Is chemo really worth it if it runs your body down?

lmliess

Bear with me, I am having one of those frustrating days were I feel like I can't get ahead. I got my blood levels tested yesterday and my WBC and platelets are really low. So low they are going to decrease my Oxy a bit. The more I read about chemo and the side effects I start to panic. I want this cancer to be gone forever but what am I doing to my system? Will I be able to repair the damage that the chemo is doing? Is this all normal and do you repair what is broken down?
I wanted to start juicing but now I have to stay away from uncooked fruits and veggies until everything goes back up.

Any thoughts, ideas or positive input would be great right now.

Thanks!!

PhillieG

I Understand your Frustration
The human body is really amazing, the liver can regenerate and the body can also withstand quite a bit of the medication. It's good that they are reducing the Oxy, it shows (me at least) that your doctors are paying attention to you. While you may never feel like you did before all of this started, you can feel good and lead a fairly normal life.
Hang in there.
-phil

jsabol

chemo
Sorry to hear about your current problems; I have just posted my five year survivor info, and, from this perspective, I can say I both understand how you feel, and, yes, for me, it was worth it.
I "only" had 5 FU and leuco, back in '04, which was standard then, but it hit me hard. I switched oncs because I could not stand the one I had who referred to it as "chemo lite" and regaled my with stories of people working 50+ hours a week with no problem. I was so fatigued, I could barely get out of bed some mornings; I went on medical leave, and watched whole weeks drift by, while I struggled with no appetite, no energy, sun sensitivity, blood clots, low blood counts. I was sure I would never feel healthy again. It took a year plus out of treatment before I began to feel like myself. Now, even as I approach my 59th birthday, I feel better than I could have imagined; at the gym a few times a week, active, working full time....
Hope things get better for you, too. You have at least one beautiful reason to put yourself through this. I kept reminding myself that powerful diseases require powerful treatment; be sure your onc and nurses know how you are feeling.
Regards, Judy

Annabelle41415

I'm With You
Linda: I feel the same way. My counts are so low as you read on my previous post and Craig said that if it gets too low someone could bleed to death. That scares the crap out of me since I'm only 4 treatments into it. I talked to oncologist today and she said because I had the low pelvic radiation that my bone marrow is not producing like it should. Well, now she said I have to wait until next Monday's blood count and then Tuesday I will know if I can take chemo again. It never went up 25 points in one week and I know it isn't going to next week. I just don't know what the answer is. Do we give everything up to kill this disease and still think we can beat it or not. I want to continue on and I'll do everything I can to make that happen. I just hope my body can keep up with what the doctor's have planned for me.

My positive thought for you - you look so beautiful in your picture along with your darling daughter. You have so much to give to her because I know from your posts you are a wonderful, thoughtful and caring person. I'm no longer doing this for me, but my children and grandchildren. By the way, she looks so much like you.

I feel your struggle and I'm living it with you.

Kim

Sundanceh

Understand Completely
Hi, Linda

I understand your fears and concerns too. When I posted to you and Kim yesterday, I was just trying to tell you what happened to me from the chemo. I only completed 8 of 12 and had to quit, my body had just had enough of that stuff.

And the chemo permanently compromised my immune system as a result of fighting off the cancer. I thought the same things you did when I was doing it...is it worth it? I would say Yes, because you have a beautiful daughter and you are just a a couple of years younger than me, so I believe you must try to fight...please don't give up.

The bottom line is though that everything comes at a price - the fight to live costs some of our health as a result of these nasty drugs. Unfortunately, the medical community has nothing else to currently offer us.

Your CEA should determine whether the chemo is working and is effective. Mine went from 19.2 down to 0.8 and last check was 1.5 which is in the normal range for the liver. So, it appears to me that it worked for me at least for now. Life is precious and every day valuable, so I think it is worth it to keep trying...when you're in the middle of it though, it's EZ to question that, but that's because it is a hard battle...and when you win, how glorious it will be for you.

Just keep telling your oncologist how you are feeling and they might adjust the doses for your cycles.

With 2 potential tumors on the pleura of my lung, I'm very concerned as to what can be done to currently treat my condition. My platelets are forever low and would have to be boosted to even think about chemo again...if I can't have surgery and I can't do chemo...yes, I'm concerned right now.

I know others have mentioned the WBC as the major factor in chemo...it is an important factor, but blood platelets are the other big factor. Reading at or under 1000,000, you should not do chemo until those levels rise. If the doctor says go ahead - question that.
The risks I mentioned last night are real for low platelet counts - it's significnat.

Low WBC means you can't do chemo either and have a greater risk of infection.
Low blood platelets means your ability for your blood "to clot" is severly compromised and if you get cut or have a major accident, the blood won't clot and internal bleeding can occur and that's an issue.

Kim is right about the post I gave you yesterday. I like being positive, but I'm also a realist and with over 5-years under my belt fighting this from age 43-48, I do have an understanding and a certain knowledge base of what goes on with surgeries and treatments, and just wanted to be upfront with the both of you about what I personally learned from my Oxy / Avastin / Xeloda chemo treatments. We're all here to help, educate, share, and inspire each other during our battles.

We have not officially met, but let me say Hello to you and I want you to know that I am concerned for you and care about your's and Kim's condition and all the others on this board that I have and have not talked to yet.

I see a chest surgeon tomorrow and my future is up in the air - I've been pretty sick about it all day as tomorrow draws near...just wanted to check the board one more time before I turned in for the night.

Nplate is a newly approved FDA drug that raises platets and gives us another drug that can help us in our battle...I signed up for it, but we discontinued chemo before taking it. Now with chemo looming again in my future, I'm sure I'll have to take it in order to have a chance.

But, please hang in there and please continue fighting...I am pulling for you and will help or answer any questions for you that I can. Believe me, I understand how you are feeling, I'm into Year 6 now - I know you can do this too with me. There will be good and bad days, but I have read your posts and I know you will be strong. I am here for you.

I just could not go to bed when someone is out there asking for help. I hope that we talk soon...I've been hoping you would post on one of my discussions, but I know alot of people don't know me well enough yet. However, Kim is getting to know me some...

I've been to the mountain top and am still living to walk back down it, so I would never tell you anything that I did not believe in or experienced.

Ok, I'm going to stop now...I like you and Kim and always like to read your posts.

Good night to you guys and I am thinking about you both - Craig

taraHK

so tough
It is so tough. I feel I need to send a mixed message. On the one hand, it is YOUR CHOICE. Listen to your body, do what feels right to you. But on the other hand, I want to say, hang in there if you feel you can. It IS TOUGH. But, it is good that you and your team were paying attention and have adjusted the dosage. And, my personal experience is that yes the body does repair and recover. It takes time! but it does. I am sending "repair and restoration" thoughts you way.
Love,
Tara

eric38

taraHK said:

so tough
It is so tough. I feel I need to send a mixed message. On the one hand, it is YOUR CHOICE. Listen to your body, do what feels right to you. But on the other hand, I want to say, hang in there if you feel you can. It IS TOUGH. But, it is good that you and your team were paying attention and have adjusted the dosage. And, my personal experience is that yes the body does repair and recover. It takes time! but it does. I am sending "repair and restoration" thoughts you way.
Love,
Tara

Would you rather be run down
Would you rather be run down or dead?

Eric(:.)

KathiM

I felt that way, too...
More after I was told I must have chemo again...for the breast cancer...barely 6 months after my end to treatment for the rectal....I had dropped 45 pounds, my WBC went into the toilet each session, and I barely had strength to crawl back and forth from bed to bathroom during my treatment 'week' (I, like Judy, had 5FU and Oxy...it was 4 years ago...).

I kept on going on...keeping my 'big' payoff in mind---a 3-day trip to a spa in Palm Springs, all for ME!!!----after treatment. And I did it!!!! There were more bumps...I had challenges with bowel obstructions, and, since I no longer have my rectum, I still have to be careful of what I eat...

But stopping was not a solution for me. I had 2 'chemo breaks' when I was just to doggon tired to go on...but I did finish, and everyday the memories fade a bit more...

You have too much to live for...that angel in your picture...and, to be blunt, Farrah started with chemo that wouldn't ruin her looks...sigh...I still wonder if she had chosen the 'big guns' to begin with, would that have made a difference...

Hugs, Kathi

dixchi

Papers
I got scared early when they put papers in front of me to
read and sign that stated all the possible long term effects of chemo.
Good Grief there are so many.....but I felt I had no choice..
endure or die.....don't think I would be here this minute if
I had not had chemo but it was a miserable experience....but
I made it through. They also gave me a booklet with all the
side effects and how to deal with them and pointed me in the
direction of the Wellness Community which was an absolute godsend
with all their programs and exposure to others who are going thru
the same thing. Our choices and decisions do make the ultimate
difference and I agree that maybe some of Farrahs decisions and
choices were not the best.

Barbara

lmliess

KathiM said:

I felt that way, too...
More after I was told I must have chemo again...for the breast cancer...barely 6 months after my end to treatment for the rectal....I had dropped 45 pounds, my WBC went into the toilet each session, and I barely had strength to crawl back and forth from bed to bathroom during my treatment 'week' (I, like Judy, had 5FU and Oxy...it was 4 years ago...).

I kept on going on...keeping my 'big' payoff in mind---a 3-day trip to a spa in Palm Springs, all for ME!!!----after treatment. And I did it!!!! There were more bumps...I had challenges with bowel obstructions, and, since I no longer have my rectum, I still have to be careful of what I eat...

But stopping was not a solution for me. I had 2 'chemo breaks' when I was just to doggon tired to go on...but I did finish, and everyday the memories fade a bit more...

You have too much to live for...that angel in your picture...and, to be blunt, Farrah started with chemo that wouldn't ruin her looks...sigh...I still wonder if she had chosen the 'big guns' to begin with, would that have made a difference...

Hugs, Kathi

You all are wonderful....
...and thank you so much for your input. Reading your posts and putting my daughter to bed last night and seeing her smile at me with her big brown eyes made me realize that sometimes life is hard and you just have to saddle up up and do what needs to be done. I would never want my daughter to ask why I gave up with only 5 more treatments of chemo and a good chance of staying NED!

I realize all of us going through this makes us some pretty strong and tough people!!

I think I had my pity party yesterday and I am getting back to my fighting self again.

When I got in my car to come to work this morning the song "I Won't Back Down" by Tom Petty was on..think that was a sign???? :-)

Thank you again and have a great day!!!

HUGS!!!

Linda

idlehunters

dixchi said:

Papers
I got scared early when they put papers in front of me to
read and sign that stated all the possible long term effects of chemo.
Good Grief there are so many.....but I felt I had no choice..
endure or die.....don't think I would be here this minute if
I had not had chemo but it was a miserable experience....but
I made it through. They also gave me a booklet with all the
side effects and how to deal with them and pointed me in the
direction of the Wellness Community which was an absolute godsend
with all their programs and exposure to others who are going thru
the same thing. Our choices and decisions do make the ultimate
difference and I agree that maybe some of Farrahs decisions and
choices were not the best.

Barbara

Chemo for Sure
Linda .... Good choice and only choice as I see it. Gotta fight the fight!!!!! Keep the faith.....

Jennie

sig

idlehunters said:

Chemo for Sure
Linda .... Good choice and only choice as I see it. Gotta fight the fight!!!!! Keep the faith.....

Jennie

my two cents: we had to stop
my two cents: we had to stop the oxalyplatin before the full course; we had long talks with my oncologist (the chemo guy) and we asked questions such as what is the percentage difference in my longer term survival chances if i stop oxy now (i had only three treatments with it if i recall right - this was during 2008); he told me that using oxy was thought to increase my chances by about 5%, maybe 8%. I was in too much discomfort (which to tell u the truth today, I cannot even remember what - I think the pains in my chest were just too much; plus i was very concerned about life-long aftereffects. Anyway, I made my decision, and like others have said, your's will be yours. I completed all the many other phases of tx for my rectal stage 3 (chemo-radiation first for six weeks daily), regain energy; first surgery; regain energy; try to stay positive; chemo for four months, first with oxy then not; enjoyed my son's wedding; regain energy; second surgery to reconnect (end of october 08) - that was hard - regain energy - and started to heal!
i have some neuropathy in fingers and toes that is less frequent now - when it hits me, it's a sharp pain, but it seems less frequent; i have other aches and pains, minor, and may be due to age anyway; and i am not too too fatigued anymore.
hope this helps, and check those statistics with your own team of specialists perhaps,
warmest wishes to you and all.

mom_2_3

lmliess said:

You all are wonderful....
...and thank you so much for your input. Reading your posts and putting my daughter to bed last night and seeing her smile at me with her big brown eyes made me realize that sometimes life is hard and you just have to saddle up up and do what needs to be done. I would never want my daughter to ask why I gave up with only 5 more treatments of chemo and a good chance of staying NED!

I realize all of us going through this makes us some pretty strong and tough people!!

I think I had my pity party yesterday and I am getting back to my fighting self again.

When I got in my car to come to work this morning the song "I Won't Back Down" by Tom Petty was on..think that was a sign???? :-)

Thank you again and have a great day!!!

HUGS!!!

Linda

Too funny!!
Our kids are almost 6, 3 1/2 and 8 months and the favorite disk of the two older ones (like the youngest has any options at this point...) is Tom Petty's 'Full Moon Fever'. And, their favorite song on that disc is 'Won't Back Down'. When it comes on we all sing it loud and it is highly appropriate.

When I came out of surgery (liver/colon resection) my husband presented me with a gift. He went to the jewelry story and had a custom charm and bracelet made. The charm is Dory from "Finding Nemo" and on the back of it he had engraved the words "Just Keep Swimming." It is the best gift (other than marrying me...) that he has ever given me and it reminds me to never stop and just keep going. Maybe you can have a charm made with "Don't back down" on it or some other phrase that motivates and moves you. When I'm down I just look at my bracelet and I quickly recall that there is no pain, no discomfort, no anything I wouldn't do or go through for my husband and kids.

lmliess

Good idea!
That is a great idea - I need to have something made with that on it! I love that song and the really weird thing is throughout the past 6 months, sometimes when I get down I hear that song somewhere - and it has been at weird places. We were at Subway one day and that song came on in the background. Maybe that is someone above reminding me...I may stand at the gates of hell, but not to back down!

lesvanb

Support during chemo
Many folks have written about making a decision about chemo or no chemo or reduced chemo and i heartedly agree. Listen to your body and go with it. However, if you aren't already doing complementary therapies during chemo, it might be something to consider. I relied heavily on my naturopath and acupuncturist during the last year's worth of treatments, and frankly don't know how I and my body (all one isn't it?) would have made it without their help. And yes chemo is scary. Towards the end of my chemo treatments (I did 10 adjuvant FOLFOX and 2 Zeloda and oxi neoadjuvant), I totally could feel how continuing to take chemo would eventually wear my body down and I would die. That's why rests in between are important. Now 2 months out I can feel muscle strength and energy returning, and it feels great.

all the best, Leslie