Starting Chemo April 2016
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one of my daughters came down with the flu and I'm freaking out. Last night I sent her to my sisters house to sleep, and I feel like the worst mom ever, I am so afraid to go near her and I cant stop crying over the guilt and fear, I dont know what to do, poor little thing is scared too so she wont come near me, I HATE thi
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Oh Cody! I'm so sorry! Her auntie is taking excellent care of her, I'm sure, but still man, that is so hard. Can you talk to your doctor to see what he/she would suggest? You have to be able to be a mom, even with this. Maybe there are ways you can be both? Maybe get one of those surgical masks? Have you had your nuelasta shot? It supposed to help fight infection, too. As a mom, I can guess how horrible you feel. HUGS!!!! I don't think you are a terrible mom, by the way. I think you are a mom going through chemo who wants to heal well so she can be there for her little girl.
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Ok my inner smart ass has arrived and she just saw my reflection in the mirror... And noticing that from all the steroids I took last week that at least my jowls don't look so prominent. Instant collagen fix. Not!
Chalk off another week closer to the end of therapy. Have a great week if you are on an off week like me, recouping and regrouping... If you're up to bat again, I hope you knock it out of the park! Weather forecast is getting better and so are we...
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Hi guys, I had my first round of MMM this morning (Remember we're way ahead of the rest of the world GMT + 12 hrs) . Fairly boring actually, but glad it went into the port instead of my arm. My 3 drugs are purple, blue and yellow, so I could end up as a rainbow, but so far only my pee is blue! The whites of my eyes are very slightly blue-ish (if you use your imagination) but they may get bluer tomorrow.
The only real side effect so far is a severe inflammation of my imagination! lol! I am second guessing every twinge and every feeling. Good luck to those who have Monday tomorrow!
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Thinking of - Njr426 - jgab - Pdrchick - Junebug57 starting today, best of luck.
Glad to see you got started -Suems - and are doing well. Hope the rest of your day goes well too.
I am doing fine so far, not my real self but I can manage. Might be getting constipated, as not moved since last Thurs. On Motillium to settle stomach so it must be doing too good of a job, will ring the nurse to see what I should do now.
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Codymx, it takes a lot of strength to do what you did. I have my 3 year olds cold right now because i didn't have the strength to keep away. Next time he's sick I will take more preventative measures. It's too nerve wracking worrying about getting a fever and ending up in hospital. The stress of this disease rears its head in ways you can't anticipate. Be strong. You need to do this so you can be a healthy mom to your children.
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Sue - that's my worst side effect - the imagination! I was thinking about this - if you lose your hair with the drug and turn blue, you could become a member of the BlueMan group. :P (hey, gotta laugh or we'll go insane). We could create a real sensation. I pee red, you pee blue. We could time it so we could scare the heck out of people.
Hope you continue to do well. 7of9 - the effects of the steroids wore off for me. Hopefully for you, too. Puffiness is NEVER a good thing. Hope you have a great week, too!
Numb - I've been told to take a stool softner the day I start chemo and that seemed to help avoid bad constipation. Might want to add that to your pharmacy.
Happy Monday all! Thinking of everyone starting today! And hugs to all who are nervous, worried, or just thinking dark thoughts. Hope everyone finds the sunshine today.
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Question -- if you pee blue and you get your period, does it turn the toilet purple (sorry guys -- trying here)
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Anyone having iron issues. I still don't start chemo for two weeks but my iron is really really low. They need me to do two rounds of an iron infusion before i can start chemo.
Didn't like the first oncologist i went to (although he did identify the iron issue). Going to a second one today. She sounds fantastic on paper and both the surgeon from Sloan Kettering and the head of medical at work (I work for Johnson and Johnson) recommended her so I am hopeful i will love her too. I have her in the morning and the the GYN oncologist in the PM. Yup - all parts of me get poked and prodded today. Only action my lady parts have had in weeks so i guess i should make the most of it.
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NJNancy - that made me laugh.
I don't have iron issues (at least I don't think so), but I can imagine that it would be important to resolve those before going through treatment, which is bad enough. I think you're smart to find an oncologist you like and trust. Have fun being poked and prodded. I tell my Oncologist that my boobs haven't had this much action in years. 0 -
Christine, thanks for that advice, got in touch with my nurse and she recommended Duphalac stool softener 3 times a day and then 2 Senokot at night, so got that today and hoping for the best. Pity I didn't know about it at the weekend.
When you say that the effects of the steroids wear off, what effects would they be other than puffiness, would being hyper be included in these side effects and would being flushed in the face be a side effect of steroids. I am also wondering that if the steroids make you feel good do you crash when you stop taking them. I stop tomorrow and while I feel good today I hope I don't crash tomorrow.
Thanks for the tips.
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NJNancy, I had 5 iron infusions prior to chemo. I didn't feel any different, but my iron was low so I agree it was a good idea.
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Numb - Glad you got squared away. Hope it helps quickly - and next infusion, just take right after, and follow the instructions for how often (I took it morning and night - but I think you can do up to 3 times). I really didn't feel any effects from the steroid other than the puffiness. But I've heard you can have a bit less energy when they wear off. Fortunately, it also tends to mean you will sleep better.
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Got through round one of AC. As others have said, it was pretty boring! Although now I'm peeing red so I guess that's interesting. Just hoping it continues to stay boring! I'm drinking like a fish to get this out of me as quickly as I can! Getting my Neulasta shot in the morning. Funny thing about that - I asked the nurse about taking the Claritin and she the doctors don't like us (the nurses) to bring that up but since I already knew about it and I brought it up that I could take one tomorrow and then one the next day. I wonder why the doctors don't say anything about it from the get go.
As to all the "action" we've been getting lately - one of my sisters went through this about 15 yrs. ago and warned me that all modesty goes out the window. Every new person I've met over the past month has seen my boobs! I think I've lost count at this point.
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NJR - yeah, glad you are doing well. Yeah, I peed red a few times. Good job with the water. I'm kind of shocked that the doctors don't want the nurses to bring up Claritin. Shouldn't any pain relief be recommended? I'm glad you know about it. Heck, it was the infusion nurse who let me know. Hmmm. There's a topic on these forums called "You know you're a cancer patient when ..." it's a play on "You may be a redneck..." and I howled through many of the posts. One woman said, "You know ... you go to the dentists office and automatically begin unbuttoning your shirt." That made me laugh.
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Thanks for reporting back so soon -NJR - Glad you are doing well.
Christine what meds were you on after the chemo ? I was on Dexamethasone, Emend, Motillium, and mouthwashes. I am off the Emend today and tomorrow will be off the Dexamethasone. Today was my best day so far. I am sleeping fine. I will make sure to take the stool softener immediately after the next chemo.
My mouth is beginning to get a bit puffy now like the skin behind my lower lip is feeling a bit dry maybe. I am doing the mouthwashes but it is still happening.
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Hi Numb - I have 2 drugs I "have" to take - Ondansetron (Zofran) and dexamethasone (Decradron). I was also prescribed Prochlorperazine (Compazine) and Ativan which were more "Take as needed". I take for days 2-4 post chemo. For the mouth - are you drinking A LOT of water? At least 2 liters a day? My doctor actually recommends more. Also brushing your teeth with a really soft toothbrush 4 times a day is supposed to help. I was also told that sucking on ice chips during chemo treatment helps - I'm going to do that next time. There is also a combination of Biotene and Benedryl that is supposed to be very successful.
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Swishing/gargling water with a little salt and baking soda several times a day was helpful for me.
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That's so funny about the dentist's office! I told my husband it's like a handshake anymore - meet someone new and whip out the boobs! I went to my eye doctor last week - and no I didn't start unbuttoning my shirt! - it almost felt weird to be in a normal doctors office getting a normal exam. (How boring!)
Yeah the Claritin thing was odd. YAY to these boards that I knew about it. My doctor just mentioned Tylenol if I had pain.
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OK ladies - -need advise. Im pre-menopausal (43) lymph positive and grade 3. Any similar situations? one doc said AC-T (16 rounds) and the other said TC (4 rounds). So confused. Pro of A: Im young and can handle it and its extra insurance. Con of A heavy side effects (now and potentially later) and 12 extra rounds. ugh - both said "they would support if i decided to go the other way but that is what they recommend"
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NJNancy - Do they have a tumor council? My group does - all of the surgeons, oncologists... meet to review tumors and make recommendations based on all of the data and all of their experiences. I'm 51, have IDC, lymph neg, but I have a big tumor (5+cm). They recommended the AC-T 16 rounds dose dense, every other week. It is extra insurance, indeed. I can only tell you what I am doing. I'm totally not qualified to give you medical advice.
That being said - I'm kind of miffed they are so diverse in their opinion. It's not like they are recommending something similar but different chemicals - these are an almost full 180. Is there any way to get a 3rd opinion?
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Hi everyone,
So nice to get caught up on everyone and have such a good idea of what to expect this week when I go in for Round 1 on Thursday. I got very relaxed yesterday after a fun trip this weekend and I had a relaxing day at work.
I'm working through my regime as its not a big deal, its just a cleanse
...so I'm programming myself! I'm prepared for the best. I am taking a nice long weekend after Round 1 to heal, write, and walk the beaches and sleep all I want. I have a private office with a couch and control my schedule with clients. I have enough leave to cover and I'll ask for more if I need it. I was so fearful about not being able to work and I posted on the HER2+ board and I heard from 8 women who worked through this and were fine. I made messages buddies with one of them who has 2 small kids and she only takes the infusion time off.That said, self-care and healing time off is WONDERFUL! I'm so glad to hear that people are able to take leave at work, i would if I could qualify but I don't and for me, working through this at my job I love that distracts me from cancer is great medicine.
Anyone else going to get infusions this Thursday? CJ and I are starting a Chemosabes for Thursday April 14th gang, let us know and we'll all try to connect and make each other laugh.
Annie
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7 or 9
YES!!! Welcome to your inner smart ass - she'll get us through!
Numb
No Le Croix in Ireland? And the name sounds so international! So glad to hear "its nothing to get the chemo" YAY!
Seums
"severe inflammation of the imagination" - that cracked me up! Welcome!
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Njnancy - I'm 43 as well and am getting AC&T (16 rounds) but I have invasive lobular. Is yours ducal or lobular? And I have 3/3 lymph nodes involved. One onc thought I should do hormone therapy as opposed to chemo. I had very opposing opinions. It was so confusing. Then the hormone doc changed his mind and suggested the chemo. If seems ridiculous to need a 3rd opinion but I think I would get one in your position. Or ask them for statistics on each method? How frustrating! 😡
Oh I just noticed mine is grade 1 and stage 3. Not sure if stage 3a, b or what.
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Hi everyone - hope the Monday starters did well.There are too many names here to remember, so I'll just wish everyone well.
I've stopped peeing blue, but my eyes are definitely blue-ish. If they get really blue I'll post a photo. The word Smurf has already been uttered in my vicinity. I'm threatening to get a blue wig if my hair falls out!
numb - I was warned about the steroids making me hyper - they are used to ward off fatigue after chemo, and sometimes work too well. I got what felt like a hot flash last night, but I guess it was flushing from the steroids too. Apparently both wear off when you stop taking them.
Njnancy - if I had a period I would be straight down to the hospital - I'm nearly 3 yrs post menopausal. I'm glad I was warned about the blue though - that would have scared the bejeepers out of me if I wasn't expecting it!
Sue (aka Smurfette)
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Great reading about how everyone else is getting on.
NJNANCY - it must be disturbing not having a definite decision on your chemo, a decision you know is the right one. I guess that both chemo schedules will do the job, and maybe there is no harm in getting the more stringent one which would probably be the AC, but I am only going on what I read about AC + T as I am not well up on TC. As you are receptors positive you could probably safely go on the TC with hormonal therapy and be just as successful that way too. Your lump is quite small, but then you are stage 11a which is still early stage. I don't know how I would make up my mind if I were in your shoes, unless you have further discussion with your doctors. I am receptor negative so I have no hormonal therapy I can use, so I have to go with the AC + T as that is all that is available to me. Best of luck with your decision.
SUEMS- good to hear you are doing well. I will be off the steroids today and will see how that goes. I have been having a flushed face every morning when I get up but that goes away throughout the day. I presume it is from the steroids. I think I would prefer to be a bit more tired than being hyper. At least when you are tired you can relax but there is no remedy for being hyper.
CJSHARMA - I could be drinking too much water and it is kind of making my mouth too soft inside because when I get up in the mornings after having a dry night I feel better. I was using a mouthwash prescribed at the hospital but quite honestly I think it is very strong, in that it stings the mouth off me after I use it, so I think I will just use the baking soda and salt from now on.
So far so good with this chemo regime, I have been well able to cope so far. I could say that the day of chemo I felt the worst and that was just because I was all keyed up. Actually getting the chemo was nothing, but then you go through the anxieties of how you are going to feel later on and you can actually psyche yourself into thinking you are not feeling well, if you think that is how you should be feeling, if that makes sense. I feel better than I did at the weekend but I could definitely cope at the weekend. I also think when you go out and do normal things you forget about yourself and fare out better.
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Sue - I'm thinking a blue wig would be awesome. Of course I want photos.
I am right on the boarder of being menopausal, but I've heard chemo does bring back hot flashes - oh joy, eh? I have a heavy down comforter, a lighter down blanket and sheets and my typical nights includes every possible combination. From fully covered, to no covers and everything in between. Numb - I agree - especially right after chemo, your immune system is still fairly good, so get out, do things and enjoy your life. I didn't and I think I moped a bit. I won't do that again. As for the water, I wouldn't cut back, but maybe switch out for gatorade or something with some electrolytes. The only issue with so much water is that it can flush out electrolytes - make sure you get some of those, too. And, I would start with the baking soda mix then switch over to the prescribed mouthwash if your mouth gets sores. But that's me - you need to do what works for you.
Well, going in today for my doctor appointment before my next round of chemo. I'll have to get blood work - probably tomorrow. I was just told I am to travel to Canada in June. It's between chemo sessions, so I may be able to swing it, but I have to see how Taxol effects me.
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My MO made the decision about which chemo to use based on my father's early heart attack and mother's atrial fibrillation. For this reason, she preferred to use TC. The argument for A would have been to hit it more aggressively, but my overall chemo benefit was only a few % and my Ki67 suggested an "indolent" cancer, so she/tumor board didn't feel A was necessary.
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NJNANCY - what sort of a tumour did you have, was it invasive ? Was it a recurrence ? That might make a difference to what chemo you should be choosing. They say that the size of the tumour is not that important as DCIS tumours can be quite large but don't stray. Did you ask your Drs on what grounds they were making their decisions? Could you write down what each one said and then make your own decision based on that. This is a difficult decision alright and you would need to speak to the experts to help you with it.
CJSHARM - Just wondering how you are feeling going for your second round next Friday. Are you ready for it or dreading it ? You did well this week, but hope that this thing isn't cumulative like some people are saying on other forums, and that each time we get it we feel worse.
I was all set today to go for a walk in the park, drove half way there and had to turn back I just suddenly felt I couldn't do it. I kind of feel a pressure in my heart sometimes and pins and needles in my left arm and then after a bit it goes away, all new since the chemo. It is probably anxiety but I just decided it was better to be at home where I feel most comfortable at a time like this. I was fine after a cup of coffee. I think I am feeling the effects of no steroids today.....less energy. I hope that is all it is.
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Numb - I'm doing good. I've fully bounced back and I feel close to 100% normal. Just had blood work done - we'll see what that shows, probably tonight. I think just listening to how you feel and allowing yourself to experience the sensations and not get too emotional about anything. I think you're doing awesome! I'm sure it'll be a bit harder as we go - but my doc said that it's more like the symptoms go a bit longer, or you feel them a bit more - it's not a sudden whopper if you've done well on the first round.
So, just got back from my doc appointment - good news - it appears that good ole Lenny is about 10-15% SMALLER!! From ONE treatment. Obviously the chemo ninja's are doing their job. Looking forward to the next round so we can further kick his icky bum!
She also said I was a model patient. I guess a lot of people think there is too much medication so they don't take everything the doc recommends, but then symptoms happen and once they happen, it's tough to get rid of them. So that's a good reason to make sure you take the meds prescribed.
I'd love to hear back from Cody - I hope she's okay, especially with her little one sick.
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