Mary Jane's Colon Cancer Journey

Can I ask what chemotherapy you decided? I start capox in a few days. Sorta nervous.

My doctor put me on three months of FOLFOX... 1 week on, 1 week off... Through October 22. On Mondays, they do my blood work to check my red and white blood cells as well as other items. If everything is ok, the pharmacy mixes my meds. I received an antinausea med first and then an infusion of 2 chemo meds over 90 minutes. The cancer center has separate cubicles for each patient and guest with a privacy curtain and TV. My recliner also has a heater with 3 settings. They bring drinks for my husband and I; and I get a free lunch voucher. After the 90 minutes, I have a third medication attached to my port and a pump which I take home for 46 hours. I come back to the hospital on Wednesday mornings and they detatch the pump until my next round in two weeks. Since this was only my first cycle as of today, I haven't had many side effects yet. We were able to go the senior center to play pinochle until 3 pm after our hospital appointment today. I have to make sure I drink room temperature drinks .. I make protein smoothies using almond milk and whey protein powder and the cold milk was irritating my throat when swallowing. So I have to let it warm up. I also drink SLUR and soda sense mixed together at room temperature ... I don't carbonate the soda sense, I just pour some in for flavoring. Keep it in my large yeti cup by my recliner to sip on. I also bought some no sugar, high protein energy bars on Amazon to take to my long infusion days and other places for a snack. You are supposed to eat several small meals throughout the day instead of 3 major ones and keep hydrated. Hope all this info helps! Blessings to you on your personal journey. God is our Great Physician! By His Stripes we are healed! Mary Jane

Ty for your great advice, that helped my anxiety about starting chemo infusions. I feel more confident that I can handle this. And you're definitely right God is the Best Physician!

I'm happy you are feeling better about your treatment options today... Just take it one st ep at a time, day by day, hour by hour. Listen to your body and don't hesitate to call upon your caregivers. Have a blessed day! 🙏🥰 Mary Jane

Oral chemo or standard chemo?

Standard chemo

Mine is both, infusion then two weeks of oral. One week off, then repeat cycle. Mary Jane did give great advice, it helped ease my anxiety.

Thanks so much Mary Jane for sharing your journey so far! I get my port placement this week & I starting FOLFOX & the pump process the following week. It’s encouraging to hear you’re having few side effects, as that is what keeps me up at night…not knowing. Was your port placement & having the port uncomfortable?? So much we don’t know creates more anxiety.

The port placement went fine... Just a local anesthetic. Laying flat on a bed in a small operating room. There was an overhead ultrasound machine to help the doctor guide the small tube and I could feel the sensation of her making small internal sutures to hold the tubing in place as she fed it through the main incision. 2 incisions on the outside... One near the neck and one where the port went in... Both sealed on the outside with surgical glue, no stitches. Had to take Tylenol for a couple of days after the anesthesia wore off and the glue was a little itchy, especially the incision at the fold near the neck.

Thanks Mary Jane! Knowledge helps! Praying my chemo journey goes as well as yours has so far!

Just had the start of my 3rd infusion today. FOLFOX. So I went home with the pump until Wednesday morning. Worried because of one blood test... My carcinoembryonic test...embryonic antigen test came back quite high with a large spike from 2 weeks ago... From 5.6 to 12.8😔. From what I read on the Internet, this could mean the treatment isn't working and/or the cancer has metastasized. I sent a message to my oncologist and hopefully will hear back from him soon regarding his insights.

Another blood test I’ve never heard of… I understand they test every week - once before chemo infusion & then again on the off week - to be sure it’s working! But it sure keeps us on the edge of our seats never knowing what’s next! Please keep us updated on how this goes! Prayers continue MaryJane 🤗🙏🏻🤗

Hi Karen, 3 blood workups are done on my chemo day. I arrive early on my infusion day for that. There is a blood draw to see how the platelets are doing, red, white, etc. There is a comprehensive blood draw, for glucose, potassium, and other items, and then the carcinoembryonic antigen draw which from what I gather could show the presence of cancer in the body depending on the range. The last two infusions, I was low in potassium, so I was given a 1 hour drip of that before the Chemo and after my premeds--antinausea and steroids. The doctor had also prescribed a potassium electrolyte pill for me to take at home which I have been doing and the levels were just around normal. But they wanted to give me an extra boost with the IV drip. On my hospital portal, I can look up my blood test results right away and see the levels and trend graph for each item. I can also Google the test results and see any information there about any particular test from reputable places like mayo clinic, American cancer society, Cleveland cancer center, etc

Hi MaryJane, I’m reaching out to see how your journey has gone since August? I’ve had my 1st FOLFOX chemo session with the pump and the session itself went well until a few hours before I was to go in for the pump disconnect. It was like I hit a wall…extreme stomach pain. I managed to get there & get the disconnect done. They gave me a bag of fluids & another steroid. Didn’t really help. The next few days were rough. The following week when I went in for blood tests which all turned out good, they decided to decrease my FOLFOX by 20% & discontinued the pump. That should be my next treatment next week. Hoping for a better outcome. Have you had any similar issues or side effects with yours? I’ve felt pretty good for the last week & really dread next weeks procedure. Especially when my CT done right before the 1st one shows “no evidence of disease”.

If they discontinued the pump, how are they going to administer the FOLFOX?So thankful the CT scan showed no evidence of disease 💜🙏🙌. Sorry to hear of the side effects you experienced. I haven't had too many side effects... A couple days I experienced nausea and took some antinausea pills. My scalp gets sensitive especially after shampooing but I don't wash it as frequently. I use Johnson's baby shampoo and spray with stay in coconut conditioner which is supposed to nourish the hair. I have more neuropathy in my hands that lasts longer past the treatment days. My biggest concern is that my carcinoembryonic antigen kept rising so my oncologist moved up my CT scan with contrast to this past Monday... The results didn't show any metastasis in any surrounding organs praise God! 🙌💜There were a couple very small cysts on my liver too small to make a determination and I have some irritated kidney stones and some gallstones. I need to talk with my oncologist Monday before my infusion to discuss the CT scan results. And I of course will have more blood work so we will see what the carcinoembryonic antigen level is at then.

Hmm…I understood the FOLFOX was what I was receiving in the chair for 4 hours while I was there. I thought the pump was just a slower drip of the same thing, but I’ll have to clarify that on Tuesday. Thanking God for your good news on your CT scan! ❤️🙏🏻❤️ We’ll take all the good news we can get these days, right? A day at a time is all that God gives us and as we walk this journey I understand why! Hoping the coming week has good news for both of us!

Karen... It is my understanding that FOLfOX is made up of 3 different medications....so when you say they are taking you off the pump, do you mean when you go home for 2 days? I believe you are given 2 meds while you are at the infusion and a third medication goes home with the pump.

Mary Jane, I am getting all 3 in the chair. The last one that they previously gave me in the pump - they are now slowly “pushing” with a fat syringe. That worked much better on my body than the pump, so I hope they’re going to continue that “recipe” this week. I’m really grateful for the “off week” to get a chance to “remember normal” & catch my breath before hitting it again. 🤗

I see Karen.I hadn't heard of that before... Getting all 3 meds on the same day....

Yes, I clarified that yesterday at my infusion & they confirmed that while I’m getting less, I’m still receiving the FOLFOX therapeutic dose and with the syringe push at the end of my infusion I am getting what I need. Since my tumor was removed prior to discovering it was cancerous & was removed with clear margins, I think maybe my protocol would likely be different than if I still had the tumor and they were trying to shrink it prior to surgery, idk…🤷‍♀️ They did the CEA test for me yesterday -(thank you for educating me on this test) as my last one was only 1.7, that was prior to chemo beginning, so I want to see what it is now. I won’t have those results for a few days….🙏🏻 So another day in the journey….

Thank you for sharing this update about your treatment journey. Starting chemotherapy is a significant step, and it takes real strength to navigate through multiple surgeries and now begin this next phase of treatment. Many others in this community have walked similar paths and understand the challenges that come with each milestone. Wishing you the best as you move forward with your care plan, and hoping you'll continue to share how things are going when you feel up to it.