that there are legitimate clinical trials going on for this DCA. I find THAT very interesting too because for something so promising, WHY hasn't it gone into clinical trials here in Canada and the USA?

Anywho... for those who are interested, you might want to check out this article:

http://scienceblogs.com/insolence/2007/05/a_family_practitioner_and_epidemiologist.php

Hugggggs,

Cheryl

PS: Please don't take this as me bashing DCA... if it ever were to go to clinical trial, I might be the first to sign up for it as a guinea pig. I just don't want anyone to get really excited that there is something out there and then be furious with your FDA because they haven't approved it yet. Canada Health (our equivalent of the FDA) hasn't either for what it's worth.

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Your CSN Suppor...
Posts: 200
Joined: May 2008

This is a great discussion, everyone. Open sharing of your cancer experience is welcomed--both what worked and what didn't work for you. However, please remember that dispensing medical advice to others is not permitted. We respectfully ask that you refrain from this in the future.

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

I have 2 choices on how I can deal with this beast. I can be determined to live and ENJOY my life the best that I can, and to continue this fight as long as I can, or I can give up and whine about the lot I have been given. I've never been much of a whiner, although I do have my days! Jesus gave His life on the cross for my sins, and I owe Him nothing less in return!
Just my thoughts.

Better said than any preacher on TV this a.m. Without HIM, all we deserve is hell.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Diane... for heaven's sake.... better said than any preacher on TV??? What kind of an insult is that? A television quack is someone anyone should be listening to??? Without "HIM", all we deserve is hell??

This is NOT a religious forum and unfortunately it gets a bit thick in here with all this babble. NO ONE DESERVES hell... whether you believe in "HIM" or not. For someone to even make such a comment in a non-religious forum does not do religion any justice... it just comes across as a cult.

Sorry if I have offended others. I have always said that whatever gets you through the horrors of cancer or even the day to day stress of just living is a good thing. I have NOTHING against anyone who has a strong faith, no matter what your beliefs may be. If it works for you, then great... but there is no need for the cheerleading to be in every topic on a support forum because, guess what folk... we aren't all on the same team! I have been very respectful of others beliefs and have never once questioned others' faith on this forum and I don't plan to... nor have I gone into every topic and felt I had to spread my beliefs to counteract those of traditional religion.

This forum is meant to share information and support about the one thing we all do have in common... and that is this monster, cancer. If I want to be bombarded with "God is good!" "God has a plan!" "Put your worries in God's hands", then I would go to a religious forum. But I avoid them like the plague. You won't catch me hanging out in a religious forum because I do not have the same beliefs. When I first found this forum a year ago (April 2007) it was a wonderful thing to find such an amazing support group online. I have no idea when all this "Praise be God" came in... if it was a gradual thing or everyone just all got religious at the same time, but it has definitely taken away from what this forum is all about - the actual support that folk have for everyone facing this horrible disease.

So now it's now come down to either you believe in HIM (what's with the capitals on that word??) or you deserve to be in hell?? Well, that's my time to exit... I'm taking a break from the forum. Perhaps down the road when the forum gets back to being a support forum and not a podium for religion, I can come back. I truly believe in giving support to newbies as well as the friends I have made here (not to mention the support I, myself, have received from some on this forum). But I'm not able to spend the time trying anymore to just ignore the religious babble... it's gotten to the point one has to ignore almost every topic :/

I don't understand how people can leave politics out of this forum but they can't leave religion out of it. The two are one and the same and don't belong in any forum other than a religious or a political forum.

Thanks to everyone (you know who you are) that I have had the honour of sharing conversations with, both here on the forum and in email. I am still available in email but I really need to take a break from a forum that has turned to religion, which I do NOT believe is the answer to cancer or to the world's woes.

Good luck, everyone! I know the majority of us WILL beat this disease, not because of who or what we believe in, but because of technology and the leaps and bounds our doctors and science is finding ... and NO, not one of us deserves to be in a state of hell no matter what the television quacks and all their followers spout off!

Cheryl

PhillieG's picture
PhillieG
Posts: 4906
Joined: May 2005

I've rewritten this post 5 times, I wish I could REALLY express how much this topic offends me but I can't without pissing off a lot of people which I don't want to do. But let me say this. If there was a God, why do we have cancer when most all of us (I like to believe) are decent people and others, many who are in politics or recently booted out, are responsible for hundreds of thousands of deaths and they are just fine? Oh, I know, we are being 'tested'.

I have no problem with whatever anyone wants to believe (in private) but I wish there were a separation of facts and make believe and that almost every single post didn't end with God Bless you or the like. Did someone sneeze???
It's been (un)real.
I hope some of my posts from my experiences have helped some of you.
Best of luck to you all.
-phil

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

not sure what happened- my post went up 4 times!

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

another mistake- how do I eliminate the mistaken/edited posts?

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

I edited here, but the posting wouldn't go away- not sure how to do that- read below

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

First of all- to "concernedgal"- sorry your thread has been "hijacked" with this particular discussion and my response to it- but I felt compelled to answer a couple of postings that were inserted in here- please no offense & I do hope that you are okay.

To Phil and Cheryl-
As Diane and Rebecca have both commented, so would I also like to. I am certain that I have also been one who you have been offended by in that I have definitely made quite a few references to "Him" (yes, with a capital letter), and about what I believe God has done for me. I have probably sounded "preachy" in several of my posts, but I was definitely sharing from my heart and soul. As Diane said, I feel like I can identify with her statement of it's who she is and anything less would be acting fake or inauthentic (not her actual words, but my interpretation of them). I so much feel the same way, and I do know that while some may have been offended, several have expressed to me their appreciation of my thoughts and/or comments.
Certainly, I never meant to offend anyone. Cheryl- I would SO miss your posts here- you are so responsive to people's questions and needs and have such a positive outlook and are quite humorous- you've given me quite a few chuckles! I am sorry if I am part of the reason that you're choosing to "take a break" from the site. Phil- I also have enjoyed so many of your postings- the same to you as I just said to Cheryl.

Yes, I have noticed that more recently, in addition to my own comments, that faith in God has definitely become more of a topic here on the board lately. Personally, I was rejoicing about it I felt a kind of comraderie between myself and several others who have expressed similar beliefs. You're right, however, that this is a public forum and not a religious site, so I am sorry for whoever I have offended- that was never my intention. My intention was to share how I have personally coped with life and my cancer diagnosis and all the difficult times I've had with it. I DO believe that there are many positive ways of dealing with illness- certainly eating healthy, learning about/using certain supplements to help fight cancer and build up our immune systems, etc. is very important. There have certainly been many studies that have shown individuals who have a positive outlook and have a belief system in something (not neccesarily the same as mine) DO better and have a better prognosis. I am definitely aware of that.

With all that being said, I must say that, although I will certainly tone it down a bit and will direct it just towards others whom I know feel/believe similarly or those who express an interest or ask about beliefs... I strongly believe that others and myself should NOT have to completely refrain from making any reference to God. As some may believe that dealing with cancer and beliefs in God are as separate like church and state... I cannot completely separate them. Certainly, not all of my postings include discussions about God, because certainly many people are just asking specific questions re. treatments, chemo side effects, diagnosis, surgeries, scans, etc., and so I answer or address those accordingly.

When it comes to life and death and purpose in life, however, I cannot separate what I believe and who I am from how I deal with and discuss these topics. Certainly, I don't expect everyone to agree with me or believe exactly like I do- everyone is free to believe as they wish. So, if I tell someone I am praying for them and they tell me that don't believe in prayer as I do, then I certainly won't continue to say that to that particular person. If they say they appreciate it (as many have), then I will certainly continue to say so (and really DO so) to and for that person. Yes- as many people say "God bless you" when someone sneezes, or some people in life say "I'll pray for you" and they forget about it or really didn't even mean that literally (some people say "I'll pray for you" when they actually mean "I'll be thinking of you". I realize and understand that) But when I say "I will pray for you- I literally really DO mean it and DO pray for that person. I'm not trying to pump myself up by saying that- I'd just like to clarify that I know it is a mannerism for some people (I'm not referring to anyone on this board re. as to having this as a mannerism- I'm just referring to people in general in society, that some have this saying as more of a mannerism- I believe people who have posted this here have been quite sincere), but it isn't that way when it's coming from me. If people don't want me really praying for them, then I won't respond that way to them anymore.

I guess enough said- but I try to be as open and transparent about who I am as possible. If I can share my journey through cancer and that happens to be a very spiritual journey in my case, then that is what I want to do in the hopes that it will help some other people to also get through it all by experiencing what I have experienced. If you don't want that, then- please- just ignore it, instead of taking offense to it.

When I sign my post "Blessings" or "God bless"- I'm not trying to be uppity or seem religious- I TRULY MEAN IT!

So, here goes-

Blessings,
Lisa

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

I'm so sorry I have offended you. My beliefs are a major part of who I am, what I am, and I cannot respond differently without being 'fake' or dishonest. I'll try to not respond to your posts or share my thoughts in a way that might offend you or others.

I hope you'll accept my apology and know that I respect your right to not agree with my beliefs.

Diane

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PhillieG
Posts: 4906
Joined: May 2005

I respect your beliefs Diane and it was not an easy post to write. It just gets to be too much for me. It reminds me of when I was diagnosed and in treatment. My in laws said to me "I pray they are wrong" to which I replied "I have cancer, if anything pray I get better". I think there is a lot to having faith and also that there is some positive energy out there but I think if you or others always heard from lots of people something you didn't believe in (I can't think of a good example, or even a bad one) all the time when to many, the whole question of if there even is a God, it might get tiring for you. Maybe not, I don't know. It's a touchy subject just like politics is. I have faith in the competence of my doctors, not something that I do not think exists. I know there are many people like yourself, who have a very strong belief. They are all over the world and have their own Gods they believe in and it hasn't done a lot of good that I can see but if you believe this, then that's great. Whatever works for YOU. I just can't seem to read a post anymore that isn't praising the Lord for something while we are all sick with cancer. It makes absolutely no sense to me.
Oy vey, this can go on forever....
Good health to you Diane
-p

rrob
Posts: 160
Joined: Nov 2007

Hey Phillie and Cheryl,

I had to sleep on this to see if I can find the right words. I am one of the people who often says "I'm praying for you" in my posts. I understand, probably more than most, that this can bother you if you have an alternative belief, because my younger son (18) has decided he is a nonbeliever. Since he decided this after I was dx'd, I wonder if he shares some of your thoughts on the subject, P. I respect him and his right to choose and it infuriates me when someone tells him he is going to hell-one of his coworkers does this almost daily. I believe that faith, whether it is in God, science, or positive thinking, can make a world of difference in our fight against cancer. I would hate to see you and Cheryl stop posting, because you have a powerful gift for newcomers and other people here. You offer hope, laughter, and experiences that no one else has. As a fellow stage iv, I still laugh when I think about your post with the purple fingers and believe me, some days laughter is such a big gift!

I would also like to offer you a different way of thinking about my posts when I say "I'm thinking of you and praying for you." I understand that you don't believe in my faith and that's okay. If you believe in positive energy, understand that this is my way of sending the most powerful positive energy I have out for you. It means that I truly am hoping for you and that I care so much and want you, me, and every other semi-colon here to beat this disease.

I don't believe God gave me this as a test. I believe that genetic mutation, poor eating habits, lack of exercise, stress, negativity, and just plain bad luck contributed to my getting this--AND I HATE IT! Having to tell my children and watching them cry was one of the worst moments in my life, so I will never forget how awful this monster truly is. I also understand that some people beat this and some don't. Just because someone doesn't beat it doesn't mean that they prayed wrong, didn't pray at all, had too many negative thoughts, etc. It's one of the most frustrating things about this. I don't want anyone to have to go through this. This is one hell that no one deserves.

So bottom line--please don't go away. You help so many people, probably without even knowing it. Our differences can make us strong because we are each unique and bring something special to the table. I would miss you if you truly decide to stop posting, but I hope you will at least keep us up to date on how you are.

Rebecca

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PhillieG
Posts: 4906
Joined: May 2005

Rebecca, thank you. You seem to get it and I am not offended by your prayers for me at all.

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tootsie1
Posts: 5056
Joined: Feb 2008

Phil,

I do hope this doesn't mean that you're planning to leave the board, too. You're such a positive example of someone who's fighting a tough disease and maintaining a life at the same time.

*Hugs*
Gail

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PhillieG
Posts: 4906
Joined: May 2005

I do not plan on leaving. I wish that things did not get waaaay out of hand like they did. It appears that the post that started all of this wasn't even read by the majority of people who had plenty to say on the subject. A knee jerk reaction to certain trigger words I suppose. Many words were put into my mouth by others. I used some "magic mouthwash" to get rid of them. Blah, still leaves a bad taste though. I'm here to help people, I could care less what they believe and I feel one can believe whatever they want. Always have felt that way, always will. I think many of us are on short fuses with dealing with cancer. I certainly get that way at times. I had to step back for a little while but as you probably have seen I have continued to try to help others by my experiences. I hope we all beat this disease or at least live a quality life while we live with cancer.
Thank you for your kind words Gail, all the best to you and yours.
-phil

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

Hi Romana,

I've just read all the other responses people gave you. I'm sorry to hear about your brother- I read a recent article that, in spite of the fact that the standard screening age recommendation for colorectal (bowel) cancer is age 50, more and more doctors are reporting an alarming increase in the number of patients being diagnosed at a much younger age recently. I believe the article said the major increase was in the rectal area, not higher up in the colon, though.

I would like to say "ditto" to so many of the words of advice from others given here already. I am a stage IV patient who was diagnosed a year and a half ago at age 40- not as young as your brother, but still a decade younger than the "recommended screening age of 50".
At first, I was not considered a surgical candidate either because, in addition to the rectal tumor that had grown through my bowel wall, I had numerous tumors throughout my liver and both lungs. I was also told that the rectal tumor was not a priority- they were more concerned about the liver/lungs. My doctor, fortunately, had a very postive demeanor with me. When my husband asked, he did tell him that had I not come in for diagnosis/treatment when I did, that I would have only lasted 4-5 more months. He never told me that, though & my husband kept that info from me for a long time. I told my onc up front that I had already read the internet statistics, knew they were bad, and that I needed to hear encouraging words and success/miracle stories in order for to have the right attitude to fight this. He told me not to believe the statistics I read, because statistics are always at least 5 years old and they're based on patients who were diagnosed and treated at least 5 years ago (which was before they came out with Avastin and some of the newer chemo regimens). He said that things are getting better and better here & that even though I was considered to not currently be a surgical candidate, that we were going to go "for cure" here. I know that my fighting attitude wouldn't have been nearly as good if he had been a downer with more pessimistic news.
So- my story up to date since that time is that I went through 6 months of Folfox and Avastin and had a very good response to the chemo. I went from 12+ liver tumors down to 3 and most of the stuff in my lungs shrunk a lot gone. My oncologist then decided to focus on my original rectal tumor, so I then went through 6 weeks of radiation and chemo to focus on it. Early on, I asked my radiologist, "If my rectal tumor disappears during radiation will I still need surgery there?" She looked at me kind of funny and said "We're not expecting the rectal tumor to disappear- remember it's just to slightly shrink and soften it in preparation for an easier surgery". Well, guess what? I was one of the lucky ones (and I believe God answered prayers)- my rectal tumor shrunk completely away with no sign of any cancer showing up on the biopsies pathology following the check I got about 4 weeks after finishing radiation. I never did have the bowel/rectal surgery, but they are watching it carefully- that was a year ago (mid March)and no recurrence in the bowel, as of yet anyhow!
After that, we addressed my liver & I was then considered a surgical candidate. I ended up having a liver resection (45% of liver was removed) this past May. I didn't get to have the laporoscopic surgery because the tumors were deep, so I have a lovely 8 inch curved scar from it. I recovered fairly well with no complications from the surgery.

That was May. On my first follow up CT scan in August, I unfortunately showed that my lungs were having some intense regrowth of tumors, so I had to start on chemo again for that. It was in both lungs again- everything was under a centimeter, but was widespread, so no radiation or other treatments were considered at the time. I had another scan the day before Thanksgiving in November & about half had shrunk and half had "stayed stable". That's better than growing, but wasn't good enough for me. I have one more chemo treatment in two more weeks & will then get scanned again (4 months since last scan). I hope and pray the crap in my lungs is gone this time! If not, I keep reading about the latest in research and feel encouraged that there's still more they could do for me.

There's a great website to subscribe to the newsletter of that gives all the latest on colorectal cancer advances. I believe it's 3C (Cancer Coalition "something"). I'll look it up as soon as I close here and post what it is- it really is worth getting the newsletter or at least check out the website. I've gotten lots of info from that site that I've printed out and taken into my oncologist- a lot of info that he wasn't aware of. Unfortunately, you really have to be your own advocate and I've discovered you can't just sit back and expect your doctor to inform you of everything that can be done. Some doctors are too "old school" and don't stay on top of things as much. By the way, if your brother doesn't actually change oncologists, perhaps there's another specialized oncologist that he could at least consult with. My insurance authorized me to see another highly touted oncologist at a nearby Cancer Center, but then wouldn't allow me to actually to change over to him for my care. Fortunately, this other kind doctor has agreed to be available to me by phone or email to answer questions that I may have. I have run a few things by him right before going in to see my own oncologist the last two times (also to see if he concurred w/ the type of chemo and treatment my oncologist was putting me on). It was very helpful.

Best wishes to you and your brother.
Lisa

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

Hi again,

I just looked up the website that I told you I would. It's "C3: Colorectal Cancer Coalition"
www.fightcolorectalcancer.org

Definitely check it out. Then, if you want to, you can subscribe to their monthly e-newsletter. I really, really find it helpful & never consider it a "spam" in my email inbox.

Take care,
Lisa

concernedgal
Posts: 33
Joined: Feb 2009

Thank you for all the info everyone, it really is appreciated.

Lisa, your story is amazing!! Where your liver tumors "scattered" then? Please let me know how you get on with your next scan. I will be praying for you.

I've been having a bad few days and starting to feel more down about it all. Im going to the Doctors on Friday about it as Ive been getting chest pains for 2 weeks which is probably stress related.

Also when I read about the statistics and it says 5 year survivial rate after surgery it scares the hell out of me. I've been trying not to google so much but its hard as I feel helpless at the moment x

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

Hi again,

Remember that those statistics are outdated! In order to be a "5 year statistic", one had to have been diagnosed and treated at least 5 years ago, which was before they had some of the current treatments! Current treatments are getting much better, but what we have currently won't be listed in the statistics for another 5 years, and it will probably be outdated by that time too!

You asked about my tumors and if they were "scattered"... Yes, they certainly were. I had liver tumors scattered throughout my liver and my lung tumors were also scattered throughout both lungs. Definitely not good. But I still became a surgical candidate after responding so well to the Folfox and Avastin chemo regimen (Avastin is actually not a chemo- it works on shriveling up the bloodsupply to the tumors)Like I said before, 12 liver tumors were visible in my liver and after chemo I was down to three visible tumors in the liver. A year and a half later, I am still fighting it in my lungs again, but my doctors said nothing is life threatening to me now, as long as things in me stay either gone (of course that's the hope!) or even just small enough to not be of threat.

I pray I will become NED (no evidence of disease) at some point soon, but as long as I'm being watched carefully and treated on and off, I'm here and doing well.
Well, get that chest pain checked out and take care of yourself! I will be thinking of and praying for you.
Blessings,
Lisa

concernedgal
Posts: 33
Joined: Feb 2009

Thanks for the reassurance about the 5 year survivial rate. Seems to be everywhere I read.

Been having a look at that website you recommended, its a good read and very informative. Will find out today if my brother is suitable for Erbitux and with the bad news we've been having im not getting my hopes up.

No-one actually asked the oncologist of the size, how many etc tumors are on his liver or lungs as I think they are afraid to hear the answer. All I know is they are scattered and extensive.

His oncologist mentioned Avastin at the start of their consultation but ran a list of horrible side effects and that they wont try it for now. I was wondering if the side effects i.e. blood clots, strokes are more common in older people?

Take care x

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

Small retort to cheryl on DCA first. There have been human trials on DCA conducted by university of Alberta, paid for by private citizens to the tune of over 1 million dollars, I was a donor. The trials concluded Dec 08. Results should be available soon. I only mentioned as an alternative/addition to conventional treatment. Plus, I personally know people who have benefitted from taking it. As far as the money aspect what a croc. If it's available you can get a months supply for $150. US. As opposed to $14,000.00 every 2 weeks for chemo. Who's making money?

Anyway, if your oncologist is avoiding avastin, find a new oncologist. Avastin is considered first line treatment in the US. The terrible side effects are more common in older less mobile patients. If your brother is mobile and healthy he needs to be on avastin. I am in contact with dozens of CRC patients around my age and I only know 1 person that has had any type of reaction requiring them to stop taking it, and she had abdominal perforations from it.

Erbitux- This is the second line treatment in the US. Only used when you don't respond to the first line of treatment. Erbitux is not a fully humanized antibody, you should see if panitumumab is available, it is the 2nd generation of erbitux that is fully humanized, studies seem to indicate it is better tolerated and more effective than erbitux. I only know a handful of people who have had Erbitux or panitumumab. Each developed a pretty nasty rash, fortunately they say the worse the rash the better it's working.

Trovax? I've been watching this for many years, It's not available in the US, but I think it is available in Spain. It's an actual vaccine that
helps the body fight cancer. It's a new line of treatment called immunotherapy. See if it's available or maybe see about taking a trip to spain. Studies seem promising even though they stopped they're most recent clinical trial in end disease renal cancer. I think their is a clinical trial coming up involving Stage 4 CRC patients. Maybe starting in June or so.

joanneire
Posts: 75
Joined: Jun 2005

Hi Romana

I'm from Dublin and my husband has stage four colon cancer. We have a 5 month old son (who arrived as a big surprise considering all the chemo/mediacation my husband has taken!). We are both 29 and my husband was diagnosed in Oct/Nov 2004. Please feel free to send me a message if there's anything you'd like to discuss.

concernedgal
Posts: 33
Joined: Feb 2009

Hi guys thanks for all the replies and info, really helpful.

Joanneire - So sorry to hear about your husband,I will msg you.

Well my brother met his oncologist on Thursday to see if hes able to get erbitux but the results hadnt came back. He said the Dr was the best hes been and a bit more positive saying hes pleased to hear his side effects werent as bad as most and thats good but needs to concentrate on gaining weight as hes very skinny.

Can I ask if anyone had any problems when eating? My brother is really slow at eating and gets the hiccups a lot. He didnt mention it to his oncologist but my mum keeps commenting on it and is worried.

Thanks x

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

I don't know anything about the hiccups, but I gained 40 lbs intentionally before my last sugery, I needed it too, since this infection I've lost all of it but am now keeping my weight up. I just did the opposite of what dieters do. I ate more calories than I needed every day, I did most of this in the form of juices and protein shakes. I ate about 400 calories before I went to bed at night. Usually some form of complex carbohydrate so that it could digest slowly overnight, most common forms are sweet potato, oatmeal, brown rice. If he still has a blockage, liquid fiber, colace, and juicing might help with the added caloric intake.

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

My husband got them alot and they would last up to 3 hours sometimes. They gave him some meds to take i don't know the name but it didn't help talk to the doctor about the hiccups. It was hard to watch him trying to sleep and he is hiccuping.

michelle

concernedgal
Posts: 33
Joined: Feb 2009

Hi everyone thought I would give an update on my brother.

He has his 2nd cycle on Thursday but was vomiting from the oxaplatin when he got home and couldn't eat.

He then had severe stomach pain and was taken into hospital on Saturday. Hes still being kept in. They did an x-ray and CT scan and thankfully they couldnt find anything so they think its severe constipation again as he hadn't been to the bathroom since Monday.

Hes on a morphine drip and getting fluids on a drip as he hasnt ate since Wednesday!

Hes really tired from lack of sleep and drowsy from the morphine. We are all worried about him. Also found out he is suitable for Erbitux but we're glad he didn't get it on Thursday or we would be thinking it was that which caused the sickness

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

I forgot about hiccups! I don't get them now w/ the chemo I'm on, but I definitely did when I was on the Folfox. The only thing I had then that I don't now was the Oxaliplatin, so maybe that's what caused it. Funny thing- like clockwork, every time I'd bite into a hamburger or any bread, I'd instantly start hiccuping! It was annoying, but it will be temporary. I mentioned it to my Dr. & he acted like he hadn't heard of that & said it probably wasn't related, but I know better, especially after you saying your brother gets them.

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Even though your brother had a bad bout of it, thank goodness they did not
find anything new wrong. Constipation can really be bad on oxiliplatin and
from pain meds. The chemo makes it worse because you don't feel like
drinking lots of fluids with the side effects from the oxy and that is part
of what keeps you from getting constipated is lots of fluids. Hoping the
docs are able to prescribe a good diet and medication so that won't happen
again. Exercise like walking also keeps away constipation but when you
are on chemo, sometimes you don't have enough energy.

Barbara

concernedgal
Posts: 33
Joined: Feb 2009

Hi

Thanks for the comments. I know we are so glad nothing showed up in the scans as my brother was sure something wasn't right and from his previous scans he has had nothing but bad news.

His oncologist will meet him tonight to discuss what the next step is to try and get him to eat. The constipation seems to be at the top of his stomach so an enema isnt possible and the drink sachets seem to be taking a while to work.

They may have to change his painkillers again as thats what seems to make the constipation worse. I haven't even seen him for 3 weeks as I was away and when I returned had a bad cold and he didnt want to catch it. Ive been warned I might get a fright when I see him as hes lost more weight

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Try to see if he will eat some chili...It is very good to someone that has nausea... I think that the spices overwhelm the nausea feeling and it is very palatible during oxaliplatin. it will also serve to get his bowels going quickly too... That is the very first thing I could eat after 4 days of constipation and 6 days of nausea. Cottage cheese and peaches at room temp was also edible for me....Good Luck and God Bless you

marmite
Posts: 5
Joined: Mar 2009

Hi,
I'm not sure if this topic is still active but I've just stumbled across it and would really like to chat to people.

I'm very sorry to hear about your brother. I am/was in a very similar position and I live in London. I'm treated at Charing Cross hospital in London which is excellent and may be worth contacting if you need help?

I was diagnosed with stage 4 colon cancer eighteen months ago when I was 31, after months of feeling unwell and being told by the Doctors it was just IBS. I don't know what my actual odds were, but I found out later my parents were told it was probably terminal and I know it was considered inoperable. Anyway, that was then.

I had three months of chemo - Oxaplatin, 5FU and cetuximab, which far exceeded their expectations in its success, and then I had bowel surgery and liver resection, also removing part of my ovary, 16 lymph nodes and some of my diaphram. I had three months of remission and then unfortunately the growths started in my lung again and I had another three months of chemo.

Everything you've all said sounds very familiar. I didn't want to eat, I lost about two stone in weight, I was in a lot of pain, dosed up on morphine and my whole life went into limbo. But I had fantastic family and friend and a loving fiance, who told me every day that we would get through this. Most days I believe I will. I'm planning my wedding and that's fabulous. Sometimes I wobble - a lot. And I'm scared right now as my markers have started to fluctuate again. I do think the research and treatments have progressed fantastically over the past few years and we shouldn't lose sight of that. But it's so scary.

Your success stories are so encouraging - thank you for sharing them. I hope I can stay as brave as you all.
x

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

You can and you will... and we all will be celebrating your upcoming wedding!! That is wonderful news... look how far you've come in this past 18 months!! Through surgeries, treatments, feeling like kaka, having no appetite, losing weight, eating again... and now you are planning your wedding... you are every bit as strong and brave as anyone else here on these boards!

Oh, the old fluctuating of the CEA markers... that can really drive the strongest of people into a tizzy. Likewise, when you have any of the scans done and you are waiting for the results... if it is like it is over here, sometimes you'll get the scan done one day and then you have to wait until your doctor gets the results. Again, depending on where you live, sometimes those results can be within a couple of hours, other times they are sent to your oncologist and you can't get them until you talk with the onc. Your mileage may vary.

Do pull up a stump and join the rest of us... make yourself at home!! :)

Hugggggs,

Cheryl

marmite
Posts: 5
Joined: Mar 2009

Thank you so much! This is the best site I've found.
Yes it's great to have something to look forward to so much and it's nice to be able to categorize myself as a bride to be rather than a cancer sufferer. When you're off work and at home so much, you kind of lose your identity.

It's pretty much the same here. I have a scan due in ten days time which is probably why I'm so jittery at the moment. The waiting is the worst thing - it's so hard to control those fears.

Is there any pattern to the fluctuating CEA markers, that anyone knows of or is it just totally random?

Thank you. x

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