Starting Chemo in December 2016
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ILSunrise and Scaredashell,
Glad you're both ok now. Enjoy the holidays, rest well and be ready for your next treatments. My 3rd infusion will on Dec. 21 and I hope i wont have severe SEs so i can still enjoy the holiday season.
Good luck to you both and all the other lovely December chemowarriors.
Prayers and positive thoughts for us all.
Gina
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Gina- thanks for the thoughts and good luck to you on your thrid treatment. I am happy to have this group.
Good luck to all.
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Thanks scaredashell.
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ILSunrise and Scaredashell, thanks for asking. This will be my 5th night in the hospital. They can't get my platelets to go up and stay up. The highest they've been so far is 47 but then drop back down the next morning. The steroids (solumedrol) make me feel like a zombie. Can't sleep, agitated, myriad of other side effects. My DIL brought me dinner tonight from a favorite Mediterranean chain, so that was a nice change of pace. The food here is not as healthy as what I would ordinarily eat and that's taking a toll. I have had no exercise in a week now. Haven't been outdoors. Drinking dandelion tea at the moment in an attempt to flush some of the extra fluid buildup from steroids. And of course holidays, so I don't feel like I'm getting the continuity of care that one could expect otherwise. The oncologist on call today told me that any drug can cause ITP. But of course they don't know which one caused mine. This compromises future treatment. As you can tell, I'm pretty discouraged.
PS to all who worry about getting a port. I can't imagine how much worse all of this would be right now if I didn't have the port. While the onc lab didn't use it and my right arm suffered for it, the hospital does everything through the port and so far there's been a LOT of everything. You just never know what chemo is going to do to you, so get the port!
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Hi all! Well I had a good weekend physically. I worked ( 3) 12.5 hour shifts. Scheduled for next treatment on the 21st. Things will be done differently this time so I don't go thru hell again.
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I agree with Bareclaws on the port issue. I really dislike mine, but I have small veins and chemo would be even worse without it.
I'm glad to hear some other people have been recommended the Claritin for bone pain. I wanted to ask because I am going to the Cleveland Clinic and they can be special in both good and bad ways.
I found my second A/C infusion went smoother than my first. They hit me with harder anti-nausea drugs, which seem to be helping.
Whomever commented about the strong hunger (so many posts between now and when I last logged in), I have that issue as well. My anti-nausea med works by emptying the stomach quickly. I find myself needing to eat small meals every two hours. Even in the middle of the night. If I eat too much or not enough my stomach is incredibly unhappy. I find myself eating cereal, scrambled eggs, and green juice to get me through these three-four days after my infusion.
Is anyone else having weird sleep issues? I can get between 4-6 hours and then I'm awake for at least two, then tired again, and can pass out for another three. Normally I am a nine hour a night gal. I've read exercise can help with this, but I don't think I'll be ready to brave the gym for another week yet. I was taking melatonin prior to chemo, but I feel like everything I'm on now is just laughing at it.
Summer2016- good luck on your cold capping! I gave up on mine because I decided I just don't care about my hair (and I imprinted my nausea on them, even seeing the cooler makes me sick). It's short now and I had a mohawk for seven years prior - so many years of mostly bald. But I think cold caps are amazing and wish lots of success for you. I have yet to lose anything and I'm three days out from infusion two. My mother lost all hers on day ten after her first A/C, so even the first cold capping session must have had some level of success with me. My family doctor also wrote me a prescription for the generic version of Latisse (sp?). I'm hoping it will help me keep some eye brows and lashes, but who knows. I use it nightly.
I find everyone's updates helpful and appreciate the amount of mutual sharing. It's good to hear from others how things are going, so thank you all for sharing!
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Hi All, just getting caught up on all the posts. I'm almost 2 weeks out from the first treatment and feeling almost like myself again! The main lingering issues are foods taste bland and water tastes metallic, which is terrible because it makes me not want to drink water and usually I drink a ton of water. I tried lemon in the water, but that just made it take like metallic lemons... ugh, and I tried crystal light or other 0 calorie water flavor things, but I can't stand the fake sugar taste in those. Also, I experienced some hair shedding this weekend, so I had my sister bring over her clippers and just shave my head! I cried a little, but now I'm getting used to it and actually think I look pretty badass. I discovered I have a nice shaped head
I also picked up the wig I ordered on Friday, so I'm wearing that to work today. I'm wearing a hat over it because it's cold in our office and I'm a little self-conscious about the wig, but it's pretty comfortable and I'm getting used to it... I'm not sure yet if I'll always wear the wig to work or not. Everyone in my department knows that I'm going through chemo, but some people in other departments on our floor don't and also I work with the public quite a bit and not that I'm ashamed or embarrassed of the hair loss and what I'm going through, but I don't really want to talk about it and don't like the pity, you know? But I have lots of nice hats/wraps/turbans that I really do like, so maybe I'll switch it up depending on the day... 0 -
Jezikah, I have a hard time with plain water, too. Iced tea (unsweetened) goes down easier and also coconut water, something I would normally not drink. I guess it pays to try lots of different things.
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Positive thoughts your way bareclaws!
CareyShay my appetite has been very demanding. I had my first treatment a week ago and I hope it slows down! I do feel nauseous with an empty stomach so that is definitely part of it.
Jezikah! Your post made me laugh. Good for you shaving your head. I prob have a week left with my hair but I almost feel ready to just get rid of my hair. There has been so much angst and anxiety about going bald that I just want to do it and move forward! Too chicken at the moment though
Water is an issue for me also. I'm trying to drink teas but I'm definitely not equalling the amount of water I normally would drink.
Otherwise I am feeling pretty good. I have some minor bone pain today but it's very manageable.
Good luck to those getting treatments this week! We are getting through this!
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Jezikah, your post was just what I needed to read today. My hair is shedding pretty fast. I am trying to stay positive, but I find myself sad about my hair loss anyway. I have a couple of wigs, but I haven't worn them yet. I have a scarf that I wore to the grocery store yesterday just to help myself get more comfortable with my new look. I am going out to eat with the in-laws on Wednesday so that will be another scarf opportunity. I agree with what you said about pity. Most people know that I am going through treatments but I don't want to be seen as "the cancer patient" all the time either. Julia
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Embrace the bald, ladies!! Maybe because I saw GI Jane when I was in high school during my formative years, but I've always thought a woman with a shaved head was pretty badass and now I have an excuse to do it
When my 4 yr old daughter saw my buzzed head, she just laughed and thought it was hilarious. She said, "what did auntie do to your hair?!" and she wants to look at it and touch my head all the time. She said now I have baby hair like her. She was pretty much bald for her first 2 yrs. She still has baby-fine hair and has never had a hair cut.
I agree Julia, I also don't want the "cancer patient" label to define me. I'm in a male dominated industry and I already have my well-meaning (male) boss and co-workers telling me to take it easy and don't do too much, etc...
Much love to everyone going through hair loss - I did shed some tears and it's definitely ok to grieve the hair but we'll get through this, too. XOXO - Jessica
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CareyShay---it will be interesting to see if I am able to make it through with the cold capping. It's heavy and freezing and a real pain. I see why so many people just shave their heads!----maybe me too!
BearClaws---I hate to hear that you are in the hospital and still struggling......bless your heart! Sending warm wishes and healing thoughts your way for you to feel better soon!
Jezikah----I can relate to the metallic taste. We celebrated my husband's birthday Sat at a very fine restaurant which I felt was a waste on me.....everything tasted metallic and awful! I didn't say anything because I certainly didn't want to ruin the evening....just smiled and picked at my food. It has gotten better today where a few things taste almost normal....well that must mean I am getting closer to my next treatment....yep Dec 29th is around the corner!
Thinking of everyone in our Dec group as well as many others on these boards. Happy Holidays to everyone and blessing to all!
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Hi ladies!
I had my first of six rounds of TCHP chemos yesterday. All went well with the infusions via my forearm port, but it took ages as they were extra careful with the Taxotere. I iced my fingers and toes and sucked on ice cubes during Taxotere and Carboplatin infusions to avoid neuropathy and loss of taste (this worked well during my AC+T chemo a few years ago). As we were running out of time I got Herceptin subcutaneously instead of via IV.
I am still feeling quite ok today probably due to the steroids, but I guess it will hit me soon
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I have been having a hard time since Sunday night. I seem to be experiencing extreme fatigue with a side of lightheadedness. I struggled to get up and get a shower this morning. I can't imagine this to be what is expected. I wonder if my counts are off or something. I talked to the MO nurse yesterday and she said yes some people experience this but it could be an infection or hemoglobin is too low. I see the Dr this afternoon and get blood work done. I sure hope this isn't how it is going to be after every treatment. How do people get through this...
I am glad some of you are doing well. I hope the rest of us getting a helping of good health for Christmas
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dizzy girl- I have been feeling tired since Saturday. Still laying in bed. I don't have a fever. I hope your bloodwork is ok. I was told that it could take a few days for fatigue to go away.
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Summer2016 - Sorry to hear about your husband's birthday dinner
My brother got to town last night and I picked him up at the airport and he told me he wants to take me out to a nice dinner while he's in town. I was like 'don't waste your money, I won't even enjoy it' - so I think we'll go to a movie instead.argynis - glad to hear your first round went well! Fingers crossed for minimal side effects!
DizzyGirl - Sorry to hear you're not doing well. I was pretty fatigued on days 2-4 after treatment and had no appetite. I didn't even try to take a shower or do anything on day 3. I did find out my iron was super low, so that may have been a contributing factor. I'm taking supplements and trying to get my iron higher before my next infusion. I was pretty low, too, with all the side effects a week and a half ago. I just tell myself, 'one day at a time' and keep thinking about my last treatment date (March 22nd). We'll get through this!
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Jezikah - I like the way you think. The last treatment is a good way to look forward.
This treatment I am going to juice more veggies and prune juice. I am also wondering what Can i do for dehydration and nausea.
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Hi Dizzygirl----you are not alone. I too have had the lightheaded feeling off and on since Dec 8 my 1st treatment. Also, as I explained in one of my post while I had my first treatment I was beyond dizzy the entire time. I would lie back, close my eyes and see all kinds of weird spiraling designs and colors and would feel like I was on some amusement park ride. Scary and strange. My nurse said that she had not had anyone else complain of dizziness! Anyway, I still get the dizzy and light headed feeling off and on. My next treatment is Dec 29th so kinda strange that I still have this feeling. ---hope it improves for you!
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I got another IVIG yesterday, converted to oral steroids, my platelets shot up to 74 and the dr on call came in in the evening and sprang me from the joint! I screamed and jumped up and down when she told me I could go home. I just now walked 2.5 miles and am about to go get my dogs. Feelingalmost human. Blood work tomorrow.
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Good for you Bareclaws!
Here's a Happy Dance for you!
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bareclaws glad you're back home
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Woohoo! Glad you're out Bareclaws. I hope it's all onward and upward from here.
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Great news Bareclaws!!!
Scaredashell can you get any more anti nausea meds? I found the ones I had really worked well plus eating! If my stomach goes empty I feel the nausea.
I have been feeling pretty good this week. Glad to have Christmas as a distraction! I'm dreading the Jan/Feb treatments with the long cold days up here in Canada. Already planning my binge watching!
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Bareclaws------Great news to hear you are back home
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Anyone feel like they have a sore throat and TMJ? Mouth feels strange and dry.
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Scaredashell0, my mouth has been a mess since the December 5th chemo. Both dry and inflamed. I've used various mouthwashes and am manic about keeping my teeth and gums floaaed and brushed, using a soft toothbrush. I find it difficult to eat anything that's crunchy. Warm spices, like cinnamon and ginger, burn like fire. Sometimes feel the beginnings of a sore throat but it's never really turned into one. I thought this SE was supposed to wane but mine has not, so far.
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Well the heavy fatigue finally hit me yesterday around noon. Fortunately, my boss told me not to worry about working on Monday. So, while I'd planned on working a full day (from home), I quickly decided just to do a few e-mails and call it a day. I still went to the gym later on and walked for 30 minutes. but by the time I got home all I wanted to do was lay down and hit snooze. For me, the prune juice has helped stay regular and other than feeling bloated and crampy in the mornings, my nausea isn't too bad. What's driving me crazy is the rash. It started on my back Friday afternoon. Now it's spread to my arms, shoulders, hips, chest and thighs. I have a follow-up appointment scheduled for Thursday for blood work, etc. So we'll see if the MO gives me anything for the rash. For now, I'm using Benadryl cream for the itch and am going to take a Benadryl tablet too. Anyone else having similar issues with a rash?
Oh, I can't remember if I told everyone, I'm participating in a clinical trial at my cancer care clinic. The study of 3,600 US patients (90 from my clinic) hopes to improve the information around the protocol to prescribe certain medicine to people receiving chemo. The study is trying to find out if an automated system should be used to help doctors determine when to prescribe colony stimulating factor (CSFs) medicines in order to help reduce a patients risk for febrile neutropenia (condition involving a fever and low number of neutrophils (type of white blood cell)). I think the most common CSF used is Neulasta. Anyway, in my test group, if my MO does not agree with the automated systems recommendation to use a CSF, she does not have to follow the suggestion.
bareclaws - That's awesome news! I bet you couldn't get out of the hospital quick enough.
Jezikah - glad to hear you're embracing and rocking the GI Jane look. I'm not sure I'm quite there yet....although I did think GI Jane was a bad ass!
scaredashell07 - my mouth feels strange occasionally. Have you tried eating some frozen fruit or hard candy? Also, be sure to gargle with the salt/soda/water combination - it doesn't exactly taste good, but is supposed to help prevent mouth sores.
Hang in there everyone. I agree with StayMom, I"m glad I have the Christmas distraction and extra holiday activity to help keep my mind off my health.
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Thank you for sharing all your SE tips. Just wondering if anyone has had their scalp hurt? I'm starting to thin but my scalp literally feels like it's on fire. Tried some Tylenol but nothing seems to help
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My scalp did hurt as my hair began to thin. It went back and forth from being tender to a burning sensation. Now over 50% of my hair is out and it doesn't hurt at all.
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After my 1st A/C I had a very dry mouth and a pretty large mouth sore. I used biotene dry mouth mouthwash about three times a day and that helped so much. I also found that drinking gatorade and sucking on hard candy like Jolly Ranchers helped with the discomfort, but it didn't clear up the sore. I read on a forum that Listerene Zero (alcohol free) also helped. I used it a couple of times and the mouth sore cleared up. I haven't had the dry mouth or sores after the second a/c which I found odd. You just don't know what to expect with this stuff.
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