December 2012 chemo group
Comments
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Is anyone doing the chemo I am? Day 3 I feel very nausea, had emend and taking zofran and phenagran. Everything tastes salty ugh. Plus I am very weak and my voice sounds funny. Ugh need hugs.
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mfml I have the same concern about the next treatment. I really hope it will be same as the first one but I don't think anyone can say for sure?
I am now on day 11 after chemo and apart from a small cold I am feeling really ok. First 3 or 4 days was constipation and a little more tired than normal but that was all. I am now back to normal eating and even my taste is back to normal ... no more metallic tastes.
Still I am very happy that I don't have to work during this time, I really admire you all for dealing with work at this time. I don't know if I'd be able to concentrate any.
No hair loss as of yet ... wig and hats are all prepared but for now it's still all there. I plan to shave my head as soon as the hair starts to fall out and I guess it won't be real until then.
I am walking a lot and that really helps, it feels good to be outside.
I hope you are all doing well and don't have too bad SEs. We can and will do this and this next summer we have earned a really great vacation! I am looking forward to trecking all over the Isle of White!
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Volleymom, I am doing the same tx as you. First 2 days were good, but it went down hill after that. Food and water tasted like metal. I started with the fuzzy mouth feeling before the sores came. Right now I just have one right inside my lip that makes my lip look swollen like I got hit in the mouth. Managing the SE's has been a matter of trial and error. I am on day 10 and finally starting to feel better. (((((((hugs)))))))
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volleymom77 Hugs you!
Sorry to hear you feel bad! Hope the nausea passes soon. I had emend as well and some other meds and I didn't have any nausea at all. My chemo is FEC so not the same as yours.
Had bad taste for a few days, I think it was a week before everything was back to normal.
I hope you feel better soon! Hugs and love!
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volleymom - so sorry to hear you are feeling so crappy. I know alot of people here try not to take too many of the SE meds - sort of wait to see if they come... but I did the opposite. I took them religiously! Even if I felt OK I took compazine days 2 and 3 every 6 hours then zofran every 8 hours day 4 and 5. I really have to believe that is what helped me so much. And I drank soooo much water. Also - I hadn't fully appreciated that constipation can make you nauseaus - so once I got onto the stool softeners and Senokat - I did better. (I think I was afraid I would get the big D! so I initially shyed away from those even though I was well warned.) Also - I think I wasn't fully warned about indegestion.. started taking pepsid around day 3.
Another biggie for me - I felt so much worse if I layed down flat. Went to sleeping in a recliner... soooo much better. I just felt like stuff might come up if I laid down flat.
I feel so bad for you - big cyber hug - you sound just miserable. Hang in there - you will turn the corner. You are one treatment closer to being done....
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mfml - had my first chemo on nov 26th and didnt get the mouth sores until the end of last week (10 days later)..they are managable ...ive been using salt water in the morning and afternoon and peroxyl at night time before bed..i can still tell they are there but not painful at all...havent shaved my head yet..scalp is itchy and tender though...second chemo is on the 17th and was wondering the same as you if it was going to be the same or worse..only time will tell..8)
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good to know pands... I will watch for the mouth sores and I guess start the rinses ahead (?). Good luck on the 17th... let me know how it goes...
I am on AC every 2 weeks... I notice alot of folks here are every 3 weeks... I am wondering if I should check that with doc. Surely they couldn't have "accidentally" scheduled me for 2 weeks when it was supposed to be 3? Anyone else have AC every two weeks??
Mia
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Volleymom - I am on the same chemo as you. I am also Day 3 out from Friday's first round. So far, so good with the SE's. No nausea yet, but I started the Zofran proactively. Keep me posted on how you are feeling; hope things get better before they get worse!
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Asked my PS today about the incisions opening up after they appear to be healed, and if it has to do with chemo. He said that usually when that happens, there is an infection inside somewhere (I think he called in "nonclilnical infection"), then since the chemo breaks down the immune system, the infection may get worse instead of better. Hope my interpretation of what he said makes sense.
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yikes... I guess I just have to stay on top of it. I went to PS today and she wants to see me again Friday - I guess to watch it. I'm gonna ask her about the "nonclinical" infection.. thanks for the info.
Good luck with the SE's! I like the stay on top of it approach - worked well for me (so far...)
M
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OK - I have a funny story that may make some of you laugh for a minute. I scheduled "pre-imptive" IV fluids for myself for last Friday - 2 days after my first chemo. I was fully convinced I was going to be horribly sick and need them. I went into the room - and the male nurse came in and said "so - you are here for IVF" - and I said "Yes - but I'm not really sure I need it. I don't feel great - but I'm not so bad really - I probably should just go home and sleep". He stuttered, looked confused.... asked me if I wanted to talk to someone - I said - sure I'll talk to the doctor since I'm here. he ran out in a panic - very flustered - to find the doctor I guess. Then I heard alot of commotion outside the room. He thought I was there for In Vitro Fertilization - not IV fluids! What a laugh we got when he came back in - he was so embarrassed! I am sure the staff is still laughing at him.... I'm just glad the confusion didn't go any further
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Mfml - no way!!!!!!! That is a classic! Love it!
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Friendgwen - I'm glad it made you laugh too! I forgot to mention I was at my PCP's office because its close to work - the poor guy hadn't a clue I was on chemo -the onco had set the appt. up.
Hope you are feeling OK - I see we both got chemo 1 on 12/5? Was doing great - just had a sinking spell - got too lax and stopped drinking water I guess!
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Hello people. I have been lurking and reading and learning but since I start my first chemo tomorrow, I guess I will join in for real. I live 2 hours from the city where I will be getting my treatments. My husband is driving since I don't know what to expect. I got a prescription for Decadron to take in the morning and that's it. After 4 rounds of CT 3 weeks apart, I will do 6 weeks of radiation. haven't figured that one out yet. Four hours round trip driving will not be fun. Guess I will cross that bridge when I come to it.
I have been worrying because I was not told about any types of support services offered at my clinic. I hope I find out more tomorrow but if not, I guess I will have to be proactive and find things out myself.
I am really glad I found this board. If I would have found it sooner, my initial diagnoses would have not been so terrifying! -
Welcome MTJulie! I am glad you decided to post... I also did alot of lurking before ever writing anything and I'm glad I finally "got on here". It was a big step for me to start posting on this board - but it really has helped me alot. Having people who understand all of these "small" issues and questions I have really turns out to be more valuable than I had appreciated. There is alot of good support here. Especially important if you are unsure about the support services at your clinic. I do hope you find good support at your clinic - I'm sure you will. But you can always find more here.
Lots of luck and hugs tomorrow - I'll be thinking of you! Try to come back and let us all know how you make out.... You can always find someone here to give you some first hand advice about whatever side effect or fear or whatever you may have. Start drinking lots of water now! I know that might be difficult given the long drive - but I think drinking alot before and in the 4 days following chemo helped me alot! I feel strange giving advice since I have only had one chemo...I'm no expert - but it sounds like you need some encouragement... After tomorrow you will be that much closer to having all of this behind you - hang in there.
And try to get a good nights sleep? I now that one is a tall order!
Take care and cyber hug-
M
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Thank you for the advice M. I am scared. I really was hoping that I wouldn't have to do the chemo but after discussing it with the doc, I guess its the way to go. I hate all of the waiting and uncertainty that goes along with bc. I have truly thought I was having a nervous breakdown at times. Never in my life have I cried as much as I have in the last month. I can really relate to the poster who keeps thinking she might wake up from this nightmare. My best friend is a 10 year survivor of stage 3 bc so she is a great inspiration to me, and my mother who is 78, had it 24 years ago, had a mastectomy, got it in the other side and had another mastectomy and is cancer free 4 years later. So I have great hope that I will be as strong and tough as they are.
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Mfml that is a great story ... What a laugh. To address your ? about the every2 week treatment versus 3, I actually had a choice. There are so many different treatments and timing. I could take dose dense which would be 4 treatments of AC every 2 week's followed by 4 of T. But I opted for TAC every three weeks. Thought that would give me more time to recoup between treatments.
I haven't seen anyone else doing the tri-cocktail af TAC. Anyone else on this plan? Seems like everyone has the cocktail split. -
DCSandpiper, Doc said "you can only take tylenol, nothing else without talking to me or the chemo nurse!" So I haven't taken anything for the flu like symptoms. It has eased up for me, but yesterday had a monster headache which today was better. I am struggling the most with the heartburn and feeling like my food is sitting just at the bottom of my throat....although I'm not really nauseaous anymore (thank goodness!) I will definitely be seeking something from the Dr on that issue. Hope you are feeling better everyday!
Steiner, wowwee, I sure hope you are okay. Let us hear back from you soon. Hang in there! I took Compazine and it made me feel WORSE! So I didn't take anymore of that one. I was on Zofran for 3 days per Dr orders, but as soon as I could I stopped it. The phenergan may make you feel worse and more sleepy, just a little warning, but if you are REALLY sick (vomiting), it could be the right thing. Like a number of other ladies here, I hate taking pills. So the sooner I can take myself off of them, I will.
Banksy, if you have a TJMaxx or Marshalls around, check out the scarf selection there. They are cheaper and larger ones that are good for head covers.
JenMas, I struggled with the constipation for several days until I took Miralax, and it gently does the trick.
It's good to have onhand. I didn't normally have issues with the "c", but this is what my chemo nurse (and my mom) recommended. They were right. It does get sort-of "thick" if you put it in cold liquids. My hubby made me a hot chocolate and put it in... never would have known it was in there. So maybe keep that in your bag of tricks at home
You ladies are fabulous and we'll all get through this poisoning together! Have a great night. -D
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SkiMommi, I have heard of the TAC all together. I'm in a clinical trial and it was one of the options, but not the one I am on. My Onc said she thought it would take my counts too low and it was too hard on the body (her opinion.... as you know all the Onc Dr's have strong opinions!) I'm taking a split a/c x4 every 3 weeks, then weekly T x12 weeks. How are you holding up in the treatment? In a way I wish I could have gone for the TAC all together because it would have shortened my chemo by MONTHS. Take care.
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MFML, I'm on AC 4 doses every two weeks and then Taxol every two weeks for the next four doses. IV/IVF story is amazing. Thanks for a good laugh.
MTJulie, be as kind to yourself as possible. You are in the right place and among friends. Best of luck tomorrow. And just know, what you are feeling is totally normal. This is a huge shock for all of us and so much information to take in so quickly. I'm a college professor and about 10 days ago I had a total meltdown, realizing that for the last six weeks I hadn't thought about my research for an instant--the research that I have loved these past few years and the book I was planning on finishing by the end of the year. But then I realized that I have spent these past few weeks learning an entirely new language--one I never wanted or expected to learn. But I've been reading everything I can get my hands on and learning on the fly so that I can make thoughtful choices. We are all--each in our own way and each with our own skill set--trying to muddle through this. And we will. I'm following not long behind you--my first dose is 12/17. I'm scared out of my wits--and grateful every day for my family, my friends, my job, and all of you on here.
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Dawn~I'm getting the same regemin as you. AC every 3 weeks, then 12 weeks of taxol.
I started Friday December 7.
Feeling good so far. I had a bit of C, but that was taken care of with stool softener 3 times a day. I had a headache on day 2, probably from the zophran which I only got before the treatment. I'm taking acidophilus and eating yogurt, plus I take vitamin A, and am rinsing my mouth with the salt/baking soda mixture to combat mouth sores & thrush.
I pray it works.
Blessings
Paula -
Hi All
Sorry that I can't get all your names to the questions but here are a couple thoughts/responses:
Wigs: Yes, insurance companies will cover. Mine was $350 and I felt so guilty about that since its not even real hair, but it does look great and will be easy to take care of. Glad to hear others have paid that much!
Walking: Thanks for the tip! My dog is back and I'm planning lots of walks today.
Mouthsores: I've been swishing and gargling a couple times a day with the baking soda and salt formula. It really helps relieve and I think it might help be preventative too. The literature says that chemo kills fast growing cells. And those that line are mouth are fast growing. So they're not growing enough and I guess it is more unprotected or raw than normal.
TC1 vs. TC2-4: I understand that the effects are cumulative... it is supposed to get worse (tired, more easily susceptible to viruses, mouth sores, etc)... not sure if that applies to the flu symptoms
Nausea: I only felt nauseous (sp?) once. I took some prochlorper 10 mg and that took care of it right away. It is also supposed to make you drowsy (rather than get constipated, which was the other medication of choice) but I didn't feel drowsy. It just worked.
Feeling better today and food actually tasted good this morning (trader joe's raison bran (+ TJ almonds) and tea with milk!) :-) Hoping this is a sign things will be better now until the next infusions.
Hope you are all doing well/better!
Sandra
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Dawn1008 I haven't started treatment yet. Was suppose to start this Thursday, but am delayed because I came down with chickenpox.
Un-effing believable! Everything is so out of control right now I'm starting to think maybe the Mayan's were onto something . . . is this all leading up to the end in a couple weeks? LOL -
MTJulie - Welcome! Good vibes are coming your way for both an easy drive to the infusion center and a relatively relaxing treatment. I actually enjoyed the forced downtime to read People and play on my iPhone. Also, like you my mom is a survivor. It's been 18 years and all she had was a single maxtectomy without any treatment. She's 83 and on zero meds. She keeps telling me she hasn't lost any sleep worrying about my cancer cause she knows I'm going to be fine. She worries more about her one year old puppy!
Dawn - Yes, miralax! That's the anticonstipation stuff I took as well and it works great (yet slowly and gently).
Banksy - I know what you mean about becoming the research queen. This time a year ago I was obsessed with all things related to getting my daughter into college (and paying for it). Now I'm slowly becoming an expert on breast cancer. Ugh! Not what I was planning but so grateful to have all this information available. I also purposely limit myself from flinging too deeply into the wild west of the web where there's so much scary or wrong information available. It's challenging finding the fine line between science and understanding what it's all about, and mixing it with the personal stories of survivors. I've become the collector of survivor stories from both friends and strangers. I have had about five women contact me to share their (upbeat) stories and it's been great.
Day five post first chemo and other than food tasting odd I feel pretty normal! Have a great day ladies!
Gwen
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Hi Ladies-
I am on the AC x 4 doses every two weeks and then Taxol x 4 doses every two weeks. Start my treatment Thursday and am very nervous about it. So glad I found this board... Such great information and support. I am going to go buy some of those items suggested today. I am a dance teacher and have been worried about the side effects. I love my job and students and am going to try my best to keep up with my schedule. Scheduled chemo Thursdays that way I can hopefully be back Mondays.
One tip I saw on another board was to chew on ice while receiving the medications... It is supposed to help with mouth sores. Not sure if it works, but figured I'll give it a shot. Hope you all are doing and feeling great! -
I am also on dose dense A/C for 4 rounds, then Taxol for 4 times each of them every 2 weeks, providing my blood counts keep up. I had a delay the last round due to dangerously low neutrophils, but hopefully this time they will come back up with the help of the neupogen shots which I give myself daily. I rinse with baking soda and water each time I eat just as a prevention - so far, so good.
Hope everyone has a good day - I started my chemo November 20th, so I go between the November and December threads!!
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I need you ladies so bad right now. I had been waiting the last 2 weeks for the results of the Oncotype test or whatever it was. The results came back mixed. My original dx was ER + PR - HER2 -. The results from this test indicate that the tumor is ER -, PR - , HER2 -. I just don't understand how it can just change nor do I understand WTF it means? Also, in the original path report I had a + intrammary node but the final didn't locate it. So now radiation might be back on the table. I just feel like things keep changing and when I get comfortable, something changes and I lose it. He is going to have the tumor's ER/PR tested again.
Start chemo next tuesday (merry xmas, right) - 6 cycles of Adriamycin, Cytoxan and Taxotere.
I wish I could stop crying and this xnax isn't doing shit.
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Hi everyone I got the port in and start chemo tomorrow i am so sore have been in bed most of the day I have not wig shopped yet but i have looked at a few in some catalogs I don't know how long ti takes for your hair to come out my mom never lost all of hers it just thinned out
Steiner my MO gave me a script for compazine i got the generaic one hopefully it will work i will have to go back Thursday for a shot but i can not remember why maybe i will start a dail diary to keep up with all of this !!
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It's the evening of day 12 and my hair's starting to come out.
I thought I was prepared ... I am not. I think today is the day I've been crying the most ever since I was diagnosed. I know it's only hair and it will grow back but still ...
Wish me luck ... I am grabbing my scissors and the raisor now.
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Good luck Chrisvel! Had my shaved today...feel much better now that it is gone and not coming out in clumps!
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