Patricia's Cancer Blog

CapOx

Hi Everyone! I had a right colectomy on May 14th, feel I did really well with it and had follow up last week. I was told I am a stage 3, T3 (not certain what that means, there was a lot of information thrown at us), N1 and will start chemo on July 6th. It will be this CapOx. An IV infusion followed by oral medication for two weeks then off a week for 5 cycles. I am just wondering if anyone else has been on this CapOx and how you made out. What were your side effects? Is there hair loss or thinning? Weight gain or loss? I have read much about the cold intolerance to the hands, sounds as if it is a common side effect. Any information is appreciated.

3 people threw a punch at your cancer.
Thomas sent you a hug.
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I have posted the link to this post on my page, asking pals who have advice/info on this drug to respond. Paws and fingers crossed! Hugs and tailwags :*)
Deborah likes this comment
Thank you Thomas!
Thomas likes this comment
Others more versed than I on CapOx. Em had the oxaliplatin with 5FU only one time before she could no longer do chemo. Sorry I can't add to the info. I will wish you strength and good thoughts for the chemo, and I will say.......You got this.
Deborah, Thomas like this comment
I DO!! Going in with positive attitude (I think)!! I think I'll stop researching it and just experience it and see what happens. By the way Neal, I owe you thanks for your response a while back. I was going to have the surgery at a small, local hospital but the day prior went for a second opinion at University of Penn. I really made out great!! The "top doc" 2017 did my surgery, I left two days earlier than expected and required pain meds the first 24 hours and that was it!!Thank you, Neal for lighting that fire under me!!!!!
Thomas likes this comment
Cap I think is the oral form of 5fu. My wife did several rounds of Folfox plus avistan which is what is standard for colon and rectal cancer. The avistan was added as she was stage four. She will be very sensitive to cold. My wife went as far as drinking warm water. The other thing is potential for mouth soars. Use biotene toothpaste and mouth was. Her hair thinned but she did not loose it. She did get a wig because she has anemia so bad that the hair was in poor shape before she started. The biggest side affect is from the oxy. Neuropathy in her feet. Watch that one. It’s almost been a year and her feet still tingle. Good luck you can do this. I’ll post more when I get on a real computer so I can type.
Thank you for your response Nathan
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New diagnosis

I've recently been diagnosed with an 'invasive adenocarcinoma, moderately diffused' on my cecum. Surgery (hemicolectomy) is scheduled for next Wednesday. Has anyone experienced this? What can I expect? Not sure about the need for chemo as of yet. Need to wait for pathology from surgery. Getting very anxious!

Jeff sent you a prayer.
3 people sent you a hug.
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Hi..Patricia

Just want you to know, that your message didn't just vanish Into Thin Air. So, welcome to the site.

Give it a little time and the right people will respond to your question.

Is normal for you to be anxious off the wall, even though your body would be happier with calm downer thoughts rather than stresser upper ones. That is easy to say but very difficult to do. That being said, if there are certain things that tend to help keep you at an even keel those would be a good focus at this point in time. And I realize I didn't need to be Einstein to say that but, when you're in the middle of what you are in... Let me state that in personal terms when I am in such a stressful situation I have a hard time thinking clearly and the anxiety tends to start running away with me. And since I don't find anxiety attractive and I don't want to run away with her I try to find things that will engage my parasympathetic nervous system as opposed to my sympathetic nervous system with its accompanying adrenaline cortisol and escalating stress hormones.

So, I don't know how you're feeling physically at the moment and therefore I don't know if physical activity is agreeable with you but if it is put that on the list, find some music that helps soothe you, meditate if you do that, Etc.

I will make sure others see your comment.

Try to breathe.....I shorten my breath when I get really anxious and this just makes me more anxious...



Patricia, Thomas like this comment
Neal did you see my earlier response to you? I cannot find it and mentioned to you this blog would be a learning experience for me.
No...I did not...and we are always learning....so welcome ..we can learn from each other and just keep asking whatever it is you need to know here... whether it is about your cancer or is about any aspects of how this blog site works

Also Jill, the administrator, is a sweetheart and if you have any technical issues about this site she's very helpful. She is the one responsible for creating and maintaining this site along with technical assistance of one other person. Also if you see any ads on this site as we click on those ads the site gets money and it helps the site to keep functioning but this is least of your concerns at the moment.

Also on occasion I will lose something that I posted so if it happens to you it is not just you, although overall this site functions quite well.
Thomas likes this comment
Hey I can respond a bit more after work. In the mean time don't spend too much time with DR. Google. Explain a bit more about your cancer location, how they found it etc. My wife has RC so I might be able to help.
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And thanks for liking one of my posts.... and that's how I got notification of your message and then read your post and that got the ball rolling here to get you some support.
Hello Patricia and welcome to the club nobody wants to be in. I am so sorry you are going through this, I know the shock. My husband has pancreatic cancer, and although it's in a different spot, it's the same kind of cancer (adenocarcinoma). If it's invasive at this point you will most likely need chemo but that will be dealt with in a conversation with your oncologist after surgery. It's good that your surgery is scheduled soon so you don't have to think of it for o long. Your job will be to go to sleep and wake up and then follow instructions. Many people beat this cancer, you will be one of them. You can do this.
Neal, Thomas like this comment
Thank you for your words of encouragement Deborah!! And I'm sorry for you and your husband. I hope he's doing well!
Deborah likes this comment
So if I am understanding your tumor is on the beginning side of your colon. My wife's was on the end of the colon in the rectum and the treatments are different. Rectal Cancer is colon cancer butt in the rectum and typically is treated with both radiation chemo than surgery than more chemo. I am betting that your cancer will be removed during the surgery and with a section of the colon. Pathology will tell you if or the extent of the spread in the colon and within the lymph node system. Once they know that they will stage you and determine if you need chemo. 5FU is the chemo of choice. You shouldn't loose your hair but will have other side effects which should be able to be managed. Has your oncologist recommend a CT and PET scan? They are very important to determine if it has spread and the imaging will be useful for the surgeon. My wife's surgery was different than yours you can go look at my past post if you'd like. It was hard I won't lie, but where yours is on the start of the colon you may not have to have an lileostomy. Do you know if your surgery will be robotic or laparoscopic? You will heal faster if it is. Drink lost of protein shakes to recover and heal after surgery and get to your feet and walk asap.

Good luck, you'll make it. Ask questions to the doctors and do not be afraid for a second opinion. Colon cancer is typically slow growing so you have that going for you. Early stages are very treatable. My wife is a stage 4. It's been a year and a few months now and she has no evidence in disease in her right now. It can be done, stage fours do make it through this, it will change your life for sure. Look for the positives and live day by day hour by hour if needed. Once you are on a plan you will feel like you are doing something. Remember no one here chose to be here the surgery and everything that you will go through will suck, but is necessary to beat the beast. Lean on those around you, come here to vent and ask questions. Good luck and God Bless
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Nathan thank you for your response. I'm not certain about anything at the moment. Oncology said they wanted me to have a PET scan yesterday or today but I never heard from them. I called their office but the phone went to voicemail saying they were closed. I'm upset because I feel it will push my scan back ANOTHER week or possibly two since I'm scheduled for surgery on Wednesday with a two day bowel prep no day and Tuesday! This just gives me too much time to think!
You’ll want the PET before surgery. You’ll have too much inflammation from the surgery and that will show up and could mask tumors. Will will also have to drink radioactive sugar and i think fast. My wife did three bowel preps the one prior to surgery was the worse. Let me know if you have questions. Either post or message me. I’m a caregiver but was very involved. We did learn that the only person who is going to care about your health is you. Sometime you have to push the doctors to get you in.
Thomas likes this comment
That is one reason I want to switch oncologist. She said we could wait on the PET until after surgery and the pathology report comes back. Then she said get it Thursday or Friday of this week but her office is to schedule it and I never heard from them. I’m wondering if they’ll call and tell me to go sometime today. So frustrated at this point!!!
If they do not do the PET than see if they will include your lungs and liver in your first CT. You need to develop a baseline image that can be used to compare with future images. Also have them draw blood and run your CEA blood marker, very important that they do this. One more thing have them do as much genetic testing on the tumor once its removed.

Hang in there. I remember that first four or five weeks being a mess, so much to get your arms around. You'll get there. How did they find the cancer, CT or colonoscopy?
Thomas likes this comment
Where are you having your surgery? In New Jersey or New York... are you near Rutgers? Just curious... I just looked...Mantua is only 75 miles from New Brunswick so I was wondering if you're going to Rutgers... I hope so..RWJ cancer center has gotten good reviews in the past

Who is your major moral support? Just wondering who is on your team.

I will leave you be...

I live in Connecticut near New Haven, so during my wife's pancreatic cancer we went to smilow/ Yale.... I was never overly thrilled with the oncology but the nursing was excellent. I grew up in New York

Ok...now I Will leave you be...if there is something you think I might be able to help with just let me know... Or if you just need to vent or scream this is a good place
Thomas likes this comment
Neal, my husband and I went to Penn this morning, canceled the surgery for tomorrow at our local community hospital and will follow thru with Penn!!!! I feel as if there is a weight lifted off my shoulders! I had to do nothing for this appointment but show up!!!! They coordinated everything!!! Going for an MRI on Saturday since the CAT scan I had done at the local hospital showed a “nodularity’ On my liver!! None of the doctors at that hospital mentioned an MRI to me when we both asked!!! Thank you so much for the advice AND support!!!!
Well...reading that brought a smile. Verrry glad you did that. Sounds like you are too. Good move.
There is much controversy about where I’m having my surgery. I am going to a small community hospital down the street which some of my family and ALL of my friends have an issue with since we live 15 minutes from Philadelphia. My husband wants me in Philly but I trust this surgeon. I do feel I want to seek an oncologist in Philly because something didn’t sit right with me when I met the oncologist on Tuesday and they never called me for the PET scan as they said they would. I guess that won’t be done until after surgery now. I am thinking about going to Cooper’s MD Anderson Center or University of Pennsylvania’s Abramson Center. Are you familiar with either? I just feel as if I’m being hit with a lot last minute. I’ve had too much time to think. My husband and my daughter are my main supports right now. My boys are a little withdrawn, I think they are afraid. And most of my friends are in healthcare which can work both ways, positively or negatively LOL!!!
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I can't urge you strong enough before, before, you have the surgery go to either one of the other centers that you mentioned.


Just keep in mind, that with the stress that you're under take that into consideration, and I'm not saying leave the decision up to someone else but I am saying maybe try to hear them a little bit more. I am much more in favor of a major Cancer Center than a small community hospital. Is it always better I am sure no. But, before you have the surgery I feel strongly that you should be evaluated by one of those other centers you mentioned.
And no, I am not a doctor. I am a retired physical therapist, at least I'm retired at the moment.
What about Fox Chase at Temple?

You or your family probably know a lot better than I do but just curious I was just reading about possibilities
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Vital Info

Posts

April 19, 2018

Mantua, New Jersey 08051

September 15, 1961

Cancer Info

Colon and Rectal Cancer

Invasive adenocarcinoma

April 7

Not feeling well,no energy,right lower quadrant pain

Will be having a hemicolectomy on 4/25

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