Taxotere, Carboplatin and Herceptin
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So good to hear how everyone is doing and I am happy for the end of chemo for you Blessedby4. I did not feel too elated I guess but just relieved and got on with the other tx. I have been finished with all of it since July 09 and it is great. I still go for blood tests and port flushes but still nothing like before. I did go through a period after everything was finished worrying about it coming back but I am not going to let that consume me. I guess we will all go through that some. My brain is doing a lot better and my energy is a lot better except my arm strength is not as good but just have to work on that I guess. Should have been pumping iron while on chemo! Yeah well it was a thought but not at the time since I was too sick. All I could hold up was my barf bag.
I have been trying to help hubby with some stuff and I am not very strong in my arms and it makes it hard on him for me to help I think. anyway I try. I have intended to lift some small weights but never get a round toit.(not a misspell) I am still looking for a round toit. Have you seen one? I can sweep or vacuum and I do get tired but I get it done.
As for people bashing other cancer victims I think if anyone has cancer of any kind it has to impact them as much as it has anyone else. I am sure no one would choose one over the other. If I had a choice I would choose NONE. We have a young male friend that had testicular cancer and they choose to have a 3rd baby right away and then he had his surgery. You would not believe the number of people saying stuff about them having a another child so quick. They did not know what was up with them. One older guy was really being critical and my husband finally told him why and he did not understand. I think this guy is on the verge of full blown Alzheimer's or just stupidity. he says things without thinking. I know these young people heard it. the Bible talks about the tongue being hard to control and I hope I can do a better job of it myself.
BoldI am so sorry you have the flu. I am scared of getting that. I have had the flu a few times over the years and the winter of 1974 was so bad. Also a few times when trying to work and that is awful. I wish you few aches and fever. Take care! We got our reg flu shot and I know you can still get it but it may not be so bad. In Oklahoma we have had several children die from the H1N1 it scares me. I know my son who was 5 when we had this bad kind and was sicker than the older ones. Have friends bring food and put it on the door step so you don't have to go out in public. I am thinking about buying stuff to have on hand. Anyone with friends with the flu take a care package and let them know it is on the doorstep but don't go in.Juice, soup, meds etc. It all helps! I hope I can be a help to others. I appreciate being told I have helped. Thanks!
Have a good day everyone.
Carolyn
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Has anyone here had neuropathy that affects the leg muscles? My leg muscles are losing strength and are very painful. I was told by my Neurologist that the damage was most likely due to my chemo. I am currently on Abraxane, carbo & Herceptin.
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dharmamama, I'm having the same pain in my leg muscles. My onc didn't say it was neuropathy, in fact she didn't say much of anything other than she would like to hear about it if it gets worse. To me, it feels like the fronts of my thighs are always tired, sometimes they burn if I squat down or sit cross-legged on the floor - kinda like I've worked out and overdid it - only I don't work out! I just finished tx #5 out of 6 so I'm hoping I don't have to deal with it too much longer.
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Dharmamama- YES the leg pain is no fun. I think most of us can relate. i actually have discussed this at length with my nurses and have come to the conclusion that it is a combination of the nueropathy and the drop in blood counts. Even though my blood count was considered "fine" by my docs, i still showed a lower Red and Hemoglobin count than what is considered normal range. My legs were so sore and tight and had no strength whatsoever. Many of us ladies have talked about how hard it was to just walk 10 yards let alone climb a flight of stairs.
There wasnt anything that i could do about it other than wait it out. Maybe someone on here knows of some treatments, but i found that 5 weeks after my chemo it finally got better and now at 10 weeks post tx, they feel fine again. I also got weekly massages and found it helped me a lot.
Good luck and hang in there!!!
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Has anyone here on Herceptin gotten a flu shot? My doctor said I should get a flu shot now and then get the new H1N1 shot too, when it is available this month. But I read on a Herceptin website that you should not get any vaccines without the consent of your doctor and should avoid contact with people who have just gotten the oral polio vaccine or the flu vaccine that goes up your nose. Does anyone know why that is, or if it is safe to get a flu shot ? I have never gotten flu shots before.
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Cakelady,it is safe and very needed to get your flu shot. I got mine last year while on chemo and H and I also got a pneumonia shot right after chemo but still on H. My husband & I always get our flu shot because we have had some bad flu seasons without it. the H1N1 I do not know about but I will get it whenever they have it here. Your doc said get it so I would. They should be able to give it to there but if not find a place. the mist is live altered virus. You need to stay away from those who have gotten a mist vaccine of any kind for up to 21 days because you can get it. they have signs all over my cancer center about this so if you have children make sure they get the shot not the mist to protect you.
The neuropathy! isn't it wonderful. I can say that mine has finally gotten a lot better. I was afraid I would have that the rest of my life. I do have it some from other reasons and had it before the cancer but boy did it hit me hard during tx. My feet got better once I was up on them more at work and the hands took a little longer. My legs felt like jello for a while but once you finish the tx and it starts to get out of your system you should get stronger and go away. It just takes time and effort. I was low on red blood cells and so I was never sure what caused what. Hang in there and try to move them as much as possible. Keep the juices flowing. My arm pit is still numb. I wonder if that will ever get back to normal. they do warn about shaving the arm pit but I don't have any hair there anyway and did't before the surgery. This too shall pass!
Carolyn
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Dharamama I have horrible pain in the bottoms of my feet, lower legs, and lower back. I am still on Herceptin (one to go). I did not have this pain until about 3 months ago so I can only assume it is a cummulative effect of the herceptin. I really hope it goes away. It has gotten so severe I am going to discuss it wil my doc next week.
Yes, the arm pit is still numb too. I don't think that goes away.
Lisa
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Wendy...My onco told me a few weeks ago to get the flu shot. I haven't yet, but do plan on it. I have never gotten one before either. he was a little iffy about the swine flu shot because of not knowing the possible side effects from it yet.
dharmamama...I had terrible muscle weakness in my upper thighs the last 2 treatments. The onco said it was because of the chemo. It is much better now.
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dharmamama: I had the muscle weakness and pain in my upper thighs too. It came at about TX #6, but was gone in a month or so.0
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I lucked out and do have feeling under my arm pit. That came back a few months after surgery. It probably helped that I only needed the SNB - when they take out all the nodes there is more chance that they will permanently damage the nerves.
I never had pain or nerve symptoms in my legs but my leg muscles got terribly weak during chemo. At the end, it was a struggle to go up a step. About 4 weeks after my last chemo, I was boarding a small plane and to get up the 5 steps with the weight of my computer backpack (maybe an extra 20 pounds), I had to pull myself up with my arms. It was kind of frightening how weak I was. But after that the strength came back pretty quickly. At the end of the week coming home, I was able to go up steps without a problem. I'd gotten light exercise all week because the place where we were having had short sets of steps between the meeting rooms and break areas.
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CAKELADY- I just got my flu "snif" this week at my onc office. They strongly recomended it and will give me the H1N1 when they get those as well. I have not heard anything abou the herceptin being an issue with the flu vaccinations.
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Flu Shot Goose Chase!
Well folks, I made it through my 1st four (of 28 ) radiation treatments. I don't resemble burnt bacon yet, but yesterday I noticed tiny little bumps in the affected area that look like a mild heat rash, and today I'm itching a little bit. I bought Fruit of the Earth 100% Pure Aloe Vera Gel, and I'm to use it 2x a day (once immediately after treatment and once before bed). Reports I've read from others who used this state that they had no problems with burning/peeling skin. ...yeah...Speaking of which, as I waited in the interior waiting area (where you can be half-dressed) to be called back to the radiation chamber, a woman came into the dressing room pitching a fit! She was totally distressed because one of the techs had removed some of the circular-tape that protected the markings on the side of her chest, and the SKIN CAME OFF WITH THE TAPE!!! She showed us the raw, pink area, and I immediately shifted into self-protective-clear-your-mind-or-think-of-dead-puppies mode! She is in her 5th week of treatment (with another week to go) and clearly her skin was breaking down (yet another potential side effect). Thankfully, my treatments will only BE 5.5 weeks, so hopefully, any of the truly nasty side effects will either not occur or just be beginning just as it's time to end; and the healing will come faster that way.
In the meantime, I will use the aloe vera gel faithfully and wash the affected area like a baby's bottom (squeezing soapy water gently and never scrubbing, patting dry) with Ivory or Dove soap. One study has said that drinking one glass of red wine daily while in radiation will help with skin toxicity issues. When I asked my radiation oncologist if I could have one glass of wine daily, she said I could have two; one for me and one for her! Gotta love medical science! LOL!!!
So, I went in for Herceptin-Only Treatment #10 (of 17) today. With the rain and the cold, it just seemed that every thing and every one was moving in slow motion today. I was also supposed to get my seasonal flu shot. Go figure, the hospital ran out of flu shots yesterday. *sigh* So I had the daunting task of driving around Baltimore and surrounding counties in search of the ever elusive flu shot. After calling/visiting 5 various Targets/Walmarts/Walgreens/RiteAids, I finally found the precious shot at the Safeway in Ellicott City. *whew*
I have a fairly busy weekend ahead and I'm looking forward to it. Even if it does rain the whole time (hopefully it won't, especially for the Breast Cancer walkers on Sunday!)
In the HairUpThere Report, I can happily state that I've got a 5'o'clock shadow! Ok, maybe a 2'o''clock but YAY!!!
The yarn for my newest project arrived today, so after I finish my Welch's Grape Juice with Crushed Ice (nothing like eating your juice with a spoon!), I'm going to curl up in bed and fondle some fiber!
Have a Wonderful Weekend Everyone! Alaina
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Thank You so much for all of the responses on neuropathy/leg pain. I wish all of you didn't have to go through it, but I am also relieved to know I am not the only one. I have lost all of my tendon reflexes at this point. I was seen by a Neurologist & a few more Oncs who all feel that this is myopathy and that continuing chemo is too risky. I have made it through 3 rounds (3 to go) and I sincerely hope it kicked some cancer butt. Hopefully I will be able to stay on Herceptin though.
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dharmamama So sorry you have to stop treatment. Hopefully you can continue the herceptin.
Lisa
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Alaina, I got the red bumpy itchy rash on one part of my breast pretty early in chemo too. The nurse told me to put hydrocortisone cream on it. The hydrocortisone reduced the itch and after a few applications cleared it up.
Dharmammama, I'm sorry to hear that too.
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Has anyone considered doing the new trial for neratinib trial that is open ??
BTW, Blue I am also someone who really appreciates all of the research that you do. I look and read a lot of the research information and I come out of it not understanding most of it.
I am still trying to figure out when my Herceptin will be complete. I know sometime in February but I can't get straight answers from my oncologist. I also have to go have an echo this Wednesday because I didn't have one last month like I was supposed to. I know, I know....but my chest was open for a lot of the month last month due to my incision opening in my implant. So since my body doesn't like implants my 400cc Mentor implants now reside in my drawer in my bathroom...gggrrr.... I will be now looking at getting a flap done sometime in the new year. I am hoping that I can have SGap done in NOLA. My only problem is that I have local doctor's who do the SGap but I really want the best to do it since it is a one shot deal. The worst part is even though I no longer have my implants (and I do not have an infection) my body is still making fluid and I have had to be drained 3x so far.
Has anyone had wound healing issues while on Herceptin ???
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Jamie....I have a total of 17 Herceptin treatments and will be done in late February. Do you know how many Herceptin treatments you are receiving. Reading on these boards, it looks like some ladies have either 16 or 17 treatments.
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CCbaby, my onc does it until getting back to the date that Herceptin was started so I had 18. To work around a trip I was going on, two of mine were 2 week doses so I had exactly a years worth. 17 x 3 weeks = 51 weeks which is a little less that a year. 18 x 3 weeks is 54 weeks so 2 more weeks than a year. Lisa's onc also does it for a full year so she's getting 18 - her last one is next week.
17 seems to be most common.
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Bluedasher...CONGRATS!! I am so happy for you! I really appreciate the detail...and I hope that when #18 Herceptin is done come next September 2010, I will be de-ported like you! I can relate with the rash about the liquid bandaging they put on. Horrible.... and Like the others in this board, I really appreciate all the research you do, with the objective information. I wish I didn't see these articles this morning...what are your thoughts?
http://www.usatoday.com/news/health/2009-10-11-new-breastcancer_N.htm
http://www.usatoday.com/news/health/2009-07-09-breast-cancer_N.htm?obref=obinsite
I try to focuse on the HER2+ aspect that we in this group are relating to...perhaps this is what makes the difference between us and these articles?
I don't understand my current Onc...he says (as does the NP) that it is futile to get any of the flu vaccines while on TC as the inactive virus is killed by the chemo...plus, I do not have sufficient anti-bodies to work with the vaccine to make it of benefit. I have heard this in another board. So...I am going to hold off until I finish TC in December (I will have #4 on 10/29, #5 in November and #6 in mid December). I am looking to have my first drink on News Years Eve since this whole thing kicked in last July (1st surgery). I was thinking of going to Rite-Aid, to go ahead and pay for the flu vaccine, plus the H1N1... seems everyone in here is getting it while on Taxotere and Carbo?
I have a question for the group...I woke up this morning with my fingers/palms, toes/heels itching something CRAZY. Almost felt like little ants moving in my fingers and toes, but with an intense itching sensation. I thought maybe I got something on my hands/feet before going to bed last night, so I took another shower and scrubbed my feet/hands. Still was itchy, but after a few hours, has greatly reduced. I have never had this as an allergy...is this the first stages of a neuropathy, or am I simply losing my mind? Thanks for your patience...
hugs...
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When I went for my last chemo this past week, yeah, the doctor recommended that I get the flu shot so I had them give me that in their office. After getting it, I wondered about the chemo killing whatever the flu shot has in it and am wondering whether it did any good. The nurses were all positive about me getting it also. Nobody said anything about being on Herceptin still and that being a problem with the flu shot. Hopefully it was not a waste of a shot! Feeling crummy still after chemo and glad to know this should be the last time I feel this way. Anybody have any bad se's from just the Herceptin?? I have been told that that alone should not have any se's. I know they have to watch the heart and I have to go for an echo soon, but hope not anything like chemo se's.
Sorry to hear of some of the pain/neuropathy some of you are dealing with. I guess I was lucky to miss that se!
Anyone have weight to lose from TCH? Can't believe the weight I gained which I have been told is common on this treatment! Ugh...as if BC isn't bad enough!!
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blessedby4 ~ At least they gave you the flu vaccine!
It sure seems that getting the flu shot can't hurt? I don't understand my Onc's office. I get the feeling that my Onc' office is extremely conservative in their approaches (which is why the 2nd opinion is good). I might call my GP to see if he will give me the flu shot. I just don't understand the resistance. Your Onc's office actually gave you the flu shot! Wow...I haven't had the weight gain, but I can see why it would happen as I really crave carbs. I have to work hard to keep myself eating a balance diet with lots of veggies/fruit/protein, and minimize the carbs (which tastes palatatble).
SEs: As I am at day 10 of chemo # three right now, I cannot distinguish which medicine (T, C or H) is doing what? I know that I am essentially hairless (my peach fuzz head and nether-region is interesting), my two big toenails seemed to take a slamming from at least the first chemo (I have iced my toes with #2 and #3 treatment, so hopefully the puple moons and ugly edges on the one will abate). I am on day 10 of Pepcid, which seems to help the acidy tummy feelings (supposedly a SE of the steriod "OD" that I endured). I have sensitivity in my mouth (but no canker sores) and I still have my eyelashes and eyebrows (I am prepared to lose them between now and January 2010)
I have had crazy palpitations since starting; my pre-chemo MUGA showed the LVEH of .6 (which I was surprised it was that low) to establish a baseline to monitor the affect of Hercepting by my heart. Is this Echo you are talking about your first, or is it your second one since starting? Did you have an Echo before starting Herceptin to establish a baseline? Have you had any others Echo's since ~ to check your heart since starting? I am not sure when to expect the second MUGA...I hope that my heart is not damaged. This is why I am afrraid to do the rads...my cancer was at the 7:30 mark on my left breast, right where the heart is. I am leaning away from the rads; a 15% benefit to my recovery vs. 20+% chance damage to my heart and/or lung does not seem to be a fair trade? When is your Echo? Keep us posted...hugs...
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Sanaisa: Heartburn has been terrible for me all during chemo, some said it was the steroids and some have said it's the chemo. My Onc told me to use Zantac and double the dose, he said take two 75mg. Seemed to help a little but not as much as I would have liked. Still dealing with that today but hope in a couple days I will be out of the chemo sludge for good now and just building myself back up! This will be my second Echo that I will be getting. Had to have the first to establish the baseline like you said. My Onc said he would do them every 3 or 4 months during Herceptin, which I have until next July. I have never had a Muga and don't know why they give one over the other...do you?? I am suppose to set up my Echo in about two weeks but think I am taking my sweet time and just trying to recover from the final chemo and the end of that battle. Seems like all this other stuff would be small stuff to me know but I am still hesitant on starting the Tamoxifen, going for the Echo, going through exchange surgery and just continuing on with the Herceptin. I believe the worst is over yet I guess I am just struggling with the fact that even though one big part is over there is still so much more to do and sometimes it feels like life will never be just "normal". I don't have to have rads due to a mastectomy and not sure how I would feel in your situation. Ask questions and read what you can to make a decision you are comfortable living with. Hang in there!!!
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Sanaisa,
My onc told me that if I time the flu shot right, it is beneficial, but if I get it when my WBC are too low, it would be just like getting a placebo because my immune system would not be active enough to form antibodies to protect me. I guess that means it would be best to get it right before the next chemo session??? I worry about both flu strains because I have school-age kids who are always bringing germs home. Once they get something, it's next to impossible for someone else in the household to stay well!
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Sanisa, those articles seem irresponsible and inaccurate to me, especially the second one which appears to discourage mammograms. There is quite a bit going on to try to understand who needs treatment and who doesn't. We know that small HER2+ cancers that aren't treated with chemo recur quite often from the MD Anderson retrospective study. The tumors were node negative and less than 1 cm but had 15% distant recurrence which means mets.
For HER2- tumors that are hormone positive, they have the OncoType test to try to determine which are aggressive enough to need chemo.
As far as flu vaccine, my onc and many others do say to get it during chemo. One should get it at a time in the cycle when your white cells are higher so that there is the best chance of developing immunity. You may not have quite as high a chance of developing immunity but it won't do any harm and it might stimulate enough immunity. I don't understand why they would say that the chemo kills the vaccine. The injection already is dead cells and chemo works against rapidly multiplying cells so it shouldn't do anything to the vaccine.
During chemo, there were times when I got an itchy red rash on the backs of my fingers and knuckles. I used hydrocortisone cream on it to calm it down. I had a bit of neuopathy which was tingling and numbness in my finger tips but I don't think there was a relationship between the two.
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Thanks everyone, I will be getting my flu shot next week, and my kids will too. I did a little more reading about it and I know I need it. They would have given it to me in the onc's office last time I was there, but the doctor hadnt put the order in the computer, so the nurses had to find him for approval , but by then it was too late. he was in a meeting, and I had already been there for so many hours I just wanted to get home. So I will go to my regular doctors office to get it. I found out yesterday that my 12 yr old nephew has swine flu!! He doesnt live near us. I hope the rest of his family doesnt get it too.
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Good morning ladies. Yes, itchy hands and feet along with intense heartburn is part of chemo. Hang in there, there is light at the end of the tunnel.
Lisa
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Yes heartburn was a big problem for me. I took Pecid prescription strength which is double what is over the counter and I also took Protonics and the Protonics works best. I have a sensitive stomach anyway but the TC was hard on it and the Herceptin not so much. I did get an after taste with Herceptin but nothing like the TC. I never got the itching but then I take antihistamins every night because of the other problems I have. The onc wanted to give me my flu shot during my chemo but since I wanted hubby to get his too we just went to my PC and got them. I also got a pneumonia shot at the end of my chemo which I am really glad I did but I got a real red arm but that was not too bad now that I look back on it. Hubby didn't get one since he was having heart surgery. I wish he would get one soon because it should help with the swine flu. It is only good for a viral pneumonia not bacterial. My grandson has something but not sure what but the doc gave him Tamaflu and they really think it is H1N1. He was around us the day he was getting sick so we shall see. In fact he used my computer and then I used it later. I have been really good about washing my hands with soap since I work with the public and cleaning the area of my window but if a person does not work and they go to the grocery store they can be exposed to it. I would say if you doc approves to get it a person should get the reg. flu shot and hope it does keep you from getting it. Even if a healthy person gets the flu shot they can still get the flu it just may not be as bad as it would have. We have a lot of swine flu here in Oklahoma right now and it looks like the vaccine will not be available for a while. We have to go to the Health Dept to get it when it does come here. I am not sure I want to wait outside in the wind and weather to get it.Plus who knows who is already sick in there.
I got 18 Herceptin tx. He wanted to go over the start day by one so I said why not but you know it was like 3 tx in one at the last. I did not want to but when I thought about it I said what difference does it make. Just get it done. I have to keep the port anyway. I go Wed. to get it flushed and to get a blood test but I am feeling okay so I am thinking it should be okay. I have thought that before and my HG was low. Anyway we will see.
I had a nuecular heart scan at the hospital not a MUGA. I am not sure the difference but my cardio did some other tests and one was echo. they were slightly different and I asked why and they told me it was the machines were read different. Okay why? anyway mine were just a little lower from before I started to after I started and they were in the acceptable range. If you have questions I would just ask what was the difference and if I needed a different kind. I had to remind my onc after chemo I had not had another one and he acted like he was stunned. Anyway I got that one and because my blood counts was making my heart act up I had to go to the cardio and they did a lot of other tests. then I got a bad chest pain a month later and had to go to the emergency and they did more so I was covered I guess. It is crazy how your heart can act up to low red blood counts. I know I ask the onc more questions than he wants to answer. I have more now that I am finished and feel better.
It seems like it will never end even after chemo with rad and all but it does and you will feel better with time. Just hang in there. I hate even going for port flushes and blood tests now.
Carolyn
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Well, I went in for my Herceptin treatment today and I am bummed now because my oncologist had to leave the practice because of personal reasons...I really liked him a lot too and have been with him now for 10 months. I will have to start all over now with a different oncologist.
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CCbaby, I am sorry you have to change onc. I hope you get a good one. My surgeon moved but hopefully I will not need him again. I guess if I do have to go through this again there are others just as good. At least you have the hard chemo over with. My onc had knee replacement while I was doing chemo and he had prostrate cancer a while back when a friend was going to him so I suspect he will not practice much longer.
Carolyn
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I am going in today for my final herceptin. I am so glad to have all of this behind me. A great big thanks to all the people on this thread!!! You guys have really helped!
Lisa
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