Newly Diagnosed. Nervous about Chemo

[BondGirl11]

Hi everyone! I'm new here. I was diagnosed with colon cancer on March 10th of this year. I'm 31 years old and never thought colon cancer would be one of my worries. I had a colon resection May 16th and it went well! I was back to work within a week and I'm feeling great as of now. I had a great surgeon although he wasn't the most personable, and my oncologist is awesome as well.

My pathology report revealed that there were 23 lymph nodes removed and one was affected which meant I needed chemo . I just received the approval to get the oral chemo Xeloda, which my onc said he would use along with oxaliplatin as a maintenance therapy for six months. I was just curious as to how bad the side effects were. Oh and is it possible that it can be over before the six months is up? I know everyone is different but I'm sure there are some similarities. I must admit this is rather scary for me. I've never been hospitalized, had any major issues, never even broken a bone in my entire life so this is still a shock for me. I would appreciate any advice I can get. God bless

[awc124]

I too was just diagnosed but I have 2 effected lymph nodes and have the same questions as you. I am 43 years old.

[jens22]

I'm sorry that y ou have to go through this. Do you have a port or will you be doing OXi wihtout one. I hear it's hard onthe veins. No ...it will be a full 6 months or longer...SOmetimes Chemo gets delayed because of low counts...don't let that discoruage you. Just because it's oral doesn't mean you should take it lightly. for the next 6 motnhs you need to heal, rest, and let the chemo work. It's har not to be nervous as you just go over surgery and are probably feeling good again. Chemo is Chemo...but now a days the side effects are so much managable. Nausea is managed with pre meds and As needed Meds if Needed.

OXi is a tough drug. You need to be aware of Neuropathy and you will be asked to rate it prior to each chemo. If you notice lasting Effects its' imporrtant to tell your Oncologist. You will get through this!!

[Nik Colon]

I have a link in my signature about my experiences. The first couple posts describe my rounds of folfox (w/oxaliplatin). You will be doing xelox I see. I never had the pill form of 5FU (xeloda) but heard more about hand/foot syndrome with that. You can also search for xelox, and oxaliplatin, and xeloda on here to find other threads discussing those. I'm sure others will tell you their experiences also. Best wishes.

Just make sure you tell the onc all side affects in case they need to reduce dose or even stop one if really bad.

Also, I have another link in my sig how to add one.

[juliej]

Welcome, BondGirl11! My diagnosis came out of the blue too. I was a healthy, veggie-eating runner and had never been hospitalized before for anything. It's hard to get your head wrapped around a cancer diagnosis, but it sounds like you're doing very well - tumor gone, only 1/23 nodes affected, and feeling strong after surgery!

I also had Xelox, which is the name of your therapy. It's a combination of Xeloda and Oxaliplatin. Everyone reacts differently to chemo so it's hard to say what your side-effects will be. Also, side-effects vary somewhat cycle to cycle. Sometimes they're better or worse for seemingly no reason. That said, they are some side-effects that almost everyone gets.

With Xeloda, that's hand-foot syndrome, also called HFS. It causes redness, tenderness, and possibly peeling of the palms and soles. You will need to modify some of your normal daily activities to reduce friction and heat exposure to your hands and feet. You will also need to keep your hands and feet lubricated. Most people use Bag Balm, Eucerin, or Udder Cream - something heavy that really coats and protects your skin. Avoid things like washing dishes in hot water, hot baths, tight fitting shoes, etc.

With Oxaliplatin, the number one side-effect is something called "peripheral neuropathy" or cold sensitivity. This causes numbness, tingling, and cramping of hands or feet and is often triggered by cold. This symptom will generally lessen or go away between treatments. However, as the number of treatments increase the numbness and tingling will take longer to lessen or go away. Your oncologist will monitor this and if necessary lower your dose or stop treatment early. The cold sensitivity occurs within hours of the infusion (mine started while I was still in the infusion chair!) and typically lasts several days. Touching anything out of the refrigerator, freezer, cold section of the grocery store, or washing your hands with cold water will set off the numbness and tingling. This affects a lot of things in your daily life -- drinking cold beverages, stepping on cold tiles on your bathroom or kitchen floor, etc., so plan accordingly (wear gloves to get things from fridge, wear slippers on tile floors, keep room temperature beverages conveniently on your counter for easy access).

Chemo is far from fun, but we can give you tips to get through the worst of it. You might ask your oncologist about taking either B6, Acetyl-L-Carnitine, or Glutamine for the neuropathy. Several people here, including me, have had good results from taking them during treatment or shortly afterwards. Or you might ask to see an "Integrative Medicine" doctor. They advise patients on which nutrients to take to lessen the side-effects and damage of chemo. I would also recommend getting a medi-port because oxaliplatin is hard on your veins. It's a simple day surgery to get one and if you get a PowerPort (ask for it!), you can use it for CT scans too, which is nice.

No matter how the doctor delivers the news, cancer is a devastating blow. Then you have the privilege of telling your family and friends, tolerating chemotherapy and dealing with a roller coaster of emotions. Sometimes letting it all hang out can be the best way to deal with an enormous obstacle. So please feel free to come here, ask questions, get support, or just vent! We're here for you!

Hugs to you!
Juliej

[mike1965]

BondGirl11 my situation is very similar. I had Lap LAR surgery and all went well. They said cancer went to lymph node system. Was debate among pathologists if it went to a lymph node. Oncologist recommend 6 months of FolFox for an aggressive treatment plan. I had choice of Xeloda pills or infusion pump for 48 hours. I chose infusion pump since I do not like pills. I am starting my fifth treat this Monday. I do have cold and hot sensitivity. Mouthwash makes my mouth hurt. I get diarrhea and some constipation. The physical effects have been manageable. The hardest part for me sometimes is the mental part trying to stay positive. I pray all goes well.

[Sunwaterandsky]

Hi Bondgirl11,

I had the same kind of chemo and fared quite well. I was paranoid about the hand/foot problems and layered them with cream 2-3 times a day and only had one small peeling section that quickly resolved. After the first Oxaliplatin infussion, I had unbelievable pain in my arm and insisted on a port - they refused by installed a PIC. The Oxaliplatin was the problem for me - it totally knocked all the energy out of me and on my 7th treatment, I had an allergic reaction. They decided to skip the final Oxaliplatin and I felt dramatically better with just the xeloda. I had neuropathy - mostly in my hands but this has completely resolved.

For me, the hardest part was the absolute exhaustion I felt. I had to force myself to go out for short walks everyday. I was incredibly lucky to have a supportive employer who gave me full pay for the entire time I was off - and allowed me to take extended leave.

I found this forum very helpful when experiencing side effects as my doctor's didn't recognize all the side effects I had. It also allowed me to explore what I was experiencing without scaring my family.

[horizon]

Hi everyone! I'm new here. I was diagnosed with colon cancer on March 10th of this year. I'm 31 years old and never thought colon cancer would be one of my worries. I had a colon resection May 16th and it went well! I was back to work within a week and I'm feeling great as of now. I had a great surgeon although he wasn't the most personable, and my oncologist is awesome as well.

My pathology report revealed that there were 23 lymph nodes removed and one was affected which meant I needed chemo . I just received the approval to get the oral chemo Xeloda, which my onc said he would use along with oxaliplatin as a maintenance therapy for six months. I was just curious as to how bad the side effects were. Oh and is it possible that it can be over before the six months is up? I know everyone is different but I'm sure there are some similarities. I must admit this is rather scary for me. I've never been hospitalized, had any major issues, never even broken a bone in my entire life so this is still a shock for me. I would appreciate any advice I can get. God bless

Everything you mentioned mirrored what was the case for me. I was more anxious about chemo than I was about the surgery. Juliej did a great job listing side effects. Another one I had that no one warned me about (learned what it was on here thank goodness) is "first bite pain". After your first bite of a meal my jaws would really hurt and then after that I was fine to eat. Everything about chemo sucked BUT I was able to keep working and going to the gym during it.

Here's a thread about my chemo worries and completion:

viewtopic.php?f=1&t=24762&hilit=horizon+six+months

I was dead set against a port at first. Here's the thread that changed my mind:

viewtopic.php?f=1&t=24924&hilit=horizon+port

[BondGirl11]

You guys have no idea how much you've helped with just a reply. I'm currently reading through the links you've provided for me. Hopefully I will make the right decision. This is so scary but hearing you guy's stories put my mind a little more at ease. Thank you so much

[NoFear32]

Your story sounds similar to mine - I was 32 years old when I was diagnosed last year and had zero history (and zero family history) of hardly any major medical conditions, let alone cancer! My stage 3 cancer diagnosis with 2/55 lymph nodes involved was shocking.

After I recovered from surgery, I started FOLFOX (via the power port in my chest) 6 weeks later. I had a little idea about what to expect so I wasn't too nervous, but it ended up being a terrifying experience my first two rounds. I was switched to XELOX (Xeloda + OXI) for rounds 3-8, then stopped chemo after round 8 was done. Total time on chemo was 8 rounds over 3 months (June - Sept), with one week on and one week off rotation.

Once I was on the XELOX, it wasn't too bad in the beginning. Mostly fatigue, cold sensitivity and nausea/loss of appetite were the side effects. Towards the end of it (rounds 7&8), the side effects were becoming harder to deal with and more severe to the point where I was actually laying in bed the entire week I was on chemo fighting the nausea and overall "bleh" feeling inside my body. Honestly, those last rounds made my body feel like it was melting from the inside and it was awful Good news though is that once I started feeling that bad my onc stopped the chemo

It has now been 9 months since I stopped chemo and the only side effects I have left are neuropathy on the bottom of my feet (feels like I'm walking on cold stingy mushy sand when I'm barefoot), periods of extreme fatigue (happens every once in a while where I just have zero energy no matter what I do), and joint soreness in my hands and knees. Many of these symptoms and other symptoms that I used to have are starting to get much better. For example, in December I remember I couldn't stretch my hands out without having a painful tingling sensation radiate back to my shoulders, but now that tingling is completely gone.

Just remember that it is very important to tell your onc about all side effects or strange things you are experiencing and to make sure that you eat something before you take the XELODA (I ate a slice of cheese), and that you have plenty of nausea medication prescribed to you during the OXI drip and during the week you are on XELODA.

God bless you and good luck!

[LaciK]

My experience is similar so far to other posters (I am currently on round 4 out of 6 Xelox) except that my hypersensitivity to cold is so acute that I cannot eat or drink anything room temperature without my mouth getting numb for at least a week following my Oxi infusion. Although I have had very little hand or foot issues so far.

My oncologist told me that the adjuvant chemo will significantly reduce my chances of a recurrence (although I have rectal cancer Stage 3b) so it might be different for you. What helped me make the decision was to directly ask him what the percentage chances of recurrence were with and without the adjuvant chemo.

Good luck and take care.

[kellywin]

As others have said everyone's experience is different, some tolerate it better than others. Here are some of my thoughts. I had rectal so Xeloda with radiation first, then after surgery was supposed to be 6 rounds of Xelox. I did 5, last one Xeloda only.

• IV Infusion in Vein - I did it, I didn't want a port. Some people have negative experience. I'll say some infusions kind of sucked, but others were fine. One arm tolerated it better than the other. If you're going to do more than 6, I'd probably get the port.
• Steroids - I couldn't tolerate a full dose, made me want to crawl out of my skin. My doc lowered the dose, but warning, the "feeling like shit" hits you faster.
• Xanax - get some if you don't have it.
• Norco - see above. Take it.No
• Hand/Foot - never got it, never even lotioned my hands or feet outside of occasionally. But, I'd recommend doing it just in case.
• Cold sensitivity - to me this sucked the most, it made me really angry, at first it didn't last that long, but each time it lasted longer. Even breathing in the cold AC air closed up my throat, last time was scary and my doc decided to skip the last round.
• Generally feeling like shit - the chemo made me feel like general shit starting from that day and lasting a day or 2, some were better than others, I still worked full time, but did have to take some days after chemo off.
• Neuropothy - crept in after chemo was over. I had tingling, claw hands, and twitching during chemo, but neuropothy can be sneaky.
• Crying - this one sucks if you get it. Prepare to have your eyes really hurt when you start to cry. Odd side effect and one that pissed me off because this is a time when you need to cry!

I probably posted what others said, as I didn't have a lot of time to fully read the responses. Good luck.

[waw4]

Here are my reflections BondGirl.
1. Chemo drugs are harsh & kill all fast-reproducing cells, so they're not like taking aspirin or anti-biotics.

2. The effectiveness of chemo drugs is sort of a probability game and their potential serious side effects are also sort of a probability game, so you have to decide on the risk/benefit ratio—that is are the odds it will significantly help you worth taking the risk you will experience serious side effects; or let the oncologist decide for you.

3. Are you a person who just does what the doctor says? If so you will do 12 sessions as they are not making up their mind individually about your case, they are just following a protocol they all follow which says to give 12 sessions.

4. If you are an independent thinker and do your own research you may read of studies which say 9 treatments are as effective as 12 and have a lower probability of serious side effects. The more treatments you have the more likely you are to experience side effects.

5. if you are an independent thinker, you should consider researching all the drugs they are giving you to include the steroids & the anti-emetics.What are their side effects; how long does it take your body to metabolize them—things like that.

6. Oxaliplatin cold sensitivity neuropathy is temporary and generally avoidable in my experience.

7. On Oxaliplatin caused peripheral neuropathy, NIH says, "Oxaliplatin use in palliative and adjuvant treatment of colon cancer is frequently limited by cumulative neurotoxicity, leading to reduced quality of life and decreased dose."

8. Peripheral neuropathy is nerve damage and it can begin during treatment or afterwards. It's like you're wading into the ocean and the slope of the bottom has a steep drop off some distance away from shore—you just don't know where it is. One more step (treatment) and you could walk off the edge.

9. Other research might tell you people who take this or that supplement (say curcumin or aspirin) have positive results, but your onc is probably not going to mention this to you. He has to follow standard protocol, for insurance or corporate reasons, and these are not in the standard protocol.

So I'm a NED Stage 3 colon cancer for 6 years.
Did surgery help me? Yes.
Did 5FU (fluorouracil) help me? I don't know.
Did Oxaliplatin help me? I don't know.
Did Oxaliplatin give me peripheral neuropathy? Yes.
Do I still have significant neuropathy? Yes
Did chemo help me? I don't know.
If I had it to do all over again, would I do chemo?
Now that's a tough question!

Best wishes to you, however you proceed.
-Bill

[Kerrywal]

Very sorry to hear that you was diagnosed.
My husband is stage 3 rectal cancer and just. finished 31 treatments of radiaton and Xeloda. He had to take 11 pills in the morning and 11 pills at night. He flew through it like a champ. No side affects whatsoever. It's your attitude that matters most. Tell yourself every day that you are stronger and you will beat this.
Best if luck to you.

[Pita]

Good Luck to you (((Bondgirl))) I haven't had too much problems with chemo, headache or fever sometimes and it makes me very tired. Would I do it again? Yes because I believe it's keeping the 2 mets in my lungs from growing/spreading, may not be true but I'll believe it.