CMF Question
Comments
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Laura - focus on the end of treatments hoping to get you through!
I had other SEs during (and after) treatments. I did experience nausea but it was controlled with Zofran and Compazine. I did experience metal mouth and did for some time after. I did experience thinning hair and loss of hair in other body areas - and I was cool with that. Who wants to shave their legs, arm pits or bikini line? I did experience chemopause and still haven't had a period yet. I did experience food and beverage aversions. I now can't stand some of the things that I liked before. I used to LOVE a good Arnie Palmer (sweet tea and lemonade) and now I can't stand the thought of them. I did and still do experience fatigue, but I just deal with it. Sometimes at work instead of eating lunch, I close my door and take a little nap. I start a new job June 1st and don't know that I will be able to do that any longer because I think I won't have an office with a door. Oh well...I will figure something out.
I also had other things happen during treatment that were out of the norm. I developed blood clots and had to go on Warfarin. The catheter in my neck broke and had my port had to be removed. I don't tell you that to scare you but to show you that whatever happens - you can conquer!
Hoping that you have a better day today!
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Normally I AM pretty positive...I think it's just all getting to me right now. I always say it could be worse--always--because nothing has me unable to function.I've already dealt with the hot flashes, etc, due to a hysterectomy in 2009, so no problem there AND I am already on a blood thinner, though I changed from Coumadin to Pradaxa when it came out. I just saw my cardiologist today and we talked about how the Pradaxa is so much easier to deal with on chemo, so that's a plus, too! I have a-fib so I qualified to make the switch when Pradaxa became available.
Right now I'm mostly just dealing with whatever side effects come my way and actually have pretty much made a game out of which side effect will show up today. I haven't missed much work because of the SE's...I just think since I'm tired, and usually have some degree of nausea, and work an 8 hr day most days, that it's all just feeling overwhelming. I know that this too shall pass.
My MO says my problem is that I don't look sick, so people react to me differently and expect more out of me. I think I expect more out of me, too!
Thanks for all the support!
Laura
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Hi guys. I read on another CMF board that #3 is a particularly hard treatment. Anyone else experience that or should I erase it from my "things to worry about" list?
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Sue, don't worry about any one tx. East of us react differently. I don't recall anything about tx3. I do recall that tx 4 was where my hair did a serious shed and made me certain I would lose it--but I did not.
Vanmamma/Laura: I agree with your onc--the problem is that you look healthy so people don't realize how you feel. I remember standing in line at my local Whole Foods check out and feeling that I needed to just sit down. But I had my hair so I elicited no sympathy from anyone except the cashier (who know I was having chemo). It was the only time that I thought it might be better to have lost my hair so that people would realize that I did not feel well.
I tried out just about each of the possible side effects in a random order---some I had only once and some I had more than once. I did control the mouth sores and foot swelling with acupuncture. Juliechicago had private messaged me about her use of acupuncture for side effects and suggested it to me. I found that for me the acupuncture , which I had weekly, made a big difference in my energy level and my other side effects as well. If you anyone has any questions about it, please private message me.
Wishing you gals in treatment all the best. And sending hugs to everyone.
Mandy1313
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Boy am I interested in the answer to that! #3 for me is on the 28th.
What do they say is hard about it?
Laura
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I didn't find #3 any harder than the others. I think it should have been for me because my mother died between my second and third treatment, but it wasn't any different than the others.
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ml143333, many thanks for your reply. This is very helpful. I think we're being fairly realistic about SEs and I'd like to be super-proactive about getting everything thrown into the mix that can protect my mom from nausea etc. Sloan will do a bag of saline before the infusion but I understand not everyone does - ? Yesterday doc at Rutgers (considering getting chemo there 'cos closer to home) said they normally don't add stuff to the infusion unless there is a special reason to, but my mom is so up against it (trying to build a new house and now her lease is up and she will have to move house) she can't afford a 'trial and error' approach. I'd rather get them to stay ahead of any nausea and if she feels fine they can always change it up at subsequent infusions. We expect her to be pretty tired, so she'll just have to rest and conserve her energy.
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Hi Suladog, thanks for your reply. That all sounds doable and confirms what we have already been told. (I say that because my mom is getting suspicious that the docs are minimising the SEs for her benefit, so it's good to see so many people had the experience she is being told to expect, which is more annoying/uncomfortable than debilitating.) I am keen to get whoever is administering the chemo (we're still making that decision) onboard with anything preventative they can dish out. My mom has had such a hard time these last two years I really want this to be made as easy as possible for her.
Thanks again for sharing your experience. :-)
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round 2 tomorrow. Can't say I'm really looking forward to the next few days. But each round over means closet to finished. Sigh....
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#3 for me tomorrow. I'll be halfway! It has been pretty tolerable, but the side effects are getting me down. Nothing horrible, but it's been something every single day right up to now.
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You girls are fightin this fight!!! With each one, its one less- hang in there, we are all behind you
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Hope today goes well for you vanmama. Half-way done!!!! YEA!!!!
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Way to go Vanmama - you got this!
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I almost DIDN'T have this! My WBC and ANC were low, so the nurse had to find my doctor to see if we could go thru with it. Luckily, he said ok. So I got started late, so it was rush hour when I was done.
I got a shot today and have to go back tomorrow for another one.
If the doctor said no, I was going to insist that he come out and tell me that in person!
I'm halfway there !
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ugh! How frustrating. Mine went smoothly. Wbc was excellent and my blood pressure was normal for 1st time since diagnosis in march. Super tired now. Hang in there. We will all get thru this 1 day/step at a time. It's like marathon running. One mile at a time.
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Wow, I can't believe that I blamed myself for all the se's and didn't think that the Cyclophosphamide might be the cause of some of my issues for the last two months. Reading this topic has opened my eyes well and truly.
I had my first CMF in March after undergoing a hip replacement in February; had to wait 4 wks for the wound to thoroughly heal. I only had one treatment because the person who replaced the receptionist, temporarily, didn't make an appointment for me the next week. I didn't question it when I saw the next app't was a month later; I didn't think it was my job to tell them what the CMF protocol should be. The normal receptionist was shocked when I turned up a month later without having completed the last cycle.
In April, the week after the second tx, I had such bad constipation I was scared that I was going to end up with another colostomy bag...which is the one thing I never want to have to go through again. I finally 'downloaded' after nearly a week of drinking water and taking every med I had in my medicine cabinet. I blamed myself for eating solid meat twice in one day which I shouldn't do because I can't digest solid meat any more, only minced meat of any species since having the colostomy reversed three years ago. The colostomy was caused by Diverticulitis not BC, not something I expected to happen at that point in my life.
During all this, I started vomiting like a volcano and none of the anti nausea drugs I had for chemo worked until I was near totally dehydrated. I usually keep a bucket handy with Dettol in water in the bottom so that the smell of the contents of my stomach don't make me wretch even more but DH needs to be told how to do something ten times before he accomplishes the simplest thing so I had to hold my nose as I half filled a 2 litre bucket each time as the smell was like nothing I had ever endured before. I know it's too much info but I was starting to believe that I had cancer of the stomach or something similar.
In May I turned up for my 3rd tx and was asked if I had my file with me. No....of course not....why would I? They've lost my file haven't they? Yep, all my records for the last six years have gone missing...they've searched the whole hospital looking for it....gone! Luckily, the Pharmacy had my treatment regime on a computer and I was able to have my third cycle of meds.
I have been very careful since finishing tx no 2. and, fingers crossed, have not suffered like I did for the 2nd cycle.
I am getting a break now as I'm having my other hip replaced in June and won't start again until July when I will be going to the newest Chemo unit in the southern hemisphere. I hope the system works better there than it has lately as it doesn't fill you with confidence when they can't even organise the paperwork properly. The new unit will have either iPads or tablets to record all the patients details which will go to a central computer as soon as they are entered...let's hope their computers don't crash too often.
Fingers crossed for technology,
Sheila.
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Damn chemo brain, I have had an issue since last tx.... porkers instead of feet! My feet were so swollen last week they looked like I had a pair of pig slippers at the end of my legs which were like two sausages (pork, of course.) I couldn't wear any shoes at all and had to be careful just getting out of bed. Naturally, because it hurt to walk, I had to run to the bathroom every 25 mins. I have never spent so much time on the loo in my life. I even went to see my GP with Crocs on my feet, which I wouldn't normally be seen outside the house in, in case this was something serious like blood clots or DVT.
I went to have my evening shower after posting my last message and while drying my legs I see that my legs are swelling up again, but my feet are still normal. I have also had some nausea but taking the anti meds seems to have worked so far.
Just thought I'd include this as a se of the Cyclo.
Sheila
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Wow Sheila. You have been through alot! I think I would let them know about your swelling legs and feet. Hopefully the new center will be more efficient and able to keep better "tabs" on you. Hang in there.
vanmama....so glad you got to have the treatment! Another one bites the dust! :-)
amy....always good to hear that somebody is coping well with this crap! You have a good attitude....One day at a time! We can do just about anything for ONE day!
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Wow Sheila,
I hate that you're having such a horrible go with this. I was able to tolerate nauseousness with the meds, While I was going through chemo I became friends with another CMF member Robin and she really had a hard time with nauseousness and the meds weren't working for her. Her doctor eventually prescribed her a patch that went on her arm and it helped her tremendously. I'm not sure of the name of it, but I'll ask her to come on and explain. Perhaps that will help.
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aussiesheila. Sent you A private message. Mandy1313
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Went in for my 2nd Neupogen injection today. Got my vitals done (just like yesterday). I said "what would have changed in ONE day?" Well, I lost 3 pounds ( what??? With all that fluid pumped in me???) and my blood pressure was low for me.
The nurse that did the injection had the same name of a nurse my mom always talks about from when my dad was there in 1999 to 2001. Sure enough, the same one and she even remembered my parents. I just don't know how they do that!
So I haven't really noticed any bone pain. Should I be?
Laura
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Hey Van- the shot really made me have no pain, and I trust it will be the same for you!!
Hugs
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Thanks Mandy, I have returned one.
Rita, I did go to my GP about my feet but after ruling out blood clots and Lymphedema, she put it down to chemo as the cause. Needless to say, after being off the Cyclophosphamide tablets for a week, my legs are swelling again.
Sheila
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Hi everyone, I didn't have "pain" from neupogen just a "vibration" in my ribs, to let me know it was working. my bp was always low during cytoxan and I had weight loss , some I think from dehydration, despite all the IVs. I went for extra hydration the day after treatment and that seemed to help. As far as the "countdown" I marked my calendar with 12, 11, 10 etc.. for a good visual, and after each tx I sent text to friends at work 3 more 2 more etc.. and rec'd encouraging responses , all little tricks to get through. Best to everyone.ps.the patch for nausea maybe scopolamine its used for air sickness,
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Imoore4, when your treatments stopped, did the weight stay off?
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having horrible chest pressure and fatigue tpday. took tums them xantac. Only slightly bett r. Called doc on call. Digested eating more, I have had no appetite, and maalox. Not sure if it's bad reflux, which I have never had, or something else. Hopefully this will pass soon.
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I always dreaded the neupogen shots because I had heard such terrible stories about the pain they caused. I was pleasantly surprised to find that I didn't have any pain associated with them.
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I haven't been prescribed neupogen or neulasta as part of my protocol. Did you get these effective with treatment 1, or when the MO could see your blood cells counts were getting too low? I sure hope I can avoid them. Going into round 3 in about 10 days.
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Neulesta was pretty bad for me, neupogen no problem at all!
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Neupogen was really bad for me until I reduced the dose.
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