For those just beginning the treatment journey

Im in the last sprint of the marathon here to hopefully be NED!!!  Thank you so much for your post today.  I will find out wed when adjuvant folfox will begin.

Congratulations on the good news and the update.  It's always good to see members from the board come back and give an update to how they are doing.  Happy early birthday and enjoy your day - you deserve a special day.

Kim

SophDan2 said:

In the earlier stages

Hi Robin,

During the first 4 treatments I too went back to work, but as the cumulative effects of the chemo buit up, I made the decision to focus on my health. Fortuntately I did have long term disability (no short term), so it cost me initially, but it was worth it. After the treatments were over I went back to work.

You can only do what you can do, your body will let you know what you can do.

Goodluck Robin, onyour remaining treatments.

Barry

Just want to say Thakn you Barry for the encoragement.

Take care and may you stay NED

Robin

Hi I'm 38 - 39 tomorrow and I was super sick early Feb 2-5 but no GI symptoms. Ended up admitted to hospital where it was also discovered that I was anemic. They threw every test at me but could never find a diagnosis for my cardiac and breathing symptoms. My husband swears I had Covid before it got crazy here. They ended up doing a colonoscopy to find source of anemia which I found out 1 week later was cancer. Referred to Cleveland Clinic and had a partial colectomy Mar 30. I'm healing well but still not tolerating food well. My surgeon called Monday and stated good margins were found but that 5 of 22 lymph nodes were metastatic. Chemo at the beginning of next month to start. He is stating Stage 3 since it went to lymph nodes - also attached to abdominal wall that he removed. I am just getting started in this rodeo and have been trolling this site. It is excellent!! CT scans did not show any other organ involvement though nodules were noted on my lungs - they apparently only concern me not my doctor. Love hearing the success stories of course!! 

Barry, I received close to 45 chemo treatments. I am not anywhere clise to NED. I am looking for the magic secret in how become NED...............,.

Annabelle41415 said:

Update

Congratulations on the good news and the update.  It's always good to see members from the board come back and give an update to how they are doing.  Happy early birthday and enjoy your day - you deserve a special day.

Kim

I just found this forum and your posts in a search for info on side effects of chemo. I'm a long-time survivor -- 33 years!-- of colorectal cancer, diagnosed in 1986, with surgery, radiation, chemo (pioneer treatment fior it back then). No forums back then. I have recently had not a recurrence but, big surprise, a new colon cancer, presenting with very different symptoms. Stage 2 but with a T4 tumor. Surgery in February (colostomy), and today, mid-April 2020, I started chemo with oxilyplatin. It's a different chemo than I had back in 1986 and ayy I did not expect to have such cold sensitivity and tingling!! It has been very helpful to find your post, so a big thank you.

jandjinco said:

newly finished chemo, but still with side effects

I just finished (4 weeks) ago a 6 month regimen of Folfox 5FU and still feel the side effects. I had stage 3C Colon cancer diagnosed with a second tumor in my cervical spinal cord which require a C4-7 Laminectomy  and apparently the surgeon had to play around with strands of the cord to get the entire tumor (cancerous but benign) out. I went to hospital Aug 4th last year for belly pain, had an emergency appendectomy  that night and woke up with a canc er diagnosis and a bowel resection. The tumor had not shown up on CT scan so it was a miracle that the appendectomy had compliocations and the surgeon ended up seeing the tumor and removing it. PE T scan showed 2nd tumor in spine , so another surghery on Sep 30. In hosp 14 days after this one til I could ambulate on my own. 

Long story in between but went back to work the Monday before Thanksgiving and have been working since(  at home since the C ovid outbreak)

I tried to start a support group at my new hometown, but nobody showed up, so here I am at my wifes insistence.

I have some significant persistent side effects and I will try not to be too graphic:

My fingertips are numb( you can probably see wheere I gave up retyping all the mistakes)

I forget words and have to explain things.

Everything that touches my bare skin feels cold.

Legs are numb from mid-thigh down including most of my feet ( could be spinal surgery)

It feels like a knotted rope is up my butt and wrapped around my privates and it pulls somewhere every step i take.

I waqlk like a zombie (without arms raised) and would probably get shot if the apocolypse ever happened.

 

I just had my post treatment CT scan and am waiting for an appointment (Covid delays) to get results.

Can someone tell me if the side effects go away? When? Will I ever feel normal again?

 What does NED mean?

John

I am glad that your wife sent you here. 

Just an idea. If you could start your very own thread, here  FORUM HOME PAGE    that way we can all reply to you directly, and your post wouldn't get lost amonst the other responses to Barry's thread.  

NED means No Evidence of Disease.  We all want to hear those words. 

As for long-term side effects, yes, they persist. Of course it is different for each individual, but I can tell you that I, persoanlly, still suffer from neuropathy in finger tips and legs - from the mid calf down.  Brain fog does get better, but I still loose myself in the middle of a sentence. The knot in your butt, sensation could very well get better as you continue to heal. If it doesn't, I would mention it to your surgeon.  Mine went away, and only comes back when I get myself constipated and do the old straining thing.  I have several other side effects, some from the radiation treatment. And, I am SEVEN years post treatment and SIX years NED next week. 

Hang in there. 

Look forward to seeing you post your own thread. 

Tru