Taxotere, Carboplatin and Herceptin
Comments
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Swampy - very sorry to hear about your nephew. Here is hoping they catch him soon.
On a lighter note - congrats on the upcoming deporting!!
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Swampy - I am so sorry to hear of this terrible tragedy. I send my love & support to you, your sister and family during this very difficult time.
Blessedby4 - I do not have specific knee pain. But I have noticed when I was working in the garden recently that just the normal moving around and getting up and down really bothered me and was a lot more difficult than I ever rememebered. I just finished H a few weeks ago so we will see if it improves over time. Do you think maybe a daily stretching regimen might help? I think I am going to incorporate that more regularly into my gym routine.
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Swampy - I am so sorry.....My thoughts and prayers are with you and your family.
Blessedby4 - My joint pain is from my hips down...it's really bad. I feel so old when I get up from a sitting position....my legs stiffen up and I walk like a 90 year old with arthritis. I have never had this pain before either. Lucky you to only have 3 more Herceptins...I have till December before I finish. I am hoping it doesn't get any worse. I try and walk on my treadmill for an hour every other day. Ironically when I am on the treadmill the aches and stiffness subside, but when I step off the treadmill it all comes back....go figure:-S
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It's been such a long time since I have posted, but I continue to keep up with everyone. I finished with my Herceptin treatments in January and I am doing really well. I have one more procedure to have my nipple tattooed, and that should be the end. My question is about shingles. Has anyone had that problem? I have two spots on my butt and was just diagnosed. I know it is not uncommon during chemo, but my chemo ended in May '09. I'm hoping I've caught it early. I'm so glad that this thread has continued because it was the most helpful information I found anywhere.
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Hello everyone,
Blessedby4 - I have many joint problems and neuropathy from Herceptin and Arimidex. Doctor told me to take something like Aleve gel caps. Within 15 minutes pains go away and the cap lasts about 8 hours. I am 6 weeks past last Herceptin treatment. The best news is that my hair is growing so much more thickly and quickly in the last few weeks as Herceptin leaves my system.
The gel caps could be worth a try.
Linda
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Duneoaks - I had shingles twice this year. About 5 days into the first round I felt another spot coming on. I went online and read about apple cider vinegar. I put it on both spots, a few times a day for 15 to 30 minutes, and it completly halted the progession of the second spot. A few weeks later I got shingles again. I started right away with the apple cider vinegar and the spot never fully 'bloomed." I had no itching, pain, or scabbing of any kind. Purely anecdotal, but I personally recommend apple cider vinegar for shingles.
Amy and CakeLady - Congratulations on the deportation! And congratulations to all who are completing their TCH or Herceptin treatments.
Christy and Swampy - Your families are in my prayers.
Bluedasher! - How very wonderful to have an update. I am so glad that you are doing so well.
I am doing fine. My hair is totally out of control; it is wavy/curly and very unruly! My white count continues to rise and fall, but it is no big deal; I just get tired when the counts are low. My school term ends in 4.5 weeks, but I will stop seeing students in 2.5 weeks. I am really looking forward to having a healthy and relaxing summer. I intend to spend one entire week doing nothing more than reading a book. WooHoo!
Question about sunscreen - My skin easily gets hyperpigmentation with sun exposure. What kind of sunscreen are you ladies using and what, if any, precautions are you taking for your radiation areas?
Cheers!
Cloud
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Cloud, I hate to say this but I don't use sunscreen. I was told too but I hate the way it smells and I have bought light and also unscented but it does have a lite scent. I wish they could make something that was not scented at all. My dermatologist was going to give me some samples but we forgot. I wish I had remembered! You must put it on at least 30 minutes before you got into the sun and also if you are taking any kind of meds like antibiotics do not forget the sunscreen. That is how I got a real bad burn at the lake one time. I usually don't burn but I had been taking antibiotics. there are other meds that do this too. As for the radiated areas, they stay covered up! I am old and no one wants to see that! :} ticks are really getting to be a problem here in OK. I hate those things so I will be putting some bug stuff on when we are outside. they had hit my husband several times. Me once but I am having a problems with that bite.
Blue,It was so nice to hear from you. I know when people are working and busy it is hard to look in here but please keep on because you have a lot of good information. I am doing okay still battling the blood count problem but now that I am not on the trial med I can eat stuff to get my blood up I hope. Seems like the raisins and crasins were helping a little but the onc said no herbs or vitamins. Good food only so that is what I will do.
I am so happy for all of you that are finishing and will be getting on with your lives. Seems like everyone just gets finished and a new batch comes in. Keep in touch because they will need you.
Carolyn
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Swampy, what a tragedy. Hang in there.
I have a recurrence of old sciatica and a new hurt on the other leg that seems to be a tendon thing. I am assuming it's not from TCHA, but more because I've been sitting too much in a squishy chair when working from home my post-chemo weeks. Or who knows. But after 4 rounds (#5 tomorrow) I have noticed that I'm weaker-- I've had a harder time in pilates doing upper-body exercises that I was doing fine a month ago. I presume that's the chemo, or maybe Herceptin? Anyway, it will come back, so I'm not worried.
The smell! It was pretty bad last time. My husband can't tell, but he has a terrible sense of smell (luckily in this case). The pee thing is the most noticeable. It took a good 10 days or so to go away.
But that's not such a big deal. Been thinking about Lynn Redgrave, and grateful for TCH, especially the H, because it will give us all a pretty good shot at a recurrence-free life.
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Hi! I hope you don't mind me joining in. I am so glad I found this thread. I keep telling everyone that I am sick of feeling sick. It feels like it never ends. Starting at the end of a thread is a bit confusing. I was so sad for the person getting deported from the country.
But, then I went back and read several pages before, and now I understand. Duhhhh-chemo brain. I too will be deported in June. I finished the TC part of my treatment September 2009. I only made it through 5 rounds. My body didn't take it well-many issues and complications. But, luckily, that was enough because my cancer in my breast and lymph nodes had completely disappeared when they examined the tissue after my mastectomy. Now I am fighting to get through my Herceptin. I have 2 treatments left-knock on wood. They took me off it in January due to bad heart test results. I missed 2 treatments that the Oncologist won't let me make up. I now see a Cardiologist and am taking heart meds and am back on the Herceptin. I have another Echo tomorrow. I am hoping it comes out well. At least I know I don't have clogged arteries now (the other family history issue) after having an angiogram. I have been back to work as a teacher since December or at least I am attempting to. I get exhausted and end up having to miss a day here and there to get rested again. Reading your posts here make me feel better because I too have the aches and fatigue. I feel 100 years old and am only 44. I thought it was just me. I also have noticed that the chemo brain still hasn't subsided. Anyone else? Good thing they have spell check. I am a newbie to forums. Do I put my stats in the signature or biography section so it will appear under my posts? Thanks!!!!
Lisa
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AmylStrong: Thanks for your help! I have tried to do some stretching every day to help with this joint/muscle pain and I can't say I notice a difference. When I get up from sitting/lying or have to bend down to the ground (which is often with my work) this is when I notice it and oh my it really hurts!! Gardening is really become a chore instead of a hobby!
CinCan: I am sorry to hear you might be dealing with the same issue! I am trying to believe that it has to be from the chemo and/or Herceptin being that I never had this prior to bc. I am hoping when I am through with the Herceptin that I will start to notice some improvement! Once I get up and moving then I find I am better except for the bending but I am right there with you in saying I feel like I am 90 years old!
vangoghpro: Thanks for the suggestion of trying some Aleve, I will go get some and see if that helps but hate to think I would have to take that every day along with my Tamoxifen (and full size aspirin due to I have a blood clotting antibody that I remembered I was diagnosed with years earlier).
Glad2BHere: Welcome! Glad to hear your through with chemo and soon will be done with Herceptin also. Sorry to hear that you have had some heart issues due to the treatment. Glad they are monitoring you for that. I have 3 more Herceptin treatments to go so I am right behind you! I would say that I also am dealing with chemo brain, more in my trying to put together my thoughts into words and it's not too bad! I believe you stats go in the signature section but I could be wrong since it's been awhile since I did that! Glad you found us!
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Welcome, Glad2Bhere.it is good that you made it through what you did. this site has been my life line for a while but I have finished TCH and I am still trying to get stronger. I am happy to say even though it took a while my brain is back to normal. It was a struggle for a while when I went back to the bank work. they still treat me like I lost my mind and never found it but as for the aches and chemo I am doing great. I have arthritis and fibromyalgia anyway so have had a rough time even before cancer. I will be 63 in Aug. I am not ready for a Nursing Home as the young ones think. the thing that is bad for me is sex. I just can't get that going again and I have had urinary tract problems a few times lately. I tire easy but I do think from being a few days on the trial med made me worse with my energy. I am no longer on the trial med. I wish you the best!
Carolyn
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Blessedby4 - I saw my Onc on Friday before my Herceptin Tx and told him my hip/thigh pain is getting worse. It isn't allowing me to sleep at night and hurts even while I'm sitting. He is sending me for a full body bone scan to rule out Bone Mets. To top it off, he decided to give me a breast exam and found a painful lump near the surgical site on my breast (I thought the pain was from my daily Rads as my boob is swollen) and is sending me for a Mammo and Ultrasound tomorrow to rule out cancer recurrence. Needless to say, I am a little anxious:( It helps to share this info on this thread, as I haven't told my sons, parents nor siblings. I don't want them to worry until I have all the results. I thank god for the support of my DH who usually takes me to all my appointments.
Glad2bHere - Welcome... there's lots of support and good advice from the wonderful ladies on this thread!
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CinCan: That has to be scary I am sure, I will be praying for you that this is just aches and pains and nothing more than that. I bet finding any kind of lump in your breast has got to have your stomach in knots. I am so glad for you that he noticed this now opposed to later and will be praying that this turns out to be nothing more than possible scar tissue. I am so glad you have the support of your DH and you know we are here for you as well!
Keep us posted!
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Glad2behere You go to My home and add your stats to your diagnosis
Cincan-How scary this must be for you. The scans and waiting for results bring be back to the beginning of this detour in my life and remember how frightening that was. I will be praying for you that it is nothing and that you will not be too stressed.
As for me, I have been having some weird back pain in the middle of my back. a couple inches to the right of my spine. My dh says he is pretty sure that it is tight muscles. It is such a weird place to have pain. So, of course, I worry about it being mets or lung cancer. I will talk to my onc when I see her next Monday. Then, I have had what i think is a cold. It comes and goes. Some days I have a wet cough, other days I don't. I have either been congested or have the runny nose that is like a faucet. I worry about living the rest of my life with the constant fear of "what is this pain..."
Take care everyone
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I was deported yesterday!!! I also have about an 8 inch incision where they fixed and smoothed out a flap of skin from the original mastectomy that didn't heal correctly. Not a deep cut and not much pain and, thankfully, no need for drains. I finally found a use for the pretty little velcro closing compression tube top they gave me after one of my biopsies. It's great for holding a bag of ice in place over the incision. LOL.
I have become an advocate of physical therapy three to four months following mastectomy. Especially hands on massage and stretching therapy. My therapist also keeps me taped up in "Kinesio" tape which has almost eliminated nerve ending pain (those sudden flashes of stinging type in the under arm -axilla area) and phantom pain. The tape provides a lot of support to the muscles and surrounding tissue especially where nodes have been removed. I don't know what makes it "work", but as my therapist explained, the damaged nerve endings are seeking the end of the nerve paths that have been removed. It's like they have become disoriented. The slight compression and skin contact that the tape provides seems to satisfy them and calm them down. Kinesio tape is best know in the sports medicine world, but if it can help mastectomy patients that's fine with me. Many therapists have never heard of it or been trained in how to use it so if you opt to try it, ask your therapist if he/she has experience with it. Here's the official Kinesio web site.
I have ordered a new box spring and matress. Even though I have a good Sealy pillow top matress now, laying on my side (either one) is like trying to sleep on plywood. I've got black and blue bruises along both rib cages from the coil springs "pushing back" on my ribs. I'm hoping that memory foam will be better. It sure can't be any worse.
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Cincan ,I have a fatty necrosis from radiation but they did a biopsy just to confirm this and I also had a complete bone scan before my trial meds. Everything was good but of course I think everything that happens to me might be a recurrence. Try not to worry but you will be glad to have this done just to know for sure. One of the techs that was doing some tests said he thought we should all get a PET scan. I did not say anything to my onc because I believe he is doing the best for me. He is very thorough and I trust him. I pray everything will turn out good for you too!
Swampy, I know about kinesiotaping and the first I ever saw about it was at the summer Olympics. I understand it really helps with athletics. I have tried to encourage young people going into medical field to check on this because I do think it is a help for many problems besides sports. If anyone has lymphedema you should look into it. I have one leg that swells and I wear compression stockings which help the swelling so much and the pain too.
I hope everyone is doing good and hang in there this too shall pass.
Carolyn
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Swampy, congrats on being deported!
Cincan, I'm so sorry that you are having to go through this. The anxiety is the worst. I hope its just a sore hip and sore lump from the radiation.
Anyone on here have weight LOSS when on the herceptin only? I have lost 7-8 pounds since finishing chemo in December, and I was only 107lbs then. I'm down to 99--100 and getting worried about why I keep losing. (My normal weight is 105--been that for years) I don't feel like I've changed my eating habits, so it gets me wondering, and we all know where our minds go to now everytime something is just a little bit awry!!! Ughhh. . .
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Weety911, I loose weight every time I feel a little bad now but I think it is leftover from being so sick with chemo. I did continue to loose on Herceptin only, although I was not sick to my stomach so much just aches and fever after treatment. I started eating anything I wanted to but that is not healthy so now I am fighting to get back to healthy food. I made the mistake of doing the trial med and now I am having trouble with my appetite again. I think I had the bad taste while on Herceptin and that may make a person not want to eat. I would talk to the onc though and tell him what you are worried about and they should be able to do some tests to relieve your mind. I know it is easy to say but I decided that if it is God's will I will survive. Live your life like you will live forever and try not to worry but do watch out for signs. We pay the onc enough to give us some answers so ask when you need to.
Carolyn
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Thanks everyone for your prayers. The mammo and Ultrasound showed a Seroma which is a buildup of fluid. The doctor drained it and ahhh.. my boob feels so much better. Now just waiting for my bone scan to be scheduled and done.... and praying all will be well also.
weety911 - I was told by one of the female Oncs that majority of women gain weight and my Onc nurse told me that all the women she gives Herceptin Txs have all gained weight. Her exact words were "each time they come in for their infusions they get bigger and bigger". So, I am really being careful of what I am eating cause I'm the opposite of you...I've gained 5 lbs when I would've liked to lose 10 lbs! Definitely talk to your Onc about losing weight especially since you haven't changed your eating habits.
Swampy - congrats on being deported and wishing you sweet dreams on your new mattress!!!!
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Thanks, CinCan!! BTW...I think I am the seroma queen around here. I first had one on the right side (non tumor side) that had to be drained 4 times and held up my radiation treatments because I was so swollen they couldn't get the mold thingie on me to position me correctly on the table. The second one developed in the axilla area on the left side during the last week of radiation and my stupid radiologist kept radiating it and it got infected and caused a LOT of nerve damage. I'm still doing physical therapy to aliviate the nerve pain problem and excessive scar tissue. I feel your pain. Fair warning to gals going through surgery. Seroma's develop in about 30% of mastectomy patients (don't know the figure for lumpectomy, but still highly possible). Look for local swelling that feels "squishy" and is stingy sharp painful. Draining is a breeze. They apply a little lidocain for a local anesthetic and drain with a needle. Sounds terrible, but not painful at all. And you will have immediate relief.
I also found that wearing a compression bandage after draining provided good support and slowed down reswelling. Before the bandage I was getting drained every three days. Started wearing the bandage for 10 days and the swelling did not recur. I used a velcro closure bandage and just cut it down to a smaller size. You may have to go to a medical supply store to find one.
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HI all,
Quick question for you? Did you all get emend for your nausea? I just got it for txt #5. Curious is any of you started out with this. Wondering why we waited until #5 to get the RX for it.
Thanks,
V
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VMarie: I never got Emend. I asked for it after #2, but Medicare would not pay for it because it is more expensive than the "standard" nausea drugs.
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Hmmm.....dont think I have had it either.
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My oncologist tried everything before she offered me the Emend. I had asked about it and she said it was "very expensive" and she had me taking 4 different medications to counteract the nausea instead. If I accidently missed one I began to feel very sick.
She finally agreed to the Emend for the last treatment, #6. It was then that I read the side effects, one being hair loss. As I was doing the Cold Cap Treatment, I did not want to risk it, so I did not take the Emend after all.
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I was never offered Emend even though I was so sick most of TC. I did not know the side effects but I do know several people who took it that was on Medicare but they had to pay a lot for it. I guess it just depends on if you want to pay that much. I did take Zofran (the generic) and I do not like that because it gave me a horrible headache and I was still sick just could not throw up. I took Ativan and Phenegren but they make you go to sleep. There must be something out there that could help without making a person sick in some other way. The Zofran generic melts under the tongue so you don't have to swallow it. It does not taste great but I can do it. Everything else came right back up. Good luck with getting through the chemo but at least it is not much more than 6 months.
Carolyn
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vmarie, I had Emend for all six treatments--3 pills for each one as I recall. It was very expensive but my onc prescribed it before I started. Not sure if he does so for everyone, or if it was because my insurance covered most of it. I've heard it referred to as the "Cadillac of nausea drugs." I never got sick. Good luck to you!
Becky
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vmarie....I had Emend during all 6 treatments. As the other girls said, it is expensive and that is why some docs don't prescribe it. My insurance covered most of it, I think I paid $25 each time. I never had any nausea at all the whole time.0
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Christy.... you are looking very cute these days.. I need to put a new picture up too. I'm back at work now. I have to go in every week for fills . I have had one fill since my surgery and it went fine. But the doctor still wants me to wrap up in an ace bandage to keep pressure on my expanders so there is no fluid build up and no movement of the expanders. I think he is trying to be extra careful after what happened before. I think my biggest complaint right now is hot flashes... from Tamoxifen, I hate it. and summer is coming, its already hot here, I am going to be dying. I do not tolerate heat well anyway, and now hot flashes.
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Christy~ I agree with Wendy you look adorable and I am so jealous of how cute your hair looks these days.
Emend is absolutely wonderful IMO. I didn't have it for tx 1-4 and I refused to come back for 5 &6 because treatment 3 &4 I was sick for 11 days each time. I finally called before treatment 5 and said you either give me something else or I am not coming back because I was SOOO sick. Then for me treatment 5 &6 were MUCH easier than 2-4, I was just tired.
Speaking of treatments I am almost a year out. It's hard to believe that a year has gone by......
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Thanks Wendy and Jamie! If you are interested, I posted some pics on the 'Hair, Hair, Hair' thread of my hair re-growth over the past 6 months. It is page 170 on there. Or, you might be able to click on my profile pic and then scroll down to see if it is in my recent posts.
Wendy...I am still getting hot flashes too, but I am not on Tamoxifen. They are getting fewer and farther in between though. I have not yet had my period return and it has been almost 14 months since my last one. That has been the only plus to this whole process.
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