More lung mets - help with Folfiri/Avastin needed

califsue
califsue Member Posts: 80
edited March 2014 in Colorectal Cancer #1
My CT scan results, 2 months post bilateral VATS for lung mets (April 1), was not what I had hoped for. The scan showed a new 3 mm nodule in the right mid-lung (anterior to the major fissure), new R hilar lymph node adenopathy and more prominent subcarinal lymph nodes.

In retrospect, VATS was not successful for me. As my second opinion said, he would have given me chemo when multiple mets to my lungs and lymph nodes showed up on my March scan. I know that everyone is different, but I am posting this because my experience may help someone in a similar situation who is trying to make treatment decisions. I also know that there are stage 4 people who have had successful lung met excisions.

I'm scared about starting chemo again. I'll be starting Folfiri/Avastin on Wednesday. I had a terrible time on Folfox, multiple transfusions, hospitalization, ER visits, etc. I made it through 11 treatments, however.

Do any of you have any tips or suggestions about Folfiri/Avastin? Does it help to extend the infusion time of irinotecan to reduce side effects? the infusion time of Avastin? Are there any over the counter meds that I should have on hand? Any prescription meds that I should ask for? Anything that I can do to reduce hair loss? Any supplements I should take?

Your knowledge is invaluable. I would appreciate any and all comments.

Together in hope,
Susan

Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    #2
    Hi Susan!
    I have Stage 4 Colon Cancer with a tumor in my liver, and my oncologist started me on Folfiri with Avastin, because it was February at the time, and she doesn't like to give oxy in the winters because of the cold sensitivity that comes with it, and she said plus she gets good results with Folfiri.

    She told me I would not lose my hair on this chemo, but I will have hair thinning, which I am experiencing, I will be doing my 6th out of 12 treatments this Wednesday, and clumps of hair is coming out, it's thinning very rapidly, I don't have any bald spots at all, but I can feel how thin my hair is, and each shower I take, I dread to see how much will be coming out of my head, even brushing it, you will see alot of hair coming on that brush, but that's been the least of my worries.

    My first treatment was really bad, the anti-nausea meds they gave me (Zofran and compazine) did squat! I was so sick when I was hooked up, I couldn't eat and drink for 4 days! I was so out of it, they called me to see how I was doing, and I told them I thought I was dying, if the cancer wasn't going to kill me, this chemo will....well, they then said I would never feel like that again, and they were going to switch my meds, which they did.. they added Emend and Dexamethasone, which helped a great deal! so get those for the nausea, it made a world of difference! Now I can clean, go out, cook and all while being on the pump, and feel good, the only thing I feel now is getting tired more faster.

    I go in every other Wednesday, to get infused, Avastin takes about 30 minutes for the bag to be done, and then the irinotecan and 5fu take 2 1/2 hours for those bags, and they send me home on a pump for 46 hours, which a home health nurse unhooks me on Friday, and then you may feel wiped out for a few days, which is ok, you will bounce back to your normal self after a few days, your energy level will come back, and just when you start feeling good again...BOOM! you gotta go back and get more chemo..it becomes routine, and you get used to it.

    Just get those good anti-nausea meds, I also take ativans and xanex for rest, it helps me sleep throughout the night, some anti-depressants, I take zoloft, which helps me have a better outlook on life where I'm not thinking of death all the time, and you should be fine!

    If I can do it, and I'm a wuss when it comes to these things, you can do it! good luck with it! I had my first CT scans last month, and my doctor said the chemo has killed most of my cancer, so after a couple of hospitalizations, including a colostomy, it was good to hear that good news~ she was eager to get me back on it after recuperating from surgery for 5 weeks!

    Hugssss~
    Donna
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #3
    Hi Susan,
    Donna gave you a
    Hi Susan,

    Donna gave you a lot of info already on the Folfiri/Avastin, but here's what I have to add...

    I technically wasn't on Folfiri, because Folfiri includes 5FU along with the irinotecan. I didn't have the 5FU pump, but had Xeloda pills (the oral pill version of 5FU) instead. So I had Xeloda, irinotecan, and Avastin- pretty much the same thing. I really was glad though to not have to deal with the pump for the 5FU- the Xeloda pills were so much easier to deal with. It may even be something to discuss with your onc. A while back, they thought 5FU worked better, but a recent study I've heard of and my onc agreed with this, is that Xeloda is at least equally effective as 5FU/pump and in some cases even slightly more effective. I've heard some people experience more hand/foot syndrome with the Xeloda than they do with the 5FU, but I personally experienced the opposite. I currently still take Xeloda on a maintenance basis. Anyhow, re. extending out the infusion times to reduce side effects, I'm really not sure about that. The only thing I ever had extended out was when I was on oxalyplatin & that was because I had allergic reactions to that. I never had anything extended out with the irinotecan or Avastin though. Donna mentioned taking Emend. Emend was a life saver for me when I was on Folfox. My insurance wouldn't pay for it when I was on the Folfiri, however, for whatever reason so I didn't get it then. I took compazine (in addition, of course, to whatever anti nausea meds they infused into me while I was getting the chemo), which actually did help me most of the time.
    So far as hair loss, I also experienced some thinning, but not as much as it sounds like Donna has been experiencing. When that started, I was convinced I was going to lose it all or get bald spots so I went out and bought a couple of scarves and hats, but never ended up needing them. I don't think anyone else could really even tell that I had lost any hair- just my husband could tell when he looked at it carefully (and my hairdresser, of course!)
    The tingling/sore feeling on the scalp is what preceded the hair thinning. It would mostly come out when I was washing my hair in the shower. Interestingly, it got to a certain point and then stopped, even though I was still continuing to take irinotecan. I've also had a couple of incidents of having a very sore/tender scalp for a few days at a time, and then it would just go away with no hair falling out at all.
    The diarhea was an issue & would usually hit me 2-3 days after chemo and would last 2-3 days. Immodium definitely helped slow it down, but I still did have it. I was just glad that it wasn't constant and every day. I could usually count on it for certain days and then I'd plan my weekly schedule/days out around that.

    Best wishes to you-
    Lisa
  • Shayenne
    Shayenne Member Posts: 2,342
    #4
    lisa42 said:

    Hi Susan,
    Donna gave you a
    Hi Susan,

    Donna gave you a lot of info already on the Folfiri/Avastin, but here's what I have to add...

    I technically wasn't on Folfiri, because Folfiri includes 5FU along with the irinotecan. I didn't have the 5FU pump, but had Xeloda pills (the oral pill version of 5FU) instead. So I had Xeloda, irinotecan, and Avastin- pretty much the same thing. I really was glad though to not have to deal with the pump for the 5FU- the Xeloda pills were so much easier to deal with. It may even be something to discuss with your onc. A while back, they thought 5FU worked better, but a recent study I've heard of and my onc agreed with this, is that Xeloda is at least equally effective as 5FU/pump and in some cases even slightly more effective. I've heard some people experience more hand/foot syndrome with the Xeloda than they do with the 5FU, but I personally experienced the opposite. I currently still take Xeloda on a maintenance basis. Anyhow, re. extending out the infusion times to reduce side effects, I'm really not sure about that. The only thing I ever had extended out was when I was on oxalyplatin & that was because I had allergic reactions to that. I never had anything extended out with the irinotecan or Avastin though. Donna mentioned taking Emend. Emend was a life saver for me when I was on Folfox. My insurance wouldn't pay for it when I was on the Folfiri, however, for whatever reason so I didn't get it then. I took compazine (in addition, of course, to whatever anti nausea meds they infused into me while I was getting the chemo), which actually did help me most of the time.
    So far as hair loss, I also experienced some thinning, but not as much as it sounds like Donna has been experiencing. When that started, I was convinced I was going to lose it all or get bald spots so I went out and bought a couple of scarves and hats, but never ended up needing them. I don't think anyone else could really even tell that I had lost any hair- just my husband could tell when he looked at it carefully (and my hairdresser, of course!)
    The tingling/sore feeling on the scalp is what preceded the hair thinning. It would mostly come out when I was washing my hair in the shower. Interestingly, it got to a certain point and then stopped, even though I was still continuing to take irinotecan. I've also had a couple of incidents of having a very sore/tender scalp for a few days at a time, and then it would just go away with no hair falling out at all.
    The diarhea was an issue & would usually hit me 2-3 days after chemo and would last 2-3 days. Immodium definitely helped slow it down, but I still did have it. I was just glad that it wasn't constant and every day. I could usually count on it for certain days and then I'd plan my weekly schedule/days out around that.

    Best wishes to you-
    Lisa

    OH YEAH!!
    Watch that diarrhea!! I forgot to mention that, I had it horribly the first couple times, but started taking the Immodium-AD the night before chemo started, and took it everyday, I actually been taking it everyday now, even after the chemo since it's helped keeping me so regular, with no watery output at all, I tried to stop taking it once, and the diarrhea came back, so I started taking the Immodium again, it's helped me alot!

    I wish I could take the pills instead of that pump, maybe when they evaluate me after my 12 rounds, they'll do that as part of my maintenance therapy. I never felt any tingling though in my hands, feet or scalp, but I'm hoping I don't lose anymore of my hair, I have ALOT of hair, it used to be so nice and thick, but not anymore, I Just hope it stops coming out by the last treatment though.

    Hugssss!
    ~Donna
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    #5
    Hi Susan,
    Sorry you have to
    Hi Susan,

    Sorry you have to go through this. I just finished up 8 rounds of folfiri w/avastin and thought it was MUCH, MUCH, (sorry for shouting) easier than folfox. The trick for me was to take Ativan which helped extremly with the nausea. I still would lose me lunch but not have the yuckies before and after.

    The meds during chemo (zofran) helped with the runs. In fact, the biggest problem I had was medicating to stop the runs plugged me up big time. So feel it out for your self. Serious constipation was way worse than the diahrea. I think eating Activa yogurt and pro-biotics helped a bunch.

    Hope this helps!

    Jennifer
  • ADKer
    ADKer Member Posts: 147
    #6
    jenhopesprays said:

    Hi Susan,
    Sorry you have to
    Hi Susan,

    Sorry you have to go through this. I just finished up 8 rounds of folfiri w/avastin and thought it was MUCH, MUCH, (sorry for shouting) easier than folfox. The trick for me was to take Ativan which helped extremly with the nausea. I still would lose me lunch but not have the yuckies before and after.

    The meds during chemo (zofran) helped with the runs. In fact, the biggest problem I had was medicating to stop the runs plugged me up big time. So feel it out for your self. Serious constipation was way worse than the diahrea. I think eating Activa yogurt and pro-biotics helped a bunch.

    Hope this helps!

    Jennifer

    Everyone reacts differently to the chemo
    Susan - I have not had either Avastin or 5-FU so I cannot comment on those. I did 6 months of irinotecan and oxaliplatin last year with minimal side effects. My hair thinned but it was noticeable only to me and my immediate family. I also received a form of 5FU through an HAI pump directly to my liver, which is why I did not do 5FU systemically. After a liver resection, I did Xeloda, which did not work for me and I had a recurrence in my liver. I have returned to the irinotecan and HAI pump chemo, which are again helping me. This time I am receiving a higher dose of irinotecan and have had significant, noticeable hair loss. Other side effects, particularly with the irinotecan, have been minimal. I have done 7 cycles and developed diarrhea in only 3 of the cycles. For me, 2 Imodium as soon as it starts puts an end to the diarrhea. Otherwise, I feel great. I know that there is a whole range of the strength of the side effects that people experience but I am definite proof that it can be quite mild. I do believe that the systemic 5FU does drain most everyone to some extent, but, again, that is second hand info from me. I believe that there is a test that can be done to determine whether or not you are likely to respond to the Xeloda. I will try to find more info about the test. Based my experience with Xeloda, I would want to see you tested before relying on it. I believe that Xeloda is easier to tolerate than systemic 5FU, but there is no point in wasting time on the Xeloda unless there is a good possibility that it will help you.
  • califsue
    califsue Member Posts: 80
    #7
    ADKer said:

    Everyone reacts differently to the chemo
    Susan - I have not had either Avastin or 5-FU so I cannot comment on those. I did 6 months of irinotecan and oxaliplatin last year with minimal side effects. My hair thinned but it was noticeable only to me and my immediate family. I also received a form of 5FU through an HAI pump directly to my liver, which is why I did not do 5FU systemically. After a liver resection, I did Xeloda, which did not work for me and I had a recurrence in my liver. I have returned to the irinotecan and HAI pump chemo, which are again helping me. This time I am receiving a higher dose of irinotecan and have had significant, noticeable hair loss. Other side effects, particularly with the irinotecan, have been minimal. I have done 7 cycles and developed diarrhea in only 3 of the cycles. For me, 2 Imodium as soon as it starts puts an end to the diarrhea. Otherwise, I feel great. I know that there is a whole range of the strength of the side effects that people experience but I am definite proof that it can be quite mild. I do believe that the systemic 5FU does drain most everyone to some extent, but, again, that is second hand info from me. I believe that there is a test that can be done to determine whether or not you are likely to respond to the Xeloda. I will try to find more info about the test. Based my experience with Xeloda, I would want to see you tested before relying on it. I believe that Xeloda is easier to tolerate than systemic 5FU, but there is no point in wasting time on the Xeloda unless there is a good possibility that it will help you.

    Thanks everyone - Take off is at 0130 today
    Thank you all for your responses and words of encouragement. You have helped me mentally to take on this chemo regimen as a fight for my life. Because that is just what it is. Chemo is my weapon of choice and I am choosing to do this. This kind of attitude is so much more empowering than victim (which I keep falling back into). I need fellow warriors like you to keep giving me attitude adjustments.

    I'll have some immodium and ativan on hand to handle any nasty side effects that might rear their heads. I have a bottle of baby shampoo on hand as well. I may spring for the Nioxin, but we'll see. I will take my chemo kit to the infusion room - a super soft feel good throw given to me by my girlfriend, some good tunes, relaxation tapes, books, magazines and some flowers for my favorite infusion nurse. I've been corresponding with her since my Folfox days over a year ago.

    So, I'm going into this with the attitude that, "I CAN DO THIS" and I hope beyond hope that it works for me. If Folfiri/Avastin doesn't work for me, my second opinion said that since I've failed all other "standard of care regimens", my only other option will be a clinical trial.
    I'll know in two months when I get another CT scan to monitor the chemo.

    Together in hope,
    Susan

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