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CMF Question

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Comments

  • windward
    windward Member Posts: 57
    edited February 2016

    Hi Trisha,

    I have lots of information for you about cold caps etc, and would be glad to "talk" with you " back channel"

    I think if you click on my name it will bring you to a page that offers option to send a private message. If you do that, and tell me your email address, I will be glad to talk with you.

    BUT in the meantime, it is absolutely necessary to follow the instructions and keep the cold caps on for the 3 hours ( or was it 4?) following infusion. No shortcuts!

    i hour before and all those hours afterwards!

    Wenrisa, How did the SE of # 6 go? Did the new meds help with the nausea.? I did not do acupuncture, but I believe it does help strengthen the immune system and help with energy. It is worth a try, worst case, you get to lie down, and relax for a while, and maybe there will be some soothing music.

    Mircann, we are thinking of you. keep in mind that after a Dx of cancer doctors take every little bump and spot doubly serious, stuff they would probably not have paid attention to before, ( and which would have not turned out to be cancer anyway). So as you say, tney are following protocol, maybe also to cover themselves, or maybe just to,torture you. So sorry you have to go through this , yet again.

    I am fortunate enough to be away onvacation between chemo and when radiation starts.

    Though the first 4/5 days of vacation were spent experiencing for the first time, what cumulative effects of chemo mean. Mild, by most standards, but a surprise to me. I learned from reading and experiencing that 5-FU causes real disruption to the lining of the intestines. And also learned ,the hard way, that it is necessary to drink lots fluid so not to become dehydrated. Only fluid I could keep down was Gatorade? Strange, water made me ill. But that is over now.

    Hugs to all who are starting this CMF journey, it does have an end,

    and hugs and thanks to all who have been through it and stay on this message board to guide, and offer advice and support to newbies, and worried oldbies...

    Windward

  • mandy1313
    mandy1313 Member Posts: 978
    edited February 2016

    Tuboss,

    The worst thing is the unknown. At this time tom0rrow you will have been through tx1 and find tht it can not have lived up to your worst fears.

    Take care. And let us know how it went.

    hugs

    Mandy1313

  • Wenrisa
    Wenrisa Member Posts: 59
    edited February 2016

    on day 4 after treatment #6. Still feeling a little off and tired... Wish this was all over. Very emotional these past few days... Will I make I through 2 more

  • SueH58
    SueH58 Member Posts: 106
    edited February 2016

    Tuboss. I hope your treatment went well. I would have said that I wouldn't do cold caps (I didn't), but I also didn't get steroids or neulasta. And, through healthy eating throughout chemo, I actually lost 10 lbs.

    I also used Nioxin which helps to grow hair because it cleans the folicles so well. But I ended up with such DRY hair!!! I found an ultra expensive shampoo by Pureology--Gold Nano. It's VERY expensive, but treat yourself cuz it works like a charm and lasts forever. Turns straw hair into real hair.

    I was always careful about how much heat I applied to my hair, but did get color throughout my treatment (no highlights tho). My chemo started 4/29 and ended mid-August, and I had a respectable amount of hair for my daughter's October 3 wedding.

    I hope this helps, and I hope you're doing well.


    Sue

  • ritajean
    ritajean Member Posts: 4,042
    edited February 2016

    Wenrisa.....You are on the downhill slide now.....You can do it!

    Winking

  • windward
    windward Member Posts: 57
    edited February 2016

    Hi Tuboss,

    How did your first infusion go? Are you doing cold caps? As I wrote earlier I did them, and would be glad to share my experience, a positive one, with you. Just ask...

    As for nervous, I hope your MO gave you Rx for Ativan, as well as for Zofran and Compazine for just in case. Though I have a friend who took Ativan every evening during the months she was having chemo. And I got Ativan along with the steroid and anti-nausea meds given intravenously, before each infusion. Was very helpful.

    Wenrisa, A side effect of chemo is emotional ups and downs. Hormones, and body chemistry are totally effected.. so there is chemo brain, ( which you have heard about as well as emotional swings, etc.. ) I also discovered, the chemo gave me a temporary case of the verbal 'runs', especially when I was emailing friends. It was a relief when my ordinary filters started to work again. So have some compassion for yourself, and try to go with the flow, which will in time stop, and you will feel like yourself again.

    I hope your new nausea meds helped and that your MO found the right one for you.

    We are all part of your count down cheering section!

  • ml143333
    ml143333 Member Posts: 190
    edited February 2016

    Wenrisa - you can do this! Only 2 more to go! We're in your pocket all the way!

  • mandy1313
    mandy1313 Member Posts: 978
    edited February 2016

    Wenrisa, I felt the same as you after my 6th tx--I didn't know if I would go on. So I took it one tx at a time. And in the end, I did all 8 tx. You are almost home so try to hang in there!


    Tuboss: I hope your first tx went well. I never used cold caps. I did however cut my hair to a fairly short haircut. While I did have some hair loss, it was never visible to anyoone except me . My hairdresser claimed she'd never seen anyone on chemo with hair like mine. but what ever you decide to do is the right decision and don't look back.


    Hugs to all

    Mandy1313

  • Wenrisa
    Wenrisa Member Posts: 59
    edited February 2016

    thank you all for the encouragement! It really helps! I always get frustrated and emotional after an infusion. But after the side effects go away after about a week and I start to feel (almost) normal again I know in another week I'll end up there again. Even if I say I don't know if I can do anymore!!!

    The new anti nausea meds didn't help:(. I felt pretty bad this time, kinda like I did the first time. I just wish it was consistent levels. The time before last I hardly had any nausea at all... I wonder if it's even nausea at all - it's more like rocks in my stomach; a heaviness. They gave me steroids (same as what they give me in prep meds) but all it proceeded to do was make me crazy. Don't like the steroids and won't take them again...

    Hope you are all well and hanging in there yourselves! Please pray for me on the 3rd as I go for my 7th and next to last infusion

  • ritajean
    ritajean Member Posts: 4,042
    edited February 2016

    Wenrisa, I am sorry that you had bad nausea again this past treatment. I will indeed pray for you. You are about done! YEAH!!!

  • mandy1313
    mandy1313 Member Posts: 978
    edited February 2016

    Wenrisa: sorry that you had nausea again. If you are game to try yet another anti-nausea, I recommend Emend and Kytril. I only used four emend pills but it was combined with kytril (if you are interested I can look into how they were divided). They were the only thing that helped my nausea. But you are almost at the end and as the chemo leaves your system, you will start to feel much as you did pre chemo. So remember to come here and let us know how you are doing and we will be cheering you on as you go to TX#8. Hugs.

  • Wenrisa
    Wenrisa Member Posts: 59
    edited February 2016

    hey all - question for you... Did you have muga scans or echoes before or during CMF? I know other people indifferent types of chemo do due to the cardio toxicity... Isn't the F in CMF somewhat cardio toxic? I ask this because when my mom went through chemo 13 years back she ended up with congestive heart failure from the chemo (not CMF!) but I'm a bit paranoid this or similar will happen to me... What's been your experience? Thanks

  • softness1
    softness1 Member Posts: 100
    edited February 2016

    Prior to chemo, my Onco made sure that I had a Muga scan to make sure my heart was healthy enough for treatment.

  • ritajean
    ritajean Member Posts: 4,042
    edited February 2016

    I didn't have any of those scans either before, during, or after chemo.

  • ml143333
    ml143333 Member Posts: 190
    edited March 2016

    I also did not have any scans before or after chemo.

  • Wenrisa
    Wenrisa Member Posts: 59
    edited March 2016

    ok seems like it's not out of the question to not have them before CMF. Makes me feel better! LO

  • Wenrisa
    Wenrisa Member Posts: 59
    edited March 2016

    #7 was completed on Thursday... Hanging in there so far. Making it a mental game and just telling myself I feel alright. And so far it's working! Just tired so I rest but the nausea hasn't been too bad. Lots of ginger and peppermint tea and candies. Maybe that's the difference this time! LOL

    Hope you are all well

  • windward
    windward Member Posts: 57
    edited March 2016

    Wenrisa, you are almost there. You are a real trooper for hanging in, and dealing with whatever CMF , with it's wonderful curative powers, had in store for on you each of your Thursdays. Hope the nausea remains tolerable. As you have heard, having a heart eval before chemo is not automatically done, some of us had it, and some not. Since your mother did have cardiac complications from chemo, (though her chemo was probably much more toxic that CMF) why not ask for a kind of baseline echo or muga scan after chemo and before rads. Might be good to have it in your chart, and this way you won't have to revisit the idea with " should I haves".

    Remember we are all in the final infusion week, with you.






  • ritajean
    ritajean Member Posts: 4,042
    edited March 2016

    Wenrisa....so glad that you're handling this last treatment much better! One more, gal! You have about licked this chemo thing! Yay for you!

    Good luck to all of you who will be going through that last chemo shortly. You are indeed on the downhill slide. Hugs!

  • ritajean
    ritajean Member Posts: 4,042
    edited March 2016

    Just popping in to check on all of you and to bump up our thread so it is easier for others to find. I hope everyone is doing well.

  • Wenrisa
    Wenrisa Member Posts: 59
    edited March 2016

    This is it! Chemo #8 is going down today on St Patrick's day. Then I just get through this weekend and I'm all over it! Rads scheduled to start sometime the week of April 11th.

    Hope you all are well! Is anyone else still going through treatment? I guess CMF isn't that popular cuz my rads dr actually said oh you're the CMF girl, like I was the only one in the center..

  • mandy1313
    mandy1313 Member Posts: 978
    edited March 2016

    Way to go Wenrisa!!!! St Patty's day will bring you good luck! You made it!!!! Hugzzz! Mandy1313

  • ml143333
    ml143333 Member Posts: 190
    edited March 2016

    WooHoo Wenrisa!

    You made it! Today is the day that chemo is done! Give yourself some time, but your body will come around after chemo.

    Watch out world - here she comes!

    Happy St Patty's Day to ya!

  • Wenrisa
    Wenrisa Member Posts: 59
    edited March 2016

    thank you Mandy1313 and ml143333! Your encouragement definitely helped me make it this far! (ritajean and windward too). I was so ready to quit about 1/2 way through but I made it to the end! So happy it's over! Just need to get through the side effects the next few days and then I'll feel even better!

    Next up 6 weeks ofradiation!

  • windward
    windward Member Posts: 57
    edited March 2016


    Big Shout Out to you Wenrisa!

    You did it!! Smart enough to rant and rave to us who understand, and brave enough to soldier through it! And though you may feel crappy today and for the next few days,soon it will be over!! After I finished, only a mere 4 compared to what you went through, I had a wonderful facial and neck massage, bought some new makeup and glowed , at least for a few days. Make up is good thing.

    I am now 6 days into my 28 days of radiation. Worst of it is lying on the board with arms in weird stirrups. Like being on some torture rack! But after initial measurements have been done, the daily rads are quick and easy. Over in 15 minutes.

    Hope you are soon over the chemo SE, and back to normal, except it's a new normal due to cumulative effects of chemo.. for a while. Shedding continues, tiredness and intestinal episodes come and go for a bunch of days, but mostly all manageable. And then it gets better and you begin to feel yourself again.

    Take care of your self now.

    Big Hug,

    Windward




  • ritajean
    ritajean Member Posts: 4,042
    edited March 2016

    YEA Wenrisa! You did it! I knew you could make it all the way through! It will take you a week or so to feel a little better but things are going to turn around for you now! The fatigue will pass and you'll feel much perkier!

    As for the rads, they were mainly an inconvenience to me. It took longer to get there, get your clothes off and back on, and get back home than it did to have them zap you and it cut into your day. I faithfully used the cream that they gave me and didn't have any severe skin problems. I lived in Cuddle Duds when I was at home. They were so soft and felt so good against my skin.

    Yep! Things are only going to get better now! CONGRATS! YOU DID IT! Now you still have to stick around here and let us know how the rads are going! ((((HUGS))))))




  • ritajean
    ritajean Member Posts: 4,042
    edited March 2016

    Windward.....so glad that you are about through with the rads and doing well with them! It won't be long and you will be a RAD GRAD!!!

  • windward
    windward Member Posts: 57
    edited March 2016
    Ritajean, Thanks so much for cheering me /us on. Had my 10th rad today. They are going so fast. From what I read I am heading into the side effect zone. Wondering how it will be for me. So many sisters have so many different experiences. I have to wonder if we all get the same radiation intensity. Of course, the differences may be due to the lingering effects of the chemo in the body.
    Saw the RO today for weekly check in, I told her I was using a non-absorbent pad after using the night cream to make sure it did not all come off on my nightgown. Her response was, if any parts of the pad stick to my skin, do not pull it off as it can pull the skin off with it! ( Yuck!). Told me to wash it off in the shower with soap, like taking the price tah label off some glass or dish. Peeling skin off does not sound like fun.

    Hugs to all,

    Windward
  • ritajean
    ritajean Member Posts: 4,042
    edited March 2016

    Windward.....I had very few side effects from the rads and I hope it is the same for you. Wow! I'm not sure I'd use those pads. If they stick to you during the night, they might pull some skin off when you toss and turn. Could you wear just a soft cami or those Cuddle Duds to bed instead of your good nightgown?

    As far as those side effects go, I smeared that cream on faithfully and had no burning. I got a rash under my bra line and they told me to use cornstarch on it and that took care of the problem. I didn't even feel very tired until the last few, which they called "boosts" and I recovered very quickly. We will keep our fingers crossed that it just as easy for you. Hugs!

  • mandy1313
    mandy1313 Member Posts: 978
    edited March 2016

    Windward, I agree with everything Ritajean said. , I also would not use those pads....I would put the cream on and let it absorb so there was nothing to rub off. I also slept in cotton t-shirts during rads as they were soft and comfy. I also bought a very soft cotton robe to wear. Just a thought. :-)

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