Taxotere, Carboplatin and Herceptin
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Zlota
I'm afraid I may join you if I dont change! Having the TC portion of the chemo drops my weight and then I slowly get my appetite back and my weight gets back to the starting point. My first time of Herceptin only is tomorrow. My appetite is in full force and I could eat anything in my path and it's scary. I havent gained yet YET but I am afraid it may happen if I dont do anything to prevent it from happening. It's just so hard because I am wanting to eat constantly!
Nora
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Nora
With me my apetite didn't really change, I was really swollen especially my legs and ankles so I went to see my onc, she gave me water pill, the swelling seems like its going down but the weight doesn't, I don't know what it is, maybe the steroids, the fact that my period is gone and I'm in chemopause.
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zlota,
Are you exercising? I know for me when I start up again that may have a huge difference in myself. I have not been able to exercise and I feel like a coach potato.
I am also wondering about the whole body in chemo-pause. I know women's bodies metabolize very differently once they hit regular menopause, it's a bit concerning to me that we were put in menopause before our bodies would have done so naturally and what it means for our weight.
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I asked my onc if I needed to take my oral steroids before TCH #2 since I didn't before tch1 and I wanted to do things same way. She said she prefers I take the oral prior because of fluid retention syndrome that one of the TCH drugs can cause. Of course, I also get iv steroids but she said primary reason for writing the oral was for fluid retention.
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zlota my onc told me I would gain about 8lbs on chemo. I actually gained 16 at one point but it was fluid (lost the 8 when put on a low dose diuretic). I ate the same but was less active and lost a lot of muscle on chemo. I know once I get my exercise back up to the old level and my muscles back I will lose the 8. So yes you put on the typical amount.0
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Thank you ladies,
Its so upsetting to see that scale go up and up and up...even though I'm not eating much, I was thinking it might be lack of excercise, since mx and chemo , the stress of the diagnosis
I just didn't have energy for it, I'm slowly trying to get bak to excercising daily but I will have my TE taken out next week so back to recovery again.
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Greetings, just mentioning that my wife Liddy had her TCH #3 today (special hello to others on the same schedule). Relatively uneventful so far, no doubt in large part due to following y'alls advice. Quick question: onc NP said it is time for a heart scan (echo), but I thought it was supposed to be every 3 months and it has only been 2. Can anyone confirm or correct me? Thanks!
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Samdobbs: My onc told me my heart scans would be every 3 months...Glad to hear that your wife is doing well with TCH so far-hope round 3 goes just as well!0
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samdobbs - mine does every 3 months - but maybe they just want to schedule it because it takes a couple weeks to get it scheduled.0
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samdobbs I had the MUGA before chemo in September. I still haven't had another one. I don't think my onc will do another unless I have symptoms. Seems it depends on the onc.0
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I also had TCH#3 today - crazy experience with power outage and tornadoes. Fortunately center had our pumps plugged in so we finished on battery. They turned away all the afternoon appts. Can you imagine getting all psyched up and then you have to go home? The lady next to me couldn't be infused because her platelet count was too low. She had to go get a platelet transfusion. My platelets came up, hemoglobin and RBC held steady but are low,and my WBC fell into the low category for the first time. The infusion room is all glass so we had a little natural light. Went to the ladies room with nurse holding a flashlight and they just said come in tomorrow morning sometime for Nuelasta because all computers were down! Fun times! They decided to put Ativan in the drip for the first time because of breakthrough nausea so I was a little rubbery on the way home. We stopped at Petsmart to get a new dog bed (my DD works there as a dog trainer) so all her co-workers probably thought I was high. Actually I was!
samdobbs - my onc orders an echo after the third tx, not month. I received that Rx today and will need to have it done prior to my next tx, #4. The onc PA said she has never seen any of their patients with problems but the black box warning on Herceptin was put there after the early trials so that is the protocal they follow.
dragonfly - how are you doing?
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I had my first H only on Weds. Besides the D no problems. I DO NOT get any steroids or neulasta. Since this was only my second time I was surprised no bloodwork. I have a pretty horrible case of what looks like acne on my face, neck and chest. I love re-living those teenage years.
I am visitng a naturpath tomorrow. Since my onc practice provides no guidance on anything nutrition or supplement related I have decided to pursue this on my own. I have read 3 books on the subject so far and have a couple more I am going to start.
I really like the nurses at this practice but I think they are pretty oblivious to whatever you tell them. I have mentioned several times I would like to have something on hand for sleep and anxiety and they just kind of ignore it. It is 2am now-I shouldn't be up writing on the computer. I am going to be more insistent next week. I don't know if I actually want to take them but I just want them here. They just kind of pat you on the shoulder and scurry off to the next room.
I find it amazing that my dog got an allergy shot on monday and they called twice to check on her... I got a stage IV diagnosis and a 4hr chemo treatment in the same day and never heard a word from them.
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lilylady - do you get steroids in your drip? That is what I get, none before or after. After my initial TCH my face broke out as well, but has not on subsequent tx. I think it is steroid related, and I also get the pronounced flushing the day after tx from the steroid and then it goes away by the next day. At first I thought great - weight gain, bald and teenage skin?
It is pretty unusual not to give you any anti-anxiety stuff. If they prescribed Ativan for anti-nausea it also contains anti-anxiety. Your onc office may not do weekly CBC - a lot do every other week. Is your onc office separate from your BS office. My BS office prescribed the Xanax during my first appt. prior to surgery, chemo or anything. I haven't used it but I have it if I need it - he prescribed enough for an entire year. You might be able to get it that way if you don't have Ativan. Even your regular primary care doc could prescribe it for you. Do you have the opportunity to talk directly to your onc - maybe that is the route to go instead of through the nurse.
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Lily definitely get meds you need. The onc gave me a lorazepan script before chemo started. I usually get my "screaming" meds from the pcp however the onoc readily wrote me a script for those also. There is always a dr somewhere in the office when chemo is being given. You might just have to be firmer with the nurse. Remember we have BC no one can judge what we say or hold it against us if we nutt up:) libraylil
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I get a CBC done when I have the TCH chemo every three weeks. I also see the onc those days too.. My onc would rather prevent SE than wait and see how to fix them when they come. She also wrote me an RX for Xanax. It helps me with the queasies and also helps me sleep. I love her!! Going for H only today. Now if someone could just find a cure for the C & D roller coaster.......
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There are steroids in the pre-bag. I don't know why I can't sleep. Everything is different now. I have always been a buzz-saw as far as energy so by the end of the day my body was ready to sht down. Now I feel more manic-buzzed up but not in a positive helpful let's clean the house way.
Ihave NEVER been a pill taker. Prior to this I had an expired bottle of Tylenol and my vitamins. The meds are there to help so I am going to use them. I see the onc on the TCH days but I think I will call the BS and have her order me something. She's the one who threw out the liver surgery stuff that has me lit up for now. I t has been a whirlwind of 1 big thing after another since DX. I keep thinking the bad news thing has to end sooner or later.
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Lilly
I outright told my NP that I NEEDED something for sleep. My onc had already given me Lorzepam for anxiety and nausea but I still needed something for the night time. She was very good about getting something that worked for me. I have a variety of sleep meds. Currently Lunesta is doing the trick but I have other stuff now when that doesnt work. Seems that nothing works long term and I need to switch it up every once in awhile.
Just about headed for my first herceptin only treatment!
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Nora - Congratulations on your first herceptin-only. Please be aware that it takes a few times for your mind/body to really 'get' that it is just herceptin and not chemo. After all, you are going to the same place and going through the same process. My anxiety about going to the chemo room lasted the first few H-onlys until it finally sunk in that it was just herceptin and then I could just leave and go about my day. So if you are still impacted by this, be gentle with yourself. You've been through a lot with TCH. It will take a little while to establish the new routine.
Good luck - hope it is smooth sailing from here on out!
Amy
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Hi All. Had a great day yesterday at treatment #3. Thursday, March 31)
An old friend drove me to St. Louis, and we laughed and talked for 5 hours, plus waiting time, plus two hours there and two hours home and stopping for dinner on the way home. I told her as we walked to the parking garage, "Chemo shouldn't be this much fun."
Got good reports. Onc said I am a tiny bit anemic and WBC was perfect. He spent some time explsining that he would just promise me that for about 10 days in mid cycle that my blood count is low and WBC is probably very low. He said that is the way chemo operates, and ideally your body rebounds so that when they check it at optimum level which is the day of the next treatment, it hopefully is close to normal. He also said that of course that is not usually the case. He said that he thinks it is amazing that I have been able to rebound to normal after the first two treatments, but warned that My body may not be able to continue to do that, and not to let that upset me -- but so far so good.
He said that they will schedule another MUGA scan for after this treatment, but then changed his mind before he left and said, "I think we will wait until after the next treatment to do that." I didn't ask why."
I didn't get the Benedryll this time, but still got Steroids, Aloxi, Emend and Pepcid premeds. Today, I was still able to ride my recumbent bike 5 miles, although I couldn't keep that up mid cycle last time. My cold symptoms have gone away. No nausea or pain of any kind, although I haven't ever had so far. The only SE I have really had is fatigue. I'm on two steroid tabs a day today and tomorrow. Last cycle I wiped out on the afternoon of Sunday following treatment. My husband still teaches part time and his band concert is at ll AM on Sunday. I have to last that long. I feel very blessed, and wish that I could pass an Easy button along to all of you. I've gotten to where I remember some of the names now when I'm lying in bed and say a prayer for some of you individually. Of course I've lost most of my hair, but still have enough to not wear a sleep hat. I have a son with Down Syndrome, so I wear a ball cap when he is home, don't want to freak him out. He used to say "Where going?" LOL guess he's used to it. Yesterday when I was helping him get ready for school, he said "Cool hat." I have a really nice wig, which feels stupid on, but I guess if you didn't know me it would be ok. I like my halo a lot. Wear it under my hat and just enough show in bangs and back that people probably just think, "Oh she still has some hair." Funny, you start out caring what everybody thinks, but now, I have one son in Michigan getting a PhD who cares about me a lot, and shows it more than he ever has, one who is developmentally disabled and is eventually ok with anything. There is only one other person I care about, and I guess when he said "In sickness and in health," he must have been meant it.
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Pollyagain - the ending of your post is so sweet, I love it!
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Hello all. Wife got TCH #1 today at St Joseph Hospital in Baltimore. Registered about 10 and finished up at 4:15. As of this hour the treatment regimen was somewhat anti-climactic. I expected a dramatic event, but things went very smoothly. We left immediately afterwards to our beach house in Ocean Pines, MD, about 3 hours from the hospital. We are taking the chance that she will not have any side effects which warrant a return visit to St Joe's. So far all is well other than her port site really smarting so I had her lather it up again with lidocaine which did the trick. From best I can determine from this site and other info, her SEs are most likely to kick in on Sunday or Monday. Let's hope they are modest. She seems convinced she will retain her hair...I'm betting otherwise, but told her that if she does experience only thinning to just feel to be blessed with good fortune. Any words of wisdom from you veterans is welcome.
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Should have added that I have the distinction of administering Neulasta tomorrow.
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NathanL - Sounds like things went alright. Drink lots of liquids. Keep an eye on constipation/diarrhea. I got my neulasta shots in the stomach in the fat area about 1 inch to the side of the belly button. Start claritin or zyrtec for the neulasta on day of shot and take it for a few days. Good luck!0
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NathanL Glad things went smoothly even though it was a long day. You're right that the worst side effects tend to be approximately 3 days after TCH but there are still immediate side effects that some of us deal with like headaches, constipation and taste alteration in the first few days...also make sure she takes the meds to stay ahead of the nausea so that it doesn't get bad. One of the best pieces of advice I've received here is to drink plenty of fluids-it will definitely help a lot of SEs.
As far as the hair, we all seem to have a slightly different response. My hair came out in clumps and became a huge mess so I had to buzz it by day 16 of cycle 1 but SpecialK (who started at almost exactly the same time) has held on to a lot more hair for a lot longer. At best, your wife should be prepared for losing a lot of hair to thinning/shedding-best to have a plan for head coverings, etc just in case.
Hoping that your wife has minimal side effects...we are all here for you if you have any questions! Hugs!
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nathanl - welcome to another husband. TCH #1 went pretty well for my wife, as others have said, drink plenty of fluids. Also, she got tounge sores after her first treatment, then she started using biotene mouthwash and toothpaste and never got them again. My wife lost most of her hair after #2, but everyone is different. I assume she'll get neulasta tomorrow, my wife needed aleve to get through the two days after neulasta, others recommend claritin as well. Good luck to you.
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Nathan,
I know what you mean about anti-climatic. I really didn't have any SEs of note the first two treatments. I think it was because of adrenalin. I was in fight and destroy mode...lol
It wasn't until about #4 actually that a few SE's "caught" up with me, but I never had a down day. Didn't spend any time in bed etc during my entire TCH x 6. After the last treatment, on two days, I took a 30 minute nap (I've never been a napper)....
Have your wife exercise as much as possible. Walking is a good minimum, though it really doesn't do much when it comes to losing bone and muscle mass.
Good luck to her, and you.
Drink! Drink! Drink!
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Has anyone gotten a rash within a couple of days after infusion? I have an itchy rash all over the upper half of my body. They gave me Ativan in the drip (have never taken it before) this time to help control breakthrough nausea and I am wondering if I am allergic to it. That is the only thing that is different this time, although I also took Macrodantin for a UTI and just stopped the day before infusion. I have had antiobiotic allerigies that took a week to show up. I took Macrodantin years ago with no problem but that was also the case with Penicillin. I took it for years and then one day I was allergic to it.
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My newest thing...I'm on day 5 of the 3rd cycle of TCH and I didn't get my period this month. I'm now waking up every night multiple times (every couple of hours) because I get hot. So far, I'm not waking up actually sweating but it's a cycle of hot, cold, hot, cold. I'm usually cold all the time so this is a huge change for me. Is this the beginning of hot flashes and if so, is it going to get worse? What should I expect next? By the way, I'm 41 years old. There is just no end to the surprises...
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dragonfly yes those are hot flashes. Not everyone gets all sweaty. I never do. At times I'm still not sure if I'm having a hot flash or I'm just warm… they can be that subtle for me. Lots of us kick of th covers then a few minutes later we are cold and pull them back up.0
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dragonfly - I started with the hot flashes after round 2. That was last sept. Still have them. Wake me up at night. See if you can get a remote contolled stand up fan with a timer to use at the foot of your bed. It helps me.0
