Bad News....any suggestions?

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sasjourney
sasjourney Member Posts: 395 Member
edited March 2014 in Colorectal Cancer #1
Hi all,

I got bad news from the oncologist today and need some help determining what I should do next as far as treatment is concerned. In a nutshell--I was diagnosed stage IV in March of this year after severe abdominal pain. I had surgery to resect colon, complete hysterectomy (cancer had spread to ovaries), liver resection (2 small spots) and 5 lymph nodes positive for cancer. I completed 11 rounds of Folfox w/Avastin (8 rounds of avastin because of high blood pressure). All scans (many PET and CT's) showed NED since surgery and CEA has remained normal. Chemo completed in September and I chose to take a break since I was NED and needed time to recover from chemo. The last 3 months I have felt great. A few weeks ago I felt some enlarged lymph nodes in groin. CT and biopsy show cancer in the lymph nodes. Liver and all other organs look fine.

My onc. recommends 5-fu/leucovorin and avastin or xeloda and avastin. I do not have to have oxyplatin again. He feels that I can wait until January to start my treatment. Does anyone have any opinions or advice to offer about xeloda? I don't know which treatment would be better since they both have bad side effects. I am going for a second opinion with Dr. Lenz and possibly a third opinion at MD Anderson. I am trying to focus on the positive, but it is difficult right now. The fight continues...

Hugs,

Sara

Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    The same as I have.
    And we did 5 rounds of folfiri with avastin which brought nodes to normal size and no pet activity! then 25 rounds of radio in the nodes, they think is going to be enough to smash the cancer in lymph nodes ( retroperitoneal).
    Hope it helped !
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Sara
    So sorry that the darn cancer has shown back up. Really sux to put it mildly. Since I don't yet have experience with the chemo for the next step, I can't really make any suggestions but, I do want you to know that I am here wishing you the very very best. HUGS
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Sorry Sara
    Sara, I am so sorry you have this to deal with; sorry I have no experience with xeloda. I am on folfiri + avastin. Best wishes. Fight on!
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Sara
    Sara,

    I am so sorry that you got news like this. I am sure it was difficult to process, especially since you have been feeling so well. After my liver resection I started up Folfox again and managed 1 more complete treatment before I had my allergic reaction. I asked my doctor about doing Irinotecan and she said no, that we would use 5FU for adjuvant treatment. I asked her why not and her respnse was that irinotecan was especially effective for lymph node mets. Is your doctor suggesting 5fu only as a way to reserve irinotecan for the future? Your second opinion with Dr Lenz is crucial and will hopefully impart good suggestions as to your direction.

    Sara, I keep you in my prayers. I do want to tell you that a good friend of ours had lymph node mets and chemo alone put him into remission where he has remained for 6 1/2 years. April marks his 7 year of NED.

    Hugs to you,
    Amy
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Sara
    Sorry, double post. Darn iPhone!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Xeloda or 5FU?
    Hi Sara

    This depends on what your body will tolerate...some folks handle one or the other better than others, as you know we all react so differently, it seems.

    I'm not sure what program you would be put on for the 5fu with Avastin. I mean would it be the 46 hour pump? And if so, weekly or twice a month?

    Or would it for like 6-weeks, 24/7?

    5fu pump gives me stomach issues, but Xeloda did as well too. After 6-weeks of the pump my feet begin to blister and hurt.

    When I did Xeloda, it was hard on my stomach and burned, split, and cracked my feet wide open - so bad it was hard to stand or put shoes on.

    We tried several different cycles...started out on 4000 mg a day for 2 weeks on 1 week off. After the toxicitiy built up so much in me, we lowered to 3000 mgs a day, but 1 week on and 1 week off - I tolerated it better and it even saved me a script and money doing it that way.

    I also did the Avastin with the Xeloda...I've read where Avastin can cause heart issues and my heart skips a beat pretty regularly now and it was after I'd been on the Avastin for about 8 months, that I noticed it.

    That's how it went for me - and perhaps this can give you an idea as you try and make your decision.

    Like life, it's 6-one way and 6-the other.

    -Craig
  • lizzydavis
    lizzydavis Member Posts: 893
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    Sundanceh said:

    Xeloda or 5FU?
    Hi Sara

    This depends on what your body will tolerate...some folks handle one or the other better than others, as you know we all react so differently, it seems.

    I'm not sure what program you would be put on for the 5fu with Avastin. I mean would it be the 46 hour pump? And if so, weekly or twice a month?

    Or would it for like 6-weeks, 24/7?

    5fu pump gives me stomach issues, but Xeloda did as well too. After 6-weeks of the pump my feet begin to blister and hurt.

    When I did Xeloda, it was hard on my stomach and burned, split, and cracked my feet wide open - so bad it was hard to stand or put shoes on.

    We tried several different cycles...started out on 4000 mg a day for 2 weeks on 1 week off. After the toxicitiy built up so much in me, we lowered to 3000 mgs a day, but 1 week on and 1 week off - I tolerated it better and it even saved me a script and money doing it that way.

    I also did the Avastin with the Xeloda...I've read where Avastin can cause heart issues and my heart skips a beat pretty regularly now and it was after I'd been on the Avastin for about 8 months, that I noticed it.

    That's how it went for me - and perhaps this can give you an idea as you try and make your decision.

    Like life, it's 6-one way and 6-the other.

    -Craig

    Hi Sara,
    I had Folfox and Xeloda after the Folfox. Both were tough for me but I am glad I had them. The biggest problem with Xeloda was the hand/foot syndrome but I kept the chant going that "I can do this" and "It will be over before I know it".

    I have copied some older posts from other members below for you to read.

    Here they are:

    Xeloda is much easier than Folfox. I had both. Xeloda can cause hand/foot syndrome. My hands and feet peeled and got red and sore. Eucerin cream, Udder cream or vaseline, antibiotic cream, etc are a must use every morning and evening to ease this problem. You can get it all but at the drug store. When you use this cream at night, put white gloves/socks on to keep it on your hands. I did not loose my hair with Xeloda. Drink lots of water to wash it through your system. Some people have stomach problems. With the help of your doctor, any side effects can be managed.
    Hoping all goes well. It will. Just remember...use your energy for going forward.

    I took Xeloda prior to surgery, again with radiation and am back on Xeloda once again. I take 3 500mg pills in the am and 3 in the pm. I have had terrible symptoms with Oxy the other chemo drug but no symptoms whatsoever with Xeloda. There is also no hair loss with Xeloda. I'm not sure how much radiation you need but I had issues with that about 2-3 weeks in! Best wishes.
    The xeloda really bothered my bowels, and caused me to have a lot of stomach pain however, my oncologist always had a medication to relieve the discomfort so IF you have problems dont hesitate to call your Doctor for help. Drink lots of water, I ended up in the hospital for dehydration because I let myself get too sick before I did anything so I will pray that doesnt happen to you. Attitude is everything so just think positive and at the first sign of trouble call your Doctor. No hair loss just thinning a little.

    My husband has been on Xeloda since may ot 2007. The only side effect of the drug for him was hand and foot syndrome. He was taking 4 (500 mg) morning and again at night. The dosage had to be adjusted after the second round because of the hand/foot problem. All the skin blistered then peeled. He had difficulty walking and could not even open a coke bottle. After reducing the dosage, he did much better. He still would experience foot pain when the drug built up in his body. The doc would allow a break before returning to the med. Be sure to use the lotion mentioned by others. My husband used it as well and it seemed to help. Also, when the blisters on the feet peeled and made walking difficult, we would use New Skin a liquid type bandage that could be painted on the affected area like finger nail polish smelled like it too. This allowed walking with much less pain. We only had to do this during the first and most difficult time of side effects. With the help of your doctor, any side effects can be managed. Also, my husband did not experience any hair loss or other side effects. Except for a brief time when the first side effects hit so strongly, he has worked a 40-50 work week. He also did not experience the fatigue and other side effects that some chemo drugs cause.

    I am sending good thoughts and prayers your way.

    Hang in there, Sara.

    Lizzy
  • sasjourney
    sasjourney Member Posts: 395 Member
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    Thanks!
    Thanks for the support and encouragement. I know I have a lot to think about before I make my decision.

    Have a nice weekend.

    Hugs,

    Sara
  • geotina
    geotina Member Posts: 2,111 Member
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    Sara:
    George was on 5-FU/leucovorin, Avastin mix for over a year as a maintenance chemo for his Stage IV, did its job for over a year. George found it more of a nuisance than anything having to go in for the infusion which took about 30/40 minutes and that included the blood draw. George went straight from Folfox to the new mix and didn't complain of any new side effects or new discomforts. Don't know if this helps but thought I would throw it into the conversation. George never had the pill form of 5FU.

    Hang in there - Tina
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
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    Awww
    Sara can't give any advice, but sending you hugs and I will pray for you. And I know everyone will echo this bit I HATE CANCER!!!!

    Sonia