Survival rate still poor when osteosarcoma returns

[Mary]

This isn't a fun article to post, but I think there are a few things it can teach us. First of all, we need to be vigilant to watch for recurrence and also to attack it aggressively if we face it. We must seek surgery to get rid of all of it if this is possible. And we should expect to talk to the doctors about high-dose ifosfamide, which may help with survival.

I thought it was encouraging for those of us who are getting farther and farther from treatment that our survival chances increase if we have recurrence later rather than sooner. Hey, I'll take whatever encouragement I can dig up in an article like this!

But the other interesting note is that they aren't sure if chemo helps nearly as much as a successful surgery when dealing with recurrence. It would be interesting if this study shows us which people achieved remission with surgery alone. I wonder if they are folks like Allan, who agreed to an amputation but did not have further chemo. It seems to me that survival without chemo would be more likely if the recurrence was in a limb as opposed to the lungs. And I wonder if any of these patients were those like Karen, who had low grade osteosarcoma which has spread but is stable and less threatening. I hope to get a copy of the complete article eventually!

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NEW YORK (Reuters Health) - Although as many as 70 percent of patients who have the localized stage of the bone cancer osteosarcoma survive after surgery and chemotherapy, the overall survival rate after recurrence is less than 30 percent, researchers report.

However, lead investigator Dr. Paul A. Meyers told Reuters Health, "the chances of survival are better for patients whose recurrence is detected after a longer interval from the completion of initial therapy and for patients whose recurrence is limited to fewer sites."

Meyers of Memorial Sloan-Kettering Cancer Center and colleagues examined data on patients who achieved complete remission and those who were treated for a first recurrence at that institution after 1990.

Of 43 eligible patients, the average time from diagnosis to recurrence was 22 months, the team reports in medical journal Cancer. Recurrence was in the lungs in 33 of the patients. At an average follow-up of 15 months, only 15 (35 percent) of the patients were still alive.

None of the 8 patients who underwent only chemotherapy survived, while 3 of the 4 who underwent only surgery survived. Of the 31 treated with surgery and chemotherapy, 22 achieved a second complete remission. Of these patients, 9 (29 percent) were alive and in remission at the time of the last follow-up.

A cure is never achieved without complete surgical removal of the recurrent cancer at all detectable sites, Meyers noted.

"The probability for long-term disease-free survival," he added, "may be enhanced by the use of high-dose ifosfamide" after surgery. However, he and his colleagues conclude, "In the end, the role of chemotherapy in recurrent osteosarcoma continues to remain undefined."

SOURCE: Cancer, November 15, 2005.

[Cathy]

Mary,

This is the thing that scares the hell out of me.  But, I'm taking the approach that the NED on my chart now, l8 months out, is the thing that will keep me alive; that and the negative margins I had after the extreme surgery I had to have.  God please help us.

[Jimmy]

Yeah you try not to live every day thinking about the cancer returning, but I almost have an expectation that it will return some day and that I may not be as lucky if it does. Oh well... I'm just glad that I am here right now! I'll deal with things one step at a time if they return. Make the good times better and live it up NOW!

[Allan]

Interesting article. For those of you who are worried or scared of a reoccurrence don't let this control your life it may or may not happen. I survived the reoccurrence and have been clear for 12 years plus. If it does return remember you killed the dragon once you can kill it again.

[Arlene]

I think about it way to much. It sometimes controls my life. I wish I could just move on and not always be worried. I have been on antidepresents for too long. Too many pills, too many doctor appointments. How can I forget for a day. It hurts so bad. All I do is think, think, think, Its really sucks.
Stay well all, Arlene

[Mary]

Arelene, I have been dealt with a lot of depression in my life, so I can relate to that overwhlemed feeling. But my depression tends to be about what is now instead of about what might happen.

I just read this today:

Vickie is a patient who awoke every morning thinking "Today might be the day it comes back." Having completed treatment for a disease with a high rate of recurrence, she withdrew from friends and activities, convinced she'd soon be sick again. After seven years of living like a hermit, she awoke one morning to the terrible realization: "I've been healthy all this time, and I missed it."

-Happiness in a Storm

The more I read, the more I realize that many patients with parosteal osteosarcoma get recurrence, more than the statistics show. I have come to accept that it will probably happen at some point, especially since I never had chemotherapy like so many sarcoma patients. I read the research because I would rather know than be blindsided. But, the more I realize that the cancer may return, the more meaningful I want my life to be now. The more I want to love and enjoy and live each day.

Wouldn't it be awful to have a recurrence one day and to realize that you spent all of your healthy years worried? I'm not saying that it's easy to fight worry, but please don't give up on finding more freedom from worry.

As strange as this sounds, one of the biggest thing that frees me from worry when it spins out of control is the knowledge that we will all die anyway. Maybe I won't live as long as most, but that just makes me want to live twice as much in whatever time I have. The cancer has already taken a lot from my life, I don't want to let the possibility of it returning steal the rest of my life!

When it all comes down to it, this puts it into perspective: "Who of you by worrying can add a single hour to his life?" Whatever will be will be. So what will I do with today?

Wishing you peace,

[Arlene]

Mary, I try so hard each day but I'm always faced with my calender which is part of the day or upcoming appoinments. Its always something. If its not planning for an ultrasound, its 3 month followups with ct scans of the lungs and then ive got the 3 month follow ups on the leg with xrays. Then we have the breast MRI coming up. Now another problem with the Kidneys. Who knows about that? It just stinks. Now on my inbetween days have go to fitness to work on this stiff leg. Its just hard to enjoy the day when there's alway the day after. Its just real scary for me. See, I dont have many or any beliefs, so i hate having death cross my mind. Im am too afraid.
HUGS TO YOU MARY. AND MAY GOD BLESS US ALL (I GUESS)

[Jeanne_C]

It's the strangest thing.  A few months ago I never even thought about reoccurances.  All I could think about was getting treatment over and done with.  Now, as the end of treatment gets closer and closer, I worry more and more about what's going to happen afterwards.  I've been obsessing about the spot on my lung from the initial CT scan.  I've asked about it several times and the DR just says "It's too small to worry about."  Well, I worry about it.  I had a CT scan just before surgery in June.  All they would say initally was "It's fine."  Well what the hell does that mean?!!?!!  I had to get forceful about it this last visit and they said "Oh, it was gone on the June scan."  Now why didn't they say that in the first place?  I suppose I should have asked sooner, but I was just too wrapped up in getting through everything that I didn't even think about it at first.  And, for some strange reason, I can't seem to be happy about it being gone....I can only think "what was it?" and there is no answer for that.  Definitely needing some attitude adjustment here.....and no bacon or beer in sight!!!   

[Karen_P]

I never really thought about reoccurences. I figured once it was gone it is gone.If they took enough out with the margins, I would think it can't come back. Or maybe I didn't want to think about it. I know they were watching my lungs but sometimes I look over things. Now remember I also thought the prostethesis would last forever. Mary thanks for  the information. I am going to return to the treadmill and pilates(what I can do of it). Diet and exercise is very important generally but especially when you have had cancer before. I loved pilates before I just got lazy. I have reading alot about the way you eat. I am trying to be good.
blessings,
Karen P

[Michelle]

Hi Arlene,

Your post really struck me.  You mentioned not really having any beliefs. 

I wonder if you are (without even knowing it) being prompted to look into that.  I am not saying what direction that may lead you or I dont even really know what you may have already have looked into!  There are a ton of studies out there linking the spiritual and the physical.  I mean who knows, maybe a comparative religion course might be interesting? 

Michelle

[Arlene]

Michelle, I grew up in a very large jewish family. back then it was way to much $$$$ for my parents to put us thru any type of religious schooling. Ive seen too many things happen without a reason. For instance, my husband passed at the age of 40. A sudden heart attack. He was strong and healthy. I ask why? I really wish I had some kind of beleif. I have truely tried but I just cant. To me, its black and white. My friend is coming over tomorrow and shes asked me to go to her church just to sit around with a bunch of ladys and chat. I think I will try. It stinks feeling the way i do. My son is the same way. He saw his dad taken from him for what reason??? we ask why? 6 months later, breast cancer. 2 years later, bone cancer, and then skin. I ask why. I could write you a book. But one thing I do belief is "SOMEONE" is keeping me safe and strong. But Who?
To You, Chris and your family, Stay Well, Arlene
 

[Cathy]

Arlene,

I feel for you.  You have every right to feel depressed and confused.  You have been through so many things that would make you feel the way you do!  I relate always to the things you write about.  I hope you'll let us be that "thing" that you can believe in, until you find something/someone that feels right (and then continuing on with us).

I just got my jug for the decreased kidney function, "24 hour creatine clearance" test to do.  I hate it.  Does it mean my kidneys are damaged from Cisplatin, is the cancer back, I feel like you do.  "Is there a recurrence?"  I thought I had moved beyond being "on guard" all of the time, but this pops up and I can't help it.  I'm scheduled in 4 weeks to see my ortho/onc for the full body CT scan and I always get squirely for that - well now I can be double squirely.

So, Arlene, you are not alone in your depression and anxiety.  I just have to put it into compartments in my brain or it is all I would be.  With meds I am other things too - happy at times, cheerful, funny, compassionate, and so on.   I have a feeling so are you - you certainly appear to be not all black and white.  Don't be so hard on yourself.  You are amongst friends.

Always,

[Arlene]

Cathy, Today  I got an email back from my oncoligist. I had questioned him about the cisplatin. Wasnt sure if I had it but he said I did. I told him about the kidney problem. His response was...yes cisplatin and ifosimate Can be tough on the kidneys but it would have shown after therpy which for me was oct. 2004. My last kdney funtion taken at the hospital was june 2005. The # was 1.4. He said that was high but high on the normal range. He said different labs have their own ranges. I spoke to 2 doctors at mass general(boston) and they both agreed with the range being a high normal. He mention though that it could effect your pottasium and magnesuim having to work harder. I did have a problem with my potassium being low and was on meds for awhile. Right now im off the potassium meds but my range stays normal but on the low range. My pcp does not want to put me back on them because I remember him also saying it could effect the kidneys. Anyways , just thought id fill you in with this. I think I remeber you bringing up once about your pottasium level but I could be mistaken. Maybe you can mention that to your doctor. I think of my doctor as my savior and he has been one of the top drs. for ongoligy on sarcomas. If u would like to see the email, i can send it if u let me know your email address.
Stay well, Arlene
ps. your earlier reply was comforting.

[Cathy]

Arlene,

The docs have never mentioned anything about my kidney function post chemo until now.  DURING chemo, my kidneys actually shut down, so I'm sure it's not a surprise that I'm having some problems with them.  I did take K+ (potassium and Mg supplements) right after chemo for about a year, but stopped when the range was normal.  I got my urine jug and will start the 24 hour creatine clearance lab on Sunday and turn it in on Monday.  What a pain in the ---.  But, if it gives them the info they need, I'll have to put up with the inconvenience.  It will also measure the protein the kidneys puts out.  My diagnosis is officially; decreased kidney function.  So, let's keep our fingers crossed.

[Michelle]

Hey Arlene,

I just read your reply above.  I hear so much pain in your post that I just want to reach out and give you a hug!!!  You are absolutely right in many of your assessments---and I know only too well that life is surely not fair.  Children die, parents die, there is starvation and horrible tragic things that go on in this world for no apparent reason!!!   That is kind of why I suggested a comparative religions course.  Not all religions believe in a Higher Power.....(I dont know enough about Buddhism or Scientology or those types of denominations---but I know that they exist).  I know some Jews find Kabbalah very enlightening....I also took a course once from a Rabbi who quite clearly talked of a sect of Jews that absolutley do not believe in a personal God.  (Who knew?)

I believe that one can be spiritual without necessarily believing in a Higher Power.  I am just saying that there may be avenues to look into that you have not thought of.....(of course, maybe you HAVE thought of them and I am just a wet noodle!)

I would be not doing my job as a Christian if I didnt at least make some little plug for God....but the reality is that, from what you have said, I dont think your in that place at this point.  Getting healthy spiritually, in my opinion, doesnt always mean that we need to believe just the way 'everyone else' does.....

There is a very old Poem out there call the Hound of Heaven.  If there is a God----it is he/she/it that will pursue you....belief  or not. 

Just some thoughts.  Please don't be offended.
Michelle

[Arlene]

Cathy, what do u mean.....decreased kidney funtion? Are you done with all the testing?
hope you are good to go!
stay well, Arlene

[Arlene]

To All Of You That Have Replied......Thanks So Much .For Someone Who Has never Met You Guys, You Seem To Be Some Of My Closest Freinds.
Stay Well, Arlene

[Jeanne_C]

Arlene,

I don't know how helpful this will be, but I have recently found if I set aside some time for some controlled breathing exercises and simple meditation I feel less stress and anxiety.  Certainty of a higher power is not required.  I've been using a very simple chant, "peace, love, light", and the more I practice this, the results have been more and more relaxing for me.  Fear of the cancer coming back is still there, but I feel more in control of my fear....does that make sense?  I think different ways work for different people.