I just got home from my oncologist's office. I am so upset! I have finished my first 6 weeks of chemo without too many side effects, and I was just beginning to relax about it, and my doctor informed me today that I have only been getting 75% of the dose I should be taking.....(due to the fact that i was on methotrexate for MCTD earlier in the year...) Now he wants to increase it 25%. Is a 25% increase enough to make side effects worse? And I also thought that I'd be done with chemo in early November, but now it seems that I will be done with it later, because I was not recieving 100% of the dose. I was not aware that I was on a smaller dose......I feel like he should have been more clear about that from the beginning.....I'm scared all over again. Am I being upset for nothing? Help!!!

Windy.

There is always a delicate balance between the dose and side effects. Ask question from your oncologist. Ask him what is the trade off (side effects verses the real disadvantage of staying on low dose). If not satisfied, try to get second opinion from another oncologist.

BTW, during chemo my blood count were not coming back up enough even after three weeks, so onco dropped my dose by 35%.

Windy:
It's easy to try to look months ahead when going through chemo and your head is spinning. You have this plan in your head that you only have X number of weeks or months left, and now the possibility of a longer regimen. I can empathize with you. The only advice I have for you is to TRY to take it day by day. Don't look too far ahead, or you will overwhelm yourself.

Also, you may want to try taking an anti-anxiety medication. Most people going through chemo benefit from this as it is one of the MOST difficult times one can experience in life. Don't be afraid to ask your oncologist for a long-acting anti-anxiety drug-- like Klonopin or Xanax XR.

Hang in there and best of luck,
CancerDad

Windy, I empathise with you too.. but I think hes only doing what is best for you. I was put on a pretty low dose for starters and after about 4 months he dropped it again to an even lower dose because of the side affects also. Hes only doing that to help you...
Take care and take time to smell the roses.
Maz

More empathy from me as well Windyblaze. Twice I had my chemo postponed as my counts were too low and this lengthened the time to the end of the treatment. Luckily my last treatment was a couple weeks prior to Christmas 2001 so I was well enough to enjoy the holidays.

Also, typically chemo does during radiation treatments are lower than when not receiving radiation.

Yes, your oncologist should have been clear about your regime in that when you were getting less you should have been made aware of the effect this would have on the length of treatment.

I guess the worst part for me is that I feel as though I have a false sense of security now. I made it through the first 6 weeks without too many problems, and I was just beginning to feel like this chemo thing wasn't going to be too bad, and that I would be "ok" through the rest of it. Now I'm thinking that it wasn't so bad because I wasn't getting the full dose. Now he's going to hit me with the rest of it, and things might be different. I keep telling myself that 75% is still a pretty good dose, and that 25% more couldn't possibly make it too much worse, but the other half of my brain just isn't buying it. Cancer is a nightmare that I desperatly wish I could wake up from...........

W.

Windy:
Hey it's a percentage that MIGHT make it worse for you. Who knows? But you NEED to deal with this thing day by day. Also, I have to read back to see if you took my advice and spoke with your onc. about a long acting anti-anxiety...Xanax XR or Klonopin. I'm telling you, there is no shame in it, and it will help shut down the constant circling of your brain... where it tends to race around having you worry constantly. This is perfectly normal for people going through chemo. Believe me, I've spoken with PLENTY of people about it. Unless you can use yoga or imagery and have mastered it to clear your mind completely, then you NEED some medication to help you.

I hope you take my advice, and I wish you the best with the increased dosage. I KNOW you will get through this.

Warm Regards,
CancerDad

Hi CancerDad, Yes, I do have Xanax. I take it at night to help me sleep, and it's working. Sometimes I'll take it during the day when I'm thinking too much, but it makes me so sleepy I just end up taking a nap. That's why I don't want to take it all the time. But, maybe I should just try it for a while, maybe the need for a nap will lessen. I know I'll get through this.....I just want to be through with it yesterday!! ;-) Also, I hate that look that people get on their faces when they find out I have cancer.....it scares me!

W.

Windy:
Get used to it... you are ALWAYS going to get that look, and the people who really don't know what to say "so, how areeee you?" They draw out that "are" and have a look of concern. Then when you tell them you are currently in remission, they automatically think that everything is fine then...many times, as in my instance, the side effects leave you with chronic pain, urinary problems, sexual dysfunction, financial strain, etc. So, either way, many people JUST DON'T GET IT!

You might want to try breaking that Xanax tab in half, or ask your doctor for the XR version in a low dose. The problem with Xanax is it peaks very quickly, meaning it's in your body at high levels very quickly and then quickly wears off leaving you asleep or able to go to sleep, but then you find you wake up again with worry.

Give it some thought. And hang in there. There will be an end to those stares... remember, you can tell people as much or as little as you want. And don't let THEM scare you... most people who hear the "C" word equate it with death... we all know there are much better treatments, depends on your staging, and only you and your oncologist know the statistics. Then again, remember too that you are more than JUST a statistic. So, try not to be scared. See if you can get that longer acting medication, and keep talking to us... we UNDERSTAND your plight, and don't look upon you with pity! ;)

Warm Regards,
CancerDad

Windy,

I feel for you, truly. I know how scary it is when they are increasing, decreasing, stopping treatments. Unfortunately I have learned that it is all part of this cancer rollercoaster. If you feel comfortable w/your oncologist, then put your faith in him/her. I was supposed to have my last treatment April 19, and here I am with one more month to go. I have stopped FOLFOX completely due to severe side effects and am now on Xeloda, which I am tolertaing better, but is less effective...I worry sometimes about that.

My onclogist said to me to try to accept that we are doing all we can...so that is what I do. I give it my all and even though my "all" means I did not finish the treatment plan as I had hoped. I feel that I will beat this disease! (most of the time anyway...I think we all have those moments when our "positive attitude" takes a temporary vacation).

Best of luck to you. Take it one day, one dose at a time...

Thinking of you...rooting for you, too!
Cats

Thanks for your replies. CancerDad, I will ask about the Xanax XR. And Cats, thanks for rooting for me ;-) It's only been since March for me.....I feel like I'm still in the initial "numb" phase, and I still have days when all I do is cry....but they're happening fewer.....I'm trying my best to not think the worst. You guys here are a great help to me. Thanks!

W.

I know that look on other people's faces when you tell them. They would probably look less shocked if you told them you had a heart attack last week.

I also know that feeling that 'this ain't so bad'. I felt that way after my first week of chemo. A little tired perhaps but that might be the anxiety getting to me, oh yeah who da man, I da man. The next few rounds dispelled that notion.

Again with the radiation, first week I felt nothing and told the radiation nurses that. They told me that it would only get bad near the end of the radiation regime. They were correct.

All in all though, as bad as it got it is not something that I would absolutly be terrified of having to go through again. Sure I would dread it (the treatments) but not to the point of fear.

JD:
Well said, and I agree with everything you said up to the point of "fear." We all fear different things in life, and it's ok to be scared about the unknown, and even the known. Cancer and treatment are scary things. JD, maybe it gets better the farther out you get, like at your point. But I have to tell you, I have been having some blood in my bag and on the outside of my stool. I see the stoma bleed, and I KNOW it's most likely coming from that, but I fear a recurrence. And I also fear that nasty Irinotecan. JD, they gave it to me in such high doses (Saltz Regimen) to be really agressive because I was young and had so many positive nodes even after pre-op treatment, that I was SICK AS A DOG. I scared my wife, my kids, and myself. So ask me if I would fear having to do chemo again, he!! yeah! But I believe it's a mind body thing too.

Anyway, I write this not to scare anyone, rather to let you all know that it's OKAY to be scared. For most survivors, this is the hardest thing you have to go through in life.

Sorry, enough of me preaching! JD, you know I have the most respect and admiration for you and mean NO disrespect.

Fondly,
CancerDad

PS I should say that I have a colostomy and that I know it's normal for stomas to bleed-- as long as it stops pretty quickly. But seeing the blood with stool brings it all back to pre-diagnosis of cancer. And it's scary. :confused: And YES, I have scheduled another colonoscopy... I AM due. ;)

If I wasn't scared of cancer and the wicked drugs they use to get rid of it, I wouldn't be normal.......It's funny, I really didn't feel all that bad when I was diagnosed, and now I have to take stuff that makes me sick to get better....And as Walter Cronkite used to say........"And that's the way it is"................... :rolleyes:

W.

I am not saying that I am not afraid of the cancer. I am. I am not afraid of the chemo regime. Like CD said though perhaps the time since having it has made me forget and maybe its because I was on only 5FU and Luecovorin. I have a tendancy to grit my teeth through ordeals and just take and wait it out. That means that I have not been too conscious of exactly how I am being affected.

CD, I too occasionally have my stome bleed a bit and I too feel that panic of seeing blood where one believes it should not be. I believe I have said how freaked I was at first at having to shave the peristomal area. However I can usually actually see where the stoma is bleeding and that alleviates fears of a recourance.

Just having a razor near the stoma used to give me the 'willies'. I have never actually cut myself in the 5 years since I first got the colostomy. My hands no longer shake while shaving either.

What I fear about a recurrance of cancer though is not the chemo. I fear another surgery and a different placement of the stoma. I am used to it where it is, and I don't want to have that enormous slice down my belly again or the paralyzed left leg. In fact the most scared I have ever been in my life was as I was being wheeled into surgery for the rectal resection and that was after being given a few tranq's. That is what scares me.

CD is right though, my fears are mine, everyone else reacts differently according to their own make up.