Starting Chemo April 2016
Comments
-
CJ, my MO said that although there are cumulative effects (like fatigue), the first round is often a general indicator of how you'll do (bearing in mind that some people find out from the first round that they need an adjustment to their strategy, like more or earlier medication for side effects). I'm glad this round is going well for you!
0 -
Numb and CJ - great to have you guys leading the way and reminding me (unfortunately I have done this before as it is a recurrence) but the last time I did chemo my 3rd and 4th Taxol were easier than my second. As for the AC - the first one was the worst and they got better too (maybe management and knowing you're getting through shifts the balance of power mentally . Weird, it was spring time then, four years ago. I do think the nice weather and sunlight helps ones mood / mentality.
0 -
7of9 - NICE to know that I'm not insane! I hope it does get easier! Thanks for weighing in! I think some of it is your body knows how to react. Okay, I'm going to tell myself that.
Hey - is anyone making any diet changes - any research based articles on what to eat for this crap? There's a lot of hoopla out there and it drives me insane. I have a science background - I want facts to back my ideas.
0 -
SFAR - My insurance company (Cigna) denied Perjeta initially. I am post surgery, non-metatastic and non-reuccrent. My MO got on the phone with the insurance company (Cigna) and she was able to speak with one of the Cigna doctors and got got them to approve it. Funnily enough, the doctor they had her speak with was a psychiatrist...she pull the "I'm a board certified oncologist and i know what's best for my patient' card and basically bulldozed them. I'm very thankful to have this targeted chemotherapy drug in my regimen!. The SE's can be a little rough, but I've been tolerating them okay (not great, but okay) so far. I hope you're able to take advantage as well! Good luck!
0 -
SFAR - Welcome to this group. I am sure you will get good advice here and best of luck with your treatment.
MELLIE361 - Hope you are doing well and all set for tomorrow. Best of Luck.
0 -
I had a good day today, went for a walk by the sea as it was a glorious day here. Today is my first day to really feel the fatigue though, but it is manageable.
0 -
CJSHARMA - That's great encouragement that you are not finding the 2nd round harder than the first. How many more rounds of this do you have ?
0 -
Ladies - I am the one that was in the cryotherapy study for Preventing neuropathy with Taxol - she hasn't published but the results are so promising she is doing 2 things:
1. having ALL her taxol patients do it now.
2. creating a new study to use ice bags instead of the elastic-gel gloves/boots to see if that also works well as it's much easier for patients to do.
SO! PLEASE ICE IF YOU CAN - I had ALMOST Neuropathy by the end of my taxol and I have literallly no lingering neuropathy. My fingernails did not lift/turn black/fall off - they just got a tiny bit tan.
Good luck!
0 -
I was okay this morning, but I'm really tired today. I do think today is Nadir. Hoping to bounce back tomorrow. I hate feeling this way because I'm not really sick, but I feel like I'm thinking in a fog. Had to do a demo for a customer, and sometimes had trouble coming up with words. I felt like an idiot. Fortunately I have an awesome coworker who assists me and he stepped in when I was faltering. Over all I think the demo was a smashing success. I also had no loss of appetite this time - taste remained unchanged. That's great, but if I feel sick, I get depressed and if I get depressed I eat. So I may just come out of this whole thing the size of a house.
Oh well. Hopefully I'll be back to normal tomorrow and can start really regulating my diet. I feel like a big fat cue ball. PDR - good to hear from you!
Numb - glad you had a good day! Sounds really nice! While I'm a bit whiny and down today, I still think my symptoms were easier this time. I had no taste change, and I think I'll be fine after today. *fingers crossed*
Princess - great info! I did a check on line and saw some options for gel gloves, etc. My nurse said that Taxol is a 3 hour bag! Holy cow. I'll be there half a day! Do you need to keep hands and feet cool for the whole time?
0 -
So my taxol, the taxol part was only 60 minutes (there were premeds) and after meds - it was weekly taxol which a lower dose than the one they do ever 2 weeks?
The researcher told me this - they feel the most important part is to start icing 15 minutes BEFORE the infusion (this is when it's important to have the nurse work with you on this so you time it properly) to have the blood already not being sent so much to the fingers/toes. Then you ice the whole taxol and 15 mintes AFTER it's over - so I had 2 sets of gloves/booties - at 45 minutes (15 mins pre-infusion icing and 30 minutes of icing) put on a COLD FRESH PAIR for the last 30 mins of taxol + 15 minutes of after infusion.
Feel free to pm me if anyone needs more info or links! I do feel (and so do the nurses and researchers at my MO's office) this makes a world of difference in levels of neuropathy.
Good luck!!
0 -
PRINCESS - What about freezing your extremities which could be trapping stray cancer cells and thus the chemo doesn't get through, any research done on that ? That's what I would be afraid of.
0 -
Hi All,
First time poster but have been lurking for the last couple of weeks! Was diagnosed in February and following 2 surgeries have now started AC Chemo last Wednesday. So far, so good first 4 days I wandered around with what felt like a moderate hangover. Not exactly pleasant but very managable. For me the worst part was waiting for the SE to hit - such a list of possibilities, all very daunting. I was a bag of nerves those first couple of days! Expecting the worst yet hoping for the best. I've managed to calm down a fair bit now.
This forum is invaluable. Best of luck to everybody on this journey and thanks for sharing your stories. x
0 -
GRACIETOO - Welcome to this forum. You are in the right place. The first week seems to be the hardest for everyone, but after that you can relax. Just saw you are from Ireland, so you are now more than welcome. I am from Ireland too. I see you are from Dublin. I lived in Dublin for 57 years, Navan Road and then Cabinteely. What hospital are you attending for your chemo ? I am at the Mater Private.
Has anyone else started their second round of chemo, besides CJ Sharma ?
0 -
Princess - I worry about what Numb said, too. I'm going to talk to my MO about this, though. Should be interesting. I'm less worried about it on my hands and feet than on my head.
Numb - How are you feeling? You're 3 weeks, so you go for round 2 next week, right?
Gracietoo - Welcome and I'm sorry you had to find us. I'm a week out of round 2 and the "fog" has lifted. I found round 2 easier as I knew more of what to expect.
I'm feeling good today. YAY! I'm even going to work out and then get my diet under control. I've been eating as if the world will end tomorrow.
0 -
CJSHARMA - I am feeling okay, but my mouth would still be dry but not as bad as it was. My throat tends to get sore from dryness but when I drink water it is fine. You asked what were we eating, well I have tended to just eat what I like for the last week, and would be afraid to weigh myself. My taste buds have not gone off. I am hoping to reign myself in soon as I don't want to be huge by the time I am finished. When I weighed myself the morning after chemo I was 5 lbs. heavier, but lost that in the following few days, I think it was fluid, because one night I was up every hour going to the loo and there was a lot each time. I am trying to eat more protein, e.g. eggs, proper dinners, meat, veg and potatoes. I also take Fybogel, an orange fibre drink at night and in the morning to keep my bowel moving. I also started to use my Nutribullet again but when I felt nauseous last week I got a turn off it, but hope to get back to that again. I heard that Pineapple is good for the mouth, so I am going to start eating that. I take a vitamn D and a Pharmaton multi vitamin and was told by the hospital that this is okay to take. So overall, good protein, meat and veg, fruit and multivitamins. Fish is good too, I had that yesterday.
I am mostly feeling fine, but have a slight runny nose today and I am just hoping I am not going to get a cold from my husband who is not better yet. It would be just my luck to have a cold next week and not be able to get round 2 on Fri. 29th April. I also have to have a camera down my throat on Tuesday. So I need to be in the peak of my health for all of this. I would be raging if I missed round 2 as I want to get this AC out of the way as fast as I can.
Glad to hear you are doing well. It is great.
0 -
Well, no one gets Mets to their fingers and toes? My MO doesn't allow cold-capping as frequently breast cancer goes to the brain (tho chemo doesn't cross the blood brain barrier - but that does mean the cells have been circulating up there) - I guess if one happens to be freely floating at that moment you're wearing the gloves? I had 4 treatments of AC prior to the taxol - based on the massive tumor reduction I got from AC, I'd think the "free floaters" in the blood system would be gone by then - and the blood is still circulating in your hands and feet, it's not like a tourniquet.
But to each his own, you certainly don't have to ice if you feel it's risky. I am a software engineer and worked thru chemo - if I were to lose my ability to type it would be a problematic for me.
0 -
Sfar - We do look pretty similar on paper. Both IIA, Stage 3, Her2+. My MO recommended TCHP from the start. She was very enthusiastic about including Perjeta, based on recent study results. There was no mention of insurance (United Health Care) issues, so I assume there weren't any. In case your MO wants to know, my MO is part of Texas Oncology, a state-wide multi-disciplinary group. As a transplant to Texas, instead of a native, I'm not usually so pro-Texas as everyone else here, but I do like this practice. Good luck.
0 -
NUMB - Thanks for the warm welcome! I've been attending Beaumont but Im currently having my Chemo in Drogheda as it's closer to where I live ( Bettystown in Meath) . My AC is dose dense - every 2 weeks for 2 months and then on to Taxol weekly for 3 months. Having my treatments closer to home makes it so much easier. I have a PICC line inserted so that needs weekly dressing changes and what with other miscellaneous hospital appointments - already I feel like Im constantly there! In order to stimulate white blood cells between treatment I have an injection of a drug called Lonquex - 24 hrs after each chemo. Is anyone else on here using this drug?
0 -
Hi all -
Mattie So glad that it is going okay - I was really anxious about starting my shots, did the Claritan that morning and am going to take that. I have another today and a CBC test. Oh, the lifestyle changes.
I'm Day8 today - feeling better - just all the weird things, like Numb said, nothing too horrifying.
Thanks CJ - I actually was probably not really that bad...but my mood really plummeted and I think that was a big part of it. And yes - don't expect the effects to be cumulative - I've seen this with a woman that I email, she did better for most of the rounds, had a down around round 4 but it was a lot of mood stuff.
I'm getting tingling pain in my scalp and noticing my hair is already starting to shed a bit...so I really have to work on ACCEPTANCE. That is my new quest. ACCEPTANCE.
Unlike CJ, I haven't told anyone at work yet - I keep trying but I can't get it out of my mouth...but I better get a move on because of the hair thingy...seems like most people its 14 days, the Cold Cap company said 20 days is the big shed. I really don't know what to expect. I have also still avoided ordering my back up wig....ACCEPTANCE. Avoidance. ACCEPTANCE.
CJ - I just love your wig - where did you get it? I might match you in brown Chemosister.
Someone said that Round 1 was an experiment in some ways and for me all the gastrointestinal stuff was a surprise and I didn't handle it well. Definitely ate the wrong foods on Day 1 and Day 2 and didn't take action during a bad night. I just HATE all this and feel so resistant and that makes it worse and then I isolate and that makes it worse. And then my hubby gets on my nerves...he actually changed my radio presets on my Xterra!!!! Imagine! (Now he is trying to figure out how to re-do).
Last night we went to the Lake at Sunset and i took some magical pictures of the moonscapes and these energy dancing lights were streaking around in the photos. Had fun looking at them via gmail with my daughter.
Well, I am off to work, wish you all good days.
0 -
GRACIETOO - My father was from Drogheda, I think it was Julianstown. I am not on dose dense probably because of my age. I am doing it every 3 weeks which gives me time to recover after each one. I think a lot of people here get a Nuelasta shot the day after chemo and this helps the blood, probably the same thing you are getting but under a different name. I don't get that because I can wait until my blood goes back to normal, having the extra week. I don't have the PICC line either and just wondering how I will fare out when I am on weekly Taxol, but I will cross that bridge when I come to it. At least you will be finished the AC quicker than me. Mine goes on until June.
0 -
I think I am getting the hubby's cold. I just hope it doesn't develop as bad as his did. I have taken to the bed and will stay here until I am better. I have told my husband not to come into my bedroom, to call me when the dinner is ready and I will go down and collect it and bring it up. I am trying to stay away from him now at all costs....hope it's not too late. Has anyone else had a cold since they started. Not sure what I should do, whether to go to my GP or wait it out.
0 -
Numb – I'm totally with you on the weighing myself! I logged my food into "My Fitness Pal" today, so I'm going to try to stay within the guidelines. I think I need more protein, too. I've been eating a lot of carbs, and that is so not helping. I have a Vitamix and I do make daily smoothies just to get more stuff in me, but I was drinking them for breakfast which did not fill me and made me hungrier later. I think if you look up any of the anti-inflammatory foods – those are what we should be eating more of.
Princess – I thank you for the info. I'm always looking to learn more!! I would be lost if I lost my ability to type as well. So I'm definitely going to look in to it more.
Gracietoo – Lonquex is a competitor to Neulasta which is common here in the States. I've been taking Neulasta and it helps your white blood cells recover more quickly. A tip, though – take Claritin the day you get the shot as it will help with any "growing pains". As the shot stimulates white blood cell growth, you can feel some aches in your bones.
Annie – glad you are back with us. My mood plummets, too. I hate, hate, hate being sick. And when I look in the mirror and see no hair – I see a big fat bald man – even though I'm not really manly looking. But the wig is nice. This is the wig I got - http://www.wigs.com/angelique-by-jon-renau.html. It has decent reviews although some say it frays easily. I guess I'll find out. I also ordered this one: http://www.wigs.com/hat-magic-lf-by-jon-renau.html so I have something to wear under my hats when I walk the dogs. J I'm so weird.
0 -
Bagger...thanks for replying. My mo doesn't seem very knowlegeable about Perjeta. It's worrisome. I called my BS today and she'll call me back. I know she'll be upset because she is extremely up to date on research and we had multiple discussions about it. I intend to have it one way or another. I should have pushed harder up front, but was intimidated. I have great insurance and I'm sure it will be fine. For one, if we knew the actual size of my tumor upfront, I would have qualified for Neoadjuvant.
0 -
They changes my reginment -- i am starting monday but with AC-T
0 -
Hi everyone,
I've been eating carbs like a fiend! I went to Taco Bell today after my blood draw and shot and munched between clients all afternoon. All I want to do is eat ... chips...
Well I had the full intention of telling my supervisor today and he really didn't want to know any details...it was quick and short, just wants a Doctor's note incase I am off. I started out by telling him I have a serious medical deal where I have to have treatments every three weeks over the next three months and he just jumped in...just get the note. <sigh> He is so unsupportive and unemotional. But then again, with the union, he can't even ask! I was willing to tell and talk about today though and that is good. I also tried to tell a coworker who I am close with. I've told her I have some medical stress going on a few times, and she doesn't really want to hear about it either. So different from CJ's work experience! But then this is me, I don't like talking about personal stuff at work.
You know what, during my dark days when I was isolating CJ gave me permission to just be yucky and not strong and that was so great. I want to extend that kind of support to everyone.
Well I tried to order a wig and the payment won't go through...I tried two cards and three times...
Blood draw - two misses - eeeegadsss...three pokes to get blood.
Oh, CJ...kiss to that beautiful head! I'm so sorry but guess what? It will pass! Loosing hair is such a tough tough part of this. I hate it for all of us. My head continues to get waves of slightly painful tingling. This is what I picked out - its human hair and hapless. I figured I'd go short so that I can catch up to the style quicker. And it looked good for hiding my eyebrows...(I have a no eyebrows phobia going on
) We're going to keep Cold Capping but with the degree of tingling I'm feeling, I'm gonna be ready next week. I wish I had found this style earlier, I would have gotten my hair cut and colored like this. Numb - get well quick. Its so hard to have to be so on guard about all things cold and flu.
0 -
NJNancy - that my treatment - how often are you getting the chemo? I'll be thinking of you Monday!
Annie - love that style! Sorry you're having challenges order it! How fun! Sorry your company is not supportive. I have a very small office, and I'm very lucky. And if we can not be whiney and unhappy here, where can we be? It's tough enough dealing with this, being happy and strong for our family and friends so they don't worry. We have to be able to be sad, upset and miserable here where others understand the fears and struggles.
0 -
sfar - that's so frustrating about Perjeeta. Mine got denied too and if they had done my treatment differently, I would have qualified I think. But I dunno. I'm gonna talk to my MO next time I see him and do the appeal I guess. its so weird that insurance companies can call the shots like this.
Njnancy - we're with you on Monday, I'm glad that its clear now.
CJ - here indeed!
0 -
Numb - i had a cold. I'm on AC every 3 weeks. I got the cold about day 7 after chemo. I wasn't worried as it felt like a normal cold. But day 11 I went to emergency with a fever. My blood count was so low that I stayed three nights there getting antibiotics and Neupogen (which I've since figured out is like the neulasta) the docs can't tell if the fever was from a virus, like the cold I had, or if it was infection. So they treat you as if it's an infection. Regardless, I'm going to be so diligent in washing hands and staying away from sick people. Being in the oncology ward in hospital is very depressing. Very. And I was so unwell with migraine, mouth sores, back aches, painful scalp and chills. Now I'm just recovering from the diarrhea the antibiotics gave me. It's not worth it. So yes, stay away from hubby and keep a close eye on your thermometer. Also, don't take Advil or Tylenol as it will mask the fever. Now I get to start round 2 tomorrow. Are we having fun yet?!
0 -
1UNIBOOB1 - thanks for that reply. Unfortunately I did end up getting my husband's cold and my temperature went over 38 degrees so I was whipped into hospital last night. My neutrophils (white cells) were very low so I was on antibiotics and fluids all night. Feel much better today. My MO said she would have to give me the Neulasta shot after the next chemo to make sure my white cells don't go this low again. Not getting out today and could be here until Monday. I hate this cancer.
Best of luck today.
ANNIE - thanks for the good vibes, love that wig. I am day 15 now and no sign of my hair loosening. I wish it would just go because I want to get my wig cut and the hairdresser said I have to be bald first.
0 -
Oh Uniboob that sounds horrible! I'm so sorry you had to go through that. Were you getting the Nueslasta shot and if not, will you moving forward? Goodness! Hugs. I hope round 2 is better in so many ways.
Numb - you are not having a good time with this either. I'm sorry. Glad you feel better today, but hope you can get out soon. Glad you are getting the shot after chemo. I wish it was common place - it seems to make a huge difference.
![:\](https://community.breastcancer.org/resources/emoji/confused.png ":\")
Good luck to everyone! I hope this weekend is a good one. I'm finally getting my echo cardiogram Saturday (the only time they had available - whatever, at least I'm not missing work). Last night I went to a award ceremony for Second Harvest Food Bank. My company did a food drive and we were invited. It was nice, but it's scary to think that here in the Bay Area we have 100,000 people who go hungry on a regular basis and it's worse now than it was last year because housing prices and rents have sky rocketed.
0
