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I am confused

bdee
Posts: 305
Joined: Feb 2009

I have been having chemotherapy for five months now. The seven tumors left over from my surgery have only changed a tenth of a cm. Four have gotten larger, three have gotten smaller, but in such a small degree and a new tumor above the umbilicus has popped up.
Why am I doing chemo? I thought it was to shrink the tumors or get rid of them, not just keep them under control and have more pop up! I take 1,200 units of 5FU and 300 Avastin every other week. My doctor told me since I couldn't tolerate oxiliplatin, I wouldn't able to tolerate the next two chemo drugs. I am really depressed with this news. I have had to give up my job, seeing my friends at work, traveling to see my family, working in the yard and feeling good. From my talk to the doctor, I'll be on chemo for the rest of my life just to keep the cancer controlled, never eradicated.

Also, my doctor told me to stop taking vitamin C, multivitamins and any drinks with antioxidants. He said any OTC supplements that help cells also helps the cancer cells to fight off the chemotherapy drugs. Any one else heard of this?

I needed to vent so bad!!!

Debbie

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Well, first let me say that I'm sorry that you have found yourself in this most undesirable situation. It's one that I wouldn't wish on not even my worst enemy! My oncologist did tell me to stay away from some supplements as well. He said that it's not known how they interact with the chemo meds. I think others here may have different views and/or opinions but that is what mine told me in the very beginning. He didn't say anything about stopping the vitamin C, and he also told me that it IS okay for me to take a multivitamin.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi, Debbie

I just happened to meet with my oncologist yesterday and he echoed similar statements to what you said, so I just had to respond to you quickly - I can feel your anxiety.

Oxaliplatin is a very strong drug and it does knock the cancer around and gives it a good lick. Since you can't tolerate that, you are getting the next best chemo option, the 5fu and Avastin - I was actually doing Avastin and Xeloda, the pill form of 5fu. This treatment is better than doing no treatment at all. I feel your pain though, a year ago, I was right in the middle of chemotherapy and felt like you did and experienced all of the questioning, the anger, and the sadness, the misery you name it.

My onc told me yesterday that Chemo in and of itself, does not cure cancer - it merely shrinks the tumors but does not rid the body of them and it slows down the process where cancer can come back.

He told me that SURGERY is the absolute gold standard in the fight against Cancer.

I found that quite interesting - and when I read your question of Why? it really hit a chord with me and I thought I would share that with you for what it's worth.

As for the 2nd part on the anti-oxidants - my oncoligist told me the exact same thing. I was taking Milk Thistle for my liver for awhile, but that was it. He told me what your doctor echoed, that taking anti-oxidants can actually help the cancer cells and lessen the effects of the chemotherapy. I think there is some truth to that.

I've read your posts and your story touches me...I wish I could tell you something that would make all of your problems go away.

This Cancer tried to rob us of the things we hold dear, but I would say please fight on with the treatments you are currently taking - I was doing Xeloda and Avastin for a little over 8 months, they had prescribed a year of those drugs - so even though you feel bad, try to keep doing those. Every day that you can extend your life offers the hope and promise that another drug or treatment will come along that you can tolerate.

Think of it as a lease on life - we'll just sign up for another year...and then another...and then another...hope we all and mankind too find a better way to beat this Cancer...it hurts me that so many people are out ther suffereing, just breaks my heart.

Use this as your mantra:

"Cancer does not define me...but how I Fight and Live with Cancer DOES define me."

You are a winner and very strong...I will say a prayer for you today.

So glad that I was around for "your vent." Get mad - then get even.

All my best to you

-Craig

bdee
Posts: 305
Joined: Feb 2009

I had my treatment Monday and am feeling so bad from the treatment I just needed a place to vent. I hate putting anymore worry on my husband. He takes such good care of me while still working a very stressful job that I just can't think of saying some of the things I say here. He doesn't need anymore stress in his life.
Thank you for letting me vent and for giving me words of encouragement.

Debbie

Fight for my love
Posts: 1530
Joined: Jun 2009

My hubby is on both chemo and radiation,the radiation oncologist did tell him not to take vitamin C and vitamin E.So before he started the radiation and chemo,I just let him stop taking all the supplements.Although my major was not chemistry,but I understand that the chemo and supplements are both chemical things,they may react with each other.So for safety reason,my huddy doesn't take any supplement now.You can also go to Memorial Sloan-kettering cancer center website to search "Herb":http://www.mskcc.org/mskcc/html/44.cfm,then click below "best results",then you will have information about supplements.Hopeflly this will help.

mom_2_3
Posts: 965
Joined: Nov 2008

Debbie,

My oncologist told me I could only take a multi-vitamin during treatment as it could interfere with chemo treatments. When I am finished with my chemo I plan on starting Vitamin D, selenium, calcium, curcumin and mushroom extract.

I do take Xantac as part of my HAI treatment and after I finish active treatment plan on doubling my dosage as a study was done that showed recurrence prevention with 300 mg/2x a day.

Hang in there with your treatments! Is there an opportunity for more surgery? Also, have you thought of juicing? My oncologist did give me the ok on that one.

Amy

bdee
Posts: 305
Joined: Feb 2009

My onc did tell me I could keep taking my calcium and vitamin D because I am at risk of osteoprosis because of taking Synthroid for over 25 years. I have allergies, too, and he told me to quit taking my Clarinex, so I am going to start being stuffy and sneezy now, too.

Debbie

bdee
Posts: 305
Joined: Feb 2009

I didn't answer all your questions.
No more surgery unless the mucous comes back (it is starting, but not enough at the moment) I don't think my onc would be for juicing either. He told me not to drink things with antioxidants like green tea and grape juice, etc.

Debbie

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Your doctor doesn't seem to be offering you much hope of progress. I'm sure his reasons for thinking you could not tolerate other chemo drugs are good, and what do I know?, but I wonder how sure he can be without trying them. Does he understand that you are willing for him to give you more aggressive treatment? Maybe you should get a second opinion from another oncologist.
--Greg

bdee
Posts: 305
Joined: Feb 2009

Oxi almost killed me. I went three months without eating solid food and could barely drink anything and he says the next two drugs work in the same way. He did ask another oncologist to look at my CT Scan (another doctor in his clinic) and they both agree that the other two options would not be right for me just yet. If my CEA hits 5 or the ascitic fluid gets worse, they would have to go with another treatment in a low dose after surgery.

Debbie

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Thanks for helping me understand a little better. Does "after surgery" mean that another surgery is planned? I would take that as a hopeful sign.
--Greg

bdee
Posts: 305
Joined: Feb 2009

Another surgery is not being planned and will only happen if the ascitic fluid becomes too much for my abdominal cavity to contain. That is what happened to start this whole thing. I didn't have a colonoscopy like a lot of colon cancer patients. My appendix had a cyst that ruptured which sent 10 pounds of ascitic fluid into my abdominal cavity. This fluid or mucous was filled with cancer cells. A colonoscopy would not have found my cancer only a CT scan was useful. This type of colon cancer is so rare (1 out of 1,000,000) that the fluid had to be sent to an University Hospital to have the pathology on it. The tumors that were left can still secret this fluid and that is what spreads my cancer. I don't have any tumors in any of my organs, just around or behind them.

Sometimes I feel like I don't belong on this board because of my differences.

Sorry, I "talk" a lot.

Debbie

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Nope, Debbie

You belong right here with us and we all want you here to stay with us.

Look at it this way, there could be someone else like you and your story could help educate and inspire them and keep them strong to keep on fighting.

Your story means something. YOU mean something.

Please continue to enlighten us - even if we can't help with advice, we can at least support you when you are feeling blue or need to vent.

It makes a big difference to us that you stay and post.

I'm so sorry that you have to go through this. I read this post and my jaw dropped literally open at what I was reading.

You're an inspiration and I want you to stay and tell me more about this.

My continued best to you
-Craig

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Wow, I have been saying that a lot lately. Debbie, there are other chemo options out there and just because you responded badly to Oxi does not mean that you would respond badly to Irinotecan. I didn't I had 6 rounds of it and other than being really nauseated the 1st time round until they got my pre-meds straight I didn't have too much problem with it at all! I was not given Oxi because I am an athlete and I cannot have neuropathy (no can do!), so my doctor put me on XELIRI which was Xeloda and Irinotecan. I worked full time as a Forest Ranger during this time. The Xeloda did suck because of hand and foot syndrome, but you could always get 5-FU and Irinotecan instead as well.
In addition to this chemo combo. there are other treatments out there. I don't know what it is called but I know there is something where they flush your abdominal cavity w/ the chemo drugs... I encourage you to go to a major cancer center for a second opinion, although I understand many won't give you one if you are actively in treatment..

Af for supplements, there are oncologists out there who are a little more open minded and in my case actually referred me to an N.D. who deals with cancer patients..I would be mad too, so take that anger and FIGHT! Don't just let them tell you to roll over and accept your fate. If that chemo isn't working you need to be on something that will.
There are loads of people who eventually become cadidates for surgery. I don't know your situation exactly, but you need to insist that your doctor get on the same page as you and try something else!

At least they are saying that if your CEA goes above 5 they are going to try "something else", but I would sit down and have a heart to heart w/ your doctor and talk about what all alternatives are available , because they do exist!

Best of luck to you,
Susan H.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

The chemo I was thinking of is called HIPEC. I don't know if that applies to your situation or not, but I would certainly ask about it if I were you. Best wishes,
Susan H.

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