First Folfox treatment yesterday, felt OK going into, nurses' info depressing

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I had my first Folfox treatment yesterday, am at home with the rest of the treatment that runs for 2 days. Going into chemo after my first visit with my oncologist and his nurse, I felt fairly good about what I was facing. (51 years-old, laparoscopic sigmoid resection with 1 of 21 nodes positive). Being in otherwise fairly perfect heath, I am very aware I could be much worse off and am grateful for that. When I saw the oncologist and his nurse, he went over side effects and mentioned my hair would just thin, not completely fall out, there would be some cold intolerance and neuropathy, nausea was controllable.  As I have the opportunity to go with my husband and siblings/spouses in January to Las Vegas I asked the doctor if I could travel, and he said no problem.  Had he said "but you won't have any hair/lashes/eyebrows" I wouldn't have dreamed of going on vacation and would have gone next year.  

When I had my first chemo yesterday, one of the first things the chemo nurse said was "you can stop treatment at any time". This confused me, did it mean it was so bad that is what usually happens and people stop treatment? The second thing she said was "you know you'll lose your hair?" I told her the oncologist and his nurse did not indicate I would lose my hair, only possible thinning. She went on to indicate where I could purchase wigs and I might want to cut my hair very short.  I told her I'd play that by ear for now.

Long/short version, I'm now really down in the dumps. I don't want to book for Las Vegas now and had been so looking forward to it. I planned to work my desk job as much as possible during treatment, but now will probably consider a leave of absence. Does anyone have any words of advice here? I see the oncologist on Nov. 9 and will definitely mention everything to him.

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  • John23
    John23 Member Posts: 2,122 Member
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    It's never too late.......

    For a second opinion.

    Only one node, and the tumor taken out? Often no further treatment is suggested.... Oncologists push chemicals and radiation, colorectal surgeons are a bit more objective. It would be in your best interests to get a second opinion.

    Hoping for your better health,

    John

     

  • lizard44
    lizard44 Member Posts: 409 Member
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    Everyone reacts differently to treatment

    Some chemo  will cause hair loss in some peope, some won't. When I  was on Folfox plus Avastin my hair thinned but not noticeably so. It wasn't until I began  a regimen of Irinotecan and Erbitux that I began to lose a lot of hair, at which point I did get it almost all shaved off. My main problem with  the Folfox was fatigue-  it hit quite hard once the 5-FU pump came off after 46 hours and lasted for a couple of days. After that I felt pretty good thoughout the treatment.

    If you're wondering whether to continue the chemo treatments I'd ask your oncologist what he hopes the  chemo  will accomplish and why he thinks it is necessary. It's probably  just mop-up chemo to make sure there aren't any renegade cancer cells lurking after the surgery. If you don't like what you hear, you can always ask for a second opinion.

    Best of luck with your treatment- I hope you do get to the enjoy the trip you've planned.

    Grace/lizard44

     

  • abrub
    abrub Member Posts: 2,174 Member
    edited October 2016 #4
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    I didn't lose my hair on Folfox

    I lost body hair, but the hair on my head remained thick.  It did become straight, which is unheard of in our family.  You may want to ask about skipping a week of chemo before your trip, just to ensure you are feeling better, but with this chemo, tho many don't complete all scheduled cycles, many others do.  Some people have minimal side effects from this treatment; others more major.  Keep track of everything, and let your dr and nurses know.  It's a very effective chemo.

  • Colleen E.
    Colleen E. Member Posts: 8
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    Thanks for the Replies - feeling a bit better

    Thanks for the replies. My chemo was suggested as a precaution, based on my current health status and age group. If there was zero lymph node involvement I would have been able to forgo the chemo. I would not be able to live with the possibility of spread hanging over my head for the rest of my life so am in agreement with my oncologist (I am in Canada so my treatment is covered by our provincial health). I guess I'll just re-ask and not obsess about my hair and try to keep positive as many have not had hair loss. I will wait to plan our trip after I se the doctor in 2 weeks, and discuss adjusting the treatment based on the date of travel. Again thank you all - so nice to have the input of those who have been where I am.

     

    Colleen.

  • Bellen
    Bellen Member Posts: 281 Member
    edited October 2016 #6
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    Hair loss

    My chemo is folfuri - I have had two reduced trestments (20 then 30% due to low WBC).  My hair is quite thin and long - I believe it will be gone soon, as I am getting a lot of hair loss.  Handfuls when I wash my hair - I went out way before my treatment started and bought a wig that is a bit similar to my hair, and a halo wig (no topper) that is my hair length (had it cut where I bought it) that I can wear with hats. The halo wig was around $70 in Canada - you can see them on line.  Crappy that we have to go through this hair loss - and I really don't think you know because some have not had hair loss, and others have.  Good luck with your treatment and hope you can still enjoy your trip.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited October 2016 #7
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    If you lose you hair

    you can choose your reaction. Own it or hide. 

    Go to Vegas. Rock it!  

    I have noticed that we don't go bald, like breast Cancer patients. I call it shiny bald. But it CAN thin so much you will look like Gollum (Lord of the Rings). When I looked like Gollum, I shaved my head. Not bald but down to the nubs. 

    I decided I would rock the look, so didn't bother with wigs, and only wore a hat when I was exposed to the sun. 

    IF - and it might not happen - you lose you hair, don't hide. Life is too short. I bet you will be adorable. 

    And yes,ntreatment can get bad, real bad; and it can be a breeze. You won't know until your a few weeks into it.

    good luck!

    SUE

     

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    edited October 2016 #8
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    As others have said reactions vary.  As you get further into treatments you may find they increase.  I like Abrub's idea of asking for a break before your trip.  It can be done.  Also stay ahead of any reactions by mentioning EVERYTHING to your onc team...playing catch-up when anything gets too bad, is hard to manage.

    That said, if it were me I would go ahead and plan that trip, sounds like a great time.

    When my sister had chemo for uterine cancer, her hair thinned so much that she just had her head shaved.  She tried a very nice wig, but she said it made her head too hot.  Instead we got her a great ball cap with hair attached.  She loved it.   

    I hope you find that you do well with treatments and enjoy what sounds like a great trip with the family.

    Marie who loves kitties

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited October 2016 #9
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    I was on folfox for a couple

    I was on folfox for a couple of months and didn't lose my hair. I didn't finish my treatments. I missed the last two. I was going to stop them but ended up in the hospital with a blood clot so it was stopped automatically. The reason I was going to stop them is because I was never confident in doing the mop up chemo, particularly after I had a long wait to start on it after my surgery due to a complication and the reduced success of it helping in that situation, and then the neuropathy becoming too much to deal with. My hair did eventually fall out but it was 5 or 6 months after the blood clot and spending 4 months in the hospital from that and I've been told it was from that, the long hospital stay and all the drugs I'd been given, not the chemo. Only about half of it fell out, at the back but I had the Gollum look where it did fall out. I had it cut and have finally grown it back to the length it was and I wish I'd just used a hairpiece at the back for a few months instead of cutting it. My hair is now thicker and curlier than ever. I don't like it.

    If it had all fallen out or enough to make me shave it I'd have got myself a cool wig. The good news is that I get only about 5 leg hairs now and don't have to shave under my arms as often. The downside is that my eyebrows, which didn't totally fall out, grew back in messy looking. I now have to draw in the bare areas and trim off the hairs that go in all directions.

    If I were you I'd buy a ticket and plan to go no matter what the situation was with my hair. I suspect most people don't lose their hair, just some do. I was never told that I would when I went on it and I didn't. 

    Jan

  • Colleen E.
    Colleen E. Member Posts: 8
    edited October 2016 #10
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    JanJan63 said:

    I was on folfox for a couple

    I was on folfox for a couple of months and didn't lose my hair. I didn't finish my treatments. I missed the last two. I was going to stop them but ended up in the hospital with a blood clot so it was stopped automatically. The reason I was going to stop them is because I was never confident in doing the mop up chemo, particularly after I had a long wait to start on it after my surgery due to a complication and the reduced success of it helping in that situation, and then the neuropathy becoming too much to deal with. My hair did eventually fall out but it was 5 or 6 months after the blood clot and spending 4 months in the hospital from that and I've been told it was from that, the long hospital stay and all the drugs I'd been given, not the chemo. Only about half of it fell out, at the back but I had the Gollum look where it did fall out. I had it cut and have finally grown it back to the length it was and I wish I'd just used a hairpiece at the back for a few months instead of cutting it. My hair is now thicker and curlier than ever. I don't like it.

    If it had all fallen out or enough to make me shave it I'd have got myself a cool wig. The good news is that I get only about 5 leg hairs now and don't have to shave under my arms as often. The downside is that my eyebrows, which didn't totally fall out, grew back in messy looking. I now have to draw in the bare areas and trim off the hairs that go in all directions.

    If I were you I'd buy a ticket and plan to go no matter what the situation was with my hair. I suspect most people don't lose their hair, just some do. I was never told that I would when I went on it and I didn't. 

    Jan

    Thanks Jan

    Thanks for that - I seem to be much the same as you assuming my chemo is "mop up". The hair info is good to know - I will just play it for ear for now. We will order our tickets for Vegas but will probably purchase cancellation insurance as a precaution. P.S. beautiful horse!!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited October 2016 #11
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    Thanks Jan

    Thanks for that - I seem to be much the same as you assuming my chemo is "mop up". The hair info is good to know - I will just play it for ear for now. We will order our tickets for Vegas but will probably purchase cancellation insurance as a precaution. P.S. beautiful horse!!

    Thanks! I just changed my

    Thanks! I just changed my picture so he's not in it now. I still have him, I just rode him the other day, but the picture was old and I wanted one that reflected how I'm doing right now. I look healthy and I feel pretty good. Anyway, my hair took a few weeks to fall out. It was several washings and it came out in fairly large amounts each time but it took a few weeks for it to become noticable. And I actually thought it was okay and then saw a picture of myself from behind and realized how bad it looked to have the long straggly parts hanging down so I got it cut to shoulder length and nobody knew.

    Of course, that was my experience, my hair on top never fell out so it covered the area that was very thin. Once I got the long part cut off it looked fine. But I like having long hair. I'm 53 and not interested in having short hair until I'm older. And I work in a dental office so it's nice to be able to put it up in a bun or ponytail or whatever. And, mine didn't fall out from chemo so it might be completely different from losing it to chemo.

    Anyways, I hope yours stays and you have a wonderful time in Vegas! Last time we got a bus pass and it was much cheaper than the cabs we used to take everywhere. If you do lose it I bet you can get an awesome wig down there! 

    Jan

  • Bellen
    Bellen Member Posts: 281 Member
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    Hair loss

    Hi group - Forgot that my treatment is folfuri + avastin, so not sure what is causing so much hair loss.  Washed it today and I'm surprised I have any left - had 1st 20% reduced chemo Sept 30, then 2nd 30% reduced.  Today I went out and brought a hat with me, as I was worried my hair might just fall out in clumps.  It fills my comb.  Chemo is sure "working" on the hair loss.  I wonder if I should just get my hair cut shorter, or buzzed - would like to keep some for as long as can, but it sure seems like it will be no time before it is all gone.  I just feel I would like to look as similar to what I looked pre treatment as possible.  I do not want to get into my health with "casual" friends when I am out - it gets me all upset. I think we should handle hair loss as to how we each feel individually about it, and do whatever makes each of us feel the best - whether it be bald, scarf, wig, whatever. The halo wig I bought is like a hat wig, but I can wear any kind of hat with it, so it's a little more versatile.  And Colleen, go on your trip - it is so beneficial to get away from all the "health stuff" - have a great time.

  • traci43
    traci43 Member Posts: 773 Member
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    hair loss

    It sounds like you'll feel better getting the chemo, than no and I understand that.  I've gone 12 rounds of FOLFOX in 2007 and 14 in 2009 and had a bit of thinning but not much.  I even went ahead and continued to color my hair in 2009 although I switched to a more natural type of hair color product.  Everyone is different, you may or may not lose your hair, but if you do own it!  I loved That comment from Sue.  Smile  I agree with Abrub, ask for an extra week in between treatment for Vegas, I did that several times since I didn't want treatment to stop me from doing fun things.  Good luck to you, Traci

  • traci43
    traci43 Member Posts: 773 Member
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    quick PS

    While your Oncologist and his nurse sound good, that chemo nurse sucked!  Hopefully someone else will help you next time.

  • thruby
    thruby Member Posts: 7
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    You are not far behind me

    I had my first treatment on October 12th and go for my third one next Wednedsay. I have not experienced any hair loss so far and have handled the treatments well. My oncologist said I may not notice anything different with my hair. I did cancel all my planned travel because I wanted to minimize my exposure to sick people as a precaution to white blood cells being low, plus one of my trips was out of the country and also would require a major change in my treatment schedule.  I do work full-time except on treatment days and that has been going very well.  I'm finding the more active I stay the better I feel. In fact this week I am bouncing with energy. I have not changed much in my life habits, still enjoy my wine (just not as much) and occasional bad eating habits.  I figure I will wait for my firsts scan in December how things are going before I make any drastic lifestyle changes.

    I say if you are looking forward to Las Vegan, then go.  You deserve it.

     

    Terri

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited November 2016 #16
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    Went to Vegas after all 12

    Went to Vegas after all 12 folfox treaments were done, head hair was thinner, but there. Moustache, eyebrows, still there, but I would have gone bald. Hats I would wear in Vegas in January anyway, because it can be cool in the day and freezing at night. Go have fun, you'll have earned some

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited November 2016 #17
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    Went to Vegas after all 12

    Went to Vegas after all 12 folfox treaments were done, head hair was thinner, but there. Moustache, eyebrows, still there, but I would have gone bald. Hats I would wear in Vegas in January anyway, because it can be cool in the day and freezing at night. Go have fun, you'll have earned some

    Ask around about the cold cap

    Ask around about the cold cap, something you freeze, wear during clinic treatment, and it's supposed to protect your hair by constricting blood supply to your scalp. That's all I know about it.

  • Cris60
    Cris60 Member Posts: 1
    edited November 2016 #18
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    Colon cancer

    I've just finished my 12th treatment of 5FU, along with two other chemo drugs.  I lost a lot of my hair but not all of it.  My eye lashes and eyebrows are gone.  My hands and feet did burn and blister then peel.  Watch closely for diarrhea and don't let yourself go long before you left your dr. Know.  I ended up in the hospital for four days.  I had hand assist surgery to remove part of my large intestine and part of my colon in April.  I had one of 35 nodes come back with cancer cells.  Good luck with your treatments. 

  • kmygil
    kmygil Member Posts: 876 Member
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    You say when

    I am now 10 years NED for my colon cancer, and 9 years for the uterine.  Yeah, we have HNPCC in our family.  I did Folfox after resection.  The regiment called for 12 treatments, but I called a halt after 9 and my oncologist agreed.  There were too many negatives at that point and, as he said, "The point of treatment is to cure, not kill."  LOL!  Anyway, do what you feel you should after getting all your information, but if the side effects start to become overly serious (I had a blood clot, neuropathy in all limbs, very low blood pressure due to being unable to eat or drink properly, systemic yeast, blah, blah, blah) then say "when."  Only you can make that determination and it's a week-to-week, sometimes day-to-day self assessment.  Listen to your body.  Think about after it's over.  Visualize yourself completely cancer free.  Hugs.

    Kirsten