CMF Question
Comments
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Here's to an uneventful treatment emq2!!!
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emq - just got on this thread & heard you are starting chemo today - hoping that it goes easily for you. I wanted to add one thing which you might have already heard. I didn't realize until the end of my treatments that the nurses who administered it were a wealth of information - I wish I had known earlier because they've been doing this a long time & really had ideas that I hadn't heard anywhere else. Again, hope everything went well today.0 -
Sending hugs your way emq. Let us know how it goes! It sounds like you went well-prepared!0 -
Thanks to ALL of you...yes, I went prepared. I had a break down this AM when I sat and stared at the first 7 Cytoxen in my hand. I also took the Zofran. I took the chance and hoped I would not get the Decodron/Zofran headache; although it turns out I was not required to have Decodron anyway. I made sure I ate, packed my bag and off I went.
Once again, the first time walking into the infusion room, I felt like I was in a blackout state. My reality smacked me in the face.
I had contacted the nurse yesterday since I was told NOT to remove the gauze from my port site. The nurse told me that the infusion nurses would numb it when I arrived. Well, what she FAILED to tell me was I would have to bring my Lidocaine. Since I didn't have it, I got my first needle in my port without numbing it first.
The nurse was awesome. Very nice and accommodating. They gave me a beautiful blanket. I had my own little tv. They gave me Ativan IV to calm me, however, I think I will be ok the next time. It was just the fear of the unknown on this first one.
No Nausea (taking meds as prescribed), a little fatigued most likely from Ativan, a metallic taste in my mouth a very slight headache earlier, but overall "doable"
Hope all went well with everyone else!!!!
Hugs to all
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Liz0 -
Liz....WONDERFUL!!!!! Be sure to drink plenty of water the next three or four days. That will help flush the chemicals through your system. Whew! You have the hardest one done because now you will know what to expect! So glad it went well for you. Sometimes lemon drops or crystal light will help with the metallic taste.
So glad the first one is over!!!! Now just listen to your body and you will do just fine.0 -
Ziggypop and softness1...Thank you and yes, the nurse was a wealth of information. I laughed because I was telling her what I already learned (from these boards and all of you). She even made a comment, "You have really done your research." I said, "Yes, I thank GOD for "The Boards" and all the woman on them."
It's true, I am a Mental Health Therapist, and YOU all have been my therapists! I don't know what I would do without all of you!!!
Rita: I don't have to tell you..."You and Special K especially have been my Angels". I realized today that I get 12 infusions (like a boxer has 12 rounds, I will "knock out each one until this cancer is KO'd forever!!!!). LOL
Hugs to ALL!
Liz0 -
emq - what a sweet thing to say! Thank you!
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Well it's TRUE!!!))))0 -
Liz....I KNOW you will just continue to knock out those cancer cells if any are still lurking anywhere. You are our fighter and we are your cheerleaders!!! So how are feeling now? Any nausea yet?
Special K...I envy you the warm Florida sunshine! It is really cold in Illinois and we're getting snow flurries. We are heading for Cape Coral in January and I can't wait to get there. These old bones of mine rebel with the cold temps! I will wave at you when we go by Tampa! My folks spent several years in Valrico, which is fairly close to your area. They came back to Illinois when their health started to fail so they could be around family.
Liz...you might want to get a journal and jot down dates of treatments, any side effects and emotions. I still go back and reread mine every so often. We think we will never forget the treatment days but time does dull our memories. Also, writing things down seemed to help me cope with the situation better, too.0 -
Rita:
Yes small bouts of nausea but trying to stay clear of Zofran and just take the Compazine. It's working ok overall. I am drinking a hot cup of Peppermint tea with honey.
My sister in law gave me a journal so yes, I am jotting down side effects and emotions. This AM I woke up feeling slight flu-like symptoms. It was so difficult to get anything in my system but I did. Just enough to take the Cytoxen/Compazine. I ended up taking a nap about an hour later and felt better.
Thank you for asking.
How are you???0 -
You shouldn't have much more nausea. I was almost always over any queasiness by the fourth day after the treatments. It sounds like you're doing all the right things. Hang in there. Then you'll have a few weeks of chemo holiday before your next infusion! :-)
I am doing just fine! A friend and I are going into Peoria tomorrow to hopefully finish up our Christmas shopping. We'll have lots of fun!
Keep us updated!!!0 -
Hi All
I have followed this page intently for the past 2 weeks whilst making my decisions on chemotherapy. I was all set NOT to have chemo until my Oncotype returned a score of 30. I have worked in the NHS in the UK for many years and have seen the effects chemo can have and this as well as the hair loss made my decision to ask oncologist for CMF.
I wanted to thank all previous contributors as the discussions have certainly helped me. Thank you so much.
I am due to start the regimen this Thursday 12th - my oncologist emailed me to say that he has wishes me to follow the 28 day regimen which entails having infusions on day 1 then again on day 8 followed by break til day 28 when the cycle starts again. I am concerned as I have read all the posts and not seen anybody doing this cycle? Any thoughts would be appreciated as I am nervous of facing another infusion after only 7 days. Will I feel up to it? He wants 6 cycles ie 12 infusions in total all at regular dose (600C/40m/600F)
Thank you x0 -
@Lillypoppy, what specifically about two infusions a week apart makes you nervous? I had infusions every week for not quite six months. I won't say it was easy, but I am still here to tell the tale. Will you be getting all three meds by infusion, or will one or more be oral?0 -
thank you curveball for replying. Yes all 3 meds by infusion. I think I am just nervous at only just "recovering" from the first infusion before going on with the second. Fear of the unknown probably. I think because I had got my head around a 3 weekly infusion x6 ...it's just bothered me that he's changed it. Did you have weekly CMF and did you feel relatively ok during? I also wondered if chances of keeping my hair is reduced with 2 infusions a week apart?
Thank you for taking the time to answer x0 -
I had cytoxan pills every day and weekly infusions of the methotrexate and 5 FU. I felt OK the first couple of months, then increasing fatigue the remainder of the time. Fear of the unknown is totally reasonable—you've never done this before, right? My oncologist said there are many "recipes" as he called them, for CMF chemo. I don't know why any particular recipe is selected for any particular patient. It can't hurt to ask your doctor why you are getting this particular regimen and/or why it was changed. I kept most of my hair, even with infusions every week.0 -
Thank you so much Curveball. That really helps. And no I haven't done this before. I had an ovarian pre invasive cancer at age 29 and had full hysterectomy but didn't require chemo. I have been diagnosed with this breast ca at 41. I feel more apprehensive about the chemo than I ever did the bilateral NS mastectomy with one step implants.
Well I suppose once the first one complteted on Thursday I will settle.
Thanks again. Xx0 -
@Lillypoppy, I will add that for me anyway, anticipation is often worse than reality. I recently started a second course of chemotherapy and even though I had done chemo once before I was really afraid, sad, and upset before starting it again. Now that I am actually receiving the treatments I don't feel as bad as I did before I started.0 -
Thank you for your kind and supportive words Curveball. Sending you best wishes with your treatments. Xx0 -
Lillypoppy...I actually made myself sick the morning prior to my first chemo infusion. I was so scared and anxious. The actual treatment was very uneventful. We even stopped off for a bowl of soup after the treatment and I was just fine. I had some nausea the next day but I honestly think it was because I had worked myself up into such a "state" before I ever went. I did not have the every week infusions but I have talked to several who have. I think they like to go with the every week when it srikes about the 40 age mark or younger because it gets the chemicals into the body at a faster rate and it's good to be aggresive. I think you will find that CMF is more doable that you expect it to be and there are many wonderful women on this thread who will help you every step of the way.
Liz....how are you doing?0 -
Thank you so much for that Ritajean. I have read many of your posts over the past few weeks. They are so helpful and you are so kind helping many women many years after your own treatment. I am to have an infusion on day 1 and repeated at day 8 all IV then a break of 14 days.
I am so pleased this thread has been kept going. CMF in the UK is rare although now the Oncotype test has finally arrived here I think we will perhaps see a return of it for borderline women. My Oncotype was 30 and prior to that I had been told no chemo. I didn't want TC or similar and wanted to try to hold onto my hair if I could. Reading this thread for the past 2 weeks (every page!) really influenced my decision that I was doing the right thing. So thank you to you and all the other wonderful women who have kept it going x
Feeling a bit more settled now. I am actually having my chemo at home which will hopefully be a little more relaxed. I'm hoping to be fine by the weekend to do a little Christmas shopping - fingers crossed xx
Thank you and although not pleased to be having chemo - am pleased to be part of a lovely group of women - after reading through all the pages - feel I know a little about some ladies already! X0 -
@Ritajean, I guess there are other factors besides age—I was going on 57 when treated with CMF and had weekly infusions. I too worked myself into a "state" before my first taxol treatment—not to the extent of throwing up, but did sit there with tears running down my face all through the first infusion.
@Lillypoppy, I hope you feel well enough this weekend to do your shopping.
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Emq: How are you doing now? Is your "metal mouth" better? I had metal mouth but at first thought it was that I had been given lousy tasting water. It took me a while to figure out that it was me and not the water. I did better with sparking water and with ginger ale and Italian lemon soda which is not that sweet.
Lillypoppy: I think waiting for the first chemo is difficult because you have no idea how you will react. And each of us is different so each of us reacts differently. I went to chemo with a bag of supplies but as you will be at home, you won't need to have a traveling kit. One thing my onc suggested was to suck on ice during the infusion because it reduces mouth sores. I had lemon flavored ices I brought with me but regular ice from your freezer should do. And Ritajean suggested some special shampoo which I used on my hair (what was it called Ritajean?--I ordered it from amazon.com so perhaps amazon.co.uk might have it too). You will likely be able to do your Christmas shopping but as the stores are very crowded on the weekend, you might want to go out on Friday or Monday instead--just a thought. I realize that Friday is just a day after your chemo but you never know, you might be able to do a bit of shopping. I remember walking through a square in my city and they were giving out "elf hats" complete with bells on them. This was a day after my second infusion and I happily walked home wearing my goofy elf hat.
All the best to you ladies in treatment and hugs to all.
Mandy0 -
Curveball - thanks again x
Mandy - thank you for all your good advice - especially about the shopping trip - I hadn't thought of that. Think I will leave it until a quieter day. There's a Christmas open air European market this Sunday so I may take a walk through that if I feel ok and try to get in the festive spirit - my mind has been only on cancer and chemotherapy recently.
I think the shampoo Ritajean used was nioxin? I will order some of that. I'm desperate to keep my hair after a really tough year. Sounds vain - however if I do keep it I will end up with huge roots by end of chemo as I have blonde highlights...... Small price to pay though.
Well it's all booked for 1pm tomorrow (Thursday) so I shall go for long walk in the morning and keep calm although I'm sure you are right after the first one I will feel better about it all.
Thanks once again Mandy and curveball xx0 -
Yes, the shampoo is nioxin. Good luck tomorrow.....and I did color my hair during chemo, too!0 -
Lillypoppy, how did it go? One thing I did was to wash my hair less frequently (instead of every day, every 3rd day) while I was having chemo and I did not blow dry it. I don't know if that helped, but I thought it did.
I just returned from a trip to NYC to have dinner with 2 divas whom I met through bc.org. It's hard to believe that it's over 5 years for me---will be 6 in July. I'd never met them before but we had alot to talk about and had a great time. . I also went on a bit of a shopping spree while there--two pairs of boots for me, two ties and an expensive sweater for hubby, fluffy towels for my daughter, who I met after dinner for second dinner--not as bad as it sounds--I watched her eat mostly and sipped 1/2 glass of wine. Great day!0 -
Sounds like fun, Mandy! If I ever get your way, I want to meet you, too! :-)0 -
Well if you make it to the Northeast Ritajean, let me know and I'll try to meet up with you.
Lillypoppy and emq, how are you doing?
Hugs to all.
Mandy0 -
Mandy - thanks I will take your advice on the hair washing. Sounds like you had fun with your breastcancer.org buddies. :-)
Well my chemo got delayed a day due to the non availability of methotrexate on Thursday. I was very upset as I had prepared mentally prepared myself and the additional 24 hours felt like forever! However I had it Friday at 11am and the infusion itself actually was fine and the nurse exceptional. It is now nearly 1am UK time Saturday morn and although I'm totally exhausted I cannot sleep (? Dexmethasone induced) I feel nauseous but bearable and tried eating small amounts but feel like it just sits in my stomach. I had IV antiemetic with chemo. But my biggest issue is what I can describe as cystitis like feeling continually feeling the need to pass urine but don't really need to. I drank lots of fluids all day prior and following. I also have headache but possibly as I am so exhausted but cannot sleep.
Thanks to all for advice. Maybe once I've slept I will pick up tomorrow. Really unsure whether to take the dexamethasone prescribed for tomorrow? Sorry for giving a blow by blow account of symptoms - I normally have a high threshold but your advice so far ladies has been great xx0 -
Ritajean : thank you for advice re shampoo. Did you "highlight" your hair or full head colour? You was very brave :-)
Thank you for your support x0
