Starting Chemo April 2016
Comments
-
Greetings everyone-I'm new to this forum and this is my first post here.
Starting chemo April 25 week (they will give me exact date this week.) It came about quickly as a result of a restest via FISH for HER2, which turned out to be positive, though IHC tests had showed negative at biopsy and surgery. I am now triple positive. That result was delivered this past Friday afternoon at 5:00 pm, and along with the news of the HER2 positive was the news that I would be starting chemo and targeted drugs as soon as I was in my 6th week post bilateral BMX (which begins April 25.) I meet in person with the MO on Wed. and drug details will be finalized then.
I know some of the drugs will be at least Herceptin and one taxane, but the rest haven't been determined yet, so right now I am still in research mode. In my particular situation (post-surgery, triple positive) there doesn't seem to be a standard protocol for my size of tumor , with lack of node involvement, so we shall see. Questions I have are whether to add Perjeta (another HER2 targeted drub), and /or carboplatin or some additional chemo like AC for someone like me: post surgery , post diagnosis 2 months.
Generally I research and learn a lot about each phase of this journey, but this has hit me rather fast and rather out of left field...so I am trying to get up to speed. I'm also feeling a lot more emotionally overwhelmed than I expected. I think it is more that the HER 2 diagnosis was missed for almost 2 months so I am maybe more nervous about the lack of chemo to date than the actual upcoming chemo.
Though I can say for sure that I am not looking forward to it. I have lots of GI issues already. Irritable bowel syndrome requires me to eat a very specific diet called Low Fodmap, and if I am not incredibly careful, I get diarrhea, etc...but I can also tend to constipation if the diet is followed by I forget my probiotic, etc. So GI side effects (listed on all of the drugs they are looking at, especially Hercepting and Perjet) do worry me.
Truly appreciate everyone's insights and suggestions for how to cope, and will be reading through them with diligence. Hope everyone does as well as possible this week! Nice to meet all of you--even though I didn't expect to be here!
0 -
ZOZIANA - Welcome to the group. I can't answer any of your questions as I am triple negative and the chemo is my only option for treatment. I guess the best person to discuss these worries with would be your MO on Wednesday, as she/he will have all the answers. I would imagine that the lack of chemo today would not be a problem at this stage as the minute you start the chemo it will zap anything that is there. This is a very emotional journey but I found when I started the treatment I settled down a lot. Discuss all your worries with your MO and maybe someone else on this forum can tell you more about the hormonal treatments.
0 -
Thanks for the food tips ladies!
Zoziana - I'm also triple positive, so sorry you're joining the club, but welcome. My regimen includes both Herceptin and Perjeta (TCHP). Insurance didn't want to pay for Perjeta initially, but my MO was able to persuade them to approve it. I had my first treatment a week ago today. I was very nervous about the gastrointestinal SEs as well, so tried my best to not aggravate it with my diet - avoiding fried foods and too much fiber. I did end up with some diarrhea on day 3 and overnight on night 6. Not pleasant, but it was tolerable and immodium helped. My doc said if it got too bad along the way we could stop the perjeta, as even a few doses would still be helpful. I know the Herceptin can also be hard on the heart for some, so that's why she went with the Taxotere/Carboplatin rather than one containing Adriamycin, which can also be hard on the heart...so she didn't want to double up on both. Feel free to reach out if you have questions since I am a couple weeks ahead of you! Good luck on the 26th. Oh - theres also a triple positive board thato pretty helpful too!
0 -
Annie - hoping you're feeling better today!
Bagger - yeah, my smoothies sound like that. I can eat turkey burgers but hamburgers sit in my stomach like a brick. And I like beef.
Zoziana - Ugh! Sorry you are here, but glad you found us!! I'm local to you, so I'm curious as to whom you are going for treatment. I'm at PAMF and I like them a lot. I had one biopsy come back inconclusive, but the second came back negative for HER2. Treatment seems to be working, but I do wonder. I do get stress induced IBS, but it's not something I deal with on a regular basis. I think for you, this will be a trial of what works and does not unfortunately. For me, the over the counter stuff for the lower GI is working and the anti-nausea drugs are working well, too. Good luck to you. Hugs.
Feeling okay today. I'll get in a workout - 21 Day Fix Upper - it's easier but what I need this week. Most likely I'll go in to the office simply because it's HOT here (84 degrees) and I don't have air conditioning.
0 -
Zoziana- Welcome & sorry you are here. I'm another triple negative, so not much help.
T minus one day til chemo. My daughter woke up & puked. So I am trying to help her but keep my distance! Lots of hand washing. I am also scheduled to teach my last kickboxing class for a while. 😕 I've got a bunch of people coming to support me. Husband will hang with the sick child.
Since I'm going in blind, I'm reading the chemo lists on what to buy. Gonna order a wig today.
0 -
Twaz - oh goodness, sorry you're daughter is sick! That's no fun. Glad you have support and hubby can care for your sick baby. Don't go crazy on the lists. Just get the bare minimum. You won't need everything, and you can buy as you need. I would get stool softener, Pepcid AC, thermometer if you don't have a reliable one, and a good moisturizer. Have fun wig shopping.
0 -
zodiana,
I can almost mimic exactly what pdr chick is saying! the only difference is that there was no fight from my insurance on my perjeta. Or if there was my mo never told me. My mo also skipped the adrimyacin drug because of heart issues coupled with herceptin.
My symptoms mimic yours exactly, pdr! Saturday night was a long one! My stomach is finally feeling better. Now mouth sores have taken center stage. I feel like I did this to myself tho...I didn't rinse often enough!
I truly feel, for triple positive that the tchp regimen is our best shot at hitting it the first time which is what we need to do! I get excited when I read the research on the drugs together and pray that this will work. I know that perjeta is in a trial used adjuvant ly, but think of how they ended up using herceptin in the first trial for early stages. We are on the edge of exciting drugs and hopefully research continues to go into these immutherapies (sp?)
Jeri Ann
0 -
Best of luck tomorrow -TWAS . My hubby is dying with a cold since last Wednesday. In fact I have never seen him so sick. He has been sleeping in the spare room for fear of passing on any germs to me, but quite honestly I am around him all day and so far have not picked up anything from him........can't believe it !!
0 -
Good Luck Twaz!!! Wig shopping is fun....and I took my hubs with me. He thought he would like me as a blonde, but then realized I look anemic with light hair!
Will be sending you good vibes for tomorrow.
0 -
Question - antiemetics - what is everyone receiving? The pharmacist just called me to tell me I am receiving Zofran (odansetron) and they want to add Emend as well. However, Emend isn't proven to be definitely safe in pregnancy (animal trials are fine though). Since I'm foregoing steroids, I'm thinking I had at least better go with Emend as well as Zofran. Unfortunately, I am a puker (sorry if TMI), and once I get started I usually don't stop until hospitalized.
0 -
hikerchic- I was so sick with my daughter that they put me on zofran when I was pregnant. She was born normal & healthy. I guess now I know z works for me
0 -
I'm taking Metoclopramide, I like it works quickly and no constipation (for me) This is after chemo, not during.
0 -
Jeri Ann - we are lucky in that if we had to get this, we got it now as the research is really blossoming and going places!!
Numb - Hope your hubby feels better soon! And that you stay well.
Hiker - I'm take Zofran with Compazine (which looks as if it may cause issues in newborns if you use in your later months of pregnancy) as a back up. If you are a puker, you'll want to stay on top of everything, but I'm sure you know that.
0 -
Twaz ~ I was on Zofran with my son and daughter. Actually had to have IV with my son in 1999 when it was new on the market. They called it "liquid gold" at that time. It has worked well for me, but I guess the MO and pharmacist are worried because I did have hyperemesis to such a degree with my son and daughter; however, the odd thing is with this baby (a girl also), I haven't had to take Zofran once. Aside from low-grade nausea, which is now gone in the second trimester, I have been fine. Do believe it has a lot to do with the husband. The first one wasn't a very nice person to put it mildly, and this one is entirely different!
VSB ~ I will check on metoclopramide.
CJ ~ Yes, things are a little hinky given the pregnancy. That is why I don't get the steroid boost and compazine. I'm going to continue to push fluids, healthy ones although I could really use a shot of Buffalo Trace bourbon sometimes...LOL....and hope for the best!
0 -
Hiker - Glad this one is easier and the hubby is better. I get what you mean about the stress from an unsupportive mate. I had that with my daughter. When are you due? I hope Zofran does the trick. Man, that has to be scary, but your doctors know what to do.
0 -
Day three, went to bed with beginnings of mild bone pain, did not keep me awake but I'm sore today. I'm taking the Claritin and Aleve so I guess it could be worse. I took anti nausea sporadically over the weekend, but now I know an increase in heartburn means take one immediately. Next round I'll take it regularly, it works so quickly it's not worth even waiting. Other than that I feel pretty good. Wish sE were more predictable, even day to day, you know day one you might get sick, day 2 you might get bone pain... But having everyday different bothers me. I need a plan!
0 -
JGAB - I found the mouthwashes very harsh that I was recommended to take, but today I got Biotene mouthwash and it is much kinder to the skin and has a moisturizing effect. I will be using that from now on.
0 -
Got my chemo supplies list made. Sounds like I'm going to be purchasing most of the personal care items at the store between all of the mouth, stomach and butt problems I might be facing. Good times....
On top of all of this and my daughter being sick today, I think one of my dogs might have the big C. Either that or he is nearing the end. So now we are watching him to see if we need to make "the decision." He's had a good life. Was a shelter dog and has been with us 12 years.
0 -
VSB - yes, the symptoms come and go. It really is tough to know what to expect. I think part of the answer is medicating regardless. Think of it as preventative not curative. Take the anti-nausea meds when you get up so that you don't have it. The bone pain - well, take the claritin - but it can only do so much. I'll bet that one gets more tolerable as we go as it's becomes more familiar.
TWaz - goodness, you are having a time! Hope your daughter feels better soon! I'm sorry to hear about your dog. It's never easy to lose a family member. That is a nice life for a dog, and thank you for rescuing him! Good luck tomorrow and through the rest of the week. Thinking of you.
Annie - hope you're doing well! I'm worried about you!
0 -
I just started TAC on 4/6/16. I had a rough first week, but am doing much better. My cycles are 21 days and for 6 treatments total. This is all tough but feel like we can do it!
0 -
Welcome -BLOM MOM74 the first week seems to be the hardest, but we have to do it and hopefully the journey is ;made easier by sharing our experiences.
CJSHARMA - Hope your 6th day on 2nd round is not too bad this time.
0 -
Hi Blommom! Welcome, but sorry you had to find us. Glad you are finding them doable.
Numb - I was very tired yesterday. I'm afraid I have 2 more days of that.
![:\](https://community.breastcancer.org/resources/emoji/confused.png ":\")
Oh well. I did promise everyone I would be in the office today. I guess I can leave at noon if it's bad. I really need to work my schedule around so the M-W after chemo are lighter.Thinking of you, TWaz! Hope it goes smoothly for you today.
0 -
TWAS - Hope you had a good day.
KRISTI525 - Best of luck tomorrow, hope it all goes well for you.
CJSHARMA - how are you now, were you tired today ?
ANNIE - Hope you are feeling better.
0 -
Hi Numb - yeah, I'm tired today, but it's not as bad. I also haven't lost my sense of taste, yet, which is interesting. Last time Wednesday was the toughest, so we'll see how I do tomorrow. I certainly feel better than I did yesterday.
0 -
Yea, Christine, I got my chemo on a Friday and I found that Wednesday was the toughest too. So if you got your second round on a Thursday you should have had your worst day yesterday, but I suppose it doesn't follow that each session will have the same pattern. You are doing great though. I am hoping to do better the next time. I feel almost back to normal now, except a bit more tired but I can cope with that. It was the heart thing that knocked me for six last week, but that symptom has disappeared now.
0 -
Sorry, I've been A WALL...in the Nadir dumbs I think...isolating...but this afternoon I started recovering. Thinking of you all.
A
0 -
I'm four days out after Abraxane and immunotherapy/placebo. Since I'm on what might be an immunotherapy drug, I didn't get the pretreatment steroid boost. I think I pushed too hard the day after and was really, really fatigued the next two days. Day three and today have been better and I feel more cheerful.
Nausea is non-existent with mix of phenegran and Zofran. I think I'll try out the scopolamine patch next round so I don't have to wake up to take meds.
I'm getting that yucky loss of taste. I've switched to chopsticks & nonmetal flatware. Also using sugar free gum to keep mouth hydrated. Biotene mouth spray also works well.
Pain in long bones of the leg started Monday and has now moved up into the upper leg/quad area. I'm managing with extra-strength Tylenol during the day. I'm going to check on other options as well.
Hang in there guys! We are more than halfway thru the month
0 -
I think we all get some sort of side effect but the beauty is that it is manageable and we do come out the other side after the first week. I really thought that I would not be able to do a second round when I was feeling miserable but now I know I can. Wishing you all a good day today.
0 -
Bagger
I see that you are getting Herceptin and Perjeta after surgery. Did you have any problems getting Perjeta approved and did your ocologist recommend it or did you have to push for it. I am having difficulties with my MO about it and just wondered about your experience. I am due to begin chemo tomorrow without it, but figure I can always push for Round 2.
Sue
0 -
So, this is weird. Everything I've read say that the effects are cumulative. That each round will be slighter harder - fatigue wise. But I'm day 7 round 2, and I had one bad day - Monday. Yesterday and so far today look good. Not the fog lifting sunrise that I got on Thursday last time, but every doable and no real issues - not even change of taste. Last time Monday was fine, and Tuesday and Wednesday were horrible. I'll not look a gift horse in the mouth, but seriously, I'm happy. I'll probably get slammed next time, eh?
Numb - hopefully the heart thing will be fine on round 2. Glad you get another week to recover fully!
Annie - so sorry to hear you are having such a tough time. Definitely document your reactions and tell your MO - there should be ways to counter some of that. It sucks, but it shouldn't have to suck THAT much. Hugs.
Mattie - is the pain from the drugs or the Nuelasta? I haven't had bone pain, but I have had times when it feels like my ankle or knee are messed up. Someone suggested bold flavors for loss of taste. Like vinegar, etc. I've been on a Greek kick.
SFAR - not Bagger - but I did hear of others having challenges getting Perjeta approved. You may need to call you insurance company and push that up that ladder. Your doctor should, if he/she feels strongly enough, but we can do it also.
Happy Hump Day all!!
0
