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Madre's picture
Madre
Posts: 124
Joined: Apr 2008

I've been off the site for a while and although it's nice to see new people it just means we all have the same reason for being here. Well, wlecome everyone new, and "hey" to all the vetrans. I finished chemo on Oct. 22, 2008 and went back to work on Nov. 3, 2008. I was doing really good, got tired by the end of the week but it sure felt good to get back in the groove. The economic struggle hit my place of work and on Friday Jan. 30 my job was downsized..."rightsized" as they put it...to part time. Yes I still have a job (from 40hr/wk to 20hrs/wk) but my benefits ended at midnight Jan31. thank God my husband's HR people were there and they could switch us. We had 5 hours to find new insurance. In NY State if you lapse in your coverage the new company can deny "pre existing" condition. I've put my resume out there and have realized that even though I have loyalty to my job, they don't for me. Today my harddrive at work crashed and I lost all my spread sheets and forms. Oh well. My friend said "a sign it's time to move on". On a good note, my oncologist said that after treatment I would see him every 3 months for a year, then every 6 months for 2 years then once a year. Well, I had scans in December ... NORMAL...and I saw him in January (same day my job was rightsized) and all blood work is NORMAL. I don't have to go back to him till June!!! He says I'm fine. I love those words, I go to the surgeon in March and 1 year colonoscopy in April. But, I'm fine. Music to my ears. Thanks for letting me babble. I was reading some of the posting outloud to my husband and my son said "are they your friends" and I said "Yes, all the people on this site are my friends...I only know them by name and picture" but I share your joys and you heartaches. We are all in this together. Thanks again.

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

As life normally comes to us! The news on your health front is so wonderful! I know you are feeling better and ready to move into your new normal. That sucks about the "rightsizing" and I am sure you will always wonder if you weren't chosen to be rightsized due to your cancer experience. Glad to hear you were able to get coverage through your husband; hey, according to Obama fans (don't get me wrong, while I am a Republican and didn't vote for him, I don't doubt that he can make some serious changes that are badly needed), the whole health insurance issue will be resolved soon! ;). I was talking to a friend the other day about the number of new people on this forum. You are right, as nice as it is to meet new people, it's always a bummer to find new people entering this battle... and there was such a flurry of new people it seemed all at once! They keep saying that the numbers are looking better, that fewer people are being diagnosed with it due to better screening, and people that are diagnosed with it are seeing a better outcome due to new treatments, but basically due to finding it at earlier stages which we all have to admit make this beast a slightly gentler foe. However, I also read recently that we are seeing an INCREASE in the number of people being diagnosed with rectal/anal cancer. Wonder why this is? I just hope to see new, more promising, treatment options in the very near future and some headway on changing people's minds about this being an old person's disease.
mary

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Dearest Madre....I enjoyed reading your post so much. although I have been fighting the beast since 2005, I am a relative newcomer here and have found a good solid source of support. My husband was laid off his job in January and we lost our health care drug benefits. The Canadian sysytem pays for some drugs but my xeloda is not funded so nearly $800.00 every three weeks, we are scrambling for alternatives too.

The director of public health in our town was quoted in the newspaper last week on colorectal cancer.....50% of cases could be solved by life style changes. Those figures may be true but they make me squirmy...I swear I ate beans, lentils and mountains of leafy greens every day of my life....the beast didn't care. It is surprising to me to see younger and younger people appearing here....heart-breaking in fact. Mary there does seem to be an increase....our town was listed as 10% higher in colorectal than the national average. I don't know why????

The sun has actually appeared here today and it is NOT snowing....all good things come to those who wait....maybe even spring!!

Best hugs to all,
mags

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

What you said summed up my feelings exactly! It's all fine and dandy for the "experts" and the "directors" to quote 50%k of cases could be solved by life style changes... but hello??? Like you say, you ate what these experts claim is a healthy diet, and if I recall you have said you enjoyed exercise and getting out and about. Myself, I claim to be more on the "sedentary" side when it comes to exercise, but I read the article that Greg posted in another post that describes the necessary exercise and describes that exercise and I fell into that category and then some... so my idea of sedentary may be different than say that of a couch potato. Stairs? I don't have an elevator in my building so on average I do 50-75 stairs/day... on laundry days, up to 175 stairs/day. Unfortunately, because of pain, I do those same stairs but much slower since my joints don't bend the way they are suppose to... but I still do them.

If we were all to put post our meal/diet plans and daily exercise, I bet the majority of folk on this board are considered active. Maybe not athletic, running marathons or into sports competition, but we are active... so just what is it they want us to change since they are quoting 50% of colorectal cases could be solved by lifestyle changes?? Again... statistics are just that... statistics! It's so easy to throw out statistics... then you get family and friends pointing the finger and saying, "You should change your lifestyle... I read it in the paper. The director of Public Health said this and why would he lie??" Lie? He may not be lying but there's a good chance he's a government employee and he was told by someone who told him, etc. and he really does not know what he's talking about. Statistics mean nothing to me... I want to see what 50% of people he's talking about and what is their current lifestyle that needs changing, rather than a blanket statement that basically tries to put the blame for this disease on the patient. We here in this small group know people who have a fabulous healthy lifestyle and they still got the disease. We know young people as well as older people, rich as well as poor. There is no way we can group the whole lot of us together and say we all have a lifestyle that needs changing... hence it is our lifestyle that caused us to have this cancer.

Now... as for your xeloda payments. That particular med is one of those ones that falls between the cracks. I know my extended health denied payment and it was not one of the ones that the Cancer Agency covered since it is not an infusion or on a trial, or some such explanation. I ended up calling my HR person for my employer who got in touch with my Extended Health and gave them the approval to go ahead and cover it... so that got paid while I was on radiation and needed the oral chemo. Had I not had this particular coverage... I think there were some hoops one had to go through but if you get in touch with the Cancer Agency and tell them you can't afford it, they can find a way for payment. I'm not sure what the Cancer Agency is called in Ontario... here in BC it's the BC Cancer Agency and Research. There's also the Canadian Cancer Agency... surely they could direct you to where to apply?

I'll keep my ears and eyes open and if I find out anything, I'll pass it on to you!

Huggggggs,

Cheryl

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Hi there Cheryl....there is a provincial fund here called Trillium....you can apply for aid with drug benefits....it is a deductible system based on net income. I will apply for this as soon as I complete this year's income tax. Yes it is because the xeloda is not infused..that it is not covered....for 800 bucks i could whip up to the hospital twice a day and swollow the pills in front of them!!! instead we get to take it home a s a really fun recreational drug...lol....the oxy is fully funded because of infusion

thanks so much kiddo for the help!
I love yournew pic and seeing your sunshineyyy face
mags

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

Hi, Friend. *smiles*

I'm so glad all your tests show that things are FABULOUS.

I'm really sorry about the job, but hopefully this will be an opportunity to find something that will be a lovely new beginning for you.

*hugs*
Gail

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

The last i heard, colorectal cancer was no longer the number 2 cancer killer. It seems to me like more and more people are getting diagnosed, and younger and younger too. It's terrible! I have a close friend who is a chemist in a high profile pharmaceutical company and he's told me the new colorectal drug that is currently in trials is looking very, very good to possibly CURE this disease. The drug is still being revamped because one of the active ingredients gets metabolized too quickly to do it's job, but things are looking up for us. If this drug doesn't cure it, i have a feeling we're not too far off from a cure.

Many hugs!
Krista

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

That is really exciting news. Do you know what drug he is referring to and what kind of a time line? Was he speaking out of turn?
mary

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

and you know the best part about a cure......we have all been a part of being a participant in the ability to give them the samples and tissue to work with to get this far.......be very proud semi colons....we actually are going to keep people from traveling this path we travel someday and we can look back and smile and say.....I helped do that....God Bless all of you for your donations to the fight for a cure which will inevitably happen some day....

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

My friend says the drug doesn't have a name yet, but he's watching it very closely. They're working on a breast cancer drug too, but it's the colorectal drug that is looking very promising. I quiz him about it every time i talk to him, so i will let everyone know more about it as soon as i know. All i know at the moment is that it was used orally and they have been trying to get it into IV form so it will be more affordable. It is metabolized too quickly to work that way, and they are trying to fix it now. I have no doubt they will be able to fix it.

Many hugs and a wonderful weekend!
Krista

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

Wow, Krista... this news of yours requires a topic all of it's own!! When you hear more news... or just ongoing news, could you start a brand new topic so that it will be easy to find? What a fabulous bit of news to wake up to this morning!

Hahaha... oh, and not to hound your friend, but when you are next talking to him about it, find our if this drug is one that is being geared towards a specific stage of colorectal cancer, or if he thinks there might be benefits for everyone, including Stage IV.

It is news like this that gives us all the more reason to do whatever treatments we can to keep our cancer under control... so that when a drug like this becomes available, we are here to celebrate!! :D

Hugggggs,

Cheryl

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Krista,

I had good chuckle over your "number 2" cancer killer. I'll bet if more of us didn't have trouble going #2 we wouldn't be in the colon/rectal cancer pickle. tee hee.

I don't know about the rest of you, but i can look back on a life time of constipation--if we're not going for every meal eaten, we're constipated.

So yeah, I think we could be the "number 2" killer. :-)

peace, emily who's happy to have those #2s!

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

We are in this together and great news about the blood work and scans. My 4 month is coming up soon and I am getting "scanxiety". Love to see some bailout money go to cancer research instead of a road to drive there....oh well. Hope you find a great job and congrats!

Chip

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

Bet that since Obama"s mother died of cancer, we will get better support
for more reserach funding this time around. There are a couple of
Congressmen fighting it too. Sen. Arlen Spector has leukemia I think.
There is the American Cancer Society's Cancer Action Network that works
on the legislation/political end of things if anyone would be interested
in joining in the fight.......a little plug here, haha!

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