CMF Question
Comments
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Just a quick update. Feeling better today than thorough the night! Flu like and nauseous but bearable. Sorry for middle of the night ramblings!
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I had my beautician do my roots once midway through and highlighted the rest of the time. My onc told me there was no problem with this if I did it only a few times.0 -
Lillypoppy, you have one down! Glad to hear that the side effects were not too awful. I had to use the anti-nausea meds for several days so you seem to be better than I was. And I went onto amazon.co.uk--they do have the nioxin shampoo and conditioner that I used (at Ritajean's suggestion) to help my hair deal with chemo. So if you want to try it, you can get it in the UK.
Liz: how are you doing?
Take care everyone and enjoy the weekend.
Mandy0 -
I am doing well, very little "manageable side effects" this far. How is everyone?
Liz0 -
Mandy : thank you for advice re shampoo x
Ritajean : May brave highlights bit further on when see how my hair holds up xx
Liz : hope you're still feeling ok. Did you have your 2nd infusion Thursday?
Managed an hour at the Christmas market today and a walk with my dogs in the park. Can eat small bits but then feel nauseous but trying small and often. So all in all not too bad. Have set up something positive to do each day this week before 2nd infusion Friday. One more day of steroids. Did anyone not have them? Just interested xx0 -
Hi Lillypopy and emq, I just popped on here and saw you guys are starting your battles. We are here for you. Ritajean was awesome for me during my chemo. If you have any questions, I'd be happy to help you too. I will be one year diagnosed on the 18th! I can't believe it's already been a year. It was a long one, with surgery, chemo and radiation, but I made it through and you will too. Don't be afraid to take the nausea medicine, that's what it is there for. I used to flip flop between Compazine and Zofran so that I had continuous nausea protection. Believe me if you have it one, you never want it again. (That is what happened to me). I also colored my hair. (I did my roots myself) constantly during the whole thing. My doctor was ok with it. I am also a fitness instructor and was able to keep teaching 2 zumba classes a week once I healed from the lumpectomy and port insertion. How are you doing? Please inbox me or just ask me anything. I am happy to help you all too! xo Good luck! Robin
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That's really kind of you Robin. What regime of CMF did you have if you don't mind me asking? Did your hair hold out ok? I'm on my second infusion on Friday (IV cmf on days 1&8 then day 20 day break ready for cycle 2 - effectively 12 infusions over 6 months) seems ages until May! Did you find the se's accumulative or relatively stable throughout? Think I could manage if they stayed similar to the moment - not nice - but bearable.
Support on this thread is great and I'm humbled by how you ladies who have passed your treatments are still supporting others. Thank you xx0 -
emq - glad to hear you are doing well! Sorry I have been absent - I participate in a clinical trial for Her2+ in Washington, D.C. and traveled up there for a few days last week for my vaccine booster.
ritajean - FL has been very nice - just got a taste of ice and snow last week on my trip - was glad to return here where you don't have to scrape off your car and warm it up for 10 minutes before driving it, lol! Glad you will be coming down for a weather reprieve!
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Lillypoppy I had CMF total infusion every two weeks. The first week they gave me the nulestra (spelling??) shot to keep my white blood cell count up and I landed on the floor nauseous and back in the chair getting fluids the next day. I was not managing my nausea meds properly. They gave me a patch to start the day before to control nausea, then Compazine and Zofran which I alternated every 3 to 4 hours and that helped me tremendously. My hair held out great. It definitely thinned, don't get me wrong, but no one but me would know. It was HUGE factor to me, to not lose my hair. I'm a short Italian girl with a ton of hair, so I think that helped too. I started February 13th and went to May 22nd. It felt endless! It felt like I was living to be done with the treatment. But it's over. And once it's over, it's over!!!! I would get treatment on Wednesday. I would be able to teach my zumba class the next night, (cause I'd be hopped up on steroids). By Friday, I'd crash from exhaustion. Saturday I'd be ok, but would lay low. Sunday am I was able to teach my class again. Then home free til the next infusion. I think the 7th or 8th treatment was the worst for me. But by worst, it's NOTHING like the other kind of chemo. It's definitely doable. I did gain almost 20 lbs. From the meds and from not being as active as before. The nutritionist at my oncologist put me on a high protein low carb diet and it's all off now. Looking at me you'd never know what kind of a year I had had.
Did I cover all your points? I used a biotin shampoo that I got from the supermarket. It's purple and round with a gold top, I think that helped my hair too. :-) Ask me if I forgot anything, my short term memory is not the same as it used to be!
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Robin...your memory might not be what it once was, but you are sure looking good, gal! Gosh...it's been one year for you. Wonderful! Celebrate your cancerversary by doing something special just for you! Life is good.
I go to Peoria to Susan G. Komen for my yearly mammo and tests on Friday. I always get nervous and anxious about this. I have had no signs of problems but I still always have that nagging "what if this is the time the shoe drops again" feeling. I will be glad when they are over and the results are back. Hopefully I will be celebrating.
I'm off to sort Christmas presents and put them in tubs to take to Mississippi on Sunday. Can't wait to get my hands on those three grandsons. We're going down a few days early which will be lots of fun!
SpecialK....does your special trial involve infusions, pills, other special meds? I think it would be exciting to be involved in current research and wish you best!0 -
Hi ladies, just popping in to say hi and get caught up with the thread. It's been a busy thread, which is nice. I had Tx4 last week. A little more fatigue this time around--I was able to make it to my zumba class the next day--while I was still high on steroids and before my Neulasta shot had kicked in. On Saturday, I pretty much laid on the couch and slept. I had planned to go snowboarding but there was just no way. I felt better by yesterday so this was the longest "recovery" from SEs that I've had but even at that, it's been minimal.
My bones still hurt from the Neulasta shot though. It's not horrible pain--just twinges from time to time--but I'm surprised it's still around. I had my shot last Thursday.
I'm so jealous of those of you in FL! We have had over 5 feet of snow where I live. Ritajean--I used to live in that Florida city you are visiting soon. It's a nice place! Good luck with your checkup--I'm sure it will be fine but understand the anxiety.0 -
Macy, Please refresh this poor memory. Are you doing 6 or 8 treatments? Unfortunately, they are cumulative. There is still some chemical from the last one in your system when you get your new dose so it adds up slightly in the body as your treatments progress. I think that's what causes the fatigue. Keep pumping the water or liquids into your body. That keeps the chemicals moving through your body. If you get to the point where water tastes horrible, try crystal light or suck on ice chips. I think you are doing great! Hang in there. Hugs!0 -
ritajean, I am doing 8 treatments. Tx3 was absolutely no problem for me but this time it was a little more with the side effects. It was like my poor body was saying, "oh no, not this stuff again." I was afraid they were cumulative!
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You can handle the cumulative effect by keeping hydrated and by listening to your body and resting when it's needed. Also mild activity like walking sometimes helps instead of being sedentary. You will do O.K.
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Hi Macy! I never needed the neulasta shot but from heresay, I understand that claritin (which is an anti-histamine) can lesson the side effects. I think they took it before and continued it, but check with your onc to see if it is ok for you. I had alot of side effects from CMF and the one that sticks with me is the fatigue which got worse with each treatment. I tried to just keep going and to walk every day....and as Robin said, once it's over, it's over and you can continue on. Whatever Ritajean says is right though I became unable to stand the taste of water and ice--so I drank ginger flavored beverages and had lemon Italian ice during my tx.
emq--glad you are doing well.
Lillypoppy, will be thinking of you on Friday when you have your tx.
Hugs to all of my sisters here.
Mandy
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For Neulasta take a 24-hour regular Claritin (not Claritin D) an hour before your injection, and continue for several days afterward. Claritin helps lessen the bone pain that comes from the marrow expansion by easing the edema (swelling ) in the marrow that happens as the excess white cells are produced.
ritajean - the trial I am doing is a vaccine trial for Her2+ recurrence prevention. It involves two injections into the leg, one is the vaccine (if you are in the active leg of the trial) and the other is sargramostim, which is similar to Neulasta. If you are in the placebo arm, you get two of the sargramostim. Because Her2+ can recur quickly this vaccine is being developed to be given either with treatment of shortly after. I have felt fortunate to possibly derive personal benefit, but also to help advance the science for those who are diagnosed after me. I was lucky to receive Herceptin when I was diagnosed, so this is a way to pay it forward, and honor those people who were in trials to bring Herceptin to the market.
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SpecialK....Do you know if you are getting the vaccine or if you're getting the placebo? How I admire you for doing this!
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ritajean - one of the reasons I chose this trial was because at the very least I get the immune boost injection (or two of them) since that is the placebo, so I felt that I would derive some benefit even if sorted into the non-vaccine receiving arm. I do know someone who was in this trial and did not have any adverse side effects after the injections, and was in fact in the "placebo" arm. I do have side effects - fatigue and malaise - so I suspect that I may be getting the vaccine, but I will not know until the conclusion of the study, so a few more years. The other thing is that I get to go to Washington, D.C. and see my son and lots of old friends, so it has been fun too!
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You may be right about getting the vaccine. I didn't figure they would tell you but was curious. It sounds like no matter what, it's a win-win situation for you. You go, gal! :-)
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Hey Lillypoppy, if I have my dates right, you have your second tx tomorrow (today over the pond where you are). Just know we are thinking of you and holding your hand.
Ritajean, thinking of you as you go for your tests. I know you can't wait till you hear the "all clear." I never think of anything until I go in for follow up...my appointment is on January 6......so I'm sending you good positive thoughts for your visit tomorrow and a big hug to get you through.
Liz and Macy: sending you good wishes.
I'll stop in again before Christmas...but send my love to you all.
Mandy
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Just checking in quickly before nurse arrives for chemo. X had a very up and down week some bad some better days.
Mandy - thank you so much for your kind words - it really helps.
Robin - thank you for your advice and hearing about your hair inspires me to keep positive.
Macy - hope you are feeling better after your latest infusion.
Rita Jean - thinking about you today - hope all goes well with your review x sending love x
All you ladies really inspire me - such a beautiful group of women who despite some of you being over your treatment keep on giving to others. Thank you x
Just one question - any suggestions for sore mouth/gums please? Xx
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Hi ladies! I am feeling a lot better now that it has been over a week since Tx4.
Ritajean: thank you again for your advice and words of encouragement.
Mandy: I've heard about taking Claritin for the bone pain. It is not horrible pain, just annoying and I don't seem to get it every time. Thanks for the well-wishes.
SpecialK: thank you for doing that trial for all us Her2+ ladies. I would love to hear more about it sometime. And you advice on these boards is so helpful!
LillyPoppy: my onc nurses suggested using a salt/baking soda mouth rinse to help prevent, soothe and heal a sore mouth. I try to use the rinse starting a couple of days before treatment and then continue until 2-3 days afterward. I have not had a lot of trouble with a sore mouth, which is good. I've had a few sores but the rinse really helped. The best thing about the baking soda/salt rinse is that it costs nothing and it is all natural. I know there are also some prescription mouth rinses but I am trying to avoid using anything else chemically.
Thank you to all of you who have helped me along the way! I'm halfway there and I'm doing this!
Good luck to the new ladies who have started. It's nice to have some sisters who are here with me. 0 -
Hi Lillypoppy:
In addition to the baking soda/salt rinse that Macy suggested, I have some additional ideas. I never could use the chemical rinses because they made me nauseous as did many things while I was in treatment. I did use a salt rinse which did help with pain but did not prevent sores, which happened because I developed a very dry mouth. This is what my onc eventually recommended for mouth sores: (1) suck on ice or on an ice pop (ice lolly I think they are called in UK) during the infusion. (2) acupuncture. After my second tx, when I had many side effects, I began acupuncture once a week for the rest of my treatment--it really helped reduce side effects and I had no new mouth sores once I began acupuncture (there is a study now looking at how acupuncture helps with side effects). Alas, it was not covered by insurance so I had to pay cash for it, but it was worth every penny. I got the name of an acupuncturist from my primary care physician.
Cheers.
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Hi ladies - hope you have all had a wonderful Christmas x
Ive been quiet on here following infusion last Friday basically as I have been very ill following. On Friday following initially I wasn't too bad to be fair but by 2am Saturday morning I had started vomiting in earnest. By 2pm Saturday afternoon after 12 hours of vomiting and being delirious with sheer exhaustion ( sorry if too much info but basically vomiting bile every 15 mins from 10am) I became so exhausted and dehydrated (was hallucinating visually and auditory) cold sweats++ (no temp) I was eventually admitted to hospital. After being on IV anti-sickness and being rehydrated with IV fluids for 24 hours I felt much better but not well.
I was eventually discharged the evening of 23rd. My normal oncologist is on annual leave and I saw a different consultant who told me that my liver enzyme blood results showed my liver was inflamed and the chemo had irritated my liver and to discuss with my oncologist when he returns.
I have to say this experience has really scared me. There's been points when I have felt over the past few days if I should carry on with the chemo at all. I'm not sure I could do that again and even the thought of the next chemo is petrifying me. Seriously I'm a strong woman and have been through a lot in life but this confuses me as to if I'm doing the right thing. I'm due 10 more (day 1&8 x6 cycles - so cycle 1 done). The reason for me having chemo was my Oncotype was 30. I chose CMF after reading and thinking it was a lighter "doable" chemo with less chance of long term side effects on my body.
I feel bad as many of you have done this and done so well and I'm frustrated with myself that I'm struggling already. My gut feeling is that day 1&8 was too much for me and if I had been on the 21 day cycle it may be more tolerable for me - although this is no longer protocol in UK. I would really welcome any help/advice/thoughts.
Thank you xxx
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Macy and Mandy
Wanted to add - thank you for your great advice re sore mouth. I really appreciate it x
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@Lillypoppy, I don't wonder you are scared. You have a frightening experience. It may be that by changing or adjusting the dose of your medications, your nausea can be much better controlled. I had bad nausea the first week of taxol (although nothing like as severe as what you have experienced) but my oncologist changed one of my medications and since then I've had no nausea at all. It may be that a simple change like this will enable you to continue with CMF, if that's what you decide to do. But if I had had such a severe reaction I think I would be inclined to ask my oncologist what other chemo regimen might be suitable, in case you decide you don't want to risk having such severe nausea again. I also ended up in the hospital with a reaction to CMF but it wasn't until the end of my series of infusions, and I ended up skipping the last one altogether because I was so sick.
As to feeling bad, I don't see any reason why you should. You just had a different reaction to a medication than most people do. If you were lactose intolerant or allergic to nuts, would you feel bad or frustrated with yourself because you needed to avoid these foods even though most people can eat them with no problem? No? Then why be troubled by your unusually severe reaction to CMF? In my opinion, side effects bad enough to require hospitalization on the first round of six amply justify questioning whether to continue with the other five. Why not ask your oncologist when he returns what other kind of chemotherapy would be appropriate for you, or even seek a second opinion?
I hope that helps, that your Christmas was joyous in spite of everything, and that you find clarity about your treatment plan, whether to persevere with CMF or change to a different chemo.
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Lillypoppy! How horrible and scary. My first infusion was also awful, I ended up on the floor with nausea and chills and ended up back at the oncologist 1st thing in the morning for an infusion to help with dehydradtion. Here is what they did for me. They started me on a patch it's called a Sancuso patch. I would put it on at home the day before my infusion (I got a port and got all 3 meds every 2 weeks). I would put it on - on Tuesday, get my infusion on Wednesday and wear it until Saturday. The sancuso patch is for help with chemo nausea. They also gave me Zofran and Compazine, which I took every 4 hours without fail, I flip flopped. I would take Zofran, then Compazine, then Zofran, so that I was never without nausea meds. Cause once the nausea starts, it's hard to stop it. I had ginger candy, ginger ale and lemon drops but phased them out once I got used to the meds. I didn't need them as much. I used the biotene spray for mouth sores. I am so sorry your first infusion was so bad. Definitely talk to your doctor about the type of treatment and maybe they can adjust it. A 30 for an oncotype score is scary and you want to do something. (Not to the point of making yourself sicker, I understand that) My oncotype was 19 and I did the CMF. It had also spread to one lymph node. The steroids were making me manic, so we switched it and put me on a different pill but I had an allergic reaction and I broke out in hives so I went back to being a maniac. :-) Was worth it. Once we switched to me wearing the patch and controlling my nausea meds better, I didn't have much trouble with that again.
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Ritajean! How did you make out on your tests?? I am thinking of you and praying all went well!! I go for my first mammo and ultrasound next Friday. I will never go calmly to an appointment again! Keep me posted on how you did. xoxo Robin
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Can someone please weigh in: I'm taking oral cytoxan 14 days on, 14 days off, with infusions of methotrexate and 5 fu twice a month. For those of you that were on the oral cytoxan route, how did your hair hold up? I'm at the end of my first 2 weeks off and only having mild shedding, a few hairs a day, as far as I've noticed. My doctor put me on this regimen to help me hold onto my hair.
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Robin and Curveball: Thank you so much for all your fantastic advice. My oncologist returns from leave tomorrow so I plan to take all your suggestions and put them to him. I like the idea of the nausea patch and I will ask him if available in UK - if indeed he suggest carrying on with same regime.
Your recounts of your experiences are so helpful and I'm very grateful for you taking the time. Robin - good luck with Friday. I too have been looking for Ritajean to check in. Hope she had good results from her appointment.
Marciniakk - can't help you with advice re hair as I'm on all IV (also like you just finished 2nd infusion of cycle 1) but I'm sure the other ladies will be able to. Hope you're feeling ok x
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