re: In need of some encouraging words for friend

musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
My friend will begin his radiation (rectal cancer) and chemo (Xeloda) this Monday. He is scared, to say the least. The long list of side effects for both treatments is overwhelming. He's afraid he'll have to stop working, lose his hair, become impotent (a couple of docs told him this was a given), won't be able to play his bass due to hand/foot syndrome - the list is long for all his worries. He doesn't have the internet but I can print him anything that is posted. Thanks so much for being there.

Comments

  • houseofclay
    houseofclay Member Posts: 63
    #2
    If your friend would be interested in talking with someone who has done throught a similar situation, the Colon Cancer Alliance ccalliance.org has a buddy program where he could interact with someone over the phone (or in person depending on your location). My husband did not have many issues with the radiation until the last 8-10 days but he was not on Xeloda, so I can't speak to the specifics of that drug.
  • nanuk
    nanuk Member Posts: 1,358 Member
    #3
    Suggest that you word search Xeloda on this site to access previous threads from folks who have experienced the drug. also, the list of side effects are scary, but each person is affected differently. Most continue life as usual, and there are medlication to help with most slide effects. I believe the hand-foot syndrome is associated with Oxaliplatin (SP) and there is a
    supplement he can take to minimize this effect-(ask the Doctor) I'm sure you will get responses from people who are/have been on Xeloda. Nanuk
  • crazylady
    crazylady Member Posts: 543 Member
    #4
    Hi,
    I was on xeloda both during radiation and after surgery. My radiation side effects were tiredness and toward the end burning during urination which was easily solved by medication. I was on a low dose of Xeloda and had some mouth sores and hand foot syndrome, but nothing najor. After surgery I went back on Xeloda with a higher dosage. The hand foot syndrome was much worse so my oncologist played around with the dosage until one was found that worked for me. I still had hand foot sydrome, but it was workable. I had a minimal amount of Nausea, also easily controlled by medication. I also experienced mild neuropathy, tingling in my hands and feet. That took longer to go away, but did get better with time. I never lost my hair, it just thinned. No one could tell except my hairdresser. I had been a stay at home Mom, but went to work full time about a month after starting Xeloda the second time. I was able to work the whole time that I was on it, teaching toddlers, including changing diapers without a problem.
    Unfortunately the cancer has now spread to my lung and I have just started Folfox 6. Being on Xeloda was easy compared to this. I just took the pills wherever I went and didn't have to be hooked up to anything.
    Every one is different and reacts differently to medication. I hope that your friend has an easy time with it.
    Jamie
  • markatger
    markatger Member Posts: 314
    #5
    Hi ....

    I had 6-7 weeks of 5 FU and radiation this past summer. My two only problems were hand/foot syndrome the last couple weeks, which went away with a month after being off of the 5FU. The other problem was pain with bowel movements. It also wasn't very bad until the last couple weeks and it also got much better gradually over the month after finishing treatment.

    To deal with the anal pain, I did a couple things :

    Prescription for Lidocaine - applied outside and inside anal canal before having a bowel movement when it got painful. Lidocaine numbs things.

    Prscription for Vicodin - Took this occasionaly when anal pain persisted after having a bowel movement.

    Proctofoam - foam that you apply to anal canal. Helps with immflamation if that becomes a problem

    Aloe Vera wipes and 99% Aloe Vera gel - I bought these both a natural food store in my area. They both have no added chemicals in them. The Aloe Vera is clear (not green -from added dye). The moist wipes are baby wipes that are easier on the sore bum than using regular dry toilet paper. And applying Aloe Vera outside the anus is very soothing and healing.

    Best wishes to you friend. I really did think the experience was not that bad. And it nuked my rectal tumor - which was pretty big and had broken through the rectal wall. When they took out my rectum, what was remaining was mainly scar tissue. I think rectal caner is much more likely to recurr locally - so they really encourage the radiation.

    Maria
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #6
    Hi,

    Your friend has every reason to be scared. This is a very frightening time for him. How old is he? I was 46 when diagnosed with rectal cancer. I had 5 weeks of preop radiation and continuous chemo via a fanny pack that I wore. I worked full time and drove myself to radiation everyday for my 3 o'clock appt. Was it easy, no, but I did it, and he will too. I did not lose my hair. I was very tired and did take 2 days off from work. One was pre planned because my daughter was graduating from college. All I did was work though, my family helped more around the house, we did alot of takeout food and I even had groceries delivered to my house. I wanted the best shot a getting rid of my cancer. It took along time for me to feel better, because of surgery, more chemo, more surgery etc. But it has been 2 1/2 years since my stage 3 cancer diagnosis and I am back to normal except for my ostomy.

    Would I have picked any of this? Absolutely not, but I wasn't given a choice. I am grateful that I remain cancer free and I know that it still could come back.

    My heart goes out to everyone that the cancer has returned. I pray daily for them.

    I had a great support system at home and at work.

    Tell your friend he will get through this.

    Maureen
  • debcanmcg
    debcanmcg Member Posts: 32
    #7
    How odd! My husband age 51 has rectal cancer (diag 5/2004) stage IV meds to liver,lungs and bone. He to is a musician, bass player and star vocals. He has not been able to play with his band since May 2004 and is truely depressed. He was told it was treatable not cureable. But he has not had the hand/foot syndrome. He has an ostomy, and has problems with it. He is tired all the time and could not last one hour on stage. He has treatment every two weeks when his levels permit. His cea level last week was up to 167 one month ago it was 134 the lowest it has been was 12 last nov2004. AS far as the impotent I can relate but have him here is all I need now. Has not lost any hair. I hope your friend does ok. MY husband is a great singer and I hurt knowing he want to preform again. good luck debcanmcg

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