Drat! High Risk!
I was counting on being low-risk, but I just found out today that I am high-risk. Poop.
See, I figured if they said I was low risk then I could be part of the control group, which is no chemo, and feel good about it. But at age 49 and now being told I am high risk for recurrence because of certain aspects of my tumor, it changes things. Confusion has set in big time.
I don't want to do chemo, that's for sure. But then this study could be an important step forward. Perhaps after this 10-year-study is concluded they will have further defined who definitely should have chemo with Stage II cancer with no lymph nodes involved. Or it could be a bust and they still find that 10 out of 100 people with this stage of cancer still die of the disease within 5 years. Then again, perhaps they'll find that when you have a high-risk tumor and do the chemo, only 2 out of 100 will die. That's the problem. The study isn't concluded so you just don't know.
OK. Personally, I would consider the chemo for one reason alone: my 13-year-old son. I also have a wonderful husband, 21-year-old twin sons (one of whom is going to Iraq very soon), and a 19-year old daughter. Yes, if my cancer recurrs and I die, it would be hard on all of them. But right now the 13-year-old is my main concern. I feel I need to be alive 10 years from now for his sake.
I know you all can't tell me what to do, nobody can. But it would help me to hear your thoughts. I still intend to see a naturopathic doc who can help me boost my immune system (whether I do chemo or not). I still intend to continue making lifestyle changes that include more raw fruits and veggies, less red meat, and regular exercise (whether I do chemo or not).
I still intend to survive, one way or another. It's just the realist in me that keeps harping on this "what if" thing.
Right now I feel like I have chemo brain even though it hasn't started. Oh, yeah, I will go in a week from today to have blood work and have the port installed, and take my first chemo on Sept. 1 over the holiday weekend. Then six months of it and, possibly, six more months of Avastin after that depending on which chemo group I would randomly be placed into.
Help! Somebody give me the name of a good genie (preferably somebody who know NED!).
Comments
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Oh, my dear...I'm sorry to hear of the 'high risk', but I go back to my reply and saying how proud of you I am for helping with research! I was in my rad/onc's office the other day, and saw a posting of all the current clinical trials. I proudly pointed out YOUR trial to him and said "I personally know a pioneer who is IN this trial"....he was impressed!
Hugs, and YOU GO GIRL!
Kathi0 -
Also, look on the bright side.....it MAY be like the Herceptin trial for Breast Cancer....after 1/2 of the time, the trial was stopped because...KathiM said:Oh, my dear...I'm sorry to hear of the 'high risk', but I go back to my reply and saying how proud of you I am for helping with research! I was in my rad/onc's office the other day, and saw a posting of all the current clinical trials. I proudly pointed out YOUR trial to him and said "I personally know a pioneer who is IN this trial"....he was impressed!
Hugs, and YOU GO GIRL!
Kathi
IT WAS WORKING SO WELL!!!!!!!
Hugs again, whatever your choice....I have had chemo (no choice...Stage III) but have ALSO changed my diet/lifestyle....I DON'T want to give any of those 'dust bunnies' a foothold....
Kathi (again, hanging with NED for BOTH cancers...)0 -
Kathi, I know I can always count on you for that silver lining. Wouldn't it be absolutely the best if they did the study and stopped it mid-study cuz it worked so well? If I decide to go into it, I'll go in full force and with that thought always present in my mind. Thanks!KathiM said:Also, look on the bright side.....it MAY be like the Herceptin trial for Breast Cancer....after 1/2 of the time, the trial was stopped because...
IT WAS WORKING SO WELL!!!!!!!
Hugs again, whatever your choice....I have had chemo (no choice...Stage III) but have ALSO changed my diet/lifestyle....I DON'T want to give any of those 'dust bunnies' a foothold....
Kathi (again, hanging with NED for BOTH cancers...)0 -
It's a difficult decision and irregardless the diet changes will be important in lessening the chance of recurrance. I was told I had a higher risk of recurrance and have completed 4 cycles of Folfox/Avastin. It isn't pleasant but isn't the worst thing as well. Still able to work, fulltime on the off week and part time the week of chemo.
Good luck and God Bless. Remember-there is no wrong decision.
****0 -
Sounds to me like you are leaning towards the chemo. You will always wonder whether or not you have made the right decision, but if this is truly the way you decide to go, you can always count on your friends on this site to help get you through it. As many have said, the chemo isn't the most pleasant thing, but it's not like some of the chemos used to treat other forms of cancer. Good luck, whatever you decide.
God bless,
-Lee-0 -
Hi Patrusha -
Sorry for the high risk classification. Chemo for Stage II is a very personal decision (I was Stage IV, so little choice.) So I know you have a difficult choice.
Try to think positively. While the "high risk" classification is scary, because of your participation in this study, you actually know more about your disease than do most patients. With that in mind and a 13-year old whom you still need to parent, if I were you I would go with the chemo. With any luck it won't be too bad. Do you know what drugs they want to give you for the first go-round? If it is followed up with a second 6 months of Avastin, know that for most patients, Avastin is mostly without side effects. With any luck you will be in the no side effect group.
Take care and good luck with your decision.
Betsy0 -
Hi Betsy.... Both "Arms" will be given Oxipilatin, Luecovoran (sp?) and FU every other week for six months. In addition, Arm "B" will be given the Avastin during the treatment as well as for six months (every other week) after. The Avastin they are using is the test drug. It is not exactly the same as the commercial drug now in use, but it is considered the same as far as safety and side effects.Betsydoglover said:Hi Patrusha -
Sorry for the high risk classification. Chemo for Stage II is a very personal decision (I was Stage IV, so little choice.) So I know you have a difficult choice.
Try to think positively. While the "high risk" classification is scary, because of your participation in this study, you actually know more about your disease than do most patients. With that in mind and a 13-year old whom you still need to parent, if I were you I would go with the chemo. With any luck it won't be too bad. Do you know what drugs they want to give you for the first go-round? If it is followed up with a second 6 months of Avastin, know that for most patients, Avastin is mostly without side effects. With any luck you will be in the no side effect group.
Take care and good luck with your decision.
Betsy
Am I gonna lose my hair? The docs say to expect some thinning, but wouldn't say if I would lose it all or not.0 -
****,vinny3 said:It's a difficult decision and irregardless the diet changes will be important in lessening the chance of recurrance. I was told I had a higher risk of recurrance and have completed 4 cycles of Folfox/Avastin. It isn't pleasant but isn't the worst thing as well. Still able to work, fulltime on the off week and part time the week of chemo.
Good luck and God Bless. Remember-there is no wrong decision.
****
The part-time thing scares me. I used up all of my vacation and personal time to be off for surgery. Now I have nothing to use on those days I might not feel up to coming in. I don't know how my employer is going to handle that one.0 -
Hey Lee,pink05 said:Sounds to me like you are leaning towards the chemo. You will always wonder whether or not you have made the right decision, but if this is truly the way you decide to go, you can always count on your friends on this site to help get you through it. As many have said, the chemo isn't the most pleasant thing, but it's not like some of the chemos used to treat other forms of cancer. Good luck, whatever you decide.
God bless,
-Lee-
Actually I AM leading toward chemo... at least today!!! LOL!!!! Tomorrow might be something altogether different! But it is nice to know I'll have support from you guys whatever I choose. Good point about always wondering about whether we make the right decision. No matter what I decide I'll probably second-guess myself somewhere along the line.0 -
I didn't lose my hair but it did thin. The chemo wasn't too bad and only lasts about 6 mo. Why are you not getting your chemo through your port? Let us know what you decide. jamsPatrusha said:Hi Betsy.... Both "Arms" will be given Oxipilatin, Luecovoran (sp?) and FU every other week for six months. In addition, Arm "B" will be given the Avastin during the treatment as well as for six months (every other week) after. The Avastin they are using is the test drug. It is not exactly the same as the commercial drug now in use, but it is considered the same as far as safety and side effects.
Am I gonna lose my hair? The docs say to expect some thinning, but wouldn't say if I would lose it all or not.0 -
Sorry to hear that you are considered "high risk". Although I am not the one receiving chemo (hubby is)I wanted you to know much we appreciate people willing to participate in clinical trials. Without people being willing, no new drugs would ever be tested properly.
I understand your caution about taking chemo, however, if your cancer returns you would certainly be facing chemo. Participation in this trail very possibly could prevent your ever having to face that day.
My husband had been on the drugs you mention including Avastin. He is stage 4 and had the six months course. The cancer is now back and he is facing another six months. He did not lose all his hair with the chemo but it did thin. Once off the treatment the hair came back. What ever you decide to do, make peace with the decison. I am sure each one fighting this disease tells themself "what if I had done something differently". You sound as though you have a strong inner strength. May your decision and fight for a future with you lovely family. You will make the right decision.
Keep us informed.
Betty0 -
jams, all of the drugs will be given through a port. I would get the port implanted next Friday with the first round set for Sept. 1.jams67 said:I didn't lose my hair but it did thin. The chemo wasn't too bad and only lasts about 6 mo. Why are you not getting your chemo through your port? Let us know what you decide. jams
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Thanks, Betty. I know I could possibly help others by participating in this trial. That is one of the pluses. Selfish as it sounds, though, I might not help myself and, in fact, might harm myself. That is the whole thing. If I was stage III or IV, like your hubby, it would be a no-brainer for me. But sitting on the fence like this is crazy-making. I'm thinking of getting my hair cut short today, just in case I go through with the chemo.... that way I won't have to watch it all falling out all over the place...AuthorUnknown said:Sorry to hear that you are considered "high risk". Although I am not the one receiving chemo (hubby is)I wanted you to know much we appreciate people willing to participate in clinical trials. Without people being willing, no new drugs would ever be tested properly.
I understand your caution about taking chemo, however, if your cancer returns you would certainly be facing chemo. Participation in this trail very possibly could prevent your ever having to face that day.
My husband had been on the drugs you mention including Avastin. He is stage 4 and had the six months course. The cancer is now back and he is facing another six months. He did not lose all his hair with the chemo but it did thin. Once off the treatment the hair came back. What ever you decide to do, make peace with the decison. I am sure each one fighting this disease tells themself "what if I had done something differently". You sound as though you have a strong inner strength. May your decision and fight for a future with you lovely family. You will make the right decision.
Keep us informed.
Betty0 -
Patrusha,Patrusha said:Thanks, Betty. I know I could possibly help others by participating in this trial. That is one of the pluses. Selfish as it sounds, though, I might not help myself and, in fact, might harm myself. That is the whole thing. If I was stage III or IV, like your hubby, it would be a no-brainer for me. But sitting on the fence like this is crazy-making. I'm thinking of getting my hair cut short today, just in case I go through with the chemo.... that way I won't have to watch it all falling out all over the place...
About the hairloss thing: My dad was also concerned about this when he first began chemo. It's funny, because he doesn't have that much hair left anyway, but he wanted to preserve every little bit he had. Anyway, his hair did thin, but it's still there. That's another positive thing about chemo for colon cancer: You don't totally lose your hair. I have also known/heard of others who have gone through this same regimen and some haven't even had any thinning. I know how it is especially for women to lose their hair, but personally, I'm not sure if I wouldn't be as concerned with that side effect. Even if there was any thinning, it WILL grow back. Just a thought.
Take care,
-Lee-0 -
Hi Patrusha,
I am sorry for the late reply, I just read your note.
My opinion is: it is scary not do chemo but it is also scary to do chemo. My mother almost died from it. She is also II stage. Chemo also can cause secondary cancer, kidney failure, coma, etc. One can die from cancer and another can die from the complications after chemo.
Majority of people here probably would recommend chemo. But there are some who are against it - like scouty and 2bhealed. There are also some here who went through the suffering of chemo and it did not help them anyway - cancer has returned.
Very important to keep in mind: even with chemo cancer can return. So, why subject yourself to other dangers caused by chemo? In other words, one may not necessarily die from cancer but can die from chemo. Isn't it ironic?
I would try to do naturopathic methods. Please also get a book "Outsmart your cancer: Alternative non-toxic treatments that work" by Tanya Harter Pierce. I was specifically interested in protocel. Look at www.protocel.com.
Methods described in this book are in addition to what scouty and 2bhealed did. Read their stories. Scouty was in IV stage and was told that she would die and she stopped chemo and cured herself with natural methods!
Like 2bhealed said, cancer is the indication that something is really wrong and it needs to be treated from the bottom of it, where the root of the problem lies.
I would wait and investigate natural methods first before having port installed, etc.
Hope it helps. Good luck with whatever you decide.
Best wishes and God Bless.
Eleonora0 -
Well, I got it cut short anyway!!! I know it is likely that my hair will only thin out if I do the chemo, but my doctors have also said it can all fall out. I'm wondering if that depends on how fast your hair grows (and mine grows really, really fast!). I asked my hair dresser to rate my "head shape" for a baldie on a scale of 1-10 and she gives me a 5. I guess I kind of have a pointy head! LOL!!! So hopefully, if I do chemo, I won't lose it all and look like a bean head. LOL!!!pink05 said:Patrusha,
About the hairloss thing: My dad was also concerned about this when he first began chemo. It's funny, because he doesn't have that much hair left anyway, but he wanted to preserve every little bit he had. Anyway, his hair did thin, but it's still there. That's another positive thing about chemo for colon cancer: You don't totally lose your hair. I have also known/heard of others who have gone through this same regimen and some haven't even had any thinning. I know how it is especially for women to lose their hair, but personally, I'm not sure if I wouldn't be as concerned with that side effect. Even if there was any thinning, it WILL grow back. Just a thought.
Take care,
-Lee-
I also went with my daughter and we got our nails done (any problem wearing acrylics with chemo, anyone?) and then she waxed my eyebrows. Hey, I have to return to work on Monday. Might as well look my best, eh?
My daughter also works at a hair salon where they sell Nioxin, which they claim chemo patients rave about for saving their thinning hair. My hairdresser said it doesn't really work, but my daughter says there are clients who swear by it. Heck, if her manager gives it to me for free, I'll use it! LOL!! I'm always good for a freebie.0 -
I'll try to get a hold of that book, eleonora. I just don't know how much time I have in this window to make the decision...AuthorUnknown said:Hi Patrusha,
I am sorry for the late reply, I just read your note.
My opinion is: it is scary not do chemo but it is also scary to do chemo. My mother almost died from it. She is also II stage. Chemo also can cause secondary cancer, kidney failure, coma, etc. One can die from cancer and another can die from the complications after chemo.
Majority of people here probably would recommend chemo. But there are some who are against it - like scouty and 2bhealed. There are also some here who went through the suffering of chemo and it did not help them anyway - cancer has returned.
Very important to keep in mind: even with chemo cancer can return. So, why subject yourself to other dangers caused by chemo? In other words, one may not necessarily die from cancer but can die from chemo. Isn't it ironic?
I would try to do naturopathic methods. Please also get a book "Outsmart your cancer: Alternative non-toxic treatments that work" by Tanya Harter Pierce. I was specifically interested in protocel. Look at www.protocel.com.
Methods described in this book are in addition to what scouty and 2bhealed did. Read their stories. Scouty was in IV stage and was told that she would die and she stopped chemo and cured herself with natural methods!
Like 2bhealed said, cancer is the indication that something is really wrong and it needs to be treated from the bottom of it, where the root of the problem lies.
I would wait and investigate natural methods first before having port installed, etc.
Hope it helps. Good luck with whatever you decide.
Best wishes and God Bless.
Eleonora0 -
Patrusha,Patrusha said:I'll try to get a hold of that book, eleonora. I just don't know how much time I have in this window to make the decision...
You only have stage II. I don't think that postponing chemo for a couple of weeks would bring you harm.
Check out local libraries and bookstores. Also, you may want to post a message on this board with the subject line something like "For Scouty - please help" and same for 2bhealed. They will respond right away. Scouty was IV stage.
See naturopath, maybe there is oriental doctors in your areas. They are famous for treating cancer with natural methods.
This is what scouty posted about choosing a naturopath:
Looking for naturopathic doctor
First, I would go a step further and visit a local health food coop/store/supermarket and look in the front of the store (Whole Foods and Wild Oats are big chains). There will be a few free magazines that will have ads for all sorts of alternative practicioners, including NDs, etc. I'm not sure what the difference between ND and NMD is, seems the few I saw listed on the internet had some medical practice training also.
The main reason I am recommending picking up some local ads and also looking in your phone book (look at several listing!!!!be creative: like ND, alternative medicine, nutrition, are the first ones I can think of) is because the ND I found that has really helped me to stage IV NED statis was licensed in homeopathic and naturopathic medicine but was the most proud of her PhD in Clinical Nutrition so those were the only "associations she chose to join", they cost money to be a member.
I had serious chemo brain when I made my phone call interviews (I was desperate and would not allow for an in person appt until I spoke to the Dr. in person). I called 3 and asked these questions (I think..heh heh).
1. What degrees and licenses do you have? Where are they from? I had to ask questions like "what does that mean?" I am serious. I was getting ready to trust my life with someone completely new and I had to be serious. If a question came to my mind I asked it and trust me some were very stupid!!!).
2. Have you any experiences with cancer patients? Tell me about them. I made sure I heard a few stories that made sense to me and colorectal stories were especially important.
3. Are you affiliated with any other companies? I would never see a ND that I thought supported only 1 or 2 brands of products. NDs are usually very committed to each and every patient and pride themselves on treating them as a true individual. Mine only sold me supplements she knew I could not get at the health food stores or on the internet. I appreciated that honesty. Make sure you get that special kind of treatment. One day our oncologist, and other docs will really learn how to do it.
4. What kind of treatments would you usually recommend and why? You will probably get a song and dance about "I can't really say until I see you in my office"...which is fine but they still should be able to give you some idea of what they would do given your diagnosis.
5. What documentation should I bring if I made an appt.? Mine did a hair analysis and urine test but accepted my blood work from my last chemo treatment that saved me those additional charges.
Quite honestly, you can ask questions till the cows come home, but feeling comfortable with them is extremely important. I know I rag on about alternatives, diets, and how pharmaceutical companies are killing us all but that all being said, I personally think the most important thing we all need is a complete belief in the approach you and your docs are taking. If you lie in bed at night doubting everything you are doing, the beast will get you. He preys on that.
I prefer to take the Davy Crockett approach, "grin em to death".
***********************************************
In any case, you need to be comfortable with whatever you decide.
I will pray for you.
Hugs, Eleonora0 -
Sorry about you being high risk. I am stage II also and have begun chemo 5fu/leucovorin. 6 down in a 24 treatment reg. I thought about doing the mayo clinic study but went to a regular onc in the end. Let me know how you are doing.0
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