Taxotere, Carboplatin and Herceptin
Comments
-
YAY, grandmaV!!!! i'm so happy that the first one is behind you now.0
-
GrandmaV, You will be done with this before you know it! Time really does go quickly.
I always felt fine the first few days after treatment, but two days after I stopped taking dexamethasone, I felt bad. That was consistent through my six treatments. I think others probably have already said to anticipate SE's and treat them. After the second treatment I did not wait to feel queasy before I took my anti nausea, I just took it and that really helped. My oncologist also warned me before I started chemo to have stool softners and immodium on hand, because you will go from one extreme to the other. The anti-nausea meds will constipate you, but the chemo will make you go the other way. Immodium works for cramping too.
I hope you do well and have minimum SEs!
0 -
Hello everyone. Starting TCH on 12/1/11. Post unilateral right mastectomy, two bx. which showed DCIS with a 4 cm lump pre-op, we all knew that didn't make sense; dx. changed post surgery to IDC, 2.5 cm, grade 3, Stage IIA, 0/8 nodes, ER+/PR-, Her2/neu 3+ positive. BRCA 1&2 negative.
Scary journey so far. Am a certified nurse midwife, so have the blessing/curse of knowing way too much sometimes. Very disappointed in my own medical community with the lack of sensitivity and communication between providers, which doesn't work well way too often! Felt like I had to be a "good patient" since everyone knows me, am quickly learning no one is going to take care of me but me. Anyhow.....the whole thing is just so horrifying. I have coped by researching and learning all I can. Problem is; it's great in the abstract, but it's about to really happen.
Hoping to work between chemo tx. Financially critical. Everyone seems to have had differences in which are the "bad days" following each tx. Can you predict a pattern after the first one? Going to do that while still off from surgery.Have been very interested to read everyone's suggestions and helpful tips. Even my surgeon has said, "You have such great ideas!" Had to admit they weren't exactly original:)
Interested in knowing more about dietary supplements. How do you find out pretreatment what is ok to take and what's not? Did most people gain or lose weight? Just lost 15 lbs over past year....frustrated to lose all that effort. Going to research cold caps and icing the nails too. Concerned about nausea. I am very drug sensitive, can't imagine how I'm going to be conscious with all the pre-tx. meds in me, much less the side effects from the chemo.
Plastic surgeon didn't consider me a candidate for immediate reconstruction due to all the pre-op dx. confusion. Now he doesn't want to do it till chemo is done. I am 48, BTW. Ideas for "looking normal" in public until we get there? Ordered prosthetic and mastectomy bras. Just feel so "damaged."My DH is very sweet and helpful, says he just wants me to be here with him, but I am wondering if there is ever going to be a sexual relationship resumed. Hasn't happened since dx. Anyone else have emotional issues around this?
Keep reading less than encouraging numbers about HER+ tumors, and wondering just how much extra time I'm buying by putting myself through this, reoccurence eventually seems pretty much inevitable.Just overwhelmed...........
0 -
darlam I get terrible nausea with general anesthesia. I assumed I would be puking all over the place on chemo. Other than the Emmend they had me take the day of and a few days after I never took any other nausea drugs. Still have every pill. Even if you do get nausea there is no reason these days for anyone to be nauseous on chemo. If the drugs they give you don't work then ask for others. They may be more expensive but there are others that work.
The first tx IMO was the hardest to mange the SE because you didn't know which ones you would get. I got really bad constipation and heartburn. TX2 I knew to start taking the Metamucil the night of chemo and 3 days after. We also found the right heartburn med too by TX2. If you get Nuelasta I found the bone pain was the worst the first time. After that I did use some Aleve but the pain wasn't as bad as the 1st. This is very typical.
You should get a pretty good idea what will happen after the 1st TX. Things will just last a bit longer. Things like nail issues and stiffness, if you get it might show up later. Everyone is different. You won't get all the SE. I never got the flu like fatique but I had really bad nail issue… that still haven't completely resolved yet. (Nail issues like I had are rare ).
I too was in great shape going into all this. I put on about 12-14 lbs at one point but 8 of it was fluid. Some of the weight gain is from inactivity. Some of it can be from the foods you might have to eat (too many carbs). My onc told me I would gain 8lbs. She said she didn't know why but everyone seems to gain at least 8. BTW I'm pretty much back to my pre-treatment weight and have been since this summer. It comes off if you go back to your old habits of exercise and diet.
I did take Acetyl-L-Carnitine for nueropathy once it started. I still have it in my left foot but it's slowly getting better. I was starting to get some tingling in my fingers on chemo but once I started the Acetyl-L-Carnitine it never happended again. Just had the issue with my left heel but not too bad.
Hope your SE are minimal. Like folks said drink lots of water and try to exercise/walk every day.
0 -
Dariam So sorry you are here but glad you found us. I worked throughout chemo and found that I had to take a few days off in cycle 3-6 because the fatigue was building up by that point. By the way, I'm a social worker in a hospital ER. I found that the SEs in cycle 1 were pretty much the same throughout for me. For me, the nausea was well controlled with compazine and amounted to an annoying gnawing feeling in my stomach for several days but was manageable. I always had a "steroid crash" the day after the steroids ended in week one of each cycle which meant that I was very tired for a day or two (but I still worked). GI problems were my worst SE but I quickly figured out how to manage them. I took a couple of extended weekends in the last couple of cycles when I felt very fatigued but otherwise I worked the whole time.
I was very careful to avoid turning to comfort foods during chemo for fear of weight gain. I continued to eat a healthy diet. Toward the end of chemo, I noticed gradual weight gain and ended up +12 pounds. The amazing women here assured me it was fluid from the steroids and would eventually drop off and they were absolutely right. It took 6-8 weeks but my weight dropped back to normal after chemo.
I know it's overwhelming but please don't view recurrence as inevitable. Herceptin has really changed everything for us and our prognosis is dramatically improved.
Re: the sexual relationship, all of this surgery and treatment really takes a toll. My DH has been very understanding and supportive as well (I'm 42) but it's really tough. I think it's important to keep communicating about it. By the way, there is a discussion board for women in their 40's and everyone is very open to discussing these (and other) issues if you are interested.
I took a supplement to prevent long term SEs and I always got approval from my MO (she was always fine with it). Mainly I took Acetyl L Carnitine to prevent neuropathy.
There is no shortage of information here-we'll all help you through. Wishing you all the best!
0 -
darlam,I am older than you and no sex for me because of pain from no estrogen. If you feel like having sex then you may have to initiate it yourself because hubby may think you would rather not. If you don't feel like it then just talk about how you are feeling. It hurts me to be pushed against but I had a lumpectomy but wish I had a double mastectomy because I have a lump in the breast that was not affected. I will have my port indefinitely the onc said but I don't think I am willing to go through chemo again. I am sure I would not go through radiation again and I didn't want to the first time but they insisted it had to be done. I have decided it is my body and I will do what my gut tells me from now on.
I had surgery in June 2008 and afterward chemo and radiation. I am working and feel okay but I feel like it is only a matter of time it will be back. Some women go for years without any more cancer so it is not hopeless. I know it is overwhelming. I have found everyone has different side effects. I lost weight but then I was losing weight before I was diag. and I believe it was from cancer because I was not trying. some gain weight because of the medicine they take plus the lack of estrogen. If you are not sick then you may gain but it is not a given if you eat healthy but that takes time. The taste in your mouth makes it hard to eat sometimes but not everyone has this side effect and seem to want fatty foods more. I was too sick the most of the time so I didn't eat much. I still have trouble with my blood but I am thinking it is because of my age and my arthritis/autoimmune problems. I think I have convinced the onc of this too.
Hang in there. There is new research all the time. Stay on this board and vent and learn form others. It was a good lifeline for me. You might want to read over some of the past posts too.
Carolyn
0 -
Darla, so sorry you are going rough this but we certainly will be there with you through it. Though not an andvanced nurse, I am a nurse. I found that I needed to invite them to talk "down" to me. I think they are concerned that they will insult us with explaining things too much. I just say I am not an oncology nurse so explain it like you would to anyone else. But if you know them personally, that I am sure that is tougher. They may talk to you matter of fact because they are uncomfortable themselves.
Coping with educating yourself is a beautiful way to get through this. You have the ability to be proactive and involved. Keep it up. But the emotional stuff is there, too. If you don't have access or time for a local group, there are a lot of threads on here for mastectomy and HER+. You find the group that lifts you and makes you feel heard. Because they have been there. The long term outcomes of HER+ are old and scary. Herceptin has changed everything. We have a very good chance of beating this.
I too lost 25 lbs right before DX. I found I lost about 5lbs with each tx due to my GI issues/appetite but the 7 days leading up to the next tx, I gained them back (called it my hungry week LOL) I am now done with #6 and find myself only a 3 lbs up and some of that may be fluid still. You will find taste issues, fluid retention and the big D may affect your weight. Many on here still exercise and you can watch the quality of your food as you go. I craved carbs which kills me and my scale every time. And I worked through chemo as many others did. You may have some tough days but it can be done. By hearing others and myself, the SE usually start by the end of day 2 after TCH and the worst lasts about 2 days. For me, I had tx on Wednesday's. I felt bad by Friday night and turned the corner by Sunday eve. I didn't feel great Monday/ Tuesday but I could function. But each tx can hit you differently and there can be a cumulative effect with later tx.
Good luck with your journey.0 -
darlam forgot to mention I was 49 when I went through all this so essentially the same age as you. (turned 49+1 2 weeks after chemo ended). Intercourse was painful for a bit. If you don't use it you can l lose it so to speak and during chemo and after surgery our sex life wasn't the usual pace. Anyway I did go through chemopause. I used Replens every other day for about a month then switched to 2 times a week per my NP recommendation. I got my mojo back. It takes some time and commitment but if you want it it can come back. If it's that painful then you need to talk with your gyno. Just don't rush it but ideally if you can stay sexually active to some degree you probably will have less issues.0
-
Darlam,
You do not have to gain weight during chemo. That is up to each individual. I didn't gain any "real" weight at all. (Meaning some days you get on the scale and see you've gained but in reality it is just fluid.)
Because this was one of the few areas I felt some "control" (ha) over....I monitored it to ensure I was doing everything I could to NOT gain weight. Here's what I did, maybe it will help you.
1. Signed up at fitday.com (free) to track every calorie I put into my mouth. (The benefit was twofold. First, it breaks down what you eat into nutritional categories, so you can see where you might have a vitamin/mineral deficit. Second, it gave me ASSURANCE when the scale went up 5 pounds that the weight wasn't "real.")
There are 3500 calories in a pound, I could look at my caloric intake and KNOW without a doubt the weight wasn't real. Not once during chemo did I feel like I was getting real "fat" because I knew the bloating and fluctuating weight was not real and trusted my body to resolve it all once chemo was over.
2. Ask your Onc for a referral to a nutritionist that specializes in cancer. I did and learned A LOT! Like you need copious amounts of protein to help your body repair damage caused by the chemo. They will also be able to tell you how many calories you should get a day to maintain your current weight (this goes up and there is a formula for it when on chemo).
3. EXERCISE!! No matter how crappy and tired you feel. Exercise every single day. The benefit is also twofold. First, it will give you energy. I know it seems counter-intuitive, and many days I literally had to drag my butt into the gym or onto the cross trainer, but afterward, almost every single time, I actually felt better and had more energy for the rest of the day. Second, it'll help keep your cardiovascular system fit, as well as reduce bone/muscle loss caused by chemo.
I started tx with a group of ladies on the same protocol. They took the "rest and eat whatever whenever you want" approach and gained weight. And you almost never feel like exercising so they didn't do it consistently. By the end of tx, they were winded walking up a flight of stairs.
I was certainly weaker, no doubt, but I could work out in the am, and then walk all day (like at a bazaar) without getting tired a week out of TC. I also never had any "down" time...time laying in bed or on the couch .....Some of them still haven't built their strength back up. It's much easier to maintain than to lose and try to get back.
There are a few books and lots of research about nutrition and exercise during chemo....right now I can't remember the titles, but you can certainly google it. Lance Armstrong wrote the foreward to the Harvard study/book.
You can't control your cancer. You CAN control your response to it. If you don't want to gain weight, you don't have to. Up to you:)
My best wishes are with you and your family as this journey begins.
Much Love.
t
0 -
Lago While we are on the subject...I'm 42 and still have the issue of painful intercourse-it's terrible:( I'm not familiar with Replens but all the typical stuff i.e. KY is useless. Is Replens a lot better? By the way, does anyone know if this issue is a result of chemo, rapidly-induced menopause, or both? It's not improving at all and I'm 5 1/2 months PFC...This is one thing I definitely wasn't prepared for!0
-
Darlam - I wanted to echo what Dragonfly said about recurrence not being a given. Being triple positive we get all the systemic treatments - chemo, targeted (herceptin) and hormonal. It's tough for sure at times but it improves our odds tremendously over what we had before. You might want to check out cancermath.net - LINK - and their therapy calculator. In the therapy calculator, note TCH is a third generation chemo, it calculates mortality and DOESN"T include herceptin so our 'real' statistical estimate for mortality is hopefully even lower since we do have herceptin. Glad you found this site. I kept a journal of symptoms each cycle and I found that they changed a bit each time. My easiest was number 2. Will you get the neulasta shot?0
-
darlam, I am using the Penguin Cold Caps. I have completed 4 of 6 TCH treatments and have a full head of hair. This is one SE you do NOT have to go through. Since I look the same, it has helped me get through treatment a little easier. People at work say they forget I am even going through chemo, because I don't look "sick". As far as buying extra time with Herceptin, I felt just as you do, but my onc at Mayo's told me that since the arrival of Herceptin, those of us who are Her2+ actually end up with slightly better odds than those who are Her2-. I am pretty drug sensitive as well, but I am doing pretty well with Zofran and Compazine for nausea. I would say you will probably feel the same after each treatment except whatever SE you have will last a little longer each time.
Good Luck, Laura
0 -
Laura I do believe you are correct that being HER2+ and hormone negative gives you better odds than being triple negative.
But those of us that are triple positive might have the same odds as someone who is just horomone positive IF of course we are all given Herceptin treatment. I don't believe triple postive had better odds if given Herceptin over just ER+/PR+ women. Still looking for published info on that.
0 -
dragonfly it takes time and work. I use Replens as mentioned and Astroglide. (I love that name "Astroglide". It must be the stuff Jan & George Jetson used. Just can hear the Astro saying "Rastroglide"
) Intercourse was painful at one point. Like stinging painful. Replens did help me. Also like I said use it or lose. You might try getting a vibrator. Stimulate the blood flow down there too. My NP said it was partly due to the fact that when in treatment we tend to note be sexually active along with the chemopause. Most women experience vaginal dryness after menopause but they aren't necessarily inactive like we've been. This is something you should discuss with your onc. My chemo binder had a complete page discussing sexual issues. Replens is for vaginal dryness and is used differently than the lubricants. Check out the label. Astroglide Iused during intercourse etc.
0 -
Dear OMAZ - The suggestion to keep a diary during treatment of side effects is a very good one. Knowing my wife, I will probably have to keep the diary for her but I may have to make a business trip. I hope she will keep the diary for herself or else we can work out a system for me to keep it - maybe even in a spreadsheet which is even better because I can e-mail it to the doctors. The cancer calculator is interesting but without TCH and Herceptin in the calculator it is hard to evaluate. The more useful statistics from the calculator are the reoccurence risks and survival rates (or the converse the mortality rates) without treatment.
0 -
BlairK I kept a diary too. It was just a word doc. Every time I had a side effect I wrote it down right away so I would forget… because you will. You might consider putting down what day after chemo it started and when it ended. When I saw my onc I would print out the sheet so I didn't forget anything. It really makes things so easy.0
-
Lago I'm afraid my MO would not be that helpful (I brought up sexual SEs during chemo around the same time I was having bad nail issues and got, "talk to your GYN...and you might lose your nails") She's a good clinician but not my favorite human being. Anyway, you are a source of endless suggestions. I don't know what we'll do if you find full-time employment and can't post here as often (please tell prospective employers that you have a part-time committment:) I'll check out both Replens and Astroglide. Soooooo happy to have some new ideas.0
-
I gotta say I was just in the grocery store and spied the Replens as I was looking at chewable calcium - I thought of you guys - seems wrong, right? Then I started laughing!
0 -
Darlam - Sorry I missed that you were PR-, but I think you get everything anyway.
SpecialK - Too funny about the grocery store!!
Lago - I think I also remember reading somewhere that triple positive treatment that includes herceptin has recurrence was similar to ER+PR+HER2- as you mentioned.
BlairK - I think from the results of the BCIRG006 trial (LINK) TCH is similar to ACTH "statistically". I have read that herceptin provides up to a 50% reduction in risk, so if with chemo and hormone therapy your risk of recurrence is 20%, herceptin could reduce it to 10%, theoretically. Have you read the book 'The Emperer of all Maladies" ? It is an excellent book and really helped me understand the nature of cancer. Very well written too!
0 -
So you guys haven't notice I've been posting a lot less? Guess you are doing just fine without me. Seems Omaz is picking up the slack just fine.
I landed a full-time freelance gig 2.5 weeks ago. Hopefully it will last till the end of the year. My life has been crazy these past 2.5 weeks with PT 2times a week at 7am then work 8:30/9-5. Also still applying for jobs, doctors appointments. I even had an interview on Monday and another telephone interview this Monday.
This past week I had another cold too but better now. I'm exhausted just typing all this
0 -
Lago I'm going to start calling you superwoman!!! Are there additional drugs that you are taking that we don't know about-Ha Ha! Congrats on the freelance job. Seriously, take care of yourself and don't wear yourself out.0
-
Hi Everyone- Haven't been on for a while. Tried to scan to catch up. Back to work full time- changed jobs- have a long commute now but am enjoying the new job alot. Glad to see/hear so many of you doing well- my lifeline you all were this winter/spring for sure.
Hard to believe it's been 5 months since last TCH? Still on Herceptin & Arimidex. Tire easily- but make it through the day pretty well I think- end of the work week I do get tired.
I hear what Lago is saying- I had this one chemo nurse who had answers to EVERY weird problem I had. Sincerely she was great (alot like Lago has been for so many of us).The nurse had the mojo recommendations that Lago reference.
I miss you all- think of you often. It's hard to keep up on here & work too. It's getting close to that 1 year cancerversary for many of us on here- glad for this board.
My short hair is wild- curls in some spots- sticks straight up in others- will try to post a new photo or change my avatar. Gotta get going- my daughter who's in the 11th grade has a marching band performance- gotta get there.
Yall are the best- take care- nice to see you all and my triple pals Dragonfly & SpecialK too.
It really does get better- chemo is tough- but it's possible one step and one day at a time.
Lisa
0 -
LisaGH - It is hard to believe it's been 5 months, I remember when you guys started! Congrts on your new job. I love to listen to audiobooks during my commute, has been a lifesaver.0
-
Waving to LisaGH. Last year at this time I think my hair was still falling out.
FYI the only drug I'm on is Anstrozole. I do take a lot of supplements but non of them are energy boosters. Remember I don't have kids so that makes it much easier for me. I have no idea how you women work full-time and have kids.
0 -
Hi Darlam,
I am also a CNM. Completed one cycle of TCH. I am planning on working 1/2 time. Chemo Wed, work night call Wed night (you feel good and can't sleep any way from the steroid), office Friday day. I'm lucky to be able to cut back from full time. All I can say is call your Onc right away if the nausea meds don't work. I suffered Friday night thru Sunday aft, because I hadn't thrown up even though I felt so nauseaus I laid in bed miserable all weekend. When I finally called Sunday, she gave me different meds that really helped. Good luck.
To everyone,
Are you getting Herception every week in between the TCH every 3 weeks? I guess this is the most common plan, but I was hoping I could just get the larger dose of herception with the TC and skip the in between doses. My Onc says I can do it either way.
Thanks, AbqTiger0 -
AbqTiger I got my Herceptin with chemo once every 3 weeks. After chemo I still did it every 3 weeks. I know some women do it weekly when on chemo then switch to every 3 weeks once chemo is done.0
-
AbqTiger - I got my H with my TC every 3 weeks, and still continue on that schedule.
0 -
AbqTiger I received the Herceptin weekly during chemo then went to the larger does every 3 weeks. It was easy enough for me because I live 10 mins from the infusion center and could go on my day off. If this had not been the case, I might have pushed for the 3 week schedule (don't know what my MO would have said...)0
-
I was so glad to find this forum. I was recently diagnosed with cancer in my right breast, and I underwent a Modified Radical Mastectomy about a month ago. Fortunately, none of the lymph nodes tested positive for cancer, but I am HER2 positive. I will be starting my TCH chemotherapy treatments in a couple of weeks.
I've already found this discusssion board to be very helpful, and I know I'll be watching it closely in the future - both for questions and advice.
I've started preparing for my chemo in a few ways - bought a wig and scheduled an appointment to get my hair cut really short and funky.
I had already heard about the glutamine, chewing on ice during the treatments, etc. What else do y'all think it's important to do in preparation for my upcoming chemo?
0 -
AbqTiger - Herceptin every 3 weeks the whole time.
racerdeb - Welcome! Icing your fingers and toes is a good idea too.
0
