New Stage IV Needs Chemo Advice

pup
pup Member Posts: 8
edited March 2014 in Colorectal Cancer #1
Hello and help! My 47-yr brother, Dave, was diagnosed with colon cancer and had surgery on 4/22 with resection; 2 of 13 nodes involved. Back to the hospital 2 wks later with vomiting and gut pain, determined cause was bowel blockage, no surgery-- n/g tube and meds used. More tests revealed 2 spots on the liver. On 5/27 he had emergency surgery (same symptoms) for what we thought was a "blockage". It was another mass in another part of the colon, and a 2nd resection was done in that area. We were then told that he had multiple adhesions on the liver and that the peritoneal cavity contained several small tumors. A few days later he threw 2 pulmonary embolisms and spent 5 days in ICU. 5-FU/oxal/leuk began on 6/9 and Dave was finally discharged today. Any Stage IV's out there who can help me with what to expect from treatments much appreciated. Anyone on Avistan? They may try it in 30 days.

Comments

  • RMGill
    RMGill Member Posts: 20
    #2
    I was diagnosed 2 months ago with stage IV and am on chemo w/ avastin (first patient at my clinic to recieve avastin). The other chemo agents are 5FCU w/ leucovorin and campostar. many others here are recieving oxaliplatin instead of the campostar, not sure what all the trade offs are. My oncologist wants to stay with the campostar for now, my CEA levels have dropped dramatically so he thinks its working.

    Very sorry to hear about your brother's situation, but you've come to the right place. The group here gave me some much appreciated encouragement when I was first diagnosed. I haven't had surgery yet, there are multiple mets on my liver and it currently can't be rescepted. So, no experience with the suregery side effects.

    Chemo affects everyone differently from what I've gatherred from the conversations on this board. Despite the very aggressive treatment, I've personally had minimal side effects. Only one round of diarrhea, and a little nausea one time, but the Zofran quickly took care of that though. No hair thinning yet. Some mouth sores, want to really watch the dental hygene and get away from any alcohol based mouthwash. Definately very fatigued the day after and sleeping more than normal. I've reduced my work schedule to part time so I can just take it easy and nap the day after treatment. Otherwise, doing well, on my week off I actually felt the best in over 6 months, guesss the cancer was really dragging me down despite the lack of overt symptoms.

    best wishes for your brothers recovery, I will add you to my prayers.

    Rick
  • susie13
    susie13 Member Posts: 1
    #3
    God Bless you for trying to help your brother and God Bless your brother. I am 33 years old and have many of the same problems. I also am a stage4 but I am fighting like crazy to stay alive. I have a 9 year old girl to finish raising. Have you ever talked to a Cancer Treatment Center of America they say they can really help you. I am still doing chemo even though it half kills you it seems to be working. You all hang in there have your brother annointed by the church the Lord will hear your prayers and remember it is His will whatever happens.
  • scouty
    scouty Member Posts: 1,965 Member
    #4
    Hi Pup and Welcome!!!

    I too have a brother, Dave but he is 52 and I am the little sister with stage iv colorectal cancer. I am also on the folfox 6 (oxal, 5fu, and leuco). I am also on avastin but was not given that until my 2nd treatment so my port-a-cath incision could heal up. Avastin impedes blood coagulation so they are careful about using it when wounds are healing (hence the month wait). I started chemo 4/8 and just finished my 5th treatment (every other week). My chemo treatment day last around 4 1/2 hrs now. an hour to an hour and a half for blood testing and anti-nausea pills to take effect. Oxal and Leuco are given together for 2 hours. Then a few minutes of a syringe "push" of 5FU. They then do my avastin (2 hrs the 1st time, 1 1/2 hrs the 2nd, 1 hr the 3rd and now 1/2 hr every time). Once the avastin finishes, they hook up a pump with a tube to my port and start the 46 hr. drip of more 5FU. I go home with the pump,etc in a fanny pack. A nurse comes 46 hours later and unhooks me. My side effects have been fairly minor so far. Minimal nausea, but I make myself eat 5-6 times a day the day before and the days following chemo. Some constipation and diarrhea I am guessing, but I had a tempy colostomy done last fall when my colon perforated (my old dr missed the rectal tumor then..BUMMER, but not much I can do about it now). No hair loss at all, it doesn't seem to be growing as fast, but that just saves $$$ in hair cuts. Fatigue is real. I find I can do more when I do more. I force myself to wander around and play in my yard (one of my loves) and to play with my cat and dog. Exercising really helps the fatigue, believe it or not. Chemo brain is another pain to me. Especially right after chemo, the ole brain just ain't like it usually is. I forget things easier and and have to reread things to really remember them. That does get better over time but the first few days can be frustrating. I am sleeping more then I have ever have (as an adult), 10 hours a nite on average. I am still working full time but am getting ready to go on part time days so I can concentrate more on ME!!!! Humor and a positive attitude are key ingredients in fighting the good fight against the **** beast. Dave will have down days, but they do pass and are normal I think. I find my "down days" to be the day I am unhooked by the home nurse (the 2nd day of the 5FU 46 hr drip). It is always my worst day of the 2 weeks, but passes quickly since I sleep alot that day. Exercise (even just walking around) and eating absorbing foods (oatmeal, breads, crackers, etc) seems to help with the bad day too.

    The only other side effects are infrequent headaches (I stare at a computer for a living) and I seem to becoming lactose intolerent lately. I have switched to organic lactose free milk this week. Milk products started causing nausea. This side effect diminishes over time too.

    I have written a lot but hope it helps you and "Brother Dave"!!!! Let me know if you have any other questions and you both are in my prayers and positive thoughts daily!!!!

    Lisa P.
  • mikew42
    mikew42 Member Posts: 114 Member
    #5
    I was diagnosed stage 4 in February when I had my resection of the colon. They found two spots on the liver (one was removed during surgery for biopsy). Started chemo in late March with Avastin added to treatment. I was the first patient in his office to get the Avastin. Good news is that after two months of treatment, the tumor has shrunk 50% and the onc expects it to be gone by next MRI in July. The other good news is that I relly haven't had any side effects from the chemo. At first a little more tired than usual, a slight naseua the day of treament, but other than that feeling great and working full time (even coaching little league). I am 42 years old, so close to your brothers age. My prayers are with you and your brother. Mike
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #6
    scouty said:

    Hi Pup and Welcome!!!

    I too have a brother, Dave but he is 52 and I am the little sister with stage iv colorectal cancer. I am also on the folfox 6 (oxal, 5fu, and leuco). I am also on avastin but was not given that until my 2nd treatment so my port-a-cath incision could heal up. Avastin impedes blood coagulation so they are careful about using it when wounds are healing (hence the month wait). I started chemo 4/8 and just finished my 5th treatment (every other week). My chemo treatment day last around 4 1/2 hrs now. an hour to an hour and a half for blood testing and anti-nausea pills to take effect. Oxal and Leuco are given together for 2 hours. Then a few minutes of a syringe "push" of 5FU. They then do my avastin (2 hrs the 1st time, 1 1/2 hrs the 2nd, 1 hr the 3rd and now 1/2 hr every time). Once the avastin finishes, they hook up a pump with a tube to my port and start the 46 hr. drip of more 5FU. I go home with the pump,etc in a fanny pack. A nurse comes 46 hours later and unhooks me. My side effects have been fairly minor so far. Minimal nausea, but I make myself eat 5-6 times a day the day before and the days following chemo. Some constipation and diarrhea I am guessing, but I had a tempy colostomy done last fall when my colon perforated (my old dr missed the rectal tumor then..BUMMER, but not much I can do about it now). No hair loss at all, it doesn't seem to be growing as fast, but that just saves $$$ in hair cuts. Fatigue is real. I find I can do more when I do more. I force myself to wander around and play in my yard (one of my loves) and to play with my cat and dog. Exercising really helps the fatigue, believe it or not. Chemo brain is another pain to me. Especially right after chemo, the ole brain just ain't like it usually is. I forget things easier and and have to reread things to really remember them. That does get better over time but the first few days can be frustrating. I am sleeping more then I have ever have (as an adult), 10 hours a nite on average. I am still working full time but am getting ready to go on part time days so I can concentrate more on ME!!!! Humor and a positive attitude are key ingredients in fighting the good fight against the **** beast. Dave will have down days, but they do pass and are normal I think. I find my "down days" to be the day I am unhooked by the home nurse (the 2nd day of the 5FU 46 hr drip). It is always my worst day of the 2 weeks, but passes quickly since I sleep alot that day. Exercise (even just walking around) and eating absorbing foods (oatmeal, breads, crackers, etc) seems to help with the bad day too.

    The only other side effects are infrequent headaches (I stare at a computer for a living) and I seem to becoming lactose intolerent lately. I have switched to organic lactose free milk this week. Milk products started causing nausea. This side effect diminishes over time too.

    I have written a lot but hope it helps you and "Brother Dave"!!!! Let me know if you have any other questions and you both are in my prayers and positive thoughts daily!!!!

    Lisa P.

    Hi Pup and Dave--I am a survivor here to tell you that there are some wonderfull people here to guide and help support you.You are obviously very concerned for Dave and I really think that in some ways relatives and carers have a very heavy load to bare.
    Chemo is a very discriminatory treatment--its side effects vary greatly from one cancer patient to the next.Unfortunately there is no true sequence nor reliable indicator as to how a patient will react to the treatment--we all react differently.
    Having said that it is most important that Dave tells his clinic nurses ANY unusual side-effects no matter how trivial they may seem.There is absolutely no reason to put up with any effects--most--if not all can be treated, but he must make them aware of them.
    As you will read in these posts--there are many varying forms of colon cancer and each case has its differences.That is one reason why such a diverse group can offer so much advice.
    Our very best to you as a carer and to Dave.
    Our thoughts are with you--luv kanga n Jen "down under"
  • Fitlisa
    Fitlisa Member Posts: 99
    #7
    Hi Pup and Dave,

    I am not Stage IV but Stage III but my chemo is the same as Dave's. A bit of background: I was diagnosed May 11, 2004 with no family history or symptoms (Im 42 and previously very healthy). I had surgery 6 days later (removal of 2 feet of bowel). No mets to other organs but 14 of 32 nodes positive. I started chemo exactly 2 weeks after surgery (I dont recommend that now btw). My side effects were pretty nasty nausea and fatigue (I think because of the nausea). I was queasy starting the morning after my first treatment and this continued for the next 9 days constantly - queasy and vomiting after eating anything. My onc tried Ativan, Compezine and Phenergan and nothing worked. I am told tho that this level of nausea is very rare and that its likely because we started my chemo so quickly after surgery. This cycle, which starts tomorrow, I am armed with Zofran, Marinol and Emend = something has to work for sure.

    I too have the pump which is disconnected by the nurse at my home on Friday afternoon.

    As others have said,chemo side effects seem to effect everyone differently and some not at all. What I try to remember is that this is temporary - there is an end to the chemo and we just need to stay focused and positive and time will pass and before we know it, its over.

    Best of luck to you both,

    Lisa
  • jana11
    jana11 Member Posts: 705
    #8
    Hi pup. I am so very sorry to hear about Dave - sounds like a rough start to a rough disease. I was treated for Stage 3, but now have a lung met that was removed. I am starting Xeloda/oxal tomorrow. My onc told me oxal has less chance of hair loss than CPT-11. I took CPT-11 and Xeloda that first time around.

    My worse side effects were fatigue and diarrhea. The diarrhea was controlled with Immodium (lots of it). The fatigue was partly due to the anemia I had. My WBC's never dropped to dangerous levels, but my blood did. They gave me epogen shots (stimulates body to make more RBC's). Despite the "fatigue" I'm telling you about - I still worked full time. My work was wonderful letting me come in late or leave early when necessary. So I had it pretty good.

    My onc. told me one of the possible side effects of Avastin in blood issues. It can cause increase bleeding or increase clots. I am aware of this because this December I got a clot in my brain and had a small stroke (but no deficits, thank god). For this reason we aren't overly eager to start me on avastin unless totally necessary. Because your brother had the PE's - the doctors may be careful with your brother's history... however, Dave may need it.

    It is all a little over my head - the details of treatment selection. I handled my first line of chemo pretty well. I plan to continue to work through the next round if I can.

    Both you and Dave will remain in my thoughts. Hang in there, and allow yourself to break down as needed... it helps.
    jana

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