Another Newbie here - Stage IIIC questions on treatment

[LHCwife]

Hello all,

I have been lurking since my colonoscopy and want to thank you for all the information you have provided here that has helped me understand some of the process this diagnosis brings.

My CRC was discovered during a routine screening my husband wanted me to have as I had recently turned 50, I had no symptoms in my mind. He lost his mother at a young age to crc. So needless to say coming out of sedation and seeing my husband crying was a shock. I also work at the hospital this was performed so that add a whole other level of stress while going through the initial processes.

I live in a rural area so I decided to go to the City of Hope in Southern CA which is about a 4hr drive, and well worth the drive, they are great there. It took about 7 weeks from colonoscopy to surgery, it seemed like time stood still. All during this time everyone seemed very positive that it was caught early, no radiation, probably no chemo etc. We were so certain, that my husband went ahead with his out of town business trip and I had a friend drive out with me to get my staples removed. My Dr. seemed a little nervous as he was removing the staples so I was beginning to think this wasn't good. So here I am Stage 3C with cancer in 13 of 31 nodes.

Kinda of long winded to get to my questions, I will be getting Folfox w/ Oxaliplatin, not sure I'm even saying that right or if all Folfox includes Oxaliplatin?

Side affects, does pretty much everyone get the cold sensitivity and neuropathy are the two basically the same thing and does that start pretty much at round one? All meds tend to make me nauseated, how quick does this come on along with fatigue. Would I be able to make the drive home alone after disconnect? reminder it's a 4hr drive.

and just to throw it in there, 13 nodes kinda sounds like high risk for reoccurrence?

Any info you could give me on the side affects would be greatly appreciated, sorry that we are all here and that many unfortunately have a lot of knowledge in this.

Thank you,
LHCwife

[mike1965]

I was in the same boat as you. Started out thinking we caught it early but after surgery and pathology I went from stage 1a to stage 3a. I just finished 12 rounds of Folfox two weeks ago. Had a clean scan and will have colonscopy end of the month. The hardest part for me in the early sessions was mentally. It made me angry and depressed. The last few rounds they reduce the Oxy due to neuropathy. I still have neuropathy in my hands and feet. It appears to be getting a little better. Hoping it goes away. I pray your treatment goes well.

[KElizabeth]

LCH,
I'm sorry you have to be here . Starting Chemo for the first time can be scary, but you'll make it through. Folfox is standard first line Adjuvant chemotherapy that includes 5FU (5 flourouracil) , leukavorin and Oxaliplatin. The Oxaliplatin can cause sensitivity to cold or hot and this could happen right at first infusion. You will want to have room temperature water and beverages ready, because drinking cold beverages could make you very uncomfortable depending on your personal reaction. Many people also have gloves by yhe fridge so they can avoid handling cold objects. The neuropathy sets in slower. For me I didn't have any neuropathy until after my 7th treatment. It was disturbing but not permanent. It's important to let your oncologist know when you begin to get neuropathy so treatment can be adjusted if needed. Really it's important to keep your oncologist updated on all the side effects you are having. Many times there are changes that can be made to help you manage symptoms.
For me Folfox was not too difficult. My tired days were the two days after disconnect. I don't remember much nausea, but lots of tiredness. I managed to keep working by doing infusion Wednesday with disconnect on friday so I could sleep all weekend. I would work Thursday and Friday with the pump on.
Everyone handles chemo different but you will find a way to get through it and manage your symptoms.

As for the possibility of return based on your lymphnode involvement, it's hard to say. That's why your Oncologist is having you do chemotherapy. The plan is to mop up any stray cancer cells to prevent reoccurance. Do the chemo then keep your follow up appointments to keep a close eye on it.
I know this is overwhelming. Hang in there.
KElizabeth

[Stewsbetty]

Side affects, does pretty much everyone get the cold sensitivity and neuropathy are the two basically the same thing and does that start pretty much at round one? All meds tend to make me nauseated, how quick does this come on along with fatigue. Would I be able to make the drive home alone after disconnect? reminder it's a 4hr drive. ,
LHCwife

I am sorry to hear of your diagnosis but glad that you have found this forum. It is so good to have others that understand and are able to offer information and advice from there experience.

From my experience (only done 3 rounds) the cold sensitivity kicked in as I was having my first IV session. In the box lunch the nurses provided there were some peaches. They had been chilled and they made my mouth tingle. By the time I got home after infusion, I couldn't drink room temp water without it feeling like gravel. Needed gloves to take anything from the freezer or be super fast. These both faded within a few days. Neuropathy in feet came at the second round on disco day. They got really red and it hurt to walk on my nubby rugs. This lasted about a week. They lowered my dose for this round as I had some issues in round 2 and I have had very limited side effects.

Other side effects I noted: your mouth gets a dried burnt feeling after a couple of days. It is good to use a mouth rinse right from the beginning. I was recommended to use Biotene. My skin on my feet peels. Using lots of lotion. Hair thinning - over half lost in 3 rounds.

I wouldn't recommend driving alone on disco day. I am tired for all three days of infusion. I do lots of sitting around staring into space. Not saying you couldn't do the drive but if you have friends that are willing to come (and learn how to disco! then you wouldn't need to do it twice) I would recommend it.

I know nothing about rates of recurrence. But am believing that the chemo is killing all the possible cancer floaties and that 12 rounds will make me cancer free for life.

Beth

[Nik Colon]

The "ox" in FOLFOX is oxaliplatin. My personal experience is in the link in my signature about my "ongoing tx" at the very beginning of the thread.
Everyone has some degree of difference on side effects and how their body reacts, but in general are similar. The cold/tingles/numbness, etc, are the most common with oxaliplatin. Best wishes

[CLD]

My husband also had 13 positive nodes. He is 21 months out from his diagnosis, has had clear scans since surgery, and the dr is talking about removing the port after next scans if they are clear. So yes, 13 is a lot of nodes, but that's what the chemo is for. From what I read, 80% of recurrences happen within 2 years of surgery, so we are on the right track and hopefully you will be too!

[kellywin]

This is such a hard time, I had a similar experience, initially they thought it was early, only after the CT & MRI did they see that it wasn't. Going from "hey it's early" to "sorry, it's not" is really rough. Every part is a roller coaster.

One thing I didn't see mentioned is asking about Xeloda (pills) - instead of the FU (pump), some people prefer the pills to having the pump. It's just as effective, the scheduling is different. This worked for me as I wanted to work full time as much as possible during chemo. But at least ask about it, just so you are informed and can make the right decision for you.

I was also a stage IIIC, although rectal so I got the added joy of radiation. It's scary, I know. Make sure to take the nausea meds even if you don't think you need them - easier to stay ahead of it, don't wait for it to hit. Overall, I didn't get really nauseous, not sure if it was because I was good about taking the meds or not. For me, the days right after chemo were like a monster hangover. Mine was probably worse because I couldn't handle the full dose of steroids.

You'll be fine, you can do it. It sucks, but it's doable.

[WriterGirl1969]

Hello all,

I have been lurking since my colonoscopy and want to thank you for all the information you have provided here that has helped me understand some of the process this diagnosis brings.

My CRC was discovered during a routine screening my husband wanted me to have as I had recently turned 50, I had no symptoms in my mind. He lost his mother at a young age to crc. So needless to say coming out of sedation and seeing my husband crying was a shock. I also work at the hospital this was performed so that add a whole other level of stress while going through the initial processes.

I live in a rural area so I decided to go to the City of Hope in Southern CA which is about a 4hr drive, and well worth the drive, they are great there. It took about 7 weeks from colonoscopy to surgery, it seemed like time stood still. All during this time everyone seemed very positive that it was caught early, no radiation, probably no chemo etc. We were so certain, that my husband went ahead with his out of town business trip and I had a friend drive out with me to get my staples removed. My Dr. seemed a little nervous as he was removing the staples so I was beginning to think this wasn't good. So here I am Stage 3C with cancer in 13 of 31 nodes.

Kinda of long winded to get to my questions, I will be getting Folfox w/ Oxaliplatin, not sure I'm even saying that right or if all Folfox includes Oxaliplatin?

Side affects, does pretty much everyone get the cold sensitivity and neuropathy are the two basically the same thing and does that start pretty much at round one? All meds tend to make me nauseated, how quick does this come on along with fatigue. Would I be able to make the drive home alone after disconnect? reminder it's a 4hr drive.

and just to throw it in there, 13 nodes kinda sounds like high risk for reoccurrence?

Any info you could give me on the side affects would be greatly appreciated, sorry that we are all here and that many unfortunately have a lot of knowledge in this.

Thank you,
LHCwife

Hi LHCWife.
As others have said, so sorry that you've had to join us, but glad that you found this group! Yes, getting that pathology after surgery can be a shock, especially when it involves scary words like chemo. I'm glad to hear that you went to a larger city / center for treatment. That's one of the best things you could have done for yourself.

Others have noted what the Folfox is, so I'll skip that, but speak to side effects. The important thing to remember is that everyone reacts differently. Five of us could tell you we had issues at round 4, and you could have them in round 1. Or you might hear 5 people say they had them in round 1, but you don't get them until round 7. Or never. Same thing on driving yourself after. Err on the side of caution, and have someone go with you - especially as you note it's a 4 hour drive (and you sound like you already are kind of leaning toward caution about that). If you feel fine driving, at least you have company. No one can predict how your body will react.

Try not to box yourself in due to 13 nodes. There are LOTS of Stage III and IV long-term survivors here. It's easy to let those numbers and pathology reports get you worried, but you have to just keep moving and not let those numbers get you stuck.

Personally, I went with Xeloda (oral) vs. 5FU (IV), but I am also not getting Oxaliplatin due to pre-existing peripheral neuropathy in both feet. One of the best pieces of advice I can give you is to drink a LOT of water. All the side effects I had were helped by this. It seems too easy, but it's true. Of course, when I was feeling a bit green here and there, the last thing I wanted was water, but thankfully there are lots of flavored and carbonated waters out now which I found extremely helpful. Personally, I had some fatigue by about round 2 (mitigated by staying in cool dark places most of the summer), some hand/foot syndrome (this is fairly unique to Xeloda - mitigated by drinking a ton of water) by round 4, and round 7 kicked my butt (pun intended) with some diarrhea (treated with immodium), but otherwise I've been extremely fortunate. I'm just finishing round 8 now, and I am still driving, still working full time, writing books and a Mom of a 5-year-old boy who just started Kindy. My surgeon called me a rock star. I don't say this to tell you it will be the same for you, just to give you some encouragement that it can be okay, you can get through it, and you can come out the other side.

Keep breathing, keep moving, and keep going. We're here for you.
Hugs and Prayers,
Tracy

[Marylandmaniac]

LHCwife

Sorry to hear you are going through this. I just finished my 4th round of FOLFOX. I was petrified the first time I went in. I thought every side effect would get me and anything that could go wrong would. Other than cold sensitivity (wear gloves going in frig or use nails and go quickly) and a burnt tongue feeling the first round, it wasn't that bad. I used a mix of baking soda and water to swish my mouth (member on here recommended it) which helped. I also got Biotin mouthwash and the Magic mouthwash (that is a prescription). I didn't have the mouth issue after the first round. I take a lot of supplements which I cleared with my doctor and even met with a nutritionist to tinker some more. I think it is has helped me. You may want to get the "Definitive Guide to Cancer. An Integrative Approach to Prevention, Treatment and Healing" by Lise Alschuler 3rd edition. I got it used on Amazon. I find it helpful.

[LHCwife]

Thank you all so much, your advise and information is invaluable to myself in dealing with this new diagnosis, as it is scary and I am the type of person who wants to be educated in what to expect and what the options are. i have my first two rounds scheduled and will change the timing of treatment if it seems to interfere with my work and life too much, my first question at my appt will be trying to figure out if I cAn at least get disconnected closer to home.

Again, I thank you all for the time you took to respond and offer help.

[Sams wife]

After a few weeks, my husband ended up getting fluids every other day. If you can get disconnected closer to home they will probably give you fluids if you need them too. His was probably from radiation or thrush tho.
And he wasn't on oxy. He passed out with low blood pressure (dehydration) so he didn't care to drive much after that. 4 hours is a long ways. I think I'd take someone

[Nik Colon]

About the disco. I had a disco nurse that came to my house, insurance paid. I would ask about it.

[jhocno197]

A good tip is to take your nausea meds before you ever actually feel nauseated. Also, sometimes it takes a bit to find the right ones for you, so if whatever you have first doesn't help enough, tell your doctor asap so you can try something else.

[BeansMama]

I generally feel somewhat off after a treatment and I am very tired. You will have a set of side effects all your own. I would definitely have someone with me especially with a 4 hour drive.

Staying hydrated is key, like Sam's wife 's husband I have started getting iv fluids at disconnect to avoid since I have issues drinking enough.

Listen to your body, sleep when you need to sleep etc. Also talk about the side effects you have with your onc. They will adjust or prescribe what they need to keep the side effects at bay.

I will add you to my prayer list, I hope treatment goes smoothly for you.

[jens22]

I'm 6 years cancer Free stage 3 in teh same boat you were. Found on rountine Coloscopy. Here's my quick 2 cents.

bring a friend to chemo to dirve you home...it's a long drive and peole like to help. Once you know how y ou will feel you might bfeel differently.
keep hydrated it makes everything better.
Learn to Disconnect yourself or have some in the sommunity help you. ( You don't want to do that 4 hour drive 48 horus later.
Oxi is the strangest drug...Cold sensitivity is weird. Room temp drinks and gloves to take stuff our of the fridge. for coule days after chemo.
Ask for Zofran and Compazine to have in the house in case you get nauseated. ( I used it rarely)
Listen to your body. I didn't get half of the side effects that I read ABout.
It's ok to be scared..this is a very scary thing.
It's ok to laugh too...My faovrite story was after my first chemo my husband and I went to get the Compazine and he forget his credit card and left me in the drug store...I was sure the chemo was going to kick in and I was going to pass out....I didn't...wasn't even dizzy.
You job during chemo is to get through chemo.