One patient with glioblastoma still alive nine years later
by christine12 on Wed Aug 19, 2009 12:00 AM
My dad is fighting stage IV colon cancer with numerous mets to his liver. He has had 8 sessions of folfurie(spl) with avastin. Since he is considered inoperable, chemo is really the only thing they can do for him. We had his 2nd scan yesterday and the results are showing that the leasions in his liver are shinking and there is no new signs of the disease anywhere else. His CEA went form 360 to 17. My dad looks and feels good considering what he is going through...you would never think he is sick by looking at him. He has not even lost a pound of weight. I pray that it will stay like this.
My question is how long can he have chemo for. The doctor yesterday made is seem like after another 6 or 7 sessions of chemo they will stop and then just monitor him every 3 months...I was shocked...so they are just going to hope the cancer does not spread further....I was stunned but did not want to ask too many questions as my dad and mom were there and did not want to worry them. This is a leading cancer hospital in Toronto (Princess Margaret) so I assume they know what they are doing...her exact words were "well you know someone can't have Chemo forever"..."There is only so much the body can take" I realise that but I have never heard of stopping chemo if it is working and especially if there are no other options.
Any info would be appreciated.
by Mousey on Wed Aug 19, 2009 12:00 AM
Hi Christine, first of all I am really sorry your dad has this, it can be a tough disease to fight. My husband has the same, stage IV diagnosed last summer at age of 37, inoperable, numerous lesions to both sides of liver. He has had: * July 08 - Feb 09 Eloxatin (oxaliplatin) + Avastin + Xeloda with good results. Eloxatin dropped because of side effects* Feb - May Avastin + Xeloda, tumours started growing a bit so a change of regime* May up until now Camptosar + Erbitux + Xeloda with good results.
Tumours on left side of his liver have disappeared, tumours on the right side have decreased in size. CEA from 6300 (no spelling mistake there) to 40.
With current medicine (oxaliplatin, irinotecan, Avastin) many originally inoperable patients have become operable. Also surgery techniques and technology have improved and it is easier to operate on difficult cases. My husband will very probably never become operable but we have been told some patients have been on chemo for several years, even five, with breaks of course, as like you said body just cannot take poison for ever and ever. However, I guess this depends on the type of cancer (how aggressive etc), if the "upkeep" chemo can actually keep the situation stable or not. For some people just Xeloda can be enough to keep the tumours from growing, for others not.
So please google the web as much as you can and get educated about different cases and strategies, and if they are after folfuri trying to take your dad completely off chemo offering only checkup every three months do take a stand. However, may be that what they meant was that they would put your dad on such "upkeep" chemo, less chemo less frequently. I am not sure of all possibilities on this front. For example, some people have been getting only Avastin but there are studies that indicate that it is not enough if it is given alone.
I hope you managed to follow my train of thought, a bit too little sleep lately :)
All the best to your family to Toronto, Mousey
by Paula777 on Thu Aug 20, 2009 12:00 AM
First, let me say our prayers are with you and your husband. This is a tough diagnosis and it raises many questions. How long can a Stage IV patient stay on chemo? I've read stories where chemo can be tolerated for a very long time, one patient responded so well to chemo, she's lasted 6 years before her disease progressed. Clearly, with increasing survival rates (MD Anderson -- a top US cancer hospital -- in Texas) just released a study a few months back suggesting that 30% of Stage IV cancer patients treated there were alive 5 years later. This is not taking into account patients diagnosed today, however. Will these stats go up? I pray they will.
I'm likely somewhat unique here on this message board, in that myhusband is an American and has Stage IV colon cancer, but I'm Canadianand a 12 year Stage III kidney cancer survivor (I was living in Albertaat the time, but I'm a formerly from BC). On this message board you'll hear all about Avastin and Oxyplatian, etc. Check with Ontario's cancer center on what drugs are available in your province to treat colon cancer -- then check every other provinces' schedule of what therapies they'll provide.
Here's the scoop. The beauty of America's for profit system (which has its darker side in that some people are passed over while the rich live and have access to the best treatments available today) is that it is profitable for drug companies to get their drugs to market quickly... and as such, newer chemotherapies are available in the USA long before Health Canada decides whether or not to buy the such therapies en-mass (to keep public healthcare costs down, Canada buys drugs in bulk). Many chemotherapudic agents, like Avasitn, is not yet readily available in Canada simply because of the lag time between clinical trials and long term efficacy research (typically conducted in the USA) and Health Canada's decision to OK the purchase of the drug, again in large quantities. That's hurdle number one. Canada's public health care system, by necessity, it's too quick on the uptake of many of the "wonderdrugs" or "promissing breakthroughs" you'll read about on this message board, simply because most people on this board are from the USA (with a handful from UK, NZ and Australia and elsewhere).
Hurdle number two. Every province has a schedule of chemotherapies currently available. For example, in Alberta (this is from memory, as it's from an article I read in the Vancouver Sun a few months back) there are 18 chemotherapeudic drugs purchased by Alberta's provinical health authority for treating breast cancer -- this can be compared to 21 drugs available in British Columbia for the exact same cancer. So cancer care across Canada is not consistent. What does this mean? It means you may wish to research this "hidden aspect" of cancer care in Canada more closely. Check to see what's available in each Province for metastatic colon cancer. To keep your husband alive longer, does this mean you'll have to move your husband to another province to take advantage of another chemotherapy? If I'm reading this article in the Vancouver Sun correctly, that just MIGHT be the case.
My husband has Stage IV colon cancer. Tonight he's in emergency with a bad headache ... where I just left him and will return in a few hours after some much needed sleep ( Ha?!) Does he have a brain met? Is this a reaction to chemo? Is he simply dehydrated? I dunno.
But what I do know is we're in California and he has insurance (an HMO). He has been on Avastin, and I've heard on another board that Avastin isn't available yet in Canada for cancer. But I'm not 100% sure, so check with your doctors. And again, start checking with Ontario's cancer center on what drugs are available for colon cancer, and then weigh and compare what chemotherapies are available in other provinces. Luckily, Princess Margaret is one major Canuck hospital deeply involved in clinical trials. You may be in the best place to get your husband enrolled in a clincial trial?
And maybe your husband will qualify for a clinical trial in the USA? This I don't know about, as I've never researched this. Indeed, we're married and so my husband can legally participate in clinical trials in both Canada and the USA (we have our eye on one at MD Anderson on intraperitoneal carcinamatosis secondary to colon cancer... but if this headache is a brain met he's dealing with, we'll likely have to rethink the MD Anderson clinical trial.
Good luck in dealing with all this. You asked a question, and gee whiz, looks like I really likely threw you a real hard curve ball that will likely raise MANY more questions as you guide your husband along in his cancer journey.
Oops! Typo on paragraph 4 near the end. It should read:
Canada's public health care system, by necessity, it's NOT too quick on theuptake of many of the "wonderdrugs" or "promissing breakthroughs"you'll read about on this message board.
Add the "NOT".
Oops again... must be that I'm tired and have been in the ER far too long. I said "your husband' throughout. I meant to say, your Dad. Sorry about that.
by nolalady on Thu Aug 20, 2009 12:00 AM
I am a surviving Stage IV 68 year old patient. Your Dad is very lucky if they can finish the chemo treatment. I was diagnosed with Stage IV rectal cancer in July, 2007. I had the initial chemo with radiation, then rectal surgery. I was fortunate to not have a colostomy. This was followed by what was supposed to be 6 months of chemo, however, I could not do more than 2 months. It was stopped and I was monitored every three months. Six months later the lesions on the liver reappeared. At this point I did have a liver resection to be followed by the chemo with Avastin. Again, the chemo was too toxic and had to be discontinued after 4 treatments. I am now cancer free and being monitored every three months.
Your dad's body could not take more than the prescribed dosage of chemo. The doctor is right. You cannot take chemo forever, but they can monitor and it the cancer returns, then change types of chemo or possibly even sugery.
God Bless Your Family and Enjoy Every minute with your Dad
by Yaziza on Thu Aug 20, 2009 12:00 AM
by ImBrian on Thu Aug 20, 2009 12:00 AM
I was diagnosed with stage 4 CRC w/liver mets in 2005 and after 4 mos of chemo (8 sessions) and 2 surgeries, the chemo was stopped. My cancer was clearly in remission but I too asked about some additional chemo -- 'just to make sure'.
My oncologist was quite frank and reminded me that these drugs cause cancer and so if at all possible chemo will be stopped if the conditions look right. He took my case before a review committee just to be sure -- and they concurred that the chemo should be stopped and my condition monitored.
So far so good for me -- but I understand your concerns about what seems to be a decision to "stop the fight". By all means question your dad's doctor one-on-one to get more info for yourself.
Good luck to you and your father. You're in my prayers.
by christine12 on Fri Aug 21, 2009 12:00 AM
Thank you all for you well wishes and support. The thing is the cancer is not gone yet. The chemo is helping it shrink but because my dad has so many lessions it will take a while for them to be gone (this is the outcome I want) I often wonder if my dad really does have this thing as bad as they say it is. You would never ever think he is sick by looking at him. He still works every day even when he is with his Chemo bottle.......I guess I am just sooooooo lucky that I am not seeing him suffer with the side effects as of yet other then bad mouth soars.
Now that his CEA levels are lower I guess that means the cancer is not as stong....am I correct is saying this? I guess I am hoping that now that the cancer is not as stong the chemo will be able to kill it off faster! I am just hoping and thinking for the best.....anything to keep me thinking a postive outcome will come out of this.
by charm08max09 on Fri Aug 21, 2009 12:00 AM
On 8/21/2009 christine12 wrote:Thank you all for you well wishes and support. The thing is the cancer is not gone yet. The chemo is helping it shrink but because my dad has so many lessions it will take a while for them to be gone (this is the outcome I want) I often wonder if my dad really does have this thing as bad as they say it is. You would never ever think he is sick by looking at him. He still works every day even when he is with his Chemo bottle.......I guess I am just sooooooo lucky that I am not seeing him suffer with the side effects as of yet other then bad mouth soars. Now that his CEA levels are lower I guess that means the cancer is not as stong....am I correct is saying this? I guess I am hoping that now that the cancer is not as stong the chemo will be able to kill it off faster! I am just hoping and thinking for the best.....anything to keep me thinking a postive outcome will come out of this. Christine
The # of Avastin treatments the Ontario Government will sponser is 16. Only if you are stable or have shrinkage. If you progress you do not have Avastin again. Not like the US where I read on this board chemo's are changed but the avastin is still used.
There has been petitons and the ombiance (spelling) is investigating the 16 treatment cap on avastin. I personnally have been interviewed in our local paper and the ombiance saw the article and called me. As well I have called the MPP. There is alot of pressure on the avastin 16 cap treatment being lifted. But how long will Ontario screw us around who knows. Best to get as many of the treatments before the cancer starts to progress and you don't qualify for anymore.
Your dad has had 8 treatments. By rights your dad is entitled to 8 more treatments. Maybe your doctor is letting him have a break and then will continue the 8 treatments that he has left. Start asking questions. And insist on a PET scan and MRI if they have not done them yet. Of course PET scans in Ontario are only on trials still but you can insist your doctor apply for one. (or spend $2400 at a private clinic) It shouldn't be too difficult to get approved it just takes red tape -- 1st they send an application -- then they have to fill out forms and then if the gov still won't approve then your doctor should say I have a patient that needs a PET scan and have to send him out of province (Roswell Buffalo)--and our gov has to pick up the tab -- next thing you know you are approved for a PET scan. MRI's and PET scans are much clearer than a CAT scan. The PET scan is nuclear and shows what's happening in all your tissues and an MRI is so much clearer -- don't buy their bull about CAT scans show it all.
I am in 4th stage colon cancer -- after a resection in Jan/07 and 24 weeks of chemo (a trials study of erbitux/oxilplatin/folfox) my cat scan in aug/07 showed no cancer. And a clean colonoscopy. In Feb/08 my cat scan again showed no cancer. And a CEA of .6 But in Aug/08 it showed a 3.3cm tumor in my omentum just left of the naval. But cancer no where else. And still a .6 CEA level. ( I guess CEA levels don't work for me) I was told chemotherapy was to be ongoing until the cancer progressed and then they would look at other trials studies - in other words there was no real break in site. I started Avastin/irroteacan/folfiri after 7 treatments (Jan 30/09 the tumor had shrunk a cm now 2.3 cm - then I was told the gov requires a cat scan at 12 treatments and if it has shrunk or stayed the same I could continue the treatment. In Apr/09 the 12th teatment showed no change - I was hoping for more shrinkage. Then I'm told that I qualified for 4 more treatments of the Avastin as the gov will only sponser 16 treatments whether it is working or not. Then it is $2500 a treatment. Some benefit companies pay for it. My husband's used to but don't anymore - fortunately they have allowed me 6 treatments. I have contacted the drug access facility as Roache will pitch in afew $ - talk to your Dr. about these things.
After 15 treatments we decided to go for surgery to remove the omentum as it was not showing anywhere else and it was only 2.3 cm So May 25th was my last treatment as you have to be off avastin for 6 weeks or more before any surgery. As it takes very long to heal. Fortunately my oncologist surgeon who is the head of all abdominal surgery in the region of the Jurivinski Cancer Centre in Hamilton Ontario arranged a PET scan which showed 1 hot spot so small they checked the slide many times. The abdominal/pelvic specialist and my surgeon decided on an MRI and Bone Scan and in the abdominal cavity there are tiny specs of cancer cells just hanging out waiting to latch onto something but no tumors are showing. Apparently I have a slow growing cancer (we shall see) Now I am going to Roswell Park Cancer Centre in Buffalo next week to go over my up and coming major major surgery. I got an Ont. gov grant and it was approved in 3 days (do you believe it) The surgery is called peritoneal chemoperfusion. Look that up on the web. I asked for PET and MRI last winter but was told the CAT scan was just as clear. I have no complaints I have had excellant care and all my doctors have been at a Best Doctor's level. I am happy she didn't tell me about the 16 avastin treatment cap. I would of been stressed out the whole time I was going through treatment. The irroteacan and folfuri would continue when all the avastin was used up. Chemotherapy is going to be a part of my life but yes I assume there will be breaks. I have had 3 months off it and feel great - have been having the time of my life. I too had few side affects from chemo and swam everyday except the days that I had the chemo bottle on. No one could believe I was sick. Not even me just the 3 chemo days every 2 weeks. All my treatment has been at the Jurivinski Cancer Centre In Hamilton Ontario.
It's a hard road but the more you learn (surfing the web is amazing) and the more you demand from the doctors will give you peace of mind. I'm 55 with a loving husband and 3 young adults (22, 20 & 20)
All my prayers are coming your way for your father's recovery and strength for all your family.
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