Starting Chemo in November 2017
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Orangedaisy - I missed you on my list of wonders, but glad you checked in. Sounds like fatigue and diarrhea got the best of you. Maybe next dose will be less traumatising as your body adjusts a little bit. I still can’t see myself going through this at my age. It’s good you had the nausea under control. Hope you have a feel good Thanksgiving!
Last night I stayed up too late and had a slight panic attack as I tried to go to sleep. Got up and took one of those lorazepam pills. It took it a while to relax me, but I felt I couldn’t breathe very well and positioned myself upwards. I’m already tired from stress! Maybe I’ll be so tired after treatment I’ll sleep for days. (Might be like others and set the alarm to stay on top of nausea pills). I think I’ll get some of those new nose tabs that keep your nose open so you can breathe better.
Paulette- what is Nuun? I hope I can feel well enough for a short walk on bad days like you
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I did my first treatment of TC on Monday the 6th via an IV without a port. As soon as the pre meds started, my wrist hurt horribly. I have small veins that roll, my IV ended up being placed in the back of my hand. By the following Monday, the back of my hand and wrist still hurt a lot, and was red and got when I got to my follow up appointment. The MO was concerned it was an infection. I did not get the Nulasta shot in case I did not need it. My WBC was extremely low, so MO wanted me to get antibiotics via IV at the hospital. Long story short, I spent two nights at the hospital, my wrist did not get better. It was not an infection, but chemo leaked through my vein and burned under my skin. The back of my hand is still numb and veins still sore.
Otherwise, I had the typical side effects. I too felt like I had the flu, and morning sickness on Thursday. I was so irritable from the steroids. I am not taking as many doses for round two. I am getting a port on Monday morning before dose 2 of TC. The plan is a total of 4-6 doses depending on how I am able to tolerate the chemo.
My hair is thining, but not ready to buzz it yet.
I was able to get a free wig through the American Cancer Society. Panteen partners with them and sends them the human hair wigs. I did have to go to the actual local office to pick out the wig.
Happy Thanksgiving to everyone.
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Erikag- I had my first ten chemo infusions via IV. I was told that if it hurts, I have to let nurses know immediately in case it leakes under the skin. My oncologist doesn't like chemo IV done near joints, such as back of hand, because leaked chemo can damage joints which are harder to heal. Nurses seem to like putting IV on back of hand. I just tell them it hurts more there, so they have to try it on my arm. I am sorry this happened to you. Hope it hasn't done any damage to your joints.
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Blair...Anxiety is the pits. Try taking the Ativan an hour or so before you plan to go to bed.
Erikag...I am so glad you are getting a port. What happened to you is EXACTLY why my onco insisted on a port. I hope your soreness and numbness is gone quickly.
Glad you were able to pick out a wig. Things will get better...hang in there!Wishing all of you who celebrate...a very HAPPY THANKSGIVING!!
Hope
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rljess, I took Imodium after the diarrhea continued several days. I hate the stuff cause i wind up with constipation, but if it happens next time I will start taking it earlier. It wasn’t go all the time diarrhea. BMs seemed to be on a regular schedule, but watery and painfully gassy. It was 5 days, not 8, but still no fun for that long. I didn’t call them about it, but I did ask yesterday at my weekly visit for blood counts, and they said make sure you are taking a probiotic. I told her I was and that Idoubled it after a few days of diarrhea.
The nurses put a Neulasta pod on me the day of chemo. It injects automatically 27 hours after they put it on, and then I remove it. The doc doesn’t wait for blood counts to go down to see if you need it. She always includes it with TC chemo. I go into the office weeky for them to check my counts. The first week after, my counts were crazy high from the Neulasta, but this 2nd week are back to normal. My platelets were a little low, but not dangerously low.
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Paulette, I should have mentioned I made myself walk everyday when I was feeling bad. It definitely helped clear the brain fog, which I forgot to mention in my post. I met a lady in the waiting room who was getting B12 shots while she is taking lung cancer chemo. I wonder if that would help with the fatigue an de brain fog
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Orangedaisy....I take a daily supplement of sublingual B-12. They are 500 mgs. I take after each meal. I've never experienced the "brain fog" to the extent that some people do. Not sure if I can attribute it to the B-12, but I do think it helps with fatigue.
Hope
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My B12 level was too high when I was taking it along with my other supplements last year (Not DX w BC yet), and my primary said to stop taking it because my blood test showed way too much of it. I can't remember what amount, but I know I get a little in my multi vitamins. Didn't realize you could take too much of it. It didn't do diddity squat for extra energy anyways for me
Nonahope - good idea on the anxiety pills an hour before bed. Last night I went to bed on time and was fine without taking anything, I keep telling myself - it’s mind over body.
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Blair...B-12 is water soluble...so what you don't use, you lose with urination. Your doc probably figured it was a waste of money for you.
Glad you slept well last night. Yes,,,I agree, sometimes it's definitely mind over body.Just finished making a relish tray and a side dish to take to my daughter's. It will be a zoo with 25 plus people -- but, it's always crazy fun.
Hope
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Nonahope - Enjoy the food and family fun! You make me think of the Publix (southern grocery store) commercials around the holidays showing family togetherness. I’m so envious - not enough family lives in same town for gatherings. We all try to take turns making trip
I’m not sure how they measured it in my blood, but the numbers were high, so I gave the B12 up. I do remember a number of 1400 and I think it was only to be around 600. My doctor just said to lay off the B12. Maybe I eat enough foods that contain it - just not sure.
Hope everyone in the middle of their chemo are enjoying their day - if not - relax, be a couch potato all you want and hang in there,
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erika i'm sorry to hear about your wrist. i hope the meds make you feel better soon and yes go for a port still. Before i got my port the nurses reminded me before each chemo to call them if i feel any pain anywhere. (that includes pain in the srrounding area in the meds are still cold from storage and they end up massaging that area as the meds went in in order keep the pathway warm) and also a reminder if i see rashes or feel anything unusual. If i fall asleep i keep my mask off so that when they check every 10-15 mins or so, they will si any visible swelling or allergic reaction.
I wish you a quick recovery and so you can get back on track with your treatment. hugs too
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Hi All - I know a person can take too much VIT D - When I'm low my shins get very sore, but my Dr monitors and when I'm up to speed she takes me off (Rx Vit D) My 86 yr old Mom takes Vit B 12 Shots - she swears by them. (Bless her heart - she has more energy than me!)
When I lived in Florida they had Publix (and 3:00pm - Boom - Thunderstorms like clockwork in the summer) I've had a few panic attacks - where I couldn't breathe. and a few in public. But I finally came to the realization I wasn't going to die, and learned to breathe through it. I had no idea they were panic attacks - so when I described to a friend - she said 'your having a panic attack' I googled it and sure enough - symptoms exactly like I was experiencing. freaky....
I also take ambien to help sleep. Word of warning: The sleep walking is a true and dangerous side effect. I've woken the next day and found I had cooked a meal or cleaned house - and not remembered doing it. So now I take it AFTER I'm in bed - ready to go to sleep. No more sleep walking episodes - or at least I'm finding no evidence.
Just want to add one more thing - A friend of mine dropped a 32oz bottle of shampoo on her foot in the shower - breaking her foot. I immediately changed all my shower stuff to trial size bottles. As clumsy as I am - don't need that on top of everything else!
Adding Probiotics to my list - any particular brand? Hoping everyone had a nice Thanksgiving.
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I will start CMF on 12/5/17. I will have chemo every 3 weeks and do 8 sessions. I’m 65, work full time, and am blessed with kind and supportive friends and family. After chemo ends in May, I’ll start radiation. My oncologist says if I do well and my counts are good she might escalate the treatment to every 2 weeks. I haven’t seen anyone here on CMF and of course I’m interested to hear if anyone will have a similar course of treatment. I’m worried about the side effects. Sometimes reading everything you can get your hands on gives you too much information. I keep hoping my reading and research will lead me to someone who has had a positive experience with CMF tho I know we all respond differently. Good luck to all
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Happy Thanksgiving everyone
I hope everyone enjoys the holiday. My second infusion is monday, and I'm not looking forward to it. Decided to take the first week post infusion off work this time around (and will for the rest of them too) since I was hit so hard with fatigue the first time.
Continuing with cold capping and have only seen minor shedding. Here's hoping I can keep all or most of my locks.
Lots of love to all my survivor sisters.
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Blair2- I am just buy for sure ☺️ Doing well just waiting on my hair to fall out now and hoping round two of chemo is same or better than the first. Thank you for the interest 😘🦃🍁🍽Happy Ths
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Welcome 19501952 - I’m 68 and will start chemo on the 30th. I’ve been one of the very nervous ones in this group, so don’t feel alone. Will need radiation too. My age and heart disease with this ordeal bothers me a lot. Not familiar with CMF, but someone else might be on same cocktail.
Almerz33 - glad you’re feeling better. I was glad you didn’t have any nausea, but I bet you felt like you were hit by a Mack truck for fatigue. What chemo drugs are you on?
Both of you gals are so brave to be working a jo through this. (Of course I know jobs are important to you too). I’ve heard many can manage. I think employers should allow you to rest when needed.
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Hello ladies! I hope everyone has had a good holiday and that the rest of the week/weekend turns out SE free for everyone.
Blair, you're definitely not the alone in being very nervous. I think this entire club we're in is pretty good about being nervous for so many reasons.
I do not want to take steroids any more. I think I can weather the chemo stuff but I am really tired of the side effects from the steroids from the premeds. They make me so irritable and agitated. Every little thing makes me want to either crawl back under the covers or start yelling. I'm finally starting to feel like normal and this week was half the dose of last week.
I think the only thing that has really helped me the past couple of days is getting out and walking. It even got me through dinner with my in laws. Usually wine does that but that's off the menu lately so it's another walk for momma!
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Rljess - still no chemo date, but my echocardiogram is Wednesday, and I have the steroids ready to go. Should be soon. Port still bothers me, and it's been 3 weeks. Trying to give my brain lots of breaks from thinking about all this. Distraction is good
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Maggieanne- Good to hear you’re hanging in there! I was playing with some of my scarves in the last few days - imagining myself bald. It is depressing. One thing that helps is to watch the girls on YouTube who show you how to tie scarves, bandanas, and make bands out of old t-shirts. One thing you young girls have are beautiful faces. Every young girl I have seen in those videos actually look cute with their bald heads! If you’re lucky to have good bone structure in the face - then some older ones look good, but I have a flat chin, squirrel pouch dangling under it, and a round face with wrinkles. Ugh!
Frozentoes - maybe get one of those boxing blow up dudes and beat the crap out of it!
Meowmmy65 - Hope your port eventually settles down. It has to bug you that your chemo date isn’t set yet, but best to let the port heal a while. We’re with you here - keep us posted
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rljes - I hate pain too. I put the Emla cream on a little over an hour before my appointment. Based on recommendations, I cover it with saran wrap and tape it up with first aid tape, making sure a big glob of cream covers the whole bump- easily a quarter size. The wrap doesn't come off until the nurse is ready to access the port. All I feel is a small pressure of the needle going in - maybe a slight prick. I believe that my port is placed lower under the skin than some because my BS prefers to slide it under a layer of fat whereas most are just under the skin. Don't know if that means more need for longer coverage of Emla, but even those of you who have it just under the skin could do the same saran wrap treatment.
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I ordered pashmina scarves from wrapunzel.com. they have wonderful tutorials for how to wrap your head. Right now everything is 30% off. So if anyone needs scarves, or ideas for how to wear them, you might want to check them out.
My first time playing around with head wrapping wasn't bad. Much better than the wigs I tried on!
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Blair2:
I sure did feel like I got hit by a truck, but not only because of the fatigue. The "chemo fog" was terrible. I felt like the world was just moving a million miles an hour and I was stuck in place. It was such a strange feeling. I'm really not looking forward to going through it three more times. I'm looking forward to my reward of a trip to California in May for myself (just by myself!). After all this, I deserve a little respite and time away from my cancer journey.
The drugs I am using are T and C (I am doing my best not to learn all these names so that I don't stay up at night fretting over it). My next infusion is on Monday. Boo!
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rljes...One night of sleepwalking would make me throw away those Ambien!
1050-1952...I'm not aware of your cocktail. Hope someone can help you out with answers.
Aymerz...How long do you wear the cold cap? Hope your infusion on Monday goes well.
Blair...I was retired when I was first diagnosed with BC. There was no way that I could have worked while going through chemo. I did have a friend who was triple negative and she managed to work throughout her treatment.
Frozentoes...I guess the steroids don't bother me. I feel like they make me more alert, but not agitated.
Meowmmy... I'm surprised you still have pain from your port. Wow! Cute picture of you. You did a great job with the scarf.
Voilalia....I did the saran wrap thing, too, with my initial diagnosis. I always had to wait so long in the office, that I would put it on as soon as I got there. I don't use anything this time around.
Question about the probiotics -- is it to help with diarrhea? Constipation? Or both??
Hope
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nonahope: I wear the cold cap for an hour prior to infusion, during the entire infusion and then for 3 hours afterwards. It's quite an ordeal, but so far, I've only seen a bit of shedding in the last couple of days. I'm hoping the shedding chills out - but so far I've retained my hair.
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Aymerz33- if I get as weak as it sounds with you (taking exact same drugs), I will probably pass out. Yikes - I’m already tired. Do you feel it’s like having a bad flu, or different? Maybe your system will be stronger against it Monday.. I believe some people have said the second dose wasn’t as bad as the first in the August group. Look at it as being half through by Monday! It’s good the cold cap is working at least.
Nonahope - I’m glad I’m retired, but I thought retirement was suppose to be fun, not dealing with unexpected health issues.
Meowmmy65- love that teal color you’re wearing. You look great - with class too! Thanks for the scarf link.
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Hey friends,
I hope you all had a good Thanksgiving!
I feel so much better. My first round of TC was November 15th and days 3-6 were hard. But, hallelujah, a couple days after that and I'm feeling somewhat "normal" again. :-)
Praying for you pink sisters!
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Meowmmy65 - I like the scarf too but I really love your glasses! Super cute.
Blair - I think you're right. I'll have to save that for my next insomnia fueled Amazon shopping spree. I wonder if they even make those guys anymore?
What is the EMLA cream? Is that something that has to be prescribed or can I find it at a pharmacy? The first time they accessed my port it stung but I'm guessing it was because it was still pretty swollen and new. The second infusion didn't hurt at all. Barely a pinch. I'm planning on giving it one more go and if it doesn't hurt again, I'm not going to bother with finding a cream but if it's like with IVs and dependent on the nurse, then I'm going to need some.
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moewmmy, the wrap looks lovely!
i haven't shaved my hair. once the initial shock of hair fall wore off i was able to deal with it and i even walk around the house without a headcover. I wanted to know how much hair will fall off.
but i prefer cotton wraps and scarves and hats for going out. too humid for anything else here! hope, probiotics is just to balance natural gut bacteria sinc antibiotics kill even good bacteria in the gut.
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Frozentoes....When I was using the cream (2010) it was a prescription. I haven't bothered with it this time around. Like you said, a little pinch is all I feel.
mkn...So, the probiotics won't "cause" diarrhea or constipation?
Lizabeth...When you've passed those couple of bad days, you really appreciate those "good" days!
Aymerz...Wow, that's a lot of time wearing that cold cap. I hope it works wonders for you.
Wishing all a pain free day!
Hope
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Meowmmy - You look mar-vou-lous! My port still hurts as well - day #12. Probably because I keep accidently hitting it or brushing against it. I diff know its there. It is still protruding out quite abit. So I know its not the swelling - its the actual port that is sticking out.
I'm trying to spread out my last 3 days (The count down has begun) to get all last minute things done. Nervous doesn't even describe how I feel. Absolute Terrified. My PT advised me to try to meditate. The stress that I'm bringing to myself is harmful and will make symptoms worse.
What Am I Terrified of? I am afraid I'll become so weak and have diarrhea so severe, I won't be able to take care of myself. (I live alone and no one to check up on me) I'm afraid on day 7-10 when I have to come in for lab work - I'll be so weak it will be a danger to drive. (No Uber around here - Senior Van Service you have to make 3 weeks in advance) Soc Services said they would provide rides for scheduled services, but not for spur of the moment things - I would have to call 911.
Whether these fears are real or imagined - Perception is real. My heart is pounding so hard, I feel like I'm going to have a heart attack. I am desperately trying to calm down - I've already had my BMX/ where did I read that one of the posts that they are on a clinical trial - just BMX and Herceptin. No Chemo No Radiation. I could live with that. But its a little late to change.I envy those who had the courage to go directly from BMX to Chemo and not wait Like I Did - or for those who had Chemo first - some could measure your tumor shrinkage. With having BMX first - and a Pet Scan showing zero cancer - its hard to justify having Chemo - FOR ME.
Thanks for having a safe place to vent. No body else outside of here understands. If I hear my brother tell me that "his buddy felt fine and worked all during his chemo" one more time - I'm not going to be responsible for my actions!
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