Anyone starting chemo August 2016?
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LisbethS. Hope you doing well and got some sleep.
Dara .. That breaks my heart for your grandson ... Let me know if we need to go take care of that teache. ☹️ I hope you aches don't get worse. Mine hasn't set in this time yet but I'm ready with Norco too this time.
fireheart43... Hope you were able to enjoy your game ... You deserve it.
Annie Tater ... There are so many emotions I never knew I had in regards to my skinny hair that's gone. I don't feel I'm handling this all gracefully the last few days ... Negative thoughts keep invading my normally positive mind. I keep boohoo' at the drop of a hat ... Or cap....as I live with now.
I need to post a new picture but haven't the heart yet.
Love & hugs 😘
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Thanks AnnieTater. I'm right there with you with all the emotions! I went to chemo class today and left a bigger mess than I went in. For 2 hours all I heard was that I can plan on being very very sick for the next 5 months and of all the side effects I WILL get, not that I COULD get. I was told to basically plan for the worst of everything. Being so tired I can't function, lots of weight gain, major blood count problems, nausea that may not be controlled, severe constipation and diarrhea, heartburn, you name it, I'm going to have it! I was shaking so much when I was told to sign the consent form. I just sat there and was finally told "are you going to sign it or not". It didn't even look like my signature. Then they took me to the infusion center. BAD IDEA!!! I won't even say what was going through my mind! But I must have had the look of death on my face because everyone was staring. Yes, then there is still the hair thing. They said to expect it completely gone in 7 days after the first treatment. That is still the hardest part of this. Not sure how I'm going to be able to handle it when the time comes. I can only imagine. I have never been so scared of anything in my life. Ok, that's the end of my venting for tonight. Thanks for your support!
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wow, those people are terrible...I have not had any of those problems. Hair falls out after 14-15 days. I just had my 3rd A/C infusion 2 days ago and just told my husband, if I did not know I had chemo, I wouldn't believe it. I feel fine. Of course, I usually have some issues days 3-6, when steroid wears off, so we will see. Just follow advice on these posts. Chew ice during infusion and take Claritin for bone pain after neulasta shot. They give me so much nausea stuff in my drip, I don't even take any at home, so no constipation. I know I may be lucky but it is possible and I am 67 years old.
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Jiffrig, that is very encouraging! I'm so glad it's going smoothly for you! What issues do you have on days 3-6? I thought I might have a good chance at not having terrible SE. I have always been very healthy with no problems. I rarely take any medication and am hardly ever sick. Surgery was easy. Hardly any pain and only 1 pain pill the whole time. I was driving in 36 hours and back to work in 48. I healed very fast and barely have any scars. I thought this would be a good sign as far as chemo is concerned, but apparently not. I didn't mention before that at least a half an hour was spent talking about constipation. I've never had a problem with that, but I guess I will now. Oh and one more thing that I've never heard from anyone on here. I need to be wearing a mask most times (even at home) to avoid any germs. That is not happenin'! I was told too that my age has a lot to do with side effects. I thought at 54 that was considered young as far as this is concerned, but again, apparently not. I can only hope and pray that they are very wrong in what they are telling me. Funny thing is that just on Monday the doctor made this sound like a piece of cake. You just go, sit there, get the infusion, and go home. Then wait until the next time. Maybe get a little tired, but nothing else. That's what made me freak out because I got told the exact opposite. I don't even know who to believe anymore!
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Did you tend to get sick with pregnancies? I never did and one nurse told me that is an indicator of your nausea tolerance. The only reason you get constipation is from nausea meds. So if you don't need them, don't take them
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Seq24 - I have to say I was getting really mad reading your chemo class post. I never had a chemo class and kind of glad I didn't! I'm sorry that they scared the crap out of you. I think I've posted this before but I'm going to say it again, a lot of side effects are manageable. You feel sick, they have a pill for that. You feel constipated, there is something for that. You feel tired, sleep. The worst part for me was the achy feeling from the Neulesta shot. For me, it wasn't like I want to cry pain. It was in my neck and back so laying down was tough. Once I was laying down I didn't feel it again until I would turn over. This time I'm going to start my claritan 4 days before treatment, so tomorrow. My white blood cell count is very low so I'm not working until after my next appt. on Wed. I had no problems eating at all. I did the ice chips.
I'm going in to my next treatment thinking- okay, it may not be same, Could be easier or could be harder. I'll deal with it either way.
I know this is tough but you will be tougher!
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That's awful if they give you a chemo class that loads you up with fears of worst-case side effects. I can definitely understand telling us what to be prepared for, but not to jump ahead and make us assume the worst in every respect when the actual outcomes seem to be quite variable, and the situation is already packed with stresses.
I'm not sure technically I had a chemo class, but the nurse navigator at my facility did meet with me and gave me a hefty resource notebook which has various instruction sheets if this or that happens. I've used some of it based on what materialized in this first round.
For my "tough regimen" (their term), the main thing I'm being warned about as high-probability/virtually guaranteed side effect is fatigue.
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Good morning everybody!
I had my 3rd AC infusion today and after an unintend nap in my recliner- thanks steroids! -I've been since 5:30. Sad others are dealing with the steroids but comforted to hear I'm not alone.
I have to say, that dang Cytoxin starts giving me the worst so use headache within 5 minutes of the drip starting. They have slowed the drip each time to see if it helps. Today's was two hours with a pause to administer Benedryl and fluids because the headache came in like a bull AND they had given me Tylenol beforehand. The headache bothers me for the rest of the day and I have to take more Tylenol when the initial dose wears off. I thought I saw someone else write about cytoxin causing sinus headaches but my nurses said they've never seen it and are flummoxed as to why it's happening. Do any of you Cytoxin gals get headaches too?
Oh! I've been taking our ginger capsules every morning and have had very little nausea and have only had to use rx nausea meds a few times.
Re: our crazy BM's. I drink a prune juice cocktail (8oz over lots of ice and topped with flavored seltzer water) every morning and take docusate in the eve. The cocktail is actually decent until the sore mouth days come. Then, the seltzer seems to sting a bit. Anyway, it seems to do the trick unless I have se's that call for narcotics. Then I snack on a handful of prunes and add a Senna for a morning or two.
Hope everyone has a great Saturday! I'll try not to overdue it on the steroid crazy until my crash tomorrow
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Seq, I'm mad too at that chemo class. I have so many friends and family who have gone through chemo and NONE have had ALL the SEs your class mentioned. For me, I've had two infusions, and they both have followed pretty much the same path, but a little less strong this second time. My backs of my legs have just ached for a couple of days, but I take norco and use a heating pad and it seems to help. I awoke with a totally whet tongue again yesterday, it doesn't really hurt, just don't have a lot of taste buds. Today it's already getting better. Yesterday my DH got me a chocolate shake and it was delicious and I could taste it! Seems savory is more dulled with flavor. Will you be getting the neulasta pod or injection post treatment? That is to help rebuild your WBC so you don't get sick. Other than the first 5 days or so post tx, I've met friends for lunch, gone to the movies, gone, shopping, and been around even my little grandkids, all without a mask! I just request that everyone wash hands a lot around me and I'm super careful of washing hands or using sanitizer.
My MO said SEs shouldn't get worse as I go along, with the exception of fatigue. I don't have to work or take care of children though so I find I just take a nap and I'm fine. I've heard that exercise helps ward off SEs, but I'll be honest, I haven't been really good about that. I need to do better! I haven't thrown up once, and constipation hasn't been an issue as I start the day of tx and take miralax for the first 4 days or so. I'm off it completely and all is back to normal. It's the Zofran that is so hard with constipation I hear, and I've been lucky not to have to take that past the day of treatment. Absolutely no weight gain, in fact, I usually lose about 5 pounds the week after infusion. I'm still about 3 lbs lower than when I was first diagnosed. I'm careful about what I eat, but have certainly cheated with a few things.
Today I feel a lot better, got a great night's sleep last night and bone aches seem to have subsided.
It's a long weekend, so hope you all are doing OK. Probably not going to many parties or barbecues, but that's OK. Loaded up on a couple of Netflix and will just relax (gee like what else have I been doing???) Thinking of all and also getting steamed at all the stupid people in this world who say dumb things, and should know better!
Cali, I just may take you up on your offer :-) No 5 yr old should say he's "scared" to go to school! Hope any of you in Hermine's path are safe and dry. Dara
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Jiffrig-I had some morning sickness (it actually hit every night after dinner) for 3 months with my first child, for the second I had some nausea for the whole time, but never had to throw up. Just didn't feel well and was very very tired. The dr. also told me that if you get motion sickness, that is also a good indicator. I have a big YES to that!
Kz-Thanks for the encouragement. I am worried about the pain from the Neulasta. They said to take Claritin a day before then I think 4 or 5 days after. I'm just as nervous about the SE of that as the chemo itself. I was also told that once the Taxol starts I need to take Claritin continuously as it helps with a lot of things for that. I'd never heard that.
One other thing I was told was that I had to get these cold mitten things to wear on my hands during infusions to protect my nails. They did not mention what they were called or where to get them, just that I needed to bring them. Does anyone know anything about that? I have a mile long shopping list of other things I need to get. I just want this to be done! This has totally consumed my life and I have much better things to do. I am sure you will all agree.
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Seq, the hand and foot icing is to help protect your feet and hands from neuropathy and also some discoloration of nails. I haven't done that at all. I've had a couple of tiny prickles in my feet but no discoloration or ongoing problems. The bone pain from neulasta s like the dull aches from the flu for me. I switched this time and took Allegra and am still taking it. Someone said it was recommended over Claritin so I figured I'd ck it out. As far as nausea goes, I was really sick with both pregnancies, and even only put on 18 lbs the whole pregnancy with my daughter due to nausea. But I've only felt a tiny bit of queasiness once or twice with this. I've included a pic of my nails so you can see no problems so far. I hear it's the taxol/taxotere that is the yuck stuff. That's also the one I reacted to this last time, but the benedryl and steroids took care of it right away. Jst take things one day at a time, and remember that we all are different. DON'T be afraid to let your MO know of any SEs. They have so much to counteract the SEs and don't want you to suffer.
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Oops. forgot the nails. No discoloration, no icing :-)
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Icing is just for taxanes and you can just use frozen peas or bags of ice. CVS and Amazon are making a killing off of all my purchases! Everyday it's something else
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Thanks Dara. Your nails are beautiful! They also said tea tree oil helped with the nails, but that stuff smells so bad! I was told the opposite about that Taxol. That is is much easier and a lower dose, although I was told once again to expect the worst possible side effects, same as with the AC. Do you think I should go get Allegra instead of Claritin? What is the difference between them? I bought a big package of Claritin at Sams club yesterday as I was told I need to take it not only with the Neulasta shots, but all the way through the Taxol treatment as well. Have you heard this before? Seeing that infusion room for the first time yesterday was enough to put me into a panic attack.
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Claritin seems to be the most commonly recommended. Someone on this site in early August said their doctor recommended Allegra. I think I'd try the Claritin first since you have it. And not everyone even gets a reaction to the Neulasta. I think I get it because of hip and knee replacements I've had. (I'm quite bionic!) I think the allergy meds help a lot with a wide range of SEs. The first infusion is the hardest simply because we don't know what to expect so of course we expect the worst! Today I'm doing so much better and just ate a big bowl of the most delicious watermelon, ice cold and wet! Also feel well enough that I just ordered a new fitbit as the lumpectomy thread has started up a sub group and I know I need more exercise!
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I take Claritin a couple days before Neulasta and about 4 after. Last time I was miserable by day 3 but this time so far so good.
I remember leaving my chemo class in tears and I kept thinking I was doomed but I think they forget we are hurting inside and they just run down the list of everything that can go wrong.
I don't ice anything because I'm already old in the fusion room.
My biggest fear right now is all the negative Triple Negative stuff I keep seeing. I don't look for it but it keeps coming my way. I just try and stay on this site but I don't want to be uninformed. My MO said stay off the internet. Scary
Love & hugs 😘
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Wow- you can get behind fast on this board! LOL.... I've read everything as they come up, but now forgetting what I read.....will need to back track a few pages.
Sensitive- I loved your photos- thanks!!! Definitely made me smile.
I do have to say that I did actually get a "stupid comment" the other day on the phone..... it was "well it seems like everyone gets something" um....ok I guess this is "mine" lol. Then she proceeded to list off the family members that have lived/died with the different cancers. Thanks. Have a nice day.
2 things I'm pissed at- DaraB's teacher situation- please keep us updated. So frustrating, and if a 5 year old senses it, makes me even more upset. We already had one crappy NP (can't remember who had that as I type), and now we've got Seq24 with the crappy chemo class! Really people?!! Seq24- everyone is right- it's the waiting for the SE's and constant wondering what's happening and why that makes is worse. My chemo day was "fine".....yes, had SE's, and wonder if I'm still having some every day. In a way- it's good you know what's causing it (not some random virus), and you know it WILL go away. I was totally sick when I was prego, and I haven't thrown up at all with this. I'm nauseated slightly lately, but it could just be my sinuses and the weather change and I probably would be nauseated chemo or not. Who knows....just be aware and like my NP said- they DON'T want you to "deal" with the side effects....take the meds that help. Don't wait and see if you can tough it out, there's no need. Since my SE's are better, I'm not playing with my hair waiting for that "ball to drop". I love everyone's feedback and how a lot of folks have taken charge of it.
I appreciate EVERYONE'S posts....I am so thankful and grateful for you all. I just need to stay on top of this better so I can comment on what you're all saying!
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Mix tea tree oil at least 1/4 parts with another oil, almond, coconut, etc., to tone it down or it will burn your skin. Use twice a day on toes only during taxanes. It is an anti fungal and will keep nails from falling off after. Dara is right, thoseof us that have the most problems with neulasta have pre existing "situations". It goes to those spots and your "long bones" ache due to the bone marrow being stimulated to produce WBC.
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Thank you everyone! Such great advice. I have about 50 pages of stuff to read about all of this from the chemo class yesterday. I am in a fairly good state of mind at the moment but I know that as soon as I start reading I will go tumbling right back over the edge. I truly appreciate all of your caring and support. I may not be able to respond to every post, but know that I am reading. Sometimes I get so overwhelmed and can't stay caught up on everything. Thank you again!!!!
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Hello everyone,
I started my AC+T Chemo on August 12.. I will have 4 rounds of the AC and then 4 rounds of the T over 16 weeks. The first session, I didn't seem to have any SE's except fatigue. When I went to get my blood tested before my second session, I was using 300mg shots of nupergen for 7 days after my treatment. My blood count was .6 on Wednesday. I had to go early on Friday to have a second blood test done and it was up to 1.7, so I had my second session. This time is weird. I have had indigestion since the infusion.. Feels like something is stuck under the lower part of the breast bone. I have drunk a lot of water, and that helps some, but it comes back with the next meal. In the afternoon after lunch, I get chills and cover up completely and then sleep for 5 hours. Has anyone else had this problem?
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Ladies, it is a must to remember that we are all different. They give us a list of POSSIBLE SE's, but that does not mean you will get them. Take it one session at a time and don't borrow trouble. We will preserver. All of us.
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Hi All,
I am having neoadjuvant treatment(chemo first and surgery second). My tale is pretty uneventful until earlier this week.
I had a power port installed on August 10th, my first Chemo treatment on August 11, extra fluids on August 12th with a Neulasta shot, and extra fluids on August 13. The extra fluids are an attempt to prevent kidney damage from some of the Chemo drugs.
I had no nausea or vomiting. First constipation then diarrhea day 1 to day 6. Manageable. Funky mouth from about day 4 to about day 14. Started to lose my hair at about 14 days after first treatment. I have a few strands left but they look dumb. I am thinking of having my daughter shave my head. And of course some fatigue.
The real fun started about day 20. The day before I was to have my second treatment. I had what I was thinking was swollen glands in my neck which was worse from the day before. I call my OD and he sent me off to the emergency room. Long story short my body/chemo drugs started attacking the power port I had installed on August 10th. I blood clots above the port and in my neck. I had the power port removed at the hospital on the same night by the BS. My second treatment has been postponed by a week. I am now on a blood thinner (Eliquis). My body needs absorb the blood clots back into my system. I think this is going to take way longer than I would like. Internet searches seem to indicate it could take several days, several weeks or several months.
I hope I am one of a very few. Take care Ladies.
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Welcome Mycatspot! There are a few of us doing chemo first, then surgery (including me). What a crazy, horrible experience...thank you for sharing and wishing you a fast recover from this! Please keep us posted.
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Ohmigosh, MyCatSpot! The possibility of a port-related clot was mentioned at chemo class. The MO said she won't administer Adrimycin (sp?) without it, but I hate to hear that you had an issue with yours. I hope all goes smoothly for you going forward.
Seq24, possible side effects were shared at my chemo class, but both the nurse and the written material emphasized that not everyone will experience every SE. It sounds like "full disclosure" is being translated as "scare the pre-constipation crap out of the patients!"). Incidentally, the most common side effect of Perjeta, a targeted drug for HER2 positive women, is diarrhea, yet some women have constipation.
ElizabethAM, you'll obviously want to double check with your doctor to rule out something more serious, but my chemo class nurse mentioned heartburn / acid reflux as a common side effect and recommended having Pepcid, Zantac (and maybe Mylanta?) on hand. I'm lucky to have a Costco not far away because their generics cost a fraction of the brand names. I think chills was one of the conditions I was supposed to report. (I need to review everything again.) Is there a doctor on call so you don't have to wait until Tuesday for guidance?
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so hair is officially buzzed. Was hurting so bad night 12 and 13 coming out in clumps that it was shaved yesterday (day 14) and my wig was fitted. Went out with a freind today who asked about an hour in, when my hair would fall out. When I told her I was wearing a wig she was floored and couldn't believe how real it looked- so that felt good.
I find it so odd that I can give myself a "bikini wax" with my fingers! Lol... Strange and interesting facts about chemo that I find fascinating! Oh- and those charmin wet wipes for adults that I used to laugh at?? Best invention ever!!! The bladder infection appears to be all cleared up so that's a plus!!
Hope everyone finds a chance to relax a bit this labour day weekend!
You girls are the only ones I plan on showing my bald head to!....
Pic below is me with my hair (left), shaved (middle-duh) and wig (right). You all may be the first and last people to see me hairless!
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You look lovely in all the photos, HopeFloats. The bikini wax comment was a hoot! Gotta see the humor in the midst of all this.
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I can't tell that's a wig Hopfloats! You look great.....I keep feeling my head...I guess I'm on Day 11, so helpful to know. I agree with VLH- the comment was great!
I did read the book "Let me get this off my chest"....a quick read. She doesn't do chemo, but 2 bouts of breast cancer I enjoyed her story.
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Hopefloats you look beautiful.
My head is still tender since shaving it so haven't worn mywig yet just caps or scarfs. I am one that hates anything on my head.
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Hi Ladies,
I haven't posted in a few days due to being very tired. I went to my E.R. and my blood counts were low so I got some medicine through the IV and also some pain medication which made me feel so much better. I had taken a little tumble down 2 stairs and fell flat on my knees and stomach. I couldn't brace myself, just went down. X-rays showed no fractures, just bruised knees. I would say the worst side effect for me is the extreme fatigue. I feel guilty not cooking dinner but the family is making do. Nothing tastes good but I am thirsty. I know this treatment affects everyone differently but I'm thinking if I want to continue it. I want to have a good talk with my MO before I make the decision. I am glad for those who are not experiencing as many side effects. My cousin who is a bit younger than me and had uterine cancer a year ago is encouraging me. Take care of yourselves and I'll let you know what my doctor recommends.
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Candy! So glad you're ok and no fractures. My husband has been cooking almost daily and working full time. If I can get the 13 year old to step up, that would be great. How far along in the treatment are you? Take one day at a time....we want you healthy.
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