not so good news today ..please respond need encouragement

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HeidiMarie
Posts: 8
Joined: Sat Apr 15, 2006 7:19 am

not so good news today ..please respond need encouragement

Postby HeidiMarie » Sat May 27, 2006 6:33 am

Hi Everyone,
My name is Heidi and I have posted a few times but usually do not get many responses.
Yesterday I had a reg Dr. apt and this will be my 11th round of chemo comming up on Monday, I have 11 tumors in my liver and two lymph nodes that are cancer, that they found after my resect surgery. (no bag). Well I am on Avastin, 5-fu, and lucovorin, and Oxyplation. Well he said he is taking me off the Oxyplation as the side effects are now affecting my feet and legs and he said that they only keep people on it for about six months anyway. The drug that he wants to put me on to replace it is Campostar, which is deff going to make me loose my hair. I know its prob really really stupid of me to feel so upset about that but I am, another thing is , is that my tumors have only shrank about 30%, and I asked him the big ? about how long for survival, and he said he really can't say it could be any where from a year to three or more as there is always hope. I am a 33yr old wmn who just got married going on three years ago (Oct) have a 14, 11, and 1yr old. I am just so damn scared and not ready. The hair thing is big as I have long (down to the middle of back) that is beautiful and curly. It was one of the things my Husband fell in love with me over along with the other things.
The dr. decided that because of how upsetting it was to me, that on Monday when I recieve chemo (I get it every 12 days)that we will do the normal regiman except leave out the Oxyplation and Campostar, then we will do an "early" CT scan and see what happens wether the tumor shrank or grew or stays the same and then we will take it from there.
AM I DOING THE RIGHT THING??? WILL ONE CHEMO REALLY MAKE THE CANCER WORSE IF I DO IT THIS WAY?? I am just so so scared and don't know what to do. The idea of the wig is getting better with me I got one there yesterday and have since talked with my family Please help I need so much encouragement, Is anyone had to deal with a situation similar to mine or has cancer like mine with how many tumors and lymph nodes. And what are Drs telling you about life span? Please reply.
Heidi

michele
Posts: 62
Joined: Sat Mar 11, 2006 6:34 pm

not so good news today...please respond need encouragement

Postby michele » Sat May 27, 2006 7:27 am

Heidi,

I am stage 3c, so, I don't have the liver mets. But, I did also have really long hair before I started my chemo (oxaliplatin, 5fu, leucovorin and avastin). I knew my hair would thin out alot (since my mom finished her chemo just 2 weeks before I started mine for colon cancer also). So, I donated my hair to locks of love. I wanted someone to be able to benefit from my hair before I lost a lot of it. I am not saying that is what you should do. My husband also loved my long hair. But, I told him this is just my "chemo hair" and I will grow it back hopefully.

I really don't think missing one treatment of the camptostar will make a huge difference in the long run if you need time to think. I have had to have treatments postponed due to platelets one time and low neutriphil counts on another.

Also, don't get to focused on the survival rates he gave you. I have been so encouraged by people on this site and others that have survived much longer with similar circumstances as what you seem to be in. It is definitely a rough ride that I wish none of us had to deal with, but we can make it through. Just have faith and take one day at a time.

my prayers are with you,

michele
Diagnosed Dec 2005 stage 3C
LAR Dec 2005
Mom finished chemo for stage 3B Jan 2006
I had chemo Feb 2006-Aug 2007
Currently NED

Rochelle
Posts: 43
Joined: Fri Sep 09, 2005 3:58 pm

Camptosar

Postby Rochelle » Sat May 27, 2006 9:57 am

Hi Heidi

I am Stage IV with numerous liver mets and was diagnosed with 22 out of 36 lymph node involvement, including abdomen and lungs. From the time of my diagnosis until now, my CEA as decreased from 26 to 2.7.

Regarding lifespan, statistics are inaccurate and I ABSOLUTELY REFUSE to listen to them. There have been many times NOW when my Onocologist sees me and has expressions of disbelief on her face regarding my physical improvement (her demeanor of pity would show on her face when she looked at me when I was first receiving treatment in April of 2005).

For this Camptosar and Erbitux treatment which I have recently started, the Onocology Pharmacist was able to run a lab test against my DNA strands prior to starting the drugs. It was found that 1 out of 2 of my DNA strands are compatible with this treatment.

With Camptosar, some patients lose all of their hair, and others only thinning.
If you have thinning:

1. A hair piece may be an option for you or a hair thickener check my response to Cynnycals topic of "So, the hair thing".
2. Casual scarves and fashionable hats may be something you can work with.

Give yourself a manicure, a facial, wear clothes that make you feel good.
My mindset is that if the treatment works and I feel better, that is all that matters. Everything else will slowly fall into place.

Hang in there, your concerns are normal

Rochelle :wink:

ASTEPHENS33
Posts: 353
Joined: Wed Dec 14, 2005 10:04 pm
Location: Seattle, Washington
Contact:

That Feeling

Postby ASTEPHENS33 » Sat May 27, 2006 11:48 am

I am a stage IIIA and just completed my chemo regime and I can totally relate to your situation. I am amazed at how much I can obsess about and I think it was my way of dealing with powerlessness of the situation. Especially right before my next cycle, I had that "I don't want to do chemo anymore" feeling and would have all the appropriate emotions with it - anger, sadness, etc. I'd then get started and with the cycle and feel good - like I was doing something to fight the cancer. I'd then think about the end of the chemo (which is where I am now) and think about the waiting or how my life had been organized around the chemo and then it'd be gone. All the issues I had pre-cancer would need to be addressed. So I guess for me it was quite a few conflictive emotions. I don't know enough about the drugs your doc is recommending, but he seems caring to reflect your emotions in the treatment. I like that.

maggie

Postby maggie » Mon May 29, 2006 7:26 pm

Hi....
I didn't have to have chemo or radiation (luckily) so I have no experience with any of it (I was stage I). But I did want to comment regarding your hair fear. I imagine it is an issue and like someone else mentioned, it is a small thing to obsess about taking your mind away from the big things, but you shouldn't worry about your husband missing your long hair. He'd miss YOU a lot more if you didn't go through with the measures that will save your life. Good luck and stay strong!!!
Maggie

Brad
Posts: 38
Joined: Mon Nov 28, 2005 8:19 pm
Location: Pampa TX

Postby Brad » Tue May 30, 2006 8:01 am

I just finished 6 months of FolFiri plus avasitn (5-FU, Leuc, Camptosar) My Dr. told me that my hair would only thin slightly. And they were right. The only people that even noticed it were me and my wife. I completely understand how you are feeling. People say that they would gladdly lose there hair to save themselves. But when the circumstances start feeling so overwhelming, losing your hair is kind of like the straw that breaks the camel's back. Goodluck with your treatments.

Brad

Erika
Posts: 73
Joined: Wed Oct 05, 2005 6:46 pm
Location: Blacksburg, Virginia

hair

Postby Erika » Tue May 30, 2006 11:41 am

Heidi,
I am a stage IV, liver mets survivor and was on Camptosar. I did not lose my hair, but it did thin. Through cancer I gained tons of weight from steroids, acquired some big, long scars, had a bulging HAI pump in my stomach that I affectionately called my third boob. What a beauty!!
Whether the hair stays or goes, you can do this. It's temporary. Imagine a day when you look back on all this. No more chemo, wigs, weekly doctor appointments. That's your goal. You are stronger than cancer.
Erika

Fishy
Posts: 42
Joined: Mon Oct 24, 2005 3:04 pm
Location: Portland, Oregon

Postby Fishy » Tue May 30, 2006 2:29 pm

heidi, i would not worry about your hair falling out with campostar, especially since you are so young. i had 12 treatments with 5-fu and oxyliplatin, and i lost about 20-25 percent of my hair. after about the 7-8 treatment it quick falling out all together. i later was switched from the oxyliplatin to the campostar. i didn't notice ANY hair loss with campostar. i know everyone is different, but if you have nice healthy hair now, i seriously doubt campostar will make it all fall out, slight thinning is probably the worst you will get.
Jenny Fish

Terry Miller
Posts: 72
Joined: Mon Sep 19, 2005 12:45 pm

You

Postby Terry Miller » Tue May 30, 2006 4:26 pm

Heidi,
I will never discount what a person feels about any situation. However, you have so much for which to be grateful. If you think your husband loved you because of your long hair....think how much more he'll love you when it returns and you are still attached to it! Being a survivor is your only job right now. It's not one that anyone would ever want but the fact that your oncologist's spirits are being buoyed by the fact that you refuse to allow the "beast" to win speaks volumes as to your determination and will to live.
Keep on fighting, Heidi and don't get caught up dwelling on statistics... you have already proven them to be wrong.
Sincerely,
Terry

mtsko
Posts: 11
Joined: Thu Jun 08, 2006 1:35 pm
Location: ca

Postby mtsko » Thu Jun 08, 2006 2:24 pm

Heidi,
Hi swthrt! It's so normal to be scared. I am a Stage IV cc survovor. on my 3rd or 4th chemo regimine. I had camptosar once. It didn't even thin my hair. What I remember on that was comstipation. I just had to take stool softeners and such. I have been given 5FU, oxaliplatin, camptosar and avastin, erbitux. I have never lost my hair. there's more hair in the shower drain, but no bald or thinning spots! my mom had brst cncr early in life. They didn't have all these drugs they do now. she lost her hair, if there is hair loss, it grows back after tx ends. cute little fine baby hairs!
Scared is normal. But pls know, you have tremendous support here!
find the humor!

guest

Postby guest » Fri Jun 09, 2006 9:58 am

Mstko,

My mom has been on all the treatments you listed as well. She is currently on Camptosar and Erbitux. Did you have any success with these? I think she has a feeling that if this treatment doesn't work, there is nothing left for her doctors to try. She had mets to the liver, but they thought they got everything and she was done with chemo in Feb. Then in April she found out it was back--a spot on the liver, a lymph node, and now about 20 small spots in her lungs. She feels really good, though, so I have hope that her treatments are working. I'm just wondering if it stops working if there are other chemo treatments to try after these???

Amy

christy217
Posts: 15
Joined: Sat Jun 10, 2006 9:45 am
Location: Lexington Park, MD-near DC
Contact:

Postby christy217 » Sat Jun 10, 2006 10:19 am

sweetie, I am not in the same situation you're in, but I will say this. My boss, was diagnosed with stage IV colon cancer, it was in 23 out of 23 lymph nodes, she had some mets to the liver too, she underwent chemo for almost a year, 8 years later she is still here.

When my docs give me statistics or even say stuff like that, I don't listen, NO ONE DIES FROM STATISTICS is what I tell them. And everyone is different, they're bodies are different, etc.

Avastin is definitely a good agent to be on, the Oxaliplatin in hell, and it's good to see you're getting some relief there.

As far as the hair goes, you stated that is one reason why you're husband fell in love with you, it's not the only one though, IMO, anyone whose ever had to deal with cancer is to be put on a pedistal, and you definitely classify. Your husband fell in love with you, not just your hair honey.

If a wig makes you feel better, then go for it, I know how frustrating you can feel though over losing your hair, I haven't lost mine, but if I did, I would feel like it's one more thing that Cancer has taken from me, I have a hard enough time dealing with the scars from the surgery.

You're in control here when it comes to your care and treatment, although sometimes it might feel otherwise. Attitude is everything in my book, keep your head up, people do beat this thing! :wink:
My Blog:
http://www.cdcafe.blogspot.com

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