Anyone on just Taxotere and Cytoxan?
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Hi ladies. Just checking in. Day 5 today. This round is similar but also different. I wish I'd have kept a daily log last time because it would be helpful to compare. I know it was a bit of a roller coaster and I know I had certain side effects but don't really remember what started when. I'm writing it all down this time.
Overall, I'm doing pretty well. Managing side effects with various things. I've had nausea, shortness of breath, a very yucky tasting mouth (and getting mouth sores now), and a heavy feeling in my legs that is hard to explain. And fatigue, of course. I've also had bloating in my belly and I have gained 3 pounds which just can't be from what I've eaten. So I'm guessing I'm holding some fluid or something. I had a slow morning yesterday but by mid afternoon I actually felt pretty good and did a few things around the house. Ended up with over 10.000 steps on my fitbit so I thought that was a win! Haven't really had the bone pain yet. I do distinctly remember Day 6 was bad for that last time (I also developed a low grade fever that day) so I'm crossing my fingers.
Suzy, good to know I'm not the only one who's had breathing issues. With covid flying around, it's a bit unnerving! It seems worse after I eat and my tummy is full. Probably because of my bloated belly. I hope you start feeling better soon. For me, I really turned the corner on Day 9. But we are all different, of course.
KeepingCalm, I believe the bone pain was one of the later side effects for me and hung on a little longer than the other ones. I tried not to take it often, but when it was really keeping me from functioning, I took Tylenol and it was like a miracle. Might be worth a try. I don't know how you do this with kids. But then again, I also understand that you don't have a choice. I have 5 kids (all grown now) and was always sicker than a dog from about 6-12 weeks of pregnancy. It was awful. I don't know how I got through that either. But we are women, and we are strong, and we just do what we have to do! I'm going to guess you will be feeling better very soon. I sure hope so! Let us know how you're doing! And yes, I think for most people, the side effects do go away and you get at least 7-10 days of feeling pretty normal before you have to start all over.
Sherri, thinking of you today! Hope all goes well. Let us know how you're doing!
Nan, coconut oil is amazing! I use it for everything! I laughed at your comment about diarrhea. I've had more of the opposite problem, but yes, talking about my bowel function is not a regular habit. Lol. But it has been lately!
I really appreciate our little group here and being able to share our experiences with others going through similar things. It helps!
Patti
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HI All,
Nan, Thank you for making me laugh this morning. Talking so openly about our BMs sure brings this all into perspective. The best part about this forum is the opportunity to openly share the good and the bad. And a little levity sure doesn't hurt. I would rather laugh about all this than cry.
Patti, I also had planned to keep a log but did a poor job of it. I just didn't have the energy for anything. I logged the first few days, and am now trying to log where I am and all the symptoms from the last few days I can remember. My doc told me I would possibly gain a few pounds from the steroids. They cause water retention. I have actually lost a few. Until a few days ago I also had the distended belly. But that seems to have gone down. I think drinking tons of water helps. I have been trying to get 80 ounces down each day.
How do each of you count your days? I am counting the injection day as day 1. I would like to make sure I am doing it the same as you all. So we are comparing apples to apples. So, today would be day 9 for me. I woke up and feel a big difference today. It is so nice. Clearer head. Fatigue is lighter. Have not yet felt the need for a acetometaphin. I have been taking them regularly. I do have one new symptom. That is numb lips. Not completely numb, but weird. I have an appointment with my oncologist in a few hours and will ask her. Also my lips are very dry. I am constantly putting balm on them. Today she is checking my blood levels. When I had my Neulasta shot it errored out when it was almost done. So if my white count is to low they are going to give me more Neulasta. I am praying I don't have to have more of that. Ugh!
Have a good day all.
XO
Suzy0 -
For those of you still undergoing treatment, I hope you feel better and better each day!
For those of you who have finished TC, did any of you have the extreme muscle fatigue in your legs? I feel like I have a myriad of side effects but one that is really bothersome is how weak my legs are. I was in pretty decent shape before treatment but now, I go out to try and play tennis and it feels like I'm a newborn giraffe, trying to learn how to operate a set of legs! I fell over on Wednesday - my legs just gave out from under me as I tried to back peddle quickly. It was a graceful fall (LOL) and I wasn't hurt but I just hate the feeling. Just wondering how long the SE may last. I am still easily winded too.
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Hi everyone,
Sorry to have been MIA.
Oh Suzy, I hope you don't need more Neulasta! I too have very dry almost numb lips and my tastebuds are super dulled. Let me know what you doctor says about the lips.
I'm also on Day 9 (my hospital counts infusion day as Day 1) and I largely feel okay. I have occasional bone twinges but nothing significant. However, I've had a persistent moderate headache and sinus pressure since the morning after the Neulasta injection. I was finally able to have a phone call with my doctor today and also talked to my PCP and MO says she doesn't really know but isn't too concerned. PCP doesn't think it's a sinus infection giving the timing of it and not fever. I tend to agree as much as I was hoping that maybe some antibiotics would just wipe it out! At the same time, it's a little bit frustrating because ibuprofen doesn't necessarily completely relieve it and I'd really rather not take pills in an ongoing way. MO said it really could be anything in terms of reaction to chemo itself, maybe neulasta, or even dexamethasone. She emphasized hydration and not sticking to just water - making sure I'm getting enough electrolytes. We'll see how I do going into next week and then comparing week 3. She said we could try without the neulasta next time but of course at the same time I don't want to do anything to potentially delay future infusions - I just want to get them done! And I won't have any blood work until just before Cycle 2 but it will be interesting to see if there's anything off that might account for this.
pjb61 Thank you so much for the encouragement! Doing this with kids and the fact that they're home from school at times feels particularly insane - like was breast cancer not enough, I had to also do it during a pandemic and home schooling?! But all in all we're managing well. If I could kick this headache I'd say I'd be doing just fine. Not rested, but fine!
Hope everyone is doing well.
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Hi all,
My oncologist visit went well. My blood work was really good. All my counts are very strong. Whew! Doc said in the old days they would have stopped giving me the Neulasta because I am in normal numbers. But they don't do that any longer. Because it is so helpful. But at least I didn't have to get an extra dose. I am feeling so much better today. I am looking forward to feeling better and better until my next infusion May 28. I ask her about the numb mouth and she said that is not a usual spot for nueropathy. She thinks maybe an electrolyte imbalance? She tested me for that and will let me know.
I asked her if I now should expect the same thing going forward. Same amount of sickness etc. Or will it get worse each time. She said it should be close to the same each round. She said to some people it feels easier because now they know what to expect. I liked that answer.
KeepingCalm, maybe the electrolyte imbalance is effecting your headaches? I think you should not be afraid to lean on acetaminophen. As long as you are not exceeding the daily dose and your doc says it is OK. I know how you feel in wanting to limit how many drugs we are piling up.
Cricketdog, I am only early in this. But I am curious how far out post your final infusion are you? I am sorry to hear you are having trouble.
XO
Suzy0 -
Hello ladies, I had my third round of TC yesterday. Three down; one more to go. I can see some light at the end of the tunnel. I'm doing okay so far. Just took my morning, day-after steroids. They should kick in soon and then I'll have some energy. I'm tired from being up peeing last night. I drank a lot of water when I get home from the treatment but it doesn't flow per usual. It's like it gets retained for hours and starts to release in the night. The nurse is coming at 5:00 pm to give me my Neulasta shot so I'll be popping my Claritin shortly. We don't seem to have the fancy shots that go off automatically where I live or at least it's never been mentioned to me.
Patti - a daily log would be very useful. I was actually reminded a lot about my SE's and how I was feeling when I went back and re-read some posts I did on this thread back in late 2009/early 2010. Things I had completely forgotten and my own tips I hadn't followed this time. The struggle is real. LOL Regarding weight gain, I also think it's fluid retention. I've been walking a lot and eating well but I've managed to add some extra pounds too. Now isn't the time to try losing weight either from anything I've read so I guess I'll just keep on keeping on as is and exercise and eat right and take action when chemo is done.
Susy - so glad to hear your blood counts are good. My oncologist always prescribes Neulasta for each round and he also did so 10 years ago when I did it too but I don't think all of them did this regularly back then because the shot was so expensive and I remember many women in my local breast cancer support group getting the daily Nuprogen shots if they didn't have private insurance for prescriptions. I count using infusion as Day 1.
KeepingCalm - good to hear from you checking in again. I find the Cytoxan causes me sinus issues. I have to have the drip run slower and have been faithfully doing a nasal rinse with little saline packets that get added to distilled water. I didn't do this for the first round and had very sore ears with sinus pressure and jaw pain so I make sure I wear my night guard now too. I'm going to heed the advice you shared about electrolytes. I'm drinking a lot of water and am getting concerned mine could get out of whack. Do you use Gatorade or something medical?
Cricketdog - have you talked to your doctor about your legs? I know it does take a while to get back to normal. I didn't have any leg issues when I did the regimen before but I do remember being very fatigued with twitching eyes for awhile after. I had radiation after chemo, which I think compounds the fatigue. Try not to push yourself too much but short walks and elevating your leg may help too . Do talk to your doctor to be sure. I hope you feel better!
Hope you all have minimal SE's and can enjoy the day! Take care.
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Hi all,
Sugar, 3 down and 1 to go...Yay you! Good luck in these upcoming rough days. I see you are in Canada. I had to look when you said the nurse was stopping by your home to give you your shot. That is nice. Would not happen here in the states. My grandson was born in Canada. I remember the nurses coming by and seeing my DIL while she was in labor. Also a doula who would come and massage her. I thought that was amazing care. That is probably why we need the auto shots here.
I am doing pretty good. Day 10. I went for a 2 mile walk this morning. That felt great, but no energy left. So I am in my lounge chair for the rest of the day I think. I will also cook something easy, which I miss. My husband does not cook, so when I feel bad, it is take out time.
I hope you all are well.
Suzy
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Hey Sugar - Congratulations! you are more than half way through now! You go girl
I hope you have an nice easy time through this coming week and by next weekend, you're feeling great again!My hospital counts the infusion day as Day 1, so I'm now on Day #13 and feel great other than a stuffy nose and a cold sore on my lip that I've subdued with tea tree oil. I'm thrilled with this little vacation time from chemo SEs and have been doing a lot of stuff around the house, dyeing yarn, weaving, baking (OMG please make me stop!), and talking to my friends on FaceTime. I have another week and 2 days before the next infusion, which is the day after Memorial Day.
Thank you to everyone for all of the information. It's a miracle to have this resource.
Xoxo
Nan
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Sugar 77, thanks so much for your feedback on your experience with Cytoxan. I wonder if that may have been at play. Fortunately, miraculously, just when I had about had it I seem to have turned a corner today with the headache and was otherwise feeling well so all good news! I also started drinking other things like juice and G2 (the low sugar Gatorade) besides initially focusing on water. My PCP suggested alternating water with some other beverage. MO said tea also falls into the category of water but anything else including milk is good. MO did say if I was going to drink water to do so with salty crackers to make sure I wasn’t essentially diluting myself - funny - never really thought if it that way. I also had cut out my usual unsweetened ice tea around the time of my diagnosis and the last two days added it back in thinking maybe the caffeine would help my headache (I remember Excedrin has some caffeine in it I think) and one way or another the headache has dissipated!
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Hi All,
Nan, glad you are feeling so good. I agree and am needing this time off to refuel before the next round. I am day 11. I am looking forward to getting in some stronger exercise in over the next 11 days, and this time I will make some food to freeze. I usually love very flavorful and spicy foods. Now, I only want bland. My favorite tastes, parmesan and garlic, are offensive to me the last week. Now I know what is easiest to eat. Mostly soup, bread, and ice cream I think.
KeepingCalm, so happy to hear those headaches have faded. What a relief! And next round you will go into it doing the right things to help fend them off.
Sugar, hang in there!
-Suzy
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Sugar77 - thank you for your feedback. My legs are slowly getting better. I think today is the first day I've awakened and not had the horrible burning sensation in my muscles. I played tennis last night and I think the key is to keep exercising and forcing my muscles to work like they should. I see my MO tomorrow and will mention it to him again. He told me last time it's just part of the chemo but it looks like a small percentage of patients experience a more extreme version of the condition. The water retention in my legs and ankles appears to be subsiding as well. I hope your treatment and everyone else's is going well!!
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Hi everyone,
Doing well this week which is nice and helps me to be more optimistic about my 2nd infusion a week from today. In fact I now see why my MO describes this regimen as pretty manageable and I’ve been running around (figuratively) homeschooling, taking my kids for walks etc and being pretty productive with house to dos - my husband and I like the outer order inner calm approach to life - control what we can control!
Cricketdog, so impressed you played tennis! I have been walking outside and on our treadmill. However I occasionally have the sensation when I’m walking up our stairs that my leg is going to give out - like chemo induced muscle weakness. I could easily see if one was much older going through this how falls happen.
Interestingly, I seem to have some taste back this week whereas last week I felt like I couldn’t taste anything!
Meanwhile, my hair is on the verge of falling out. As some have said my head is sore, sometimes a bit tingly and if I run my hands through it it’s definitely coming out. Was hoping to wait until the end of the work week before cutting it but not sure if it will make it. My husband has been super supportive saying he thinks I’ll look good and of course that it should be temporary but I’m momentarily a bit anxious about it.
All in all though doing just fine and not missing anything as we’re still under stay at home directives in my area in Maryland.
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Hi ladies. Sorry, I was absent while I was in the thick of it. But happily, I turned a corner yesterday on Day 10. Still have a yucky taste in my mouth and some skin issues, but those are just bothersome and not really debilitating. I'm definitely looking forward to feeling more normal for a while!
Sherri, hope you are holding up. You are probably in the middle of the worst right now. But once you are through this you only have one more round to go! Woohoo!
Suzee, enjoy the good days and eating home-cooked food. I'm with you...much preferred!
Nan, same thing! Enjoy the good days! It's so nice to have the break before starting over!
KeepingCalm, very happy to hear things are improving for you. I hope they continue! For me, on Day 12 I started noticing hairs appearing in places they didn't usually appear (on the bathroom counter when I wasn't doing my hair, on my desk when I sat at it, etc.) and by Day 13, when I went to use a straightener, I had tons of hair coming out with each pass of the straightener. It was literally hanging from it! I knew it was time. My husband buzzed my head that afternoon with all of my kids and grandkids watching on facetime. We turned it into a fun family event and had lots of laughter! Once it's done, it's not so bad.
CricketDog, glad you are doing better, too. It just takes time to recover from all of this. It really is quite an assault on our bodies.
Hope everyone is doing well! I look forward to hearing from all of you!
Patti
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Patti - yes, I'm in the thick of the worst days. Monday and Tuesday were worse but today is when I move through the continuum and need something for diarrhea. I decided to try Pesto Bismal this round instead of Imodium. We shall see how that does. I'm itching to get out and buy some hanging baskets for my porch and flowers for my porch urns. My daughter and I are going to go this afternoon once the Pepto kicks in. Let's see what we can find. We are also going to get some Poutine. Probably not the best for my stomach or for overall nutrition but I have a hankering for it today. For those of you who aren't familiar with this Canadian dish, Google "Poutine" and you'll know what I'm talking about.
I'll circle back and respond more broadly to everyone when I feel a bit better. Hope everyone is having a good week!
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Hi All,
Cricketdog, glad you are starting to feel some relief in your legs. I hope it continues in that direction.
KeepingCalm, enjoy these good days with your family. You and I are on the same timeline and I have been feeling good this week too. It is such a relief. I dread starting again on the 28th, but I also want to get it over with. So, conflicting feelings about it all.
Patti, I love your story about how you cut your hair. How wonderful. You are probably making it all less scary for your children and grandchildren by including them.
Sugar, I googled Poutine. Ha ha! Definitely looks like a "comfort food". I had never heard of it. But I only wanted comfort food while I was sick. For me, peanut butter and jelly sandwiches. I have gone through a few jars of peanut butter. When I was little, my Mom made me PB&J every day for lunch. It was my favorite. It is funny how we crave that thing from our childhood that brought us comfort. I hope you are OK and getting everything you need during this round. One more to go for you. Light at the end of the tunnel!
I am feeling good and plan to go get the ingredients for some homemade chicken soup and biscuits today. I will cook and freeze individual portions. I craved this during round 1, but I only craved my own version, so I had none. I didn't want store bought. Now that my taste buds are back I have been eating too much and need to slow down.
Even though I am cold capping, yesterday lots of hair started falling out. I don't know if it is working. They say I still could lose quite a bit of hair. But it was pretty dramatic yesterday. Maybe I will join you all after all with a bald head. I don't think I would recommend the whole cold capping thing.
Have a good day all.
XO
Suzy0 -
Hi everyone,
While I may not be brave enough yet to post a photo here, thought I'd report that I went for it this morning and had my husband shave my head! I definitely had a moment of feeling a pit in my stomach but in the end it's interestingly freeing - nice and cool on this 80 degree day and no maintenance after getting out of the shower! It will be interesting to see how long it takes for it all to fall out from here. I'm sure I will be eager for it to grow back but I think I'll just quickly get used to this and I have a baseball cap with hair that I can wear in a ponytail from Dear Martha which looks remarkably good! My husband has very kindly told me that the new look suits me and my kids thought it was funny (they don't really understand the significance of all of this but that's just as well - as much as I can make this not a kid problem/burden I'd like to).
Like Suzy, of course mixed emotions, but mostly looking forward to doing the second cycle on May 28th and being half way! I had an appt with my MO yesterday and she said she thinks it's possible given the time line that my headaches and sinus pressure were due to the Neulasta. She said she wants to look at my bloodwork this Thursday and if my counts are way beyond what they need to be, consider not doing the Neulasta this round. That sounds good to me but then at the same time may cause a little bit of fear around being more immunocompromised. That said, if the counts are in the normal range or low she'll have me do the Neulasta again and I agree with her I'd rather put up with that than potentially have any of my cycles delayed for low counts.
Hope everyone's doing well. We're fortunate to have nice weather and access to my sister's pool this weekend which is a total godsend with our kids. We'd usually try to get away to the beach but still staying home as much as possible in Maryland.
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Hello all. I start T/C on June 1st. Next step on this journey. Of all the side effects discussed in my chemo education class. the nuerpathy scared me most I purchased the ice socks and gloves. hope they help prevent this.
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CDR_Westchester - welcome to the TC club. I see this is your second bought with breast cancer too. It sucks but this regimen is doable and we are here for you. Hang in there. Regarding neuropathy, this is my second time doing TC (with a decade in between) and I've not had any issues with it or with my nails for that matter. I've faithfully iced during the Taxotere infusion and chomped on ice through it too. I've never had any mouth sores either. I really think the ice helps. Also, putting tea tree oil on your nails regularly also helps.
KeepingCalm - that's interesting about Neulasta and sinuses. I will also ask my oncologist about that. It's my understanding that Cytoxan causes headaches and sinus trouble so I get the infusion done slower because I had an issue once before but that was during the infusion. Each round, I do have lingering sinus problems so maybe it's the shot.
I'm on day #8 and am starting to feel like myself again. My eyes are twitching and driving me nuts but maybe I just need more sleep. My next treatment is on June 5 as long as my blood counts are good. In the meantime, I'm going to enjoy this "feel-good" time
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Thank you Sugar.
I feel better that the ice works. I will be sure to do that. My dr nurse recommended clartin for the nuelasta SEs i will do that too. I keep you all posted 😀. Thank you
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Hi All.
I haven't been here in a few days as I have been feeling good. Now I am psyching up for this Thursday which will be round 2. I have way less anxiety as I feel I know what is coming now.
Sugar, glad you are starting to feel better. You have one more to go, right? Light at the end of the tunnel!
KeepingCalm, way to go on taking control of your hair. Your husband sounds like a sweetie. My hair is falling out like crazy. I would like to shave it off. I emailed the cold cap person yesterday to tell her that it isn't working and she said the cold cap doesn't necessarily keep your hair. It just makes sure it comes back the same. No follicle damage. (I think they have a bit of a false advertising problem)
I need to call her today and find out if I can shave it and wear wigs and scarves. If it is falling out anyway, I don't see why I have to follow those rules. My husband mentioned that he is surprised that with everything I have been through, this is the thing that seems to be effecting me the most. He doesn't understand women and how we feel about our hair.CDR_Westchester, Welcome! I talked to my doctor about Neuropathy and if I should be wearing the cold gloves and socks that everyone talks about here. She does not think it will be an issue. I do chew ice during chemo infusion. Plus I am doing cold cap. But I am skipping the gloves and socks. I hope she is right.
XO
Suzy0 -
Suzy - so glad to hear you are feeling good this week. So am I. I've got this week and up until Friday of next week to enjoy feeling great. Regarding the cold capping, so sorry to hear your hair is falling out. I looked into it 10 years ago but decided to forego. My hair grew back really nicely and I'm hoping it's the same this time too. I wouldn't see an issue of you shaving it but I wouldn't go right to the scalp. Instead, I'd go no shorter than a #3.
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Hi everyone,
Just home from Chemo #2. Fingers crossed it'll be as easy as last time. The next few days probably wont' be all that fun, but I bounced back quickly last time. Do the SEs get worse as the chemo goes on?
Regarding Cold Capping, they don't even do that on Cape Cod as far as I know. I asked about it and got a blank stare. I figured then that it was probably too much of a bother since I was going in alone. But I did buy the ice socks from Amazon with an extra set of ice packs to use on my feet. I have a touch of neuropathy in my right foot and it's starting on my left foot now. I'm hoping the cold will slow it down so I don't stumble and fall over my feet afterwards. My hands have so far been fine. Could be because I'm moving them all the time? Anyway, the nurses were interested in what I was doing with my feet and non-judgmental which is good enough.
Regarding buzzing hair, I used a #4, which was recommended to me by my hair stylist DIL who says whenever she buzzes someone's head for oncology reasons, she always recommends a #4. It's still buzzed, but not so short that the hairs can grow into the scalp. It's getting very think now so you can see my shiny scalp. I wonder if todays treatment will give it the final kiss of death.
Best wishes to everyone and feel good. Give yourselves a high five for all of the hard work and morale boosting we do every day. It's not easy, but ...
Cheers,
Nan
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Hi everyone. Just checking in again. I'm on the better side of this round and trying to enjoy it before I go back again in 5 days! I do think round 2 was a bit easier in terms of side effects. They seemed less severe but maybe lasted a little longer. And I also think I've been more tired this round. Nothing terrible but I wear out easier than before.
I'm curious to know from those who are ahead of me...how much hair do you have left? While I have definitely lost a TON of hair, I still have some level of hair all over my head. Don't get me wrong...it would look awful if I hadn't cut it, but I'm also far from bald. And I don't think I've lost nearly as much with this round as the last time.
CDR_Westchester, welcome to the group. We all have our own individual experiences so you have to do what you are comfortable with. I haven't done anything for my hands and feet and I haven't had any problems yet after 2 rounds. No neuropathy and no nail problems. Hope that continues. I did get a fair amount of mouth sores the first round so I chewed ice while the Taxotere was infusing on round 2. I still had some mouth sores but not as many or as bad. But then again, all of my side effects were less so I don't really know if it was the ice that made the difference or not. Having said that, I'll chew ice again the next time because it's easy enough to do! I go for my 3rd round on June 1 so we will be on the same day!
Suzy, good luck tomorrow! I hope all goes well. My husband used a #4 when he shaved my head and I've been happy with that. It's long enough to not poke my head when I lie down, but short enough that I don't notice hairs all over the place.
Sherri, enjoy the good days! One more round and you will be done! That has to feel good! I have to do radiation after this so I can't get too excited yet. Lol.
KeepingCalm, good luck to you as well tomorrow! You'll have to let us know whether or not you had the Neulasta and, if not, how that impacted how you feel. I thought about asking if I could skip it, but I've also had reservations about that right now with covid-19. It really does suck getting cancer during all of this. So many things we need to worry about that wouldn't be an issue otherwise!
Nan, my doctor said she doesn't usually see side effects getting worse with this particular treatment. So far, that has been accurate for me. She did say that the fatigue seems to get worse for many as they progress though. But I'll take being tired over being nauseous any day! Hope this round goes well for you!
Well, off to do a few more chores. Gotta get them done while I feel like it. Next week won't be as good as this one. Lol. Hang in there, ladies! We will survive!
Patti
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Hi Patti
Still laughing about the hair thing. It's still hanging in there, not very thick and my scalp looks shiny. I wear a cap on my head when I go out for a walk so I don't get a sunburn. The cap has buttons to hold the face mask elastics, so that's an added bonus. I use a lint roller on my head a couple of times a day. Hair still falling out, but as you said, at least it isn't all over the place because it's so short you can't see it.
Chemo #2 went well yesterday. No nasty side effects during treatment. My blood sugar was skyrocketing last night, though. My daughter said, when I walked with her this morning, that if I'd gone to the ER with that number, they would have admitted me. Thankfully it went down and this morning was almost normal. I talked to my PCP today and she's ordering some emergency insulin for when that happens. It's the steroids. My diabetes is normally very under control. But chemo is kicking it pretty hard. Even with walking miles a day and drinking a ton of water. I'm going to go on a mostly protein/veggie diet for the duration. I love bread and carbs but not if I have to give myself insulin shots to eat them - ugh.
Thanks for the note about the side effects. I was wondering how that would work. Last time, I felt I pretty much breezed through it. Yes, I was sick for a few days with flu-like symptoms but once I discovered that Tylenol got rid of that, I was in good shape from day 7 on. The nasty taste in my mouth lasted about 10 days. I felt very lucky and wondered, as a typical New Englander, if I was going to have to pay for it next time. But maybe not. That would be nice. :
I'm glad you're feeling better and definitely enjoy your chemo vacation days. It so helps to know you get those when you're trudging in for your next infusion.
Cheers,
Nan
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Thanks for the hair tips my friends. I am going to order some clippers from Amazon. Can you all recommend a brand? I will have my husband or more likely a friend do it. I will be sure to stick with #4. I am going to go ahead and keep icing even though the hair is going.
Nan, glad you are not having too rough of a time so far. My Oncologist said SEs should be close to the same. She said often it feels easier because you know what is coming and the anxiety of the unknown is gone.
Patti & Sugar, glad you are in the feel good window. What a relief it is.
CDC_Westchester, like Patti, I am chewing on ice chips during first 10-15 of infusion, then I also gargle 3 times a day with warm water with salt and baking soda. I did feel tingles of change trying to happen in my mouth during the first 9 days. But I am doing everything I can to keep the mouth sores at bay.
KeepingCalm, Good luck tomorrow. I will be thinking of you as I sit in my chair playing Nintendo's Animal Crossing with a bunch of ice on my head.
XO
Suzy0 -
Nan - those ice socks look great! My hospital uses freezer packs wrapped in absorbent pads (don't know how else to describe so I've put a picture below). They do the trick but your's make much more of a fashion statement! Sorry to hear your blood sugars are up. Have you always been diabetic or was this recently brought on throughout treatment?
Patti - about the hair....I look like an old man. I have some that hasn't fallen out. It seems the stubborn greys are the ones remaining and they stick up funny. I lost way more hair 10 years ago when I did TC but I was a decade younger with very little grey hair at the time. Since I colour it religiously, I actually didn't realize how much grey I have these days. Yikes! I don't have to do radiation this time but I will have two more surgeries. I need to have a new tissue expander placed on my right side. I ended up with necrosis and had to have emergency surgery to ready myself for chemo. My PS had been treating the necrosis with daily Inadine dressing changes but we didn't have the luxury of time when my Oncotype came back with a score indicating chemo. Then, once my fills are done on both breasts, I'll have exchange surgery. I expect my first upcoming surgery will be in the fall. I see the PS on June 16th.
Suzy - good luck tomorrow! Have fun with Nintendo's Animal Crossing. I've been playing Candy Crush since 2013. It's a great time waster so I usually play a few games when my hands aren't on ice.
We are under a heat advisory in Toronto. Yesterday, I went for a long walk at 11:00 a.m. Not sure what I was thinking because it was so hot I thought I was going to die. I almost called my husband to come and pick me up along the way. So, no walks during the day today. I'm reorganizing my spice cupboard instead. Martha Stewart look out!!
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Hi everyone,
Figured I'd post a brief update. (Admittedly mostly copies from my update to the May group). Felt well going into my 2nd of 4 chemos and perhaps as a result of the pre med steroid didn't sleep much so actually rallied to do a little hike on our treadmill this morning before the appointment. I feel fortunate to be able to be halfway and realize that others have a longer course. All went smoothly and I managed to ice my hands and feet successfully although am a bit envious of centers that seem to provide more help with this! Nan, your feet look great! I followed the video someone so helpfully posted using the cryofreeze (name?) ice packs and they worked really well.
My head is another story - I look like a molting animal - but can laugh about it and makes for a very short morning routine and much less overheating in warm weather which is great! Sugar, my hair also had a shocking amount of gray/brown under my blonde highlights except that I’m 39 ... makes me curious what it will come back as!
The doctor decided from my bloodwork that we could try this cycle without Neulasta. I'll be very interested to see how that affects how I feel over the next several days. Of course, it does make me a little nervous about being potentially immunocompromised be we continue to pretty much stay home and certainly our kids aren't going anywhere so I think my exposure is far less than if they were in school. Fingers crossed!
I hope everyone is doing well. Curious whether people have noticed a big difference in fatigue cumulatively
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Hey Sherri, Those ice packs look like marshmallows
But at least your hospital has something. Mine didn’t so I had to get the socks. I’m not sure if they’ve ever even heard of icing feet, hands and head. They must have, but when I mentioned it, I got a funny look like what kind of weird chick is this so I didn’t pursue it. I just ordered the socks. The diabetes has been around for a while, maybe 6-7 years. So it isn’t anything new. But I’ve had good luck keeping it under control so far with diet, exercise and a little metformin. The steroids, however, are too much for it. I’m thinking I will talk to my MO to find out if there is a real need for them, or is it just in case. If so, I might try going without next time. I’d rather not end up in the ER.
KC - the molting animal comment got me laughing so hard I started coughing water up my nose. It’s so true! Are we destined to look like little old men for the next year or what? So glad for my nurses OR caps. 🎉
Feel good everyone! And hope you all have a good night’s sleep. It’s the best, isn’t it?
Xoxo
Nan
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Glad I made you laugh, Nan. I am finding that using humor to cope with all of this is helpful and that I need to embrace my authentic self as the case may be. I ordered a wig that is coming Monday, but I'm actually not sure how much I may use it! (My insurance is fortunately covering most of it so I figure I may as well have it on hand.) I'm not as keen on scarves as I feel like they just really make me look like look like I'm sick but of course then again maybe I just need to come to more acceptance that that is the case, at least physically even if I feel pretty good. I have however been using my baseball cap that has hair attached to it - was a great match to my previous color, and I think actually looks pretty good, except then again perhaps wearing a baseball cap is also a tip off I'm trying to conceal my head! It's all temporary, right?!
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Hi all,
KeepingCalm, I will be interested to hear how you are going forward without Nulasta. I wonder how much of the SEs come from that.
I went for my Round 2 of 4 infusion yesterday. All went well. I felt weird last night for a bit, but then felt pretty good this morning. Very energized. I think it may have been the steroids. So, I went for a 2 mile walk, got some things done around the house, and then took a nap. Ha ha! The fatigue is starting to set in. I am waiting for my Nulasta to start its injection. Should be starting any time now.
I am also molting! I look like a homeless old man. I have probably lost 60% already. I ordered a wig, but I won't have it until mid June I think. I have a few scarves. I just try and avoid the mirror now. Luckily there are not too many people inviting me to things right now.
Have a nice evening all.
-Suzy
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