slatebreak

Hi slatebreak....hope you're doing well. How are your treatments going? Stay strong and focused!

I took 3charcole tabs 3x a day and imodium starting the day before chemo (FOLFOX) and continued til 3days after pump was removed I also started taking anti naesea pills every 4hrs starting the morning chemo started and continued til 3days after pump removal. I had no vomiting and the runs were contained to one day that was really bad. After my first accident I started wearing diapers the week of chemo. Hope this helps you but hang in there you can do it

Slatebreak, so sorry to hear you're having such a difficult time with chemo. Talk to your oncologist and nurses about this. Ask if you can take Immodium to help with the diarrhea (I also had horrible diarrhea...I used to joke that I didn't even get a 2-minute warning, it was like drop everything and just run!). Are you taking anti-nausea meds? I've never heard of dystonia, but just did a quick look-up. If it's neurologically related, it could be a reaction to the oxaliplatin, which is a platinum-based drug with tough side effects. Discuss every one of these side effects with your oncologist before you receive another treatment.

Hi slatebreak, I just wanted to say welcome to the website and that I am sorry that you need to be here. You have come to the right place though, there are some awesome people here and we are always here for you! It has really helped me to meet and talk to all the people here. They know exactly what you are going thru and how you are feeling better than anybody else can except for God. We are here to talk to, to cry to and even to vent to if you need to. If you need to ask questions we all try our best to answer any questions that you might have and if we can't we try to find somebody that can. Believe me we all have those days. I pray that your journey so far is going ok for you. Keep your head up and stay optimistic because you will see the end of the tunnel and you will be done with all your treatments. God luck and God bless!

Congrats on completing your first treatment! Being disconnected was so exciting! And taking a shower was wonderful! But then I'd crash for 12-15 hours. My son would be waiting for me when I got home from work (I used to get disconnected during lunch), he'd bring my things in from the car, take my coat, and tuck me in. Be very astute the next few days to document side effects because they usually are cyclical. Enjoy being bagless and the feeling of success now that you have one treatment under your belt!

Hi Slatebreak, just found you after your comment on my ques and read your story. Its all sounds like a scary, familiar journey - how the diagnosis changes and seems to get worse each time. My husband has Stage 4 Colon Cancer - diagnosed nearly 7 years ago. After the initial surgery, chemo and radiation he has been pretty well ( a few bumps in the road, mainly complications from surgery), until his recurrence in Oct 2013. he has just completed Round 9 of 12 chemos this time - and despite all the side effects - and in the context of chemo - is doing ok. So we have been down the road you are travelling. My husband is not very active here - but I am have been very close to it all - so if I can help you in any way - please let me know. xxx

Thank you for your comments. Cancer is a rough road to be on, trying to be happy while fighting it is even rougher, but it can be done. ~Never Lose Hope~

Good luck today in your chemo class. I hope they answer a lot of your questions. Did you get my email?

I just finished up me treatment for rectal cancer at Mayo here in AZ. Found out this week I have cancer in my thyroid. So back to Mayo I go. Best wishes on your healing journey.

How did your appointment go today with the oncologist? Did you get your questions answered? Do you like the doctor and feel comfortable and confident in their abilities? Hope it went well.

Some others things I've thought of to share with you....

Prior to surgery, I asked my surgeon what my stage was. He shrugged and said, at least I, maybe II, or maybe III or IV. I hated that answer. Knowing that other organs were not involved (thru CT scan), the only way to stage was to take lymph nodes during surgery and to biopsy the colon. Then of course, more waiting until after the biopsy results came back and it was determined to be Stage IIIA with 2/26 lymph nodes, but the tumor had not protruded through the colon wall.

Tomorrow, the oncologist should go over the results of all your tests. Take notes, keep them organized and make sure they match what your other doctors have said. Then the recommended course of treatment, which will probably be FOLFOX which is three chemo drugs, 5FU, oxaliplatin and leucovorin. It usually is about a 3 hour infusion, then 46-hour portable pump, so you will need a port. A newer treatment is Xeloda which is in a pill format. At the time, it had just been approved so my oncologist wanted to go with FOLFOX which has a very successful track record. Your oncologist should go over the entire routine and what you should expect.

When it comes to side effects, we've all shared that not everyone will experience the same side effects. We all handle it differently. You will just have to see how you tolerate the chemo and the side effects.

I'd take a tour of the infusion room - is it clean, organized and an environment you think you'll feel comfortable in? Will you see the same nurses each time? What are you to do if you have a question, call the doctor or the nurses? What happens if you get sick in the middle of the night or on a weekend? Does your oncologist have rights at your local hospital or will you have to go to a hospital further away in order to be under his watch?

Is there anything the oncologist suggests you do or not do during the treatment period? Do you like this doctor? Do you like his/her bedside manner? Do you feel comfortable and confident?

Would this be the same treatment that this doctor would recommend for his own loved ones?

Good luck and keep in touch.

How did you find out that it jumped from 1 to 3? Did they do more tests? Another pet scan? I'm curious as it has been 12 weeks with no chemo and that.is what I'm afraid of.. going from 1a to ?? Shouldn't they retest before they start chemo? So I get right dose? Was it blood test? CA125 markers?

just remember........ ~Never Lose Hope~

Thank you for you kind response. I have enjoyed supporting and coaching others through the scary time. I will tell it like it is. I had a tremendous support system and I am committing to giving forward and helping however I can. If you want to connect via email or text, contact GregP_WN and request my personal email from him.

I will tell you like it is, but you have to understand that everyone reacts differently to the same exact treatment. For example, another woman I met here on WhatNext had different side effects than I had. My hair thinned by more than 50% while she just had a bit of a receding hairline. She had extreme fatigue while I had more severe neuropathy. So don't assume that you'll experience every single side effect that's listed as a possibility. With that said, I did not have any problems with nausea (doctor gave me anti-nausea meds, but I only took them once or twice at the start and I think that was just nerves that caused the nausea).

Port - love-hate relationship, but a necessity. I would never consider doing chemo without one, and if you're on FOLFOX, you'll need it anyway. A necessary evil, but a complete life-saver, or should I say, vein-saver. It will make chemo so much easier by minimizing the needle-sticks.

Just set your mind on doing what you need to do to get thru this year. I was diagnosed in February 2011. Surgery in March, began chemo in May, finished last treatment in October and was declared cancer-free in December. My younger son was 15-16 at the time was terrified. I encouraged him to see it as a series of hills, valleys and mountains. We were going to take it one step at a time, one hurdle at a time. We knew what the prize was, 40 more years together as a family. And honestly, I can now go several hours without thinking about cancer. I pray that you will get to where I am now. Colon cancer is beatable and the chemo is doable. Personally, it wasn't a cake walk, but it wasn't miserable. If I had to do it again, I would.

I am now 2+ years cancer-free (have appointment with oncologist in the morning). My younger son now wants to be a doctor. We don't know why we have to go through these things, what the reasons are. But I know I'm a better person (not that I was a bad person by any means), a better mother, wife, daughter and friend. I appreciate every day, every little thing people do for me. I don't sweat the small stuff. I want to be an advocate, raise awareness for preventative screenings. If I can save just one life then it was worth what I went through.

Let me know how I can support you.

Slatebreak...when I was first told that I had to have chemo, I asked my surgeon how many different opinions I needed to get. He said, one. I couldn't understand that, but when my husband, who was of course, shell-shocked, talked to a good family friend who is an oncologist, he also told him that Stage IIIA colon cancer is about as vanilla as it comes. FOLFOX is a world-wide standard with a very good success rate. It's not awful. Yes, I had a few bad days, lots of yucky days, but most were tolerable when I worked, cooked, cleaned and went out with family and friends. It's a very scary time, of course, but build a good support network, surround yourself with positive people and put on your fighting gloves. Good luck and let us know how we can support you.

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/colorectal-colon-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

Follow Us on Twitter Click Here =>http://bit.ly/XExkce
Find Us on Facebook Click Here =>http://on.fb.me/zjBAPl
Our Pinterest Page with Resources=>http://bit.ly/12qVtEs
Our Help Page with instructions for the site->http://bit.ly/1aR5165
GregP 3X Survivor
Team WhatNext Community Mgr

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/colorectal-colon-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

Follow Us on Twitter Click Here =>http://bit.ly/XExkce
Find Us on Facebook Click Here =>http://on.fb.me/zjBAPl
Our Pinterest Page with Resources=>http://bit.ly/12qVtEs
Our Help Page with instructions for the site->http://bit.ly/1aR5165
GregP 3X Survivor
Team WhatNext Community Mgr

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter

So sorry to hear your miracle didn't turn out to be as miraculous as you hoped. Still, it sounds like it is all local so you should still be in good shape. I was actually glad to get chemo because I felt it was a reassuring cleansing I am 2 years out and my sister is 10 years out We both had invasion and lymph nodes!