CMF Question
Comments
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Hey all - had my first treatment today. The anticipation was worse than the reality... It's been a few hours since I finished and for now I've just been tired. I think I need to get some stool softener and heartburn meds. Also I am getting neulasta injections so I got Claritin. I'm most worried about the nausea honestly. I started taking the anti-nausea meds even though I don't feel anything yet to hopefully head anything off. I'm just really tired..
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Wenrisa, that's great to hear! The anticipation is worse than the reality. It is good you took the anti-nausea meds before you have the nausea because it is easier to keep it under control that way. Be kind to yourself and get the rest your body is telling you it wants. Hugzzz!!! Mandy1313
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Hey suladogt...we always like to hear good reports like yours! They serve as an inspiration to all of us. Thanks for sharing!
mircann...I can see why you are worried about work after chemo. It is hard to multitask when we've just finished the treatments and we're apt to make blunders that we never would have made in the past. Just take your time and check things twice. You will probably find that it will go well after you get back into the work routine and get your confidence back.
Hello to everyone! I have been off the computer for a few weeks as I've been trying to get a head start on Christmas shopping. I am flyiing out to my son's the week before Christmas and Dave will drive out at the end of the week with the packages so I need to have "all my ducks in place" a little sooner than usual.
Welcome to the new gals on the thread. I think you will find the gals on this thread to be very helpful and caring. CMF chemo is not nearly as bad as some of th other types and if you do have any side effects, you'll quickly learn how to work around them. Also...ask questions here. We have all been where you are now and are armed with lots of good advice and helpful hints. Hugs to all of you!
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Dear All CMF Sisters,
Thank you for your information and cheering us newbies on. Starting Chemo tomorrow at dawn, and I now know I can't know how I will respond. The one thing I do know for sure, if I get sinus pressure or headache tell the nurse immediately.
I will take a Zofran as we start, ( unless MO says not), and an Ativan, and get cold capped ( Amy you are right it is " recommended " the more aggressive cocktails, but I wanted to do all I could to save as much as I can. If it is too much like torture and I am filled with dread about it as well as the side effects during the infusions I will only do it twice, bail out and if needed, go to a hair extension.
I was going to bed and decided to check this board before I did, and reading all your comments and reassurances makes me feel less anxious, because I am not alone.
Will keep you posted,
Thank you all,
windward
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Windward - wishing you the best today with your first treatment. I had mine yesterday and it went pretty well. I'm still feeling ok this morning and I slept very well last night. I took an Ativan before I went in but the nurse will likely give you anti-nausea meds in the line before they even start the chemo. I think I had two kinds plus a steroid maybe. Then the first two parts of chemo were done in a matter of a few minutes. Last bag they scheduled for an hour. Then they gave me my neulasta injector and a Claritin. And that was then end of it.
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Wenrisa - I am glad that you got the first infusion under your belt. Rest this weekend and let your body lead you.
Windward - Good luck today! I am sure you will do fine. You too - rest rest rest.
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Wenrisa and Windward....I was so scared of the chemo that I got sick in the parking lot before I ever got into the cancer center for my first treatment! After it was over, I realized just how silly that was! I didn't have any major problems after the first one and soon discovered that if I was going to experience any side effects, they usually arrived on the third or fourth day after the infusion and didn't last long. Sometimes it was just a bit of nausea....which I treated with Brach's lemon drops....and somtimes I was just really tired and a little achy. You will both do just fine and will soon learn what to do to counteract any side effects that might pop up. Just listen to your body and rest when you need to rest! Hugs to both of you. Please keep us updated.
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thank you ritajean! I was so worried but so far about 24 hrs in and I'm still doing pretty good. Just resting and kinda waiting for something to happen but hoping and praying it doesn't!
The support and advice on this board has been amazing! I'm really glad I found you all! Thanks for your guidance and I wish all the best of health now and always!
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so first treatment was Thursday and it's now Saturday. Having diarrhea and some nausea today... This is really what I was hoping wouldn't happen. How do you manage through these side effects
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Hi Wenrisa! Sorry to hear you are having side effects today. My anti nausea medication went on through 3 days after the treatment so I did not have nausea on day 2. If you have more anti nausea medication, take it today. If not, call your onc's office and ask for a prescription to be called in at once. There is no need for you to suffer. For diahrrea, why not take an Imodium? And treat yourself to some yoghurt or whatever you'd usually use to settle your stomach. It does get better so don't be discouraged. Hugs. Mandy1313
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Wenrisa, FYI, Zofran caused me to have constipation, so you may want to try Zofran without immodium and see what happens. But I may be too late in posting.
Hope you're feeling better!
Sue
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Wenrisa - sorry to hear you are suffering from nausea and diarrhea. Even though I took Zofran and Compazine if needed, I still felt slightly nauseous from Friday evening until Monday. Hoping that you will turn the corner soon.
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thank you everyone! I was taking the Zofran and Compazine as reccomended. Still had pretty bad nausea. The diarrhea was controlled with Imodium. I called the office and then suggested next time we use the patch but since that needs to be approved by insurance they wanted me to try just taking the Ativan for the nausea and that probably helped the most. I think I've come out the other side now. Feeling well enough to eat little things now. Thank you all for your suggestions and support
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Wenrisa - glad you are starting to feel a bit better. You are on the other side now! It should continue to get better until the next treatment. Trust me, you and your physician will find the combination that works best!
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Hi Wenrisa,
I am so sorry you have had such a bad time of it and am glad you are now, hopefully on the other side of the diarrhea and nausea. That is an awful combination. It is amazing the way the same treatment hits different people. You received a lot of great advice,on this Board which I hope will enable you and your MO to find a meds plan that will work better for you, and for you to feel comfortable taking the meds as long as you have any hint of discomfort. I never knew that Ativan was good for nausea, I thought it was a pill people took for anxiety. I hope you have some good help at home with your 8 year old, so that you could just tend to yourself. Speaking of anxiety I recommend you take the Ativan the night before chemo, ( if you did not already) to take the edge off anxiety about how the second infusion will go.
I had first infusion Friday, Dec 4th, and the infusion went well, though I was there longer than you because I am doing Cold Caps to preserve as much of my "aging" hair as possible. Saturday, first day after I felt well and thought, wow, I should go out for a walk and I was surprised to find I felt a bit shaky. In my head I felt good. I went to a big food market and found the crowds and hustling around a bit overwhelming on a sensory level, too much input. So I left and walked slowly home. My problem was the opposite of yours, my normal chronic constipation ( IBS) plus the chemo constipation. I even wished that I had diarrhea! At least that, I believed I could control with Immodium, but after hearing what you went through I am not sure. It took me 2 days of every medium level constipation meds, stool softeners, fiber pills, fiber cereals, Miralax, Milk of Magnesia, and nothing worked. I was getting frantic, because I needed my systems to be working so I could return to work on Tuesday. Today, I took Citrate of Magnesia, ( what I take for colonoscopy) and it finally worked. So next time I will go directly to the citrate, but even with the constipation and anxiety, I felt stronger and more my normal self today. And now I know that what I felt over the weekend was a reaction to the chemo. I wasn't sure if I was just making too big thing out of being tired. Seems like one sometimes has to feel better to realize how bad one was feeling.
Let us know how you are doing.
Windward
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windward - I am doing much better today thank you! I actually have IBS also but with chronic diarrhea which probably didn't help my situation... I also felt a bit overwhelmed by things my first day or two after treatment. And now I feel like I am experiencing chemo brain already...
When do you go for for next infusion? Are you every 3 weeks or every other week? How did the cold cap experience work for you?
Wishing you all the best
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Ladies, I found the second treatment the worst, because I was wondering what new SE's I may encounter. But, as many have said, your first infusion SE's are pretty much what to expect going forward. So now you know what to expect, and what meds you want to have ready.
Hope that helps you to get through the rest of your infusions. How many do you have? 4? 6? I had 6.....
Sue
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SueH58 -
That's good to know that at least know we know what to expect. I will certainly work on better anti-nausea meds! I will have 8 treatments total on an every other week schedule..
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first 3 were worst for me, needed to find right combo of drugs to help. Hang strong to our new friends.the anxiety probably makes it all worse. I had issues with xonstipation and stayed on colace/sennnecot forr the whole 5 months. Just try to keep the 3-4 days post treatment as easy as possible catch u on tv, movies and sleep
A
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Hi Wenrisa,
I am getting CMF every 3 weeks, for 4 infusions. Probably a much less intensive protocol because I am much older than you and my tumor was a bit smaller. I am curious about the decision to infuse every two weeks, vs every 3 weeks. Was that discussed with you?
I have just discovered ginger tea!! It is so soothing to the agitated and recovering gut. The tea bags are very expensive,if you are going to have many cups lf this tea, so I bought a bottle of ginger capsules at the heath food store, and I open the capsule and pour the powder into a cup with hot water and whatever sweetner you use, and it is lovely. The hard part is opening the capsule. I make a small slit in it with serrated knife, crack it in two ( over a dish as some powder will fall out) and it's done. Maybe you would have figured out how to do this instantly, it took me several, messy tries.
From the experience of everyone I know, I doubt you have chemo brain, at least not yet. I wondered also over that first weekend, but I see now it was fatigue and anxiety about getting my body systems under control. I think you are understandably anxious, with all the wonderful and reassuring advice and support and coaching available on the remarkable Board. You still have in your mind , and body memory, the distress of your first round of chemo. You and your MO will find a plan that works for you, and the SE of infusions will become less awful, and you will not have to anticipate the kind the aftermath you had from the first time. In the meantime, and throughtout this period are you taking anything for anxiety? A two week turn around is tough, no matter what.
My next infusion is Dec. 24. I am hoping to be able to be at Xmas, 45 minutes drive away, and have decided that if I am tired and feeling a bit spacey I will ask them to have someone pick me us up and deliver us, ( I am the driver in family as my husband's arthitis prevents him from turning his neck from side to side). Asking for someone to go way out of their way to do this for me, a very self-sufficient person, is something I decided I could do. I think of it as a one year "get out of jail free" the cancer card!!
The cold cap experience was not as bad as I expected. Hired a professional cold cap helper, and she knows how to do everything.. I leave it all to her. It is very expensive, but though CMF usually causes " only" thinning, having read that some people have significant loss, and since changing my look is not an emotional option for me, decided to do whatever it takes.
Take it easy, and take good care of yourself.
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hey Windward -
My sister bought me some ginger tea! Guess I'll try it for the next time. I've been feeling well since this two bad days. My "chemo brain" is more of an inability to focus I think. Maybe it's just all in my head, who knows.
As for treatments... Based on my age and pathology report results I was given the option of every other week with CMF for 8 total treatments or every 3 weeks of TC for 4 total treatments. I chose the CMF as it is supposed to be better tolerated and being that I have an 8 year old I'm trying to have as little impact to her schedule as possible... That's really why I chose it but now I'm glad I did cuz I don't know if I could have handled something rougher.
I hope the cold cap situation stats positive for you! The possibility of losing my hair was the one thing I want too upset about. I'm not all that attached to it. Ive tried to grow it but get annoyed at a certain point and cut it off anyway! I may even just cut it really short for the heck of it anyway. But I hope you don't lose a strand of yours! I'd give up mine for your 100% guarantee if I could!
Best wishes to you
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Hi Windward and Wenrisa!
Well you are both over the hump and should start to feel better now until the next TX. I found that I had most of my hair thinning after the 4th TX so you will be finished with the treatments by then Windward. Still I never needed a wig or even a scarf to cover my hair.
I hope that you have had a good day and are starting to rebound.
Hugs to all
Mandy1313
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HI All,
I just realized there are two parts to this chemo journey. One, how one tolerates and deals with the infusion and the days after. The second part is my rather delayed awareness that the chemo, once in my body is very involved with my blood, and all the cells in all my organs. That it is very busily doing it's job. And, that it is according to my MO, lowering my White Blood Count. Which , I found out means I should not have a painful tooth pulled until chemo is over, because of the low white blood count. Did anyone have dental surgery during chemo?
Question, have you been concerned about infections:? Did/do you avoid public activities etc? Movies? Parties? etc? How to defend against exposure to "germs" without getting crazy?
Best to all,
Windward
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windward - I have no advice really since I'm also at the start of my journey... But my nurse did tell me that I should be wary of any cuts since not only can chemo lower your white blood count but also your platelets which are what allow your blood to clot... I that case I would be concerned about surgery. Hopefully there is something else they can do about your tooth!
My daughter and husband were both sick when I went through my first chemo treatment last week. I really couldn't stay away from them totally being in the same house and all but I just tried to avoid as much exposure as possible. But I haven't stopped going to public places or anything. I had blood work done today and they said the neulasta shot worked because my counts were very good.
Hopefully someone who has been through this already can give you some advice. Best wishes
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HI Wenrisa,
Thanks for the very useful information about WBC and platelets. My MO said that if my platelets were low there is something she can give me that will give them to boost them or WBC if I need to have oral surgery.
It is interesting that your MO has you on Nuelasta from the get go, rather than seeing if you will need it. Actually, I just looked it up and found out it is usually given to chemo patients as part of the regimen. So will ask my MO about it,
It is good to hear that your counts are good, and that so far you have been spared getting whatever your husband and daughter had.
Will wait to hear from others about infections or lack of infections and need for precautions, if any.
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Windward, I tried to maintain as much of my regular routine and schedule as possible I bowled, went to events, played bunco with my bunco group and did just fine. You cannot avoid germs. I did not go to buffets to eat since so many different people prepare the food and so many different people breathe on it as they go through the line, but I did do most of my usual activities. I did stay away from friends who were sick, but most of my friends knew that they shouldn't be around me and were very considerate. I also tried to wash my hands much more often than usual. Just use common sense and you'll do just fine. Our moods and attitudes are so important during this journey and you could get very depressed if you build a wall around yourself the entire time that you are doing chemo.
Hugs to you!
Rita
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Thanks Rita,
Everything you say makes sense, and I am glad to hear that common sense precautions should work fine.I would hate to have my life defined by phobic avoidance of activities of daily life. Have bought a whole bunch of pocket size Purell bottles,,and keep them in different pockets to use periodically as needed. That should do it.
Havd this need to try to anticipate what might happen and plan for it, and I only have had one of 4 infusions so far, but I want them all to be able to come off as scheduled! No postponement due to... whatevers..
Windward
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Just wanted to put in a word if nausea gets to the point that you can't keep anything down, including the campozine pill. It also comes in suppositories. That way you can bypass the nausea. They worked the best for me.
Be sure to wash all the fruits and vegetables especially melons before you cut into them. My Doc also recommended not to eat any off the sprouts like alfalfa. They have fungi in them. He also said no digging in the earth outdoors. Of course, stay far away from anyone who is sick or been exposed to something.
Good luck ladies. I did it 15 years ago.
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oh one last word of caution. Don'tswim in any public pools. Chlorine doesn't kill all the bad stuff and with a weakened immune system you can catch a number of things. I did, so I speak from experience.
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Hi SoCal....great to see a post from you as always! You had some great suggestions for Windward.
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